Chronic/Terminal Illness Thread

[BradTheMad]

I wanted to thank everyone for their prayers. Grandma pased away on the 8th of this month. Is it strange or is it normal after watching someone you love suffer so much to feel like you are all out of grief and strangely over it? I have felt very little sorrow just an amazing lightness and relief like woah the hard part is over. Strange but true.

If somebody is in such pain death can be a relief, not only for the person itself but also those that care about them. I still wish you all the best in your grieving period as I'm certain it isn't completely over just like that. Try and remember her before all this and not her final moments.
Good to hear the hospital was so helpful in the whole process.

I'm glad I now live in a country where I can decide what will happen to me. Because of religious laws I'm not allowed euthanasia but I am allowed any medical procedure that eases suffering. I also have a big list of things to do with my body after I die as it needs be taken care of as fast as possible(soul wandering around and such things)and woe the person wanting to cremate me like my grandpa. I made very certain that side of the family has no say about it whatsoever.

[flamekaat]

TX: Thankee friend. I do reccomend getting everything in order for your kindred. There is no reason that they will not let your ashes come to your kinsmen. Make sure the mortuary that will be in charge is selected and your wishes fully conveyed and paid for then all should go as it should go. As soon as we can go in Marie my other cousin is going to go get the ashes. I don't know if they will go on a day I can go but even so grandma's urn will be in Marie's home to visit any time I wish. So I am not concerned. I have decided in spire of being 30 fairly healthy and not likely to die anytime soon I will start a payment plan for my ending. Nevada does not require embalming nor autopsy as long as I go naturally. So I am not worried about that even though I have no religious objections to my carcass's use after mys oul leaves it. I am in fact an organ donar and if they can use it they can take it. to help people see, live, and go back to being healthy is something I consider worthwhile enough to be willing to do. But that is another thread entirely. I hope that some of your matters can be comforted so you need not leave us so soon. And how is the whole not eating much thing going? Have they got you sorted yet?

[anyanka]

Well, I'm not exactly diagnosed, but I have a fairly accurate idea about what's going on with me. It started around November, I think, and has escalated from there. I unplugged my headset (seeing as I had been listening to music) and found that my ears had this ringing noise. From that day, I quit wearing headsets, and became more careful about the volume of my music. It went on like this for a few months, until my mother took me to the doctor, seeing as it didn't go away. There, we found out that my eustachian tube had aquired slime in it, which caused increased pressure in my ear. I was given medication on this, but it quickly returned when I was finished. I went back to medicines, and was supposed to quit when I felt improvements, but seeing as I have caught a cold I'm back on them again.

Now, the only way it affects my life is when it comes to loud noises. I have to be more careful than the average person, and I cannot stand lots of sound for an extensive period of time, regardless of the volume. My hearing is also a little bit lower than it should be.

[SleepySpaceDad]

Well I've been in pain due to my 45 degree scoliosis for seven months now but getting better. It all started in September of last year. I was on a school overnight trip to someones mountain house and fell onto my back getting of a huge boulder where we had just been doing some nature studies. Well I shook it off and was fine, but a few days later my back is killing me. After a ton of doctor appointments and PT I'm here just had my (hopefully) last PT session. My back still hurts, but I have done all full days of school this week. Alas, I'm more sore than usual in my back and my muscles are sore from PT.

[MightyOak]

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.

-----------------------

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!

I have fibromyalgia and have a specialist in Los Angeles. When Lyrica first came out doctors started prescribing it to all their patients with fibromylagia or the patients asked for it, having seen the commercials. (you would not believe how many people called me to tell me about the drug after seeing an ad) I didn't want to take Lyrica without talking to my specialist about how it works. There are pain medications that help by effecting the body and some that help by effecting the brain and how it perceives pain. I wanted to know which it was first. When I went into his office and asked him about it he was so glad I hadn't started taking it. Apparently he had had quite a few patients start it and the suddenly had a lot of psychological problems. Gambling and sex binges on the verge of being called addictions were the two worst symptoms he had seen and told me about. Lyrica works by effecting the brain, not the body, so I never tried it.

I am on the Guaifenesin treatment. It is not a medically proven method, but it seems to have helped me a bit. I was diagnosed at 14 and bed ridden by the time I was 15. I started this treatment at 17. I am now 26 and mobile. I get a bit better all the time, but I certainly do not have a normal life. Here is my doctor's site if anyone is interested: http://www.fibromyalgiatreatment.com/GuaiProtocol.htm

As I mentioned I was born with Ehlers-Danlos Syndrome. The diagnosis designates a group of genetically inherited connective tissue disorders (connective tissue is the stuff that holds your muscles and tendons on the joints and what parts of the veins, arteries, and other organs are made up of). It's an extremely rare syndrome. When initially diagnosed I had type II/III;

I was diagnosed with EDS years ago, but I can never remember which number it was. I know it's the least severe one. I'm just more bendy than I should be and it means I can get injured more easily and my joints are often sore, just not getting the support they need, but that's really it. And the soreness could just as easily be the fibro. Hard to tell where the line is.

[Karzarill]

I have in these past months battle with digestive problems and other things, I found out what there was wrong with me roughly a month ago. It turned out I've inherited chronic IBS from my dear mother, it runs in the family on my mother's side her mother had it too. Sadly this have affected my eating habits in ways I don't like. Is thank goodness not something that'll kill me. Having finally found out what's wrong with me sadly also meant I had to start taking fiber supplements since I need a lot of fibers for my stomach to function properly. I also can't drink a lot milk (which I love) anymore since it makes my stomach really upset, I can drink cocoa mixed with milk tho without any problems, the cocoa don't seem to upset my stomach at all. I'm still learning about all this and I thankfully have my mother to consult about this problems since she knows how it dealing with it and knows what to do.

[Psychologic]

I was born with a chronic kidney disease.

As a small child my life was devoted to the hospital. I had immense fevers, tremors, and even fell into a couple of comas. The doctors (until I was about eight) was puzzled by my condition. They believed it was something neurological, and spent most time tapping my spine, or scanning my brain. This gave time for my kidneys to fail.

When I was finally diagnosed I was treated immediately, and was kept on heavy watch. I missed almost two months of school from having to be monitored by doctors. When it was all over my left kidney was revived, however my right kidney suffered large amounts of scarring and now only works at a 30% average.

The pain can be unbelievable at times. At using the bathroom can be a hell. The only cure is to get it removed. But I don't believe it'd be a good plan, as I don't wish to be on diagnostics. So I've decided to put up with the pain. There is a risk they will fail again, and I will most likely have to get the right one removed when I'm older.

I just hope I can keep them going a bit longer.

[BradTheMad]

I just hope I can keep them going a bit longer.

Well a friend of mine got lucky with his kidney (a replacement from his own mother) as it is still going strong after a few years. I never knew that they only had so long.
Stupid me, I thought that once you got a kidney from a donor it would be okay for the rest of your life as longs as you'd take the immune suppressors.

Over here in the Netherlands doctors are making great process on an artificial kidney that can be carried around so you do not need to spend so much time in hospital. There is a major shortage in donors so researchers are looking for alternatives.
Hopefully somebody in the future bio-engineered body replacement parts. I have a few on my wish list

[Psychologic]

Well a friend of mine got lucky with his kidney (a replacement from his own mother) as it is still going strong after a few years. I never knew that they only had so long.
Stupid me, I thought that once you got a kidney from a donor it would be okay for the rest of your life as longs as you'd take the immune suppressors.

Over here in the Netherlands doctors are making great process on an artificial kidney that can be carried around so you do not need to spend so much time in hospital. There is a major shortage in donors so researchers are looking for alternatives.
Hopefully somebody in the future bio-engineered body replacement parts. I have a few on my wish list

People with donor received organs don't usually live as long as the average lifespan. I know that someone with a heart transplant has on average five to ten years. People who get other major organ transplants (liver, lungs, etc..) usually can live a relatively normal lifestyle, granted of course they take the proper precautions. After any transplant it's a long and slow process, your friend probably had to be on watch for the first couples of months. Since even if it was his mother's kidney, it still might not be an 100% match. If so, it might not have been working properly (filtering the system) or in extreme cases, they've been known to give out. All these risks sound silly to me, I'd rather have my own organs, no matter what shape their in. (Unless it was mandatory in a life or death type deal.)

Hmm, here in Canada we haven't be able to get to such science. (Or if we have, I don't know about it.) I hope something like that really does end up working, that way there can be no risk of complications.

Haha, I got some on mine to.

[BradTheMad]

I knew about the risks involved and the heavy immuno-supressants somebody has to take. I also knew that donor-organs have an expiration date(crude but true) but kidneys really have a short new life, that just surprised me.

The people I know besides this guy(including myself) have transplants that do have a long time to go so I never figured that all people would get is a few years extra.
For anyone interested about the portable dialysis system read about it here.