The Chronically Ill support Group

[Tinks]

Happy Birthday, Shugardrawers! and many, many more!

 

[luvwinnie]

Winnie how you feeling today? You gonna be able to make your trip?

I normally would just neglect to mention this but I had to tell everyone that today is my 42nd birthday. Which is quite an accomplishment for someone who was not expecting to see Christmas, let alone another birthday!

YAY!! Have a WONDERFUL day!!!!

Dr. gave me Cipro...doing ok today. NO WAY are we NOT going!

 

[luvwinnie]

Yes, something with a valve is what I was thinking could be a possibility. How difficult was the surgery and the recuperating time for your Mom? Is she fine now?

Shugardrawers, Happy Birthday to you.

She had the surgery at age 62, in 1997. All went well. But in 2000 she had to go on dialysis. SHe passed away July 12, 2004. I miss her every single second.

 

[Rajah]

Happy birthday, Shuga!

I'm waiting on the bloodwork results.

 

[LBAK]

Happy, happy birthday Shuga! Enjoy your day.

 

[Rajah]

ARGH!!! Got my bloodwork results back and they're *still* clean. So we still don't know what's been wrong with me, except that at least part of the weakness and ache appears to have been from a bladder infection (weakness and muscle ache is the way it hits me most often). Got on the antibiotic for that and a week later the weakness is back down to the low level I deal with daily. I think that combined with the fact that I was approved for my job transfer (even though it won't happen until the 1st of April) which reduced a lot of stress are what's helped.

 

[Rajah]

Oh, and the wierd headaches are much better now -- I think they're tension related. But if they aren't gone 90%-completely after I get back from the UK (which will give me one month in the new office since I think the stress of this current job is seriously contributing to my health problems and give me 3 weeks of vacation) then I'll look into another doctor (neurologist maybe?) to make sure these headaches aren't anything else to worry about.

 

[Shugardrawers]

Rajah-how frustrating! Where do you go now? Did the doc recommend a firm course or just a wait and see attitude? I agree, seek thee a neuro!

 

[Rajah]

I went to the endocrinologist, who is very good. He did say the symptoms and family history are pointing very strongly toward lupus, and that stress and depression have made the symptoms worse, but until it shows up in the bloodwork there's nothing he can do but monitor. That, and give me the antibiotic for the UTI. He did ask me how that was doing, and since the antibiotic was helping, we're on a wait-and-see attitude.

 

[Shugardrawers]

Does anyone have any experience with TB? Saw my PCP today and he's concerned about an ongoing sore throat, fever and some other things. Why that connects to TB I have no idea. He asked me about a skin test and I told him I've tested positive with the skin test since high school but all my chest x-rays are normal. We just got back from having another chest x-ray. I don't quite get the connection between my symptoms and TB though. I figured the sore throat was from the mono??

 

[LBAK]

No experience with TB here but I hope it's the mono that's causing the sore throat. Feel better soon!

 

[Shugardrawers]

Did a bit of research. It's not the sore throat that I think he's concerned about. Seems some symptoms of an active infection are fatigue (DUH I have cancer) night sweats, weight loss, chills and fever. All of which I have and all of which can also be attributed to several other things besides TB. I feel a bit better now. I think TB must just be a jumping off place for him.

 

[paigevz]

DH has autoimmune hepatitis..........most likely inherited (THEY aren't sure if it has a genetic link, but since his mom and dad are both diagnosed with it, and it's not real common, I'm pretty sure it does).

I saw this thread when it was started, but it was coming up on his 6 month appointment when they sonogram, do more extensive bloodwork and he sees his specialist.........and that kind of always makes me very nervous and upset. I didn't know how well I"d do at posting right then.

Anyway, we went today, and the specialist is pleased. Says it's looking good. Says he seems to have regressed (good........opposite of disease PROgressed). He said he can continue his therapy for now as is. He takes Imuran and (I forget the other). He has taken up to 7 DIFFERENT prescrips, but now is only on these two (7 pills a day, but before it was like a dozen). He will call us with sonogram results.........that's to check for liver cancer. I will not fully relax until that call comes through okay. Then I'll get nervous again closer to his next appointment...........he does bloodwork every 3 months, but those just don't make me as nervous for some reason. He did say we could biopsy, and if his liver showed NO sign of cirrhosis or inflammation, he would consider stopping therapy, but only if it was perfect. When he was sicker, the biopsy showed some moderate cirrhosis, and he thinks it's likely to be much better, since his function is better, but isn't sure it'd be gone. He's decided to stick to therapy, as we don't want him getting that sick again.

It was so scary, getting to the diagnosis. He was very, very sick, and no one knew why. Finally, I took him to the emergency room and said we were NOT leaving until someone figured it out! They sent him to the liver specialist, and that's when we got the diagnosis. It was several months of him getting sicker and sicker, and we had a new baby at the time. The specialist said he'd only have lived about another month if he hadn't had treatment right away, and he wasn't sure at the time (just admitted today) that we'd get him back healthy again, even on therapy. He gave us 5-10 year lifespan. I had a 7 year old and a 4 month old at the time. The bottom dropped out of my world.

There's no cure, other than transplant, which can't be done unless he's dying, so it's like living with a hammer over our head. We've got rope checks every once in a while, and even though they say it's a good strong rope, the hammer is still there.

Now, he says as long as he responds this way to therapy, he can go one for "some time" and maybe come off meds. This is what they call remission.
So now I feel a bit like a ladder has been put under our hammer, so at least if it falls it may be a glancing blow.

He also said we COULD if we decided, have another baby with no worries about DNA problems due to the medicine. He says there is a bit more risk in getting a viable pregnancy, but that if the pregnancy progresses, the baby would be normal. We have not decided if we wish to do that. We were on the road to adoption before we decided to try fertility treatments and got our second son. We then had decided to still pursue adoption when our second son was a preschooler, before dh got sick. We were then told we would not be able to adopt with his diagnosis. Now, we think maybe someone would let us, if we had a note from his doctor as to the state of his illness. Then again, maybe not, and then it becomes do we want to get pregnant or not? The answer is yes and no at this moment, but I'm getting older and we do need to decide.

Anyway, that's my story, and where I'm coming from. I hope I can find someone here who "gets it". I have sympathetic friends and those who don't even try to get it, but I really don't have anyone who actually gets it.

Thanks for reading, if you made it through the novel I wrote!

 

[Mskanga]

After reading all these posts ( it took me a longgggggggg time ) I feel really fortunate because eventhough I feel like real crap somedays , you are far worse than me. I'm 42 years old but sometimes my body feels like 95.
I was diagnosed in my mid 20's with osteoarthritis and I have been fighting it since then. I also kept complaining to the doctor a couple of years ago about having heart palpitations and feeling dizzy sometimes, after all the tests I showed mild mitral valve prolapse but ever since they took me off vioxx the palpitations went away ( except for the ocassional episodes ). We have recently discovered that my arthritis has taken a nose dive and is now affecting my lower spine , not fun but I can live with that.
Did I say that I am going through peri-menopause and after doing all kinds os testing and everything coming back normal , the doctor can't figure out what the heck is going on with me and why my periods are so messed up? I am going for a D&C next month to explore my insides and rule things out or find out what the real problem is.
And get this.....my cholesterol went up but because I have too much good cholesterol , did you ever hear such a thing? I'm telling you that my body is just so confused that it doesn't know what to do , LOL.
But I won't give in easily , I continue to go skiing and do everything I want in spite of everything but with moderation , I listen to my body. Doctor says that is the best approach I can have. Oh and I forgot about the acid reflux , that wonderful heartburn that I have had for 15 years and makes me feel like I am having a heartattack when I have a flare up.
I take celebrex for the osteo , nexium for the acid reflux and birth control for my female problems ( but it's not working ).
People usually think I cannot feel that sick because I am always laughing and joking , if I didn't do it that way I would cry. My mom has alzheimers and just yesterday I was informed that we are in the process to find a nursing home for her , my dad cannot longer care for her they way she requires. It's hard because they are all in spain and I cannot help. My grandma also died from alzheimers , kind of makes me think this could be hereditary.
Off my soap now , and my hugs for all of you people out there who are facing way more serious diseases than I am , but thank you for starting a thread where we can just get things off our chest. :hugs:

Paigevz:
I fully understand where you are coming from because there's liver problems in my family too ( my dad and grandpa ) and my liver is something that they are watching close , both my dad and grandpa died from cirrhosis and I was told it was hereditary. Good luck to you and I hope the good news continue for you.

 

[phorsenuf]

I have a pain question. How do you all deal with it? I am in some kind of pain all the time, except it's getting worse.
Last night it was so bad I could barely sleep. The thought of even going into works just kills me. I know I don't have to go (we have a very good working relationship because of my health) but I also feel obligated to go.
So what's good to take that doesn't knock you out or make you loopy? I hate narcotics (always refuse them) and I also have a weird adversion to any new medication. I just hate taking it and alot of times new meds send me into panic attacks, so it's a tricky situation but one I need to get over LOL
Any suggestions?

Mskanga, sorry to hear of your problems, its hard to deal with chronic conditins and I am the same as you. I laugh, I joke, I always say I'm fine but on the inside I just want to scream! LOL
Sorry about your mom too.

 

[chell]

Cathy I wish I knew what to tell you could help with the pain but I have had to learn to just keep trying to go. Usually even the heavy stuff doesn't even take the edge off for me. I guess my body just doesn't process the stuff right. Hope you find some relief soon.

 

[Patty3]

I had my Thallium stress test on Saturday and I do not think it went well. I had started back to exercising and was using the treadmill everyday for an hour at 3.6 speed. I thought this test was going to be easy. About two to three minutes into the test, the speed was slightly increased and I felt good. I was not breathing hard or breaking a sweat. The doctor says, "Oh, I was not expecting this, are you having any chest pain"? No, I feel fine. He then proceeds to flip through my patient file looking for something. He then asks if I am having any chest pain again, I wasn't, but could feel that I was getting very anxious and starting to get a tightness in my chest. BP was 188/80, when the test began it was 150/90. This doctor told me that he was 90% sure that it was not my heart but a gastro problem on my initial visit. He stops the test and the thallium was injected. He closes up my patient file and I expected him to say something to me. He walks right by me and out the door without a word. I am very concerned. I have an appt with with him on April 5, but everytime the phone rings, I almost jump out of my skin. The echo I had the week before indicated that there was nothing significant to worry about. I would hope that if I need cardio cath, he would call me and not wait until my appt???

 

[Rajah]

Patty -- I think you're right. If you needed a cath, he'd call you I would think.

Cathy -- I wish I could remember the medication my mom takes. It starts with an R and it's for arthritis and similar conditions. It made such a difference in her life -- she went from being in bad pain almost all the time to it being very tolerable. That's the only thing I can think of, though, if normal pain killers aren't helping.

 

[Shugardrawers]

Remicade maybe????

 

[Rajah]

No, don't think so... She's not at home right now either so I can't ask her.