I am long past overdue for a blog post! Things have been crazy in my world. My grandfather passed away and my sister had her baby seven weeks early (both are doing well). Meanwhile my works been busy (in a good way) and I’ve been fighting a cold ever since getting back from the funeral two and a half weeks ago.
To top all that off, I’ve been experiencing my strangest symptom yet: hives. I woke up a week ago with huge hives covering the back of my right thigh and a small part of the back of my left thigh. It’s evolved from being lumps, to a big red blob, to small bumps, to now taking on a purplish hue.
I went to my rheumatologist on Friday, and he ruled out the rash as a sign of Lupus. He also didn’t think it was a bug bite or related to my Raynaud’s/Chillblains. He told me to skip my Enbrel this week and follow up with a dermatologist if it was still around Monday, but of course they all seem to be booked through the first week in December. So that leaves me guessing and Googling at what could be the cause. A sudden onset allergy to Enbrel? A random reaction to my cold? Some bizarre complication of RA?
Have any of you experienced anything like this? My solution for now is to go to urgent care if it gets worse, and to do my best to ignore it until it gets better.
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.
My boyfriend likes to tell me he’s proud of the way I’ve handled my illness. He says he’s proud of how I’m able to give myself shots, go in for regular blood tests and doctor’s appointments, and just handle all my medical stuff.
There is something so powerful in those words: I’m so proud of you. When you’re a kid, you hopefully get to hear your parents tell you their proud. But as an adult, how often do you really get to hear those words? Not nearly enough.
And man, it feels good to hear him say, “I’m proud of you.” Sure, there’s this voice of protest that wants to tell him that it’s strange to be proud of someone for doing what they have to do. For me, it doesn’t seem like I have a choice in the matter. I’ve been dealt a less than ideal hand. Who hasn’t in one way or another? I deal. Should I really be proud of myself for that?
So to all of you guys dealing with a chronic illness or a family member with a chronic illness, I want to tell you I’m proud of you. The path you’re on isn’t easy. It may seem that you’re just doing what you have to do to survive, but you’re juggling more than people ought to. You’re handling a really ungraceful illness with grace, and I’m proud of you.
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?
Alright, officially Invisible Illness Week was Sept 9-15th, but better late than never, right?
1. The illness I live with is: Rheumatoid Arthritis
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: probably 2010
4. The biggest adjustment I’ve had to make is: listening to my body and taking it easy when I’m in pain or fatigued.
5. Most people assume: they know what Rheumatoid Arthritis is, but they’re usually thinking of Osteoarthritis.
6. The hardest part about mornings are: I move a little slower than I used to. AND remembering to take my vitamins.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: Oxo Good Grips kitchen tools and my grip jar opener
9. The hardest part about nights are: when fatigue equals a busy mind and insomnia, not sleep.
10. Each day I take 6 -14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: will try anything. Personally, yoga, acupuncture and changing my diet (no gluten, less dairy and sugar, more veggies) help a lot. If I could afford it, I would get massages more often.
12. If I had to choose between an invisible illness or visible I would choose: I’m a private person, so probably invisible.
13. Regarding working and career: I’ve kept my career, but I’ve embraced (and have been blessed with an office that embraces) a flexible schedule. This lets me start my mornings slower or work from home when I need to.
14. People would be surprised to know: how bad my symptoms were before I went to the doctor. I was really good at the “grin and bear it” denial technique.
15. The hardest thing to accept about my new reality has been: that this disease is chronic. When I was diagnosed I thought I would be the exception to the rule and go into remission within the year. This hasn’t been the case.
16. Something I never thought I could do with my illness that I did was: RUN a marathon.
17. The commercials about my illness: feature older people golfing and make me roll my eyes.
18. Something I really miss doing since I was diagnosed is: going out for a night drinking with my friends. This is a double no for me because the drugs I take (methotrexate) are hard on your liver and I try to be kinder to my body these days.
19. It was really hard to have to give up: alcohol (see above) and high heels. I still indulge in both on occasion.
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: go-go-go ALL day long – run, climb, dance, party. I’d wear high heels. I’d stay up all night. I wouldn’t even give a passing thought to “paying for it” the next day or even week.
22. My illness has taught me: I’m stronger than I think and everyone is going through something, so be patient and kind with yourself and others.
23. Want to know a secret? One thing people say that gets under my skin is: “But you’re too young to have arthritis!” If this were true, I wouldn’t have it and hearing this just makes me feel ashamed and misunderstood.
24. But I love it when people: ask me sincere questions and want to know more about RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have two I come back to: “Never, never, never give up.” – Winston Churchill; and “So it goes.” – Kurt Vonnegut
26. When someone is diagnosed I’d like to tell them: It’s tough, it’s scary, it sucks. It will get better. You will feel better than you do today.
27. Something that has surprised me about living with an illness is: the supportive community of people I’ve met (mainly through online support groups).
28. The nicest thing someone did for me when I wasn’t feeling well was: just let me cry and then ordered me Chinese food in bed and hung out all day, watching funny TV shows.
29. I’m involved with Invisible Illness Week because: I think awareness of invisible illnesses is important to funding research and finding cures.
30. The fact that you read this list makes me feel: honored and vulnerable