Lyme - My Medical Misery

It all started in the fall of 2004 when I had what felt like a lump in my throat. It was persistent enough that I went to my doctor. A CT scan came back normal. Months later the lump feeling in my throat persisted so I returned to the doctor. Again, everything tested normal.

In the spring of 2005 I got a promotion at my job and held my first management position. I was 36 years old and finally ready to view my job as a career path. At first I liked the job but it was very demanding, very stressful, and very long hours. Along with the lump in my throat, I started experiencing chest pains as well as pressure in my chest, neck, and throat. I lost fifteen pounds without trying. My heart would pound hard and irregular several times per day. I assumed these symptoms were from the stress of my job. Over time I came to hate my new management position. The stress from my job made me feel like I was drowning and it was not worth my declining health. So I swallowed my pride and stepped back down into sales while I looked for a job that I would actually enjoy. In the meantime, I developed a dry hacky cough that persisted for months. I sometimes felt dizzy. In the fall of 2005 was when the ear infections started. I had them off and on for about a year. Then the facial pain came. My eyes burned, my jaw felt tight, my cheeks hurt, and all around my eyes hurt. I was fatigued.

My dream job was offered to me in the spring of 2006. I would be moving to Hotlanta! I was very excited to move to a new exciting city and work for a top manufacturer in the telecom industry. I left my house that I loved, my neighborhood that I loved, my church that I loved, my friends, and my family. Being that I had been in Raleigh since I was seven and only left for the four years of college, it was a big move. But I was excited about the opportunities that were ahead of me. I was young, single and ready for the big city.

Mom and I made a weekend trip to Atlanta to find an apartment for me. At this point I would wake up feeling fine and started feeling bad in the early afternoon. So we would go looking for apartments early knowing that I would start going downhill in the afternoon. While in Atlanta we wanted to explore a bit and find a fun place for dinner. It didn’t happen. I took some sort of prescription for pain and it knocked me out. Mom let me sleep and when I woke up we just hit a small diner across from the hotel. Definitely not the kind of big city dining experience we wanted.
My dad was driving the UHaul and I was driving my car. We were heading to move me into my new apartment and were in the heart of Atlanta approaching the Grady curve when my heart started pounding hard and I knew I was going to faint. In the several seconds that it lasted I searched for a place to pull over but knew I was not going to make it…that I would faint at the wheel of my car in the busiest part of downtown Atlanta’s traffic. Then it stopped and I didn’t crash. I knew that episode was not a reaction to the excitement I felt about moving to my new city. Filling out the new hire forms for my new job I had the option of a short term disability buy up. I would pay a little extra each paycheck and if I ever had to go on short term disability I would get a higher percentage of my pay. About six years earlier my mom had to go on disability for rheumatoid arthritis and I had all these weird symptoms that I had not figured out yet. I really didn’t think I’d ever need it but I decided to pay the extra money just in case. Good move on my part.

I had seen a couple doctors in Raleigh but when I got to Atlanta I started the real cycle of doctors. In the next two years I would see four medical physicians, a naturopath, two ENTs, an oral surgeon, an ophthalmologist, three massage therapists, an endocrinologist, four chiropractors, two acupuncturists, a rheumatologist, and neurologist, a physical therapist, a fibromyalgia specialist, and a facial pain specialist. And oh yeah, a cognitive behavior therapist to help me "learn how to live with pain". I didn’t go back to the doctor that just prescribed antidepressants…that pissed me off. I actually had two doctors pray for me during my appointment with them. Whatever the means, I didn’t care…medical science or divine intervention…just makes me well. I was fortunate in that not one doctor told me it was just in my head.

I loved my new job. I traveled all over the southeast conducting training on our products and wining and dining my customers. It was one of those jobs that people said "they actually pay you to do this?!" I was making good money doing something I actually enjoyed doing. I loved Atlanta, I loved my job, bought a house I loved, but I was progressively getting more and more sick with no diagnosis. When I traveled for work I found myself looking for the blue H signs that indicate a hospital was nearby. I wanted to be close to one in case I needed to go. Sometimes I felt so bad that I was truly afraid I might die. I had a lot of living left to do…a lot I wanted to experience. And I certainly didn’t want my parents to have to deal with the death of a second child. And I didn’t want my brother to have to deal with the death of another sibling.

My social life slowed to almost non existence in the summer of 2007. I didn’t feel good enough to date anymore. I occasionally went out socially but began to not make plans in advance as I didn’t know how I was going to feel from one minute to the next. I fluctuated between feeling crappy and shitty. On my good days I only feel crappy.

My dad always taught me to save 10% of my income for retirement and I’ve always done that. He also taught me to have enough liquid savings to last several months worth of living expenses. I had not done that until I got my new job in Atlanta. I was finally making enough money to save a considerable amount. I saved $12,000 before I got so sick I had to use my short term disability. When I stopped working, my dad asked me if I needed help financially but I proudly said "No, I’ve got $12,000 in savings…I’ll be fine!" At this point I was at a medical center that I believed could help me. They did more extensive testing than I had ever had. It was expensive though. I was spending about $2,500 per month. That $12,000 lasted about four months. I began to hate it when people told me how great I looked. I had lost 15 pounds and I didn’t look sick or even act sick. I have been told by several doctors that I had a high pain tolerance. And I was good at putting on the happy face. I only wanted to feel as good as I looked.
When I went out on disability two people casually asked me "what do you do all day?" I wanted to respond with "well, I usually sit poolside and eat bon bons while I sip an exotic cocktail". But I felt the need to explain what I really do so that people would believe me that I’m really sick. I told them I went to the medical center and spent about six hours every day doing various therapies. I would get chelation IVs to rid my body of heavy metals, colloidal silver IVs to kill pathogens, ultraviolet B irradiation to kill pathogens, hydrogen peroxide IVs for God knows what, glutathione IVs for detoxing my liver, detox saunas, detox ionic foot baths, detox diet, hyperbaric oxygen chamber…the list goes on.
Most of the forty specialists I ended up seeing thought that my issues had to do with something in their field of expertise. Most of them would assure me I landed in the right place and that they were going to be able to help me. At first I found precious hope in their words of confidence. Eventually though I acquired the attitude of "I’ll believe it when I see it". I usually gave each doctor several visits before giving up and going to the next. I really appreciated the few doctors that actually told me my problem was not something they could help me with…saved me time and money.

Along the way I had decided it would be a good idea after all to get on an antidepressant. The emotional toll of being sick with no answer in sight weighed heavy on me. Lexapro to the rescue! I went from being teary eyed a lot to quite happy. In pain, but happy. After almost two years of being happy in pain I decided to get off Lexapro and feel the real feelings. I thought it would be better for my body and perhaps better for my emotional well being to actually feel unhappy about being sick…that’s natural. I also thought it might help me get the doctor’s attention a bit more. A happy patient that smiles while saying she is in pain is not as effective as the one who cries in misery while explaining her pain. That lasted about two months…I was miserable…back to Lexapro.

I was pretty much convinced I had Lyme disease. Mom had researched the symptoms and I had a lot of them. I joined an on line support group and was even more convinced when I learned that a diagnosis is most often made based on symptoms rather than unreliable tests. My symptoms matched those of Lyme even though I had tested negative. I learned a lot about Lyme on this website and it was devastating. Very often misdiagnosed for years, debilitating, not recognized by the CDC as a chronic condition, and very hard if not impossible to cure. . My white blood cell count was low and the doctor told me my immune system was compromised. He suggested I get tested for HIV. Although with medical advances I think a person with HIV may be better off than a person with Lyme I still hoped I had Lyme rather than HIV because of the social stigma. At this point I just wanted a diagnosis…and something that was curable. My perspective changed. Everything is relative. When I went to the ENT to have my sinus cavity checked for fungus there were brochures in the waiting room about plastic surgery…various techniques for reducing facial wrinkles. It seemed so trivial to me. Can’t people just be glad to be alive and healthy? I was disappointed when the ENT didn’t find any fungus. I just wanted the doctor to find something…anything. When I heard of people wanting to buy extravagant items I thought to myself that they better take that money and put it into savings in case of an emergency…you never know when you or a loved one may get sick. Once when I didn’t respond to a lighthearted story my mom told me, she acknowledged that my life was just very serious right now…she was right. I didn’t have much interest in small talk about trivial things. Sometimes though I like to hear other people talk about their social outings…I lived vicariously through other people’s experiences. I always wish I was closer to my brother Darryl. He seems very hard to have a close relationship with. Sometimes I feel like he doesn’t care a lick about having a relationship with me. He recently sent me a book called The Two Kinds of Decay. It was about a girl and her struggle with an illness. It meant a lot to me because I know it was his way of showing me he cared. I read the book in 24 hours partly because it was a good book and partly because it meant so much to me that my brother sent it to me.

I see a lot of devastation right now. Although I bought my dream house, I could only afford it in an economically depressed neighborhood. I constantly see poor people just trying to get by and young kids becoming victims of their surroundings getting caught up in crime and drugs. I chat with people on line about their illness. At first it was comforting to know that I was not alone in my struggle. But it has become quite depressing because some people are on my same path but without the emotional and financial support I have. They can see hope right in front of them but cannot afford to reach out and grasp it. Then there are the people at the medical center where I get treatment. The one that stands out the most to me is a young boy who is paralyzed and in a wheel chair. He told me he was shot in the back of the head. His life will never be the same. I think to myself how hard it is for me to deal with my illness but I at least have hope of getting back to 100% and a normal life. He not only doesn’t have that hope but also has to deal with the anger of knowing someone did this to him. They did not catch the guy that shot him. Then there is a young woman who has had Lyme disease for fourteen years. She cannot drive, cannot work, and has zero income because of being denied disability. She relies on the generosity of friends and her church to support her. Her family did not believe that she was sick for a long time and they are not supportive. Her mother lives very close to her and she only occasionally speaks to her. I cannot imagine going through this without my parents. They have believed me from the start even though I don’t have any visible signs of being sick. They visit me, call to check on me, pray for me, and are supporting me financially now that my savings has run out. I know they would do anything to help me if they could. I would be lost without them and am so incredibly thankful for them.

I worry about losing my parents. For brief moments I think what I will feel when they die. I grieve their death and feel alone, lonesome, incredibly sad. Then I snap out of it and tell myself that I will experience those emotions when they happen and not to waste time feeling sad now when they are still here with me!

I am very glad I don’t have children to care for while I’m going through this time of being sick. On the other hand, who will care for me when my parents are gone if I need help? In the beginning of my leave of absence from work my thoughts were about my customers, my co-workers, and how soon I could get back to work. Five months later my thoughts are consumed with taking a huge amount of meds three times per day, doctors appointments, daily therapies, keeping my house without going under financially, finding a diagnosis, and getting well.
Everyday activities including keeping up my household are starting to become too much for me. Small tasks such as scooping the litter box, cooking a meal, cleaning the house, and yard work loom over me hugely. Mom came to stay with me for 8 days and it was heaven! Of course we enjoyed each other’s company as we always do but I also allowed myself to let go of the household responsibilities and let her help me this week. She scooped the litter box twice daily, fed the cats, cooked meals, did dishes and cleaned the house twice. She even left me with 15 meals in the freezer. She gave me a foot rub every night. As I lay on the couch with my head in her lap and she running her fingers through my hair I wondered out loud how many 38 year olds lay in their mother’s lap? Mom answered and said "I don’t know but I’m one of the lucky ones!" How sweet is that?! We are both the lucky ones. On top of being sick, my disability was approved for three months and then got denied. The appeal process took eight months as I kept adding new tests as I got them and doctors wrote letters on my behalf, but without a diagnosis or any test result showing anything substantial it kept being denied. Because of my disability being denied my insurance ceased as well and I now pay $488/month for COBRA insurance. That makes sense…"we are stopping your income stream AND making you pay for your insurance"…like where do they expect that money to come from?! Thank God for good ol’ Dad. He and Bonnie have stepped up to the plate and are supporting me while I have zero income.

I wonder sometimes if I will ever get well or is this going to be my life. If I do get well, when will it happen? How many years will I lose to this illness? If I do get well, how will I be changed from this experience? Will I be as carefree as I once was or will I always gravitate towards a more serious stance because of what I’ve been through?

Sometimes I feel like I’m living in a nightmare. I think to myself…is my life really like this?! Is this real?! I used to be the social butterfly and Miss Volunteer and now all I do is go to doctor’s and try to get through each day while going under financially.

Losing my health has not just been one loss in my life…it’s a spiraling effect. Once my health deteriorated my dating life went first, then my social life including volunteering disappeared, then going to church was too much for me, and then I had to stop working, and finally had to move home to Raleigh with my mom because I needed help just getting through each day.
I have become a financial burden on my family. Dad and Bonnie are giving me $5000/month to cover my living expenses and doctor’s bills. Because my disability appeal has dragged on so long and it doesn’t look hopeful that it’ll be approved, I have put my house on the market in the middle of a housing crisis. It’s listed for $43,000 less than I paid for it just one year ago. I’m lucky though that I have a lot of equity so I’m not upside down in my loan…I’m just losing my equity.

I have also decided to move home to Raleigh. I need to do this financially and emotionally. People often have said they hate that I have to be going through this alone in Atlanta when my family is in Raleigh. I used to not be bothered by that. I talk with my family often, sometimes several times per day. But I hit a point recently where I just want to be at home. With the real estate market is such bad shape I expect to lose about $60,000 including realtor’s fees. But I’ll still have some equity which I’ll use towards paying back Dad and Bonnie. I will live with Mom and have pretty much no expenses. If my disability gets reinstated I’ll be able to pay off the rest of my debt and have money to continue my search for wellness without going in debt.

After spending the last year with alternative doctors I decided to go back and try western medicine again. I was immediately put on five prescription drugs and spiraled into a horrible depression I assume from the side effects. I stopped the one drug that I thought started my crying but I didn’t get much better and cried many times throughout every day. I looked forward to bedtime so I could just escape it all. I wonder if I’d rather get off this medication and feel physical pain and be happy or if I’d rather feel somewhat better and be emotionally miserable. Right now I think I’d rather feel the physical pain and be happy…especially since I’m not by any means pain free even with the drugs.

Moving to Raleigh has been great in the sense that I am close to my parents. I love spending time with them and letting them take care of me. But I think emotionally it’s hard because it’s taken away even more of my independence. No matter the reason, I’m still 39 and living with my mother. It’s her house with her decorations. I miss my house and my things.

I’m still fighting to get my disability and it pisses me off that I have to spend my energy fighting for what is rightfully mine. The third party doctors that have reviewed my case and recommend denial often write things in their report that show they are not paying attention to my whole case. Then when I requested a copy of my entire case file (over 300 pages) I realized that my company sent them the wrong job description for me. And I don’t mean just a little off…it is grossly wrong and for sure has hurt my case. So I spend four hours going through each page of my case and documenting discrepancies for my appeal. I’m thankful that I am not too sick to put out this effort in appealing my disability denial but DAMN IT I SHOULDN’T HAVE TO! Some people are too sick to do all that I’ve done to fight for my disability. It would just take so much pressure off of me and my family if I just knew that I had an income while going through this. It’s hard enough to be sick with no diagnosis and no light at the end of the tunnel but being denied disability when you know you cannot work is maddening. It hugely affects me and my family financially but it also makes me feel like people don’t believe me that I’m sick. I wish they could just feel what I feel for one day…just one day! If only the disability would be approved it would validate my pain, allow me to keep my house, give me time to find out what’s wrong with me and fix it. Without my disability being approved I don’t feel validated. I feel like "they" think I could and should be working. "They" that don’t know me, don’t know my work ethic, the pain I live with each day, how much I want to be back at work and have my life back. "They" get to decide my future.

It drives me crazy not knowing my future. I wish I would just get well and continue my life or know that I’ll be disabled so that I can accept it and fit my lifestyle into whatever limitations I’d have. Not knowing what’s wrong with me and losing hope that anyone will ever figure it out drives me insane.

I remember when I lived in Oakwood in my first house. I remember thinking to myself how happy I was. Everything made me happy and I didn’t understand when people described life as "tough" or a "struggle". Small things brought so much joy to me and I was so happy with every aspect of my life. I look back on those days with envy now. My life was so full. Full of friends and family. Full with volunteering at my church, the SPCA, and in my neighborhood. My life has taken a complete 180 degree turn and I don’t know why. Why? Why has this happened to me? How could this have happened to me? Will it ever get better? Will I get my life back? Will I get my job back? My independence? My happiness?

The housing market is in the dumps. I bought my house a year ago for $203K. Dad and I decided it’s best to drop the price to market value so it will sell so I’ve dropped it to $159K. After losing equity and realtor fees I’ll probably be out about $60K, plus the $12K in my savings that’s gone, plus the $25K I owe to Dad and Bonnie. Being sick has cost me about $100K and there is no end in sight…I’m not any better or closer to getting back to work.

My doctor referred me to my third neurologist who set me up to have three consecutive days of intravenous DHE therapy to hopefully "break the cycle" of any possible migraine. Then he wants me to start back on Topamax to prevent migraine activity from coming back. I’m a little scared of Topamax as it’s the drug I feel made me cry so badly. I told the doctor this but he still wants me to try it. I’m crying a lot anyway so it can’t get too much worse.

I tested positive for Rocky Mountain Spotted Fever which is also from a tick bite. That made me suspicious of Lyme again since I had the symptoms, I knew the tests were inaccurate, and I tested positive for a tick born illness and many ticks carry multiple bacteria. So, I decided to go see the best lyme literate doctor that was closest to me just outside of Charlotte, NC. On the day of my appointment, Dec. 11, 2008, I was nervous and anxious as this was a new ray of hope. Dad and I left Raleigh at 4:30am in order to be at I drove to Atlanta to check on my house. The first four hours of the drive I felt so good. My spirits were high and I kept thinking how I could get back to work, keep my house, pay my debt off, and get my life back. Then the last two hours the pain hit. My emotions spiraled downward and I but given up on the Lyme theory since I tested negative three or four times until the appointment felt hopeless again. I see my hopes and dreams of getting back to my job, keeping my home, paying off my debts just going down the drain. When I got to my house in Atlanta the realtor was showing it to a couple potential buyers. I didn’t want them to buy my house. I want my house. But I feel like a stranger in my own home. A visitor. It’s been two months since I’ve been here and it looks unlived in, a little too perfect, like a show home. My gas stove, hot water, cable, and internet were off to save money. My life is in limbo. I don’t know where I belong…Atlanta or Raleigh? Should I lose all my equity and sell the house or should I try let the doctors dug me up enough to get back to work? Should I try to work in pain? Realistically I know I tried that and I just can’t do it long term. Now that I’m here in Atlanta I just want to go home to Raleigh. I feel alone here. If I can’t be here for good and live here and work here then I don’t want to be here. I just want to go home.

In Raleigh I started over with new doctors…my fourth primary care physician, an allergist, and two more neurologists. I had all three hours away by 8:00am. The doctor spent an hour and a half going over my past history of growing up in Maryland where lyme is more prevalent than in southern states, my myriad of symptoms throughout the last three years, and a complete physical examination. Then he diagnosed me with Lyme disease. A diagnosis! Finally! I felt really good about the diagnosis because I truly believed that I could have Lyme, the doctor specializes in Lyme and was extremely confident in his diagnosis, and the CDC guidelines for diagnosis indicate that it should be by symptoms and history rather than the inaccurate tests that are available. My doctor gave me a renewed hope by giving me a diagnosis and also a timeline of getting back to work by summer. Even though he treats a lot of patients with intravenous antibiotics he said I didn’t need that and I could just take oral antibiotics. That was wonderful news because I wouldn’t have the expense and inconvenience of traveling back and forth to Charlotte several times per week and getting stuck over and over. My veins are in pretty bad shape from all the IV therapies I received at the alternative treatment place I went to in Atlanta. So, in December 2008 after three and a half years and forty doctors I felt like I was finally on the road to recovery. I could see a light at the end of the tunnel. I started daydreaming of my future and what I wanted to do…work, socialize with my friends, go on dates, go to church, and perhaps some volunteer work although I plan to live at a slower pace than before in order to take care of myself mentally and physically.

I stated out on pain medications Klonopin, Lyrica, and Lamictal along with mood stabilizers Lexapro and Abilify. This was the first time in 3 ½ years that my pain level went down and I felt so much better. Then after three weeks I started the antibiotics. I felt a lot more energetic and started doing more things that before I didn’t fell well enough to do such as just errands, going to a friend's house for dinner, or going out for coffee or a meal. It was refreshing to feel like I’m somewhat back to life. I cannot wait to get back to work. I daydream about it all the time and wonder where my next job will take me. What new city I’ll get to explore. I even spend time on Craigslist looking at loft apartments in various cities dreaming of living there with my new job. I have hope now. Sometimes when I do too much though I’m reminded that I’m not 100% well. When I do too many things in a day my pain level will increase and my eyes burn and hurt. I still need to rest a lot.

In January 2009 I decided I was well enough to go back to work part time. Plus, my position would be terminated at the end of February if I didn’t return to work. I was thankful that I finally got a diagnosis, treatment, and was feeling better enough to go back part time before my year of leave was up. I’m not sure what position I’ll get as my previous position of Account Rep is very demanding and really can’t be done on a part time basis. They may want me in Atlanta where there is a Motorola office. At first I wanted to stay in Raleigh for financial reasons…staying with Mom for free or low rent once I start working. Plus if my house would sell I’d be able to pay back Dad and Bonnie about $20K. But now I’m sort of hoping to go back to Atlanta as I really love my house there and I love Atlanta. Financially it would be difficult to even pay my bills with working only part time but hopefully it would only be a few months before I could go back full time. Paying Dad and Bonnie back would be a slower process as well.

Well, things don’t always go like you anticipate. Motorola did not have any part time positions available and so I was terminated. The good news is that at the same time I got an offer on my house and am anticipating a March closing. This will take a lot of financial pressure off of Dad and Bonnie as my mortgage and utilities are about $1450/month. I go back to see Dr. Jemsek next week and I’m going to ask him if working part time will impede my progression to getting well. I want to get 100% well as soon as possible and resume my career and life. If working part time will not hurt my healing progress then I certainly will get a part time job and hopefully make enough money to support myself without Dad and Bonnie having to support me at all. It’s hard though unless I get health insurance as my Cobra is costing me close to $500/month. I’m grateful that I get to live with Mom for free. What a huge help and it’s fun too! Sometimes we get into little arguments but we get over them quickly. We are really best friends and enjoy chatting, watching TV together, planning meals together, going out to art events or dinner together. So, it could not be a better scenario considering the circumstances. Of course I’d rather have my own house with my own furnishing and decorations and have my own independence but that will come in time.
I’ve been going to the infrared sauna about four to five times per week as Dr. Jemsek instructed. I’ve also been walking/jogging three miles almost every day at Lake Johnson. It’s really the first time I’ve enjoyed exercising. At Lake Johnson I feel the appreciation of nature. There are loads of trees, lots of water with ducks and geese, and a very cool boathouse with rocking chairs overlooking the water. I feel really good while I’m there and afterwards. It’s a peaceful retreat physically and mentally.

In April of 2009 my house in Atlanta has finally sold! At a $55K loss I’m still glad to get rid of the financial burden. I had $85K in equity when I bought it so I’m really fortunate to just loose equity rather than becoming upside down and owing money after it sold. I got about $35K at closing of which I gave Dad and Bonnie $20K towards the $50K I owe them. I kept $15K to live on for hopefully 9-12 months until I can get back to work and in the meantime it will relieve them of giving me money each month.

It’s June of 2009 and I’m feeling about 50% better. I am excited about my progress! I went to my "voodoo" doctor and she said she was shocked with my progress. We are going to purchase a microcurrent unit so we can treat ourselves at home. I also saw Dr, Jemsek and he was pleased with my progress. He feels we killed the Babesia and are now going after Bartonella. These are co-infections of Lyme that a lot of ticks carry along with Lyme. He predicts that by the fall I’ll be ready for the "healing phase". I’m hoping to be able to get back to work in the spring of 2010. I’m still walking three miles 3-4 times/week as well as going to the sauna to detox 3-4 times/week. I still feel crappy sometimes and certainly when I push myself too much I get some pain and fatigue. I consider this time the "sweet spot" of my situation as I feel good enough to do some socializing but am not ready for work yet. I’m enjoying my time at Lake Johnson exercising; eating lunch on the back deck; sleeping in and enjoying my mornings with breakfast, coffee, and TV; occasionally socializing; and getting a lot of reading done.

It’s August 2009 and I’ve been taken off all antibiotics, pain meds, and supplements until we can figure out what is keeping my white blood count so low. Dr. Jemsek thinks he has figured out that the culprit is Lyrica but I must wait to test my blood again after starting back on Lexapro to make sure my count doesn’t fall again. My eye, cheek, and teeth pain as well as head pressure and fatigue have increased some but it’s not unbearable and I am willing to stay off Lamictal and Lyrica to keep my white blood cell count up. I’d like to be on as few medications as possible anyway. My only fear is that without these two meds my pain has returned a bit which makes me wonder if I’m truly getting better or just masking some of the pain and discomfort. I don’t even want to say it out loud (or write it) but there’s a small piece of me that wonders if Lyme is the correct diagnosis. I want so much to have a positive test to know I’m on the right track and also because it would only help with my social security disability case.

Speaking of SS disability, I got the official denial last week. I expected to be denied because I don’t have a positive test and I’ve read 70% of people are denied their first attempt anyway. My plan is to get another lyme test, get a letter from my treating physician Dr. Jemsek stating I cannot work at any job, and perhaps go ahead and hire a lawyer at this point. It makes me furious to not get the money I’ve paid into the system to have in case I needed it. It has caused me to lose my house, my savings, and put me in debt tens of thousands to Dad and Bonnie. I just want to get the back pay to help pay them back and pay going forward to be able to pay them the rest and start saving for getting back on my feet once I get well. I’d love to be able to pay Mom rent as well to help her out.

My birthday is approaching and I remember last year saying that all I wanted for my 40th birthday was to be well. I pretty much thought I would be as I always thought I was on the cutting edge of finding out what was wrong with me and once I did I’d recover quickly. I’m a bit disappointed that I’m not well yet but am extremely happy that I finally have a diagnosis and am feeling so much better.

August 23, 2009. Rather than driving to Virginia Beach every week like we’ve been doing, Dad bought the Frequency Specific Microcurrent machine so I can use it at home. It should pay for itself within about five months and I’ll be able to use it every day which should be more effective. I’ve been doing treatments every day for about two or three hours per day for about a week now. Sometimes I feel like I can tell the difference and that I’m feeling better and have more energy. And then I have days like today where my eyes are burning horribly and I feel very lethargic. I guess every day can’t be a good day…yet.

I finished the paperwork today for my social security disability appeal. It takes a lot of time and effort to just fight for what I’m entitled to. I’ve paid into the system for eighteen years…just give me my damn money so my family can stop spiraling into debt.

My white blood count went up some this week. Dr. Jemsek put me back on Lyrica and as long as my count continues to rise or stay the same I’ll go back on my supplements and then eventually antibiotics again.

I had a wonderful 40th birthday! I dragged it out three days starting with a very nice dinner party my friends threw for me at a nice restaurant. We had our own private room and they had decorated with balloons, a "40" centerpiece, a beautiful edible art cake, and made me wear a tiara! Fifteen of my closest friends (including Mom) were there and it was so much fun and so nice. The next night Mom made a dessert and we invited a neighbor over to share it with us. The third night Dad and Bonnie took me out to dinner at The Raleigh Times and we ate outside. Then we had dessert and coffee at the Hayes Barton Café and those desserts were HUGE and delicious!!! I really enjoyed myself. It was nice to have something about me that is positive and fun for a change. Now my new wish is to be well before my 41st birthday.

Now it’s September 2009 and my neutraphils (part of white blood cells) have dropped to 0.8 and Dr. Jemsek has sent me to see a hematologist. When I saw her she is convinced it’s because of all the strong antibiotics I’ve been on and for so long. She is doing blood work to rule out autoimmune disorders and I’m scheduled to have a bone marrow biopsy in two weeks which she feels is really just to appease Dr. Jemsek so we can rule out everything before continuing with his treatment plan. She was clueless about the two schools of thought regarding Lyme and the controversy. At least she admitted it as some doctors are too proud to do.

Social security sent me and Dad some paperwork to fill out about my functional abilities. I faxed mine over and then called the guy handling my case three times to make sure he got them and to ask the estimated turnaround time. No return call. What pisses me off is that I can’t call back and leave him any type of voicemail showing irritation or sarcasm because he has control of my case and could deny me! So, I just stopped calling after my three very polite calls. I guess I’ll eventually follow up online or with my local office. Pain in the ASS it is to get the money I deserve. If I got approved in the near future the backpay would be enough to pay back Dad and Bonnie and then I’d receive $2200 per month. I’m living on about $1500 per month now so I could pay Mom some rent and bank a few hundred each month to help when I’m able to move out on my own again. But instead my bank account is dwindling and I’ll go right back to borrowing from Dad and Bonnie in about March if I’m not well enough to work or receiving disability.

I’m doing a lot of house and pet sitting to bring in a few bucks to help draw out the money I have. It’s a sweet gig as it’s totally low key which is all I can handle right now. Just walk dogs, play with cats, watch cable which we don’t have at home, and some homes have WiFi as well! It’s like a little vacation. One family I work for regularly let’s me go to their beach place with their dogs sometimes…all this AND THEY PAY ME FOR IT!!!

I’m doing the Frequency Specific Microcurrent treatments almost every day…two to three hours per day. I figure if Dad spent $2500 on it then I’m going to take full advantage of using it as much as possible. I hate to admit it but it’s been a month and so far I don’t really feel any difference with it.

I’ve realized lately that my recovery from Lyme disease is going to take longer than anticipated. I was hoping to be close to full recovery by now. When I started on pain meds I felt 50% better right away. But I really don’t feel any better since starting antibiotics. I’m wondering if Dr. Jemsek will have to put me on IV antibiotics if the oral doesn’t work. I think even he cannot see how bad my case is. I’m one of the ones who "look" so normal and act normal when around people. I’m not losing physical strength or bed ridden so my case seems mild. But I really hurt a lot. It’s hard for me to remember what it feels like to feel 100%…to just feel GOOD…to feel well enough to want to go out and do things. Currently when I plan something I almost dread it although I usually end up enjoying it as best I can.

It’s November 2009 and my white blood count finally is high enough for me to start back on my antibiotics and supplements. The first week on the ABX I felt pretty good. The second week I felt really horrible with increased pain on Monday-Thursday. Then I felt better than I’ve felt in a very long time on Friday and Saturday. Then Sunday I went back to feeling crappy (not shitty, just crappy). I ate brussel sprouts the Sunday, Monday, and Wednesday of the week I felt bad so maybe I had a reaction from them since according to my ALCAT test I am supposedly allergic to cabbage and they are in the same genus. But my ALCAT says I’m not allergic to brussel sprouts and I read on the internet that there are no known issues of people having allergic reactions to brussel sprouts. Who the hell knows…there is no rhyme or reason for why I feel good or bad…it just happens so seemingly randomly.

Lately I’ve thought about the possibility that I may never improve and this may be the quality of life I have forever. It’s a lot better than some people’s quality of life and I could accept it if I have to but only if I got disability income so that I would stop being a financial drain on my family. But I want so desperately to get well and be back to normal and for this all to be in the past. I want to feel normal. I want my life back. My life is sooo different from what it was four years ago. I was so happy! I owned a home I loved, lived in a neighborhood I loved, had an active social life, volunteered a lot, was active in my church. Now, I just try to get dog sitting gigs to make a little money to help my family not have to pay so much for me. My days consist of doing two hours of microcurrent, dog sitting, running a couple errands, eating, showering, reading, and watching TV. I guess that doesn’t sound too bad except that I want my days to consist of working in a career that I love like I used to…making good money so I can get back to having my dream house in my dream neighborhood, socializing, volunteering, and going to church. I guess this is my time to feel sorry for myself. I AM grateful for what I do have…support from my parents (financial and emotional), feeling as well as I do and having the quality of life as good as it is (many people are so much worse off than me).

I look for jobs and when I find one that I would apply for if I were well I get excited and look on Craigslist for a cool apartment in the city where the job is based. I imagine myself getting a great apartment and living in that new city and starting my life again.

Lyme - My Medical Misery

Thursday, January 6, 2011

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Lyme - My Medical Misery

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