posted
I'm sorry about feeling sorry for myself, but I'm in a bit of trouble here. I can't take antidepressants or even SAMe, etc. because I break out in a full-body rash.
I had the bullseye late 90's (probl. '98), no symptoms so I was given no abx by MD. Forgot about it until 4.5 years later when symptoms started. Tests were neg. so 4.5 years went by before I diagnosed myself based on info I found on the web. I've been treated by 2 different LLMDs for 1.5 years and no change so far.
I was healthy before all of this. I ruptured a disk in my cervical spine 15 years ago, but I had surgery and was fine after that. I also had minor knee surgery about 15 years ago, but that worked, too. I was overweight, but worked out every day and was in good health and condition. I loved my job and had just married a wonderful man and became Mom to his two little girls. Life was wonderful when I developed the pneumonia that started the symptoms rolling.
My symptoms are many (I know that all of you have most or all of these symptoms and more, and some of you are much more severe than I): severe fibromyalgia symptoms (full-body pain, fatigue, IBS, insomnia, muscles very sore and fatigued, headaches, migraines, etc.), small and large fiber neuropathy which has worsened a lot in a short time, with the burning, tingling and stabbing pain, and numbness. Autonomic neuropathy with very slow digestive motility.
Lost my gallbladder the first year. I developed Raynaud's which gets more severe every winter. After the first year with Lyme, I had a seizure, an abnormal brain scan, then a normal one. But I didn't really develop true ``brain fog'' until summer, 2007.
I developed a nerve pinch under my left leg that makes my entire left leg feel like it is asleep all the time. It's also painful. This gets worse whenever I sit, but I can't stand for long either, because my lower back can't take it. 10 min. standing is all I can handle. I have a nerve pinch in my left shoulder that is much more painful than when I ruptured the disk. Lately, I have started to feel these same things on my right side in the same areas.
Last spring, I fell asleep for one hour, leaning on my left arm. When I woke up, I couldn't move my left hand. I had compressed the radial nerve to the point that I lost the use of my left hand for 2 months. The doctors didn't believe that it was just one hour of leaning on it. I know, because I looked at the clock just as I was drifting off, and looked when I woke up. And my husband was there and he knew how long I was out.
I have severe arthritis in my neck and I can't turn my head to the left. I have degenerative spine, scoliosis, bulged and deteriorating disks, etc. I also have arthritis in my right arm from the wrist to the middle of my forearm, and in my right hand and fingers. I have arthritis in my knees, again, terrible pain. My knees drop me pretty often. Four years ago, my knee doctor did surgery and afterward, asked me how I got so much arthritis in my knee. He was serious.
I also have arthritis in my feet, and I developed bunions almost overnight. Last winter, my toes started to move and when I noticed it, I grabbed a pair of Birkenstocks and compared. Sure enough. Now they've moved so much since then that my big toes are underneath the others, and they've all moved so that they point to the outside. Trying to get comfortable shoes is a joke.
I had very thick hair which is almost gone, I've lost so much. My fingernails can't grow (always crushed past nail beds). I lost my eyebrows. I have brown and white spots all over my body and my body color overall, has gotten darker. I have reduced function in my hands (making it hard to wash, etc.) and my face always feels like it's been out in the cold for a long time (hard to form words, etc.). I am always cold. I have air hunger even though I've been treated for Babesia. A lot of the time, especially when I wake up, I feel weak, like I couldn't possibly do the things I need to do.
I get an itchy rash every month or so, around my left ankle. To me, it feels like this is where my body is indicating the cut should go. Since my left leg is asleep all the time, my left foot feels like it isn't even a part of my body.
I have blepharitis and corneal abrasions and my eyesight keeps getting worse. I have light sensitivity and hearing loss. I have dental decay that develops quickly.
Two years ago, I lost 110 lbs. for no reason, and it has stayed off (which is good, but diet did not change and I do not get much exercise). And this has caused some pain and discomfort from loose skin, etc., but has helped my joints. It is scary that I can eat so many calories but still be thinner than I was in high school.
Summer of 2007 brought a brain fog that scares me. It feels like 1/2 of my brain is locked up and the rest is just cloudy. The spelling area of my brain was untouched. But an anger level opened up and I don't like that. I forget things but what scares me is when I forget whole days. Last Friday, I drove my mom to the doctor and spent the day with her. I have no memory of it. She talked about it yesterday and I had no idea what she was talking about.
I have to rest often. Otherwise, I try to be fine for my family. I try to hide what I can. They obviously know I'm sick but life goes on. But I am not with the family as much as I would like to be and I feel so bad for letting them down. We had only been married 1.5 years when my symptoms hit.
I've pulled away from all my friends and I stay away from social situations. I have trouble understanding conversations. Email is good because I can take my time. But to write something takes me hours and hours (that's another thing - everything takes me so long to do and I can only do one thing at a time. I used to be the best mutitasker). My friends have drifted away now and I only have a couple of family members (my immediate family and my mom).
I've lost a lot of my abilities. I was a computer specialist and I lost a lot of my left brain and all of the knowledge that I had (I was the person to go to when no one else could fix the problem - both hardware and software). I lost a lot of my coordination and musical abilities. I even have trouble with lists. When there is a list of things for school, or to pack, I don't know what to do. I get confused so easily. Sometimes, I can't even figure out what to wear (remembering the right things to wear). When that happens, luckily, my husband helps me.
I'm on SSDI but lost disability through work because I couldn't get a doctor to fill out forms (except my psych). And they don't give out mental health disability for longer than 2 years. My husband has lost his job twice in the past 5 years (I live in Michigan and we were economically depressed a few years before the rest of the country caught up). He has applied all over the country but there's just nothing. He has been doing sales but no money has come in yet and it's been 5 months. I bought Cobra but there is a limit to that and it is expensive. I have no dental insurance and I keep forming decay under my bridges and crowns despite my care. We may lose our home.
I've been treated for Lyme since May, 2007, but I've only continued to get worse. Just as I was about to start IV abx, the doctor died. It was a terrible loss to the community.
So...the future. Let's say that I did start to get better. What is going to get better? Nerve damage and dying is permanent, so my neuropathy will only get worse. The nerve pinch pain and numbness, tingling, etc. will always be there. The degenerative spine, bulged disks, scoliosis and all the back and neck pain is permanent. The arthritis will not go away and the damage that has been done to my knees, feet, hands, neck, back, etc. is permanent.
Will I get my brain back? From everything I read, it sounds like alzheimer's is a real possibility, since we only go into remission and are never really healed. My uncle had Lyme, had knee surgery and when he woke up, he didn't know who anyone was. Also, he was violent, which was not a part of his personality before. He had to go into a psychiatric hospital. He thought my aunt (his wife) was his brother. He died a few years later.
My symptoms are Lyme related. These things don't run in my family. My mom, who is 82, has no arthritis. She is very healthy. Everyone in my family is strong and healthy and live long lives. I was too, before all of this.
I won't have the money to afford the treatments I need - I don't even have it now. I am almost 50. Your 40s is when you make your big money, but our 40s has just been illness and job loss. We have very little retirement money. What I get from SSDI is not enough to live on and pay medical bills now and in a couple years, I will get even less.
I know that life isn't fair. But I find myself not having any sympathy for people who have serious illnesses that the medical community respects and takes seriously. I know that things will change some day, but I won't be here to see it. It looks like all I can hope for is the ability to afford assisted suicide some day, when it is time (before my mind is gone). And the hope that they will accept me since my disease doesn't officially exist.
I know many of you are in worse situations. I apologize for whining. But I've lost so much and I've lost the will to fight it with so few resources available. I don't want my family to suffer, either. Thanks for listening. And if you have any answers, I would love to hear them.
P.S. I do take medication for pain, fatigue and for the dry symptoms (eye, mouth), motility, neuropathy, abx, diflucan. I take supplements for everything, but will have to cut back a lot now without money.
Posts: 45 | From Grand Rapids, MI | Registered: Aug 2007
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posted
My God..... poor you. I am so sorry and have no words to help you at all. Its all so awful.....
Posts: 234 | From BC Canada | Registered: Aug 2008
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I am so sorry to hear about your struggles. I am new to treatment 8 months but have severe symptoms since treatment began. I probably had lyme for a long time.
I know people have gotten better as I have read. I come hear for support and have definitely been welcomed and helped.
I will be applying for disability but medicaid is also with that?
Have you been on aggressive protocol? Are you taking supplements too? Can you take natural supplements for depression?
Kindly, Barb
Posts: 167 | From USA | Registered: Jul 2008
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posted
Believe me --- I know where you're coming from! In fact, I just posted (well, okay --- ranted)alot of similar frustrations and worries this morning.
I'm 51 now, and my 40's were also a decade of job losses and health issues. I wish I had been healthy enough to have been able to sock away some $$$ for now. But that was not possible.
It is scary. Every day I'm scared. Some days worse than others.
I wish I knew what words to say; all I can think of is that somehow there is some strength and comfort here in that you are not alone.
I wish that our lives didn't have to be like this, that there would be good treatment, affordable treatment, understanding, compassion for Lyme.
PM me if you like.
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I'm so sorry for your struggles. There's nothing wrong with feeling sorry for yourself dear! From time to time we need to grieve for ourselves and our situations - it's only natural.
I read something the other day by Connie Strasheim titled, "It's Never A Good Time to Be Sick" and it really hit home with me.
She talks about the child with Lyme, the teen with Lyme, The twenty-somethings with Lyme, and finally those in there forties and fifties.
I'm twentynine and I've been sick for half of my twenties. I get depressed and frustrated b/c I can't keep up with others my age. I want children, and wonder sometimes if I'll ever see that dream through to a reality.
At your age you should be at the point where you can finally kick back and relax. You've worked hard, paid your dues and raised your children - but instead you have to fight this crappy disease. It isn't fair, and I'm sorry.
I hope things turn around for you soon.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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