TIP JAR

Tuesday, March 20, 2012

Space Mumps



So I've been meaning to write a good post sooner or later, but things are a little strange around here in my head. I also have about no energy and anywhere from 5-10/10 pain at any given time.
I've heard from 4 doctors, with varying types of sentiment, that I NEED to be tested for multiple sclerosis. NOW.
There was a urology test thing that I had to wait >8 weeks for that finally rolled around.  I failed miserably. I swear I could see steam coming out of the Urologist's eyes when he saw I had been living with a failing bladder and had not seen a Neurologist yet. He called my new PCP. (Dropped the old one because they were useless and put me on a medication combination that almost killed me. I have to start listening to my instincts if I'm going to survive this because I knew I had learned that  Drug A + Drug  B = seizures or worse. Although, that was years ago, and I thought maybe newer research had proven otherwise.)
I was then called immediately with a "red flag" on my chart and got in to see the new PCP, who seems incredible, and told me she had never had a urologist call her and she was very glad that he did. She came up with a plan to manage pain and keep me active until my upcoming appointments decide my fate. Unfortunately, the plan isn't really working and she is on vacation this week. It's not her fault; we really thought I'd be back in PT by now and I'm not. 
We've learned a few things.
Longitude and I noticed we weren't able to even say "multiple sclerosis" or even "MS". We aren't going to unless I have an official diagnosis. If we refer to it in speculation we named it "Space Mumps" (Red Dwarf fans out there? Anyone?)
Now that it's been several days, I realize that unless I limit my activity to practically nothing I'm in terrible pain. The medication helps sporadically, and it might be fairly effective if I took it round-the-clock but then I would be going through it at an alarming rate. I've never been on this much pain medication for more than a few days. I called the MD last Friday to see if this is safe, and if so, would they refill it that quickly? I also called yesterday and today and have gotten nurses to call back, but no actual answer.
So, I have been limiting my activity and medication intake but at a certain point I just can't take it anymore!
So, I then do something ridiculously stupid like make dinner or bathe my child and I pay for it for hours afterwards. The pain gets so bad I can't turn on the TV for distraction, the sound of my daughter's voice makes my blood boil, even if she's laughing. It takes every ounce of my energy to be "nice mommy" when she comes in my room and then Daddy or Grandpa can tell when time is up and she needs to be taken to another room.
I am endlessly grateful for the help that I have right now, and I feel like I am so close to the end of the marathon (a diagnosis). 
I don't have the assertiveness skills to get my point across to the person on the other end of the phone that I need help NOW. 
I HATE going to the ER for pain relief. They are generally nice but it takes hours and I feel like a drug-seeking criminal. A lot of this comes from working as a nurse in the ER and we would say "why can't this patient's primary just control her pain so we don't have to waste our time on something this stupid"? or worse: "this patient is surely just here seeking drugs; she's been here 10 times in the last 3 months".
(I've looked; the majority of those visits were me being concerned about urinary retention and I have only come specifically for pain medication and/or imaging twice. One visit was labeled "suicidal ideation" because Mike found me on my bed crying hysterically because the pain was so bad I had terrible thoughts that I could not get rid of. And a plan. And I knew that if it was that bad, I needed help.)




I decided to open up about all this to my friends and family via email updates because from my experience, when someone I know is sick or going through a bad time, I want to know how they are doing. Even the worst of it. Not for any other reason but because I care about them. Also, I want to know how I can help, even if it's just sending an email back saying, "that sucks, I'm sorry". I have had family members/friends/acquaintances handle things completely differently. Suffering in silence? Perhaps. Maybe actually not doing too bad considering the circumstances? But how does anyone know? And if that's the way the want it, I try my best to respect that. Most of the people I'm referring to have died. I do remember them as happy and vibrant, but Jeff, I also wish I knew how you really handled the worst. Did we help you? Were we there for you when you couldn't ask us to be? Did we give you space when you needed it? I hope so. Sometimes I stand at your grave and ask the wind.


I am not going to die. Even worst-case scenario is pretty darn good considering what some of my young friends have gone through. It's a common, well-researched disease with lots of treatment options. I've chosen to be open about how I'm doing and what's going on not because I want sympathy or praise or damnation, but because I know people care. Then can choose to read or not read my emails, they can ask me to take them off the list or just send me to spam. But this way, we all have a choice, and I hope you can respect mine. I'll keep you posted.