Crazy Pregnant Lymie{My Illness Blog}

Lyme is Never Ending...

2012-01-26T10:44:00.000-06:00

I am so sick of Lyme disease. I hate how it messes up people's lives and I just hate the whole darn thing. We are now on the path to seeing if our 6 year old daughter, Madison, has lyme disease. For the past several months she has been complaining of body aches, stomach pains, had unexplained fevers, and she seems to have these behavior outbursts that are a lot like those of lyme rage. She is on the autism spectrum but as most lymies know lyme can cause behaviors that mimic autism so she may not really have autism.

We have taken her to the pediatrician several times but they said it is either anxiety or she is making it up. We know she isn't making it up because you can see the pain in her eyes and no child can fake that pain.

It is possible I gave it to her in utero or it is possible she got bit by a tick when we went to Arkansas in 2008 which is where I got re bit. She did have some sort of bug attached to her while there and we got it off but nothing never seemed to come of it.

We have put in a call to my lyme doc to see if he will see her but I am not sure he will since he typically doesn't see kids. If he wont see her then we will ask if he can recommend anyone we can take her too. We really don't want to go down this road with her and we are praying that it isn't lyme disease but based on my history we think we need to get it checked out.

My heart will break if she does have it. Please pray for my little Princess!

16 Weeks

2012-01-20T02:10:00.000-06:00

Today I am 16 weeks pregnant! So far pregnancy wise I am doing ok but Lyme is getting to me. I have zero energy, lots of headaches, and lots of lyme pain. My girls are very excited about the baby and their favorite pastime these days is giving the baby kisses! The baby is going to have lots of fun with their kisses when he or she comes!

LLMD Appt.

2012-01-19T00:19:00.000-06:00

Sorry it has taken me forever to get the update about my lyme doc appt. I haven't been feeling well at all and have had no energy, I barely open my laptop these days.

My appt. was back in December and my husband, our two youngest daughters, and I drove to Louisiana to see my doc. I have to say we left the appointment very disappointed. First of all the doc didn't ask me about any of my symptoms or do a physical exam like he typically does. Then he only put me on one antibiotic even though everything we have read said I should be on two for a better chance to protect the baby. There was one drug that my OB said he would be comfortable with me taking and it is actually just as good as getting IV treatment however my OB refused to prescribe it. Basically we drove 5 plus hours to be given a prescription for amoxycilian(I cant remember how to spell this) and after about 10 minutes of seeing the doc we were done. He didn't even do his normal blood draw.

We left disappointed because we drove out of state to see him and he spent all of 10 minutes with us if that. Everything he did could have been done over the phone and it took awhile to get this appointment so we couldn't understand.

After doing more research and talking with other women who have dealt with lyme pregnancies my hubby decided to call my lyme doc and basically demand adding another antibiotic or we would be finding another doc. Thankfully he agreed as long as we got my OB's approval of doing both antibiotics. We are still disappointed in how the appt. went especially since my lyme doc doesn't want to see me again until after I give birth, which is this summer.

We have debated about finding a new lyme doctor and if we have to we will but the state we live in it is hard to find one and most of the llmd's we can get to don't take insurance but my current one does. We just don't know how we can afford to see one who doesn't accept our insurance. Of course if it comes down to my health declining we will do what we have to get the treatment I need.

Stormy Road

2012-01-05T17:06:00.000-06:00

Sorry it has been so long since I updated on how things were going. I do have an update on my lyme doc appointment but I will write that within the next couple of days.

My Christmas and New Years week was not that great at all. I ended up going to the ER on Christmas Eve because I was coughing, short of breath, and having a lot of pain. I was told that I either had bronchitis or pneumonia and more than likely pneumonia. I was asked if I felt comfortable doing an xray but the doc, hubby, and I decided we would prefer not to because of the baby. The doctor felt confident that I had pneumonia so he prescribed antibiotics for it. The pneumonia was not his biggest concern however. My heart rate at resting was 140 when I was admitted to the ER. He felt that maybe I was dehydrated so he gave me two bags of IV fluids to see if my heart rate would go down but it didn't. There was nothing more he could do and he told me to follow up with my docs because my fast heart rate was a big concern.

My heart rate continues to be always over 100 while resting. We brought it up with my OB but he didn't seem too concerned. Hubby and I are somewhat concerned because my heart constantly feels like it is jumping out of my chest. We did bring it up to my lyme doc and he put me on Magnesium to see if that will help it. If that doesn't help then I will make an appointment to see a cardiologist.

I ended up back at the doctor because I was have excruciating pain in my side and back. It turns out that I had damaged my chest wall from all of the coughing from the pneumonia. So I am a vicodin and if it doesn't go away in a couple of days then I have to go back to the doctor for more tests.

So this is how I spent my holidays. I hope you all had a better Christmas and New Year's. I will post about my lyme appointment in the next few days, sadly it didn't go so well.

Baby Update

2011-12-27T14:12:00.001-06:00

Today I had a sonogram to check on the baby! Everything looked good and the baby is actually measuring a few days ahead. Usually our babies measure really small! It was good to see the baby! Now we are headed to Louisiana to see my Lyme doc tomorrow.

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My God Is Good

2011-12-18T23:03:00.001-06:00

Today I had an acceptance and it probably was an acceptance I should have had over three years ago when I got sick.

I accept this path God has/had planned for me. God makes no mistakes and there is a reason that I'm on the journey of illness and pain. My job as a child of God is "Love the Lord God with all my heart, mind, and strength"(Luke 10:27). I'm supposed to trust in him and to honor and glorify him even when I'm so sick I can't get out of bed.

To be honest in the past of three years I haven't always glorified God the way I should have. My God is big and has a plan for me and though I may not understand why I'm on this path right now I know God knows and I trust in him.

I will still be in pain and have bad days. I'm sure I will still complain but in the end I thank God for each and everyday and vow to do my best to honor him each and everyday!

Even in the hard times My God is good!

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Howdy

2011-12-13T10:34:00.001-06:00

Yesterday I went to the OB and got to hear the baby's heartbeat and that was amazing!!! I go back in two weeks for an ultrasound and can't wait to see my munchkin!

So I'm getting daily headaches and they are annoying the crap out of me now because Vicodin doesn't always help them anymore. Hubby and I decided to go see a neurologist to hopefully get to some relief. I'm nervous about seeing a neurologist because I haven't had good experiences with them in the past.

I have two symptoms that started appearing this past week and they are getting worse each day. They are air hunger and hip pain on my right side. I look forward to my LLMD appt and for relief! I'm back to using my walker and that sucks :-(

So thats where I am this week. I hope you all are doing ok

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Small Update

2011-12-05T11:02:00.001-06:00

So we have found a LLMD that is somewhat in our area and we have been trying to get an appt with him. We have called three days now an have gotten transferred to their answering service. We have left a message with the lady there and she says she makes sure they know we've been trying to get a hold of them. She says this is unusual but it's frustrating. Hopefully we can get an appt soon.

For the past two weeks I've been dealing with a non stop headache and it's quite annoying. I see my OB Friday and hopefully he can help. I've also had a number of instances where my heart seems to feel like its jumping out of my chest. Hopefully my OB or the LLMD can help.

I'm currently just over 9 weeks pregnant and doing ok I suppose. I still have no energy and am dealing with insomnia. Hopefully this too can be helped by my OB.

So I guess that is all that is going on right now. I hope you all are doing ok.

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Letter About Lyme

2011-11-30T18:23:00.000-06:00

The following letter was written by a father whose daughter suffered from Lyme. I have seen this many times on other blogs but thought it would be good to share.

“Dear Family of a Lyme Disease patient,
I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease.
I am one of you.
For more than 6 years my daughter has suffered through this ugly, dark disease.
She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).
She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20′s, one of the most productive and exciting time of her life.
We have taken her to every known medical specialist in southern California as well as three different General Practioners.
She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).
For the first 4 years of her struggle, I was not a good parent, even though I thought I was.
My daughter didn’t have any outward sign of her illness. She looked “normal”. After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back “normal”.
I was, and sill am, one of the world’s biggest cynics and skeptics (I’m originally from Missouri – so “Show-Me”).
Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.
You can’t possibly be this ill and not have something tangible to show for your symptoms.
You’re either just faking it or your lazy or it’s psychosomatic or your trying avoid the real world.
Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us.
That’s the way I approached her illness. It’s time you took control of your illness and will yourself well.
I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease.
My daughter and I have both suffered because of my ignorance (I’m not saying all of you are ignorant, I’m saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.
Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc., etc., etc.
If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more “traditional” illness, like Lupus or Multiple Sclerosis or Cancer.
I’ve done all the study, I’ve been with my daughter at all of the appointments, I’ve watched the misery she’s been through.
Hey they just can’t help the way this disease treats them. It’s not their fault.
We as family members need to be there to support them. They don’t need our pity. They don’t need our skepticism. They don’t need our criticism.
They need our understanding.
If you as family members will take the time to study this disease, you’ll see that it is real. The little buggers who have invaided their bodies are real and they are making our loved ones sick.
Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the internet as well as new books being published everyday on this disease.
We can’t possibly understand the way they feel, not unless we have the same bacteria in our bodies.
My daughter has a long way to go before she’s back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there.
She certainly doesn’t need someone who claims to love her causing her any more pain than she has already.
Families. from one who has been in your shoes, please let them know you love them.
Let them know you’re there to help them.
Let them know that there’s no way you can possibly understand their pain, but that you wil try to understand their illness.
I think one of the most important things I’ve come to learn is that my daughter’s disease may be God’s way to teach me a lesson.
I’m not saying God gave my daughter Lyme Disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.
I wish you all good health and I hope that none of you will ever have to experience what our Lyme Disease loved ones are experiencing.
Sincerely,
LymeDad”

Argh

2011-11-28T23:15:00.000-06:00

I am so frustrated right now. Today I was supposed to go see my LLMD to get back on antibiotics to help treat me and protect the baby but due to cramping and being really ill I was unable to travel 5 hours to see my LLMD. It is just so darn frustrating to me. There is someone in my area I can see but I have heard many horrible things about them and I just don't know what to do. I am so tired of this disease and wish it wasn't a fight to get treated.

Lyme Pregnancy

2011-11-21T01:39:00.001-06:00

I am incredibly blessed that we are fortunate enough to have another baby on the way and I look forward to having him or her. While I'm blessed I totally don't recommend being pregnant while still dealing with Lyme.

For me I have found that pregnancy and Lyme combined make it so I have no energy and I'm in constant pain. Due to chronic pain from Lyme I've been on pain killers and ibuprofen but can no longer take any of those. Sadly Tylenol does nothing for me. My back feels like my spine is crushing and it sucks.

Also, my legs are constantly tingly, crampy, and moving non stop. Right now there is nothing I can take for this bit hopefully when I go to my LLMD next week I will get some relief.

I've heard for some Lyme patients pregnancy eases their Lyme symptoms but so far I'm not that lucky. I don't mean to complain so much but it is hard when you are in so much pain. I'm sure some people think I brought this on myself by getting pregnant but this wasn't planned. We were on birth control and had decided to not have another child until I was Lyme free if at all.

Please don't get me wrong I'm blessed and am thankful for this baby and believe that everything I'm going through is worth it. I can't wait to meet this blessing!

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First OB Appt.

2011-11-17T19:16:00.000-06:00

Last week I had my first OB appointment and surprisingly it went well. My OB was completely ok with my lyme diagnosis and even knew that long term antibiotics were needed. He gave me a list of antibiotics that are safe for me and the baby and I will take that to my LLMD when I go on the 28th.

I got to have a sonogram and everything looked good. The baby's heart rate was a little low at 97 but they aren't concerned. At the time of the appointment I was 5 weeks and 5 days along and tomorrow I will turn 7 weeks. It sounds like we will be doing several ultrasounds to check on the baby throughout the pregnancy. I go back to the OB on December 7th.

So far this pregnancy has been rough. I have been sick a lot and have zero energy. I have a feeling this will be a long 9 months but in the end it will be worth it.

My little bean at 5 weeks 5 days! My uterus is in the shape of a pac man and the baby is the eye, lol :-)

A Lyme Curveball

2011-10-30T03:32:00.000-05:00

This past Friday hubby and I got some unexpected news...

We are pregnant with our FIFTH and FINAL child! I have to be honest and say my first reaction to this news wasn't the best. In fact I yelled out loud "Oh Shit" but now that it has had time to sink in I am excited and happy! I believe God does everything for a reason and I am just going to trust in him during this pregnancy. I am scared of passing the lyme to the baby and my illness getting worse but I am trying to focus on just trusting in God and that we will make it through this!

The girls are very excited and can't wait to find out if we are having a boy or a girl! They really want a boy but after 4 girls I am not sure it is in our cards, I guess we shall see! We think I am due sometime in early July but aren't very positive, it might be earlier than that! Tomorrow we will be call the OB and my lyme doctor! So now a new journey begins! Wish us luck!

Lyme Go Away

2011-09-26T03:59:00.001-05:00

So my Lyme is still being a pest and I hate it. I'm scared to get back on antibiotics because they make me sick and I can't really afford to be sick right now. Hubby has a wonderful opportunity at work but he has to work from the office and not home. He deserves this but with me being sick it is already hard and if I start antibiotics then it would really be hard. We can't afford to put our youngest in daycare or preschool at this time so our options are limited. I'm just tired of dealing with this disease. I'm afraid that one day my hubby may resent me for messing up his life like I have :-(

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I hate Lyme Disease

2011-07-25T03:14:00.000-05:00

So lyme disease is still giving me issues. My weakness in my legs is coming back as is the tingly and numbing sensation. This has me down and I don't think I am ready to go through this all again. We haven't even recovered from my illness before. I am so thankful that hubbies work is understanding and allow him to work at home but I know this isn't easy on hubby. I know he is close to reaching his limits and I don't blame him. He isn't the one supposed to be tending to the house, taking care of the kids during the day, and working a full time job. I feel like I am being robbed and it's not fair. I'm afraid people are going to think I am weak and that I am going to lose the friends I have left. I already lost so many the first go round. I just don't understand why lyme disease does this and why more doctors wont see what it does to your life.

We are leaving in a few short hours to go to Florida to visit hubbies mom, I have been looking forward to this trip all summer long as I love being at her house. We are driving and I have no idea how I am going to handle the 18 hour drive. I know it will be worth it because we will get a change of environment, the girls will get to do fun things, and we will have help from mom. I just hate that I may not being in the best of health while there. On Friday we are hoping to go to Walt Disney World for a day. I guess my non wheelchair or cane trip will no longer be happening if I am even well enough to go. I think that day would be good for hubby and I. We could use a day together and doing something fun. I am just tired of lyme running my life and ruining it.

Relapse

2011-07-20T12:04:00.000-05:00

I have reason to believe I am having a relapse. This is not news I wanted and I don't want to go through all of this again especially because I didn't get completely away from it. Also, it doesn't help that I don't have as much support as I did before. This kills me and I think hurts me more than the lyme symptoms. I sometimes feel that maybe it would be better if I just wasn't even around. I do not want to be on the lyme roller coaster. I want to live a normal life and do normal mommy things. I am tired of missing out on things and not living the fullest life possible.

There is already a strain on my hubby and I due to me being ill. I can understand, I mean after 3 years of having a sick wife a man can only take so much. I have just recently gotten friendships back to a place they were before lyme and I am afraid of losing those. I am not ready to be lonely.

Thanks to my lyme and it causing issues with hubby's work we may have to cancel a trip to Florida that we were supposed to take next week. This sucks on so many levels. I am tired of disappointing others but it's beyond my control, I can't just make myself not sick.

Like I've always said LYME SUCKS

A Tad Concerned

2011-05-04T00:51:00.003-05:00

A few months ago my LLMD had said I was in remission of my co infections and my symptoms showed that. Well, for the past few weeks I have been have bad night sweats. I am not sure if it is lyme, a co infection, or if I am getting them for some other reason. So fellow lymies, I ask you this what do you think?

A Lyme Update

2011-05-02T23:50:00.002-05:00

Wow, it has been awhile since I updated this blog. Honestly I have been feeling better and I have tried to not even think about Lyme disease. Sadly if you have Lyme disease then you know it isn't something you can just forget. Like I said I am doing better, I am even actively running and even ran my first half marathon this past Sunday. I still have bad days and times where I suffer from pain but I am getting my life back and it feels good. I am not taking it for granted because I know that at any moment Lyme can come back and bite me in the butt all over again. Things around the house have changed too. My husband no longer works from home and all of our kids are in school of some sort but I get one of the bus and try to pick the others up from school as much as I can. It is nice after 3 years of being bedridden to being able to have a somewhat normal life even if it isn't totally back to normal. Sadly more and more people I know are getting the lyme diagnosis or I am meeting someone who has it. I pray for all of those out there suffering and I pray that we can all get the care we deserve. May is Lyme disease awareness month and I hope to get together to help spread awareness. I hope all my fellow lymies are doing ok. I think about you all and pray for you.

I did it, I ran a half marathon. Screw you Lyme disease :-)

Life on Flagyl

2011-03-02T23:25:00.002-06:00

I have a love/hate relationship with flagyl. I hate it because for the three days a week I am on it I herx big time and it hurts. I am not even on a full dose yet, I believe I am on 1/2 a dose. I love flagyl because I know it will fight the lyme. This disease is so crazy, I mean you get worse before you get better? That's just plain wrong to me. The other 4 days of the week I am becoming more and more active. I try to run on the days I am not on flagy, I love running. I have my next 5k at the end of this month! My real issues on those 4 days is that I still have sleep issues, while their better they still aren't great. Anyways, I end up not sleeping a lot at night and then crashing during the day.

I hate this disease. I hate this disease because someone I know was diagnosed with lyme yesterday. She is only 16 and such a sweet girl. My kids love her and she is amazing with the girls. She started to get sick in December I believe so hopefully since she got a diagnoses somewhat early(I hate saying that because it really doesn't feel early). It just breaks my heart she has to go through this. I think what gets me is I know how it feels, I know what she is going through and I know what the pain feels like. This isn't something that a 16 year old, or anyone for that matter, a person should not have to deal with. I would appreciate your prayers for this amazing girl and her wonderful and supportive family. May God heal her

Edited to add: Wow when I said I was on half dose of flagyl I was a tad wrong. I'm on 1/2 a dose of 1 of 3 pills I will take a day. Wow if I m this bad at 1/2 a dose of only 1 pill a day I'm scare to move up

Brief Update

2011-02-23T01:14:00.000-06:00

Hello all my fellow lyme friends. It has been awhile since I have blogged on here but things have been going better than any other time in the past two years. So now that we got the co infections taken care of for the moment we are hitting Lyme and can I just say we are hitting lyme hard. I started flagyl and it kicks my butt. I initially tried it last week at 1/2 a dose and the next day I literally felt like I was dying. I was in so much pain I pretty much cried the entire time until my hubby got home. So after that dose we waited on taking it again. I took my next dose this past Sunday and instead of 1/2 of a dose we did 1/4. This has worked out much better, now don't get me wrong I am still hurtng but I am not scared I am dying like I was last week. We are pulsing this medicine so I do 3 days on it and then 4 days off. Next week when it is time to be on it we will go up to 1/2 if possible.

I am embracing each day I have that I am feeling good or at least ok because I know that at any moment the co infections can come spiriling back and lyme could get worse. I know a lot of my lyme friends are going through a rough time these days. I am thinking of you and praying for you. I wish we didn't all have to go through this. Please take care all

Awesome News!

2011-01-24T10:35:00.001-06:00

I just finished up with my Lyme appt and it went awesome! I'm in remission for fibromyalgia and only have a few symptoms left of babesia and bartonella!

The list in the picture used to be all circled but now only 4 symptoms of babesia and bartonella are circled. Now we are focusing on the Lyme part but things are going great!! Oh my doc was impressed with my 5k!

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5k

2011-01-23T22:07:00.001-06:00

A year after being diagnosed with Lyme disease I completed my first 5k race! It took me 44 minutes to do it but it felt so good. It was like I was saying screw you Lyme! As I write this we are driving to Louisiana for my Lyme appt. In the morning. I will update after!

This is me right after finishing

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Running Towards Disney

2011-01-21T11:15:00.001-06:00

I have recently started running and working out. My goal is to participate in the 2012 Walt Disney World Marathon or the Princess Marathon. I have started a new blog to journal my ups and downs of my training. I am only a week into this journey and know I have a long way to go. I would love for you to follow my journey and I would love encouragement and motivation because I know this is going to be hard but I think it is one way to get my life back from Lyme disease. Please visit my blog Running Towards Disney and follow my journey!

Much love to all!

Lyme Thoughts

2010-12-15T05:58:00.002-06:00

Back

2010-12-12T23:03:00.000-06:00

Hello all, I am back.

My new doctor in Louisiana is working out really well! We notice that the medicine has made some progress but it is slow going. I still spend a lot of time in bed and in pain but I am starting to learn to manage a tad bit better. My hair had grown back some and sadly tonight a huge patch fell out so I am now bald again. It is annoying especially because we are leaving for Walt Disney World this Friday and I really would have liked to not worry with a wig or hat. I am anxious about or trip because I have no idea how I am going to do it. I will have a scooter while there so hopefully I will get to spend a good amount of time with everyone in the park. I guess what happens, happens and it will all be ok. Well, I guess that is all for my update right now. I hope you all are doing well! Take care my fellow lymies

11/5/10 Update

2010-11-05T01:52:00.002-05:00

Feeling Like Crud-New Video

2010-11-01T02:48:00.000-05:00

Here is a new video I made. WARNING...this is not a rah rah happy video and it is not meant to be a poor me video. This video is simply a true video I took during a herx and horrible headache, which I am still dealing with both as I write this. This video documents what I am feeling at that moment.

Lyme Rant

2010-10-29T01:24:00.001-05:00

Quick Video Update

2010-10-26T02:47:00.000-05:00

Update Video

2010-10-21T03:33:00.000-05:00

What's Been Going On

2010-10-12T18:32:00.000-05:00

Wow, I haven't posted in a bit. I have to say the new treatment that my doctor put me on is awesome. I am getting more energy and able to actually do stuff and be up and active. I can't do the stuff it is a start. Any little step will help lead me to remission. When my doctor said I would shoe improvements when I go back in November I didn't believe him. Boy was I wrong. I know this may not last long because lyme has cycles and it might get me but at least I am doing a little better! I thank God for this doctor and for his healing hands!

God is Good!

2010-09-23T00:31:00.001-05:00

Coming up in January my hubby and I will have been in our house for 8 years. I'm ashamed to say this but we honestly don't know people from our neighborhood. We know our neighbors and that's it.

Yesterday something strange and wonderful happened and I it shows just how God works in our lives. A women came to the door and told my hubby that another lady happened across my blog and read about my illness and all we are going through. This woman happened to know someone with Lyme disease and both of these women from our neighborhood happen to have 4 children like us and are believers.

They want to help out and told hubby they won't take no for an answer! One of the womans kids came with her and brought stuffed animals for each of or girls. How amazing is this? I'm so amazed by God and know it was no accident she came across my blog. I look forward to meeting these women and pray for a future of friendships! What caring and kind women these ladies are!

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Rough Patch

2010-09-16T06:28:00.001-05:00

Ugh, so the past couple weeks have been rough. Insomnia has really been an issue and I hate it. I have had so many painful days and I am spending a lot of time in bed. There have been some scary moments where I was almost taken to the ER but thankfully so far we have been able to manage things. It sucks not having a lyme doctor at the moment. So many things happened these past few weeks where having one would have been extremely helpful. My appoint is in T-11 days I believe, hopefully my brain let me count correct. I am starting to get nervous. For some reason I have an anxiety that this doctor wont like me or wont want to treat me. I have no idea why I am thinking this or letting it get to me but it is.

Things have been rough in regards to hubbies work. He is supposed to be in the office 1 day a week for at least 4 hours. Well, since summer is over all of our childcare help has gone back to school and I haven't been well enough to watch the kids by myself. Today was actually supposed to be a day for him to go into the office but sadly insomnia got to me so he is staying home. Hopefully he will be able to go in tomorrow. I do have to say he has not complained or gotten mad at me and I totally appreciate that. He has been understanding and supportive. It is just frustrating to me that I can't seem to make it work. I am blessed with such a wonderful husband who understands what is going on inside my train wreck of a body.

Oh, I did a guest vlog on a blog called, The World As I See It, I would love for you to go check it out. You can get to it by clicking HERE

I guess that is all I have for today. I hope you have a beautiful and blessed day! Take care my friends.

Local News Coverage On Lyme

2010-09-08T13:53:00.000-05:00

A local news station did a segment on Lyme disease. My old lyme doctor was one of the doctors featured on this segment. Here is the video, sorry for the poor quality.

Oh Sleep, Where Are You?

2010-09-07T04:36:00.000-05:00

Ugh, in the past two weeks I think I have only had 1 night where I actually got some sleep at night. The other nights I have literally been up the entire night and have basically crashed during the day. I hate it because I miss out on things like taking the girls to school or picking them up. They are simple things that I miss but I love those moments with the girls. What stinks is we can't really call the doctor and ask what to do because I currently don't have a lyme doctor. Thankfully on the 27th of this month I will have a doctor, oh how I look forward to that.

Speaking of doctors...If you live in the Dallas/Fort Worth area my former lyme doctor will be interviewed on CBS 11 news at 10pm. I am not sure the details of the interview but I am guessing that it will be about the controversy and how he basically was shut out of practicing. If you are in the viewing area I would appreciate if you watched it and maybe even contacted CBS 11 and let them know you appreciate them talking about lyme!

That is pretty much all that is going on here. I am just trying to get sleep. I hope all of my fellow lymies are doing well! Take care

What Has Been Going On...

2010-08-30T02:43:00.000-05:00

I thought I would do a quick update on how things are going. I am still off of my antibiotics. I am not sure if I will get back on them soon or if I will just wait and see what protocol my new doctor sets up. I go to the new doctor on September 27. Without taking the antibiotics I am able to be a little more active but the downside is I am not getting rid of the lyme. It is just hard being in limbo between doctors and I am afraid something may go wrong and I don't have a doctor to talk to right now so for now no antibiotics.

I have been getting better sleep lately and I have been able to get up inoo the morning and take the girls to school. I went to their dance classes this past Saturday and took my oldest to a birthday party on Saturday evening. I can't handle things for long periods of time. For example after dance, which lasted 2 hours, when we got home I crashed and crashed hard. I napped for several hours and it was such a hard sleep. After napping though I was able to go to the birthday party with my daughter. On Sunday I was able to make it to church but by the time we arrived at church I was started to feel very fatigued and I have to be honest and say I was extremely grumpy. I tried very hard not to show it to anyone else. I know my hubby noticed but he is supposed to notice stuff like that. I was supposed to take two of my daughters to a birthday part not long after church but I ended up still feeling very fatigued, had vertigo, and couldn't feel my legs or feet(they were all tingly and numb). My hubby decided it wasn't a good idea for me to drive there so sadly we had to miss the party. It was hard to miss the party because the little boy is the son of one of my dear friend and I have been around him since the day he was born. Celebrating with them is important to them. This is just another reason I hate lyme disease.

It is nice being able to do things with the girls even if it is for a limited time. They seem to really enjoy it and the hugs and loving they have given me is amazing. One afternoon I was cuddling with my third oldest daughter, Kate, and she told me that she loved me to the moon and back. It was the sweetest thing so now I say it to all of the girls and they all say it back to me. It brings so much joy to my heart. I am a very blessed mommy, I thank God for all of my blessings every day.

Anyways, that is about it for today. Hopefully this post makes some sense. It is almost 3 in the morning so who knows what I am saying! Have a good day everyone and to all my lyme friends I pray that you are having a good day! Stay strong my fellow lymies!

*The picture at the top was captured by hubby while I was having a bad day. Sadly this is where many lyme patients spend their time, bed

Sleep, Update, & Prayers

2010-08-25T07:57:00.000-05:00

So something cool has happened the past two nights(hopefully this wont jinx it). The past two nights I have actually gotten sleep!!! We added unisom to my nightime pills because the pill I was taking for sleep would put me to sleep but it would wear off and I would wake up in the middle of the night around 3 or 4. So we had some unisom in our medicine cabinet so we thought, lets try it. I am so thankful we did because for two nights I actually slept all through the night and got good sleep!

Yesterday I woke up around 6:45 and I felt refreshed and ready for the day. I was able to help get the girls ready for school and put Kaetlyn on the bus and took Emma and Madison to their school. After dropping them off Chris, Alyson and I went to the store and when we came home I cut potatoes and fresh green beans for a beef stew that we were going to make. I know these seem like little things but for me it was huge. I haven't done stuff like this in awhile. My hands did hurt from the cutting(it feels like I have arthritis or something) but I was able to tolerate it! I did end up resting after all of that but all in all I think it was a wonderful day. I am working up to doing more things and I think if I continue to get sleep at night it might really help me.

Today I am hurting a lot in my legs and feet. They are tingly, my muscles are tight and crampy, and I have a burning sensation but since I got some sleep I feel like I am able to handle the pain a little easier. I am in bed resting this morning but I am hoping I will be able to do more this afternoon, like I did yesterday.

Another thing we did is for at least this week I am taking a break from my antibiotics. I have been herxing really bad from them. I know that is a good thing but I have been on antibiotics since January 2010 and I felt like I needed a break. I am not sure if it is a bad thing or not that I am doing this but it is much needed. I will start them back up on Sunday or Monday and see how things go. I really hate not having a doctor I can call or go see right now. I hate being in limbo. I am praying that the new doc I see on September 27 works out and I am able to get some good help.

I would like to ask for prayers for one of my lyme friends. Dawn, is a very sweet and caring woman who is battling lyme but still has faith in the Lord and her and her husband let God lead them and guide them. Tomorrow Dawn will have surgery to put a port in her chest so she can get IV treatment. This is a surgery that is done often and usually pretty easy. The problem is that Dawn has a ton of chemical sensitivities and has allergies to a lot of things. This makes the surgery harder because she can't handle a lot of things that are usually necessary for this surgery, extra precautions are being taken so she doesn't have a negative reaction to this surgery. I feel for Dawn, she is only able to eat like 12 things and she has to rotate what she eats and she even develops
allergies to water. I want this surgery to go well for Dawn and I want her to get treatment that will help get her well so she can get on with her live and be a witness for the Lord. So I ask for you to please pray for my dear lyme friend. Dawn, please know I am praying for you!

Anyways, that is the update for now. Thank you for taking the time to read my book, I mean post ;-)

Friends

2010-08-19T06:15:00.000-05:00

I have said it before and I will say it again, I hate Lyme. I hate what it does to my life and those around me. Lyme has taught me a lot about relationships and the kind of friend I want to be. I may not have always been the best friend to others but now I know were my faults were and I know I want to change.

One thing that really hurts me is some of my friends don't even care that I am ill and my families lives have been turned upside down. I am shocked that I haven't received any acknowledgment that they care about me. I don't want much just a simple email, text, call or whatever just saying how are you or I've been thinking of you, anything that shows they care.

I know that at this moment I may not be the most available friend, heck I'm not the most available wife, mom, or daughter. I cant help it though, this disease has me in prison cell. I don't like it and trust me I would give anything to be more available and see my friends that I miss so much. It isn't my fault that I'm bedridden and seriously ill.

A fellow Lyme friend wrote on her blog about her one year anniversary of being ill. She also mentioned losing friends or having friends that just don't seem to care. She mentioned that if she had cancer more people would understand and her friends would be more supportive. I hate to say it but she is right. People don't understand chronic Lyme and therefore they just assume we are faking. I just wish some of my friends and my lyme friends, friends has more faith in is.

I want to be a better friend. I will have faith in my friends and I will make sure they always know that I care about them and am always there for them. I vow to be a friend that sticks by them and supports them no matter what cones their way. I will love my friends always.

- Posted using BlogPress from my iPhone

Beauty & Lyme

2010-08-15T12:46:00.001-05:00

First I want to say that I know my husband loves me, he tells me everyday. He also tells me how beautiful I am, I know he means it but I don't understand how.

Lyme has done so much to me both physically and mentally. My husband has stayed by my side through my whole sickness. He very rarely shows how stressed he is, he has taken great care of me and our girls!

I just don't understand how he can think I'm beautiful. Lyme has taken my hair. My husband always liked long hair and now I sit here bald. I don't think I am beautiful and don't see how he can think it.

He has also seen me deal with gross things. I have lost mobility and so much more. I hate all I am putting him through. I hate that he has seen me at my worst. I just don't feel beautiful and I don't see how others can think it. Ugh

- Posted using BlogPress from my iPhone

Thoughts

2010-08-09T21:45:00.000-05:00

I wanted to share this on here because I feel that sometimes people don't understand my illness and that I am in pain 24/7. I am basically just going to pour my thoughts out so I am not sure where this is going. Here I go...

I might be smiling on the outside but most of the time it covers my pain. Don't get me wrong the smile is real but that doesn't take away my pain, it is still there even when I wear a smile. I may look good on the outside. I might be wearing make up and am all dressed up but I fight my pain to get dressed up and put on make up. I want to go out and about because I miss everyone but I still hurt and my illness is still there. I want to live a normal life, I don't want to be sick so I often do things even thought my body is telling me not to. I mask the pain and other symptoms a lot because I want to be normal. I want to join in on activities and see family and friends. I don't want to spend my life in a bed, most of the time I am stuck in bed but I have days where I am able to just pretend that my illness is gone. Lyme doesn't go away.

Also, sometimes I have gotten comments on why I sometimes use a wheelchair, cane, walker, and then other times I'm able to just walk on my own. Sadly lyme disease isn't predictable. One day I may be able to walk on my own for the entire day or for even days but then the next I might not be able to walk at all and need to be in a wheelchair. When I wake up in the morning I always wonder what my mobility situation is going to be.

I guess my whole point is that my Lyme disease never goes away. It is always there and I am honestly in pain all the time. When you have a chronic illness sometimes you have to learn how to cover things up in order to feel somewhat normal. I just don't want you to think that I no longer need prayers or that things are no longer hard for my family. I wish Lyme went away and I wish things would go back to being easy, I just don't know when or if things will ever be normal again.

Day 214

2010-08-01T23:43:00.000-05:00

Here is a video update... Sorry it is hard to hear me, had technical difficulties

Another Doctor Update

2010-07-29T09:07:00.000-05:00

So all day yesterday I still had a lot of anxiety, well I don't know if that is the right word. I was feeling extremely uneasy about how things turned out at the doctor appointment. I just wasn't feeling right and I felt that God was telling me that this doctor was wrong for me. So finally late last night after Chris finished playing Starcraft 2 I asked if we could talk. I voiced my concerns and he had some concerns also. So we have a new game plan. We are going to look into other doctors. We do know of one in Louisiana and we are going to try to get an appt within the next month and we are also going to see if we can find another doctor that will take our insurance somewhere else. I know of a few people who see doctors in California and they accept insurance so we will see what we can find out. If we are unable to get an appt. within the next month with a new doctor then we will go back to see the doctor in Lubbock just because we don't believe I should go a month without being seen and I will need refills on all of my meds.

So if you are a fellow lyme patient and your doctor takes insurance then please let me know. Everyone else, if you could just pray that the right doctor will be found we would appreciate it.

New Doctor Update

2010-07-27T15:12:00.000-05:00

This morning Kaetlyn and I had our doctor appointment with my new Lyme doc. All in all it went well. I like the personality of my last doctor better and we aren't sure of he listened to us as much as we expected.

Here is my update:
He is taking me off of alot of the meds I was on and has put me on new antibiotics.I am no longer going to be getting bicillin shots but I will get penicillin pills. He wants me to get all my root canals removed because they can release toxins than cause more harm to my body due to the Lyme. I am also being put on some new supplements. He doesn't seem to treat as aggressively as we would like but we feel we can give it a month or two shot and that God will lead is in the direction we need to go in. I go back in one month.

Here is Kaetlyn's update:
Nothing much really happened he Had blood drawn for a test called spiro test, which tests for Lyme and several other tick borne illnesses. I must say when she got her blood work done she did an amazing job no crying at all but instead was watching the blood go from her to the tube and asking questions. He has recommended that we no longer vaccinate any of our kids. We have a lot of research and praying to do in regards to this. Kaetlyn was also put on suppliments for the time being. We will known more I'm regards to her next month.

As of right now that is all I can remember, I will have chris read this and let me know what I left out and at some point I will add my new antibiotics on here.

All in all I didn't leave his office with as much hope as I did with my last llmd. I will see how I feel next time and go from there. Thank you for all the prayers and thoughts

Big Day Coming

2010-07-25T21:53:00.000-05:00

Tuesday is a big day. My husband, our youngest, and our 3 year old Kaetlyn will be driving to Lubbock, Texas for my first appointment with my new lyme doc. It is a 5 1/2 hour drive so we will be leaving tomorrow afternoon since my appt it first thing in the morning. We will be getting Kaetlyn tested because she shows some of the behavior symptoms. I am nervous, scared, and have no idea what to expect. I have no idea how he will treat me or if we will stay with him but I have faith in God and know that he will take care of me and Kaetlyn on Tuesday and in the long wrong he will lead me in the direction and show me the answer to my health. I am putting all my faith in God and I can't tell you how much relief I feel and how content I am. My God is good!

"Faith is being sure of what we hope for and certain of what we do not see" Hebrews 11:1

Day 202: A Letter

2010-07-20T07:51:00.001-05:00

I didn't write the following, I got it off a friends facebook status and she didn't write it either. The author is unknown. I wanted to share it though because I think it gives good insight to people who don't understand what it is like to live with chronic pain. So please take a few moments and read this. Thank you.

Having chronic pain means many changes and a lot of them are invisible. Unlike having
cancer or being hurt in an accident, most people do not understand even a little about

chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand ...

... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesnt mean Im not still a human being. I have to

spend most of my day in considerable pain and exhaustion, and if you visit, sometimes

I probably dont seem like much fun to be with, but Im still me stuck inside this body.

I still worry about school, my family, my friends, and most of the time - Id still like

to hear you talk about yours, too.

Please understand the difference between happy and healthy. When youve got the flu, you

probably feel miserable with it, but Ive been sick for years. I cant be miserable all the

time. In fact, I work hard at not being miserable. So, if youre talking to me and I sound

happy, it means Im happy. Thats all. It doesnt mean that Im not in a lot of pain,

or extremely tired, or that Im getting better, or any of those things. Please dont say,

oh, youre sounding better! Or "But you look so healthy! ¨ I am merely coping. I am sounding

happy and trying to look normal. If you want to comment on that, youre welcome.

Please understand that being able to stand up for ten minutes doesnt necessarily mean that

I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty

minutes yesterday doesnt mean that I can do the same today. With a lot of diseases youre

either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be

like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most

cases, I never know from minute to minute. That is one of the hardest and most frustrating

components of chronic pain.

(Please repeat the above paragraph substituting, sitting, walking, thinking, concentrating,

being sociable and so on ... it applies to everything. Thats what chronic pain does to you.)

Please understand that chronic pain is variable. Its quite possible (for many, its common)

that one day I am able to walk to the park and back, while the next day Ill have trouble

getting to the next room. Please dont attack me when Im ill by saying, but you did it before!

Or Oh, come on, I know you can do this! ¨ if you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this

happens, please do not take it personally. If you are able, please try to always remember

how very lucky you are to be physically able to do all of the things that you can do.

Please understand that getting out and doing things does not make me feel better, and

can often make me seriously worse.

You dont know what I go through or how I suffer in my own private time.

Telling me that I need to exercise, or do some things to get my mind off of it¨ may

frustrate me to tears, and is not correct if I was capable of doing some things any or

all of the time, dont you know that I would?

I am working with my doctor and I am doing what I am supposed to do. Another statement

that hurts is, You just need to push yourself more, try harder... Obviously, chronic pain

can deal with the whole body, or be localized to specific areas. Sometimes participating

in a single activity for a short or a long period of time can cause more damage and physical

pain than you could ever imagine. Not to mention the recovery time, which can be intense. You

cant always read it on my face or in my body language. Also, chronic pain may cause

secondary depression (wouldnt you get depressed and down if you were hurting constantly

for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these

pills now, that probably means that I do have to do it right now - it cant be put off

or forgotten just because Im somewhere, or am right in the middle of doing something.

Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please dont. Its not because I dont appreciate

the thought, and its not because I dont want to get well. Lord knows that isnt true.

In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been

made sicker, not better. This can involve side effects or allergic reactions. It also

includes failure, which in and of itself can make me feel even lower. If there were something

that cured, or even helped people with my form of chronic pain, then wed know about it.

There is worldwide networking (both on and off the Internet) between people with chronic

pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after

reading this, you still feel the need to suggest a cure, then so be it. I may take what you

said and discuss it with my doctor.

If I seem touchy, it is probably because I am. Its not how I try to be. As a matter

of fact, I try very hard to be normal. I hope you will try to understand. I have been,

and am still, going through a lot. Chronic pain is hard for you to understand unless you

have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all the time, I know that I am doing my best to cope with this, and live my life to

the best of my ability. I ask you to bear with me, and accept me as I am. I know that you

cannot literally understand my situation unless you have been in my shoes, but as much as

is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I

am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning.

I may need you to take me to the doctor, or to the store. You are my link to the normalcy

of life. You can help me to keep in touch with the parts of life that I miss and fully

intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does

mean a lot.

AUTHOR UNKNOWN

Day 200: Update

2010-07-18T21:44:00.003-05:00

Last week I said goodbye to my old lyme doctor. It was a hard thing to do and I cried when we said our goodbyes! I go to see my new doc in a week and I am extremely nervous. We found out that he doesn't treat via IV which is what my old doc would have done next. IV is the best way to get to the lyme that is in the brain. So we will see what he has to offer and if we aren't satisfied then will we be on the hunt for a new lyme doc. We will be taking one of our daughters with us to get her tested as she shows some signs of the disease, I am praying that she doesn't have it.

My old doc did start me on some new oral antibiotics last week and I am slowly starting to feel the effects of them, my symptoms are getting worse which is normal when starting a new type of treatment because the lyme spirochetes try to throw all of these toxins at you and your body goes out of wack.

One thing that has gotten to me lately is the fact that everyone tells me that I am looking so healthy. It is a great compliment but sadly it isn't true. I do get up and fix my hair and put make up on but that doesn't mean I am healthy, it just means I am overcoming my pain for that moment to try and lead a normal life. By me looking healthy people assume that I am healed and nothing else is wrong but that isn't true but oh how I wish it was. People don't understand how one week I will be walking on my own looking great but the next look like crap and be in a wheelchair. I just hate that this disease is so unpredictable and so many people don't fully understand it.

I did get to work in the nursery at church yesterday and it was sooo much fun! We only had two little precious babies in there but they had the best personalities! I serve once a month and am looking forward to my next Sunday in there! I wish I could go back to teaching the first graders like I was but they are too hard for me control being ill and it is 3 Sundays in a row of teaching and I can't always do that! At least I am serving in a small way!

I'm Sad

2010-07-11T00:28:00.000-05:00

Yesterday I read an article that was extremely sad. It was about a couple whose bodies had been found in a town not far from where we are currently on vacation, like 30 minutes away. It seems that they died from an apparent murder-suicide. The sad thing is the reason for this murder-suicide.

Sadly, both the husband and wife were suffering from late stage lyme disease and haven't been able to get help. They had left Texas and were in Florida trying to find treatment options. It is just so sad that they had to suffer and were unable to get help. There is help out there but it is hard to find and is extremely expensive. Not everyone is able to get the treatment that they need for lyme disease.

Suicide is a common thought in patients with lyme disease. Not only are you suffering from the disease you have to deal with trouble getting diagnosed, being told you are crazy, getting treated, and a ton of other stuff. It puts you through the ringer and sometimes people feel like there is no other way. I have been fortunate and have never had these horrible thoughts. I have my trust in God and the 4 beautiful little girls to keep me going. I just wish all lyme patients had things to keep them going and not focus on the negative thoughts, I can easily see how hard a person can get there.

My thoughts and prayers go out there to all of the people out there suffering from this horrible disease called Lyme. We need to continue to spread awareness so people no longer have to die from this awful disease.

You can read the news story HERE

Before and After...

2010-07-01T02:25:00.000-05:00

Before lyme disease I kept a clean house, actually I was really anal about a clean house. I would clean the house each and everyday and that included mopping and vacuuming. I would have dinner on the table near the time my hubby got home from work and I was able to just get a lot done.

After lyme disease, well I feel like things are falling apart. Not only is my health falling apart but so are the affairs of my house. The house isn't cleaned as often as it should be and things are just falling apart. Since I became ill my hubby has had no time to work on the things that fall apart on the house because he is basically doing everything. He is not just handling what he is supposed to do in life but he is doing my part as well. Now, I am overwhelmed at how much of our house needs work and either due to time, money, or both it can't get done. Here is a list, I am sure there are more things that I forgot about.

*half done paint job in our living room
*a toilet overflowed and now the flooring in the bathroom is cracked behind the toilet
*due to above overflow, carpet near the bathroom is currently being held down by packing tape because we had to pull it up to pick up water and dry it.
*the builders put the wrong type of wood on the garage frame and around the windows so now they are chipping and rotting.
*the outside of our house needs to be painted
*the bottom edging of the door to our backyard has come off and now when it rains water comes in, not to mention slugs.
*our kitchen sink had a leak and now the cabinet under the sink is all moldy(since mold is not a good thing for the kids to be around we are going to see about having this one fixed with hubbies bonus money he gets from a project that just wrapped up)
*the girls rooms are just a disaster

I am sure I missed things. I just hate that because of me things are so neglected and money is so tight. It doesn't seem fair to hubby or the kids, they deserve to live a life so much better than this. What have I done to them?

I am just really overwhelmed and feel a little lost. I do know God is on my side and I have faith in him. He will get us through this, I just wish I knew how. I know he sees and knows what is going on and we just need to trust in him but I can honestly say it is hard sometimes.

Day 167

2010-06-25T02:11:00.000-05:00

Day 159

2010-06-17T01:28:00.000-05:00

Today is day 159 of treatment and I wish I had more to say or more progress has been made. I know i just need to be patient and I am working on that. Last night I had a wonderful night. A dear friend of my held a premier jewelry show for me and the proceeds go to me for my treatment and I also got $227 in free jewelry! I am so excited and I can't tell you how much fun it was to have time with friends. I thank each and everyone of the ladies who came to support me!

In regards to my lyme things are pretty much the same. My brain issues seem to be getting worse. I am having trouble remember what certain things are and I can't finish sentences. Yesterday I didn't know what a review mirror was called. My legs have been pretty bad yesterday and so far today. They are very tingly, numb, and painful. Hopefully they will ease up soon. We have to pick up some prescriptions today and one of them should help with the pain.

Yesterday we picked up a sheet from my physical therapist on exercises that I can do in bed or when I am feeling well enough to move around more. They gave detailed descriptions and pictures so hopefully I wont fall behind.

Well, I guess that is all I have to say for now. I hope all my fellow lymies are feeling ok. I am praying for each and everyone of you and your families! Take care all!

Day 157 Update

2010-06-15T19:50:00.000-05:00

Today I had an appointment with my current LLMD(lyme literate medical doctor). It was a good check up he said he saw some things improving. He can tell just by looking at my throat I am still dealing with Lyme in a major way though. My babesia symptoms are doing extremely well but my bartonella symptoms are getting worse. He added a new prescription called rifampin for the bartonella. Hopefully, this will help to ease the bartonella and I can make some more progress.

Since my appointment was so early in the day and the kids are out of school we had to take 3 out of the 4 with us(or oldest was at Vacation Bible School). I am glad we took them because one, my doc is amazing with kids and second we talked about the possibility of them having lyme. He asked about behavior and if any of the kids showed signs of autism, adhd, etc... and when I mentioned that Kate and Madison had been diagnosed with sensory processing disorder and Kate in particular seemed to have the greatest behavior issues he said we need to get them tested.(lyme can show appear differently in kids). So this now changes our plan for which new LLMD I will be going to see.

There is a younger doctor in Lubbock, Texas who is ILADS trained and deals with children and adults with lyme disease. We have no idea if he is good or not but our doc recommended that we at least try him out since he is in state and takes insurance since we need to get some of the kids tested. So on July 27th, Kaetlyn and I will be going to see this new LLMD, they only schedule two patients at once. If we don't like him or he wont treat the way I need to be treated then we will continue with our plan of me going to the doctor in California and we may just have to find a way to take the kids, if indeed any of them have lyme disease, as well. At one point this doctor was also being investigated by the medical boards but it seems as for now he is safe, but that can change at any time.

So it was a whirlwind of an appointment but very worth it. After the appointment I had my monthly blood drawn. She got into a vein and kept trying to push the needle in but it resisted, can we say ouch, she finally realized that because I have to get my blood drawn so much that the vein has developed scar tissue. So she tried a vein in my other arm and got it but then blew it. So now I have two painful huge bruises on my arms, she even commented on how she was having a bad day with blood draws, yikes. I do get to have one more appointment with my current LLMD, it is on July 15th. At that point I will get my records and any refills I need and say goodbye to the man who gave me hope of health again. I sure will miss him but I am trying not to think about that right now.

Day 151

2010-06-09T14:43:00.001-05:00

WOW Day 150!!!

2010-06-08T02:54:00.000-05:00

Wow, I can't believe I have been on the lyme journey for 150 days! 151 days ago I was given the diagnosis of Lyme disease. I was scared, nervous, but I knew this was the right diagnosis. 150 days ago I took my first antibiotic and a butt load of other medications and I started my Lyme treatment. It has been a long road and I still have a long road ahead of me. I am still scared and nervous about the road ahead of me but I know any pain I go through it worth because in the long run I will get better. Anyways, here is a video update of things.

Day 147

2010-06-05T18:53:00.000-05:00

Today is day 147 in my lyme treatment, I can't believe long it has been. Here is my current protocol

Prescritptions

*zofran 8mg three times a day
*welchol 625 mg 6 pills a day

*sulfameth 800 mg twice a day (currently stopped taking to see if it was the cause of my flare up)

*nystatin 4 pills a day

*trazadone 50mg once per day

*prometrium 100 mg 1 a day

*Cymbalta once a day
*Malarone 350mg four times a day

*b-12 shots daily

*bicillin 1.2 m.u. injection twice a week

Supplements-

*probiotics 20 billion organisms per day

*Xygomen Green Tea 600

*Juice plus

*Alpha Lipoic Acid

*Magnesium

*Omega 3

*Acetyl-L-carnitine

Physical Therapy
*3 times a week

I haven't done physical therapy in a week or two because I have been too weak to get there. If i am unable to go this upcoming week I am going to have Chris call and get a list of stuff I can do in bed. I hope this doesn't push me back too much because I was making good progress in therapy.

Today is day two of cutting out sulfameth from my daily regimen. We called my LLMD on Thursday and he suggested laying off of it for a few days to see if it was the cause of my flare up. So far I haven't noticed a change and am still feeling pretty yucky. For the first time in my life I am taking a pain medication on a regular time schedule. I am taking Tramadol every 6 hours, it takes some of the edge off but I still have pain. My LLMD may decided to up the dose or give me something else when we call on Monday since it isn't doing much. I am a little uncomfortable taking a pain pill so often but I need it and that scares me. I am interested in what we do if it isn't the sulfameth causing me to be so weak and in so much pain.

So far we have raised about $95. We are so thankful for all of those who generously donated money, we can't thank you enough. We are also very appreciative of those who have prayed for us because we know we need God now more than ever and we truly believe he will answer all of our prayers! Also, thank you for those we have asked to put my button on their blogs, thank you for helping spread the word! The love and support we have received is amazing, you all are wonderful! Thank you for everything!

Argh to Pain

2010-06-04T00:53:00.000-05:00

So I am sure many of you are aware that the past few days have been just plain awful for me. I am in a ton of pain, the worst pain I have ever been in. My muscles all feel like they are having charlie horses, my joints feel like they are being torn apart, my head is constantly hurting, my head feels disconnected, things turn to black anytime I am standing, I have spasms all over my body, my arms and legs are painfully tingly and numb. I am extremely weak and have a hard time walking, I can't even cut my own food at this moment. It is just awful.

Yesterday we called my lyme doctor(he can help me until the end of July) and he prescribed me more pain relievers as I only had two left and he also took me off the newest antibiotic(Bactrim) that he added at my last appointment. By taking me off of it he is going to see if I was herxing from it or having a reaction to it. If I improve then we will add it back because it means it is killing off my bartonella but if I continue to decline or be where I am at now then we will figure out something new. I am supposed to tough it out the next few days and call him on Monday. As I said early he did give me a pain reliever to take and he wants to me to take it regularly for the next couple of days. So I am praying that things turn around, this set back has been very discouraging because I thought things were getting so much better before this happened.

I am sorry if I have complained a lot lately, I am just in so much pain that it is all that is on my mind. I hope you can understand and can forgive me. As always I appreciate your prayers, thoughts, and kindness! You all ROCK!

Pain

2010-06-02T00:55:00.000-05:00

I am so tired of pain. For the past several days I have been in soooo much pain and it has been so bad that I have cried a lot. My joints are killing me, I feel like my muscles are tight and cramped and I feel like someone is trying to squish my head. I have blacked out several times the past couple of days and have just felt like crap. Yesterday was hubbies and my anniversary and sadly I spent it in bed very ill. This disease really annoys me, I just hate it. I am trying really hard to be positive and not worry about things but it is difficult. The pressure of trying to get enough money has caused me great anxiety and I have had panic attacks. Ugh, I don't get how a tick can cause so much pain and damage. That tick took away so much from me. Well, there is my rant for the day. By the way Lyme disease SUCKS big time.

Need Help and Need it Fast

2010-06-01T08:35:00.000-05:00

I got an appointment with Dr. J in DC, it is June 14th. He is one of the best LLMDs around and we believe that with him I will be able to go into remission at some point. We need help though. This is expensive and we don't have the money needed. The first visit to see this doc is $550 and for visits after it does go down a little. If I get put on IV treatment then I will have to see him every 3 to 4 weeks. We need to purchase airline tickets and book a hotel for our first visit but we need help financing this. This is very overwhelming and is stressing us out a bit. We know we need to go forward with this but have no idea where the money will come from. If you able to donate even $1 we would soo appreciate it. I hate doing this and asking for help but we really need it.

If you are able to donate anything please click the button below and know that we are eternally grateful and can't thank you enough.

YIKES...My Lyme Fund

2010-05-31T01:02:00.001-05:00

Last night hubby and I had to sit down and research estimates on what it will cost for my new doctor and treatment. For me to even have a first visit with the new LLMD(lyme literate doctor) I need to raise $1000. This would cover an airplane ticket for me and my husband, we believe it is important for him to be there for the first visit and then the rest I would go by myself. It would also cover the doctors appointment fee, food, and lodging. Now in order to get me there to see the doc every other month(at least for the first part of treatment), appt fees, food, lodging, travel, and treatment fees(will most likely have to get a PICC line) we need to raise $4000 every 3 months. YIKES! One of my dear friends from church has offered to do a jewelery show and donate the profits and our church might be able to help out some, but we still have a lot to raise. If you have any idea on ways to raise money I would truly like some advice. We have set up a donation site through paypal. Please please let us know if you have any ideas or tips, we would really appreciate it. I really want to fight this disease so I can go back to being a mommy to my girls and not just the mom always in bed.

Blech

2010-05-29T04:29:00.000-05:00

I am currently experimenting with a new look for this blog. I want something that will catch people's eye because I am hoping to start a fundraising thing in order to help pay for my travel, doctor, and treatment expenses.

Yesterday was a very blah day for me. I just didn't feel like myself and I was very achy. I am sure a lot of it had to do with the fact that I got my period(I know too much info). I only mention it because lyme disease makes your period a living hell. Not only do you have to deal with your normal lyme issues you also add on the lovely issues you get with a period. Trust me it is no fun and my symptoms always get worse. I always find that I am super emotional during this time. The smallest things will make me want to cry and I will get agitated very easily. I am really not a fun person to be around this time of the month, so you may want to stay back!

Right now I am trying to deal with numbness, tingly, and burning in my arms and legs. It is so uncomfortable and trying to sleep is nearly impossible. I can't seem to find a position that is comfortable for me. Another thing I am having issues with lately is bad neck pain. I can't remember if it is my babesia or bartonella that causes the neck pain issue but I am being treated for both and it still really hurts. At times it comes to a point where I can't move my head. I guess I will bring that up at my last appointment with my amazing doctor.

I am still extremely sad that my doctor wont be able to treat me anymore but the anxiety I have from that is getting a tad bit better. I have decided on the doctor I really want to go see! He is one of the best and he is located in D.C. We still have to figure out travel expenses, how often I would have to travel there, and what not. Hopefully we can get it all worked out and call and get an appointment because it will probably take a few months for me to get in. The money thing is hard to figure out but we are hoping to do different fund raising things to get the money to cover everything. I know in my heart that if I am able to get to this doctor in D.C that I will be able to get well. So many of his patients have benefited from his care. I guess we shall see where God leads us!

I guess that is it for now! Thank you for all the support and kindness. If you leave me a comment and don't get a response please forgive me. Sometimes my brain fog makes me forget to do things and I will want to come back to respond and then I forget. I hope you all have a wonderful weekend!

Update

2010-05-28T00:51:00.000-05:00

So I found out some more information about my doc. He will be closing his office in 2 months and I am lucky enough to have at least one more appointment with him before he closes! I go back on June 15th. I am still clueless on what we are going to do. Hubby and I need to sit down and discuss things but due to craziness at his work we haven't had a chance. He has a project wrapping up so we should be able to do it soon.

The beginning of the week I was feeling somewhat good in regards to my lyme but now that isn't the case. My numbness and tingly are back with a vengeance. I also have a headache that wont go away and my head just feels off. I go from being hot to cold and I am waking up drenched with night sweats. I hate that. I have no energy and just feel drained but these are the complaints of every lymie.

We are a little worried that my bicillin shots aren't working as they once did. I am not having herx reactions like I did before. I have talked to various lymies who said that it means it is time to up the does, add something else, or move onto a new type of treatment. I guess I will discuss it at my appointment on the 15th.

I guess that is all for now! I hope all my fellow lymies are doing well! Take care

Scared

2010-05-25T00:53:00.000-05:00

I am scared. I know I am not the first, nor will I be the last, lyme patient to go through losing their doctor due to the medical boards. As I sit here writing this post it is 12:44 AM and I have been crying for at least the last 30 minutes and at various other times throughout yesterday. It is hitting me harder right now because I am beginning to realize just what it means that I am losing my doc. In order to get a good lyme literate doc who is trained in a proper way, I have to travel to see him or her. I have no idea how we are going to be able to afford that. We can barely afford what we are doing now and that is with the help from my parents and my in laws. I can't risk losing our house or something like that because we have 4 innocent daughters who need a home and a somewhat normal life. I mean seriously they have already had to deal with a mommy being bedridden for almost 2 years they don't deserve to leave the only place they have ever called a home. I can't hurt my girls, I just can't cause them anymore pain.

After being sick for 2 years and being told by several doctors that I was just making it all up and crazy, when I got diagnosed with lyme disease this past January and started see my lyme doc I finally started building hope back up. I realized that I could once again have a life and not miss out on my kids lives. I am scared of losing that. I am scared I wont be able to get treated and I will get worse. I really hate to admit this but at this given moment I am having trouble trusting God. I can't tell you how much it hurts me to admit that and say that but as of this moment that is the truth. I just don't understand all of this and it all totally sucks. I am scared, really scared. I don't know what to do and I am at a lost.

Upset

2010-05-24T20:32:00.000-05:00

I am going to try my hardest to contain my anger in this post but I am very upset. I found out today that my lyme doctor has 2 months to close his practice. He had a hearing with the Texas Medical Board on Friday and sadly today this is the news I got. I guess in reality it wasn't unexpected but it hurt to hear it and I cried when I found out. This doctor is the first doctor that I have been to that has ever had compassion and honestly seemed to care for his patient. I do get to have one more appointment with him, I go on June 15th. Hopefully at that appointment we will make sure I have enough meds to cover me until I can get to a new lyme doc.

In regards to finding a new doc I need to go out of state. Most people I have talked to have recommended two doctors. One is on the east coast and is one of the best lyme docs but money wise I don't think we could afford to see him because we would have to travel there frequently. The other doctor is in California and I would only have to go there twice a year. At this given moment I am overwhelmed with the news in order to make the next step but I do know it has to be done asap so I can get an appointment. If you are a fellow Lymie and have a suggestion please email me at cassandra dot kolb at gmail dot com.

My heart is broken and I am extremely sad for this amazing doctor who can no longer help lyme patients. This just seems so unfair and just plain wrong. How could the Texas Medical Board do this? Ok, that is it for now because I am crying again.

Prayers Wanted

2010-05-19T17:31:00.001-05:00

I am in need of some prayers from all of you out there. They aren't just for me but for fellow lyme patients being treated by lyme doctor and for my lyme doctor himself. Tomorrow he has a hearing in regards to how he treats lyme disease. The Texas Medical Board doesn't agree with how he is treating lyme but he gets a change to defend and try to convince them it is helping. More than likely they wont care what he has to say and he will have two options. He can either stop treating lyme patients or he can lose his license. So if he has to choose then he is going to keep his license, which he totally should.

If he has to stop seeing lyme patients then there will no longer be a lyme doctor in Texas. All of his patients will have to go out of state to get treatment. Being treated for lyme disease is expensive and if we have to go out of state the costs go up even more. I am sure there are lyme patients out there where it is impossible for them to go out of state whether is has to do with money or just the physical aspect of traveling. One by one lyme doctors are being attacked by the medical boards and it just isn't right.

It is also a personal issue for my lyme doc in regards to treating lyme disease. He got started treating lyme disease because his wife became ill with it and he saw the controversy and how there needed to be more doctors. He went into treating lyme knowing the risk but wanted to help lyme patients. Not many doctors make a decision like that and actually care about each and everyone of their patients the way he does. He wants to help, he knows what it can do and it hurts him that he may not be able to help lyme patients anymore.

I beg you to pray for him and all of his patients. He doesn't deserve this, he is saving lives and without him some may lose their lives if they can't travel. I can't give you his name but you can pray for Dr. W. God knows the details. If you could also pray on Friday for just a minute I would appreciate it!

Thank you!

The Weekend

2010-05-09T04:30:00.000-05:00

First of all, Happy Mother's Day to all of the mommies out there! I hope each and everyone of you has a special day! So this weekend has both been fun and hard. On Friday I felt awful, the whole week was awful for me. My two oldest had a dress rehearsal and we planned on my husband taking them and I would just continue to rest. Well, as the time got closer to take them and we started getting them ready I felt bad that I wasn't going to be there. This type of stuff are things mommies and daughters do, so I decided I would take them. Thankfully I drove without a problem and my hubby programed the GPS for me. So I made it through dress rehearsal and then we had to stop and get some much needed groceries, only a few things. By the time we were done, I was ready to crash.

My amazing hubby let me sleep most of Saturday and then we all got ready and headed to the girls recital, they both did an amazing job and if you want to see their performances check out my MAIN blog! Since I got to sit the whole show I did really well and it was so fun seeing all the different routines. After the show my parents decided to take us all out for dinner, we had Red Lobster and it was sooo good! The two oldest gals decided they didn't want to come home with us so off to grandma and papa's house they went! Now here is where I make a huge mistake. I told hubby "hey we only have two kids lets go to a store". So we decided to go to Garden Ridge and see what they have for our room makeover! We walked to whole store and came out with a picture for our room that was on clearance, a nifty arm pillow for me to use in bed, the two girls we had wanted some fake flowers so they each got one, we got a 3 person teeter totter, some frames to put pics in for the grandparents and then some coloring books. It was a good trip but it basically killed me.

We got home and after unpacking from everything hubby and I watched a show and then headed to bed. I got off the couch and I was in tremendous pain. My legs were killing me and I couldn't walk. They are all swollen now and the pain is just awful and my tramadol hasn't helped much. It sucks because it is 4 in the morning and I haven't slept. So basically I ruined my own mother's day. I was hoping to make it to church, then lunch with my family to celebrate mothers day but at this point I don't think it will be possible. I am so disappointed and mad at myself. At the time I didn't feel I was over doing it. I really really hate lyme disease. I wish I didn't have to deal with the pain or this awful illness anymore. I have to be honest and say I am frustrated and annoyed. I wish my life was different.

On a good note at dinner my mom mentioned how my Aunt and Uncle want to send us money to help with treatment. Apparently one of my Aunt's friends has been sick with lyme so she knows what it is all about. She also is going to give us a list of specialists that her friend went too, which is perfect because we will probably need some new contacts if my doc can't treat lyme anymore. What was good about this conversation with my mom is I felt like she actually cared that I was sick and was recognizing that this is a real issue and not just something for attention. See, growing up we were never that close due to various things. Whenever I said something was wrong to my parents I was always faking, well now it seems that they are realizing I wasn't and I am not. She showed concern when we told her about my docs investigation and to be honest it felt good. I felt loved and that she cared about me. I have always known she loves me but sometimes I never felt it.

Now my dad, well he doesn't talk about me being sick. He has never asked how I am feeling or what is going on. I know that he loves and cares about me. I know he has a hard time dealing with loved ones being ill but I wish he could just let me feel that he loves and cares for me. Sometimes knowing isn't enough you have to feel it too. I want my daddy to be my knight and instead I feel he is ignoring me. This is probably awful to say but sometimes I feel that the other lymies I have come into contact with or even other general bloggers are more caring and concerned for me than my family and friends. It often feels that certain family members and friends don't care that I am around or sick, they have ignored me since becoming really ill. This disease takes away so much from people and it totally sucks, argh.

I am so very sorry that I wrote such a long post, I wasn't intending to but it all came pouring out. I guess that is why I named all of my blogs Ramblings of. I appreciate all of the support and kindness you have given me. I can't tell you how much it helps me and how much your comments or emails make me feel. Thank yous o much! Take care and I hope you all had a better weekend than me. Once again to all the moms out there, Happy Mother's Day!

ARGHHHHHHHHH

2010-05-06T01:52:00.000-05:00

I am so darn frustrated. I had two really good weeks of feeling well, I was able to get out of bed, take the kids to the park, heck I watched the kids by myself for two days, that was a huge breakthrough. Well, last Saturday my pain and symptoms started getting worse and now it is Wednesday and I am in sooo much pain and it is 1:40 in the morning and I can't sleep. I am numb all over, have tingly sensations all over my body, my head is hurting, and it sucks. I know that lyme has cycles so you will have good weeks and then crash but it still makes me frustrated. I am really frustrated because I started to have hope that I would get to feeling better but now I am once again doubting it. I know it takes time to go into remission from lyme and I have only been in treatment for about 5 months but I have no patience, never have. During those two weeks of feeling well I was able to get some good sleep and I got to spend so much time with my family, now my kids are asking "mommy why are you sick again". Two nights ago my heart broke when my 6 year old asked "why wont you get better mommy" and I told her that I am working on it but it takes time and isn't something mommy can just do. Her response was "but mommy you can make yourself better, you can do everything." It just hurt so much because I know she wants me to not be sick and I feel like I am messing up her life by being sick.

Yesterday I had to get my middle two daughters off the school bus and the driver asked me how I was and said I looked like something was wrong, I didn't look well. Can we say ouch, I appreciate him caring but it still stung. I am scared and nervous because this weekend is a big weekend for us. My two oldest have dance rehearsal on Friday and their recital is on Saturday. I will make it to these no matter what but I know it will be hard and something that I just have to get through. I hope I am able to masquerade my sickness so the girls can see how happy and proud of them I am. Why is this disease so sucky? I just don't get it. I hate this disease and I hate what has happened to my life. I miss my life. Sadly my life now consists of medication, shots, stuck in bed, doctors appointments, and pain. I long for the days of feeling well.

Other Lymie's, how do you keep up your moral and strength? Also, how do you make yourself eat? I have no appetite and am not eating much because I seem to be sick after I eat but I am loosing sooo much weight. I am barely 100 pounds as of right now. Please help. Sorry for my downer of a post but I needed to get my feelings out. I hope all of your other Lymie's are doing well!

Lyme Doc Appt.

2010-05-04T18:02:00.000-05:00

Today I had my monthly lyme doctor appointment. Nothing too exciting went on, things are still hurting but the medicine is still working so we aren't going to change much right now. It does seem that I have fought off most of the babesia symptoms and now more bartonella symptoms are showing so we are adding medicine for those. We discussed my blood pressure being low especially when I stand. I will be going to a cardiologist and another doctor(can't remember what type of doctor) for some testing. My lyme doc thinks that my lyme disease has caused me to have dysautonomia. Not sure what will come of that but one of the docs I will be going to will do more testing and treat that. In regards to my lyme that was really all there was for this appt.

We did talk about my doc being investigated and on May 21 he will have to go down to Austin to fight to keep treating lyme. It looks like he will probably have to stop treating lyme patients in order to keep his license. He said he knew this was always a risk and he wishes it wasn't happening. He said at this point there isn't much we can do but if comes to him not being able to treat lyme patients then we need to write letters to our governor to hopefully try to change things. We will have to get political if we want to see changes because the IDSA is stuck on their clueless decision. My doc did say there is a ILADS trained lyme doc in Lubbock but other than that we will have to go out of state if he can no longer see patients. I haven't heard of this doc in Lubbock so I guess we will need to start doing some research.

Oh and something cool happened while I was waiting to get my labs done at Labcorp. I happened to wear a Lyme awareness shirt today and two women came in and right away knew what it meant. It turns out they are mother and daughter and the daughter has lyme. She used to see my doc but now flies to see one of the leading docs in regards to lyme disease. It was nice to meet another lymie in person. We exchanged emails and I hope to chat with her and maybe meet again one day and start a friendship or something.

I have been feeling really bad the past few days. I have no energy and am in a ton of pain but at least before this I had about 2 weeks of feeling really well. My doc said it is just the cycle of lyme so it is to be expected. I guess that is my update for now.

May Is Lyme Awareness Month

2010-05-02T00:00:00.003-05:00

Yesterday started Lyme awareness month. I am trying my hardest to spread as much awareness as I can. The lovely lady who designed my blog, A Blog To Brag About, gave me a special background color for lyme awarenss. On facebook I have changed my profile pic to a lyme one and I have made a video. I also will be buying green ribbon and putting it on all of our trees and I have two t-shirts for Lyme awareness.

This picture is of a tick and that tiny little thing has changed my life. It has made me unable to walk at times, made me stuck in bed, miss out on life, made me lose my hair, it has totally turn my life into nothing. I hate it and I can't believe something so small can do this. What also irks me is that doctors are at odds with this disease. How can some not believe that chronic lyme disease is real. Seriously thousands upon thousands of people are sick with this and have lost their lives because of this horrible disease. Personally I would not even wish this upon my worst enemy. Awareness needs to be spread and people with Lyme disease need to be heard. We are sick, we are in pain, our lives have come to a stopping point and we need better treatment. We need to be treated without breaking the bank, we need our doctors to continue treating us and not loosing their licenses. How can so many doctors turn their backs on seriously ill patients? What has the world come to? Please I am begging you, learn all you can about lyme disease. Try your best to prevent it and educate others.

Lyme Awareness Video

2010-05-01T02:48:00.002-05:00

Wonderful Day!

2010-04-29T00:00:00.014-05:00

Yesterday went really well! I honestly have no major complaints about anything that happened, well until after hubby got home but you can read that here. I actually took Aly to the park in the morning while all the other kids were at school and then after we picked up Emma from school I took all the kids to the park! We got to feed ducks and fish and have lots of fun playing! It was a really good day and I didn't end up in a lot of pain, I was able to handle it. Around 1 I really needed a nap but was able to work through it and my feet hurt a lot last night but it wasn't bad! I pray that today and tomorrow go as well and that I might get to do this more often and have my life back. Of course I haven't had my bicillin shot this week, I wont get that until Saturday when hubby will be around in case I herx. I owe this day all to God because I know without him I would not have been able to get through it as well as I have! Send good thoughts my way for today and tomorrow please.

DON'T FORGET THAT MAY IS LYME AWARENESS MONTH. PLEASE ASK ME HOW YOU CAN HELP SPREAD LYME AWARENESS!

Long Time No Post

2010-04-28T01:04:00.000-05:00

Sorry, I have been horrible at posting lately. I had some really good days starting last week and lasting until Monday, it was nice because I was able to live a somewhat normal life! Yesterday I took a turn for the worse and it was a hard day. I was tight all over and my joints were killing me, I made it to physical therapy and it was the hardest session ever and I it was only a light session. I am praying that today is a different day and I feel ok. From now until Saturday I am basically going to be the only parent around! My hubby has so big things going on at work today and tomorrow so it will be like old times with him going into the office. On Friday he actually has to fly down to Austin and leaves early in the morning and returns late at night. He also has to work a couple of hours Saturday evening.

I am looking forward to to these next few days because it is what I strive for. I want to be the stay at home mom I once was. I long for those days and now I get to try and be who I once was, I am excited and can't wait for that time with my girls. I am also kind of scared because I don't know how I will do. Sometimes I become so weak and things happen that I can't control however, I do have faith that God will get me through it and I know that I need his help in order to get through the next few days! Please say a prayer for us! I will post how it all goes!

Also, please don't forget that May is Lyme Awareness month, please ask me how you can help spread awareness!

Blast From The Past

2010-04-21T00:05:00.002-05:00

Yesterday was like a blast from the past for me. My hubby had to go into work and we had no one to watch the kids so I did it! I managed not to pass out, get weak, or feel fatigued until after we had picked up hubby from work! It was so nice to be living like old times! Next week I get another go at watching the girls by myself and hopefully it goes well too because I sure do miss taking care of them! I know I am not up to doing it everyday but if we can start with at least one day a week and move up that would be awesome!

Wow, What A Weekend!

2010-04-19T00:16:00.000-05:00

Wow, is all I can say. I just had a whirlwind of a weekend, it was great! On Friday night I headed about an hour away from us to attend my church's Women's retreat! It was sooo amazing and something I really needed. Friday I did great, it was probably the heat massage I got at physical therapy that made me feel good that night. Saturday was a little bit harder than me, I ended up missing one of the sessions the speaker was given but I got a good nap and was then able to attend the rest of the activities and I even got another nap during free time. It was so wonderful being around all my friends and not worrying about my illness. It was brought up a lot but I didn't mind the support, love, and outreach I got were wonderful. I got to spread awareness about what the disease really is. By Sunday I was in extreme pain and missed breakfast and worship and then we headed home. I can't tell you how great it was to be with my friends and to meet new friends. God got me there and I really needed it.

Last night a while after I got home my wonderful husband gave me bicillin shot and that really did me in. I believe I will be out of commission all day long! I do need lots of prayers my way as my husband has to work tomorrow and we have no available childcare so I will have to take care of the kids by myself. I am very nervous.

Physical Therapy & Park Time

2010-04-10T00:00:00.001-05:00

Yesterday I was able to do 30 minutes solid of physical therapy! I added a few new exercises and it went very well. I was a little bit more sore after this appointment but it was worth it. The exercises with the fitness ball are extremely hard. They work so many muscles and require strength that I don't currently have but am building up to.

After my appointment we picked up Emma from school and then headed to two different parks in our neighborhood. The first one we went to was more of a toddler park and was perfect for Kaetlyn and Alyson, all of the girls had a blast though. The second park is a huge playground with swings and is near a pond. The girls loved going by the pond because there were ducks and they got to feed them! Alyson fell in love with the ducks and tried to catch them, they didn't like that very much!

Mommy and 3 of her girls on the teeter totter!

I of course crashed when we got home but I don't regret what we did. It was so worth it and I would do it a million times over. I love being with my family and building wonderful memories with them. I hate that this disease has taken some memories from me and the girls. I am trying my best for it not to take too many, we already have to deal with enough. Yesterday was an extremely good day!

The girls watching the ducks!

The picture of my hubby and I above was taken by our oldest daughter, Emma! You can view more pictures from our playtime HERE

Investigation

2010-04-09T00:00:00.000-05:00

Yesterday I found out that my lyme doctor is being investigated. I have been afraid of this happening and I can't believe it is going on. It scares me because I have no idea what to expect or what will happen. I just hope he is able to continue practicing because I really like him. If he has to stop practicing then I have to find a new doctor and more than likely will have to go out of state to be treated. I would appreciate prayers that nothing really bad comes from this investigation and that he will be ok. He is just trying to make people better and healthy and look what they are doing to him, it makes me soo angry.

Day 91 Welcomes Bicillin

2010-04-08T02:02:00.000-05:00

Actually day 90 welcomes back bicillin to the weekly schedule. Last night I got my first bicillin shot in a week. It hurt sooo bad, even my tricks that I have learned didn't help the pain. It is like the bicillin was mad at me for not having it in a week. I am already herxing from the shot, which I guess is a good thing. I am sore all over and in a lot of pain. I am also having trouble sleeping and have a migraine like no other. Yesterday I also had physical therapy and we added two new exercises and boy were they hard. They both use an exercise ball that goes under my legs near my calves. Doing these new exercises I worked every muscle in my legs, butt, and stomach. All I can say is wow I was sore after. Now I have to buy one of these lovely balls because I have to do all of the exercises I learn at therapy at home. I am also thinking of taking a yoga class. The owner of Chris's company has a yoga studio and she said there are some classes that are restorative classes and once I am doing better I can move up to regular yoga type classes. Hopefully we are able to work out scheduling and stuff, I think these classes could help me. Have any of my readers ever taken a yoga or restorative class before? I am wondering what to expect.

I guess that is all I have for today's update. I imagine I will be sleeping most of the day or just in pain all day. I guess we will see.

Answered Prayers

2010-04-07T20:12:00.000-05:00

We found out today that insurance is covering at least another months worth of bicillin, we received the acceptance letter today and the shots! The letter said they will cover until the end of June but as of right now they only allowed a month's supply so hopefully like last time they will also ok the second month. There was no fight or anything to get insurance to cover it, they just did! I am so happy and it saves us a whole bunch of money! Praise the Lord!!!

There is something new to pray about. I am in physical therapy 3 times a week, well insurance has given us a number to which they will cover and after that we have to pay. Well, lets just say the number is low and I will reach it quickly. We need prayer that they will up the number or that we will have a way to pay for the physical therapy. The place I go for physical therapy is really accommodating and they will charge us what insurance pays but it is still a lot. I know prayer works so if you could please pray we would appreciate it! Thanks!

Day 89 Continued...

2010-04-06T07:54:00.000-05:00

This is probably going to be a poor me post but in all honestly I don't really care right now. I am frustrated, extremely frustrated. Here is why...

*I am frustrated that I didn't sleep at all last night

*I am frustrated that my legs are in so much pain today and that my body wants to react to that pain by my legs constantly jerking. The jerking makes it hurt more.

*I am frustrated that because I can't drive myself I was unable to get my husband a birthday card or the ingredients I needed to make him a birthday cake.

*I am frustrated by this stupid disease, I hate how it has taken over my life. Lyme it is on and I am taking my life back.

*I am frustrated because my arms, hands, legs, and feet are all tingly.

*I am just frustrated

Now that I got that out I can move on and not be frustrated anymore, take that Lyme disease.

Day 89

2010-04-06T01:50:00.001-05:00

Yesterday my husband received a call from the pharmacy that sends me my bicillin shots. They had contacted my lyme doc to get a refill on my shots and the ok to run it through insurance. We could use some prayers that insurance will cover it once again. It will be around $800 or so for a months supply so we could really benefit from insurance covering it.

I do have some news on the front of being off of the bicillin shots. If you don't remember at my last lyme appointment my doc decided to have me go off the shots for a couple of days to see if I get worse or if I get better. If I get better then that means the pain I was feeling was before was good pain because it meant there was lyme dying off. If I got worse then it meant that the shots weren't working and I would have to get a picc line. I am happy to say that I have gotten a little bit better, praise the Lord! I am not feeling the greatest but I was able to get around this past weekend and the pain is more manageable. So it looks like I might be sticking with the bicillin shots. My butt will be sore and I will have months of feeling just awful but at least I don't have to a cath going to my heart at this time! Of course we have to get confirmation from my doc that he is on the same page and agrees that I am doing better off the shots, but since he okay-ed my bicillin refill I don't think it will be a problem. According to the pharmacist my refill is for 3 months of bicillin shots, so I guess after the 3 months I will find out where we go next!

LLMD Appt. Update

2010-04-01T11:39:00.000-05:00

This morning I had my lyme doctor monthly appointment. It went well, not much to really tell. I am to stop my bicillin shots for a week to see if my pain decreases or not. If it decreases then it means the bicillin shots are doing their job and we will just stick with the bicillin shots for awhile instead of doing the PICC line. If the pain stays the same or increases then we will go to a PICC line. So I guess we will see how that turns out, we will call him in one week to discuss what happened off the bicillin. I have to go see two new specialists. I know one is a cardiologist, my lyme doc just wants me to get my the valves around my heart checked out because sometimes lyme can affect them. Sadly I can't remember the what type of specialist the other one is but I do know that I will have to do a tilt table test and some other tests similar to that. Not sure when these appointments will be or when my next lyme appointment will be. He really wants me to see the specialists before I go back so we can have some answers and make a game plan then. So that is what happened at my appointment today nothing too exciting!

Tick In The House

2010-04-01T02:25:00.001-05:00

So Lyme doesn't exist in Texas. Can someone explain this to me then?

Physical Therapy Outcome

2010-03-31T17:51:00.000-05:00

Today was my first official physical therapy appointment and it went really well. I was dreading it and didn't want to go at first but I am so glad I went. My therapist is amazing and so much fun. She knows when I have reached my limit and was just a blast to work with. She also knew a lot about lyme disease. She knew the controversy and knows people who have it. It was nice and refreshing not to have to explain it and to have someone who completely understood the disease! She even told me some other side affects of Lyme that I didn't know about. She seems really well educated and I look forward to seeing her again on Friday. She will be my therapists on Wednesday and Fridays and then on Mondays it will be the therapist that did my evaluation. Today I worked on the stationary bike and then did lots of different stretches. I am to do the stretches once a day and each day if I can add at least one more of how many I do. So it was a good appointment and I am glad that I am doing this! Sadly insurance wont cover much of it they only cover up to $1500 which we will hit in about 3 weeks of appointments and I have to do at least 8 weeks.

I was supposed to have my neurologist appointment this morning but I had a rough night last night. I think I was herxing or something so I ended up not sleeping well and I was in so much pain this morning that I couldn't even get out of bed. We rescheduled so I will update when we go. Tomorrow is my lyme appointment, I will update after!

*Don't I look like a big ole dork in my workout clothes! Please excuse my hair, it is growing back after I lost most of it and I really didn't feel like wearing my wig or hat today.

The Lyme Disease Controversy

2010-03-31T02:27:00.000-05:00

The following videos explain what Lyme disease really is and what the controversy is about. Please watch and help raise awareness, thank you!

Also, please send prayers and good thoughts my way today. I have a neurologist appointment this morning, I have my first real session of physical therapy in the afternoon, and then in the evening I get my bicillin shot. I will try to post an update of how the appointments went later today. Thanks for the support everyone!

Day 81: Physical Therapy

2010-03-29T16:41:00.000-05:00

I had my evaluation today for physical therapy. It was hard and painful but the therapist was really nice and understanding. She didn't make any negative comments in regards to the diagnosis of Lyme. My legs are extremely weak and that is the biggest concern but all areas need work. I could have done actual therapy today but we decided since the evaluation was so hard and painful that we would just wait. For the next 6 to 8 weeks at least I will be going 3 days a week, thankfully the office is really close by! I have to be honest and say I am a little scared, I am not ready for the pain it will cause but I do know it is worth it.

Does anyone have ideas on what I should wear to PT or where I can get cheap workout pants?

50 Posts and 80 Days!

2010-03-28T03:31:00.002-05:00

Wow, so today marks my 50th post on this blog and 80 days of treatment!

Starting tomorrow I will begin physical therapy. I am really not looking forward to this but I understand why I need to do it. I just don't like to be in situations like this. I wont find out how often I have to do it until after my appointment tomorrow. I so don't want to go. Any other Lymie's do physical therapy before?

On Wednesday I get to go see a new neurologist. My lyme doctor wants me to just be checked out by her to make sure nothing else is going on on top of my lyme. She is a lyme friendly doctor and they have worked together before. He just wants to make sure I am getting all of the treatment that I need to be getting. I am also not looking forward to this. I hate having to go through the whole story of my illness and I know she will want to do a whole bunch of tests, yuck.

Then on Thursday I go see my Lyme doctor. I don't mind this appointment so much. I am really comfortable around him and I know he has my best interest at heart. I am hoping that my urine test results are in and we can get an answer on that. We will more than likely be talking about a PICC line because both hubby and I(even though I don't want to) believe we need to go down that road to get the best treatment. I am scared of the PICC line and the herxes that come with it but I know it is worth it.

I guess I will do one big update after my lyme appointment on Thursday unless something comes up. I am hoping to do a Lyme fact and prevention post on this blog and my everyday blog. We will see when I have the energy to get around to it. Since the weather is getting warmer and people will be spending more time outdoors I want them to know the facts and how to prevent it.

I guess that is it for this update. I can't believe it has been 50 posts on this blog and that I have been on treatment for lyme for 80 days. Big numbers people, big numbers!!!

Have a wonderful Sunday!!!

EDITED TO ADD:
When I started writing this post it was 3:30 AM and now when I am back to adding this it is now 7:30 AM. I still have not slept and in all honesty I feel like crap. I got my bicillin shot and it kicked my ass, excuse my language. I imagine the rest of the day is going to be hard but hopefully I will be able to get some sleep and soon.

Day 76 & Some Prayers Are Needed Please

2010-03-24T03:53:00.001-05:00

This past Monday we sent of a urine sample of mine, sorry TMI, to be tested at IGENEX. We have done the blood test through them and the results didn't show enough Lyme so we are trying the urine test in hopes that there will be dead body parts of the spirochetes and that will give me a positive. This is a much better test than the normal test doctors use for testing Lyme disease but it still has its problems. The problem is, that any testing for Lyme is hard. They are just not accurate enough. If you get a positive then great, you defiantly have Lyme disease but if you get a negative you could still have Lyme. The reason the tests are so inaccurate is because the spirochetes have a way of going through muscles, tissues, organs etc.. and hiding. If you have had Lyme for a long time it makes it even harder because they have really burrowed into things. These things go everywhere and can affect every part of you. So mostly Lyme is based on a clinical diagnosis and some on blood/urine tests. My blood tests did come back saying I had co-infections and basically if you have the co-infections you have Lyme.

Anyways, the reason I need this test to come back positive is because if it does then insurance might be willing to pay a part of my PICC line and the medicine I need for it. If it doesn't come back positive then we will have to pay for everything ourselves. To get the PICC line put in it is about $2500 from what we have read and the medicine is about $80 a day and I would need it 4 to 5 days a week. I would then also have all the oral stuff I am on as well, so it adds up really quickly. If you could just send us some prayers we truly would appreciate it!

My next Lyme Literate Doctor appointment is on April 1st.

Birthday Party

2010-03-20T00:56:00.000-05:00

Last night we went to Dave and Busters to celebrate my nephew's 10th birthday, I can't even believe he is already 10. I remember missing a day of school my senior year of high school and waiting at the hospital for him to be born. Anyways, it was a lot of fun. My whole family was there and we got to eat yummy food and play some fun games. After being there awhile I ended up getting very tired and seemed to lose all of my energy. We got to spend a few hours at the party and it was fun but after awhile I just wasn't able to take it anymore. I spent all day before the party resting in bed and I hate that I wasn't able to last the entire party. This disease seems to just take away everything from a person and their family. I can't help but feel guilty for all the things I am missing out on. I just want to be normal and feel healthy again!

Explanation of My Blog Design

2010-03-14T03:36:00.000-05:00

I wanted to take a moment and explain a little bit about why I chose to make the blog layout I did for this site, well at least the one for the moment!! I love rainbows, they are so cheery and just put a smile on my face. When you have lyme you need things like rainbows in your life. Another reason I put rainbows on it is because somewhere over the rainbow I am going to go into remission and feel like my normal self again. I am sure of it, I just know it will happen someday! I may doubt it occasionally but overall I know it will happen!

Now for my post dividers, honestly I am not sure why I picked them. I think it is cute and goes with rainbows so I decided to use it! Then on my sidebars you will see ticks, well obviously I chose those because they are what causes lyme, those tiny bastards(excuse my language I don't usually use language like that). Also, I tried to incorporate green because that is the ribbon color of lyme disease!

So that is why I have the current blog design that I do. Whatcha think?

Paranoid

2010-03-12T04:14:00.000-06:00

Yesterday Chris called me to tell me that he got a call from the friend who was watching 3 of our kids, she told him that our youngest wasn't acting like herself. She was coughing, had a runny nose, and just seemed out of it. As Chris was telling me this I couldn't help but think she has to have lyme. Alyson has had constant cold since the beginning of December and it has been cold here and flu season plus she has 3 sisters who go to school so it makes sense that she keeps catching things. However, in my mind it is hard to not think the worse, that I passed down lyme to her. I am paranoid that whenever she catches something or something seems off with her that is lyme disease.

As I was telling Chris about me being paranoid he admitted to have thoughts similar to mine. A few weeks ago he took our dog to the dog park with the kids and near the dog park is a nature trail that goes into a heavy wooded area and he thought that would be nice to do sometime. Then as soon as that crossed his mine he thought no we can't do that. lyme is in heavy wooded places and our family has already been devastated with lyme. We have seen what I have to go through since I got lyme and in now way do we want our children to have to endure that.

I hate having this disease, I hate what it has done to our family. Anytime I see a commercial for Arkansas or anything that has to do with Arkansas I get an anger inside me, like it is the state of Arkansas at fault for me getting lyme. That is where I just happened to get bit this last time. I honestly don't ever want to go back to that state just because I got lyme there and my friends son got lyme there at the same time. Our church has been going to a family camp there for the past 3 years and we don't want to join in the fun anymore because of what lyme has done to our family.

I just want to know when will I stop thinking everything that happens to my daughter has to be because she has lyme,we are going to get her tested at some point? When will we be able to stop limiting what we do or where we go because we are afraid of the kids getting lyme? When can we stop worrying and just have a normal life? When, when, when?

Is this a normal part of having a disease, or am I just crazy and in the wrong state of mind? Has anyone else ever thought things like this due to a big change in their life? Am I alone?

Help From My fellow Lymies

2010-03-10T19:44:00.000-06:00

To my fellow lymies out there, I need your advice. I have been on the bicillin shots for a few weeks now but I am still having trouble with them. I am still extremely terrified of them and they always hurt so much. How do I get over this? I was for sure that after a couple I would get use to it but I am not. I basically have a small panic attack before each one. What do you do to prepare for these shots?

Day 62

2010-03-10T02:50:00.000-06:00

I mentioned in a previous post that at my last appointment my doctor put my on zofran for my nausea. I was so nauseous that I couldn't eat and therefore couldn't take my pills. Well, the zofran helped and I am now able to take all of my medication. The problem now is I seem to be having more herx reactions. The past few days I have literally had no energy. It hurts to move and I am in constant pain. It is good that I am taking my meds and it is good that I am having these reactions because it means the meds are doing their job but boy does it suck.

60 Days & The Lovely Brain Fog

2010-03-08T03:36:00.001-06:00

Woohoo, day 60 of treatment, should I be cheering for that or not? I guess so since even though I am in more pain it does mean in the long run I will be better.

Today I wanted to talk about my brain fog or just the effect that this horrible disease has had on my brain. Several weeks ago my Aunt and Uncle sent us a wonderful donation to go towards my medical costs and as soon as I got the check I wanted to send an e-mail to say thank you. I put it off right then because I had to take care of something else but knew I needed to come back to it. Well, I would remember that I needed to send it and at times I thought I had sent it but when in all honesty I can't remember if I sent it or not. My memory is shot and I am forgetting things or not remembering them at all it sucks. I did send that e-mail for sure right before writing this post.

Chris and I will have conversations and I wont remember having them, I do things or put things places and don't remember. It is honestly very scary. I just want my old brain back. Sometimes I am unable to complete my sentences because the process just gets messed up and I really feel like I sound dumb compared to what I used to sound like. I get words wrong or say them wrong, my brain is just messed up. Why does this disease have to be so awful? Why can't more doctors acknowledge this disease and test and treat for it sooner? How many people have to lose themselves and then become so ill before they find someone to help them? It just isn't fair and it sucks, majorly.

Edited to add: after writing this post I thought to go look back in my sent e-mail and I did send that thank you e-mail back on Feb 21. Crazy that I completely forgot that I sent it but I am glad I did send it!

AHH, Zofran

2010-03-07T01:01:00.000-06:00

Today is day 59 of treatment!

At my last LLMD appointment I was put on Zofran because I was extremely nauseous and wasn't eating or able to take all of my pills. Well, I have now been on this medicine since Thursday night and it is my new best friend. I never thought my nauseousness would go away. I am still have trouble getting food down but I am able to drink Ensure shakes and take my medicine so we are getting there! Since I have been able to take more of my medicine I am experiencing more herxing but the herxes are as bad as the ones I get with my bicillin shots so for the most part I am handling them ok. I am just excited to see some improvement and can't believe I went so long with out zofran!

Day 56

2010-03-04T11:57:00.000-06:00

On this 56th day of treatment I had my monthly appointment with my Lyme doctor. Overall the appointment went well, I am having a really bad day so he got to see what that was like and in a weird way that was a good thing. I got my igenex results back and on the bands that are important for Lyme disease they showed some antibodies so I have a faint positive, this test is not 100% accurate because it is hard to pick up on the antibodies especially if you have had Lyme for a long time. Since I have the reactions I have to the bicillin shots there is no doubt that I have Lyme. If I didn't have Lyme and was given bicillin shots then I would show no reaction. I am going to continue on the bicillin for at least another month and hopefully we will get a full blown positive with my urine test for Igenex because then we will talk about a PICC line at the next appointment. Chris and I talked a little on the way home and decided that even if we don't get the full blown positive we will still talk about the PICC because that really is the best way to get the meds and treatment for Lyme. My doctor just wants a positive so insurance will cover it, a PICC line and then the meds for it are really expensive, the medicine alone is around $80 a day.

I have lost 4 pounds since my last visit which isn't good. I haven't been eating a lot due to severe nausea I have been having and since I haven't been eating I can't take a lot of my pills. On top of the nausea I have also started to have trouble swallowing so eating and taking pills is extremely hard for me. I now have a prescription for zofran for the nausea and will need to drink and supplement drink, like Ensure, 3 times a day just to make sure I am getting calories in. The problem with me losing the weight is that I don't have much fat and so I am starting to lose muscle instead and that isn't good. I will also have to start seeing a physical therapist. They will come to our house and for the first couple of months it will mostly be stuff that I can do while in bed since I am going to be pretty ill the next couple of months. My doctor said to expect to be stuck in bed and extremely tired in the upcoming months because the bicillin and other meds are killing of the Lyme, babesia, and bartonella and the body reacts by shutting down. I am not looking forward to it but know that there will be a light at the end of the tunnel and it is worth it. He said that after the first couple of months I should be able to have more good days!

As of right now that is all I can remember, I have been having a lot of brain fog today. I go back to see my Lyme doctor on April 1st! I have to say I am truly blessed to have a Lyme doctor so close and he is wonderful. He is funny and I have faith in his work. He got into treating Lyme because his wife ended up getting Lyme and some other of his family has it or is in remission from it as well.

*The above picture is of spirochetes which is what Lyme disease looks like under a microscope. I got the picture from The American Society for Microbiology.

Letter to Those Who Doubt

2010-03-04T05:04:00.004-06:00

This letter has been going around on several different Lyme blogs I read and I wanted to share it here. It is written by a dad who at one point doubted his daughters illness.

Dear Family of a Lyme Disease patient,

I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease.

I am one of you.

For more than 6 years my daughter has suffered through this ugly, dark disease.

She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).

She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20's, one of the most productive and exciting time of her life.

We have taken her to every known medical specialist in southern California as well as three different General Practioners.

She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).

For the first 4 years of her struggle, I was not a good parent, even though I thought I was.

My daughter didn't have any outward sign of her illness. She looked "normal". After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back "normal".

I was, and sill am, one of the world's biggest cynics and skeptics (I'm originally from Missouri - so "Show-Me").

Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.

You can't possibly be this ill and not have something tangible to show for your symptoms.

You're either just faking it or your lazy or it's psychosomatic or your trying avoid the real world.

Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us.

That's the way I approached her illness. It's time you took control of your illness and will yourself well.

I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease.

My daughter and I have both suffered because of my ignorance (I'm not saying all of you are ignorant, I'm saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.

Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc., etc., etc.

If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more "traditional" illness, like Lupus or Multiple Sclerosis or Cancer.

I've done all the study, I've been with my daughter at all of the appointments, I've watched the misery she's been through.

Hey they just can't help the way this disease treats them. It's not their fault.

We as family members need to be there to support them. They don't need our pity. They don't need our skepticism. They don't need our criticism.

They need our understanding.

If you as family members will take the time to study this disease, you'll see that it is real. The little buggers who have invaided their bodies are real and they are making our loved ones sick.

Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the internet as well as new books being published everyday on this disease.

We can't possibly understand the way they feel, not unless we have the same bacteria in our bodies.

My daughter has a long way to go before she's back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there.

She certainly doesn't need someone who claims to love her causing her any more pain than she has already.

Families. from one who has been in your shoes, please let them know you love them.

Let them know you're there to help them.

Let them know that there's no way you can possibly understand their pain, but that you wil try to understand their illness.

I think one of the most important things I've come to learn is that my daughter's disease may be God's way to teach me a lesson.

I'm not saying God gave my daughter Lyme Disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.

I wish you all good health and I hope that none of you will ever have to experience what our Lyme Disease loved ones are experiencing.

Sincerely,

LymeDad

Moving on and Day 55

2010-03-03T00:10:00.001-06:00

Just in case you saw some posts before I deleted them, there was some drama on here but it is inappropriate for this blog and defeats the purpose of this blog. I have removed everything related to the drama and am now moving on. I no longer accept anonymous comments however so to leave a comment you may have to register with google or blogger. OK housekeeping done!

So today marks day 55 of treatment and it has been a very rough week. Sunday I had an extremely scary and down right violent herx. I think I scared Chris because I know I scared myself. I was unable to control movements of my arms or legs and was jerking all over the place. I also lost the ability to talk. It was extremely scary, on Monday I still had a herx but it was mild compared to the one on Sunday. Yesterday was an ok day for me, I ended up not sleeping on Monday night due to the herx I had so I slept most of the day. I finally completed the urine test for the Igenex test and as soon as we get my doctor to sign the form we will mail it off for testing, praying for a positive. If I am feeling well enough tonight Chris and I are hoping to have a date night. For Christmas Chris's boss gave us a gift card to Salt Grass so we are hoping to have a nice dinner together. My mother in law leaves Friday and we will be sad to see her go. She has been a lot of help and a lot of fun, we all love spending time with her. I go back to the Lyme doctor on Thursday and be on the look out for a video featuring Chris. I want to get his views and thoughts on the herx I had the other night and what it is like being a caregiver to a spouse. So I guess that is it! I will at least update after my appointment Thursday! Take care all and thank you for your support and love!

A Psalm for those Hurting, Sick, or Depressed.

2010-03-02T01:26:00.000-06:00

A sweet friend from church, Carissa, has a blog called 365 Psalms, and on that blog she writes, with the help of God :-), a Psalm a day. She recently wrote a Psalm that she had several of people in mind of when she wrote it. She sent the link to me saying she had thought of me and when I read it I cried. It is beautiful and has wonderful words for those who are in pain or are sick to read. I wanted to share it with you and I hope you enjoy it as much as I did. Please check out Carissa's 365 Psalms, she is very talented.

To those who are hurting,
who are sick or depressed,
cling to the Lord your God!
The Lord is ever present;
His promise to be with us stands.
If you cannot feel Him,
then know He is with you
and rest in this knowledge.
The Lord has His arms around you;
He carries you as His own.
The Lord is faithful to His children;
He never abandons them to fate.
Yes, the Lord is carrying you even now;
hold tightly to Him!
He will see you through
for He has a plan for you
and you will fulfill His plan.
Oh may you make the Lord your covering

and shield as He fights for you!

Day 52

2010-02-28T03:31:00.000-06:00

So I was able to figure out what day of treatment I am on and today is day 52. It is hard to believe that it has been that long. It is in the middle of the night as I write this, I am sure that is not at all of a shock to my readers. I am in the process of having a herx reaction and am not doing so well. I made a video earlier this morning talking about the herx but now things are much worse. I am in a lot more pain. I go from being very cold one minute to the next feeling like I am burning up. I am having to force myself to eat so I can take my next dose of medicine and it is extremely hard. Just the thought of food makes me want to throw up so eating is not going so well. I believe this reaction is due to my bicillin shot that I got last night. I was supposed to get it later today but I have a birthday lunch for a friend that I really want to go to tomorrow so we did the shot a day early. So far we have noticed that after my shot and the day after things get pretty rough with me. It is a good thing even though it is hard to go through because it means the bugs are dying.

As I typed the last line I finished my food, I still have the feeling of wanting to throw up but I really need to take my medicine. I have 7 pills that I need to take now, they include antibiotics, vitamins, malarone, and stuff for yeast. This is one of the hardest parts of my day, pill taking. I just have no energy or desire to eat and I always get a nauseous feeling and in order to take the pills I have to eat and of course the pills make me nauseous as well. It is a vicious cycle I tell you.

I managed to get all 7 pills down, don't you love this play by play? Now only 3 more doses left today plus a b-12 shot. Oh man am I really feeling nauseous now, seriously this disease sucks. There honestly needs to be more awareness about Lyme disease because no one should have to go through this crud. It amazes me that if I would have caught that this was Lyme disease when I first became sick I probably only would have needed to do one round of antibiotics and I would have been fine but I didn't and now our lives have been totally changed. It is just shocks me that a tick bite can cause so much harm and to sooo many people. I pray that chronic Lyme will one day be a recognized illness and be covered by insurance. It isn't fair that we have to go through a life changing illness but then to have to worry about finances on top of it is just wrong. Ok off my soap box for now.

This herx sucks and I want nothing more than to just go to sleep but I can't I hurt to much and can't get comfortable. I just hope that I am able to make it to my friends birthday lunch tomorrow! So that is day 52 so far.

Here is the video I made about two hours before I wrote this post.

Over Did It...

2010-02-26T15:37:00.000-06:00

I way over did it yesterday and I am paying for it today. Yesterday my two oldest girls had dentist appointments and I was the only one who could take them so I did. After the appointment I decided to go to a used clothing store that was near the dentist because our oldest is moving into a new size, I got some great deals! After the used clothing store we needed to go to Wal-Mart to get some items and then finally we went home and I rested for almost 2 hours. After my rest I took my oldest to her ballet class and we got home about 7:30 and that was my Thursday. I had a lot of fun spending that time with my two oldest girls and I really enjoyed doing typical mommy things. I think the girls really enjoyed it too. Today though is not a good day. I am in so much pain and have absolutely no energy whatsoever. I was up late last night with a huge headache and very sore muscles. Even though I am in so much pain today I don't think I would have changed a thing yesterday. It was good to just have a day to feel like my old self again. While I was driving to the dentist appointment yesterday I realized just how much I really do miss doing the ordinary mommy type of things. I pray that one day I will be able to make it back to doing this things regularly. I hate how this disease attacks you and just changes everything. I hate that what others can do with no problem takes all my strength and then I pay for doing it with pain. I just don't understand why I have to go through Lyme disease. It really sucks and I hate it. I am not loosing faith as I do know God will get me through it but I don't like it.

Things...

2010-02-24T02:09:00.001-06:00

Hello everyone. I finally got my bicillin shots in. So far I have had two doses and let me tell you they are not fun at all. They hurt soooo much, seriously they hurt more than any of my epidurals did. The injection site stays sore for days and if I accidentally bump against something it hurts badly. I did learn a few tips that helped with the second one. before the shot I sat with a heating pad on my bottom for 10-20 minutes and when it was close to time being up Chris took the shot out of the fridge to warm it up a bit. I was then given the shot very slowly, it took like 10 minutes and during this time I cry, scream, yell, and clinch my teeth. After the shot is given to me I then use the heating pad on the area for another 10-20 minutes and then the area isn't as sore. These shots suck but I can tell after only having two we have noticed a difference. I have had herx reactions with both of them, which is a good thing. The day after getting my second one my mother in law looked at me and said you don't look as pale as you usually do so we attribute that to the shot. These shots hurt really badly but I know they are worth it.

On Monday I went and had my blood drawn for my Igenex test. We are praying that this test comes back as positive because then we may have better luck getting insurance to help with at least some of my picc line. I still have to take a urine form of the Igenex test but there has been some complications with getting the orders and such so at some point I will do that. My next appointment with my LLMD is March 4. I look forward to going and seeing what he has to say and what our next step is in treatment. ***Emma insisted on taking a picture of me before I got my blood drawn, I think she did a good job!***

Having my mother in law here the past week has been wonderful. She is here for another week and a half. She has been taking care of so much and both Chris and I are under a lot less stress than normal. The girls also love having her around so it is fun!

oooh, on Monday after getting my blood drawn for my Igenex test Emma and I went to the store to pick up cupcakes for her to take to school and some other things. I was very proud of myself as it was the first time I went to the store by myself for a long time. After a little bit we had to rest and take a break from shopping but I was able to finish and make it home ok. I have been driving a little and it is ok. I think for the most part we will avoid having me drive just because my brain function isn't as sharp as it used to be. Sadly there are times though where it is unavoidable. I ended up crashing later that night but it was wroth it!

God is still answering our prayers. My aunt and uncle sent us $200 last week and then this past Sunday Chris received an anonymous donation of $200 while he was at Church. Then yesterday one of my best friends mom sent us $100. I cried when I opened it and it meant a lot coming from her. I have known her since I was in 4th grade and she has been like a mom to me. We are just so blessed and it is amazing how our financial needs are being met. God is faithful and God is good!

We do appreciate all of the support, prayers, and well wishes! I can't believe how hard this road is but with the support of our friends and family we are making it through it. We love you all!

Sorry this was a lengthy post but it had been awhile since I posted and I had a lot to say! Once again thank you for the well wishes and prayers, we truly appreciate them!

An Example of a Herx Reaction

2010-02-18T21:45:00.000-06:00

This is just one example of one of my herx reactions. This was a mild one