OT-The ways this is an unfair disease! | Arthritis Information

In light of that I decided that sunlight and some positivity were the order of the day. Its too easy to dwell at the unfairness of this, its too easy to get into the depressive thinking that comes very easily with this disease and its too easy to become totally consumed with the misery that it brings. So I'm trying to 'do a Margo'... I got one life, and am going to make the best of it. Hubby loves me, son loves me, cat adores me, family loves me, we work, the bills get paid, heatings on.... aint it great?

Cool.

This disease is so misunderstood and has ruined my career, my relationships, my childrens' lives and my livelihood. I would like to mention though like my brother always says  concerning his son with cancer..."it is what it is". "The alternative is worse".

jode

Hi everyone and your posts are so welcome. Today what's bugging me the most is what I want to do hurts the most! I like to play golf and tennis with my husband, but when I do my left foot ends up feeling like it is 'on fire'!! The pain is like nothing I've ever experienced. Pain pills do stop the hurt, but with all the meds I'm taking you'd think they would fix this!! Now, that is depressing me! To the doc on Wed. to tell him this. I hope he can help me. Lynda

Went to the garage sales today, and got in and out of the car a million times, plus walked around a 'neighborhood sale' which was about 10 blocks, no pain yet, yippy. Waiting.

Taking methotrexate in a minute.

I also think that you can be in a dark place and still have hope.  I hope that the meds will work, and I hope that my family will rally behind me, and I hope that neither of my kids will have this.  I also know that my body was created, and being created there has to be a blueprint and a rhyme to the reason...I may never know that on this side of  the world, but in time I will know.  I can only hope to do the best I can everyday, and if that means there are days I only survive than, that is the best for that day. 

I do feel alone for the most part.  Without all of you I would absolutely be alone.  Am I angry because I am alone...no, because I do not have the energy to foster a friendship and am quite tired of the fact that it has always been me that has done the initiating in all of my relationships.  So for me, right now, I do not need the stress of relationships.  Just living is stressful enough. 

I've reached a point in my life where there isn't any unfairness....it is what I make of it. 

My life with RA has been somewhat different than many of yours.  I was diagnosed with RA when I was well into my fifties.  I was at the point in my career that I could retire and I did.  RA contributed to my ealy retirement but I was ready, unlike many of you who are younger.  I don't have children at home that I have to care for.  It's just my husband and myself.  My only response is, my retirement isn't what we thought it would be.  Our traveling is limited to a certain extent.  Sometimes I have to be in one spot until my RA is controlled and that can take months.  There are times when we have to change our or modify our plans. My husband doesn't mind, in fact he's the first to suggest a change because he sees that I'm not doing well.  I'm stubborn and many times won't give in to the disease. 

If there is unfairness in my life it's that my life with my husband will be shortened.  I have no doubt of that.  I've already developed cardiac and pulmonary side effects from RA.  Even though I feel 75% better the disease marches on.  I would like to have another 20 plus years but that's unlikely and that's no fair.  Lindy 

 I really need to speak to people that understand. I just got married in June. 

 Well, the first of Aug. I had to go the the ER with my shoulder...that's the major joint affected. My Rheumy was out of town that week, so they had to send me to a new MD for a shot in my shoulder joint. The bill from the hospital visit was 7.00 and after my 0.00 payment to the other MD and a bill just came and I owe him 7.00 more. If you haven't already guessed, I don't have any insurance. 

 I haven't been sleeping worrying about all these bills. I think Tuesday night I slept a total of 45 minutes and had to work on Wednesday because there was no one else to do it. I feel like I am flaring up but don't feel like I can go to the Rheumy because of $ and work.

But it's just not that. As most of you know, this sh*ty disease isn't going to just go away anytime soon. I have a wonderful husband and even though I told him prior to us getting married I don't think people really understand without first hand knowledge.

RA SUCKS! I hate it, I hate it, I hate it. I don't really have anyone to talk to about all this without feeling more guilty about making my family feel bad. 

I take Humira twice a month with the sure click pen but it STINGS. I used to take Remicade but it stopped working but the MTX injectable weekly. So not only do we have to take crappy meds but even my lortab doesn't always do the trick and it's hard to ask my Rheumy for it sometimes. I don't want him to think I'm all about taking them just for fun

I feel so helpless right now. Thank you for taking the time to read my sob story.

Lindy, I was struck by how similar our circumstances are.  I was diagnosed recently at 55 and am also retired.  My children are grown so I only have two grandchildren to deal with on a monthly basis.  I love caring for them, but it's tough on my arthritic spine.

I was stunned to read that you believe your life expectancy has been shortened.  Have you been told that as fact or is it something you feel in your heart?  My blood work does not show raging RA but I do have vasculitis, which can also be life threatening.  It's under control now, but your post has me thinking I need to discuss this with my RD. 

My sister was deathly ill with RA nine years ago at age 62 but has done so well all these years and at 71 shows no signs of illness.  I just assumed that tweaking meds as needed would keep RA type diseases at bay indefinitely.  Am I wrong about that?  Anyone who has more information on this and how it affects life expectancy, please enlighten me/us. 

Jesse, I have pulmonary fibrosis caused by sarcoidosis and exacerbated by RA.  It can be a slow process or a rapid process.  Mine to date has been slow but it involves both lower lobes.  I've also developed cardiac issues and the cardiologists weren't sure if they're related to RA or the meds that I've been on.  They've finally decided that it's a combination of the two.  No one can predict one's longevity but based on the above my life expectancy has been shortened.  I've not gotten better but worse.  I've had an increase in symptoms and diagnoses in the last few years. 

Because we're on DMARDS and Biologic treatments doesn't mean the disease has gone into remission.  Your sister was very lucky.  I've been on Enbrel, MXT, AP Therapy, Humira, and now Remicade and they've all been tweaked.  At this point in time we're still hoping for further control of the disease.  Damage to your synovium and joints is an ongoing process unless you're in full remission, few people reach full remission. In my particular case damage is also ongoing with my lungs and heart.  I might be fortunate to live longer than predicted with these medical issues but the chances are slim.  It's not something that I dwell on but it is something that makes me live each day to it's fullest and in the moment. 

Well, I don't think it's shallow.  I'm freaked about one of mine.

:-)

Pip

Lynda, awesome thread. 

RA is unfair.  I hate that I can't play with my daughter like I want to.  I want to get down on the floor with her and roll around and know that getting up off the floor is simple rather than a huge production involving various pieces of furniture.  It would be nice too not to walk like a duck.  I mean they're cute animals and all but come one!  And I'm all for the cute shoes too.  I'm sick of wearing sneakers and ugly nurse type shoes.  I don't have any disfigured toes but my feet can't take heels of any height.  And I'm a shorty so I need heels.  Now what's up with that!

But I'm a stubborn person and like Margo I am making the most out of this life, shortened or not, pain or no pain.  RA isn't going to stop me.  Now, I'm going to go drop myself onto the floor and roll around like an idiot.  If I'm not back in 60 minutes, call someone.  LOL No, just kidding.  I'm not rolling around on the floor any time soon. 

Christina...I'm with you....I hate that I can no longer find shoes that I like that will fit my feet.  I have to buy extra wide shoes now and there doesn't seem to be much in the way of sexy/cute shoes for wide feet.

This unfairness makes me so fatigued, well not the unfairness so much as the disease and the unfairness of it. This morning I got up after sleeping pretty well for me (only up at 2am for awhile!), and then felt like going right back to bed. I've felt that way all morning. Had 3 cups of coffeeee with caffeine, walked around 'freakmart' with my husband to buy paint for our kitchen cabinets HE"S painting all by himself (sweet man)!!, I'm not even trying to help....my hands would never make it.

So, it goes a day of 'half-asleep' living. dreary, really. No enthusiasm for anything today.??? Do you all have these days? Love ya,Lynda

I have my flipflops here, but I am determined to wear these all day since the flip flops are sort of unprofessional. I do wear them and I am used to people staring at my toes, I just wish the shoes looked better!  It gets akward when my students keep asking. I just tell them I broke them! They seem to buy it!

I guess that is something that is unfair. I wish I had more energy for my students. I know I am more fun than this! Hopefull I will be once this enbrel kicks in!

Lindy, thanks for the explanation.  I'm so sorry for the multiple health issues you're facing.  But how strong and mature you are!  I expect, even though you're not a young adult anymore (me either), you're still young enough so that you can expect more successful therapies down the road.  Please keep your good mental attitude.  You're an inspiration to us all.

Count me as another who hates not being able to wear the nice, open shoes I like, but for a different reason.  With this vasculitic neuropathy, my left foot feels like anything but a tie-on shoe is going to fall off, so it's sneakers for me most of the time or those awful tie-on Oxford type shoes.  Boy, that will make a girl feel old and frumpy!

I am sorry you are having so much trouble. Big hugs to you honey.

The reason I think this disease is unfair:

My childrens childhood is changed forever.

My marriage ended due to this stupid disease.

I am so tired of being in pain every single day of my life.

I am mad because now I am a single mom and have to go though this alone.

I pray that I can live semi-normal at least until my kids are raised.

Thanks Lynda for the thread..... Love ya honey

 This is a terribly unfair disease because it hurts so many good people!! LIke you. Give your children a hug for me.

Here's what I think of this stinkin' disease

Love ya, Lynda