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Sun, Jun. 7th, 2009, 10:32 pm
Between The Rabbit And The Tiger

I've been sick for so long wellness seems like a dream I had, a fond memory long gone in another lifetime. Everything changed, my schedule had to be adjusted for extra rest, fewer fun activities, and more recuperation time afterward. Yet I'm still determined to get better, so much so that I still hope to attend "bodyguard bootcamp" in the fall, along with regular college classes.

It was disheartening to learn some of my friends don't believe me. They think I'm just a hypochondriac, that the constant joint pain and fatigue are nothing more than lack of motivation. I won't deny a certain human laziness when it comes to things like doing chores or studying, but when I'd rather sleep than dance or spend time in a beautiful park? Yes, I get depressed and that makes me more tired, but it is because I can't do what I want that depression first sets in.

I love to eat but I'm often nauseaus now and lack of exercise is making me fat. My stomach always hurts. I hate being out of shape.
I don't have the energy to take care of all my chores to my own satisfaction, meaning I have to live with a less than sparkling kitchen or a dusty home at times and this makes me dissatisfied with my home.
Everything takes so much energy! I can't go shopping for more than an hour because my ankles kill me. I can't surf the internet some days because my hands hurt too much to navigate a mouse and type. On bad days I need help to open jars, which really pisses me off since the ability to open any jar (from my pharmacy days) was a point of feminist pride for me. Dancing is out, so I have stopped going to clubs because I found it depressing to watch without participating. My retired father walks circles around me when we go for morning strolls at the mall.
My balance is messed up. I fall on things and over things. I have to use a straw to drink from a glass so I don't smash the glass on my teeth. Sometimes the straw stabs me in the tongue. My hands drop things.
Concentration is difficult. I have a hard time learning things. Everyday things sometimes slip from memory. College classes loom impossibly difficult in the near future. How will I be able to study and learn?

This is not 'just growing older' as some people say. I know something is WRONG. I don't know what it is, but I am hopeful the doctors can help me before too much of my life slips away. Friends who don't believe when you are sick are not the kinds of friends to keep.

Mon, Jun. 8th, 2009 03:15 am (UTC)

I believe you.

Mon, Jun. 8th, 2009 03:12 pm (UTC)

Have your doctors explored the possibility of some sort of auto-immune disorder? It really doesn't explain the nausea, but the fatigue and joint pain definitely sound like it. If we talked about this before, I do apologize -- my memory is going into the shitter lately.

If you're up for it, we should get together sometime. The house crap is finally settling down.

Mon, Jun. 8th, 2009 05:35 pm (UTC)
jadxia: Would totally like to hang out!

Welcome to DC (or any) free health care. My appt with the rheumatologist is not until the end of June. He's the one who will look at auto-immune disorders.

We ruled out neuro and MS and lyme disease.

Fri, Jun. 26th, 2009 02:33 am (UTC)
(Anonymous): Illness

Have the rheumatoligist screen for celiac disease. It is an inability to digest gluten, the protein found in wheat, rye, and barley. The NIH says 1 in 132 people have celiac disease, although most doctors will tell you it is 1 in 20,000. Do some research. You will probably have to get aggressive to get the doctor to do the tests.

Fri, Jun. 26th, 2009 03:30 pm (UTC)
jadxia: Re: Illness

My one doctor says fibromyalgia, which is pretty much what they tell you that you have when they don't know what is wrong.

personally, I'm a little worried about lupus.

Fri, Jul. 6th, 2012 02:19 am (UTC)
Colleen Kelly

I too suffer from debilitating fibromyalgia. It's a horrible disease to deal with especially when no one believes you. I'm constantly told to just get over it, its all in my head, I just want to be lazy etc etc. I can't hold things for very long because I'll get horrible cramps in my hand or my hands will shake and randomly drop things. So far my doctors have been unable to find a combination of medications that decrease my pain. It gives me hope to read the stories of others that suffer from the same afflictions. And now I am going to go make your recipe for naan! It is one of my most favorite things ever along with some delicious homemade tzatzki, I'm in heaven!

Fri, Jul. 6th, 2012 03:06 am (UTC)
jadxia: Things Can Get Better

I'm doing well on Cymbalta and Ultram, (I know others tried Lyrica but my insurance doesn't cover it). They are going to put me on pain management, and I'm looking forward to it. The 3x week stretch class, although it was painful at first, really helped. I'd take a class, then right after it take my Ultram. I usually didn't have pain right after class, and by the time it hit (with a vengeance) the Ultram kicks in and dulls the edge. Stretch class is like yoga without the strength exercises.

Fri, Jul. 6th, 2012 07:09 am (UTC)
Colleen Kelly

I'm also on Cymbalta and a myriad of medications to calm down my nerves enough for me to get comfortable at night to sleep. I was diagnosed back in December, but I've been dealing with it for years. I'm on pain management protocol which allows me to chase after my 10 month old for part of the day at least. On top of my fibro I also have some unknown disease that affects my bones. If I break a bone it takes years to heal (so far 3.5 years later I still have a break in my kneecap that hasn't healed) and my body is slowly eating my bones. I've seen a dozen doctors and none know what is going on. I've been on lyrica, but had horrible side effects from it and while my insurance covered part of it I was still left paying a large chunk out of pocket. You can try a drug call neurontin (generic name gabapentin) to help deaden the nerves, and muscle relaxers seem to help also. If I remember correctly Ultram is an anti-inflammatory which can help, but it doesn't do much to the nerves. Before things got really bad for me I was going to school to become a pharmacist and now I'm a stay at home mom.

Fri, Jul. 6th, 2012 07:52 pm (UTC)
jadxia: I tried Neurontin first

most horrible side effects ever, and then I had a reaction to it where I couldn't breathe. Bleh.

The bone disease definitely sounds auto-immune in nature. I swear something is eating my cartilage.

Pain is such a tough thing. No one who doesn't have it chronically understands how really traumatic it can be.