The Pain Rollercoaster

It's a new blog look for a new start!

So, let's start with the beginning.

When I was a kid, I was never sick. I rarely missed a day in school. I played sports. I did everything kids do. Nothing stopped me.

When I turned 16, everything changed.

In short, my emotionally distressed self developed an eating disorder that led to 12 long years of active abuse to my body. I alternated starving myself with binging and purging, and every day I exercised obsessively. Even after discontinuing the eating disordered behaviors, I exercised religiously and hard.

At one point in my running career, I decided to train for and run a marathon.  I actually ran a full 26.2 miles as part of my training but never got to run in the event because I had an intestinal blowout of sorts. Inexplicably, eight inches of my colon died somewhere along the way, so of course, I had surgery to remove it.  (Frankly, if I had to guess a cause, I would say training on very little food to fuel me paved the way.)

After recovering, I tried running regularly off and on. I say off and on because I always ended up with some kind of injury. It was only two years ago that I admitted defeat as a runner and resigned myself to walking for exercise. I miss running. It's such a great calorie burner. It kept me thin. And while I don't actively have a diagnosable eating disorder, my eating can still be pretty disordered.

Let me explain: I've come to terms with the fact that once an eating disorder, always a disorder of some kind. Most often for me and for others I know, it manifests itself in a poor body image. That part never has gone away, no matter how hard I've tried acceptance. As a result, my relationship with food has never really become healthy.  I have had periods of healthy eating, but like most people who diet, I have never maintained long-term healthy eating.

So I admit it: My eating habits are still crappy a lot of the time. If it weren't for Dorsey's cooking, I would rarely eat anything healthy; I would not eat regular meals. I could easily snack my way through life. I'm just messed up that way.

But that's not all of the abuse on my body. For a period of several years, up until six years ago, I also abused prescription medications with alcohol. For some unknown reason, my body always hurt. I didn't feel well a lot of the time. I would go to doctors and be treated for various symptoms, from my gastrointestinal issues to pain. I'm telling you, for the past almost 20 years, it has always been something and always some kind of pain. I was tested for so many different diseases, but nothing was definitive, except fibromyalgia.

I have continued to have pain. Pain everywhere. Five years ago, I started going to a pain clinic for treatment. MRI's indicated three bulging discs in my spine, which partially helped explain pain. Fibromyalgia, of course, is a big cause. I had been to a rheumatologist for the fibromyalgia, but I stopped due to his incompetence. I also continued to have migraines.  By the pain clinic providers, I was prescribed various opiate drugs, and, frankly, I did very well on them. I can proudly say I never abused the medications or received a high off of them. Those days have long passed.

Then the United States got into an opiate addiction crisis. Opiate overdoses and deaths became a serious problem, so the government cracked down on the medical community; I got a knee-jerk reaction from the clinic out of it. A little over a month ago, the clinic discontinued my pain medications, citing fibromyalgia is not indicated for treatment with opiates. (And it's not; in some cases, it can make it worse.) Somewhere along the way, they seemed to have forgotten the other sources of my pain.  Don't get me wrong; I didn't want to have to take Hydrocodone, or Fentaynl or Suboxone or something just as dangerous and strong for the rest of my life. I hated going to that clinic once a month so I could pee in a cup in order to get my refill like a good little drug addict. I couldn't help but feel treated like a drug-abuser, even though I didn't abuse any of my medications. I was just thankful to get relief. It wasn't perfect relief, but, as my dad has always said, "Ol' somethin' beats ol' nuthin'."

For the past five years on strong pain medications, I've still had lots of days of not feeling well, but my lifestyle is such that I have been able to manage it. I've been fortunate to not have to work and to be able to pursue hobbies I love. I get to do my antiques business.  I've gotten to drive myself across the country many times. In short, I've managed well enough on my pain medications.

But everything changed a month ago when taken off of my opiate medication; instead, the clinic prescribed me a couple of things to help manage withdrawal symptoms, and referred me to a rheumatologist.  That referral was for an appointment three months down the road! I was so angry with the pain clinic people, not because I didn't have the opiates anymore, but because now I had absolutely nothing to manage my pain.

So here's the bad news/good news part:

Bad news: I have miserably suffered opiate withdrawals, despite the antidotes (it feels like the flu times a thousand), and my pain has SKY-ROCKETED. Clearly, the opiates had masked the majority of my pain for a long time.

Good news: It's only by the grace of God and maybe some help from another doctor that I got in to see the rheumatologist earlier than January.  I really, really, really like Dr. Davy at Allergy Arts. She was so nice and supportive, as was everyone else there! I finally felt like my pain was being treated as legitimate and not all in my head. (It's really hard not to feel like a head-case without diagnoses.)

Dr. Davy performed several physical tests, took sonograms and X-rays and seven vials of blood.

Now, we finally have answers. I have been diagnosed with rheumatoid arthritis and lupus. When told, my response was, "Oh, shit!" And then I cried. These diseases don't have cures! This is lifelong! These diagnoses mean I have one disease that causes muscle pain (fibromyalgia); another disease that causes pain in the small joints (RA); and another that causes pain in the large joints (lupus). That's pretty much pain all over.

But there's still good news in this: I'm healthy internally. These diseases haven't done anything to my organs or blood or anything else important yet. Dr. Davy told me that with treatment, my issues can be contained from progressing — I even asked if I would get really big knuckles and curled hands someday. The answer was no, with carefully monitored treatment. (That's great news for the jewelry freak in me!)

The fact remains, however, that pain will always be part of my life. Right now, it's exceptionally bad — but still lots better than last week. As I said in the previous post, I've lost a lot of sleep and cried a lot of tears because I've hurt so badly.

The medications I've been started on will take effect slowly, I'm told. For now, I get to hold on and just bear the pain for awhile. However, Dr. Davy and her nurse practitioner also told me that patients do really well, generally, on these treatments once they take effect. I'm hopeful that will be the case for me, too.

These illnesses, including fibromyalgia, are not caused by just one thing. It takes several pieces of a pie to create the whole problem. In my case, one significant piece is the amount of trauma I've subjected my body to for so many years. That's why I said in the last post that it's my fault. It truly is, though it wasn't on purpose.

A familiar adage says that youth is wasted on the young. That has been true for me, and I very much regret how badly I mistreated myself. It's not that I intended to hurt myself or create such problems; I was just messed up all those years. But there are consequences for our actions, and these are mine.

I'm not messed up (much) anymore, so I have to get serious about taking care of my nutritional health. The goal is to contain the diseases and prevent progression, as well as pain management.

While neither of those diagnoses are good, I'm thankful to have real answers so that I can be treated properly for them. The rest is up to me.

And ... it could always be worse.