The Chronically Ill support Group

[oybolshoi]

So sorry to hear about the pregnancy mix up - that's just inexcusable.

I know what you mean about the healthy food issue - I have to be very careful about things like fruit and vegetables - pardon the expression but it's a crapshoot every time I try to eat them.

And yet I can eat a cheeseburger or slam down a martini and not have any problems at all. My medication does a pretty good job of keeping things in control but even with it there is still that cloud of uncertainty when I sit down at a meal and think, "Am I going to regret eating this vegetable mix?"

It certainly makes life interesting.

Very annoying condition to live with-the problem is that you just never know when it will hit. Salad has put me in the hospital twice--it won't happen again. My problem is that the "healthy" things I should eat for overall health are the things that flare the Crohn's up.

My wife has not tried any treatments other than the yearly clean out and hope surgeries. She called yesterday half in shock as she was at the doctor and her pregnancy test turned out positive-they even sent her to the hospital for blood tests to confirm. The doc called a half hour later and the office had mixed up her test with someone else's-she is not pregnant. What a cruel mistake for someone who has been trying for 6 years for another child.

 

[oybolshoi]

Thank you for sharing that - it sounds terrible. And the psuedo-menopause issue is one of my primary concerns, especially with the potential for bone density loss. I think I'm just going to stick with my current plan for now and wait and see.

BTW - is there any information on the net about the grassroots group you mentioned? I'd like to read about it if it's available to the public.

I'll share it here so that anyone considering Lupron will see it. Of course, not everyone has the same effects, but mine were:
HORRIBLE HORRENDOUS hot flashes (remember LUpron puts you into pseudo-menopause
VERY VERY dry eyes, I"d wake up feeling like someone rubbed them with sandpaper
MOOD SWINGS that I didn't even know existed. I've always been a very happy, laid back person. These mood swings made me feel HOMICIDAL. I'd be filled with RAGE for no reason. Even my own mom said I was a *itch on that drug!!
Short-term memory loss
Severe fatigue
I LOST weight also and I was already very thin

 

[luvwinnie]

http://journals.aol.com/thesongstressss/DowntheEndometriosisRoad/entries/154

Here is a link to one woman's story, but the grassroots org.'s Website doesn't seem to be up anymore. I'll see what else I can find.

 

[oybolshoi]

Don't mean to be a thread hog, but are you still there Luvwinnie?

I was wondering if your side-effects were through the entire course of treatment and how long after you came off Lupron did they continue? Did you do the 3-month or 6-month dose?

Thanks again.

B.

 

[Shugardrawers]

I was on Lupron about 15 years ago for severe endometriosis. I felt all the things you guys are describing and had no idea it was the meds!! I thought my condition was just deteriorating rapidly and finally begged my GYN for a hysterctomy at the age of 30 If I had known then what I know now, I may have had a little Shuggie after all

 

[oybolshoi]

One of the things that frightens me the most is that my doctor told me that after a 6-month course of Lupron a lot of women who couldn't get pregnant will find that they suddenly are able to do so within something like an 8 to 12 month window.

I've never been able to get pregnant and while this possibilty is like a light at the end of the tunnel I don't want to find myself in worse shape a year or two down the road. And I would be even more devastated to actually have a baby only to find out that there could be potential long-term health issues for the baby that are related to this drug.

Scary stuff.

 

[luvwinnie]

Don't mean to be a thread hog, but are you still there Luvwinnie?

I was wondering if your side-effects were through the entire course of treatment and how long after you came off Lupron did they continue? Did you do the 3-month or 6-month dose?

Thanks again.

B.

I was on 4 mths I believe. Yes, side effects were there the entire time. I then had surgery.

 

[luvwinnie]

I was on Lupron about 15 years ago for severe endometriosis. I felt all the things you guys are describing and had no idea it was the meds!! I thought my condition was just deteriorating rapidly and finally begged my GYN for a hysterctomy at the age of 30 If I had known then what I know now, I may have had a little Shuggie after all

WHAT? No one told you it was the drug? THat is HORRIBLE. I am so sorry.

 

[luvwinnie]

One of the things that frightens me the most is that my doctor told me that after a 6-month course of Lupron a lot of women who couldn't get pregnant will find that they suddenly are able to do so within something like an 8 to 12 month window.

I've never been able to get pregnant and while this possibilty is like a light at the end of the tunnel I don't want to find myself in worse shape a year or two down the road. And I would be even more devastated to actually have a baby only to find out that there could be potential long-term health issues for the baby that are related to this drug.

Scary stuff.

I am sorry I can't help you in that area. I've never tried to get pg.

 

[LBAK]

to all of you suffering from endometriosis. I know what a hard disease that is.

Unfortunately this is one thread I can also join. I was diagnosed with rheumatoid arthritis and Sjogrens Syndrome 11 years ago and recently diagnosed with fibromyalgia and degenerative disc disease due to the RA. I am in pain everyday but I still work as a pre-school teacher. It's what keeps me going! I love the kids. My DH has learned to pick up a lot of the slack around here as I can't do as much around the house. He's a doll and doesn't complain. I take over 18 pills a day but it is so worth it for me as I wouldn't be walking if I didn't take them. Some days are tough but most of them are great.

to all of you. Have a feel great day!

 

[chris1gill]

My elderly mother even forgets.She will call and and give me this lng laundry lists of things wrong with her(none serious).One time she atually said "You have no idea what it's like to worry about your health all the time" And a second later there was dead silence when she realized what she said.

OMG I'm sorry I laughed at this, but thinking about this just made me laugh!

To Susan514, have you been checked for swallowing problems or reflux? I developed swallowing problems (which I didn't even know) which lead to terrible reflux (which I didn't know either) & that lead to TERRIBLE breathing problems that nobody figured out for more than a year...

Anyhow, Marseye, I know how you feel.... my disease used to be invisible & I remember back then I just wanted someone, anyone to acknowledge that I was in pain... My DH who is the type that wants to fix everything was in complete denial until I had a diagnosis... then he took it like a ton of bricks, but I had already been sick for SEVEN YEARS.... I was just glad to know what to call it... I have adult onset mitochondrial myopathy... more info can be found at www.umdf.org

For the most part life is tough, I'm homebound without DH when he is at work, but I have a good support system & my medical care has been good since diagnosis five years ago....

I still love to travel & I'm glad that DH helps me to do that....

 

[scubamouse]

I have Hashimotos thyroiditis (autoimmune hypo), and I think I'm the first here with 'premature ovarian failure' (POF) also autoimmune related. A lot of the time I don't think I'm sick or feel like I'm sick but then I realized I'll be on medicine the rest of my life and that just sounds so odd.

my sisters and I all have a mix of endocrine/autoimmune disorders and when I told my parents about my POF, my mom's response was 'I just don't know where you girls all get these diseases, there's nothing like that on MY side of the family' Way to make my medical problems about you mom

 

[JennyMominRI]

OMG I'm sorry I laughed at this, but thinking about this just made me laugh!

....

LOL,Like I said,never worry about laughing at e or with me..I think it's pretty funny myself.. My poor mother must have been mortified when she realized what she said.

 

[chris1gill]

My poor mother must have been mortified when she realized what she said.

OMG, I can JUST imagine, that's why I was laughing so hard.... I mean the irony is so funny KWIM? I'm lucky, my MIL is not well herself, so she can now commiserate with me, although when this illness was invisible, that wasn't true... even she wondered if I was a complete hypochondriac (sp?), It wasn't until the smooth muscles started failing that everyone sat up and took notice! Why is that I ask?? It's easier to accept what you can see and quantify I guess... but that doesn't make it easier for those you cannot see or quantify....

 

[iluvdisney]

I am living with RSDS as a result from a broken wrist when I was trying to learn how to rollerblade a few years ago. After many months of intense physical therapy, I was finally told that I have RSDS and my condition is "as good as it gets". What a nice thing to hear a Dr say!!! The pain is not a lot of fun to live with and all the meds they had me try to help control the pain sent my IBS into a tailspin. So I am trying my best to deal with the situation. And since my family doesn't seem to want to undersand anything about RSDS, I do what I can to make it thru some of the "bad" days.
To top it off the year before the RSDS set in, I was diagnosed with Rheumatoid Arthritis which is not fun either. I thought if I kept active I would put off some of the problems of the arthritis but it's not easy living in the "weather conditions" that can make me "a not so happy person".

 

[Shugardrawers]

Hey, do me a favor guys. When you refer to your particular disease the first couple of times would you spell out what it is rather than using abbreviations? I'd like to be able to search for info and support resources but can't if I don't know what the abbreviation means. Thanks! Hope everyone is doing well tonight. I started the day feeling decently and tried to do a little housekeeping but it went downhill quickly and now I'm wiped. At least I got 2 loads of laundry and the dishes done and the living room picked up though not vacuumed. Maybe another day. and and to all

 

[kwdietrich1]

Wow.. this thread brings tears to my eyes. I think it is theraputic to have a place to discuss the pain and struggle one has had with their illnesses. My heart goes out to everyone. You are all very strong individuals. Sorry this will be long.

When I was 24 I was diagnosed with uncontrollable high blood pressure. Due to some incompetent doctors, my kidney failure went undetected even with bloodwork. I was diagnosed with fibromyalgia (not knowing that it is autoimmune disease and often a precursor to many other autoimmune diseases according to my nephrologist). Within 1 year of my fibro diagnosis I was in kidney failure at 20% function. After a kidney biopsy (ouch, you have to be awake for these!) I was diagnosed with IgA nephropathy. Antibodies were attacking the tissue of my kidneys. For 7 months I did a kind of chemo to kill the antibodies. Since my doctor didn't want to do another biopsy since further damage could result, he had to assume the antibodies were killed because my renal failure slowed down for a few months. In the end I was lucky. I only had to do dialysis for 9 months. But I remember all the vomiting and terrible headaches along the way thinking it was just a bad migraine.

I think it's horrible when people don't realize that their are invisible illnesses. Except for looking tired, many of my colleagues made rude comments to me about taking a lot of sick days. I continued to work full time while on dialysis. I would get home at 4pm and hook myself up to the dialysis machine and disconnected in the morning before work. I lived in my bed except for work. I am very grateful for my transplant. It will be 5 years this summer. The only thing I don't like as a result of the transplant is the frequent infections that wind up with me being in hospital. I think I was already starting to take for granted my new freedom and health. I really evaluated that and live day to day, and most days are good. I am hopeful for the 10 years of life of the kidney my WONDERFUL DH donated to me, or heck, let's go for the 20 year mark! I sure don't think I could go through it again and work. I'm still young and want to have the best of both worlds.

to everyone!

 

[Shugardrawers]

kwdietrich OMG that puppy is ADORABLE!!! Welcome

 

[Zoiebear]

I have chronic illness, i have blood disorder where I am prone ot blood clots, I am on blood thinner for the rest of my life. I also have a chronic back condition. It is ironic about people sick of beign sick. I know how that is, I go thru it alot with my blood problems, this year alone I have been in the hospital for a week already. ................. But I will tell you my best medicine is my beagle sulley. I had been a care taker for the last 15 years, so like from the time I was 15 til 30, then I lost my family and have been alone for the last two years. And my two beagles, sulley and zoie are the ones who have gotten me thru the pain and stresses of continually being sick
Stacie

 

[chell]

Stacie pets have made a wonderful change in my life as well. The next few months I will have to live without my fur babies and I can't stand to even think of it.