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”
This girl lives in my town and is trying to bring awareness to a worthwhile cause. Please watch this video and pass it on to friends and family. Being a nurse, I’ve seen what MS does to not only the person diagnosed with it but also to their family and friends. I hope one day soon they find a cure.
I was diagnosed with Ulcerative Colitis when I was 15 years old. It was Easter Sunday morning, many years ago. I woke up with horrific abdominal pain and noticed I was lying in blood. I was scared out of my mind! My parents had no idea what was happening to me! Neither did my two brothers (who were 14 and 10 at the time.) I was in more pain than I’d ever known!! My parents took me to the local Emergency Room. I was admitted, and days later I was diagnosed.
Now that I look back, I see how this impacted everyone around me. My parents suddenly had a very sick child to care for, as well as two young boys. The lives of my family members changed that Easter Sunday, not just mine.
I was in the hospital so often, sometimes for weeks at a time. It disrupted my entire family’s schedule. My brother’s weren’t getting the attention they would have gotten from our parents, had I not been sick. Everyone was focused on me & my brothers were often forgotten. Now, my parents had to work, take care of the house, take care of my brothers, AND come into the hospital every day to visit me! That’s a lot for any family to handle.
I was unaware of the impact that my being sick had on everyone. I was just trying to get through each day.
All of us who are chronically ill, have family members who suffer along with us. There’s nothing we can do about that. We should NOT feel guilty, and NOT blame ourselves. It is out of our control. The best we can do is to include them, and not shut them out, and keep communication open. Keep everyone in the loop. They care about us and want to be of some help. They want to be involved, so we have to let them.
Do you have any similar experiences?
I don’t even fucking care if the government or what ever the fuck it is comes after me. This is so messed up. If someone is deathly ill with a diseases like Cancer, Multiple Sclerosis, etc, why the fuck wouldn’t you give them the health insurance they need? At the very fucking least a nurse to come help them out?! Even once, twice a week to help give their families the peace of mind for one or two days that someone is checking in a taking care of them. Sorry, but if you’re too fucking concerned about MONEY, think of how these people must feel. Spending around $100 for medication that is supposed to help with pain, and distress. What happens when they can’t fucking afford the medication? OH THAT’S FUCKING RIGHT! They get rushed to the fucking hospital! Guess who now has a $600+ medical bill that they CAN’T FUCKING PAY? As if we don’t have enough to worry about, now there’s the worry of money. As if these people don’t have CHILDREN to take care of, now they have to take money out of funds that SHOULD go towards helping their kids into/through college, SHOULD help their kids get the medication they need, SHOULD help their kids when they need to go to the doctors. Fuck.
This country is fucking fucked up. Economically, we’re all fucked over, the very least that can happen is help out out the people who are going to die with in the next year.
Why can’t you do the goddamn right thing and help these people out? OH RIGHT—- IT’S ALL ABOUT THE FUCKING MONEY IN THIS COUNTRY. Fuck you.