Chronic Illness - Support Group - Page 2

[jjquilter]

Kate,

That sounds really hard for you and Cora too. I hope that your time in Seattle proves to be healing for all of you. One of the reasons that DH and I came back to Toronto was because the cold weather here was recommended for dh's health. He's on the mend, slowly but surely, but it's been really hard, for sure.

I know in the beginning I was really hard on dh because I/we just didn't understand what was going on with him. I remember yelling, getting so angry that he couldn't/wouldn't get out of bed. I have always been the breadwinner in our family and dh has been the one working on the higher education, but I have never hung it over his head that he's been sick and unable to make money. I do mention that without living frugally for as long as we did, there's no way we would have been able to get through this really hard year. It's not a fair thing to do to call something 'mine' just because I bought it -- there's a lot more to having a good and happy life than money.

Marriage to a sick person can be so difficult because the sick person becomes a little different after they get sick. Not totally, but they lose the energy, vigour, spark, that they once had. I still love dh as much, but in a different way, as would be expected with marriage and all the twists and turns that life brings.

PLEASE don't give up. It already sounds like you're on the road to at least a partial recovery. See how far you can take it! I know that's my dh's challenge, to see how much well-er his body can be.

We've had a hard week, dh and I, but everything seems to be much better now. Thanks for helping me get through it.

[Pynki]

I think it can be very hard on spouses to have a sick spouse.. Before we found a dr who would help me, and look into the symptoms i was having i was in the dr at least 1ce every month or 2 complaining about the same things with no help.. Dh was getting very upset.. He wanted to know why i was going to the dr if they were saying nothing was wrong with me... I could only tell him that something wasn't right.. This isn't how i feel, and if i feel this way something is wrong.. Thankfully i did find a helpful dr who is willing to work with me.. Helk she's happy when i come in with an ear or sinus infection.. You know something she can help me with really..

It's hard.. It's hard to look good and feel like @ss.. It's hard to be with your dp and not be able to tell just by looking at them that something is wrong.. It goes against your sensiblities.. You are supposed to be the person who loves them forever, and there is nothing you can do to make them feel better.. You can't fix it..

It is hard.. Dh is a very stoic type of guy, and i know he just feels he is all thumbs when something goes wrong.. He doesn't know how to fix it, and he doesn't know what to do.. So he just freezes..

Sorry.. Ramble..

Warm Squishy Feelings..

Dyan

[Bladestar5]

I have fibromyalgia chronic fatigue, although that is not an agreed upon diagnosis. I also found out that I have a problem where my jaw didn't grow right, though you would never know just looking at me.

I used to have tons of energy, and would climb trees all day. Just before or around the time puberty started, things changed. I would get horrible dibilitating (sp?) migraines where I would just lay and scream in pain, and then such bad lower back aches that I could only lay in one position with a heating pad. My back bothered me for years, and still bothers me occasionally, especially if I stand for too long. I have aches and pains all over, and so tired some days I just want to sleep all day. I feel lazy because I have almost no energy. Extreme temperatures bother me.
All the bloodwork came back normal...although mildly positive for Lupus, which just means that I need to get a re-check in a few years to be sure I don't have Lupus. I had 3 different diagnosis, from 3 different rheumatologists. I am so sick of it all. I am waiting until our move to Florida to see if I can have better luck with the medical community there.
It is nice to see a thread dealing with this. It is so hard to live this way.

[LaLa]

wow, mamas...and I complain about how tough the days are with everyone healthy!
I'm sorry you have the extra burdens

[Pynki]

Bladestar...

NOt to be nosey, but I am, so which tests were mildly positive for lupus.. I ask because i did a lot of research on it trying to figuire out what's going wrong inside me, and there aren't any "lupus specific" tests.. The ANA test tests for antinucleic (sp) antibodies.. Which pretty much just shows whether you have an auto immune problem happening inside your body,and sometimes based on the pattern they can tell which auto immune problem to start with.. THere are other anti-body tests which are more specific with lupus like the anti-dna, and another i can't remember.. But again.. Lupus shouldn't be diagnosed just on bloodwork, but on medical history, and physical examination.. Something like 5% of lupus patients do not have positive blood work... Sorry.. Not that i think you have lupus, but when my ANA came back elevated my rheumatologist told me not to go out without SPF 50 on at all times to make sure i didn't have any photosensitive reactions pop up even though i've never had a problem with it before.. I don't know what this every couple of years is.. I am supposed to have bloodwork drawn every 6 months and see a rheumy every 6 as well..

You might want to look into what they meant..

Sorry everyone, i do seem to go on at times..

Warm Squishy Feelings..

Dyan

[jjquilter]

ANA

ANA is antinuclearantigen -- DH tested high for it as well though he was never diagnosed with anything specific. A high level is supposed to indicate an autoimmune disorder, as Pynki said, but it's one of those tests that it inconclusive without other indicators.

Right now, DH's most recent odd blood result is that he has ridiculously high levels of cortisol.... always something. shrug.

[Bladestar5]

I think it was an ana...but I read also that it doesn't necessarily indicate lupus.
All I know is that unless you are rich, in this area, doctors don't care what is wrong. I always get circle jerked around.

[Pynki]

Autumn...

You just have to find a dr that cares to look.. I know it takes away.. I went through 4 drs in 2 years to get to my dr now.. She is the best.. Now i just have to find a rheumatologist i feel the same way about..

JJquilter..

HIgh levels of cortisol are can be linked with Addison's disease i believe.. My dr was sure that was it, but my cortisol levels are ok.. So nope.. Dead end again...

Listen to me like i'm some kind of dr or something.. Unfortunately for me.. I remember all the stuff I read so sometimes i tend to come off as a know it all.. Sorry..

I know you ladies and I are here for support, so I try not to sound soo much like a know it all, and just be here for you...

I found my dr's didn't tell me anything about the test they ran, so i found out about them on my own.. I'm sure i haen't told you guys anything you don't already know!!

So..

I will shut up now.. and let you all be..

Warm Squishy FEelings...

Dyan

[jjquilter]

Pynki, don't EVER shut up! And don't appologise for yourself... I enjoy reading what you have to say and I benefit from your wisdom and advice. I do this to myself too and dh teases me about it, putting myself down... so don't you do it either!

I quickly did a search for cortisol levels yesterday -- it seems that Addison's disease is caused by low cortisol level, whereas Cushing's disease is caused by high levels. DH is having a test for cushings when he feels well (or as well as he can feel), hopefully soon.

I don't want this to degenerate into talking about medicines and stuff -- there's so much medical information out there, and so little help and support for people going through this. I have my good days and my horrible days. The last two days have been almost euphoric -- dh gave me 2.5 hours off and I ran out to the hardware store and then to a FANTASTIC second hand clothing store where I picked up a whole wardrobe for DD for $1/piece, and a new/old pair of jeans for me, which I really needed. It made me so happy and made me feel so free!!! Yesterday DH and I went for a walk/lunch for almost three hours and I was so pleased that he was able to walk that far, so happy for us that we were acting normal. Sadly, though, it's a huge roller coaster and I'm sure I'll be in the depths again soon. I wish I could just stay even and calm the way he does.

(((((HUGS))))) all around!

[Pynki]

THose days you fel good you just want to wring every little last bit of fun out of them!!! I'm glad you got to do something for you yesterday.. Getting some time to yourself really does make all the difference.. Dh will sometimes get mad at me because i tell him i feel bad, and then want to go and do stuff.. I tell him.. I do feel bad, but i don't want to stay home all the time because of it.. He is a huge homebody so he doesn't get it, but getting out does help me to feel better...

Hope your dh health stays up for you guys...

Warm Squishy Feelings...

Dyan

[CerridwenLorelei]

jjquilter

My counselor is always stressing that cortisol and lactic acid are two of the BIGGEST stress hormones.
the more stressed =more and more cortisol.
I know there are diseases out there that increase it too.
But I wonder if the more you feel like crap,the more depressed you get and stressed because you can't do what you once used to it might increase it
And for you too being the one dealing with everything on the plate by yourself

((HUGGS)))

[jjquilter]

My dh's doctor's theory is that it's like his car is revving up in neutral and that he just needs to shift it into gear and then it'll speed like the wind. (She's great -- I'm so pleased that he finally found someone who listens to him, offers new suggestions every time he sees her, and generally keeps him going.) He hasn't yet done the test to see if he has Cushing's, a disease of ultra-high cortisol levels, but he's planning to and the urine sample container (size of a small carboy!!) has been kicking around the house, literally.

I've had a GREAT few days. The snow is finally melting away with a few warm days in a row. I spent one day walking around downtown, going to my favourite places with dd. I took her to a fantastic chinese bakery and we ate pastries on the street, then went to a cheese shop where she helped me taste everything before I bought it. It was soul-filling. Yesterday we spent most of the day outside, and I even had an hour to myself while my mum took dd for a walk -- I spent it cutting new fabric for diapers for dd and listening to the radio... very relaxing.

Thank goodness for the good days. I'm trying to keep them all in line. DH and I are still having a hard time together, but we keep talking and trying to work it out. It's hard to have two people living in a house who are there most of the time... I love him dearly, but sometimes I wish he's just find somewhere else to spend his time (during the day) for a while.

(that's for the sleep I'm not getting while dd's molars are coming in!)

[mama2jonah]

Hello everyone! I'm a little late on the uptake here, eh? But I too have an autoimmune disorder that is wreaking havoc with my life and my marriage. I have psoriatic arthritis and possible but as yet undiagnosed CFIDS.

For years my husband was also very unsympathetic. It was all in my head, ya know? Well now he's a little better because he can see me working my hardest to find a solution, or at least a partial solution.

I recently came accross some websights that have got me very excited about the possibility of recovery. I haven't got all my ducks in a row yet, as I haven't found the kind of practitioner I'm looking for, but I have hope that I may soon. I'm already feeling somewhat better because of a Candida program I have started.

Now, I know that when some of you look at these websights, you may think it's all a bunch of hogwash, but keep your mind open and keep reading. I thought it was nuts at first too, but it's working!

www.naet.com

www.jmt-jaffmeltechnique.com

www.robertamittman.com/jmt.html

-On the Roberta Mittman websight, check out the article on mycoplasmas especially. That one was really intriguing.