Moanalogue - April Edition

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SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 4/3/2010 4:01 PM (GMT -7)   
Im a bit late with this edition, we were still posting in Marchsmilewinkgrin
I thought we could make this edition about what we hope to achieve this month with our health/bodies (even if we are dreamingturn )
I would like to achieve - getting of prednisone after 7 straight, long years! I am finally down to 1mg and hopefully by the end of the month 0mgsmilewinkgrin 
I would also like to get out of bed in the morning and have not a thing hurt on me - anywhere (I know - dreaming:-) )
I need to keep doing 1/2 hour of yoga each day, so I dont hurt more than I already do.
Well thats me - hope you guys can come up with major achievements - and hears hoping we can actually make themyeah
 
Take care everyone
Jo
Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


wearyRAsufferer
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Date Joined Mar 2010
Total Posts : 2327
   Posted 4/6/2010 7:43 AM (GMT -7)   
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.

so very tired
Regular Member


Date Joined Mar 2010
Total Posts : 26
   Posted 4/6/2010 6:55 PM (GMT -7)   
everyone is individual and each circumstance is your own... Therfore it is ok to feel how you feel.

I am thankful and know I could be worse and that there are many worse than I .but I still feel the anxiety and depression you wrote of..
I joke about my "pity party".... but it is not funny.... and it's no party...

SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 4/6/2010 7:08 PM (GMT -7)   

I know the feeling wearysad

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 themdevil )

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

Take care

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 6/12/2010 11:58 PM (GMT -7)   
I thought the monalouge was gone sad   ....but here it is :-)   (from April and it's now June)...
 
Everything is relative....and I know I'm so much better off than others, and I'm thankful for that...but you can't be hard on yourself when pain and fatiuge have taken over and beat you down....sure, putting things in to perspective helps, but the fact is, we are sometimes dealing with unforgiving flares that have interrupted our lives and our family's lives.
 
Hoping for a pain=free summer for us all!
 


golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 6/30/2010 6:56 PM (GMT -7)   
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

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 7/1/2010 10:38 AM (GMT -7)   
golitho-

I've moved on to a new stage- one that I am uncomfortable about.

I remembered everyone worrying about me and feeling overwhelmed by it and just wanting to get some normalacy back.

Now 2 1/2 years later- I have never again had a major flare so I am fully functioning and although I do not feel great and I am very fatigued I look 110% compared to when I had to be fed.

Now I feel ignored and that people are too blaise about my condition. Then I feel guilty for truly I am blessed for making such a comeback....


Does anyone else feel this way?

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/1/2010 1:02 PM (GMT -7)   
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..
 


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 7/1/2010 8:28 PM (GMT -7)   
Camama,
 
That is such a great point about the concealed diseases. I went for a bone scan today, and didn't get the best result, and the lady who went over my numbers with me begins lecturing me on what to eat, hands me a pamphlet, and I tell her that I have GP, which is type of stomach paralysis, and I can't eat brocoli etc, and she still keeps talking! telling me maybe if I cook it well, blah blah..uh no! everything I eat is that of baby food consistency, she was ridiculous. What part of baby food didn't she understand? Sorry to get off on such a tangent, but some people just don't get it, just like RA, Lupus etc shakehead

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/1/2010 9:33 PM (GMT -7)   
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!
 


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 7/2/2010 9:28 AM (GMT -7)   
I know right? sometimes our rheumies can be so dense! I think the MTX has truly taken its toll on me at this point, and I need to switch to something different. Not only does it make me B12 difficient/low red cell count, and I've tested this out myself, which my rheumy says is does not, it is documented to contribute to osteoporosis, gosh it is toxic isn't it? I'm going to ask to be switched to Arava, which I know has it's own side effects, *sigh* but at only 39, and according to the paper I was given at the ob/gyn office, the starting age for the dexa-scan is 65 normally, I can't believe they even wait that long for something like this, if I had went along until 65, I would have been in horrible condition! I would have been a hunch back shocked
 
I know what you mean by repeating yourself over and over, and then they finally hear you! I'm sorry it took him/her that long to listen shakehead The funny thing is, I've been in pain and gone to the local urgent care and been listened to/taken more seriously then at a typical rheumy appointment.  Generally, I'm not asking for pain medication, I usually ask for a dose of pred, please and thank you and now I guess I won't be doing that tongue Normally, my rheumy will just tell me to take my pain pills, blech!
 
I guess we have all concluded that we must show our diseases on the outside for anyone to take us seriously.  It is shame, and you are correct there are many fakers out there and it's ridiculous. The other day my son drove me to town, he is going on 18, and we were in the parking lot, and we are watching a man struggling with his walker, and he isn't elderly, but trying to juggle the walker along with his things to get out of his car and into a building, and my son said something about the placard that I have, and that I could have used it that day, blah blah blah and that we could have parked closer mad Yes, I was a bit stiff, but then I explained to him (lectured more like it) that I was able to get to and from just fine, and if I had used it then that man would have had much farther to walk, struggle, getting to and from.  That man needed it much more than I did.  Just like the SDI, that should be reserved for the people who need it, but it has been soured by those who take advantage of the system, and it is so wrong shakehead The person you mentioned should never had to of gotten to that point before becoming eligible, very sad.
 
It's okay, those issues get me riled up as well :-) Just ask me son!

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2327
   Posted 7/2/2010 10:16 AM (GMT -7)   
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.

so very tired
Regular Member


Date Joined Mar 2010
Total Posts : 26
   Posted 7/11/2010 8:36 AM (GMT -7)   
I do not have handicap parking...( probably WILL sometiME in the future) but I hate to see the abuse of them...

There are days i wish I had it ....if my hubby is driving he drops me off at door and he will park.
For me it is not so much the walking but dependign how my wrist/hands Are, carryign bags items to car is difficult....

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 7/25/2010 9:21 PM (GMT -7)   
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.
 


Nikiangel
Regular Member


Date Joined Nov 2009
Total Posts : 29
   Posted 7/26/2010 6:45 AM (GMT -7)   
Ok well I had to share to this.  I have been dealing with this disease for 35 years...I'm 37 by the way.  I went on disability because now, the disease has eaten so much of my bone its a wonder I can do anything.  I cant tell you what a hard time I had getting disability because of the age that I am.  However, once they actually SAW the deformation in my hands and the fact that I walk like a penguin, they "got it".   I have a handicap parking, however I only use it when i know I'm having a bad day.  Otherwise, I try to walk it because with my 7 year old, its better for her to have a nice brisk walk.  As for my pain, flaring, I've been flaring for 2 years and no one can get it under control.  However, I do see others worse than me so I just keep on trucking.  My hope is for them to have it under control before my daughter starts school.  So then I can at least fuction and go to her school activities.  From my "fingers" to God's ears.   Hope all of you are enjoying your summer as best you can.  ((((( gentle hugs))))) to all.  GB
Juvenille Rheumatoid Arthritis - diagnosed at age 2 am now 37
Currently on - Remicade, Methotrexate, Prednisone
 
"God gave you this because He knows you can handle it, dont stop fighting!" - Grammy
"God brought you to it, He will see you through it"
 


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 8/8/2010 10:49 PM (GMT -7)   
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! shakehead   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.
 

The Bear
Regular Member


Date Joined Mar 2007
Total Posts : 364
   Posted 8/31/2012 2:15 PM (GMT -7)   
hi camama - long time no speak - how are you? Life here in the uk goes on aas ever, we have some special lunatics and freaks running the country bu that's nothing new. Drop me a line by email its on the record. stay well
The Bear
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