In the beginning....

Haven't been on much this past week.  Work has gotten busier, which really isn't all that bad since it's not physical labor.  And I like to keep busy.  I was put on a prednisonepack after my neuro appt last week due to aseptic meningitis.  I fully expected adverse reactions, but was pleasantly surprised with what few did appear.  I never got agitated or irritable.  I never got wired feeling or had trouble sleeping, but of course my dr was nice enough to prescribe phenergan at bedtime for it's drowsy side effect. I did manage to get flushed, making it look like I might have just returned from a beach vacation with a sunburn!That was mildly annoying, especially when I would do it while talking to people.  LOL!  Whether it was the pred or the IVIG, I was breathing better than I had in a while, and felt more clear headed than in a while.  The headache had made me so fuzzy.  

As I tapered, I still felt fine.  Then on the 5th day of 6, I began to feel not so good.  My energy dropped a lot and the pressure in my head was returning.  I felt "ill."  My throat hurt and my sinuses were not right. Day 6, this past Monday, I felt bad.  My head was killing me.  I was dizzy again and off balance.  I had a sore throat and  stuffy head.  Yesterday, even worse.  I called my neuro, wondering if I should refill the pred pack, and he said yes but to also go see my GP just to make sure I didn't need an antibiotic.  That was in the evening though, so I couldn't do anything at that moment.   I was in bed before 9pm, with an ice mask on my eyes.  This morning, AWFUL.  My skin hurt as I showered to get ready for work. My head hurt so bad I could hardly move.  I called in to work to say I'd be working from home.  Called my GP, nope, nothing available today OR tomorrow!  Why is everybody sick when I am?! ;-)  I went up the street from my house to our neighborhood Take Care Clinic.

I've been to our TCC before, and the nurses are always nice, informative & knowledgeable.  But that was all BEFORE my MG diagnosis, so I was a little apprehensive.  In a shocking turn of events, my nurse there was familiar with MG!  She knew someone that had had it.  When we went through the list of allergies to meds, I mentioned magnesium.  I was surprised to see her type it in my profile AND to add her own note about it relaxing respiratory muscles!  Wow.  Wonderful surprise.  

My normal body temp is only 97, so when it read 98.1, I made sure she knew that.  My bp was lower than normal (it's ALWAYS low) at 104/54!  Surprising since I was in so much pain.  But she concurred with my assessment that I had a sinus infection.  And while I know we don't always need antibiotics, I was glad she went that way.  Since MG affects my lungs, that worries me more.  Since I just got out of the hospital not quite 2 wks ago, I'm not in a hurry to go back.  She went with a z-pack, which can be a concern for MGers.  But I've had it before & agreed with her on it.  My neuro's policy on the "do not take list" for MG is this...if the dr thinks that a med on that list is the absolute best med for what you have, take it but take it carefully.  Be aware and pay closer attention to your symptoms.  If they worsen, stop taking it and call them for something else.  So that is what we did.  She also gave me another pred pack, so yay, another round of steroids!  But my neuro had already said to anyways.  The pred should hopefully offset any effects of the z-pack on my MG.  We shall see.

I also had my first appt with the muscular weakness pulmonary specialist.  Well that was just weird.  First he tells me he normally doesn't see people like me in the office, he usually cares for us in the hospital!  Nice.  The whole thing was a bit annoying because, yet again, I'm finding that no drs seem to "get" how to care for you when MG affects your lungs but doesn't have you bad enough to be on a vent! He ordered a MIP & MEP today, which came in at 33 & 29.  Those numbers are worse than they were 3 days before I landed in the hospital, which was 39 & 30 and occurred on a day when I felt I was breathing better than I had been.  Normal range for women of normal weight is 89-111 for MIP & 60-79 for MEP.  And yet people look at those numbers and say "well that's not too bad."  Sure, try LIVING IT!!  It's not BAD cause I can still breathe, even if it is labored and feels like I'm suffocating!!!  And the folks that land on the vent are in the teens or low 20s!  Who cares that if I get up and move much that on some days I'd hit -18 on the NIF.  Who cares if my MIP & MEP stayed in the mid 20s for most of my hospital stay.

 You can see my frustration.  I'm thankful that breathing ISN'T worse, but much like my other MG symptoms, nobody wants to take those numbers seriously for what they are and treat it!!   I appear to be an absolute anomaly.  Apparently MGers with lung involvement aren't supposed to look as good as I do, or do as much as I do, or breathe as well as I do.  They don't care about the fact that I get winded going up steps usually.  Hey, but she can still breathe!  Who cares if the walk to my office from my car was leaving me breathless for an hour?  She can still breathe even if it feels like she sucking air through a mattress!  I'm sorry, but that's NOT ok.  Feeling like you are going to DIE when you walk up the stairs, even if it isn't as bad as the person who can't even walk up the stairs cause they'd stop breathing, is NOT any way to live.  And I wish that these drs would get that.  Would they take it?  Would they be ok with limiting their activity so much rather than trying to treat the problem?? No, I don't think they would.  I don't think we should ever be asked to "settle."  I think there should always be a push to get to a better level, the BEST level possible.  If that is the best we can do, that's one thing.  But it isn't.  They aren't trying.  They aren't trying to understand how I am DIFFERENT from their other MG patients.  They aren't trying to understand that while my other symptoms may be mild, the lung involvement is REAL, is SCARY, and needs to be treated as a serious matter.