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25 Responses to “Juggling Life and a Chronic Disease Like Rheumatoid”

    1. Lisa says:

      OMG I hear you about the stress test! I did one a few weeks ago; my heart was okay to keep going but my limbs and joints gave up on me before I could reach the target heart rate set for me! The nurse/technician (not sure of the title of the woman giving me the test) said it would have to be “good enough”. I felt like I’d failed. :( I really did try my hardest, but as I’ve been saying for a decade: I. Don’t. Run. Why would I start now? Hope you are feeling well and I think this is one place where you can assume we all understand when you have to “set the ball aside” for a time. I don’t think you ever actually drop it. Suspend it in mid-air until you get back to it, maybe. But we all know you’ll be back and look forward to your next list, whenever that is. When I visit your site and there isn’t a new one, I look at the many helpful posts and comments from the past in whatever topic or symptom is relevant to me at that time. It’s an enormous support and help even when you’re not able to post immediately at any given time. Thank you!

    2. Sue says:

      I figured that you were going through a rough time because you weren’t posting anything, but I knew that you needed to take care of yourself and your family. I want to thank you for all of the time, information, and support that your website gives to so many of us. When I was diagnosed in May 2013, I had no idea what RA is. My rheumatologist listens to me and acts accordingly. At this time, I’m at the moderate end of RA but the adjustment is physical and psychological. Again, take care of yourself and thank you for all that you do for us!!!

    3. Anne Loder says:

      Thank you Kelly. You are doing a lot of good. I’m in the bottom. Of a deep dark hole. I’ve been sick with a rough cold for 6 weeks.Christmas was hard because I had to let my grown children run the show. I read your blogs a realize things can get better than you again anne

      • Dear Anne,
        I read your comment on my phone last night, down hard w/ the neck pain. It reminded me how awful Christmas morning was as I woke up early w/the 3rd cold in a row. After a few hours, the kids got me up, gave me coffee, & warmed up the breakfast casserole. In recent years, they have done what you said “run the show,” and I came to accept it. This year I learned again that every year (& day!) might be different as I got to do some things (with help) that I missed. So yes you’re right in the conclusion that things can get better again.

    4. mj says:

      Ha! Gingerbread house shootout!?! That’s the funniest thing I’ve heard all day. Hilarious, love it!

    5. Julie Panto says:

      Hi Kelly,
      Glad to see you are doing better, I figured you were toss another rotten egg like you didn’t feel horrible to begin with. Hope you continue to feel better.
      I too have had a challenging time this year. I got the flu early December and was coughing so terribly hard I threw my back out again, and maybe a rib or 2, I couldn’t believe how much it could hurt, thank God for my 4 ice packs and my wonderful husband who never complained when I needed his help getting out of bed or to the Chiropractor. (My savior)
      (Note: get flu shot earlier next year).
      Now in week 6 I am finally able to get back on RA meds, the worst part is when we have infections and we can’t take the biologics. Maddening.
      Thank you for all the work you do on this blog, it helps us feel we are not alone.
      I am starting another new biologic, my 4th, Xeljanz, do you have any information on this? Pray this one works.
      Love the gingerbread house, I took extra Predisone so I could make Christmas morning and make gingerbread houses with my grand-babies.
      So much fun!
      Thank you again,
      Julie

    6. Donna says:

      Since diagnosis, the most difficult thing I’ve had to learn is how to change my juggling expectations – I just can’t continue the way I used to. I’m finally ok with that.

      For me, when you are missing in action here on the blog, I feel the desire to come ring your doorbell and ask if there’s something I can help with. I just have to do it in spirit to cover the distance. For all the times you are here, you empower all of us with knowledge. The visit I had with my rheum today is evident of that – it was a difficult appointment all because I asked a question. Happy New Year!

      • funny thing – I had just read about that appointment on your blog Donna. I need to go to sleep but there’s always 10 more things you want to read right?
        Talk about wanting to go ring the doorbell & chat – I shook my head it’s so hard to think of a reply to that appointment.
        Your doc unfortunately is typical, and seems like he was trained in the stone ages. And shows how much my blog & yours are needed. But 4 symptoms only he says – that would be nice, wouldn’t it? You wouldn’t need to worry about juggling.

    7. Penny Maroldo says:

      Kelly, I have missed your Facebook and emails and been thinking of you a lot. I had assumed that you were in a bad place…..lots of pain and illness, and unfortunately I was right. I know this horrible disease is unpredictable, unyielding and just plain awful to deal with. But you are such a great spirit….you hang in there and charge ahead and always come out swinging. Please know that what you do for RA is more than anyone I can think of. Many of us who suffer right along with you are forever in your debt. As Rheumatoid Awareness Day is coming up soon, I will be thinking of you and sending love and healing vibes. Keep on keeping on and always remember that YOU MAKE A DIFFERENCE!!!!!!

    8. David says:

      Thanks Kelly, it’s so reassuring to here thing are going alright for you now ( as good as can be)
      It’s been a hard slog through the Christmas period with so much going on.
      Thanks for your commitment to RD in keep us in touch with what’s going on.

    9. xxiv says:

      Hi
      I am new here and would really appreciate your opinions,I appologise if im posting this in the wrong place:)
      I am 28 and none of my friends/family can relate to whatever it is that is going on with me so I am frustrated at times as would love to talk to people whom I can relate to:)
      Since I was about 20 I have niggles with back problems and sciatica (mri confirmed prolapsed disc)Then I started to suffer from bi lateral hip pain that woke me in the night, burning and aching,my GP confirmed trochanteric bursitis, this came and went on and off over years and I presumed it was in some way related to my back, always worse before my period. Then I started to get the exactly the same pain in both shoulders,always in the morning, odd, as if id been ragged about in my sleep! told GP was given ibuprofen xrays (they were normal) and nothing more was said about it.Then after my pregnancy in 2010 things got worse. I retuned to work from maternity leave working night shifts, napping in chairs and on floors left me in agony I would stiffen up all over! I was exhausted most of the time but blamed my shifts. 2 weeks before my period I would get terrible pain and stiffness in the mornings in both shoulders and hips as if the tendons and muscles were inflamed, I would feel feverish and generally unwell.The pain would at its worse extend out to my elbows and knees, wrists and knuckles intermittently, this would all peak then my period would arrive and everything would taper off for a couple of weeks. I gradually became depressed as I was in pain most of the time yet unable to describe how. When I got up from a chair I limped and hobbled for the first few steps, it was embarrassing at work, lol! After about 18months of this definiative pattern I went to my GP with a picture of a stickman showing all the places where I hurt. He assumed I must have fibromyalgia and refered me to a Rheumatologist. Blood work showed I had a severe vit d deficiency Rheumatoid Factor of 19.6( more than 14 is +ve for that particular lab)Low white cells (neutrophils) and mild anemia, everything else inflammatory markers were fine!. I took all the vit D supps and felt no better!! And had an awful feeling as every step I took was agony that I might just drop dead at any second. Looking after 2 kids and working full time was exhausting and the worse thing was that to look at me I looked completely normal my partner bless him, kept telling me I was just stressed:)
      The first app with rheumy I was prescribed anti inflammatories he said at this point he didn’t know what we were dealing with.2nd app 4 months later was 4 months of hell waiting for. Everything all just got worse my shoulders felt like real damage was going on inside as did my hips,other joints hurt intermittently but the shoulders hips +legs were 99% of the time. I was given a steroid injection in my leg a systematic one…and HELLO LIFE AGAIN!! Waw the result was almost immediate!I had an amazing summer, chased round after the kids went through the day with out nodding off after lunch! I was started on hydroxychloroquine and have been on them for 6 months now but for me the only real relief I get is from steroid injections which I can only have2 per year..boo! The big prob I have is lack of diagnosis as I have no swelling (except from shoulder that wasn’t swollen on on the day of app and an ankle too!!)Rheumy says its inflammatory arthritis but not typical of RA as my hands are minimally affected I do have a painful bunionette of late on my little toe im not sure if this is related but that is red and swollen. He said at my last app that he thinks its early RA.
      So…..im so sorry to have gone on for so long but I would love to know what your opinions are (if I didn’t bore u to death already, haha)
      As reading all the RA first symptoms, not may are “typical” Does my story sound similar enough to fit the Early RA diagnosis?
      Thank you for reading.
      Warm Reagrds,
      Stay Strong x

    10. xxiv says:

      AAGH!
      sorry i have just posted the above in the wrong topic, it was supposed to be in a “flares” discussion.
      Is there a meet and greet area?
      I would still love to hear any comments or comparisons to my quandry, but appologize again…lol!:)
      On the real topic however …why do these rotten diseases stike us when we are at the most busy times ofour lives. I said to my Rheumatologist why can it happen when i am retired or when i dont have young children (which are exhausting when you are in good health, lol!)It seems more cruel that when others depend on us physically and financially we are being attacked. It really shocks me at the amountof pills i have to take each day just so i can bring a wage home and look after my family and im onlly early on in my “whatever it is disease” my heart truly does go out to all those who are in pain , suffering and just trying to get through the day as best they can and cope with every day life..which is hard enough.
      My warmest wishes to you all.
      x

    11. xxiv says:

      Hi again,
      sorry starting to sound like the ‘annoying orange’ here, hehe!
      I also wanted to ask a question about medication but i dont know how to start a topic.
      My question was regarding DMARD’s.
      I have been taking hydroxychloroquine for 6 months now with no effect and my repetetive menstrual flares just go on and on..
      is it normal to have very little effect from these drugs?
      I suppose its hard to say what i would have been like for the past 6 months without the tablets but i just wondered if any of you have been prescribed anything like that and what exactly im supposed to expect, again sorry to pester you im just in a very clueless situation and trying to find me way around.
      Thank you for listening :)x

    12. Janet Taylor says:

      Kelly, so good to have you back .It is just important that you take care of yourself and those wonderful children you have.

      I too have been off the grid. I lost my husband unexpectedly last November. the Holidays were very hard and the stress has not help my RD. I am trying to keep going the best I can. I have two wonderful adult children and four grandchildren to feed my soul. But they have their own lives and I try not to ask too much of them.

      I think it is really important to get the word out that RD is more than just arthritis. I have many of the same symptoms which you have talked about.

      Be well Kelly……..

      • Donna says:

        Janet – so sorry for your loss. Take care of yourself and ask for help if you need it. Thoughts and prayers are with you.

        • xxiv says:

          Hi
          I totaly agree with you, i haven’t found anywhere as informative online ( in books..or people) as i have here, its as if RA is some secret disease that you are left to figure out on your own…..Well not thanks to here.
          Bless you all and bless this site, Kelly you are AMAZING!:)

    13. Dawn R. Droescher says:

      I missed you!! I am so glad you are back. You are the only one who understands and is able to express in print. I have been all over this site…it is so refreshing. I was diagnosed a couple of years before you and there was nothing in the way of meaningful support. My doctor was/is excellent, but she was still learning at the time. I had to learn a lot on my own. Thank you for your devotion!

      • xxiv says:

        Hi
        I totaly agree with you, i haven’t found anywhere as informative online ( in books..or people) as i have here, its as if RA is some secret disease that you are left to figure out on your own…..Well not thanks to here.
        Bless you all and bless this site, Kelly you are AMAZING!:)

      • xxiv says:

        Doh ! ive replied to the wrong person, sorry Donna i was replying to Dawn:) My silly gritty eyes make me clumbsy online and i keep making mistakes *shakes head*..ouch!

    14. Vanessa says:

      I was worried about your absence. I learned more from your site
      (Including how to learn about this sort of thing) than in any other one location. This site has been a Godsend for me.

      Don’t feel guilty… Just feel better as you can.

    15. Kelly,
      Believe me, I wish it were easy to push the RAD rock uphill because if it could be done by a certain number of people, you’d get 100 times that many who would volunteer to help you! So, you take that “break” whenever you need to do so, and if any of us can help push at least a couple pebbles uphill for you, please just yell out–don’t be subtle cuz RA Warriors understand how heavy even pebbles are for those with RAD! Gentle hugs to you from all of us!!
      (:

    16. Kelly, I admire your courage and determination. Many people take a lot of the things you mention in your post(s) for granted. People like you are on this earth to remind us of that every day, every relationship, and the ability to function are ALL special gifts and NONE of them should be taken for granted. Keep fighting the good fight!

    17. Jessica says:

      Just want to say thank you so much for all you have done and all the information I now have because of your blog. If it weren’t for you I would still be suffering under a bad doctor. I got TB while taking Humira and as the pain came rushing back, my Dr said one day, “I don’t understand why you are telling me that you have pain. You don’t have any swelling.” Because of you I did not second guess my pain, which is severe, but instead I dropped that doctor and found a new and really good one. Thank you, thank you, thank you.

      Jessica

    18. Ashley says:

      Hi,

      I’m newly diagnosed with RD (last month, finally after having been sick since Halloween) and this site has been heaven sent for me. So informative and supportive, I’ve been able to learn so much here and I’m grateful for that.

      I’m struggling with the fact that I just can’t do things the way I used to and it’s so frustrating. I’m a personal assistant and I’m used to juggling not only my life but the lives of my employers as well, always have something going. Now I hurt pretty much all the time with fatigue that’s absolutely brutal and I’m still trying to carry on as I always have but I’m starting to feel like I have to admit defeat and accept that I need to make adjustments to my lifestyle. Luckily my employers are fantastic and feel health should be a priority and want me to be happy and healthy, in fact I was just told yesterday to take some time off because I need it. I’m so lucky to work for such incredible people who understand and care about me and my health.

      I have a great doctor and have started Enbrel, Methotrexate will start in a few weeks. I haven’t felt well, or better rather, since starting the Enbrel, hoping that changes but who knows, only time will tell I suppose. Until then I’ve realized that I need to really plan things based around how I feel that day and accept that some days I just won’t be able to do all I want to do, I need to learn to be okay with that, it’s a process.

      Even though newly diagnosed I am already finding myself surrounded by the “you don’t look sick,” “oh yeah I have that too,” and my personal favorite since I’m asked almost daily “how are you feeling?” “Are you feeling better?” comments. It starts to really bother me after awhile.

      It’s a learning process dealing with all these changes but very happy to have found this site, I think it will be essential in helping me to figure out how to deal with everything. Thank you!!

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