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I actually forgot that I had written this down!! Oh my goodness...can we say Lyme Brain? It's long so I don't blame you if you don't want to read it all I wrote this in 2008 so there is more to my story...on a good day I'll have to sit down and try to write out the rest.
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One of the hardest things about this disease is the crazy person that I turn into sometimes.
Yesterday morning I woke up with one of those throbbing headaches that nothing helps. You know...the kind where you pop Advil all day long hoping it will take the edge off the pain. I don't tell you that to justify my behavior, simply to explain my state of mind before I tell you about my craziness.
Last night when my 3 cats decided to take their nightly 4 am romp my sleeping body happened to be in their path. I guess to be more exact, I should tell you that I wasn't actually sleeping. You see, Jack (the big black fur-ball) had been yowling at the door for over an hour. He's been an indoor cat for almost three years...I don't understand why all of a sudden last night he decided he wanted to be and outdoor cat again, or why he thought I would let him. Harley (the tabby) had been good, but Polo (the Siamese fur-ball) is still in kitten stage...which of course means that he is the enthusiastic leader of the nightly romp. So of course after the hour of yowling, with my head pounding, and the flying body of my Siamese landing on me for the 4th or 5th time I lost it just a little bit.
I leaped out of the bed brandishing my pillow like an avenging sword and began to chase Super-Kitty around the room, doing my best to whack him with the pillow, screaming "SHUT UP! SHUT UP! SHUT UP!" the whole time. My husband sat up in bed looking at me in groggy shock, I don't know....perhaps in disbelief and incomprehension at my apparent desire to kill my beloved cat. You see, Hubby sleeps like the dead and has no idea that I was slowly tortured to the point of insanity.
Polo dove under the bed and I abruptly realized that Crazy Lady had surfaced.
I crawled back in bed next to the shocked Husband and began to sob and giggle all at the same time. "My head hurts..." is all that I managed to get out. A few minutes later I felt a warm furry body snuggle up behind my knees. Polo had forgiven Crazy Lady. How do they do that? Love us so completely that even when we are utterly unlovable they still love us?
Lyme is basically a disease of inflammation. Chronic Lyme just means that I had it for a very long time before they finally figured out what was wrong with me. My battle with my illness has been going on for a lot of years.
During the summer of 1995 I was 19 years old. I've always been pretty adventurous and that summer my adventure of choice was to work with a traveling Rodeo Camp. Yes, I realize that probably sounds very strange to most of you....but what an adventure! Because we were working a rodeo all of the staff was required to wear jeans and boots, and if we were in the rodeo ring we had to wear long sleeves. Summers in the West can be very hot and this summer was VERY hot! We also worked about a million hours a week. Not only were we up early working with livestock and working the rodeo's but we were also counselors for the campers. If you have ever been a camp counselor you know that this means that not only did we work from sun up to sun down, but we also worked through out the night. Kids who are at camp for a week are convinced that it's a week of freedom and fun, and that if they sleep even a little they will miss out on something.
Summer 1995 was the first time I can really remember getting sick. I'm not talking about the flu or a cold, but really sick. Due to the heat, the lack of sleep, the dirt and horrible living conditions (which I will spare you a description of) by the end of the summer I had lost 20 pounds and was very ill. My parents picked me up somewhere in Wyoming and I can remember my father being appalled at my condition. Since I had been at camp I had no idea that I had lost so much weight or that I was as sick as I was.
After my parents got me home they got me in with a doctor. The general consensus seemed to be that I had a lung infection. I have asthma so it doesn't surprise me that I had an infection. The infection persisted for six or eight weeks and when I started college in the fall I spent the first several weeks going to class and then going back to my dorm room and sleeping.
I slowly got better, and things seemed to be fine. For a few years I battled seemingly unrelated health problems...fatigue, headaches and that sort of thing, but nothing that anyone seemed to think was too serious.
After graduating college in 1998 I accepted a job at a medical clinic in Little Rock. Right before going to Little Rock I was bit by a Brown Recluse spider...the doctor said it was either a brow recluse or a black widow, but he was leaning towards the recluse. They actually told me that I would loose part of my foot...thank goodness I didn't! But I limped for months.
I moved at the end of May and stayed with my cousin and her family for the summer. During that summer my health started to deteriorate again. I began having extreme fatigue and nausea. I was throwing up at least once a day. During this summer the dizziness and headaches started up also. I had just started this new job and didn't want to loose it so I forced myself to go to work every day. One of my most vivid memories is sitting at my desk, taking phone calls to schedule appointments. I remember that between each phone call I would put my head in my hands and just pray for the end of the day to come quickly.
I would come home from work, go straight to my room and sleep or rest until it was time to go to work again the next day. At the end of the summer I got an apartment with a room mate. Melissa was really sweet, but I'm sure she wondered what was wrong with me. During this time I had been going to several different doctors including a family doctor and a rhumetologist, trying to figure out what was going on with me. You see, I knew this wasn't normal. I'm the girl who lifeguarded for 7 years. I swam a mile a day for years. I also mountain biked about 35 miles every other day or so. I grew up riding horses and helping my dad train them. I knew that going from that active to where I was now, not even able to shower or feed myself some days, was NOT normal.
Every doctor I went to told me that there was nothing wrong with me.
Finally I went to a new family practice doctor and asked him to test me for Mono. Because of my extreme exhaustion I was convinced that I had Mono. He asked me about all my symptoms and when I finished telling him everything, he looked at me and said "You don't have Mono. I'm pretty sure that what you have is depression, and I'm going to start you on Prozac."
Anger, hopelessness and disgust welled up in me. I told him that OF COURSE I was depressed...I had been sick for months and no one could tell me what was wrong with me! I also told him that depression wasn't causing me to throw up every day or to have dizziness and headaches all the time. I told him I wanted a Mono test and after we got those results we could talk about the fact that I was depressed. He grudgingly agreed to do the Mono test.
About a week later I got a call from his office telling me that my Mono test came back positive and that I should rest for a few weeks. That was all the advice or help they could give me.
So I took three weeks off of work and then came back part time for about another two weeks. I didn't realize it at the time, but that was probably not enough time to heal. My boss and my work had been very good to me...here I was, three months after taking a new job and they gave me 3 weeks of sick time and paid me! I didn't want to abuse their trust so I got back to work as soon as possible.
When I look back on my journey over the last 8 or 10 years I recognize that the summer of 1998 was when my illness took over.
Over the next year or so my health stayed about the same. I still battled exhaustion, headaches, dizziness and nausea daily...and slowly the pain started to set in. I probably don't talk much about this time in my life unless when someone asks I can sense that the REALLY want to know. I was so sick that it was all I could do to manage to work full time. My only friend was my room mate, because I didn't have enough energy to go to church or to go out and make friends. I read a lot of books, watched a lot of TV and spent a lot of time online. A lot of nights the only reason I ate dinner was because my room mate took pity on me and fed me. On weekends I would frequently not shower and not even leave the apartment...not because I didn't want to, but because I honestly couldn't manage it. When the warmer months came around I spent a lot of my spare time sitting by the pool...the sun and the restfulness of that activity was something I could handle. I knew this wasn't normal for a 22 year old girl fresh out of college.
I know that this time period must have been terrible for my family. My parents live out in Kansas...pretty much in the middle of nowhere. They moved to Kansas when I was in college, so not only was there not job opportunities but I didn't know anyone either. I would call my mom on really bad days, sobbing into the phone and telling her that I wanted to come home. She told me I could come home anytime I wanted, but we both knew that there wasn't anything out there for me. At least in Little Rock I had a job and good health insurance.
By far, one of the worst symptoms that I began to experience is what I will call Brain Fog. It's exactly what it sounds like....thinking through a fog. During these times carrying on a conversation with someone became extremely difficult...anything that took much brain power was very hard for me. When I felt like this I would even avoid driving because I knew my reactions were slow.
That next year I finally found an amazing family practice doctor that diagnosed me with Chronic Fatigue Syndrome and a sleep disorder. He put me on an antidepressant that had the wonderful side effect of regulating my sleep patterns. This was by no means a miracle cure, but now that I was actually sleeping most nights I did feel a bit better...enough to trust that this wonderful physician would do his best to get me well, even if he wasn't really sure what was going on with me.
During this time I also started having minor heart problems. He helped me with that and I also tried a lot of muscle relaxers and pain relievers. Most of them made me feel dopey and sleepy....I hated that since I already was fighting that without the medicines...so I did my best to manage the pain without actual medication.
Eventually over the next year or so my doctor diagnosed me with Fibromyalgia. My symptoms went from just the exhaustion, nausea and headaches (those were the main ones anyway) to pain. I was having muscle pain and joint pain...mostly in my neck and shoulders. He sent me to a physical therapist for awhile, but insurance doesn't pay very well for that and it soon became too expensive. Massage Therapy seemed to really help but again it was expensive enough that I couldn't afford it very often.
About a year or two after I was diagnosed with Fibromyalgia I started going to a church that I really liked, and I even ventured to volunteer to work with the High School youth group. I think I was slowly coming to terms with the fact that I would most likely battle this illness for the rest of my life. I was determined to make the best of it, and I knew that making friends would help with the depression and loneliness.
Shortly after joining the church and volunteering with the youth I was making a lot of friends, but there was one young man that really caught my eye. After spending a few weeks getting to know each other it was clear to both of us that we were meant to be more than friends. I had explained to him all about my illness, half fearful that he wouldn't want to get involved. We talked to each other for hours about everything...and I found out that his mom had had a brain anurism a few years back and he told me about all the ways that had affected him and his family....and how their lives had changed. I saw so much love, compassion and gentleness in him and I saw those same qualities in his father. I knew that if he decided he wanted to, he could handle my illness.
Nine months later, on July 28, 2001 we were married. Despite my illness and everything else that I had been though I had been blessed more than I could ever imagine. Brett loves me unconditionally and has done everything in his power to see me get well.
About six months after we were married we heard about a doctor down in Houston, Texas that had a theory that a lot of people with Fibromyalgia and Chronic Fatigue Syndrome actually had Lyme Disease. We both figured we didn't have anything to loose by going down and seeing this doctor....so in December of 2001 we flew down to Houston.
Our first appointment with Dr. H. was amazing! Not only did he not think I was crazy or tell me that all my symptoms were in my head (like so many other doctors had)...he was listing my symptoms for me before I could even tell him about them! As it turns out, this doctor had gotten sick with Lyme and managed to cure himself! Not only was he a doctor who understood this disease, but he had been in my shoes! I started treatment that month.
I can't tell you what a relief it was to finally know what was wrong with me! I wasn't just a lazy person or crazy like so many people had suggested! Something was really and truly wrong with me and we were on the right road!
posted
Thats some story. I mean that in a good way. I wish you the best in your healing journey. And congratulations on marrying a kind and compassionate man!
Posts: 624 | From Oklahoma | Registered: Jun 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Joyful,
Thanks so much for sharing your story. I liked all the details. It could have been longer - I still could have kept reading
The feeling is indescribable when we find a doctor who believes, understands, and knows how to help us, isn't it!
I looked at your blog too and just wanted to say your pictures are really, really beautiful.
Blessings,
Hens
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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It's truly amazing to see how the Lord has brought you through your trials and used you despite all you have been through.
Keep serving Him.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
I have checked out Daisy's God Thought! Good Stuff I hope you like the pictures...although there are none of me or family because of the whole keeping our identity a secret thing, lol.
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