I'm finding it more and more difficult to cope. I've been lurking
here, posted a few times. But now I realize this is the place I
need to let it all hang out!
I was originally misdiagnosed with PMR and on Prednisone for over a
year and a half before switching Rheumatologists. I was rather
young for PMR and wondered if the diagnosis was correct. Now, after a
very rocky time getting off the Predinsone, I am on MTX and
Leukovorin. Only problem is mixed results.
The newest problem, my shoulders which are very painful now and I'm
losing range of motion, PT is due to start in a couple of weeks.
I dread that because I fear it will be painful and won't really
help. But I'll give it a shot. If not then I'll GET a shot
or two of Cortisone.
Depression is getting to me recently too despite being on an
antidepressant. Probably no one really remembers but I asked
about my ability to continue my hobby, astronomy. I haven't been
able to continue it due to fatigue, lifting the telescope and other
equipment, etc.
The other problem is a husband who although a good man otherwise is
completely emotionally detached. He clearly does not understand
this or understand that I need some emotional support. An
engineer, he isn't much for emotions anyway but the lack of
thoughfulness, lack of touching, hugging, consolation when I'm hurting
badly makes me hurt more. We have no children. I am
fortunate to have a couple of friends who are supportive and seem to
get it. But the most important person in my life has run from
it. Instead he would rather make me feel worse about the things I
cannot do anymore (at least for now). I remain hopeful I won't
always be this bad.
Sorry for the very long post. There is of course much, much more
but don't want to wear everyone down. I think I need to hang out
here more and talk about it more, maybe that will help me cope better
and perhaps I can offer some words of encouragement as well in the
areas I'm versed in.
Thanks for the ear.
Nanette
I just wanted to reply and mention that sposal support is not always there for you when you have been DX. When I was married, it was ok at first for him, but he "couldn't take it anymore" ...welll no kidding and I am the one with it.
I divorced then met a man that I thought the RA didn't matter. He didn't like the RA either. THey get to ignore it, they get to walk away from it, we don't. RA was not the only reason for the breakups, but I still think it was the main determining factor. THey always want you up doing what they want you to do but when a flare hits, it is impossible. THen quite frankly, when you feel better, you really kind of want to do the things that you want to do because of your energy level.
Oh well, I think I just met up with selfish men that thought more of themselves than others and wanted catered to and you cannot cater to people when having RA!
I hope things improve for you cause the alternative is very difficult at times.
Nanette~I remember you!! I think I said early on that your astronomy hobby (job too isn't it?) would be a challenage at best. I'm sure you're seeing that....but you don't have to give up on it all together.
I've had horrible times with my shoulders at times. Then at other times....like right now it's the least of my troubles. If it was me I'd get the cortisone injections right now. Considering I've never had PT I can't advise; I do believe it works from all I've heard....but it takes time. Sometimes; a long time. If you get a shot of cortisone you'll have your motion back within days. WARNING: Don't go lifting heavy telescopes the next day though. You'll ruin your progress.
Once you've had the cortisone injection have your doctor increase your meds slightly. Obviously your RA is active or that shoulder wouldn't be acting up like it is. Several times I've had a cortisone injection and increased my MTX by one or two pills and by the time the effects of the cortisone wears off I'm back up to speed.
As far as the marriage troubles goes I don't think there's a married lady (or man for that matter) here that does understand EXACTLY what you're going through. I'm 35 and I'm on my second marriage. My first husband wasn't cruel; but he was absent more and more as the years went by. It was easier for him to be on the golf course in the afternoons and on Saturday than to be at home with his sick wife. Sure would be nice if we could walk away from it; wouldn't it?
My second husband went into this thing with eyes wide open. In fact he had to talk me into marriage because I was scared of a repeat of the 1st. He's kind, considerate and caring....but everytime I'm in a low point I worry constantly that eventually he's going to get tired of this and begin to spend more and more time away from me. I'm not sure it's a fear I'll ever get over. I was almost glad when my first husband was gone....but my second one is a totally different story. I've come to depend on his love and support and I think I would fall apart with out him.
It's really good to see you. Come back more often and spend some time with us. It does us all good to spend time with friends that truely understand every aspect of our lives. There's just something to be said about not feeling so alone in this battle. And it is a battle whether it shows or not. There's not a day that goes by that we're not reminded that our future is uncertain.
Welcome Back Nanette. I remember you too. I think we are all grieving the things we used to be able to do. I haven't given up on being active again but it sure is taking a LONG TIME. What a roller coaster ride. I was thinking the other day, in the last year, I think I might have had 20 days that I felt GOOD. Now that made me sad
It does make a difference to come here to vent. Please use us to get it out. It is a horrible, nasty disease that lurks 24/7. WE NEED SUPPORT.
I think we have to keep trying other options and pray someday we and our rds come up with the right mix. Never give up.
I have the same insecurities as Lovie and wish I felt more support from my hubby - even though I think he is more supportive than most. They just can't understand and I ask myself - Would I want to live with this lump on the couch
I have to go to an awards presentation for a program I am involved in this morning. I am dreading it. I am grateful for their donations but it is going to be hard to muster the energy to ACT grateful. Most people, including the ones who I will be seeing this morning, knew me as a vivacious, energetic, enthusiastic person. Since RA - I have hid away and gained 20 pounds. I dread running into people
I am sorry Nannette. This is not about me but it goes to show you - we all need to vent. Don't get rid of that astronomy equipment, don't give up hope and come back here and vent as much as you want. I swear - if I did not have this place - all I would do is think about my RA - now I dump here and can get away from it awhile
My first marriage lasted 11 years; but it was about over after 5. We were still friends and continued to hold it together for the childrens sake....but I want to work hard to keep my second marriage together; and keep it good.
Any and all advise on this subject would be greatly appreciated.
I think we need to be pretty flexable in marriages where there is a chronic illness. You have to get support if you're sick, but you need to be able to give it sometimes too. Even though I feel like sh*t some days, if my husband has a cold or is going through some kind of crisis, I baby him. I try to pick my battles too. Having RA isn't fair and I feel like I have more responsibility and definitely more pain than my husband, but I need him.
Lovie, I think you were smart to keep a friendly relationship with you ex. I don't know how old your kids are but they will be a great comfort to you both now but especially later. My relationship with my husband has its ups and downs but we have adjusted .My two kids are my biggest fans and supporters.
Nanette, and All,
Just had to chime in here...I am a 48 year old man on my 2nd marraige. When she married me, I was healthy and viral. Then RA smacked me down in '93, and I became disabled within a year.
She thinks she is handling it pretty well....but I don't. She feels cheated. She resents the fact that she works and I don't. If I mention my RA or how I'm feeling, I can see in her face that she tunes me out. She can actually be mean about it sometimes. I have abosolutely no one to talk to about this....thats why I'm here.
She just can't empathize with me cause she and the rest of my family just have no idea what this is like. I didn't know either before I got it. I have learned not to tell her how I feel unless she demands that I do something that I can't do, then I have no choice but to remind her that I have limitations. It can be a lonely existance. So you are not alone....and it's not just men who don't understand.
These message boards do wonders for me, so keep posting and reading. I feel for you.....Dale
Welcome to AI Dale. I'm glad you're here. I think this would have to be even harder on a man....and we do have several here that could use your support as well.
Welcome again.
Welcome Dale. We need that male input. I know it goes both ways but you can provide "us girls" lots of good adviceI had to smile about the ENGINEER remark. My dad is an engineer and god knows if anyone knows about those guys it is me and my mom. They are definately their own breed.
My husband is not an engineer, but he could be...not only because of the way he thinks, but the way he acts when it comes to things like RA. He his supportive and somewhat sympathetic-I know he cares about me and my health but...he does not always show empathy. I dont want to be babied, but him asking me to go rent a carpet shampooer and clean the carpets "since I am not going to work anyways" reminds me just how much he doesnt get it. He is not trying to be mean, the totallity of RA just does not compute for him. I know how you feel. It doesnt mean we've gotta kick em to the curb, it is just one of those things that suck about RA. Being misunderstood. I did want to give you a word of advice about PT. PT pretty much sucks. Especially the first few times you go. You are gonna be sore after and you are going to wonder why you are wasting your time. Stick with it, you will start to see some results...or at least if you are going to get any results it is going to take a couple of sessions. You just need to stick with it. I will admit that I quit after one visit the first time I went through PT. The next time I went I told the therapist that I was a bad patient. It was sort of in jest, but I wanted them to know that I was a potential quitter. It helped because he stayed on my case about it all the time. Like I said, it was all done jokingly, but I did kind of feel like he would be disappointed in me if I didnt show up. You know, every little bit helps! Good luck! Nanette, completely agree with Lovie, have the injection(s) now! I've always been afraid of cortizone and refused the injections and lived in complete H#$@ for six months. All this time was going to PT, because I'm a huge believer in pt, but was just getting worse, worse & worse. RA isn't a muscle or tendon problem. It's a disease, autoimmune, your body is fighting your body. the cortisone will allow you to use your shoulders, like dry off after you shower , wash your back, even shampoo your hair. Hope you are soon a "whole lot better" mary You crack me up...I can tell by your ranting that you are indeed a former nurse. And wow, throwing out Poxes on everyone...
No matter what knowledge I may have when it comes to helping others, I just feel lost sometimes when it comes to dealing with my own ds. I can say that I feel more empathy towards people who are really in pain now though.I worked the units for awhile but spent most of my time in the OR (over
15 years) I loved the OR. I haven't worked for a long time
now and thank god, there is no way I could work right now, just no
way. I also had my own business for awhile doing medical records
stuff for docs after I left the OR. When people are in nursing school, they think they have every ds. they study, once they become nurses they miss every symptom they get! Funny how immune (no pun intended) we become so quickly. I think that we also make some of the worst patients too sometimes! I know the med records and also billing and coding are good business now. I would love to find a way to get off of my feet but still work in the health care industry. Why did you stop the MR biz? Are you retired or just on hiatus?
Finally, she is adressing the insomnia problems which I've had for
YEARS. So far, like with everything else it seems, mixed
results.
As for the engineer husband....there is absolutely nothing that can be
done about that. I've tried to explain it to him, he's seen me on
bad days, it just doesn't register. We've been married over 23
years now. I've seen him through two major cancers involving
surgery and chemotherapy. Fortunately, I believe we have a cure
for both. The worrisome one was the Stage IV Colon cancer and he
is 7 years postop now. I took very good care of him, I'm a former
nurse. I don't expect him to do like I did. All I want is
some emotional support and encouragement....not gonna happen it
seems. So, time to deal with it and move on its just some days I
could use a hug and an "everything is going to be okay".
Back to RA worries....my hands, the MTX has had zero effect there as
well my feet aren't in very good shape except that they don't swell
like they did. Knees are aching more but I think that is maybe OA
instead of RA.
I'm figure (after doing tons of research on the net) that she will add
another DMARD to the MTX. About 40% of people are not responsive
to MTX and the addition of another DMARD improves the response. I
don't think I'm at the level yet to turn to the biologics, I really
don't want to get into those too early. I fought the MTX for a
little while and then was glad to get it, at least its hope.
I would also like to say a pox on any doctor who does not prescribe
adequate pain relief for anyone. This day and time no one should
suffer. A pox on the DEA for making it too tough on those of us
who need big time pain medications and making the lives of doctors
tougher and a pox on those who abuse the drugs too the real source of
the problem. OKAY..RANT OVER...LOL.
YEAH, I love to throw poxes on people. LOL.
Like you, when it comes to my own stuff I seem to have brain
drain. I started off with Grave's Disease 10 years ago. The
symptoms were classic and I totally missed it. The RA symptoms,
again pretty classic, missed it. I'm a pretty good diagnostician
otherwise...I just can't seem to get it with myself ever!
LOL. My big worry now is with 2 auto-immune diseases,
what's next? Should I expect more? Some of them are very
nasty and its scary to me. I haven't seen any studies or data
about that, people who have more than one major auto-immune
disease getting even worse ones later on. Sjogrens sorta goes
with RA but I worry about the 'biggies', not that RA isn't big
enough...thank you very much. But you know the ones I'm
talking about.
Its been a long row to hoe, I've been there for all of them. Just
when I thought things were finally going to settle down, now RA for me.
Isn't that special? I have to wonder if all that stress didn't
maybe 'trigger' the RA?? I do know stress makes my RA
considerably worse be it emotional or physical.
Yes I think stress plays a big factor in immune disorders in general. I have always had strong physical reactions to stress whether it be ulcers, IBS, hives, migranes, etc. When I was young I would just melt down whenever I got upset. As I became an adult I starting keeping more of my issues to myself. It tends to scare people away when you flip outYes, no doubt that stress gets to me sometimes in major ways now.
Problem is, hubby is one of those hysteronic types who makes mountains
out of molehills and complains constantly. It drives me straight
up the wall of late. He is also a perfectionist and a neat
freak....OMG!!
Thing with the MR work...it means sitting for very long hours. I
can't sit too long, I can't stand or walk too long or even lie down too
long. I just hurts if I do. So, I have to move. I
waken early every morning, very early. I try to rest in the
afternoons...actually I HAVE to rest in the afternoons, if I don't
there is big pricetag to pay. I don't always sleep but just have
to be quiet.
The worst thing has been keeping my mind off this stuff and trying my
best to be productive. Housework...oh its terrible. I'm
looking into a housekeeper now but it makes me ill since I've always
done it. Gardening has been limited to containers...thats a
killer for me too. And of course my astronomy has gone completely
down the tubes except for online stuff.
If it were not for the internet, I probably would be living in a room with pads now.
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