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Did you/Do you tell people you have RA?

Posted , 8 users are following.

kim94523
kim94523

Hi RA Friends, newly dx-ed and have a question.  Did you tell people outside your immediate family/friends that you have RA?  For instance, did you tell people at work?  I told my bosses becuase I had to due to needing time off and also to explain frequent illnesses.  But I am wondering if I should tell my staff, who also sees me out often or leaving early.  By the same token, I don't want to be defined by my diease or be seen as someone who wears it like a badge.  I am struggling with wanting to explain myself but, conversly, not wanting to sound like I am making excuses for myself.  

I had a number of vaccines Monday, including Shingles/live vaccine.  My Rheumy required it in order to put me on Humira.  I was fine until Tuesday mid day, then I started falling asleep while sitting in my chair, on the train, at home in front of the TV (this has NEVER happened to me before.  I am the type who has to take sleeping pills to fall asleep.  I have NEVER spontaneously fallen asleep sitting up).  Then, this morning, I just couldn't get out of bed.  Stiff, sore, exhausted.  I told my bosses.  I have a call into my Rheumy but everytime something like this happens, I am compelled to tell people, but hold back thinking maybe I shouldn't.  If I had cancer, I would tell people.  I just fear people don't take "just arthritis" (which we all know this disease is NOT) seriously and so I'll sound like a whiner.  Then I thinnk, maybe I should give a brief description of what RA really IS when I explain that I have it.  Then I think - much like this post - that is just TMI.  Ugh.

Thoughts????  Advice???

1 like, 23 replies

23 Replies

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  • donna82193
    donna82193 kim94523

    Posted

    Hi

    Its a difficult one and I too am newly diagnosed. I told work and close colleagues. I have told family but unless u read up on it then people dont understand. The usual answer I get is "yes I have a little rheumatism too" aaahhhhhh. If only people really knew what it was really like. I hate it and hate myself for sometimes giving into the pain and sleep. I dont want it to.rule my life and my relationship with my partner but it already is. Its so difficult. I also get oh your a bit young or are u in the right hospital dept. Im not that young but too young for this horrible disease.

    Hope u are ok soon.

    X x x

  • loulou282
    loulou282 kim94523

    Posted

    hi kim

    i agree people dont know how awful this disease is especially r/a. r u sure the sleepyness isnt a side effect of the drug? i dont understand how u r working maybe your r/a is managed a bit better than mine. i coulnt think of going back to work!!!  i hope you get the answers you are looking for. just a quick note, do you work full time and has any of your bones been damaged?

  • kim94523
    kim94523

    Posted

    Hi you two - thanks for the replies!  Oh, I know... One of my bosses showed me pamphlets about his gout and a few other things as if to say, "everyone has something ..." mind you, he's 72 year old.  I am 48.  I don't understand his lack of concern, frankly.  He was always the "nicer" of my three bosses.

    My RA is not yet treated so it's not a medication side effect.  I was officially diagnosed 3 weeks ago, had to wait to see a Rheumy and now have to go through vaccines before starting treatment on Humira.  I refused Methotrexate and other DMARDs because my dad had RA and other crippling auto-immune disorders and died of liver cirrouses not related to alcohol (he didn't drink) but to the treatment he received.  So I can't take meds that have likely liver side-effects.  Anyway, how am I working?  Better managed?  Ha!  Nooooo... not managed at all.  I am barely functional and getting worse by the day.  I have had symptoms for about 4 years but everyone blamed it on stress, being overweight, etc. and I had to move out of state 4 times in 3 years so never saw a doctor consistent enough to evaulate on-going problems long enough.  I have been back in CA since 2012 and seeing the same doc, but I would often not talk about the pain becuase I thought I was in for an inevitable "lose weight" lecture.  Because of my family history, I am always given and request the ANA test, which is negative.  And my Sed Rate has been ok.  Until recently, it went up and my doctor THEN ordered the Anti-CCP test.  My results were 218.  I don't know if the scale numbers correlate in the UK but 0 is no disease, 20-60 is mild to severe.  Mine was 218!  And that's when the saga officially started three weeks ago.  

    I have had bronchitis and tendonitis requiring serious medical treatment 3 times in 12 months.  Now I know why.

    So, yes, I would LOVE to not work but in order to not work in the US, you have to be put on disability.  And I don't think my doctor is going to do that... at least not before she tries to treat me.  I have a high-school aged son to support, so I can't not work without a doctor putting me out on disability.

    So, i have to try to get the sympathy and understanding from my employer to buy me time until I either (a) get better or (b) get worse and be put on disability... and I just don't know how to do that.  sad  Sorry for the long rant.  I feel so helpless.  Thanks for listening!

    • donna82193
      donna82193 kim94523

      Posted

      Hi

      Mine started very quickly. I have just returned to work as I have one primary school child and one teenager (just). I only do three days a week at min 4 hrs a day and oh my its hard. Not sure how long I will carry on. Im not at the point where I could get disability cause I can look after myself most of the time. Its a real push though. Im scared to start mtx next week cause of the liver damage but I so want my life back.

      Do u have a pension. Could u retire on ill health then get a part time job to boost money. That is what im hoping to do whrn it gets too bad.

      Take care. X x x

    • kim94523
      kim94523 donna82193

      Posted

      Hi Sweetie, Donna, don't be afraid of Mx!  I hear good things about it for MOST people.  I am pre-disposed to liver issues that's why I can't take it.  Don't be afraid!  Get your life back!  And if it doesn't work, they will try other things.  Mx is the first line of defense because it works so well for so many!  I'm sorry if anything I said scared you in any way.  

      Yes, I am down to 6 hours per day but I had to ask for that and my Rheumy reminded me that the goal of treatment is to get me feeling better.  She is very very nice and she said it with kindness and empathy but I did remind her there are a lot of weeks between NOW and treatment starting and treatment working.  I could handle the job if it weren't for the commute.  It's 1.5 -2 hours.  That's what really wears me down.  Maybe I will look into temporary housing near the office.  Just thought of that.  My son is old enough (19) to take care of himself for a days at a time.  He's in highschool (late enrollee in primpary school when he was young) so still lives with me but I could live else where during the week.  Hmmmm... 

      And no, I don't have a pension.  I have a private disability policy that will pay 70% of my salary until age 67, which because of my current salary, is a good deal of money and I could live very well on it, but I would have to be considered disabled and right now, I am not.  I don't think it would be a far cry to receive that distinction soon if treatment doesn't work, however.  

      I hope you feel relief very soon and your children are well and happy!

      Are you in the UK?  Is it warm there yet?  Maybe if it is not, the warm weather coming on will bring a little relief.  I know warmth helps me a bit.

    • donna82193
      donna82193 kim94523

      Posted

      Hello

      No u haven't scared me at all. Ive done lots of reading. Some sites are very negative. My girls are very happy and fuss bless them. They are 10 and 13. My partner is lovely but does get frustrated with me. Partly because I have not come to terms with it yet. My consultant is lovely but my doc is horrible. Partly because I wont take drugs that knock me out. He doesn't get my partner works shifts. So if something happens and im zonked out I wouldn't forgive myself.

      I have a pension but it would be a struggle to live off it.

      Weather is awful in uk. Its rainy amd windy and has been for more than a week.

      I will fight this. It wont win!

      Donna

  • elizabeth11246
    elizabeth11246 kim94523

    Posted

    Hi Kim

    I have had R/A for the past three years and it as not been easy, first MX tablets after three weeks stomach problems and sick so went on to MX injections, much better on the stomach but the side effects were bad infact after injecting 15mg I have 36 hours of feeling really bad, but I still soldier on, you have to be positive and don't let it get you down or you will never win.

    Now I am seventy years old and still working, I work 30 hours every week some times more and most of this time I am  stood up. Don't get me wrong I have had some  really bad times walking as become painfull but I won't let RA get the better of me so I walk at least three of four times a week. Think poitive Kim and I am sure if I can do it you will be able to over come.

    All my very best to you and hope my story as helped.

    • kim94523
      kim94523 elizabeth11246

      Posted

      Thank you, Elizabeth!!!!!  God bless you!  You go girl!  I am staying positive most days... truly.  I am just "socked in" today and feeling a little scared and sad.  It's not my normal disposition.  smile
  • caz53535
    caz53535 kim94523

    Posted

    Hi Kim94523, yes I do tell people, and yes I also get the "oh arthritis, yes I get that" response.  I told my boss and some others I work closely with because like you I needed time off, especially at first, and with the brain fog and tiredness I felt an explanation was needed, and I didn't want them to think I was skiving off.  I can't do things I used to do, I take longer, don't concentrate very well anymore and I sleep a lot, it is a nasty disease, and as someone said to me on this forum recently, largely invisible.
    • kim94523
      kim94523 caz53535

      Posted

      Hi Caz... Yeah, I noticed fogginess but I didn't really associate it with RA.  I forget things all the time now but I am OCD about writing notes with electronic reminders, and calendaring things with reminders, so I stay on track with my iPhone.  I think because I am OCD organized, I am able to make up for not having any answers in my head by referring to my filing system!  LOL!  Are you in the US or the UK?  What did it take for you to get disability?  I think here in the US, you have to be able to not perform the daily functions of living such as bathing, dressing and feeding yourself.  I can still do those things, but when I work all day, I CAN'T do those things.  I have to order food in and skip showering.  I just collapse when I get home.
    • caz53535
      caz53535 kim94523

      Posted

      Hi Kim.  I am in the uk and I don't get disability I work - I did go part time for a while, and now back on 6 and a half hrs per day. I am just like you though, sometimes I just get home and collapse, then when I wake up I just have cereal or something easy like that, I live alone so it does not affect anyone else :-(  did that today and am now back in bed ready for more sleep, it feels like I don't have a life anymore sometimes.  You are deffo more organised than I am, I scribble notes to myself and lose them!  Oh well ... :-) 
    • kim94523
      kim94523 caz53535

      Posted

      Awww, Caz... yah, I don't have a life anymore.  Haven't had stamina for years but blamed it on other things... Well, we have a "life" on here at least.  smile  As for being organized, necessity was the mother of invention!  And I lose my written notes ALL the time!!!  I have to put everything in my phone or I'm in trouble.  ;-)
  • kim94523
    kim94523

    Posted

    My Rheumy just calle and put me on disability for four weeks so I can rest until I start treatment and to see what the initial effects of treatment will be.  Wow!  What an answered prayer.  I didn't even really ask for it.  I asked about TODAY and the nurse, who was actually the one speaking for the doc, put me on hold and came back and said that the doc suggested being out for 2-4 weeks then reevaluate.  They are faxing a letter to that effect.  It's like the Rolling Stone song... "You can't always yet what you want" (wellness) "but if you try sometimes, you get what you need!"
    • donna82193
      donna82193 kim94523

      Posted

      Hello

      Good thats great news. Does your company not pay u while u are off sick? Thats awful if not. Im lucky I get six months full pay but then have to complete a year at work before im entitled again.

      Im determined to keep a life. On good days I go out etc. So im taking the good days big time. I know ill suffer the next day but who cares lol.

      Take care. X x x

    • kim94523
      kim94523 donna82193

      Posted

      Hi Donna, yes, I get paid sick leave and because of my position it is "unlimited/discretionary". After three months continuous time off within one year, they have the right to not hold my job open. But no one wants that, including them--thank goodness. 

      You know, when I have good days, I do do things but it leaves me stuff and frozen after and sometimes for days. I am sure that is because I don't have treatment yet and hope/believe/have read that will improve.

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