18 March 2014

Back To The Hospital

I started to write this post from my room at a sleep clinic after being released from the hospital that morning. I woke up Sunday feeling like poop and with blue lips. John's response to my blue lips were, "We are going to the emergency room." I didn't argue or resist, even I realize that a person shouldn't have blue lips. After being put into a little curtained room at the ER, my husband told my nurse I had passed out the night before. I hadn't even realized I had done this. Later I found out that he and Nia have been observing me blacking out for a few seconds at a time since December. What! Why haven't I realized I have losing seconds at a time for last 3 months?

So, lets have a little recap for people that don't generally read my blog. In December I was hospitalized for passing out, my blood pressure and pulse rate erratically and quickly going high and low, being absolutely exhausted (unable to get out of bed exhausted), being incoherent, and dizziness. This wasn't something totally new, I have had it happen before. Several times actually in the last 5 years. Before when it happened, I was always pregnant (in the last 5 years I have given birth to 2 amazing little boys and have had 2 miscarriages). I was always told it was just one of those weird pregnancy things and would go away when I was no longer pregnant. It has never been constant. It will go away for weeks or months and when it comes back may last a few seconds or (like in December) a few weeks. I am not however pregnant now (I was not pregnant in December nor have I been that way since) and since December I've had more time feeling crummy than feeling normal. In January my primary care physician (a new doctor for me because of moving in the fall) told me my blood pressure and heart rate issues are being caused by the muscles in my heart spasming, which is caused by fibromyalgia (I was diagnosed with fibromyalgia about 7 years ago). The good news is I finally have a doctor that realizes my fibromyalgia is key in figuring out my health. However, I don't know what to do about what's going on. I can't do many normal, everyday things if I'm prone to passing out at the drop of a hat. Not being able to safely pick up my baby or drive kind of puts a huge damper on my life.

Where are we at now. With the blue lips and blacking out, the doctors are thinking this might be more than a little fibromyalgia flare up. While in the hospital I had every possible test known to man run on my heart. Everything with my heart looks great. A cat scan was run to check for bleeding in my brain. Cat scan looked fabulous. I didn't leave the hospital feeling any better or with any answers again this time, but I did leave with a very distinct plan from my doctor. This is good, it's not something we have had when leaving the hospital before. Also, no one is trying to explain it away with the excuse of pregnancy. What's the plan? Well, my doctor wants to see what the results of the sleep test look like and is considering referring me to a neurologist. Depending on how that goes we will then look at the endocrine system. These test are expensive, time consuming, and not fun. So instead of doing them all at once, we are going system by system. Putting the most important systems for life at the top of the list.

I'm putting a complete list of my symptoms below. If anyone has a clue or slight feeling at what's going on with me, I would love to hear from you.

None of the following are present all of the time, I go weeks without any of them.
-Vision: sometimes I see spots or a halo around my vision field
-Poor gate: I feel like I'm about to fall over
-Pulse and blood pressure jumps around
-Irregular heartbeat- this is almost always present
-Light headed
-Memory loss/confusion
-Blacking out
-Extreme exhaustion
-About once a month I have a night of insomnia
-Crankiness: I get really grouchy when I'm not feeling well
-Mood swings: also when not feeling well
-Numbness on one side of face

-For the last 5 or 6 months everything has gotten a lot worse about 5 or 6 days before my period starts. January and February the symptoms lasted 2 days and then diminished. I might mention here this is when my periods seem to have become regular again after having Ember in May.
-I always have these symptoms just before catching any other kind of illness. Example: If my entire family catches a stomach virus. The day before I feel any effects of the stomach virus, I have most if not all of the above symptoms. This has always been worse than the actual illness that follows.

I'm home now and I've experienced all of the symptoms for most of the day. They are not as bad today though.