Sunday, November 1, 2015

The Next Chapter - How being sick made me realize how sick I am

After 37 years, I've had my fair share of stomach viruses.  And they suck, no doubt about it.  I don't care how old you are or how often you've had them, they're never nice.  However, this past week, I realized how having rheumatoid arthritis and fibromyalgia completely changes how I have to deal with preventing, treating, and recovering from what most people have the privilege of saying is "just a bug."

My stepson came back from his mom's house with a stomach virus.  He ran a low grade fever, got sick to his stomach numerous times, had dry heaves, slept all day, and was over it in about 12-18 hours.  I admit, I am a total momma bear.  I was up with him once or twice through the night and my husband got up the remainder of the night because I was exhausted and my pain levels were on the rise.  But then he was still running a fever when I was getting ready to leave for work, and I just can't imagine leaving either of my boys at home alone while they're sick.  So I spent the day at home, checking on him, and just being there.  So mistake #1 - I was around him way too much.

It may sound silly to say that I should have sequestered myself, but I indeed should have done so.  Rheumatoid arthritis is an autoimmune disease, which means my body is always fighting itself.  I take Enbrel to combat this disease, but it is an immunosuppressive drug as well, which means it makes my immune system weaker than it already is.  Some people compare it to be on chemotherapy.  So even the slightest exposure to a virus completely took over my system.  Radically.  My immune system was so suppressed that they believe my liver went into shock in an effort to fight the virus.  One of the reasons they kept me for observation was because my lab test were so freakishly out of whack.  However, nothing was ever found to cause the sudden elevation and as soon as my symptoms started to come under control, the labs began to normalize.

Moral of the story:  Having no immune system pretty much means you're sick all the time.  It's just a matter of what you're exposed to before you realize how sick you can actually get......and I got pretty sick.

It's pretty simple - Push to hydrate and keep trying to take my regular pain management meds, because the minute I lose control of my pain - it flares up and then I can't control anything.  I also have the privilege of having had a vertical sleeve gastrectomy, which means my stomach is about 80% smaller than the normal person's stomach and it's in the shape of a banana.  If I can't keep liquids down until they pass through to the bowel, then it will come back up and dehydration is eminent.  If I can take my meds and keep that down for the approximately a half an hour it would take for the liquid to pass, then I could stay ahead of the game.  Instead, I wasn't even keeping clear liquids down, which meant that the minute I took my medicine, it came back up and the fibro flare that has ensued has been unlike anything I have ever experienced.  And the abdominal pain from the virus itself doubled me over.  I couldn't control any pain.

Let me make this VERY clear.
The ER doctors and the hospitalist that admitted me did not care about any other pain than the abdominal pain and figuring out why my liver was so inflamed.  They were not there to treat my fibromyalgia pain.  They made that very clear.

Once my abdominal pain began to subside, I dropped my pain scale way back so that they would let me start taking my regular medicine so I could control my pain on my own.  It was very obvious that no one wanted to touch the idea of treating someone with fibromyalgia pain, so I didn't bring it up again after the first couple of encounters.  It's a very sad situation that doctors - regardless of specialty - can't or won't look at the patient as a whole and see how one thing is effecting other things.  Suffering is suffering and they definitely could have looked at my health records to see that I have not been to the hospital other than for an elective procedure and that I'm not someone who abuses my medication or treatment.  Instead, I was left to suffer some severe back, rib, gluteal, and leg pain, (in a hospital bed I might add, which is uncomfortable for regular people, let alone a chronic pain patient) until I could manage it myself.

Long story short - next time around, I'll treat this better on my own.  Forcing fluids, heat, rest, medication.  Don't get me wrong, the time may come once again that I'll need IV fluids, but after the pain I went through while IN the hospital, I'd rather go it alone.

This is the stage I am currently in.  Day 2 home from the hospital, I have been up and doing way more than I probably should have today. It's a constant battle for a lot of us Spoonies to stay put once we start to feel better.  I get some energy and I feel like I need to be grocery shopping, doing laundry, cleaning house, walking dogs, making get the idea.  When in reality, I should maybe just walk the dogs and go back to resting.  Then maybe rotate some laundry and rest again.  Today, I put up my Seattle Seahawks Christmas tree, because I love Christmas and I've been watching Hallmark Christmas movies all day since they started running them 24 hours beginning this weekend.  It makes me happy.  I believe that having joyful things around you during recovery is very therapeutic.  Having my dogs....and twinkly lights make me happy and that's helpful.

In hindsight, it's been very emotionally taxing for me to realize that I am sicker than I used to be.  I'm an avid blog and article reader, so I know the danger of the autoimmune illness community when it comes to getting sick, but I guess I always thought I was different.  Like I was better than that and I would NEVER get THAT sick.  I was wrong, and I'm trying to come to grips with that.  I am sick.  I've known that for a long time, but this experience has taught me that I'm sicker than I realized.  Now it's just a matter of other people understanding it, too.