The Chronically Ill support Group

[eclectics]

I'm pretty low on the totem pole myself. I'm hypothyroid (going through issues with it right now) and I have fibromyalgia, which seemed to be in remission for a couple of years but it's back with a vengeance now. I have pain all the time and I'm so profoundly tired, I can barely function.

I also have Barrett's esophagus, which is a pre-cancerous condition of the esophagus, probably brought on by acid reflux disease. I have to take Prilosec or Nexium to control the acid, otherwise I'm in some pretty bad pain.

to everyone. I think it's great to have a forum to express ones self about the experiences of our particular conditions. Chronic means always and that's hard also on friends and family members who have to deal with us everyday. I suspect sometimes they get a bit tired of it also and any new venue for those who want to talk about their illness is a good thing, imo. Loved ones are great and they mean well but they just don't understand sometimes, and I can't blaim them.

I have to read up on your Barrett's. I never heard of it before. I can sympathize though because I am on Nexium also, plus Zantac. My other meds also calm down the acid but sometimes my stomach shuts down completely and the contents just backs up in my esophagus and sits there. Then I go into esophogus spasms and it feels like a watermelon going up and down your chest. Not fun. I get no warning so I never know when it's coming.

 

[pumba]

my oldest sister just told us a month ago that she has pancreatic cancer, into her gall bladder and also most of her bones.....she had lung cancer two years ago and they removed her lung......there is no treatment for her now.....she has pain and is taking some meds to cope.......she said she has six months at best.....we are a big family of YOURS, MINE, and OURS.....and we are all close. I think of wanting my son and his wife to have our new granddaughter, in 9 more weeks, and I am looking forward to our trip to Disney......now I say....I can't think of things going fast cause I see her time going fast.......been alot of emotions here......ITs been one month since she had all of us together to tell us this news.......I wished time would stay still ......but that does not happen......thanks for having this post cause it is good to say this and get it off my chest.......thanks and my prayers are with YOU ALL!!!

 

[eclectics]

my oldest sister just told us a month ago that she has pancreatic cancer, into her gall bladder and also most of her bones.....she had lung cancer two years ago and they removed her lung......there is no treatment for her now.....she has pain and is taking some meds to cope.......she said she has six months at best.....we are a big family of YOURS, MINE, and OURS.....and we are all close. I think of wanting my son and his wife to have our new granddaughter, in 9 more weeks, and I am looking forward to our trip to Disney......now I say....I can't think of things going fast cause I see her time going fast.......been alot of emotions here......ITs been one month since she had all of us together to tell us this news.......I wished time would stay still ......but that does not happen......thanks for having this post cause it is good to say this and get it off my chest.......thanks and my prayers are with YOU ALL!!!

So sorry. Prayers to you and your sister. I lost my sister to emphysema last year so I know what you are going through. It was very tough but I promise you will get through it. Hospices are wonderful places and they made her last days peaceful and pain free.

 

[JennyMominRI]

my oldest sister just told us a month ago that she has pancreatic cancer, into her gall bladder and also most of her bones.....she had lung cancer two years ago and they removed her lung......there is no treatment for her now.....she has pain and is taking some meds to cope.......she said she has six months at best.....we are a big family of YOURS, MINE, and OURS.....and we are all close. I think of wanting my son and his wife to have our new granddaughter, in 9 more weeks, and I am looking forward to our trip to Disney......now I say....I can't think of things going fast cause I see her time going fast.......been alot of emotions here......ITs been one month since she had all of us together to tell us this news.......I wished time would stay still ......but that does not happen......thanks for having this post cause it is good to say this and get it off my chest.......thanks and my prayers are with YOU ALL!!!

Oh Pumba. I'm so sorry. It must be so hard on all of you.I can't even imagine.

 

[luvwinnie]

Pumba, I am so so sorry.

 

[luvwinnie]

May I ask how many of you work and if so, full-time or part-time? Thanks to my meds I'm able to work full-time.

 

[JennyMominRI]

I don't work.. My HIV is considered a service-connected disability.I am Rated 100% permantely and Totally Disabled by the VA and SSD

 

[Shugardrawers]

Pumba it's so hard not only for the patient but for the family as well. I hope she's able to hold on long enough to see your new grandchild. We're here for support whenever you need.

Someone asked if any of us work. I stopped working full time when I was diagnosed this time around. After several months I decided I needed a little something to do and now I work about 10 hours per week merchandising cards. I have 2 co-workers who are very understanding so calling in sick is never a problem. The boss knew what she was getting into when she hired me. She's been great. I get a TON of help from DSis who is one of my co-workers and my direct supervisor has arranged things so that I am not in on the majority of heavy physical labor and when I am there is someone always with me. The only reason I stay with it is because it would be so hard to find anyone else willing to work around everything. I also need the time away from home and all my troubles. Oh, and all my paycheck goes into the Dis fund so there's that too

 

[AMcaptured]

Another disboarder with chronic illnesses.....I started out with RSD in my right arm following surgery for "simple" carpal tunnel release but things didn't go well and I was left without any feeling in my arm from the bicep down yet constant burning and stabbing pain, figure that one out, right. I am on neurontin for that.

Anyway, after almost 7 years of dealing with constant pain that keeps me awake at night, has disturbed my cycle, caused weight gain from my meds, etc. I was recently diagnosed with Barrett's esophagus. I have very bad reflux and esophagal spasms that don't seem to every stop no matter how much protonix I am prescribed.

I have had bad endometrosis for most of my life and am in the middle of perimenopause right now and the combination of factors, heavy periods which come appx every 21 days and stay for a week minimum , constant burning and stabbing pain in my arm, hot flashes, chest pain ( from the esophagal spasms), plus the inability to sleep long enough has completely whipped me out emotionally and physically.

I thank God daily for my wonderful husband and daughter because without them I would have given up by now.

I feel compassion for all of you, I refuse to feel sorry though because I won't allow anyone to feel sorrow for me. When people tell me they feel sorry for me, I say Please don't, what I want you to send my way is well wishes and good thoughts.

So to all of you, my well wishes and I send you good thoughts for a better and brighter tomorrow.

 

[JennyMominRI]

seem to every stop no matter how much protonix I am prescribed.


I feel compassion for all of you, I refuse to feel sorry though because I won't allow anyone to feel sorrow for me. When people tell me they feel sorry for me, I say Please don't, what I want you to send my way is well wishes and good thoughts.

So to all of you, my well wishes and I send you good thoughts for a better and brighter tomorrow.

Pity sucks doesn't it? I hate pity

 

[mickeyfan2]

I take medicine everyday and do work full time. I am told I could go on disability, but I am not disable, unless that means I cannot run a marathon.

 

[BamaGirl]

I was disgnosed with Crohn's Disease in 1995. Now at the end of the month I am undergoing liproscopic surgery for possible endometrosis. I am not at all happy about the possibilty of adding another chronic condition especially one that can aggrivate the Crohn's. The Crohn's Disease already gives me kidney stones(due to surgery to remove a highly affected area). That's my very condensed version of my story. Thanks for letting me share!

 

[Shugardrawers]

Is it just me or does anyone else get this--Someone looks directly at your spouse or other family member and asks how you are doing when you are standing right there?? As we left the bowling alley a couple of weeks ago a man I'd been sitting next to for the past 3 hours stopped my DSis to ask how I was and have quite a lengthy conversation about me! I'm sick, not deaf or mute. I'm not going to freak out if you ask politely how I am today. It's ok, you can bring it up, I'm well aware I have cancer. If I'm in my wheelchair that particular day it's even worse. The server in a restaurant once asked my Dh what I would be having. Without even looking up from his menu he said "A hissy fit if you don't ask her directly." I knew I loved him for a reason

 

[JennyMominRI]

Is it just me or does anyone else get this--Someone looks directly at your spouse or other family member and asks how you are doing when you are standing right there?? As we left the bowling alley a couple of weeks ago a man I'd been sitting next to for the past 3 hours stopped my DSis to ask how I was and have quite a lengthy conversation about me! I'm sick, not deaf or mute. I'm not going to freak out if you ask politely how I am today. It's ok, you can bring it up, I'm well aware I have cancer. If I'm in my wheelchair that particular day it's even worse. The server in a restaurant once asked my Dh what I would be having. Without even looking up from his menu he said "A hissy fit if you don't ask her directly." I knew I loved him for a reason

I think a lot of people are just afraid.They don't know what to say or how to say it.They don't know if you are Ok talking about it,or if you wuld rather not talk about it at all. I feel bad for people sometimes. ON the other hand <i often feel like I have to be *on*..I'm afraid that if I cough people think i'm going to keel over..And they do to,I see them looking at me,studying me to see if I'm OK..I feel like a speciman under a microscope. I'd rather they ust ask

 

[luvwinnie]

Is it just me or does anyone else get this--Someone looks directly at your spouse or other family member and asks how you are doing when you are standing right there?? As we left the bowling alley a couple of weeks ago a man I'd been sitting next to for the past 3 hours stopped my DSis to ask how I was and have quite a lengthy conversation about me! I'm sick, not deaf or mute. I'm not going to freak out if you ask politely how I am today. It's ok, you can bring it up, I'm well aware I have cancer. If I'm in my wheelchair that particular day it's even worse. The server in a restaurant once asked my Dh what I would be having. Without even looking up from his menu he said "A hissy fit if you don't ask her directly." I knew I loved him for a reason

I love your DH's answer!

 

[eclectics]

I love your DH's answer!

Me too. The perfect comeback!

 

[chell]

I don't know why this didn't come up on my search! Ya'll can ignore that other thread I started.

I have peritoneal cancer stage III. It has a mortality rate of over 90% within the first year but with a new chemo combo and testing a new drug I'm hanging in there and doing suprisingly well all things considered. But boy, I'm sick and tired of being sick and tired!!

My mom has fibromyalgia but she seems as woefully uninformed as I am. What is it exactly and what causes it?

Sorry but I must have missed your thread. So sorry to hear that you have cancer. Have faith that the new chemo combo and new drug will heal you.

I don't think they really know what causes fibro at this point. There are lots of maybes out there. All I can say is that it sucks big time! I'm one of the ones who has pretty much had it since birth so I've dealt with this pain.

DisneyMim your Lupus test was completely clear? Mine is high but one level below where they consider you to have it. Odd. But hey my body has always been odd. At first they thought me having arthritis may have made the Lupus test act different but now they have decided otherwise. Who knows with all of this.

Later today I will try to finish reading this thread. I've got to run out now real quick.

Again, to everyone here!

 

[oybolshoi]

Pumba,

best wishes to you and your family during what I know must be a terribly difficult time. I lost my only sibling to lung cancer about five years ago (he was 37 and I was 31). He was diagnosed in June and gone by February of the following year.

It may sound cliche, but you really do have to rely on that family unit to help hold things together. We all just tried very hard to focus on what he wanted and how to make him as comfortable as possible. His quality of life was actually pretty good until the last four weeks or so of his illness, and that is what we tried hardest to do for him (and I suppose for us, too).

My heart goes out to you - it is never an easy thing to watch someone you love die.

I hate cancer.

my oldest sister just told us a month ago that she has pancreatic cancer, into her gall bladder and also most of her bones.....she had lung cancer two years ago and they removed her lung......there is no treatment for her now.....she has pain and is taking some meds to cope.......she said she has six months at best.....we are a big family of YOURS, MINE, and OURS.....and we are all close. I think of wanting my son and his wife to have our new granddaughter, in 9 more weeks, and I am looking forward to our trip to Disney......now I say....I can't think of things going fast cause I see her time going fast.......been alot of emotions here......ITs been one month since she had all of us together to tell us this news.......I wished time would stay still ......but that does not happen......thanks for having this post cause it is good to say this and get it off my chest.......thanks and my prayers are with YOU ALL!!!

 

[Christine]

I am the "healthiest" sick person you'll ever meet!

I don't have any severe chronic illness but I feel chronically ill. Does that make sense.

When I was 30, I was diagnosed and treated for thyroid cancer. That is an ongoing thing that will be monitored for a lifetime. I struggle all the time with keeping my thyroid hormone in the right range.

I have had three breast biopsies in the past 2 years (had two previous biopsies in my 20s). All benign, but all very scary. And they were actually open biopsy--not the quick kind in the office, so the healing part of it has been rough.

Then I have acid reflux and IBS that came after a bout of giardia (which occurred long-term as a result of my thyroid cancer treatment).

Basically, I haven't felt "well" since my mid-30s. Yet, every doctor tells me how healthy I am. Nothing ever shows up. It all gets very depressing.

 

[oybolshoi]

I work full time - I've actullay been at home the last two weeks recovering from laparoscopy and a few other oscopies that they threw in as well. I'm itching to get back to work (Monday!).

My Crohns medication keeps things pretty well under control but I usually end up missing at least a day or two through the year due to minor flare ups. I was completely upfront with my manager when he hired me (he got waaay more information than he ever needed or wanted!) so he's pretty understanding. Of course, I usually put in about 50 hours a week so he has nothing to complain about.

I've got painkillers for the Endo...don't usually take them at work because they muddle my brain and my job is fairly analytical and detail oriented...I also act as the assistant department manager and repsonsible for supervising three associates so I gobble Advil during the day if it's bad and then pop something stronger when I get home. I'm hopeful that once I start my new endo treatment plan next week the discomfort will be lessened considerably.

And, whoever posted earlier about having a sense of humor about the whole thing was on the money! I joke about the Crohns all the time (otherwise it would just gross me out!).

B.

May I ask how many of you work and if so, full-time or part-time? Thanks to my meds I'm able to work full-time.