Archive for category Doctors
“I just don’t know how much pain I’m expected to endure,” I confided to my friend.
And so, I had to admit to myself that I’ve been living with more pain, more morning stiffness, more burning sensations in my joints waking me up at night than I was willing to tolerate.
Because the pain is scary. It makes me think of my X-rays when I first got diagnosed, showing the pain that I had ignored had turned into bone erosions – permanent damage.
And because the pain is exhausting. Emotionally and physically exhausting. Invading my thoughts throughout the day. Throbbing right wrist, stiff left pinky, swollen left ankle, burning right elbow — Oh, was I supposed to be paying attention in this meeting? Invading my sleep at night. Invading my optimism that I had this disease under control.
And then I had to admit it to my rheumatologist. And then I heard him asking if I wanted to get on Prednisone. No. Methotrexate? I’d rather not….. I like a drink. I like to know if I get pregnant I won’t have to abort the child. I like not feeling nauseous one day a week and shedding copious amounts of hair. What else is there?
So now, Plaquenil. A malaria medication, which is a DMARD used to treat lupus and rheumatoid disease (though the printed information the pharmacist gave me states “they don’t know why it works to treat these diseases” — encouraging, right?).
Following the appointment came a struggle. Reading the side effects, wondering if more drugs were the right course, determining to also try lifestyle and diet changes.
Wondering if this was somehow because of something I could have prevented. Something I did. Eating the wrong thing? Stressing about my breakup and work too much? What if I could meditate and eat more kale? And cut out nightshade vegetables and gluten and dairy and sugar and caffeine and never drink again and basically become a monk? Would this disease leave me alone then?
And then depression. And acceptance. And sadness.
Because I’m back here again. Wondering if this treatment will work. Remembering that this disease is labeled chronic and I’m probably stuck with it for the rest of my life. Trying to remember how to feel optimistic and hopeful.
And two pills a day. And one shot a week. And less gluten, dairy, sugar, nightshade veggies, caffeine and alcohol. And more acupuncture.
And maybe starting to feel better. Maybe remembering how to have hope.
Love to all of you dealing with the taxing ups and downs of autoimmune diseases. I would not wish this on anyone, but it does force you to slow down, to be aware of your body, to appreciate the moments that are pain free and the moments where you surprise yourself with what you can do and what you can bear.
If anyone has experience with Plaquenil – good or bad, I’d love to hear it!
Ah, late December. A time of beautiful lights, giving, and the great health insurance scramble.
As co-founder of my company, I’m lucky enough to have a huge impact on choosing the health insurance we provide. One of the deciding factors for me is being able to get my Rheumatoid Arthritis drugs at a low co-pay. Through United Healthcare, it’s been $10 per month for methotrexate, $10 per month for folic acid, and $30 per month for Enbrel.
In other words, $50 a month for drugs. A reasonable-enough price to pay for my health. It is the number one reason we decided to keep our UHC plan for 2015.
So shock me, shock me, shock me (Any Empire Records fans? Read on, there’s a gif for you below.) when I get a letter saying that beginning January 1, 2015, Enbrel will be considered a “Tier 4” drug and will not be eligible for the Enbrel Assistance program. After some digging, I found out that this means it’s going up to $250 per month with no opportunity to enroll in any payment assistance programs Enbrel provides.
What? Merry Christmas to you too, United Healthcare.
Their advice? Try another drug.
That’s all good and fine. They’re willing to cover Humira or Cimzia, but I’m feeling pretty violated. I know violated may seem like a strong word for this situation, but that’s how it’s feeling. I’m being forced to put an unknown drug into my body because my healthcare has made an arbitrary change to their coverage. Enbrel is a known quantity for me. It’s effective in treating my RA, side effects are pretty minimal for me, and my body is used to it. Humira and Cimzia are not.
Not to mention, my rheumatologist claims that though the risk of switching is “probably pretty minimal”, there is a risk that I could lose the efficacy of Enbrel if I ever need it again. Joy!
So, have any of you RA folks made the change from Enbrel to Humira or Cimzia? How did it go? Are any of you on Humira or Cimzia? How did you like it?
Thanks for all your input and Happy Holidays to you all (in the non-grinchy, healthcare-trying-to-screw-you way, of course!)
Rude Awakening posted some great answers to the “30 Things You May Not Know About My Invisible Illness” questionaire in honor of Invisible Illness week: Invisible Illness Week: 30 Things You May Not Know….
She also reminded me, it’s that time of the year again! My answers are below.
30 Things You May Not Know About My Invisible Illness
1. The illness I live with is: Rheumatoid Arthritis (plus Raynaud’s Phenomenon and Chilblains)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: I noticed what I now believe were RA symptoms as far back as 2009. I’ve had Raynaud’s since at least age 14, though possibly much longer. Chilblains began in 2012.
4. The biggest adjustment I’ve had to make is: Slowing down more often to give my body a break.
5. Most people assume: I’m fine now that I’ve been to the doctor, because I’ve gained weight back and look healthy. They don’t realize that I’m treating symptoms that are chronic and occasionally flare even with treatment – I haven’t “cured” my disease.
6. The hardest part about mornings is: This absolutely depends on the day! Some days mornings are the best, some I have so much fatigue and stiffness I don’t want to move.
7. My favorite medical TV show is: Scrubs!
8. A gadget I couldn’t live without is: Comfy flats and boots, a jar opener, and warm socks and gloves!
9. The hardest part about nights is: Some days it’s fatigue, some it’s pain, some it’s just knowing I have to get up the next morning, some are totally fine.
10. Each day I take 4-15 pills & vitamins.
11. Regarding alternative treatments I: I love acupuncture and find it helpful and relaxing. Would if I could get more massages! I watch my diet and have cut down on many inflammatory foods, including dairy and gluten. I incorporate anti-inflammatory food/supplements into my diet as much as possible: ginger, turmeric, cinnamon, omega 3s. Perhaps most importantly, I try to do something active most days. On rough days, it may just be a very short walk, on good days, it’s runs, swims, boot camps, dance or yoga.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, even though it can be frustrating. Some days I look and feel normal and am able to forget about RA. Those are the best. Plus, being a private person, I prefer being able to choose whether or not I want to share my illness with others. Its invisibility affords me that choice.
13. Regarding working and career: I’m an entrepreneur working on a tech start-up that I co-founded. This means I likely work harder under more stressful conditions than my health and doctor would like. It also means I’m able to work flexible hours that allow me to make my doctor’s appointments and work from home on bad days (even from bed sometimes!). I try to remember to take time to myself to rest and replenish and focus on being healthy.
14. People would be surprised to know: I agree with Rude Awakenings: “Fatigue is as debilitating as pain – some days more so. And I feel like a definition is needed here. Fatigue = flu-like symptoms, not simply being sleepy.” On days with bad fatigue I struggle to do anything, including just talking to the people I love.
15. The hardest thing to accept about my new reality has been: Relying on drugs to feel well and accepting my body’s limitations on rough days.
16. Something I never thought I could do with my illness that I did was: I agree with Rude Awakenings here too: “Talk about it so openly.” When I was first diagnosed, I didn’t think I’d be educating people on my illness or reaching out to strangers!
17. The commercials about my illness: All feature older adults, seemingly in their 60s. They perpetuate the myth that Rheumatoid Arthritis is the same as Osteoarthristis and mainly effects older populations.
18. Something I really miss doing since I was diagnosed is: Not having to wonder how an activity, meal, or drink will effect my RA or interact with my meds. Not having to plan my life and trips around bi-weekly medication, bi-monthly blood tests, and tri-monthly doctor appointments.
19. It was really hard to have to give up: Control over my body. Oh, and dairy, gluten, alcohol and heels (I still enjoy all four in moderation).
20. A new hobby I have taken up since my diagnosis is: Blogging!
21. If I could have one day of feeling normal again I would: Similar to last year – I would just go, go, go all day and night, not worrying about lack of sleep, stress on my body, any of that.
22. My illness has taught me: Celebrate the good days and all that my body does for me. Always be patient and kind to others – invisible illnesses are a good reminder that you really don’t know what others are struggling with!
23. Want to know a secret? One thing people say that gets under my skin is: Agree with Rude Awakening again, absolutely this: “When people equate their grandmother’s osteoarthritis (or their own!) in her wrist to my autoimmune disease.”
24. But I love it when people: Ask me how I’m doing even if I look fine and want to learn more. I also love when people share their own experiences with autoimmune diseases or offer to put me in touch with friends who also have RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have many. Here’s a kinda nerdy one: “We take what we can get, Champ, and we do our best with it.” – Cordelia Chase. Another one along the same vein: “Do what you can, where you are, with what you have.” – Teddy Roosevelt
26. When someone is diagnosed I’d like to tell them: It gets better. The pain will decrease when you find the right meds. The loneliness will start to dissipate when others with RA come out of the woodwork and you find online communities to connect with.
27. Something that has surprised me about living with an illness is: Most people, even those close to you, do not want to think or hear about your illness. Everyone prefers to think that all’s well.
28. The nicest thing someone did for me when I wasn’t feeling well was: My boyfriend does this well: we’ll order in and watch a movie, and he won’t let me entertain thoughts of guilt over all that I didn’t accomplish that day.
29. I’m involved with Invisible Illness Week because: I want to create more awareness and understanding of autoimmune diseases. There’s so much that is unknown, underfunded and misunderstood.
30. The fact that you read this list makes me feel: Grateful. Thank you for taking the time, and for your support of Invisible Illness Week!
It’s not a cure, but a better way to manage pain could certainly change the lives of millions of people.
Putting your life in someone else’s hands is one of the hardest things patients are asked to do. We have no choice but to place our faith in the abilities and opinions of other people.
Sure, we can mitigate risk and make ourselves feel better by doing loads of fear-inducing Google research or seeking a second opinion. But, in the end, you choose your doctor and you move forward.
I recently read an op-ed in the NY Times about the way we make decisions in the medical sphere. It brought up some interesting points. First, we tend to trust authority figures, including doctors, without question. This is especially true when we’re frightened and vulnerable. And who isn’t when dealing with a scary, life-altering diagnosis? This can be dangerous since as many as one in five diagnoses are wrong (according to the article, which didn’t quote the source).
What’s more, we tend toward optimism, filtering in only the information we want to hear. I believe this can be a highly beneficial strategy of coping. After all, optimism, even in the face of a dismal diagnosis, can keep you feeling strong and keep the depression that effects up to one-third of patients with chronic disease at bay. But there’s a risk to the optimism bias, which is that you may be ignoring potential lifestyle risks or bad news, leading to decisions that may hurt you in the long run.
So how do you keep a clear head and move forward confident in the abilities of your chosen doctor? Well, for one, you don’t put your blinders on simply because you made a choice. The treatment you’re on now may not be the one that will be best for you a year from now. New treatments come out and sometimes our bodies begin to reject past treatments. Only you, not your doctor, can be responsible for noticing the changes in your symptoms. You can listen to your gut about what’s working and you can follow research and bring new treatment ideas to the table.
There’s more you can do to remain confident in your treatment. You can always seek second opinions for big treatment changes. You can bring in another set of ears to appointments so that when your emotions are running high and you’re hearing not-so-great news, you have another person to interpret what the doctor said later.
When you’re doing all that, you have nothing left but your best option, your best guess, and faith in your doctor’s treatment. And a healthy dose of optimism, of course.
Well, my running and office life have once again been sidelined by my health. For the fourth time since getting my wisdom teeth out in June, I’m sitting at home, swollen, bored, exhausted, and on antibiotics and pain meds (oh, and off my RA drugs to let the antibiotics do their job).
The first time was being swollen for about a month after getting the teeth removed. The second two times were when blood started collecting in my right jaw – a hematoma or blood tumor. That happened twice, people! Each time involved making an incision in my gumline/inner cheek under local anesthesia, draining the blood, undergoing antibiotics, and giving it time and rest to make sure it healed.
I’ve been totally fine and hematoma/jaw swelling free for five blissful weeks.
Then, this last weekend I had subtle, sporadic pain in my left ear. I was busy having a blast at a wedding, so I ignored it. Sunday night, I had some pain in my lower left jaw. I noted it, but went to bed.
Then, Monday morning I woke up to one half chipmunk cheek. Whhhhhhyyyyyyy?????
Of course, the oral surgeon who I had been doing follow up care with was out of the office Monday, so I went to a new dentist who ruled out a tooth infection and put me on antibiotics.
I spoke to my marvelous rheumatology nurse at least four times, trying to determine if it could be related to Rheumatoid Arthritis. The short answer is, yes, it could, but it probably isn’t.
So Tuesday I went back to my oral surgeon. He ruled out a hematoma or an infection, but numbed me up, sliced in, drained the area, “smoothed” the bone, and added a “drain” in my gumline to prevent fluid from building in my jaw again. Fun stuff, let me tell you. Apparently, he believes my body was reacting to a stray bone fragment left over from getting my wisdom teeth removed. Great, so could this happen spontaneously for years??
Since Tuesday, I’ve been taking my antibiotics, managing the pain with Percocet and IBProfen, and WAITING for the swelling to go down so I can look and feel like myself again. I’m still waiting.
I’m going in to see my oral surgeon tomorrow to hopefully get the drain out and get more answers. In the meantime, cabin fever is setting in because I’m supposed to be relaxing. Though good for blog posts (as in, I actually find myself writing them), this is pretty bad for sanity.
I’d like to ask you RAers if anyone has experienced lower jaw swelling related to their RA? What was it like and how was it treated?
World gonna be so cruel to you, world gonna be so mean. I’ll catch you when you’re fallin’ through. I’m gonna throw on you, like a trampoline.
That song made me feel better today, so I wanted to share it.
I got back from an awesome, but non-budgeted vacation only to be greeted by an unexpected $600 medical bill. Yippee!
After rounds of phone calls with nurses, insurance agents and billing people, I found out that the reason for the bill is because my in-network specialists billed insurance as “outpatient hospital visit” rather than “in office visit.”
The problem is that my in-network specialist rate of a $50 copay apparently only applies under certain codes. And this particular hospital didn’t know the magic words. That leaves it as being charged against my deductible, a way higher amount. My insurance claimed they can’t do anything about (United Healthcare BTW).
So, I went back to billing at the hospital, who told me that it was state law that they bill it that way. I called bullshit – the other rheumatologist that I see also has an office in a hospital, and I’ve never been charged more than my copay (they’re in the same state, in case you’re wondering). Billing claimed there was nothing they could do except offer me a payment plan.
So that leaves me hounding the nurses to resubmit the bills. I feel bad about this. Nurses already have a million things on their plate, but should I really be penalized $600 because they chose to use one code over another, equally applicable code? I haven’t heard back from them yet.
The whole mess is frustrating. I went to this doctor because they were in-network. I triple checked the UHC website to make sure of it, so that I wouldn’t be charged out-of-network rates.
A system that requires you to jump through hoops, call and clarify every little visit, procedure and test before it’s done, speak to insurance about which codes to use, and then hound nurses to make sure they’re filing bills under the codes that work for your particular insurance policy is broken. And bureaucratic BS.
Now don’t get me wrong, I’m not ungrateful. My insurance allows me to be on medication for less than $500 per year, when it would otherwise be costing me about $32,000 per year (Enbrel and methotrexate), and therefore is something I couldn’t live without. But that doesn’t mean the system’s not rife with inexplicable inconsistencies, nonsensical loopholes and traps, and a whole lot of incomprehensible coding and rules.
I don’t have answers for you, I only know Obamacare won’t solve it. Do you have advice or insurance horror stories? I’d love to hear them!
For those of you that follow my blog, I am very interested in advice…
As you know, I went to get a second opinion on my rheumatoid arthritis treatment because a family friend’s death illuminated the connection of methotrexate to interstitial lung disease.
Well, I went to a pretty renowned hospital and saw a very nice female (wow, rare!) rheumatologist who is not much older than I am. She was easy to talk to, smart, and, since she works in a research hospital, very up-to-date on the latest RAD research.
And get this, she wants me to try to go off methotrexate and see how I do with just Enbrel. Her reasoning was that a) I have valid concerns about MTX side effects, b) my last two liver tests came back high, and c) why not try it?
Granted, she hasn’t been my doc, so hasn’t seen me before my drug therapy or on bad days (it was a good day when I saw her). But she thought my treatment may be a bit unnecessarily aggressive.
If going off MTX didn’t go well, she talked about putting me on Azathioprine, which I know nothing about, but pulmonologists (lung docs) like better than MTX. Has anyone been on Azathioprine or have thoughts about it?
*It should be said that methotrexate causing interstitial lung disease is quite rare, and in many cases treatable. I am just a little sensitive about this because I had severe interstitial lung disease as a child. My lung doc says that I’m not necessarily at more risk than the average RA patient for developing ILD, but I’d like to play it safe.
But, of course, I’d also like my treatment to work.
I’m scared to death of getting off MTX when my current drug therapy seems to be working pretty well.
I also don’t want to be on MTX for the rest of my life…
My current doc brought me down to seven pills per week from 10 because of my liver, but I know he’d rather see me stay on the MTX.
I feel as though I have to decide on both which doc to go with (you can’t have two rheumatologists, apparently; they’ll just disagree on everything) and which treatment plan. And I feel like I have to decide by Sunday, which is methotrexate day for me.
Finally, how do you even break up with a doc who’s been kind, effective, and accessible? And should I? The new hospital offers more cutting edge care and is bigger, so my rheumy would be consulting with other rheumatologists and pulmonologists. I can also participate in research there. BUT, it’s further from my house and my new doc may be a little less accessible than my current one.
If anyone has advice on how to choose doctors, break up with doctors, or switch treatment plans, I would really love to hear it.
Angsty RAD blogwriter 😉
A lot has happened since my last real post, so bear with this, cause it’s gonna be all over the map…
The Good – Marathon Training
Last weekend I ran my 20 miles!!! This was my peak goal for training before my marathon. I’m going to do one more long run (16-18 miles…hopefully 18) and one more longish run (12-14 miles) and then that’s it… Marathon time!
The run itself went pretty well. My training buddy came up and we ran all quadrants of my town – a serious whirlwind tour including bike paths, trails, roads, and pit stops at a grocery store and a rec center (did not do good things for our time).
Mile one was hard, but it usually is. My new-found asthma was flaring a bit, despite the inhaler I’d taken before. The asthma went away pretty quickly though. Then I got into a groove and miles 3-12 were breezy. Mile 13, not so hot. Miles 14-16, feelin’ grand. Miles 16-18, the wind started blowing and I was struggling a little. Miles 18-20…REALLY AWFUL (I didn’t want to tell you that, but it’s true). Suddenly, my body started hating me – knees, outer hips, numb toes, and, man-oh-man, the bottom of my feet ACHED.
Not a great note to end on, but at least I did. The marathon’s gonna be tough, but I’m confident I’ll cross the finish line.
On another note…
I had my three month check-up with my rheumatologist.
The Good – No New Damage
My new set of X-rays show no new damage! Hooray! Gotta hand it to all those scary drugs I’m on for keeping more bone erosion and permanent damage at bay!
The Not-So-Good (I know, I said bad in the title, but I don’t want to be that negative)
My general pain and inflammation level is not approving much lately. In fact, I think it’s worse than three months ago. Remember my left wrist? Well the thing doesn’t exactly look or behave normally still… About a month after the cortisone shots, the skin where the rheumatoid nodules had been became rough and colorful (red usually, but sometimes white or purple). One time, my mom even asked me, very concerned, whether I’d burnt myself.
Aside from seemingly scarring my skin, the shots worked pretty well for awhile. Over the last month, my wrist bone seems more and more swollen. Now it’s gotten to the point where I think it’s pressing on my nerve, sending a shooting nerve pain up the left side of my hand at really fun, inopportune moments.
Given the way my skin reacted to the shots, my doc doesn’t want to treat the swelling with another shot. In the end he recommended more methotrexate. That’s right – the drug that’s freaking me out right now because of its connection to interstitial lung disease? More of that.
He did talk to me about MTX and ILD. He assured me that he reviewed my chest X-rays and doesn’t believe that just because I had ILD in the past, I am more likely to get it again. He also said the chances of getting it are very low. It’s reassuring to me that he is aware of the risks and made the call anyway.
He also said he didn’t want to put me on methotrexate-alternative luflumonide because it causes birth defects (as does methotrexate), but takes even longer to leave your system than MTX. Given that I don’t want to give up on having kids someday yet, that reasoning sounded all right to me.
Either way, I’m still trying to get that second opinion. No appointment yet, but I sent the referral in and now I’m waiting to be approved.
The Bad (Sorry, it’s not all sunshine and rainbows…)
My doc says 10-15% of his patients are on a biologic alone and not taking it along with methotrexate. This number is really disappointingly low to me. As is the number of patients in remission who aren’t on drugs (to be honest, I didn’t even ask). I know I should be grateful that there are drugs that help as much as they do. I just don’t want to be on them for the rest of my life. This may sound negative, but I want you to know that I feel pretty good about the research being done on RA and the chances of better treatments and a cure in the (hopefully my) future.
Also disappointing is that rather than decelerating my meds because of my outstanding remission (I wished), I’m upping my methotrexate once again. I’m now up to 10 happy little yellow pills per week. This has made me majorly bummed, which brings me too…
The Ugly – The Weepies are not just a fantastically sad indie band
For whatever reason, my disappointment at being where I’m at a year post-diagnosis is manifesting itself in a major case of the weepies. Luckily, it’s mainly been reserved for my boyfriend, two close friends, acupuncturist, and therapist, but that’s too many people for this girl. The only thing left is to admit it to the blogosphere and hope that by sharing, I can cultivate some of that Kris Carr wisdom and move on with my life.
I know that things aren’t all bad. I’ve made major progress since being diagnosed. I rarely feel stiff in the morning (I think my pain scale may differ from non-RA’ers, but there was a time when mornings meant that non of my toes would bend for an hour…making walking comically difficult.), my energy and GI issues are generally much better, my feet are not nearly as swollen or painful. I’ve become a bit more of a bad-ass because now I can inject myself and know that I’m a hell of a lot more resilient than I knew before. I also am halfway to med school given all the research I’ve done… 😉
But there are these moments, like today when I struggled to zip my right boot up because my hand wasn’t cooperating, when I have trouble seeing the good. There’s like this echo chamber in my mind of negative thoughts that can drown out all logic if I let it.
I for one am not going to be celebrating the one-year anniversary of my diagnosis drowning in negative thoughts and grieving something as dumb as a zipper. I’ll be in Barcelona running a marathon and celebrating how far I’ve come. Thanks to all of you for cheering me on. Wish me luck. 🙂