You know the phrase “If you want to make God laugh, tell Him your plans“? I’m a firm believer in this many times when I’m in and out of doctor’s offices. As I’m leaving one specialist, I suddenly find myself in another ward or on the phone to schedule an appointment with a completely new specialist to diagnose new symptoms from side effects of medications or new complications of my disease.
When I started having issues neurologically a few years ago, my care team seemed to multiply by the hour.
“Something doesn’t add up” one doctor would say. “But I can’t figure out what it is. Let’s send you to a _______-ist so they can figure out what this new manifestation is.” Suddenly, one doctor turned into an Endocrinologist, a Urologist, a Neurologist, Allergist and an ENT.
Not only does this cost me a lot of unnecessary stress and patience, but suddenly I find myself dishing out more cash that I don’t have. I get it – autoimmune disease is complicated. And usually, when you have one Autoimmune Disease, there are likely to be complications with more than one system in the body. When does it end?
It takes time to diagnose all of this, and when I say time, I don’t mean overnight. When I was dealing with a rare form of migraines, it took months before one of my symptoms was even taken seriously. “It’s just a side effect of your meds,” they’d say, when I knew that wasn’t the case.
Here comes an important lesson on advocacy:
Speak up for yourself when you know something in your body has changed and be heard.
If you’re not being heard, do not be afraid to seek a second opinion – or a third opinion – in order to start seeing some positive results.
I spent more time in my Neurologist’s office this year than I’ve ever spent before and soon, it began to affect my Crohn’s to the point where I was unable to work. The stress in my body would not calm down no matter the amount of steroids, IVs or infusions. It seemed that when one symptom would calm down, that would reflect an increase of another symptom in a completely different organ! I was losing hope, money and ultimately, my job.
Finally, last spring I found out the rare form of migraines I suffer from and we began treating it. I’m at a point now where they are somewhat controlled, but they come in clusters & the symptoms are reaching a peak again. The symptoms are scary enough to deal with on their own. Add Crohn’s to the mix and I’ve got myself a brewing volcano ready to blow at any time.. and it did.
The last year or so, I’ve been dealing with partial obstructions way more than ever before.
At times, I’d be able to stay home and try to deal with them on my own, but over the last 2 years, that hasn’t been the case. I had obstructions around Christmas and again in spring. It changed my “plans” up dramatically, especially considering I was to train for my first sprint triathlon coming up in summer! Like is always does, life’s plans changed and soon I found myself running out of medical leave and quickly. Between all of my specialists, it was like managing 2 very full-time jobs and I just couldn’t keep up any longer.
With around 10 care team members, I spent more time trying to manage which doctor I had to see when and schedule the rest of my life and work around all of these new tests I was having. Waiting and worsening. Waiting for authorizations through insurance.. while filling out checks and mailing bills in. That’s what my life had become. In and out of flares, as well as emergency rooms – my life was going from unbalanced to unmanageable.
Life ultimately threw a wrench in my plans when I recently found myself unemployed. I’m looking for new health insurance and trying to find ways to make up for lost time in work, as well as trying to secure my plans for the future. I’ve not spent my days looking forward toward the future, as I believe that as one door closes, another one opens. I am trying to deal with these setbacks in the only way I know how to with any illness – perseverance for answers, teaming up with my doctors and listening and complying with my treatment plans.
It’s been a very rough 6 months, but if any of my 13 years living with Crohn’s Disease have taught me anything, it’s certainly “expected the unexpected.” “Hope” is the only free prescription and I’ll be filling it quite frequently in my days to come.