Chronicles of Life with Multiple Sclerosis
Currently, in bed, with a starbucks. Only typical. (:
Health wise: I’m better than I was before my last hospital visit last week however not as good as I was when I left rehab over two weeks ago.
So Im filled with mixed feelings: I’m happy I’m better but rather discouraged I have regressed…again.
My walking is what seems to be the least affected. I still get around the house with my arm crutches and wheel chair for outside visits. My legs will buckle or I’ll have a little limp but this is I guess to be the new “normal”.
My arms/fine motor skills are dependent on factors, such as how tired I am, if I’ve taken my meds, etc. It is rather frustrating when you tell your arm “reach for this” and the brain just can’t get the message there. I find myself having to come up with clever ways to do normal things. Example: text mom to help. (: (Love you mom!) I also am still experiencing quite a lot of tremors in my hands when not in “resting” position. This makes it challenging to eat, write, fold clothes, life. But I see it getting better daily.
My speech is probably where I’ve noticed the least progress. One of the things I have always loved to do (since I was about 1) has been talking. To not have that ability is quite challenging. The upside, sparkle side of it is though it has turned on my listening skills. Listening to music, to others, to mother earth, to God, to happy vibes, to whatever it is around me. This I am thankful for.
Fatigue. Let’s just say I slept 14 hours last night. We will leave it at that.
Cognitive. I have noticed change in my short term memory but this is only natural due to where the lesion is as well as due to adjusting to medications. This has been improving.
MS is a challenging disease for everyone that has it. But for me, what has been most challenging is its unpredictability. I have no idea how I’ll feel in an hour, 10 minutes, next week, next month. I’m a planner. Having your life be so “unplanned” is a huge burden for me.
Now, do I sparkle? Well, of course. (: My spirits are high. I am thankful that I can see progress daily that shows improvement. I am thankful I have one of the best MS doctors looking out for me as a patient. I am thankful for the MS Society and all they are doing for me. I am thankful for so many things.
I am thankful I can still sparkle. Which is hard for a lot of people who have chronic diseases. I contribute it all to your support, in whatever way you share it!!
So thank you, please keep it up, and know that I have my good friend St. Therese looking out for you too (all my readers). Religious or not, having people in high places sending you good vibes cant be a bad thing. (:
Have a glorious day, hope for all those that have MS and HOPE FOR A CURE!!!
PS: side note: send some support to my little brother as well. He is at summer camp and we just learned last night that he has second degree burns on his foot due to boiling water being spilled. poor kid. his spirits are high and doctors say its healing nicely!
“when it rains it pours. but you wait and hope for that rainbow”
I understand it gets busy and I’m not your only patient, but I NEED THIS REFERRAL!! it’s been three weeks of phone calls, voice mails, and a fax… so when I call to follow up, please be nice. It may be annoying, but I need this from you… and the faster it gets done, the longer I’ll leave you alone.
THIS times a million. we’re humans… the illness doesn’t seem to care what works for me time wise and if you’re office is extra busy that day. sorry, so cut us some slack.
I’m still alive.. sorta
remember when I used to make a lot of text posts
Taken with Instagram
yep. Fuck a bunch of that.
it failed me too, as did Rebif & tysabri, Next up (After 3 months of pre testing?) Gilenya. woo. so far its not my favorite either.
can you make some MS meds that taste like flintstone vitamins please?