IV Steroids my tips

Isn't it amazing that we don't always know just how bad we have been feeling until we feel better?  It  seems to be my experience,that only until after a round of IV Steroids I can then realize the severity of my symptoms.  I continue to plug along with my life and make small adjustments as needed.  I don't always recognize right away that my short temper, or slower pace is more than anything that just normal daily fatigue.   I tell myself the brain fog I experience when trying to read simple emails, or trying to decide what to make for dinner is just me getting older.

When I finally break down and go for the infusions relief is not immediate.  I actually end up feeling worse for several days following my last infusion. Crying, swollen glands,and severe mood swings are inevitable after an infusion of steroids for me. When I finally start to come down from the steroids and my system evens out, I am always surprised how good I feel.

I am not suggesting IV steroids for everyone.  We all need to find what is right for us.  IV steroids work for me so I am willing to put up with side effects a couple times a year.

If you do go the infusion route keep these things in mind:
 You may not feel better right away, in fact you may feel a bit worse.

 Swollen glands are painful, but normal.  I take ibuprofen to help.

 You will not make good decisions, so don't try.  You may think completely reorganizing all the kitchen cabinets is a fantastic idea, but it is not.  You will just end up on the floor crying, surround by every dish and food product you own.  Really.

Water. Water. Water.  Drink it, bath in it, listen to it trickle to sooth you.
Drink enough water to keep you peeing and it will help alleviate some of the bloating you may experience
My skin tends to be very painful to the  touch and a nice cool bath is very soothing.
Just the sound of water soothes my mind.  Use the sound in conjunction with meditation.

I try to find a quiet place to just hole up in for a day or so.  Everything sounds louder to me.  I stay away from TV.

When you do start feeling better be careful not to overdo, but try to get back to enjoying your life.

This disease steals much from us, but we can take a little back every time we decide to live the best life we can. 

Dropped the ball...again

Well, I dropped the ball once again.  My oldest progeny had an appointment for her swim physical and I completely spaced on it so she missed the appointment.  It was last Monday, so I have to scramble and  get her in ASAP so she doesn't become ineligible.  I hate this! I really do.  I feel so off all the time. I can't keep track of the simplest things anymore.  I had the appointment written on the calendar, but the calendar is so covered in my "notes" that I missed it.  I feel like I'm always trying to play catch up. I'm tired.  I'm frustrated.  I'm sick of trying to speak and having nonsense come out or worse yet, trying to find the words that won't come and just feeling foolish. 

I have discussed all this with my doctor, and as of my last MRI I know I do have active lesions, but the knowing does nothing to relieve the feeling of inadequateness -is that even a word?- that I have. 

I know I am very fortunate to still be able to drive, walk and get around, but those are the things people see.  Sure I can get Dancy Daughter to the studio five nights a week, and I can make sure I can get Swimmer Girl to the pool everyday, but that seems to be the extent of my skill level right now.

I have been really teary for the last couple weeks, actually almost a month now.  I don't know how to discuss this with anyone so I just keep it on the down low and deal.  I don't want to burden my number one man with it, he has so much going on at the base right now, and I honestly don't have any friends left.  I have successfully pushed them all away over the years and now I sit here boohooing over something that is my own fault.
 I don't know, maybe it's the weather, maybe I'm just nuts.  I'll just keep taking my Cymbalta- Really, I have no choice because one you start that demon formed medication you can't stop-and keep going.

Zippin` and Zappin`

This was a bit of a rough weekend for me.  I was having some of the more annoying symptoms of Multiple Sclerosis.  The dreaded electrical shocks.  *shudder* For anyone who is reading this and not sure of what I am talking about I'll try to explain.

The sensation for me is much like I am constantly being surprised.  My body tenses and my heart feels like it is skipping beats.  My face and extremities are tingly and feel like they are in motion even when I am sitting. I feel zips and zaps, but imagine a prolonged static electrical zap.  Any small movement makes the sensation all the more intense to the point where I feel as if I can not breath properly, at that point I have to calm myself or risk the chance of having a panic attack.  Sometimes it feels as is if I am falling.  Now imagine all this going on for days with no real relief. Add to it the constant numbness in my right side, speech problems, and  you can see why I was a teary eyed mess.  Well that and the fact my 16 year old is in NYC for the week with her school band.  I miss her.

 I truly hate when the monster rears its ugly head like this.  I have things to do, yo!

Today is not as bad, but I still feel the sensations although not as intensely.   I'm going to try to get a run in and see if I feel any better, but right now I do not have high hopes.  Uggggghhhh.

These are the reasons this disease is so hard to take for many of us.  We go along in our life for weeks sometimes even months not being completely symptom free, but enough that life feels normal and then BOOM, "HERE'S JOHNNY!". It's always at a very inopportune time, again I have things to do.

UPDATE: I went for a very cold run.  2.5 miles after posting this, and I do feel a bit better I still have a weird feeling.  Meh....dreading making "the call".....
to be continued...