I’m Not All Better, Just Too Polite to Whine; Yet Victory Is Still Sweet
Please don’t miss the news at the end of the post! I had to put A LOT on one page since it’s been a few days!
My endocrinologist was so excited about my attending the ACR in November and winning the WebMD award in December and it’s really fun to share after being a patient there for several years! However, there is some confusion that comes from these events. Doc commented recently about being glad my RA is better so that I can do these things. Did someone forget to tell my disease?
How do I even answer such comments? Yes, with help, rest, and medication, I can sometimes go somewhere and look “normal” for a few hours. But I could not even walk sometimes in Rochester and Chicago. It was just like being in labor how I forced myself to shuffle along from seat to seat. I was in agony much of the time during those trips. It took weeks to prepare and weeks to recover. Just last week (YES, FEBRUARY!) we caught up on laundry from that time away.
Yesterday, we went to Tampa to speak to a large group of patients at a museum. It was dark in there, but I promise that was me. It was a long day, getting up at five a.m. because we had to drive across the state before the program. But it felt like a great victory to make it through the day for several reasons: It takes days of preparation for me to do something like this. Every other ball has to drop. Blog posts aren’t written. Emails aren’t answered. Calls aren’t returned. Slides are created. Facts are checked. Points are memorized. Literature is printed. The briefcase is packed. Map copied. Clothes cleaned, pressed, and laid out. Of course it was all worth it – especially finally meeting Emily and her family! And we forgot to get a photo together – when will I learn this lesson?
Katie Beth took a day off studying calculus yesterday to be aide, videographer, and driver. After the event, I shuffled with Roo around the museum a little, mostly sitting on benches. You know how it is when you force every single step? Yes I sat on the floor a few times in the gift shop because there was no seat. When we got home, I handed out my souvenirs and lay down while Katie Beth fixed us something to eat. And you guessed it – I fell asleep without dinner.
I can do this once in a while, but not as a regular pace. From my vantage point, I KNOW that we are not all the same. Some have it easier than I do. Many have it worse.
I lived about 40 years of almost normal health most of the time. I know the difference. I haven’t had a “pain-free” moment in over six years. I don’t talk about it most of the time and most people assume joints only hurt when I mention them. Apparently we get used to pain because I seldom mention pain until it passes a 7 or is affecting over a dozen joints at once. Usually, the disability concerns me more than the pain. For example I knew better than to hold the microphone with my left hand yesterday because it would cause a hand cramp in front of everyone. My right hand can’t hold it at anyway because the first two fingers don’t bend enough anymore.
It IS all worth it and I chose to do it. But wouldn’t it be great if people didn’t assume RAD is gone just because I refuse to whine about it?
A few important announcements:
Check your email!
Last month, many of you sent an email to register for a survey with Find a Cure Panel to earn a $25 donation for the Rheumatoid Patient Foundation. We’ve received notice that the survey will be sent soon by email. It is important that you fill out your survey as soon as possible and remind your friends to do likewise. This should only take you about 15 minutes and only the first 200 entries will be accepted.
T-shirt birthday coupon!
My own birthday is Tuesday and I’ll try to post something fun to celebrate. Meanwhile, our t-shirt manufacturer is celebrating their birthday right now with coupons for us. See all the styles and sizes in our t-shirt store here. See codes below.
Coupon Code: GiftsforMe
Discount: $10 off an order $40+
Coupon Code: GiftsforYou
Discount: $20 off an order $75+
Coupon Code: GiftsforAll
Discount: $35 off an order $100+
Disclaimer: Please enter coupon code before completing checkout. Must have the minimum subtotal to qualify for savings. Discount is applied to the base price and does not include taxes, shipping or additional charges. This offer may not be combined with other offers. Coupons valid until 02/21/2012 11:59 pm Mountain Time.
NOTE: The NEW RA WARRIOR STORE is HERE – click here!!
Can you come make Sweet Memories with other warriors?
How often have we heard how wonderful it would be for lots of us to meet together in person? Watch this video and read 5 reasons you’ll want to attend the Sweet Memories gathering in Texas coming up in a few weeks!
Central Florida Meet-up!
One more thing! Our Central Florida group is having lunch at Jason’s Deli in Orlando – click here for map next Saturday at 2 p.m. You can RSVP by email to Kelly AT rawarrior.com if you like.
Recommended reading
- Ways we’re so much alike: Can We Find Similarities with Rheumatoid Arthritis?
- Reasons we’re so different: The Immune Fingerprint and Rheumatoid Disease
- Why we’re never alone: The Mouse in My Pocket: We Are Not All Alone
Thank you Kelly, and the Young Family for letting those of us with RAD take your precious family/personal time away so that we have a voice through you/your mom/wife/friend.
Kelly, I also want to thank you for what you put your body through in order to achieve everything.
Thank you Terri for reading and listening to my little bit of whining tonight.
This blog post really spoke to me. I am sure so many of us who suffer with RA and other illnesses that are not so visible go through the same issues and concerns. I love my RD she is knowledgeable and treats me and not just my disease, but my one pet peeve with her is that she would always tell me I am one of her more stable patients because I can still work at a full-time job. Finally I had to tell her I wished she wouldn’t assume that because I am still working it means I am OK or stable. There are many days when I am pushing myself to go to work and it is only by the grace of God I can make it though the day; only to come home and crash on my bed.
I have never been much of a complainer and didn’t see reason to start when I was diagnosed with RA. I wish more people, doctors would get this. We may not whine or complain, but that doesn’t mean we are stable or we are Ok or our disease is doing better. This most often the farthest thing from the truth.
I pray that God will continue to give you the strength that you need to accomplish all must do.Not just for today, but for all of your days. You are certainly in my prayers.
Thank you Cammie. I know the prayers of warriors like you and David and others helps me keep going.
Yes Kelly the victory is sweet. It is what we do. While we have RAD, we are working tirelessly to not let the disease define us. Just because we do not whine does not mean it has gone away. This week I had to go to an all day meeting the day after my 4th rituxan infusion in as many weeks. One of my colleagues who is aware of my health issues sent me a note the next day appreciating me being there and providing the leadership and being a beacon of light for change. In the end she closed the note by saying how often a disease can take the individual we are right out of us. But she said all she saw was a triumphant warrior. It is what we do, it is what you do that inspires us to go out there each and every day to support one another and get the word out. We do it as long and as hard as we can. And when we do you are so right, the victory, no matter how small, is very sweet. Take care and God Bless you!
David
It was so great to meet you!!! My husband and I had a giggle reading this because we both said the same thing- how did we not get a picture??? I get so caught up in the moment that I just forget. I’m sure there will be a next time… even if it’s a while away. And thank you again for coming to speak! I had suggested it quite some time ago- once I found out that you were somewhat local for us. I know that we have challenges, but I forget sometimes to apply them to other people, even when they are battling the same things. We don’t even make plans anymore, for the most part. And people ask me all of the time how the kids are feeling. What do I tell them? I don’t even know. They complain about a scratch, but when something is really bad they don’t talk about it. One day we will make people understand.
P.S.- It’s funny looking at the link for Emily’s story. Things were simple then! That was before steroids, before Mixed Connective Tissue Disease, before Dermatomyositis. Never thought those would be good times…
Dear Danielle, you can write more about Emily if you’d like for her story or for a guest post here sometime. I know we’d love learning from you about how you manage it all! It was a treat to meet you all & I don’t know if u saw my comment on Facebook that I noticed Kevin’s Scout leader uniform – Roo is a new Tiger scout after his older brothers who are already Life Scouts & working on Eagle.
I just may take you up on updating Em’s story at some point. She is a classic case of how it starts as just one disease but can become many. I don’t think that people realize that can happen, like how having the “AI trigger” is really like opening the floodgates.
When my son first started scouting as a Tiger, I was told that I would have to be a den leader to get him in. So I became one. I made Kevin help after a couple of months because he is an Eagle scout. 🙂 He was suffering from his errant thyroid at the time and just needed something. I stepped down this year. I just can’t keep juggling work, doctor’s, IV’s, therapy, school stuff for the kids, and make den meeting plans. Kevin is currently our Bear DL & Committee Chair. He loves it!!! I love working with the kids, but the parents were stressful for me. Now I use that night to go to my women’s Bible study group. It gives the boy’s time together without us girls. Congratulations on having 2 working on Eagle! They say that not many keep going after age 13 or 14 nowadays. By 16 most are done.
I’ve blogged about it some. It makes me feel bad I can’t camp or hike but the boys understand mostly except for someone who says they can even w/ RA that is apparently in remission – i suppose.
Kelly – I’ve been checking out your site for a few months but this is my first post! 🙂 I’m in my mid-40s and was “officially” diagnosed just this past December. Your blog entry today could have been about me. In addition to being a mom and wife, I work full time out of my home and travel frequently for business. It is such an effort for me to prepare for each trip, I’m miserable when I’m gone and when I get home I’m completely useless for days. I seldom mention how I’m really feeling because I don’t want to be known as “that woman who whines all the time”. THANK YOU for sharing your stories and being such an inspiration for all of us “warriors” who politely battle our pain and fatigue day after day.
Thank you too Sandi for sharing. I hope your family is gentle to you when you have recovery days – the kindness of my kids is the only redeeming thing. The prepare hot baths, tea, and bring me food & meds…
I think it gets to be futile to mention the pain after awhile. It doesn’t stop, it only changes level of intensity. So why keep on repeating that you hurt? I get tired of explaining to people who don’t get it that the pain is constant. I literally hurt 24/7/365. The last time I was close to pain free was the day I gave birth. I’d been on pain meds and had to stop cold turkey when I found out I was pregnant. And my pain level increased to a level that I’ve never before felt and hope to never feel again. I’d been on pain meds meds 7 months of my pregnancy (not knowing I was preggers-long story) and stopping made my body go crazy. So when my OB gave me Stadol in my IV during labor, it was such a relief.
The people who I am closest too know the pain is constant. They don’t need to be reminded of it as they live with the effects of it just as I do. I get tired of discussing it. To do so keeps the focus on it, which for me makes it worse. As much as it’s always part of my life, I don’t want to discuss it all the time. I prefer to let it be the elephant in the room. There but not acknowledged. Why continually acknowledge it to others? They have to be as tired of hearing about it as I am of feeling it? It’s not that they’re insensitive, it just gets old talking about it and listening to me talk about it.
As for those who don’t know me well, or only see certain sides of me, they don’t fully get just how much I am affected by my pain I am. Even the doctors don’t fully understand…with the exception of my pain doc and his NP who because of the fact they deal with my pain treatment and see me monthly, and have seen me on good, bad, and horrendous days. That’s one appointment I do not cancel even when I seriously do not feel up to going in. I will go in no matter how much pain I’m in because then they can see how much I am affected. Not that they have to see me at my worst to treat me but it makes it easier.
I can’t believe that a doctor would assume you’re better just because you’re doing something to help others. Don’t they understand about putting EVERYTHING on hold to do an activity that’s worth doing? Don’t they realize how much you’ll pay for that after? How can they NOT understand given that this is a constant theme for people with RAD? I don’t get it.
Hope you recover quickly from your day!
I believe very few people who don’t have this disease know how it really is, including docs. Family members who are attentive & become caregivers, they know more of course. Hoping to make more of the truth known of course! 🙂
Oh yes, I can prop myself up for a few hours and I pay for it for days (sometimes weeks) afterwards. People tell me that I look better or so well or whatever makes them feel better. Very few people realise that every second of every day there is pain in multiple joints. My rheum keeps asking if I am working again yet. I keep trying to explain that my joints get very sore, very quickly when I am active. That I mostly push through it until I absolutely can’t walk, her response is that I’m not doing enough exercise – apparently that’s the cause of the relentless fatigue too. People who don’t live this just can’t wrap their heads around being in this much pain all of the time, they can’t grasp the fact that this is probably as good as it gets for me and there is nothing more that medicine can do. After nearly seven years, my brain is so accustomed to pain that I wince when I see people doing very active exercise etc because to me it looks like it must hurt – then I realise that it doesn’t hurt them at all. You can’t win, if you’re resting because of the pain then you’re not doing enough, if you’re pushing past it, you must be ok. Thank goodness I have close friends and family who get it and really see past my public face of being ok.
Ali, pushing as far as possible is very familiar. Indeed it must be impossible to wrap one’s head around something so extreme and yet invisible. Only a bath and some rest can get the joints to calm down again.
HA! Just a funny to lighten the mood. My husband just hates watching football with me. Everytime they do a slow-mo replay I’m right in there with the OOOH-OW. Yikes that makes me hurt! The animation I do I guess is quite funny but if they only knew how much I can relate. Watching young girls in 4 inch stelletos does the same thing for me.
“You can’t win, if you’re resting because of the pain then you’re not doing enough, if you’re pushing past it, you must be ok.” Truer words were never spoken. I am sooo sick and tired of doctors telling me to exercise. I do exercise! If I push myself, I hurt myself. If I do what I can, they don’t think I am exercising. I don’t really have anyone who truly gets it, so I am happy you do. Cherish the few.
I get it Jenn. And sometimes I feel I’m the only one on earth too.
There are about 5 exercise posts here over about 3 yrs time, judiciously written, backed up by science, yet every single time someone gets snarky about how I’m actually being lazy or doing patients a disservice by not holding the party line. I wish they ‘d just read what I ACTUALLY wrote…
The public face. I have one of those. plaster on the smile and pretend. some days I can’t.
I’ve had RA for over 30 years. I don’t talk much about it, because I don’t want to sound like I’m just complaining. A good friend whom I hadn’t seen in a couple of years, asked me how I was doing. I said “Not very well”. She acted surprised and said that my hands didn’t look any worse since she had seen me last. I just smiled and showed her how I can no longer close my hands and the first two fingers on my right hand are completely turned over the other two. I don’t like showing people how deformed I am just to prove I still have RA.
My husband keeps telling me to exercise and walk. Resting will only make it worse. I do not sleep well due to the constant pain. It takes me twice as long to do things like laundry. It is frustrating that he doesnt understand I am newly on disability from work my doctor feels it is too much for me and my husband supports his decision. Sometimes family can make u crazy!
I am still “new” to RAD, only just over a year, it’s seems so strange that we all learn these same living with RA lessons quick. I too find myself preparing and resting through out events in my life. Sometimes (ok now just about everytime) I even schedule my Walmart trip so not to over-do it. I really have tried to explain to family and friends that this has nothing to do with my “controlling” every aspect of life ( we all know that we have no control over RA ) but it is now a means of survival for me. I now forward and post alot of things from RA Warrior and hand out copies of The Spoons article that I found refered to on another one of your pages. It really does help my “living” with RA. Thank you Kelly for all you do. May you be blessed for the gift of understanding that you bring to not only the RA patients but to that to the rest of world as well!
Kelly, Thank you for all that you do to educate and spread awareness. Thank you for being our voice. It makes a difference; it really does. I’ll bet you pay for your recent extracurricular activities in Tampa, for the next few days/weeks. Oh and Happy Birthday!!
I am usually very verbal. Other than being underweight, I really don’t look sick. Fashion and beauty have always been “my thing” and I am sure it will be the last to go. My “eye” for fashion was there LONG before RAD came into my life. That goes against me in so many ways, covering up my sallow complexion with cosmetics, blush provides color where there really is none. I often hear “You look fabulous” and I am sure it raises doubts about the severity of my illness. My RAD mostly affects the tendons, and leaves me feeling as though I am being “drawn and quartered”. There is usually obvious redness following the tendon and I point that out, as well as the swelling. As a nurse, I am always looking for a way to relieve, ease, or overcome the obstacles. I am a splinting guru from years of working in emergency medicine. I problem solve my flares, and develop my splinting based on what pain and limitations that I have at the time. The other night at work, my left hand suddenly began hurting right in the palm, and my ring finger mobility was limited and would “snap” (assuming trigger finger). The pain was so severe that when I looked at my hand, I expected to see signs of stigmata. It gets that severe. There was no nail hole in my palm, and there was no blood much to my amazement.
I still work full time, and I still do all that I can physically do, but it’s a huge effort. It sometimes gets the best of me, and I can’t count the number of times RAD has brought me to my knees due to pain or frustration of not easily being able to accomplish the things I feel I should. More often than that, I have been brought to my knees by unkindness of others. People who have “cashed in” on my illness to benefit themselves. In the work place, I’ve had colleagues questioning if I was even physically capable of continuing my employment, I have heard sighs of frustration from those close to me for years and deafening silence when it comes to talking about my disease. All along, my doctor feels I am doing well. Really? Compared to what?
This weekend we reached a milestone. My disease activity has been somewhat milder this year than last. I have had pain daily, had the same limitations, but last year was definitely worse. I have really worked hard this year to maintain a positive attitude and push past the ignorance of others, worked hard to achieve a schedule that I could work with. I feel accomplished. This weekend was physically bad for me. The tendons in my dominant arm were tight like guitar strings, red path and swelling obvious. I could neither straighten my arm or rotate the wrist even slightly without gasping in pain. Additionally, my right hip flexor and extensor tendons were painful and caused a limp. I looked like Quasimoto walking around. I was supposed to go to my boyfriend’s daughter bridal shower. I’ve been looking forward to this for some time. Though I wanted to go, all I could think of was having to explain my posture, my sling (that did not match my fabulous outfit), and the erratic breathing patterns when a muscle spasm took hold. I could have made it. I could have withstood the pain, I could have gone to the exhausting efforts to shower and get ready for the event. I could have done it. This was a day to celebrate the “bride to be”. Someone attending who is not “up to par” detracts from a party atmosphere, detracts attention, and frankly is a buzz kill. I was concerned that there would be hurt feelings because I did not attend. I overheard her dad explaining to her that I could not make it. His explanation brought tears to my eyes. He explained that my RAD was bad that day. He said “she misses out on a lot of fun stuff because of her disease. I know she really wants to be there.” It meant so much to me to hear that. Today, I am feeling better, but not 100%; maybe somewhere around 65%. Even so, seeing the beginning of understanding, gives me the ummph to carry on. Understanding is vital.
I am newly diagnosed with RAD. Your post reminds me of myself, with my flair for makeup and clothing. I can make myself look good regardless of how I feel, and I have noticed that response about how I look like I’m doing ok . . .
It isn’t that I want everyone to know just how bad I feel, but that I wish their understanding was not based so much upon appearances. This disease has already taught me so much; I no longer think a person’s outside is necessarily indicative of their insides.
I agree Linda. It shows us that we may have no idea what someone is dealing with.
Kelly, I applaud all you get done!! Besides physical pain, I know it is hard to just think sometimes and process information. So I also congratulate you on your intellectual stamina! As far as physical, so you can get more “bang for your buck”, I wonder if using a wheelchair would help conserve vital energy so you had more left over ,for other demands… Just a thought and entirely up to you,as you know your body best. I just thought that your speaking duties are often in larger venues, where you have said you have had to walk alot, or even use a wheelchair for family outings. I can remember going to the zoo,with the help of a wheelchair, to enable me to spend that precious time with my son and husband….
“Usually, the disability concerns me more than the pain.” So true!!
Loved the article!!
Thank you so much for writing this. I can relate to you so much in regards to being told you’re doing “better” when you’re completing the things that make your life worthwhile, often at great physical cost. I’m a 19 year old college student, and I’ve had almost constant RA-type pain for 5 years (Officially diagnosed only as “seronegative undifferentiated spondylosis”, after battling tooth-and-nail for 4 years trying to find someone who believed there was some actual problem causing my severe pain and structural abnormalities) and I was told by my rheumatologist’s office last week that they thought it was great that my RA’s “controlled” enough for me to be able to postpone an appointment so that it wouldn’t conflict with my class schedule. Sometimes I feel like doctors expect the RA to be the sole focus of your life, and if you’re able to do other things, it must mean the RA is doing better. Heck no! It just means we’re not letting it suck out every last ounce of the quality of our lives.
What is wrong with your doctor? Because, Kelly, I could SEE it. I had tears in my eyes watching you speak and looking at the pictures, because I could see it as clear as day. Maybe he doesn’t recognize the signs of pain? Maybe we should take some of your pictures and draw red circles and explain it. Like I could see from the way you were sitting at one point that you were in that position that’s, I guess, a “survival position,” slightly leaned over, and moving ever so gently. Or your jaws. Or the way you held your hands in your lap.
All these things are the reason I admire you so much. I cannot imagine doing what you do, and the analogy of labor is so good. And memories of sitting on floors is one of the things that keeps me home.
Anyway, happy birthday! And, Katie Beth and Roo, e-hugs to you two!
Things are obvious to us that are not to those who do not understand it. But this is confusing Trill. Were you in Tampa?
I always have people say to me “how much better I must be feeling because I am not complaining.” I’ve told them that the paid is “ever present” and although I do not feel better, I’ve just chosen to move onward and keep my thoughts and “pain” to myself.
No one really cares, I’ve found. People ask how you are…but many are just being kind and don’t really understand nor care to be involved in your disease.
Sad.
It sounds as if you and I were diagnosed with RA about the same time. You also spoke from my heart and head when you wrote this. I find myself smiling and ‘pressing on’because I feel that’s what’s expected of me as a wife and a Mother, when all I REALLY want to do is cry and say to them “I’m in pain, can you PLEASE get your own dinner tonight, can you please help me with the housework because it kills my feet and ankles to walk up and down the steps today, especially with a load of laundry on my hip.”
Maybe I bring this on myself because I’m “so tough”, and they’re not mind readers…I dunno. But when you see me shuffling my feet because it hurts to actually take steps or when you see that I can’t even use a can opener, or not even able to hold a spoon properly while stirring your homemade soup… maybe just maybe could you put two and two together and tell yourself that “she’s hurting today and I should step up to the plate and help her like she did me when I wasn’t feeling well.” Yes, it’s now become VERY difficult for me to tolerate listening to anyone’s aches and pains and doctor them, while I suffer every single day. Far be it from me to complain though…
I’m sorry I hijacked your page, but I DO feel better now! ha!
Happy Birthday Kelly! Thank you for everything you do for our community. It takes alot of time, effort and energy to do what you do.
While I understand that your post was serious, I had to chuckle a bit at the line about not mentioning the pain unless a dozen joints were hurting at once. I, too, feel that way much of the time. We definitely get used to chronic pain. It becomes a part of our lives.
chuckling is always welcome. and humor is almost always intended. so YAY for any smile even if it’s a scoff or a wry smile.
Hi Kelly – I don’t have RA, but I’ve been dealing with severe clinical depression since I was a child. Because I grew up with it, my armor is thick and flexible and I barely feel it. I can go about my day and nobody knows what’s going on beneath — but it costs me tremendously to put on that performance. I’m in therapy and have been on meds for 20 years, and hope someday to be free of it.
I write all this because although I don’t face your particular challenges, you are such an inspiration to me. Thank you, from the bottom of my heart.
Kelly – I know it takes a lot of effort and sacrifice for you to do all the things you do. I just want to say thank you for choosing to hold on to the “advocacy ball” on behalf of all of the rest of us, even when that means all of the other balls have to drop. I know you have to choose your activities wisely, and your character and servant’s heart shine through your willingness to constantly do things for others — whether it’s family, friends or the patient community at large. I hope you have a restful and enjoyable birthday today!
Why do all the pharmacuetical have to run so many commercials about how much pain we’re in the deformities that occurring. I watch TV as an escape until the multiple commercial come on. I realize we are trying to get more exposure but why does it have to keep reminding me about something I’d just rather forget about?
Kelly, agreed. Belinda, yours sounds somewhat similar to mine.
Kel, baths (and soap on lady’s privates parts) are no-no’s for anyone suffering with bladder infections.
I have not described my personal habits and anything I can think of responding is tmi. I do suspect this 6-month-long infection in someone who has never been prone to them is likely connected with the Rituxan infusion which immediately preceded it. I do not believe I have done anything to bring this on myself, but I guess when one mentions one’s own health on a blog, others may feel it is open to their speculation.
Wasn’t saying anything about it being brought on by self vs medication, nor did I think that was implied either. Just best to avoid baths (even if joints want a hot bath) and soap under those conditions.
Hi I was just diagnosed with RA 3 weeks ago… Ironically I found this site while browsing thru a magazine at the EYE Doctors office! I really haven’t figured out how to find my way around the site so any help would be appreciated. I see certain headline and then when I go back into the site I can not find them…
Hi Maria. Welcome to the site. I realize it’s very large and many pages to navigate. You can use several tools to find things like the 2 menus at the top of the page. Is there something specific I can help you find?
Here are some more suggestions from the About Page:
Here are some great ways to find what you are looking for:
Search box at top of the page.
All posts are carefully tagged – so scroll through the Tags list for your topic.
Further down, the Archives list every post on the blog. Just click on the black arrows to see all the titles.