Life of a Professional Patient, Blog #5; Little Victories | Rheumatoid Arthritis Warrior

Life of a Professional Patient, Blog #5; Little Victories

Lately I wish each day were 3 days long.

back injections for nerve blockAfter a morning of correspondence, blog replies, Algebra, English, and Greek lessons, I went in for my latest back injections. The kids were frustrated because I wouldn’t eat lunch. My stomach was too nervous to eat.

Last week, I wrote about the spine procedure I was having done today, if you’d like to know more.

My daughter drove me up to the door. I put on my fuzziest socks from my sweet friend Karaleigh. Still, my teeth were chattering.  Why are these places so frosty?

How did the back injections go?

It went well. The medical assistants physically positioned me a couple times and that hurt. I know I’ve told them I have RA, but I don’t think they have any idea what that means. One of them gave me a shower cap, saying, “We use these in case we get some betadine on your hair, although it’s the same color your hair is anyway.”

The nerve block injections in my cervical spine (C-4 and C-5) were more painful than the ones in the thoracic spine (T-3 and T-4). But who knows why. It was over pretty quickly. I was actually excited afterwards. It was an important diagnostic step with my back and I was glad the doc and I agreed about it. Victory!

Don’t you hate wasting time?

We stopped at a couple of office printing shops to try to order new business cards for the ACR Meetings next month. Test runs of the cards looked horrible. The boys needed to get to football practice so we transported them before trying another printing store.

After about 90 minutes of wrangling, we had some excellent samples. Then, the girl said to me, “My mom has this. RA.” She printed the business cards on the spot. It took her only 5 minutes. A second victory of the day!

I gave her one of the cards for her mother. She told me that her mom has given up on RA treatments since she did not get any better. She described her mom’s hands.

I told her that RA could attack more than her hands – that RA might even attack her heart. She was visibly disturbed. It made me wonder if I’d said too much. I told her I’d pray for her mom by name.

I thought about the RA Awareness campaign we’ve been discussing over the last week. How many of us who live with RA need to know more ourselves? I remember how shocked I was when I learned online about the idea of Rheumatoid Arthritis flares. Ironcially, now sometimes other patients don’t believe me when I say that I don’t have them – or I only have 1 that won’t end – or whatever is right.

We raced back to pick up my football players waiting in the dark. There was no time to get a milkshake for my little Roo with a fever.  He had to settle for Advil. Two out of three victories ain’t bad, but I’ll make it up to him.

The recent post on back issues: Rheumatoid Arthritis and Back Problems.

The rest of the Professional Patient posts:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also https://www.rawarrior.com/kelly-young-press/

32 thoughts on “Life of a Professional Patient, Blog #5; Little Victories

  • October 5, 2010 at 8:26 am
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    I’ve had two of those procedures done. Am going tomorrow to have the RFA done (burning the nerves completely).

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  • October 5, 2010 at 8:31 am
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    Regarding flares. I’ve been in a 4 month long flare, yep, 4 months. So, Am I flaring or is it just a full time battle for me? I don’t know and I don’t care. What I do care about, comfort while battling the flare. It has sucked the life out of me. I’m exhausted beyond all reason and some days can’t make out the fuzz in front of my tired eyes. Only through prayer and the love of family and friends am I able to continue to deal with this. I hope your injections work. I had them long ago and it lasted only two days…just two days. A year later, surgery. Oy. Hugs. Tammy

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    • October 5, 2010 at 9:02 am
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      Hi Tammy, this should last a few days. If it works, then we do a more permanent one – where it takes the nerves a long time to grow back. Like Pam did I guess.

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      • October 5, 2010 at 11:17 am
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        Kelly Im so sorry for what your going through! Your brave! If you need business cards my husband is an old printer and we will do them for free for you…Thanks so much for what you do here on your wonderful site!..Judi

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  • October 5, 2010 at 11:14 am
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    Im so sorry ur flare has lasted 4 months!…Are you on steroids? When i have a flare its the only thing that will help besides the shots like Kelly got! I dont take steroids on a daily basis…Long term it will cause your bones to be bad! Hoping you get some relief! Judi

    Reply
  • October 5, 2010 at 2:40 pm
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    I obviously have to much time to sit and think about this stuff, lol. When I woke up on 4/09 screaming and unable to move I had total faith that I would quickly be pain free. 1 1/2 years later I found this site and Thanked God I had found a few other that had never had significant improvement in their condition. I totally took to heart Kelly’s statements about it being a never ending flare. I can only speak for myself but I no longer believe that I dont flare. (Minus my 1 week from IV solumedrol) I am always in pain, I have many many tasks that require assistive devices and those I can not do no matter if my life depended on it.
    I do flare though. During those times I can’t even lift the sheet off myself to get out of bed, I eat soup through a straw because I can’t open my mouth side enough for a spoon. And on and on it goes. Every minute of every day is a changing adventure with this disease. So my best may not be your best, but I still have times that are worse then other.

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    • October 5, 2010 at 6:10 pm
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      The more I think about that question, the messier it is. To flare or not to flare? For me it might be called moving flares?? I might have joints like some of my fingers that are stiff & painful all of the time – pretty much unusable some days at a 9 – less on some days but never below a 6. I have no joints un-affected. Then I have other joints which are tender if you touch them at all times & painful if they are used. But if I sit very still, they don’t hurt that bad; still they are very far from normal. I have a fever almost every day the last few years, a sign of flare. I could say more, but to me, what I have every day is like what other people describe to me as a flare. It is also called “uncontrolled RA” or recalcitrant RA. It does not ebb, but only progresses. However, it can alternate over a period of weeks or days or months exactly which joints are worst. There is never a moment that I can do even half of what I did before this flare. But, I remember the 3 decades of flares that only lasted 3 days & left me feeling normal in between. I don’t care what it’s called personally. I want it to stop. I’m ready for a pause.

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      • October 6, 2010 at 12:14 am
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        Oh Kelly, I didnt mean minimize it. See I need to learn brevity. My simple point was that this disease fluctuates sometimes every minute of every day. It is a matter of degrees. And boy do I agree, I want it to stop.

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        • October 6, 2010 at 12:44 am
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          LOL you don’t apologize either. Our discussions are valuable to us, to any docs or scientists who read, and definitely to other patients looking for help.

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  • October 5, 2010 at 10:12 pm
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    Tanya, I was overwhelmed when I read your comments. I’ve been so consumed with how my life has changed that I forget sometimes that it could be worse. I will pray for you, Tanya and you, Kelly and everyone else that never has a moment of relief. And I will pray that I remember to count my blessings. I’m so sorry that I complain and feel sorry for myself when I could be much worse. Kelly, thank you again for sharing your experiences and knowledge. You will never know how much you help!

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    • October 6, 2010 at 12:17 am
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      Dee, please do not apologize. One thing we don’t do here is the “mine is worse then yours” game. I know if my story keeps someone fighting then I am happy.

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  • October 5, 2010 at 10:34 pm
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    I used to wonder about flares and the fluctuations of the disease. In particular, I never really had a *good* day for many years, while I was still working. When I quit working and finally took some rest, it was 3 months later that I noticed that I wasn’t hurting as much.

    That was about twelve years ago, and over time I have had times with lots of disease activity (lots of flares, different joints, etc.) and times when I had little or no pain. For a couple years I took Arava, which was great, but when I worked on a high profile, high stress campaign, I had lots of fun but ended up very physically exhausted. A week after the campaign office closed I came down with pneumonia, and since then have been reluctant to take anything else that messes with my immune system.

    My doctors say I’m not so much in remission as that the disease has already destroyed most or all of the cartilage, so there isn’t as much for it to attack. All I know is, rest is really a big key factor. No one likes to change their lifestyle and do less, but at some point the pain meds will put me to sleep anyways.

    It also sounds like you haven’t found anything yet to interrupt the course of the disease medically, reduce the number of flares, etc. You might ask your rheumy about Arava (generic name is leflunomide) as a DMARD possibility – it was really helpful to me. Short term (!) doses of prednisone can also be help break through resistant flares.

    BTW, I consider each inflammed joint to be a “flare”. The presence of inflammation is what makes the difference. It sounds like you have basically had flares on top of more flares, for quite a long time. Stiffness is something else altogether, although the two usually accompany each other somewhat.

    Oh yeah, on exercise and flares: Do at least gentle exercise on the non-inflamed joints. While joints are tender and hot, rest is best for those joints but do try to do something for your range of motion each day.

    Hope some of this helps you and/or others. I’ve lived with the disease for over 20 years, had multiple knee replacements, auto fused wrists, and like you, there isn’t a joint that isn’t affected.

    Reply
    • October 7, 2010 at 4:31 am
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      Mary, tell me about your “autofused” wrists please! Do you mean they eventually fused on their own or did you have surgery to fuse them? If you had surgery, how do you think it turned out having two fused wrists?

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  • October 6, 2010 at 3:46 am
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    I would like to throw in some hope. Seven years ago I experienced hip pain so severe that my daughter had to prise me off the couch & take me to the hospital. I spent 10 days as this pain jumped from joint to joint. I researched my options and like Kelly chose the Methotrexate as it fought the cause rather than the symptoms. I took a very low dose fearing any effect on liver & kidneys (one disease was quite enough). There were times when I had so much fluid in the joints my bones were pushed apart & I couldn’t stand. There were times when I needed to use both hands to bring a half cup of tea to my lips (a full cup was too heavy). RA can be a real bitch, 20 minutes to ease out of bed; no comfortable position while you are in there. I took the methotrexate & an MSM supplement and tried as best I could to balance the PH levels in my diet. I took years but today I am totally pain free most of the time. I have occasional flares when I catch a bug or if I overdo the physical activity. I am totally weaned off methotrexate. My formula for staying symptom free is
    a) avoid stress
    b) get good quality sleep
    c) practice gratitude – this sounds odd but I’m convinced it works. Each morning you wake up feeling a little better – earnestly think “I am so grateful for this easing of the pain.” Apparently if you are smiling & positive it is not possible for the brain to produce the stress hormones that so cruelly work against RA sufferers.
    I can touch my toes – run up and down stairs – go salsa dancing. I am 64 & loving life to the full. It IS possible to be pain free. Does this mean I no longer have RA? I don’t think so, if I push it too hard I can still get a flare up – but heh, these are so mild in comparison to the past. Oh – I almost forgot, soaking the offending joint in ‘electra’ (available by the washing powders in the supermarket) will reduce the fluid in the joint. It’s a long time since I’ve needed it. I feel for each and every one of you – if only I had a magic wand.

    Reply
  • October 6, 2010 at 8:48 am
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    Kelly, I hope the shots do the trick for you. Anything that helps is a blessing!
    Moving flares is a good way to describe what I experience, too. For about a week and a half it was all in my feet, ankles, knees, and hips. About two days ago that stopped and I didn’t need my cane anymore. But now it’s my fingers, wrists, and elbows. Combine this with the fibro racing down my shoulders and it’s a big pile of ick. At least when it’s the lower half I can sit. 😀

    Prednisone and just about any steroid isn’t an option for me because it raises glucose levels and screws around with my Diabetes. When I read about other people’s experiences with it I don’t know if I should be envious or horrified. :p

    Reply
  • October 12, 2010 at 4:13 am
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    Kelly, I’m still reading lots of things on this site..so many posts! But this one spoke directly to me. I have been reading about flares and asking myself “why am I not having them?”, until I read this post and the responses. I am learning so much about my RAD still! And now I understand why I haven’t been having flares. Because it is constant. As was stated above, I have some days that certain joints are a little better, but I am NEVER not in pain, have a low grade fever all the time, except when I am cold lol. It’s amazing to me how this disease “travels” throughout my body from day to day. I keep getting pains in my feet that are sudden and sharp. I will be shuffling along, then suddenly a pain in the side of my foot or in the top that stops me in my tracks and I can’t go on until it eases. It is INSANE! I just wanted to add my 2 cents for those that are just finding this info too.
    I have also developed a lump on the inside of my elbow, in the bend, that is starting to wrap around the outside of the arm. It’s hard but not nodule-like.
    Just so many different things, it’s like this disease just “wanders the aisles” of my body, stopping to poke here and there willy-nilly. Burning pain in the hips when I stand up, pressure pain under the breasts or in the ribs in the back. I can’t lay down when those hurt cuz any pressure is unbearable. Sometimes I just shake my head and think “no wonder people don’t understand this, cuz when I try to explain how it works, I don’t even understand it”!! I mean I know the mechanics of it, but the other stuff…just WOW.
    Thanks for letting me vent.

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  • February 1, 2011 at 9:37 am
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    Little victories are very important in keeping morale high during any illness and recovery. It’s because we have no control over the “big” battles that the small ones become so satisfying. Keep up the good work.

    Eye on the Ward x

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  • August 2, 2011 at 9:51 am
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    Hey Kelly! What do you have your nerve blocks for? I mean, what does it help with? Have you tried the pain patch? Questions, questions I know but I’m curious.

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    • August 2, 2011 at 10:42 am
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      These nerve blocks were temporary so that they could help in a diagnostic way. They did help the pain, so the doc did decide that we should do nerve ablasion in the same areas, which lasted for about 6 months. Read more on that here – click here. Now, some of that pain has returned so I’ll be asking about whether we do it again.

      Reply
  • August 2, 2011 at 11:55 am
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    Hi Kelly – i too have had nerve blocks in my lower spine. The first two didn’t take but the last one did. Don’t lose hope! As far as “flaring:, I never really understood the concept because I felt the same as you with one continual flare since diagnosis. I have some days that have been worse than others but I have never had a day that RA’s ugly head didn’t show itself just to remind me, I guess, that its there!

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  • August 3, 2011 at 8:02 am
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    I’ve only had one big flare. It was in February. I had exercised the night before (nothing unusual), but the next day, i couldn’t straighten my knees, hips, elbows, and my hands and neck were in pain as well. I have had problems with swelling in my hands in the past, and had two carpal tunnel surgeries last summer. I have some synovitis in my hands now (i take celebrex in the morn, and at night daily, and just started methotrexate). about 2 years ago, i had injections in my back for SI joint pain, and trocateric bursitis. So I’ve really been experiencing this for a while. I feel so bad for you guys with these constant flare-ups, because the one I had back in Feb was unbelievable. I was actually stuck on the toilet for a while one day, lol. Kelly hope you find some relief. I’m at the beginning of this journey.

    Reply
    • August 3, 2011 at 11:58 am
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      oh, the toilet stories people tell! Funny and sad at the same time…
      Thanks for the good wishes, the nerve ablation procedure after these “test” injections helped me w/the neck pain & headaches for several months. Looking into repeating it if it’s safe to do so now.

      Reply
  • August 26, 2011 at 12:15 pm
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    I’ve always suspected that my RA and my back problems were related. It’s nice to know that I’m not alone. My back has always been my weakest link. It is much worse than my hands. I’m lucky, my RA has not stopped me from working yet. As a matter of fact, I have to work to support my RA habits… like medical help, RX, etc…. Anything that can help manage pain without more drugs is worth investigation.

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  • June 7, 2012 at 8:21 pm
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    hi there, how was ablation?
    I’m due to have c4/c5 and c5/c6 discs out on aug 24th.
    I’m so so scared and nervous, I’m so tired of the pain….
    I’ve gotten injections nerve blocks, didn’t really work. I’ve had neck issues since i was first diagnosed at 10. 22 years later, my back is against the wall, i wanted the frekkin things out! its gets so so inflamed and that’s it, the day(s) is gone!!
    has anyone gotten relief from disc removal?? its not bulging but its sublimed.
    “sub axial subluxation”
    neurosurgeons say its 50/50 i’ll get a result.
    sigh…..
    ann

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  • June 7, 2012 at 8:22 pm
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    subluxed!! not sublime!! lol, auto correct on my keyboard

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  • July 23, 2012 at 3:33 am
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    I just had two sessions of nerve blocks this last month. I got good results the first time and none the second time. So they decided to go with steroid injections rather than a nerve ablation. Nerve ablation may still be considered depending upon how I react to the steroid injection. I get cortisone injections a lot because I can’t tolerate Prednisone it triggers migraines.

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    • July 23, 2012 at 10:47 am
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      Thanks for sharing Kathy. Good luck with them. It’s strange how it doesnt work the same way every time even in the same person isn’t it?

      Reply

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