Chronic/Terminal Illness Thread

[TxCat]

It is my hope this thread will provide a place to discuss chronic or terminal illness: how it impacts your life, suggestions for improving quality of life, or just to share the good/bad news.

Definitions:

A chronic illness is a condition which is either always present or reoccurs and limits enjoying life fully. This can be anything from appearing in public (as with some skin conditions such as dermatitis and psoriasis or engaging in atypical behaviors) to physical or emotional limitations. Some examples include but are not limited to fibromyalgia (FMS), epilepsy, autism, lupus, arthritis, alopecia areata, and autoimmune disorders.

A terminal illness is one which results in drastically shortened life span for the sufferer. The most common one is cancer but certain other conditions such as Ehlers-Danlos Syndrome, sickle cell anemia, and other disorders also qualify.

Both of these have far reaching consequences for both the sufferers and their loved ones. This thread is the place to address that and to so freely.

Some basic guidelines:

1. MS and HoS rules apply, of course. Might want to re-read 'em before posting.

2. Don't judge. People with the same condition may cope differently, have different symptoms, and have different treatments.

3. Be careful with suggestions. What works for you or your loved one may not work for others or may not be feasible. Be careful about implying that if someone does something or tries something, they'll be cured. Many of these conditions have no cure nor even a remission.

4. None of us are qualified to give medical advice. If you have serious problem, see your family physician or specialist.

5. Pain scales are often helpful to provide a frame of reference. These are the standards used by medical professionals. This site explains in detail how the numbers may be compared or translated into feelings. I prefer the weather scale:



Or this one from Hyperbole and a Half.

6. Please explain your condition as best you feel comfortable and provide scientific/medical links. This is so the rest of us can understand what's going on and saves you from having to endure endless questions or suggestions you cannot use.

Topics for consideration (not inclusive, just suggstions):

- diagnostics
- treatments
- alternative treatments
- preventative maintenance
- loss of function/life activities
- resdiscovery/alternative means of doing life activities
- comfort foods/stashes/kits
- things to do/avoid which help/don't
- remission/relapse

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I was born with EDS type III. This means my body doesn't produce collagens properly (the stuff that makes skin and other tissues elastic and responsive). My skin is stretchy and velvety instead of smooth and I only have three layers instead of seven. Small cuts are a big deal and need stitching or gluing where normal folk could put a band-aid on the cut and leave it. My blood doesn't clot properly either because of this. I dislocate joints a lot, mainly the hip and shoulder but sometimes fingers, toes, and elbows too. I bruise easily so early on my mother had to worry about people reporting my father for child abuse and spouse abuse (it's an inherited disease and I inherited from her).

It didn't bother me too much until I got older, when the tendons and tissues in the back and spine began to deteriorate. Eventually I lost the ability to walk (though I still have most of the feeling in my legs) and had to use a wheelchair. For a while I used a manual wheelchair but had to get a power chair because the effort of pushing the manual one around kept dislocating my shoulders and tearing the rotator cuffs.

I try not to let it bother me too much and keep a positive attitude. The motor chair allows me to go most places other people can get to without relying on someone else's help and in the few places which aren't handi-access I can usually use a cane or my crutches for short distances. The joints hurt and so do the collapsed discs so I take a combination of arthritis medications and pain medications.

I also have epilepsy (temporal lobe variant), fibromyalgia, and metabolic failure. These are all directly related to a brain injury which occurred when I contracted bacterial meningitis at age eight. The hypothalamus, which controls the pituitary gland which controls the endocrine system, is dead. That means it can't regulate any of those other organs.

Currently taking two forms of chemotherapy for autoimmune disorders. It was a catch-22 situation: either further depressing the immune system and possibly shortening life span or dying of repeated infection as the skin deteriorated.

A good day, to borrow from a song, is any day that you're alive. I take 'em one day at a time and treasure each one but...sometimes I'm tired. I'd love to just say 'enough is enough' and stop the fight but I can't. There are too many friends and family depending on me.

So there you have it. What about you?

[Soleil]

I actually have a question for you... do you take Lyrica for your fibromyalgia?

See my mother and my maternal grandmother (so far not me...*crosses fingers*) both have fibromyalgia and my grandmother took/takes Lyrica with no issues, however my mother was prescribed it and took it for a month. She ended up always tired, massive headaches, dizzy, nauseous, EXTREME anxiety, and the shaky limbs... all of which are side effects so she stopped taking it.

I don't think my mom's fibromyalgia is as bad as my grandmother's though because my mother never has the random muscle pains that my grandmother has... well plus she also was diagnosed with Multiple Sclerosis a few years back.


So I was just wondering if you had any experience with Lyrica in treating your fibromyalgia... I keep wondering if/when I'll get diagnosed with it since it's apparently hereditary? I don't know!

[TxCat]

I actually have a question for you... do you take Lyrica for your fibromyalgia?

I do, and I had issue with it too but it's the best they can do for me. My first prescription for the FMS was Cymbalta and prescribing it for FMS was off-label. That one actually put the disease into remission but it damaged my blood vessels. I developed extremely high blood pressure (166/100) which no medication could combat so I had to come off of it. The doctor had to fill out a special form and report the problem to the FDA which was mildly interesting.

I never again did regain normal blood pressure. I take a hypertension medication and my blood pressure fluctuates wildly, sometimes way high and sometimes so low I faint.

When I was put on the Lyrica, the recommended dosage was 200 mg per day, split into doses exactly twelve hours apart. The side effects, aside from the tiredness, were mild but I rapidly found myself suicidal and I didn't know why. It disturbed me that I could think of nothing but death so we went back to the doctor and reported it. Turns out that side effect is not limited to just teens. He cut the dosage in half to 75 mg per day twelve hours apart and it's better, though I still suffer a depression I did not have before. Unless there's a really bad weather formation or I get a flare, it does well enough to control the pain and other symptoms. I'm comfortable and this past week was the first time in over a year that I'd had a fibro flare. In fact, it had been so long I almost didn't recognize it. According to the latest studies, Lyrica is effective to varying degrees for about 75% of the patients who take it. For the rest it either doesn't help or the side effects were prohibitive.

It sounds, unfortunately, like your mother fell into that category. Has she tried dietary alterations? I've found that artificial sugar replacements, caffeine, sugars, and refined flours are big culprits in aggravating the FMS. Most of my diet is now unprocessed foods, about half of which are dark green and leafy vegetables and the remaining third proteins with the remainder devoted to 'hard' dairy (such as cheeses), fruits, and nuts. It doesn't work for everyone, but it worked for me.

Ironically, cider vinegar supplements seem to help dissipate the muscular pain as well. I take Bragg's which is organic and still has the 'mother' (the substance from which the vinegar was 'grown') in it. 3 TBSP to an 8 oz glass of water, which you can dilute with honey if you don't like the taste. I drink the stuff three times a day. While I wouldn't call it a cure, it does seem to prevent the worst of the aches even during a flare.

[Soleil]

It sounds, unfortunately, like your mother fell into that category. Has she tried dietary alterations? I've found that artificial sugar replacements, caffeine, sugars, and refined flours are big culprits in aggravating the FMS. Most of my diet is now unprocessed foods, about half of which are dark green and leafy vegetables and the remaining third proteins with the remainder devoted to 'hard' dairy (such as cheeses), fruits, and nuts. It doesn't work for everyone, but it worked for me.

My mother is the kind of person to just deal with it as long as it isn't life altering, like her migraines are. She couldn't do without caffeine.. at all! She is an extreme Dr. Pepper addict, like to the point that when she doesn't have at least 2 a day she gets massive migraines and can't even focus.

She really doesn't even get flare ups very often, so I'm not sure how severe FMS is in my family. I know with my grandmother, hers are elevated because of the MS. I think my mom has had flare ups about 3 times this year, so her FMS is not that bad.

[TxCat]

I get flares about once or twice a year now, unless there's a severe/extreme weather change or I get sick. Of late, with everything else wrong, it's kind of hard to tell what pain belongs to which illness but you get a vague sort of intuition about it after a while.

I have found that there are kinds and degrees of pain and that one illness will cause one sort (the FMS, for instance, is responsible for the muscle knotting and soreness in localized areas) while another will cause different pain (the EDS causes shooting pains along the connective tissues in the bones and it's more of a sharp point than an ache).

For migraines, I take feverfew. It doesn't stop them completely but it does mitigate them to the point I can still function. I'd rather deal with the not-quite-headache than the full blown migraine which is also likely to trigger seizures. I'm immune to the effects of caffeine unless it's being used in the medicinal sense so I do, on those occasions, consume soda or a similar drink (energy drinks are my preferred treatment).

I have found nothing which helps the memory loss. My short term memory is really bad but my long term memory is excellent. It's the small day-to-day things I have problems with, like where I set my cup of coffee and --- on really bad days --- where I was going and what I was doing. It makes for some badly half-done projects scattered all over the house.

I make lists, lots of them, and keep them in notebooks I can find easily so that I can remember what it was I was doing and what still needs finished.

[Soleil]

The only thing (so far) that I have "inherited" from my mother in terms of her illnesses is the migraines. Thankfully though, I don't get them very often, but when I do they are horrific. I haven't been on decent enough insurance to want to go to my mom's neurologist to see if there is a chance that I could get a prescription for her medicine. She/We take Maxalt and it works WONDERS. It tastes horrible, like chalky vomit, but because it is a disintegrating tablet the medicine starts working within like 20-30 minutes.

Other than meds the only thing I have found that combats my migraines is sleeping. I actually had a professor in college call me a liar because I missed class one day due to a migraine. She said without a diagnosis I shouldn't be skipping class because of a headache. Needless to say I hated that woman... >_>

[TxCat]

Because of all the other medications I take, migraine medications are contraindicated. I went to the ER the first time I had one and the attending sent me for a CT, patted me on the shoulder, and whispered to my husband that I had 'female issues' which if properly attended to would dissipate the 'so-called' headache.

[Soleil]

I love how idiotic some hospital workers (not necessarily doctors) can be!

When my great-uncle fell ill in December last year they said it wasn't anything, nothing serious at all. Because, we all know that it's completely normal for a seemingly healthy 80 yr old man to fall down unconscious and not wake up for 7 hours (long back story, involves lazy great-aunt that didn't go look for him) until he was in the ER.

So they dismissed him from the ER and not a day later he was back in the hospital, admitted this time, because his organs were shutting down and they "magically discovered" these masses around his pancreas and kidneys that had attached to his spinal cord. Pancreatic Cancer that had been there all along, but they hadn't seen it until now. He passed not 2 weeks later.

I highly doubt they could have done anything, but I hate it when they say that it's "nothing serious" without double checking everything. It isn't like we didn't have money, he was rich due to his profession early in life, so they could have done all the tests, but they said the scans were not necessary and the cancer wasn't found until he was near dead.

[NorthernLady]

I actually have quite a few chronic illness I am managing well.

First one: I'd say, is my back pain. It was caused by High School (Probably, only thing I see why!). I think I estimated 50lbs of textbooks, and notebooks 1 mile a day, really like killed my back. Back then, that 50lbs was just under half my weight. I am small person, and I had to carry that everywhere. I have two major pain issues, lower back, where the curviature is, is shot. Bad posture makes it show up. Other place, only hurts when too much weight on back.

My management for both: Try to keep lower back comfortable as possible. I often change position on this. Lumbar support does not help at all. If so, I need very small lumbar support. I have two pillow pets that serve this purpose, and nice moldable pillow I use. I take Neproxin, or Advil if pain is still there. First, I try my pillows and better position.

At work: I don't mention about my back at all. Going through hoops just to get stuff done, is too hard. (I really don't like how Native Hospitial does it, but hey, it does prevent some idiots doing stuff on their back!) But I do a lot of breaks. Heavier boxes, I use the washer machine, the Q-ing machine cart, and the front counter as breaks. Yes, I lift properly. If I cannot carry it, I yell for help. Trash is normally done by momentum, and leverage. (quickest and easiest)

Second one: Rather recent, about 3 years old. I had Bell's Palsy, but it caused a couple issues. Main one is TMJ. This one, I cannot manage at all. Some doctor/dentist (cannot remember which!) told me how to, but I looked at one thing: "Do not open mouth more than 1 inch." How in the heck I'm supposed to talk, and eat? It pops even a quarter amount of that. I can pop my jaw while yawning, eating, talking, or even just moving it. Some days it's very painful, and no amount of pain medications will help. Oh, I should mention, when it does pop, it moves to the left. I also dislocated it slightly before...

Third one: I am actually overdue for another episode of this. I have bursitis (confirmed) on my right shoulder. It's on going, and had two major flareups, and 3 more minor pain issues. I suspect I also have it on my left shoulder, but much weaker, and not worth confirming about it. It's hard to use computer often, because I'm stretching my shoulder out, and very uncomfortable. I try to limit what flares it. Heavy lifting (hey, that correlates with back issues!) Hard pulling of shoulder. I almost forgot how it flares up. Pain part of it is easy. Major and minor episode normally with burning pain, like it's on fire. Major episode, normally is major burning pain, I cannot get rid of.

Manging my bursitis: I do a lot things I shouldn't do, but only in moderation. I am in process of getting a proper office chair, and have keyboard and mouse holder that does office chair limbs. I haven't send link to mother, but that should help a lot. I try to keep position natural. I am just glad it's only once a year thing.

Fourth one: (And last one I'll mention, but will be briefest one) I get frequent sinus infection, especially cold flu season. I can get them any time of year. It is due to the fact my sinus cannot drain easily. I just keep forgetting what should I take to help drain the sinus cavities.

[TxCat]

I think anything which forces you to substantially alter the manner in which you go about your life qualifies as chronic. Most chronic conditions aren't terminal and quite a few others would consider mere annoyance...until you're the one who has to constantly plan and watch to make sure nothing sets your condition off.

I'm a catalog of medical fail. I had bacterial meningitis when I was eight years old. There was no treatment in the 1970s except comfort measures so the fever damaged my brain from the hypothalamus up. All of my endocrine functions are either skewed toward the abnormal or completely nonexistent without medications and hormones. I've been taking some of these medications since I was in my pre-teens.

When I was nineteen I suffered a grand mal seizure and was taken to the hospital when it didn't end. I got a diagnosis of epilepsy, which back then instantly threw you into the category of mentally deficient AND mentally ill (it's no longer classified as a mental illness or treated as such). In later years, as US medical profession caught up with the rest of the world my diagnosis was refined to a type called temporal lobe epilepsy. I have a 4 cm by 1 mm deep band of scar tissue across the left temporal lobe. When the brain tries to communicate with those dead areas, it can't, electrical currents build up, and a seizure results. They aren't grand mals and they don't look like what you'd consider seizures. It often involves random behaviors like picking at a button, shuffling and reshuffling cards (if I was playing a game when it started), aimless wandering, and sensory delusions such as smells and textures which are not actually present. I can talk but cannot respond appropriately and will not follow directions. If cornered or mishandled, it triggers an aggressive fight-or-flight reaction. I've been to jail and to a psych ward several times because people didn't read my medical tag and didn't understand what was happening.

The rest I've already talked about. I'm stubborn, I still try to walk sometimes and I did that with the crutches yesterday. Now every single joint and muscle which can complain is doing so and my knees in particular keep dislocating or subluxating. I keep saying I'm not going to do something like that again but every so often I just have to TRY, y'know?