The Chronically Ill support Group

My MS doctor has me take 1 prednisone a week, 1 hour before I get my injection. It helps with the side effects of the med. I don't like the thought of taking a steriod long term, but the difference in how I feel... WOW!

My SIL's father has lupus. He had chemo as his treatment. This January he was telling me he is so afraid of needles, he would rather go through chemo than get an IM injection. I am not so sure about that. ;)
 
Those of you with brain fog, is it caused by your condition or by your meds? I was on a med that made me horribly forgetful, so much so that I'd go to the grocery only to come out not knowing how to get home. I've since stopped that med and am much better but still forgetful. I think that's just my body hitting the end of it's rope with all this though.

The mono sucks and apparently there's not much they can do about it. Anti biotics don't do anything and it's just advil and sore throat lozenges for the next several weeks. Especially in my case, doc is reluctant to prescribe any more than the entire pharmacy I'm already taking.
 
I havent scrolled ahead to see if anyone else suffers from NF (nuerofibromatosis).
It doesnt cause me any pain, but I hae small tumors all over my body that are very unsightly.
In my family it was geneticaly passed.
I passed it to my son and he's had major issues.
He has had 2 brain tumors, a blood vessel that bled into his brain, 2 mini strokes and a seizure disorder.
Hes 23 and a survivor.
He works full time and owns his own car.
He is an inspiration.
He says his life is great and better than the alternative of taking a dirt nap
 
Im replying to my own post.
Poor DS has short term memory loss and is extremley weak on his right side from the blood vessel.
hes going through PT right now to try to stand on his right leg for longr than 2 seconds.
He might have to have a brace.
While my NF doesnt cause any physical pain, mentally Im a basket case.
I absolutely LOATH looking at myself or having my picture taken.
I know it sounds petty, but I cant help it.
The tumors are all over my face.
 

arminnie said:
I hope you are doing better. Also - it could be gall bladder. I went to the ER FOUR different times (twice by ambulance) thinking it was heart problems or esophogeal spasm. It took my hairdresser to diagnose it as a gall bladder problem.

Once I finally got a sonogram, the doctors who at been at a total loss as to what was wrong with me (and told me that I was imagining this) officially diagnosed the gall bladder problems, and I had it out.

It is so easy to diagnose with a sonogram, but you cannot believe how many stories I've heard about it being misdiagnosed.

Thanks for asking. I went to the Cardiologist yesterday and he scheduled me for a nuclear stress test and an echocardiogram. I spoke to the Gastro doctor and he did ask if I still had my gall bladder, I do. He gave me a script for Nuluv and he said that it would help with any spasms. I take one as soon as the spasm starts. The Cardio doctor does think that it is a gastro problem, but he scheduled the tests to be 100% sure that it is not my heart. I see the gastro doctor after I receive the heart results.

What did the pain from the gall bladder feel like, was it a punch or sharp pains?

As I have mentioned before, I take about 13 pills daily. My internist, gastro and allergy doctor all know the meds I take. But, it was the cardio doctor who found something he did not like. I have been taking Norvasc for about 10 years. This doctor said that this medicine could be linked to my gastro problem and he took me off it immediately.
 
*hugs* to everyone who's been having trouble and having to deal with these chronic problems. Right now, I think my most serious "chronic illness" is dealing with the friends who don't understand and are just tired of me not "getting better". :rolleyes: Who are convinced it's all psychological and if I'd stop thinking about it I'd get better. :rolleyes: Sometimes, I want to strangle them. :furious:

I've got asthma that is fairly well controlled, but I do avoid situations that would put me into an attack if I can. Their attitude has become lately that I'm avoiding them because I don't want to come to their house for the evening because of my asthma. :(

I have acid reflux, so have to be careful about what I eat or it sets off heartburn.

I also have a lot of allergies, especially with foods, so have to be careful about what I eat that way. Luckily, only three are serious enough to cause a *concern*: shellfish, nuts, and soy. And none are bad enough to put me in the hospital -- yet anyway. I just avoid those foods where I can. Do you know how hard it is to avoid both soy and nuts? :p I know, there are other allergies that are worse, but it sure is annoying.

Then I also have that nebulous something else that we just don't *know* what it is. Some form of chronic fatigue? Possibly. I know I'm always tired and frequently (especially lately) weak. Their reaction: "you just need to exercise more". :sad2: I know I most likely have Epstein Barr because I had mono in high school and from what I've been told, if you've ever had mono you WILL have epstein barr. But since there's no cure for it and the treatment is to rest, we haven't put the money out on tests.

I also have a recuring UTI that kicks in at the drop of a hat. Because of that, my lower back and stomach are almost always aching anywhere from a very minor barely-there ache to quite painful.

I suffer from hives of some sort that no one's been able to identify, and the treatments haven't worked. So I just suffer through them. For some bizzare reason, the doctors don't want to try steroids on me but no one will tell me why. :confused3

Lately, I've been fighting a near-constant head ache that ranges from the pressure you get by just placing your thumb on your forehead to a solid ache. Luckily not to migraine status, but I swear, thumb-on-forehead-tension could be used like Chinese water torture. :rolleyes:

The headache, weakness, fatigue and muscle ache are bad enough for long enough now that I've got an appointment with my endocrinologist tomorrow to get me tested. Again. Maybe this time the tests will show something, because half these symptoms were almost non-existant 2 years ago. Shoot, they weren't even this bad last time I saw him about 5 months ago.

My fear is that it'll be lupus. My mom has lupus, and I've shown enough of the classic symptoms for the past 10 years that we've been watching me for that and for hypothyroid, but the tests always come back negative or "borderline-positive". This time, I'm going to ask him to do the most aggressive testing he can do since *whatever* it is that is causing me a problem is in a flare-up right now.

I just had to come here and vent. My feelings have been hurt yet again because of my friends' reaction of being sick and tired of me being sick.

Hello, and you think *I* like it? Try living with it.
 
Rajah, welcome to the club. So many people seem to think if they can't see it, it must not exist. This is especially true of illnesses and disabilities. Dh is in terrible denial about my condition. I think because he was working out of town during the chemo phase and so he never saw me at my worst. I wish I had words of wisdom for you but I still haven't figured out myself how to get Dh to deal with it head on.

Please don't put off any testing any more. There are so many things your symptoms could be a sign of, some very serious. For many of those illnesses early detection is the key to treatment.
 
Thanks Shuga.

My money's on the Lupus *eventually*, if not right now.

If I could have, I would have been in on Monday. Really, I'd gotten so used to having to deal with it all the time (even if I do complain about it a lot) that until I mentioned it to my martial arts instructor and had missed 2 lessons because of it, I didn't think of going in specifically for these symptoms. So I'm glad I spoke to him.

A question for those whose issues are "stronger". All of my symptoms are *annoying*, but none *debilitating*. As it is, I have a hard time making myself get up and go in to work sometimes. And I have a VERY hard time not complaining about it.

How do you find the strength? How do you go through every day without complaining all the time? I know it's annoying to my friends, but I guess I just want someone to *believe* me, so maybe if I repeat it enough they will? I don't know, I just can't help complaining and it's pushing them away and making me feel bad emotionally.

So how do you do it?
 
Rajah,

I don't have the answer for you, but I completely understand the friends thing. Lately, it seems like every time I get together with my friends, they have millions of questions. I don't mind answering any questions but they are the same ones over and over again. Like they can't believe, medicine can have a bad side effect. Like they can't believe that one day you can be walking fine, the next day I walk like a 80 yr old woman. Like one minute I am fine, the next I have stabbing knivelike pains in some part of my body.

The people they 'know' with MS are just fine. :confused3 You know - the lady at church, or the mom of a child in their child's class.

They can't understand that I don't want to plan a 4 day weekend away with just the girls, because I don't self-inject and I am afraid to plan that far out. I hate to put out a lot of money for a quick weekend, when I can't tell what my condition will be. Shopping isn't fun for me - it's a chore because I am too darn tired. Why would I want to fly to another state to shop at outlet malls when I have ones right here? They just don't understand.

I hope your tests come back with something conclusive.

Shuga - I hope you found some tylenol with an extra kick to it!
 
OK everyone, this is something new. I went to the opthamologist today because I needed a new prescription. I had an eye infection a few months ago and today the dr. told me I had scar tissue on my eyes. They cultured it when I had and told me it was a staph infection not lymphoma. Well, you could have knocked me over, I didn't know you could get lymphoma of the eye! He told me Sjogrens patients have a greater risk of lymphoma then the normal population. I didn't need to hear that! Now the scar tissue will have to be dealt with. It's always something!
I hope everyone is doing OK. Have a great night everyone!
 
LBAK said:
OK everyone, this is something new. I went to the opthamologist today because I needed a new prescription. I had an eye infection a few months ago and today the dr. told me I had scar tissue on my eyes. They cultured it when I had and told me it was a staph infection not lymphoma. Well, you could have knocked me over, I didn't know you could get lymphoma of the eye! He told me Sjogrens patients have a greater risk of lymphoma then the normal population. I didn't need to hear that! Now the scar tissue will have to be dealt with. It's always something!
I hope everyone is doing OK. Have a great night everyone!
AIDS Patients are very high risk for lymphoma. I had no idea you could get it in the eye either
 
Msdon Im sorry youre dealing with that, it must be very difficult. :grouphug: :grouphug:


I hope all of you find peace in dealing with your illnesses. :grouphug: :grouphug:
 
Patty3 said:
What did the pain from the gall bladder feel like, was it a punch or sharp pains?
At first it was a crushing pressure - sort of in my chest but all the way through to the back. When it was the most acute it was mostly in my back but was so sharp and excruciating and non-stop.
 
Rajah said:
*hugs* to everyone who's been having trouble and having to deal with these chronic problems. Right now, I think my most serious "chronic illness" is dealing with the friends who don't understand and are just tired of me not "getting better". :rolleyes: Who are convinced it's all psychological and if I'd stop thinking about it I'd get better.

Rajah - I know where you are coming from. In fact I have been following this thread but have been reluctant to post. I have been officially diagnosed with "chronic fatigue syndrome". Wish there was another name for it - it sounds like I am just "lazy". It seems like such a "non-disease" but can totally wreck your life. I don't publicize it very much because very few people understand.

It took years to get my diagnosis and that was dealing with a fantastic doctor. They basically have to rule out everything else first.

I also have asthma and GERD plus sometimes arrythmia. It's all inter-related. My reflux (have had surgery twice for this) gets in my lungs and aggravates the asthma. Then when the lungs don't work just right I get arrythmia.

But all of that is just sort of on top of the chronic fatigue. Many people believe that Chronic Fatigue and Fibromyalgia are the same disease but with different symptoms. Most of the online support groups deal with both together not separately.

A friend with severe fibromyalgia tells me that I have it too (I do have aches and pains), but I have been trying to convince myself that I don't. There's not really any treatment for fibro or CFS.

That whole mental fog thing is known as "fibro fog" among those with fibromyalgia - very common.

I think that sometimes our loved ones try to ignore illness because they don't want to have to face it. It is hard to have someone that you care about be very ill. Right now I have a friend who is getting a second bone marrow transplant (first one failed), another who is an 11 year survivor of stage III ovarian cancer, and another with stage III liver cancer.
 
luvwinnie said:
Chell, i'm sorry, remind me what your diagnosis. I have a lupus-like connective tissue disease and psoriatic arthritis. Prednison helped my brain fog within days.

Michele

I have Fibro and possibly Lupus. I have to be tested for it yearly since my numbers are at the point where some of the meds would be more harsh on my body than not taking them.

Everyone I know has told me I can never have prednisone again. Yeah, it made me that cranky.
 
Shugardrawers said:
Those of you with brain fog, is it caused by your condition or by your meds? I was on a med that made me horribly forgetful, so much so that I'd go to the grocery only to come out not knowing how to get home. I've since stopped that med and am much better but still forgetful. I think that's just my body hitting the end of it's rope with all this though.

The mono sucks and apparently there's not much they can do about it. Anti biotics don't do anything and it's just advil and sore throat lozenges for the next several weeks. Especially in my case, doc is reluctant to prescribe any more than the entire pharmacy I'm already taking.

You know I think that is something I will need to look into a bit more. A lot of my problems did start after I started a new medicine. Thanks for this post!
 
mrsdon said:
Im replying to my own post.
Poor DS has short term memory loss and is extremley weak on his right side from the blood vessel.
hes going through PT right now to try to stand on his right leg for longr than 2 seconds.
He might have to have a brace.
While my NF doesnt cause any physical pain, mentally Im a basket case.
I absolutely LOATH looking at myself or having my picture taken.
I know it sounds petty, but I cant help it.
The tumors are all over my face.

:grouphug:
 
This is the 4th day in a row that I have called my doctor and been unable to get through.. I get, "Please call bak during our regular business hours" .They then name off their business hours and lo and behold,that is exactly when I'm calling them..I'm getting pretty frustrated.
 
Rajah said:
Thanks Shuga.

My money's on the Lupus *eventually*, if not right now.

If I could have, I would have been in on Monday. Really, I'd gotten so used to having to deal with it all the time (even if I do complain about it a lot) that until I mentioned it to my martial arts instructor and had missed 2 lessons because of it, I didn't think of going in specifically for these symptoms. So I'm glad I spoke to him.

A question for those whose issues are "stronger". All of my symptoms are *annoying*, but none *debilitating*. As it is, I have a hard time making myself get up and go in to work sometimes. And I have a VERY hard time not complaining about it.

How do you find the strength? How do you go through every day without complaining all the time? I know it's annoying to my friends, but I guess I just want someone to *believe* me, so maybe if I repeat it enough they will? I don't know, I just can't help complaining and it's pushing them away and making me feel bad emotionally.

So how do you do it?

First of all :hug:!

Do you get tested for the UTIs? Does the doctor find anything?

As for the strength I don't really think I have any. I just stopped complaining because I was sick of their smart aleck remarks.

It is so frustrating to deal with this kind of stuff and not have people believe you or think you are just lazy or something.
 

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