Moanalogue - April Edition

Well here is my  April moan a log-

I have been feeling depressed.

I have a lot of financial, kids, husband issues so that may be why- but ya know what else is new????

I am wondering if it is the Humira that I just introduced 2 months ago.

Or maybe it's the fact that it has not made me feel better so that is disappointing me...

Anyway it's all piling up and I just wish I could wave a magic wand....

Then when I read about the pain some people are having and how they don't get relief from their meds....I remember my horrific onset and I think SHAME ON YOU!

Be thankful you go to work every day.

I know the feeling weary

When things start to overwhelm me I think of how better off I am than others too, sometimes it puts things into perspective for me.  I call it my 'why me, then why not me day'. I really cant think of anyone I would wish my bad health on (although there are some days when someone annoys me I could quite easily give it to them )

Its good to talk on here to people who understand what you are experiencing.

Take care

Jo

I was told recently its very common for us all to feel Grief at what we have lost! So we grieve for the person we were or for life without pain or for what we can no longer do.

I feel since my last massive flare in April that saw me in hospital for 8 days that I've been really struggling with my emotions and this disease. I thought I could just ignore it, take my meds and push myself through the pain. The flare just threw me side ways, a big slap in the face. A hey this disease can seriously affect your life. My kids have been shaken by it, my husband treating me with kid gloves, my work flapping about checking up on me. Friends always asking how I am. Its really hard to handle.

I don't want to be defined by RA, told to pace myself, yet keep exercising, try this new toxic med it'll only knock 10 years off your life!!! It all gets a bit overwhelming at times.

I also feel guilty, as if its my fault I flared. I was doing too much, etc

So thats my rant. I'm trying to be positive, I'm going to see a psychologist on Friday to try and sort my head out and I'm starting hydrotherapy again next week. Hopefully I'll bounce back in no time, golitho

Yes....it goes back to it being a concealed disease....I'm nowhere near as bad as I was....but I'm never 100% and am always on guard. But, people don't see the fatigue, the pain you do still have because you can feed yourself now (I can walk again)....they forget b/c they are not living it, but if you say much about it, you're just complaining....When you say, "I think I better pass on that..." because you know your body best and its limits.....you get snorts, arguements, or snide remarks...

I feel like I've been in limbo for years....can't move forward 100% because I never know how fast I'm going to be knocked down again...it's happened so often over and over again, it's like I am afraid to live completely now.....

Golitho, I hope that talking to someone helps immensely.  While you are telling people over and over again the same answer, each person who asks, doesn't KNOW the answer...and I'm sure they're asking out of concern and care for you.  It's like the receptionist at the desk....she forgets that each person who asks where the elevator is hasn't been there before...even though, she has to give the same answer 100+ times a day. But, you are also emotionally dealing with this as well as the physical...like you said and maybe letting people know you appreciate their concern but this is very difficult for you to deal with and to please back off a little (in a tactful way so they don't do a 180 in their concern!) will help give you a little peace to  work through this yourself.

Hang in there...big, but gentle, hugs to you..

Man, I'm so sorry to hear that, Mom....people just don't listen.  When my feet were so bad back in the beginning...I cried to my rhuemy for months...nothing he gave me helped...one visit I said (for the 20th time), 'if the cramping would just stop...maybe I could handle some of the pain better..." He said, all shocked, "your feet are cramping? lemme give you a muscle relaxant!" Something, I basically had been saying I needed for the past 5 months! If I wasn't so relieved to be finally getting something, I would have strangled him.

I think of someone on this board a couple of years ago trying to get SDI....fought it a few times, finally, in the last court case, the judge took one look at her knarled fingers and apporoved her request making a comment on how she could have been put through so much when her problem was so obvious.....how come it takes complete deformity to prove one cannot function? It's because there are so many cheats and liars out there...it's really too bad...and now with the economy so rotten, it's going to be even tougher for those who need the assistance.

sorry to go on such a down note!

I have to agree about the handicapped parking. If you are having a good day why park there? The exercise is good for us anyway! I have a SIL that had a car accident that broke her knee cap 10 years ago and she got a placard. Well I have seen her walk (doesn't need a cane or anything and walks with a normal gait) the craft fairs all day long but she still uses a handicap spot everywhere she goes. it annoys me and embarrasses me if I am traveling with her.
A lot of stores have an over abundance of handicapp spots because of the abuse I think and that puts the able bodied at a disadvantage when the weather is bad.
I'm all for no discrimination of the handicapped but the people who take advantage should be ashamed of themselves.

Yeah, it's a tough call...we've all been there...I've gone to the grocery store feeling okay only to have to stop mid-way through my shopping unable to move another inch...what to do then? if I didn't have an up-front spot, I'd never make it back to the car.  I no longer have a card and I have a new rhuemy who refused to give me a temporary one during my last awful flare????  Haven't encountered that one....but it is tough for me emotionally, I've never abused having it and it takes a lot before I ask for it (typically when I have a flare that's lasted more than 5 weeks)...and for him to say 'no' was like  slap in the face.

When you need it, you need it...and it's unfortunate that people judge.

I hope you find some reliefe from your 2 year flare!   BTW, I have to ask, I was diganosed with JRA - after years of doctors scratching their heads as to what was wrong with me - did you by chance have Rubella (German measles) as an infant?

I read once, having it increases your risk of having RA of some sort....espeically in women...I had it when I was 2.  My doctor insisted I get an MMR shot at 25, not knowing better, I said, 'okay'....a few months later began a 3-year ordeal trying to get my arthritis under control so I could walk again.....coincidence? hard to say for sure.......It was a few years after the fact, reading on information, that I put it all together and started wondering if it was coincidence or all linked together.