Chronic/Terminal Illness Thread

[BradTheMad]

@ DragonflyFae & TxCat; hoe you will both feel better soon.

I'm battling some infections right now but my stupid immune system isn't fighting the infections oh no it's trying to kill off some healthy cells...still feeling better than last week. Last week was hell over here and I also get stir-crazy. Yes I love reading but not 24/7!
It's also hard to concentrate with the constant ringing in my ears which is getting worse and worse and I pray to G-d it will stop soon so I can at least try and adjust to my new and not so improved hearing. Using white noise at the moment which helps a little.

@ Niverdia lack of importance? When you have to deal with your health I wouldn't call it unimportant.

Hopefully everybody will have great days ahead

[shadowrose45]

removed

[GrowlingCupcake]

I have a few, most of them relatively mild right now though I fear they'll get worse as I age.

I have polycystic ovarian disorder which generally isn't a big deal apart from the fact that it's given me insulin resistance which will soon turn into diabetes. I take medication for it and I'm attempting to lose weight and be healthier to put it off but I will end up getting it soon. Obviously, any other issues with having high blood sugar levels come into play... It's rather worrying for me but right now it's not too bad. The only other issue I have are things linked to self-image (makes it harder to lose weight, I have more body hair than I should, growing up was a bitch when you're a giant compared to most people, etc.).

I also slipped a disc when I was fourteen or so which has given me issues with my back on and off. Sometimes I can pinpoint what set it off, other times I can't. When it happens, anything apart from lying down is horribly painful. I'm thinking of getting a cane so it's easier for me to do things like moving around when it hurts that badly. And, in addition, I've now developed sciatica... Right when winter is setting in too The cold makes my leg hurt so bad I want to chop it off. It now takes me about 30 minutes to walk to a location when before it was less than 10.

In addition, I also have migraines and photophobia. I more or less always have a headache. It just never goes away. My migraines are atypical so it was only about a year ago that I found out my "light headaches" (they were almost always caused by light) were actually migraines. Got scanned, found nothing wrong with my brain (yay) and since hiding in the dark and taking OTC painkillers was working, it's what I do when I get bad headaches. I usually just ignore the ones I always have since I've grown so used to them. My photophobia, though, is a bitch. It's difficult for me to watch movies because my eyes hurt so much I have to close them for a minute or more every time scenes change from dark to light. It's never really been looked into but I'm speculating (wildly) that maybe I have difficulty contracting my pupils.

Apart from that, I have carpal tunnel syndrome but that flares up only occasionally and anaemia that doesn't want to go away.

I'd say my psychological problems are possibly more damaging... I've been to several therapists and no one diagnosis was given... but everything leans towards anxiety, paranoia, and depression. I am not on any medications for it though my current therapist is thinking he may want to put me on some. I have bad experiences with them (they make me sleep and suck any remaining enjoyment out of my life) so I'm going to try to convince him otherwise. Right now, I'm worried that I won't be able to overcome it enough to get my degree but... I dunno, I just have a feeling things are going to be okay this time around (this is the third time I'm going to university).

[flamekaat]

SHARING THE BAD NEWS:
Yeah sitting in the hospital right now on my cousins lappy top typing away and wondering when my grandmother who raised me will pass on to the next life. Diagnosed terminal with liver cancer in august, brought into emergency the day before yesterday and told it has spread to her spine, she supposedly will be gone in just a few days. This morning she came back to sense long enough to tell myself and my other cousin she loves us. I had to come back to the family hang out corner of the room and cry. Ghah! can sometimes bear it then it hits me like a hammer to the gut being wielded by Thor. Hurty hurty. Also been net free for a few weeks because of residence transition. A few more most like. So in need of love and well wishes for the family and prayers for grandmas swift and painless passing. Thanks everyone.

[TxCat]

flamekat: I'm sorry for your situation and I hope that your grandmother passes easily, without much pain and suffering. It's different for each person, I guess. My grandfather died of a rare form of kidney cancer which had spread to the spine and liver. They didn't want him dying in a hospital so he was in my grandmother's living room in a hospital bed...and he screamed constantly for the last few hours of his life.

I wouldn't wish that on anyone. Don't expect to adjust immediately; my grandfather has been gone for years and every so often I still get that hammer to the gut when I realize I wanted to tell him something and I can't, not in person.

For me, it's a waiting game. Waiting on the test results to come back and I'm worried that something went wrong because it usually only takes a week to get results back. I'm stuck with Gatorade, mushy things like canned noodles or ramen, and some proteins (I can handle processed meat but not a good burger or chicken). It hurts to eat, like I've been doing sit-ups all day long. I don't feel good after doing so either. And of course, nothing stays where it belongs.

I want them to fix this or at least tell me what's gone wrong. I'm tired of guessing, adjusting this or that supplement, and hoping for improvement. I'm tired of sleeping my days away because I can't do anything else. I have a simple wish: I'd like to eat just one normal meal --- no mushy stuff --- and not have it come back on me in any way.

[BradTheMad]

@ flamekaat; so sorry to hear. I will certainly keep your grandmother in my prayers. It's never easy to lose anyone let alone because of a terrible disease. BDE

@ TXCat; I really hope you will be able to eat regular food again soon. I cannot imagine what it must be like. I can imagine the not-knowing, it's so frustrating when they don't know what exactly is going on.

I finally defeated my infections only to be left stuck with Eustachian tube dysfunction which is...permanent hooray. No wonder the high-pitched squealing in my ears has gotten worse. Another thing I have to learn to live with but if the Paget's gets worse I might be deaf in a few years anyway.
If it finally goes silent I wouldn't mind that much(finally rest but G-d I'd miss my music)but there's a good chance I won't hear outside sound but still am stuck with all the creaking, drumming and squealing. I seriously don't know if I'm mentally strong enough to deal with that on top of everything else.
I'm really getting depressed about this, I can handle all the other stuff but this is just the last drop for me. Pretty stupid but TES: Skyrim comes out this week and I plan to completely lose myself in that game. There's also strong support from my religious community but it only goes so far. It's just that with every new thing that comes along you have to refocus and that's so damn hard. I guess I am also not the only one wondering; what's next?!

[TxCat]

I've been existing on rice and coconut water flavored with fruit juices. Not the best diet in the world but the coconut water staves off dehydration and gives some mineral nutrients and the rice usually doesn't offend the system.

@Brad - Even deaf, you can still enjoy music. The middle to lower range of my hearing is gone because of the meningitis and several blows to the head. I crank up the bass so that I can FEEL the music still. It works well enough, though if you have anyone living with you they might get annoyed. I don't know what to tell you about the tinitus (sp?). Mine is intermittent but I don't know what I'd do if I had to live with it constantly. Usually I go to sleep and stay that way; otherwise I end up literally banging my head on something in frustration in an effort to disrupt the noise somehow.

[BradTheMad]

I crank up the bass so that I can FEEL the music still. It works well enough, though if you have anyone living with you they might get annoyed.

I could do that but I also suffer from hyperacusis(loud noises physically hurt) and loud bass would kill me. I was always a fan of what my parents used to call doof-doof music but I can't stand it now. I expect the hyperacusis to get less and less though as my hearing is slowly fading anyway.
I still enjoy my music but on what some would consider a whisper-volume. My concert days are over but at weddings and such I just use earplugs to protect myself so I can still dance to the Klezmer played there.

I'm not really scared to go deaf(though very depressed about it) but afraid the tinnitus will stay audible to me. I try and protect my hearing however I can so I can enjoy it as long as possible.
Deafness is a major problem within my religion as almost everything is based on listening. There are some mitsvot or commandments that you need to hear the shofar sound or a particular text. Well what if you are deaf?! I'm not the only one though as we Askhenaz have a very high number of deaf people in our ranks due to genetics. Lucky for me the battle has already been fought a decade ago by others.
I'm already learning sign language in a specialized group just in case. I have no idea how fast this will progress or even if I will go completely deaf due to the Paget's. Paget's cannot really be treated but the symptoms can be fought if you keep a very close watch. It goes fast for months and then suddenly seems to completely stop for a long time. I'm still doubting, together with my physicians, whether it's truly Paget's or some unknown new crazy syndrome or a side-effect of my also unknown immune-disorder.

Not knowing is really the hardest part to accept.

Oh and I do bang my head in frustration at times, against a pillow obviously, no sense in fracturing my skull too. It can really drive you up the wall at times but there are days it's "not there".


Also, good you are taking care of yourself but I really hope you can enjoy some actual food again soon.

[flamekaat]

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.
She went very rapidly when the time came because her liver cancer had gone into her spine. She was nicely medicaited at a good hospital with very caring staff. I would reccomend IMC on cottonwood st in the salt lake city area to anybody for just about anything. Now we have had births and deaths (and my finding out bedbugs like me as a nom ) And all has been carefully handled as it should be. Thanks folks at Intermountain Medical Center!

[TxCat]

flamekaat: I am sorry for your loss but no,I don't think that the sense of relief is abnormal especially when the loved one has a long terminal illness which causes pain and suffering. I felt only relief when my grandfather passed on because he'd lost so much of himself and dying hurt so much.

We're looking at end-care options and I'm trying to get my living will together and to at least organize how I want my things distributed in case the worst happens. I don't think I want to die in my home simply because it would be so terribly hard for them to get the body out of here. I remembered to specify that there would be no autopsy (against religious protocols) and the conditions under which I DO wish resuscitation and treatment. We are hoping, if I am still coherent enough to make a choice, to travel to the one state in the US which allows assisted suicide so I can go comfortably. Florida, if anyone remembers the Terry Schiavo fiasco, has made it practically impossibly for anyone terminally ill to get their dying wishes fulfilled. I don't want to linger like that and I don't want the Florida government making that decision for me.

I'm also not certain they would let my family have the ashes, part of which are to be made into beads and gemstones so that they have a remembrance of me. The remainder will be scattered on the farmstead, over the Colorado Rockies from which I came, and on what was once the Osage land.