Monday, March 30, 2015

Even the Little Things

Life with chronic illness can encompass every area of your life. Even seemingly normal or simple events can wreak havoc on your very fragile body. My recent emergency room trips are a perfect example.

A few weeks ago I started having difficulty breathing at night and also noticed my heart would beat rapidly for little or no reason at all. I have strange and new symptoms all the time so even though I was concerned I knew that there wasn't much that could be done. I kept most of it to myself, but took things a little slower to keep my heart from racing.  

And then one day I got so caught up in a phone conversation that I put off taking a shower till the very last minute. Mind you a shower is one of the most painful and exhausting things I can do. Afterwards I rushed out the door to pick Shawn up from work. The whole car ride I struggled to catch my breath. There was a lot of vog so I figured that was at least part of the problem. When I got out of the car and walked down several steps I twisted my ankle. Twisting anything with RSD/CRPS is not a good thing. When we got home my ankle hurt but my breathing was somewhat better and eventually I fell asleep.

The next morning my ankle felt better but I could barely breathe and my heart really hurt. I had never experienced anything like it and knew I needed to go to the ER. The rest of the story you can read here. All the tests came back normal which is generally a pretty good indicator that the culprit is Lyme or RSD/CRPS. My primary care doctor confirmed that this is the case. Thankfully I am feeling much better although I am trying to be extremely careful of not overdoing it. I mean if "little" things like taking a shower and then twisting my ankle can cause this extremely scary episode then it's a pretty good indicator that I need to be even more cautious than normal. 

Friday, March 20, 2015

Hope and Doctors

In my last post I wrote about some doctors who didn't believe me this is the complete opposite.  In the past two days I have been in the ER twice.  One scary new symptom after another. 

On Wednesday I could barely breathe. Our best guess is that the RSD spread is impacting my heart. Every single test came back normal. I'm pretty used to that but it is so hard to rarely get answers. 

Yesterday I had an appointment with a neurologist who was so incredibly caring. He even said that so often patients with conditions like RSD or Lyme are faced with doctors who have no clue about the condition.  So then instead of the doctors admitting they don't know everything they'll call the patient crazy.  I was astonished to hear that come out of a doctor's mouth. I have experienced it more times than I can count. To hear him say that gave me such hope. Unfortunately there isn't much he can do but he cared and that means the world to me. 

Later that day my left side became numb, tingly, and extremely painful. The neurologist's office wanted me to go to the ER. More tests were run and still no answers. No answers is incredibly hard but each and every person I saw in the ER never once doubted I had Lyme or RSD. I can't tell you how refreshing that was.  There is hope in the medical community. 

Today I am still struggling to breathe although there is some improvement. Left side is still numb and tingly but not too painful. We're dealing with serious stuff and we have no answers. Your prayers would be appreciated as we try to figure this out. 

Sunday, March 15, 2015

When Doctors Fail You

Most of my life I assumed doctors always knew more than me, And there is some truth to that but since I am super complicated health wise, I probably know more about my illnesses than most doctors. My amazing LLMD is the exception. Most doctors are either intimidated by me or are so stuck in their own ways that my health is put at risk. Thankfully most of the time I know better than to listen. If I had listened three years ago, I wouldn't be here to tell the tale.

My first diagnosis was RSD/CRPS in my right ankle. Later it traveled to my whole right leg as well as the left. About two years ago I noticed weird coloring in my hands and some pain. I immediately thought it was RSD/CRPS. My doctor at the time dismissed it but ran a test for arthritis that showed nothing. I had bigger health concerns at the time and I thought my doctor knew better, so I let it go. About a year ago the symptoms became worse and worse. I was sure the RSD/CRPS had spread. My new doctor wasn't convinced or concerned but sent me to physical therapy anyways. P.T. was helpful until I realized the agony of the drive was defeating the purpose. And then my only option was to use what I had learned and figure this out on my own. I've since been able to manage the pain naturally but it is progressing rapidly from my hands, up my arms, and in my neck and shoulders. Everything is becoming extremely challenging. I am more and more convinced that it's RSD/CRPS although there may be other things going on as well.

And here is where I am angry. Angry that my concerns are constantly dismissed. Also, angry at myself for putting so much trust in doctors instead of listening to my gut. I want to believe them but I can't go in blindly assuming they know everything.

Only recently I learned that high doses of Vitamin C might lessen the risk of RSD/CRPS spreading. I wish my doctor would have told me that when I first went with concerns. It may have done nothing but it would have showed that my doctor was listening and took the time to research. Instead I walked away feeling like I was over thinking things and I began to dismiss the pain. Today typing this post is incredibly painful, I wonder if things could have been different.

The pain in my arms and shoulders are reminding me that this is reality. Better days could always be ahead. But if this post helps one person not dismiss their pain because of their doctor's response, then my job is done. Pain is telling us something is wrong, it should never be dismissed.