Posts Tagged Autoimmune Disease
I was diagnosed with Rheumatoid Arthritis or Rheumatoid Autoimmune Disease when I was 29. It’s an awkward age to be told you have a chronic disease.
There was so much I hadn’t yet accomplished. At the time, I was single, struggling to get my business off the ground, training for a marathon, and pushing thoughts of kids and marriage into the future. And then, a diagnosis of RA threw all that up in the air.
I feel like the pieces are still settling, four years later.
I got back together with a long-term boyfriend, largely because of my diagnosis. When I needed him, he was there without question. All the issues we’d had in the past paled to how much we obviously cared for each other, and that remains true today.
I pushed through a lot of ups and down and pain to cross the finish line of my first marathon. Today, I still run. Though training for a second marathon has faltered twice due to pain, I still have it in the back of my mind as a goal.
I tried to manage my business, while attempting to lower stress (doctors orders, and so much easier said than done in the world of start-ups!). The business is now doing better than ever, but stress management remains a constant struggle.
And then there’s kids…
I always figured I’d be a mother someday. I was never in a rush about it, but down the line, raising a family was always something I imagined for myself. After my diagnosis of RA, I suddenly found myself in a new reality.
When you have a name for the pain you’ve been experiencing, it becomes unavoidably real. There was no more blaming running or snowboard injuries. I couldn’t blindly keep pushing myself. I had pain walking and writing, bone erosions that no amount of medication could erase, extreme fatigue that was even causing me to fall asleep at work, a whacked-out GI tract that led to weight loss and avoiding eating all together, and depression because I had no idea why any of the above were happening to me. With a diagnosis came the answer of why, but it also brought the necessity to slow everything down and focus on getting better.
The new reality also meant being placed on strong drugs to control my symptoms, including a chemotherapy drug that is used to induce abortions in ectopic pregnancies. This particular drug requires women to be off of it for an extended period of time before even attempting to get pregnant.
Suddenly, I was far less sure I would ever be a parent. Four years of focusing on my health, coming to terms with living with chronic disease, and finding a new normal has given me the space to seriously revisit the question of parenthood.
Huge questions still exist for me. These are questions that only those of us living with chronic illness and our partners can understand.
Will I be healthy enough to go through pregnancy? If I ween off my RA drugs, will I return to the level of pain I was at pre-diagnosis? Will I be able to stay off the drugs long enough to breastfeed? If I can successfully have one child, will I be able to have another? Will pregnancy make my symptoms worse or better? Will post-pregnancy change my disease trajectory? Will the drugs I’m on be as effective post pregnancy? Will my RA slow me down as a parent? Will I pass the genetic disposition for autoimmune diseases on to my kids?
To help me navigate the complexities of this big decision, I’m reading Arthritis, Pregnancy and the Path to Parenthood by Suzie Edward May.
I’ve only just started the book, but I already identify with Suzie so well. She was diagnosed at 27 before having kids. The book offers a lot of hope, but also non-sugar-coated truth. I’ll give a more complete review when I finish it.
In the meantime, can anyone weigh in on what factors you looked at when deciding to become a parent while living with a chronic disease?
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.
There’s been times on this blog where I’ve complained or wondered about the efficacy of acupuncture. I wanted to share the very positive experience with acupuncture I had this week.
When I first took a chance on acupuncture, I went to an eastern medicine school close to me. They were VERY affordable, at only $25 for acupuncture or herbal recommendations. The only problem was, it was never relaxing.
The students weren’t always sure of themselves and the teachers who answered their questions were teaching more than treating me like a human patient.
And then after they stuck me with needles, they would leave and I could overhear them chatting with fellow students in the hallway. It was not relaxing at all and, being new to acupuncture, I would have panic attacks when they left me in the room.
I gave this clinic about four chances and then pretty much swore off acupuncture. Then my friends started recommending an acquaintance of mine who had just started her own practice. They weren’t just recommending, they were raving.
So despite the hour drive and much higher cost, I decided to go see her. I bought a five session package to save money. So there I was, committing once again to something I’d tried and given up on. I’m so glad I did.
Off the bat, the experience was more caring and relaxing. She took time to go over every bit of my history, from medical to personal, in a very human (read: not just doctor to patient, mhmm, mhmm) kind of way. I found that leaving her sessions would at the very least put me in a better mood. I couldn’t say with certainty that it was helping my RA though.
And then, last week, something very miraculous happened. It had been about three weeks since my last session with her, and I’d been struggling with joint pain and all over aches and fatigue pretty consistently for about a month. I was bordering devastation because I had been feeling so good before and during my March trip to Spain.
Not to mention, I had consulted with a doctor in March who had given me the go-ahead to get off methotrexate since I was doing so well. My constant pain that seemed to getting worse and worse was making me really nervous about getting off MTX, so I haven’t done it yet.
So last week I go to her and tell her the positives – my digestion’s been great, my wrist is no longer shooting nerve pain up my hand – and the negatives – I’m stressed and freaked out, achy all over with pain points in my joints, and struggling with fatigue.
We chatted and she stuck me with needles and let me relax (yes, actually relax) for about thirty minutes. By the time she took the needles out and I left her office, I felt like a new woman. I wasn’t in pain.
Over the last couple of days, I’ve had mild pain in specific joints – my left wrist, my right foot. But that is more par for the course and hasn’t stopped me from signing on for training for a sprint triathlon or running a 15k benefit run for Boston yesterday. The mysterious, horrible, unrelenting all over achiness has lifted.
I don’t know if it was actually being able to relax, or venting my problems, or the needles, but I’m so happy I could kiss her. 🙂 I settled for sending her this card:
I have now decided to buy 10 more acupuncture sessions with her. I hope each one is as magnificent.
I’ve been a bit concerned about the relationship between Interstitial Lung Disease and Methotrexate over the last couple weeks (yet trying not to worry, because worrying leads to flares which leads to more of a chance of RA complications…ha! FML!).
I will still talk to my primary rheumatologist about this on Tuesday, but in the meantime, I’ve decided to seek a second opinion. This wasn’t as easy a choice as it may sound. It felt like I was choosing to cheat on my rheumatologist and giving up on my treatment plan. As I told my friend, my relationship with my rheumatologist is something I want to be sensitive too – he might be in my life for many years to come!
I started by going to my allergist, who also happens to be a respected immunology expert. Up until 2008, I was seeing him once a year for checkups on my recovery from Interstitial Lung Disease. In many ways, he knows my medical history better than I do.
He told me that there is indeed a link between Methotrexate and ILD, and recommended I get a second opinion at a research hospital that specializes in lung disease. They also happen to have rheumatologists who specialize in both ILD and autoimmune diseases. Cool.
Turns out these docs are also in more demand than my current rheumy. I need a referral to even have a chance of seeing one. This left me with the choice of getting that referral from my rheumatologist or from my primary doctor (who I haven’t seen in years because I have another OB/GYN). I chose my primary doc so as not to shake the boat on my relationship with my rheumy. This choice, of course, requires yet another doctor’s appointment (yippee! – where is that sarcasm font when you need it?).
A couple other things of interest came up at my appointment as well.
My doctor said that, given my medical history, he doesn’t think it is likely that I have gluten or dairy allergies or sensitivities. He recommended just eating healthfully and focusing on eating for my marathon training.
I don’t think this means that I will run out and eat gluten again (I’ve already eased up a bit on the dairy), but maybe I’ll think about being more flexible. I also still believe that eating to lower inflammation in my body is a very positive thing I can do to help control my symptoms. My doc is very science-based (as he should be), so until a trustworthy study comes out showing how diet can ease/cure/whatever RA, I think he will be giving this advice.
I ate lunch with my family yesterday and mentioned this, as well as the idea that perhaps GMOs, pesticides and all the other industrial crap that’s made its way into our food supply was more responsible for the rise in gluten intolerance and autoimmune diseases than gluten itself. My brother-in-law and sister’s reaction made me feel like a social pariah. I plan on doing more research on this and posting it here, but I’m certainly not the first person to state this theory, so I don’t believe it’s totally off target… Does anyone have thoughts on this? Or good articles I can forward to my sister??
My doctor provided me with a list of websites that he likes to use for research because they are entirely science-based:
- FARE: Food Allergy Research and Education (www.foodallergy.org)
- American Academy of Allergy, Asthma and Immunology (www.aaaai.org)
- National Jewish Health (www.njhealth.org)
- National Library of Medicine (www.ncbi.nlm.gov/pubmed)
- FDA Medications Research (www.dailymed.nlm.nih.gov)
- Consortium for Food Allergy Research (www.cofargroup.org)
- The National Center for Complimentary and Alternative Medicine (http://nccam.nih.gov)
- The Food Allergy Initiative (http://foodallergyinitiative.org)
- Google Scholar (www.scholar.google.com)
- WebMD (www.webMD.com)
I hope this list helps everyone as you do your own research and become your own advocate for your health.