The Chronically Ill support Group

[JennyMominRI]

I just saw that Chris Penn died from undiagnosed Cardiomyopathy..I wasn't kidding about the risk of sudden death that I have

 

[luvwinnie]

Jenny, I read he also took "various medications" so maybe it was a combination of th emeds with the enlarged heart?

 

[Shugardrawers]

Is that the same thing John Ritter died from??

 

[JennyMominRI]

John Ritter had an aortic dissection

 

[luvwinnie]

John Ritter had an aortic dissection

Yep. Same as my mom.

 

[Shugardrawers]

I wish I could go like John Ritter did. Living, laughing, loving life, never knowing anything was wrong until BOOM! Game over. That way beats the long drawn out waiting.

 

[kat57]

"You don't know what you've got 'til it's gone!" After just turning 41, I was in a head on accident that resulted in a cervical disc fusion with left hip bone and pain became my constant companion from the accident on; at 49, I was diagnosed hypertensive; at 51, I had left foot reconstruction using right hip bone and becoming permanently disabled after a fall down a staircase:this means walking 50 steps and needing to rest, pain in left foot/leg if I walk over tow hours, and thus limited activity: good part: diability parking; at 55, diagnosed as hypothyroid; and at the end of my 56th year, diagnosed as diabetic, type II.
I am sorry that you ladies have chronic illnesses and thus are limited in your health.
My daily motto: It's better than the alternative. (death)

 

[MAKmom]

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

Your husband response was great. Some people freak out when they see wheelchairs.

 

[Obi-Wan Pinobi]

Guys, without going into a lot of detail, I need your good thoughts and prayers to help keep Lauri strong. Things took a turn for the worse yesterday at work and she just doesn't look good. She looks blank when I look at her and she can't stop crying. I'm scared she is defeated and won't be her normal strong self. She needs all the good thoughts you can send her way to get through this latest battle.

Thanks so much

 

[Claire L]

Gentle to everyone today. Not a very good day for me today - got about 4 hours sleep last night and I have to get a move on today - didn't get much done yesterday - it wasn't a good day for me.

I went thru the Lupron treatment about 10 yrs ago - didn't work for me and eventually I wound up with a hysterectomy - not sure if any progress has been made with this treatment but I have not heard of too many success stories.

The explanation for the initials I gave the other day -

RSDS = Reflex Sympathetic Dystrophy Syndrome also known as -
CRPS = Complex Regional Pain Syndrome

IBS = Irritable Bowel Syndrome

Sorry to hear you ahven't been feeling too good Mary, looks like I am now going down the route of IBS but trying to ignore it in a way, although I am now drinking decaffinated tea in the mornings and that is helping!!! Also had a couple of flares up in the past couple of weeks, luckily they have been fairly manageable, and having 13 days leave at the moment has helped alot.
Take care out there and hoping for some warmer weather soon to ease the aches and pains.

Claire

 

[Claire L]

OWP my thoughts are with Lauri and hoping she gets the legal support she needs to do battle with her inconsiderate employers on its way as well.

Claire

 

[Shugardrawers]

Guys, without going into a lot of detail, I need your good thoughts and prayers to help keep Lauri strong. Things took a turn for the worse yesterday at work and she just doesn't look good. She looks blank when I look at her and she can't stop crying. I'm scared she is defeated and won't be her normal strong self. She needs all the good thoughts you can send her way to get through this latest battle.

Thanks so much

Of course we don't need details, but if there is a possibility that if ML quit working you'd meet guidelines for medicaid she needs to DO IT NOW! It's too bad that SSD is such a long drawn out process since that would be another avenue. I know the only reason she stays at work is that insurance.

I also understand intimately the feelings she's having. You begin to wonder why you put yourself and your loved ones through all this. Especially when you know it's only going to keep getting worse. She'll come through this though. She's very lucky to have such a supportive Dh. Remember we are all here for you and you can PM me any old time.

 

[chell]

Lauri is getting my thoughts and prayers!

 

[Aimeedyan]

Can I share some good news? I figure if anyone gets why I'm excited y'all will!!!

I went in for my Remicade Monday and got my latest labs - for the first time in years my iron *and* my hemoglobin are NORMAL!!!!!!!!!!!!

I knew that I was feeling better, had more energy, and was being a lot more productive but I didn't know why. Now I know! This also means that my colon is healing well on the Remicade and absorbing nutrients again.

Most people don't get why I'm so excited about this but I knew many of you will understand that the little things help our daily struggle.

Thanks for letting me share!

 

[chell]

Yay for the great results! Glad you wanted to share with us.

 

[Tinks]

Hurray! I hope you only feel better each day!

 

[buckylarue]

First off, hi to all my fellow chronic 'manageable' illness (don'tcha just love that phrase ) people.

A person on another thread posted that they had to take antibiotics for 3 weeks and were getting so tired of taking medicine that they were feeling like giving up. I almost choked on my soda! What I wouldn't give to be able to take 3 weeks/months/years worth of medicines and actually be better, instead of the 17 years' worth of daily meds that I have been taking just to maintain something like a status quo! I had my regular follow-up with my Doctor this week, and had to update my list of meds before going in (since I can't remember them all)...I'm on 15 different meds every day, 16 in the summer when my allergy meds get added, 17 if my herpes flares up and I have to treat it! WAY too much of my time is spent filling my pillbox, taking pills, refilling prescriptions, making sure my insurance plans pay what they're supposed to on all of them, etc. etc. I could get so much more done in a day if I had all that time back!

OK, glad I got that off my chest; I feel better now. Hugs and pixie dust to anyone needing it today!

 

[Talking Hands]

Probably not the sickest but sure am hurting today. Fortunately I didn't get called to sub today so I am taking it easy. Have a big day tomorrow. Going to an all day deaf ministry workshop. Actually looking forward to it. Meanwhile I may go back to bed and take a nap later, do some crocheting and play on the computer

 

[Shugardrawers]

Sigh...another round of IV anti biotics for me today.

 

[luvwinnie]

Sigh...another round of IV anti biotics for me today.

Oh, I HATE IVs! I am so sorry to hear this.