inmyrheum

BD (before I was diagnosed with RA), I went to see a few different orthopedic surgeons. After tests, manipulation on the table (hey that really hurts!) and x-rays, they decided I needed a new hip. I had been limping for years. So this wasn’t surprising. The fact that I was 45 and needed a full hip replacement was surprising. I chalked it up to “Well, at 40 your whole body just starts falling apart.” I mean people say that. I’d never been 40 before, but I’d never had pain traveling through my body before either. So, it made sense to me. I figured one major surgery and I’ll be able to walk again after rehab. So short term pain for long term gain. I can do that.

We scheduled the surgery when my kids could be with their father. The surgery went well. The first few weeks of rehab went outstandingly well. Then my RA, still unknown to me or my surgeon, reared its ugly head. My body hurt all over. My joints were in full protest. I couldn’t straighten my knees or my elbows fully. The pain from the surgery was the least of my problems. The therapist started doing manipulations to for the joints to open. I would sit in my car and cry in pain for at least half an hour after each session.

I went back to the surgeon and told him what was happening. He took more x-rays. He shook his head and met my eyes. “You need your other hip and both knees replaced. You’re much too young to have this kind of damage. I see 80-year-olds who need one joint replaced. Something is going very wrong. I’m sending you to a specialist who can help us figure out what it is.”

This is very scary to hear. Then my search for the right rheumatologist was so frustrating. In addition to being a single Mom, recovering from major surgery, working and being a PhD student, I was trying to manage a debilitating disease. I wonder sometimes how I made it through all of this. Friends and faith I guess…. and I’m so grateful for every single one of those friends.

Once I found the right rheumatologist (Dr. Best!), got on the right medications, finished all my surgeries and rehabs, I am happy to say, I found a lot of ways to survive RA. You will, too. Dr. Best Rheumatologist helped me a lot. Not only by going through treatment after treatment until we found one that worked well, but by laughing with me, insisting that I slow down and care for myself more, taking me seriously, and giving me an antidepressant when all the changes were just more than I felt like I could handle. He and his wonderful nurse were there whenever I needed them. That’s the kind of team to be a part of!

the FIRST time I heard the words Rheumatoid Arthritis from a doctor

So he was a new doctor to me. My friend and neighbor recommended him highly. He seemed nice, but a bit casual. He chatted with me about my history. At this point I’d been limping for years. I was at the point where my daily functioning was being affected by the pain. It was so I bad I had trouble sleeping. It would wake me up (Hey, pain, it’s 3:30 am and I have to get the kids up at 6. Could you go away now?). It was making work hard. The PT was treating me at least twice a day just so I could get through the day. So the doctor, this rheumatologist, who seems nice enough says “Can I tell you a dirty joke?” (UH what?!) I should have left then. I should have yelled at him. I should have turned him in to the AMA. But I just said “I guess so.” I was completely shocked and didn’t know what to say. (Brain, is that really all you could come up with? “I guess so”? Gurrrrllllllll, run!) So he proceeded to tell me a slightly dirty joke. As I sat there wondering just what kind of doctor this guy was, he said “You have rheumatoid arthritis.” (Wait, no blood test, no x-rays, no exam….) I asked how he could know that. I was told that he had many years of experience and he’d seen it so much that he just knew. He suggested I start taking a chemo drug called methotrexate. This is a very low dose of chemo. I left and I never went back.

the SECOND time I heard the words Rheumatoid Arthritis from a doctor

Several years later, my new GP sent me to a specialist. This rheumatologist also came highly recommended. A doctor I trusted, who knew me, sent me to him. He was generally known to be a good doctor and a really great guy. So, I went in and talked to him. He asked how long I’d had symptoms. I said well, about 6 years now. And then Dr. Great Guy turned into Dr. Nasty. He berated me for waiting so long. He told me I was overweight (like I didn’t already know that). He said I see you’re single, divorced, right? Right. He replied by telling me I clearly made horrible life decisions. He said I was much too smart to act so stupid. I started crying, which frustrated Dr. Nasty to no end. He told me to “turn off the water works.” He said this was really all my fault. Then he said “I don’t want you as a patient. Find someone else.” I left. I went and sat in the hallway and called my sister. I continued crying. I looked up and here came Dr. Nasty down the hallway. He saw me and smirked, shaking his head. I limped to my car in complete disbelief.

Finding the RIGHT doctor (third time’s a charm)

I asked around for another recommendation. This time the doctor I went to see was professional, kind, and up to date on all the research. I told him about Dr. Nasty. He was shocked. He said “You can’t give yourself RA. So clearly HE makes bad life choices.” He said Dr. Nasty was a good doctor and usually a great guy. (SIGH) He said he’d like to see me as a patient, and we could work as a team to find the right drugs. That was the beginning of a great doctor-patient relationship. He’s still my favorite doctor I’ve ever seen. If I hadn’t moved away, I’d still be going to him. No off-color comments or jokes. No berating me. Only compassion, caring and a professional approach. He was thoughtful when things didn’t go right, slow and steady analysis. Just my kind of doc!

So don’t get frustrated if you’re looking for a doctor and the one you find isn’t a good fit. Just keep looking. Find one you can work with as a team. You may have to try a few. I hope they are nothing like the first two I saw, and everything like the one I found.

I am blessed to have friends who offer to shop for me. I love them. It still makes me feel guilty that I need people to shop for me. So, to assuage my guilt, let’s look at what it takes to go buy groceries.

1. Need to shower. This means getting upright, which often requires a pep talk. Let’s go. You can do this. It’s just getting up. You used to do it without even thinking about it. Stand up. Come on. That’s it. Good. NO, don’t sit back down. Good. Okay. Step 1 is complete.

2. Walk to shower. If the thought of this made me sit back down, we must go back to repeat Step 1. If not, give myself a little cheer, “yay for walking upright!”

3. Look in bathroom mirror to determine if I really need to wash my hair. Yup. ICK. Definitely need to wash my hair. Hey, while we’re on the topic, when’s the last time you cut or styled that mop?

4. Get into shower. Oh look there’s my shower chair. Best. Invention. Ever. Wait, am I really so pathetic that I can’t even stand for the time it takes me to shower? Good Lord, Woman, you are 50 not 90! I bet a lot of 90-year-olds don’t even sit in their showers. Shut up. I am sitting so I will have the energy to get through shopping. Sit. Wash. Feel pretty good.

5. I love my towel. It’s big. I mean really big. It’s soft. AND it’s purple. Mmmmm, it feels so good to be clean. Why do I make such a big deal about how much energy it takes to shower?

6. Walk back to bedroom and sit down. Figure out what is clean to wear.

7. Dry hair vigorously with towel. Less vigorously. Man… I feel… tired.

8. Go to sleep.

9. Wake up. WHAT TIME IS IT? I was supposed to go to the store! What is wrong with me? I can’t even get to the store to buy groceries???? Oh yeah, I’m sick.

10. Slowly get dressed. Bending over is usually painful. So do this with as little bending as possible. Do it seated, because if not, you may need another nap.

11. Walk downstairs and marvel at how messy your house is. Don’t those kids ever clean?

12. Do not stop to marvel or you may sit down, further delaying your trip to the store. Keep walking directly to the car. Do not pass go. Do not collect $200.

13. Park as close as possible (thank you handicapped parking). Get an electric cart because this will take more than 5 minutes.

14. Shop… talk to friends who are also shopping, unless it’s 2 AM and you are shopping because you didn’t wake up in time (see Step 9).

15. Load groceries into car.

16. Sit in car and marvel that you are now completely exhausted, again.

17. Drive home and park the car.

18. Honk and beg children to unload the car and put away the groceries, which they almost always do.

19. Go take a nap.

I remember when going to the store was done without thought… just hey, stop at the store and pick up a few groceries. That was nice, but that was life BD (before diagnosis).

Let’s not even talk about making dinner…

Today’s post isn’t really about RD… just life.When I was a kid, it became a family joke that my report cards always said, “Lisa likes to socialize. She is not reaching her potential as a student.”

Now, I always got good grades. Maybe not straight A’s, but good grades just the same. I was on honor roll in high school and in college. I wasn’t National Honor Society, but I did just fine. So why did my teachers always write that? I suppose they wanted me to stop talking. But is that a realistic expectation of a smart, outgoing extrovert? I don’t know, but they are words that have haunted my existence.

I went to college, got 2 degrees and was working on a PhD when RD struck me down. I have had bosses as a professional, who I think felt just as those teachers did, “not working up to her potential.” I had a husband for 18 years who definitely had no problem letting me know in very unloving ways that he agreed with those teachers. I have told myself over and over again that I agree with those teachers. Now RD has me mostly home bound and often in my bed or recliner, exhausted most days and doing less than I ever have before. The words still hang there. Am I less than I should be? Will I die never having “reached my potential?”

I am pretty sure many of my friends and family agree with those teachers. They don’t understand the pain, the fatigue, the overwhelm I feel just doing the bit that I do every day. They ask me why I cancel plans, don’t answer the phone, don’t socialize any more. The girl my teachers wanted to stop talking, has finally stopped, but now that isn’t a good thing either. They have been overheard being very critical and judgmental. No job, no real income… so much potential just wasted. Believe me, it isn’t anything I haven’t thought myself.

Who can judge your potential? Only I know what I am capable of. My doctor tells me I push too hard and under-report my pain. My friends say, “Just push yourself a bit.” I go out, sometimes when I know I really shouldn’t (but the wedding was so much fun), and smile through my pain. My friends say “You don’t look sick; you look great.” Thanks but I feel like a bus hit me. Should I just start looking like that? My kids have seen me hit the wall, and melt into a crying, suffering pool of pain. They have seen me sleep 20 hours straight after I push much too hard (but I would do it all again for the bar mitzvah or to visit my Mom). I become very cranky, and probably hard to live with (another area where I have such potential). I pushed myself to work. My boss would say “Do you have to look like you are fighting to drag yourself in here?” Ummm, I am; can’t you just appreciate that? She wanted to fire me, but my professor knew. “I know you,” he said. “I know how hard you fight. I know you must be in so much pain.” That was our last conversation, when I told him I had to stop. Why don’t my family and friends know that? They have known me so much better and longer than he.

I am not feeling sorry for myself. This is the reality I live. It confuses me, as smart as I may be. I do what I can. Sometimes I do much more than I can. You see, in my world, I have been an overachiever. I have done many things, had many jobs, gave all of myself to my marriage. I wanted to be perfect. It took counseling for me to realize I don’t expect that from anyone else, only myself. It sometimes still hurts me when I have to face the fact that I am not now, neither have I ever been, nor will I ever be perfect. I am just me, human and fallible, hurt by the judgment of others, hurt by my own harsh judgment… just me. That’s who I am.

Words have a way of sticking… doesn’t live up to her potential. Even when they may not be true. So use your words gently. Try to be less judgmental, even of yourself. Be kind. Above all, just be kind. You see, that person may fighting demons you know nothing about. Putting on a smile because that’s all they know how to do.

Lately I have not felt that I have had anything to say that would be of interest to others. I have not posted for quite some time. When I came today and saw comments that were so kind, it got me thinking. I have told my friends and myself that we never can really know whose lives we have touched or how. We go around and live our lives, make our own decisions, but everything is like a pebble in the water, our ripples never ending. Somehow though, I seem to forget that… I’ll try to give myself more credit. Thank you for reminding me.

When I was young (many moons ago), there was a popular quotation that went like this: “Some people come into our lives and quickly go. Some people move our souls to dance. They awaken us to a new understanding with the passing whisper of their wisdom. Some people make the sky more beautiful to gaze upon. They stay in our lives for awhile, leave footprints on our hearts, and we are never, ever the same.” It’s by Flavia Weedn, a person I’ve never met and whose name sounds straight out of Harry Potter to me. Over the years, I’ve seen the truth of these words.

I am blessed to live in a community that extends me care in many large and small ways. I have people in my life that have helped me through so much. Old friends and new, who often have no idea how much their presence has influenced me. I have teachers, co-workers (before I got sick) and acquaintances who have all changed me.

I catch myself sometimes, feeling sorry for myself or doubting myself. I think how lucky my married friends are to have someone who really cares how their day has gone or if the kids remembered Mother’s Day (they are only kids and even though I reminded them, I refuse to take it personally that they still forgot, and I will keep repeating that until I believe it). I wonder why G-d has not brought me that kind of love. Until I remember, I am surrounded by love. Every person who has said or thought kind things about me, every person who made or bought me a meal, every person who has said a prayer for me… this IS that kind of love, even though it isn’t embodied in someone to sleep next to or hold my hand (gently because those joints are so sore all the time). My kids were created in love and truly were answers to my prayers, even if they can’t seem to remember one day a year (okay, two, I also demand attention on my birthday).

RA generally sucks, but I can say it has given me blessings, too. I have time to notice the sunrise (as I am awake from pain-somnia). I have time to smell the flowers, even if I can’t get on my knees any more to plant them. I have compassion for the pain of others, emotional or physical. All pain is hard. Every day I laugh and find things to smile about. Life is good. Life is special.

Thanks for coming and reading what I have to say. I will try to be more aware that each word touches others and leaves a tiny footprint behind.

It’s raining here. It’s been raining here for 2 days. I love the rain, the sound it makes, the smell of it, the way it cleans the earth and gives us water to drink. Fill those aquifers! I love thunder and lightning. What I don’t love is the aches the rain brings with it. My hands and feet feel like someone sat on them all night while I was sleeping. My knees are like that squeaky door in the horror movies (the one everyone yells for the girl not to walk through, but she does anyway). My shoulders would really prefer to be immobile. So believe me I am FULLY aware of rheumatoid disease today. Thank you G-d for man-made hips, which never ache!

How aware are you? Here are some facts put together by the Rheumatoid Disease Foundation.

* RD is not “just arthritis” (as if that wouldn’t be bad enough!), but arthritis is one symptom for people with RD.

*  Other symptoms can come and go (called flaring) or be constant. They include fatigue, joint pain, stiffness, swelling and fevers, among many others.

* RD is a progressive immune system disorder. I tell people that I have an over-achiever immune system. It gets bored easily and attacks my body.  My doctor says RD is in the blood and attacks anything the blood touches… so yeah, that’s joints, cartilage, organs, everything.

* Almost 2/3 of patients have 20% or less response to treatment. Many people must have surgeries to repair damage. There is no cure.

* About 1% of the population has RD, but arthritis conditions, including RD, are the number one cause of disability in America.

I still have kids to raise, meals to cook, commitments (although I always know that a flare, a fever or exhaustion can waylay any commitment I make), things to do. I have to shop and go to school functions. My life didn’t stop with RD, but it sure feels that way sometimes. I still want to have fun, laugh, travel, spend time doing all the things I’ve always loved. Be aware of RD, but remember those who suffer from it are still the same people they were before it hit. I’m still me, just at a much slower pace.

Going to cook and eat and watch the Super Bowl today. Even with the pain.

 

How about if we start out with an introduction (always a good beginning, am I right?). I’m Lisa. My life as a Midwestern girl and then woman, wife and then single Mom, sports car owner to crossover mini-van driver has been great, but maybe not so unique.

BD (or before diagnosis) I had two small boys, a job and I was pursuing my PhD. I also had a terrible limp, which caused a lot of pain. I went to see a couple of different doctors, had some treatments that did no good (they were excellent at lightening my wallet though), before the doctors decided I needed a hip replacement. All that limping had ruined my joint. A new hip, and I’d be as good as new! I was 46 and getting full joint replacement.

Surgery went well (I had a great surgeon) and recovery started fabulously. Then, about 4 weeks in, everything started to hurt. My new hip worked well, but everything else was breaking down. Around 5 weeks in, my knees became contracted (I couldn’t straighten them out any more, and I couldn’t bend them all the way either). I couldn’t straighten out my elbows all the way. The pain in my body was worse than before the surgery. (I know now that I was in a full rheumatoid flare, but back then I had no idea what was happening.) My surgeon was stumped.

He did more x-rays. So much joint damage in a lady so young, he said as he shook his head. He sent me to a rheumatologist. I asked my friends and found one who came with a good reputation. We’ll call him Dr. Jerkyl. I sat on his exam room table and waited for nearly an hour (at a 9:30 AM appointment). I told him about how I couldn’t move very well, had constant pain, couldn’t go back to work or school. I told him about being a single Mom, in need of income. I should have become suspicious when he asked why I divorced my ex, but being a trusting sort, I simply answered that he was emotionally and verbally abusive. Dr. Jerkyl crossed his arms and said, “Sounds to me like you make terrible life choices.” He then went on to berate me for waiting so long to see a rheumatologist. After I explained that I had only just been referred to one, he told me I was much too smart not to know that I needed to see one with or without a referral. He told me it was my own fault I had so much pain and rheumatoid disease. He was mean. I started to cry. He actually smirked and asked if I was crying so he’d feel sorry for me. He carried on berating me for my “bad choices.” I told him I couldn’t change the past. I was here now and wanted to begin from that day to learn what I had and what to do for it. Dr. Jerkyl then informed me that he did not want me for a patient. He handed me 3 names of other rheumatologists and asked me to leave. I couldn’t believe what had just happened. A doctor my friends respected and recommended had just humiliated and blamed me for everything. I sat on a bench near the bathroom in the hall outside his office and called my sister. I started crying again. Dr. Jerkyl walked by to use the restroom and actually laughed when he saw me. I fled to my car.

That’s how I found out that I had rheumatoid disease, but I still wasn’t sure what it was or what to do about it. Dr. Jerkyl had given me a prescription for an anti-inflammatory, guilt and a lot of fear. Luckily, he also gave me the name of another doctor, lets call him Dr. Dreamy, not because he is handsome (he’s nice looking, but not Patrick Dempsey… then again who is?), but because he’s a wonderful rheumatologist with a kind bedside manner. When I told him what happened, he laughed and said “I hope that guy has severe consequences for every bad life decision he has ever made. Also, you cannot give yourself rheumatoid arthritis.” I knew then that I had a good doctor and an ally.

Dr. Dreamy started me on an aggressive regimen of drugs. I had now been out of work for 8 months from a surgery with a 6-8 week recovery time. I tried to go back, but the doctor appointments, side-effects from the medications and weakened immune system kept getting in the way. After a couple of months back, it was clear to everyone, this wasn’t working out. I talked to Dr. Dreamy, who responded “Why haven’t you applied for disability yet?” Welllllll…. I didn’t know I was that bad.

My GP, Dr. Dreamy and my surgeon agreed. I needed to stop working. Great, I thought, are you going to support me? So while I applied for federal disability (with amazing help from Jewish Family Services), we lived on child support, charity, generosity from friends, a wing and a prayer. It was rough. It took about 8 months from when I quit my job to when the application was approved. I have been on disability now for 3 years. (My ex tells me I am a succubus abusing the teat of a welfare country… seriously, he said that.)

I’ve learned a lot about my disease. The most helpful place on the web was RAWarrior.com. Kelly is fabulous. Whether you are a patient or love one, she has scads of information you need. I’ve learned a lot about my limitations. I’ve learned a lot about joint replacement (I have a fully bionic pelvis now and am going for bionic knees soon). And I’ve learned that laughter and joy are the best options.

Welcome to my rheum. Tell me about you if you want in the comments. All I ask is no profanity or spamming. I’ll delete any comments of this nature.