Blah. Today was a good day. Despite everything including the sun working against me. Didn’t tie up all the loose ends but, worked out the tangle in the strings a bit.
Went to one court, ended up having to go to another court four blocks away, they said. We ended up walking and going back and forth a few times before I had to be put in a seat at a Filipino bakery/sweet shop. Got the strangest, yet most amazing, milk shake, crushed ice type drink. I don’t know what the hell was in it. It looked like milk, crushed ice, and then it got weird with sunflower seeds, dulce de leche, cubes of, what I think, was Jello, BEANS!, and some unclassified bean-sprout looking thing. I don’t want to dwell on it, except to convince myself it tasted good and refreshed me.
The walking, hills, and shitty sidewalks of Jersey City did NOT help with my MS. My HMO is still waiting to “pre-approve” my Copaxone, which I was on for the last 6 months. It’s always something new with these HMOs! I arrived late for my neurologist visit and with a referral from before I switched HMOs, so that Shea could continue seeing his doctor, and was told it was no good PLUS I was 30 minutes late already thanks to a flub on the appointment card. So I was rescheduled without seeing my neuro for A MONTH later.
Hopefully, I will get my meds soon. BEFORE I end up in the hospital with an exacerbation, which I’m sure won’t be covered by my HMO because I didn’t get a referral before collapsing. Yet, somehow I’m still happy and upbeat. It’s the only way to be. Not worth seething over and dwelling on every set back. I’m not being buried, I’m being planted and like a tiny seed I’ll take root and rise above it all.
Be Well! Stay positive!
If you handle your situation wrong. My dad would be a goner. But, you can’t dwell on being sick, and you need to surround yourself with positive people. People who support you when your feeling well and are there for you when you’re doing poorly. There’s nothing worse than being on remission having someone around saying you should be using a cane or wheelchair, when you are actually ok to walk. The same goes when you’re in an exacerbation and they tell you you’re just not trying. You have to find the right type of people. And explain to your family and friends.
Be upbeat and positive. You’re not the only one suffering with your MS. You may be the only one that HAS it but, everyone around you that truly cares about you is suffering along with you. Try to keep that in mind when you can’t do what you wanted and you’re frustrated and angry with the world. DON’T TAKE IT OUT ON THEM. I’m sure that, like my dad who is awful at dealing with or seeing me in an exacerbation, some people around you would really like to switch places with you so they wouldn’t have to watch you suffer. No one is enjoying your Multiple Sclerosis….except maybe the pharmaceutical companies.
And try and spread some awareness on MS. It may seem like everyone has MS when you are involved with or suffering with MS. The reality is on about 2.5 million people IN THE WORLD have this disease and only 400,000 in the U.S. and about 75,000 in Canada. So guess what? Multiple Sclerosis IS A RARE DISORDER. And no one really knows about it, especially people without it. There are no telethons, no “Are you living with MS?” commercials, No billboards. It’s just us and the various MS Societies. So educate yourself and when someone asks you about MS or even says something stupid like “Oh my god…how long do you have to live?” you’ll be able to educate them rather than come home and rant about it or post on an MS board about how ignorant they are.
If you’d like to help spread awareness please donate to the National Multiple Sclerosis Society. They are funding education, support, and research on MS. Me and my family and friends will be doing WalkMS on April 10th, 2011 at Jersey City, NJ. Come down and cheer us on. And please show you support.
Had an awesome day out with my son, Shea, today. Spent most of the afternoon at Chuck E Cheese, checking out their new assortment of games. Shea was a little nervous when he first saw Chuck roaming around the arcade but, he warmed up to him pretty quick and even gave him a high five.
After Chuck E Cheese’s I went to Walmart and spent a few hours shopping without the use of a mobility scooter. Anyone who’s read this blog before knows how much of an accomplishment that is. I bought a humidifier for my room, to keep Shea from coughing at night, a set of the new Dr.Scholl’s orthopedic inserts. They had the machine at Walmart they scans your feet and recommends the appropriate insert for your foot type. They really do make walking feel better.
After I dragged myself through the finish line at Walmart, I got home and quickly put them in my shoes and they REALLY WORK. Even with my feet aching from the hours spent shopping on them I felt almost immediate relief and my back didn’t tinge with each step, as usual. I love those inserts!
My marathon day didn’t end there! I spent the rest of the night cleaning out they bathroom, kitchen, Shea’s room and some of the living room. I had about 5 bags of garbage in those rooms. Granted it was mostly items Shea had broken, stopped playing with, or had just beaten up and gotten too old for. I have to thank Mandee for the thorough job in Shea’s room and the bathroom especially. Buying every Thomas and Friends train engine we could find on eBay. About 17 trains so far with 16 pending snipes. LOL.
Finally time to try and get some sleep. Tomorrow…SHEA’S FIRST VISIT TO THE DENTIST!!!!!!!!!!!
Day 138 – Left Hip
The post-injection welts are starting to be larger and more painful. I have a few painful injection sites, even after a few weeks. The paperwork that came with the Copaxone did point out that some of the reactions would either manifest or get worse over time.
It’s been a good few weeks for me too. I finally received my Notice Of Award from Social Security Disability. My doctors and theirs found me Permanently Disabled With Low Chance Of Recovery. So my condition will be reviewed every 3 years.
I have been feeling slight improvement in my overall fatigue level and walking. I haven’t used the mobility buggy at Shop Rite, or shopping trips, in a while now. I registered for the MS Walk in 2011. After a few days of walking with me and offering encouragement, my brother offered to walk with me. And shortly after we decided to start a team for the walk.
I’m hoping that all my local friends will join or support my team, Orange You Glad We’re Walking, and walk with me and help me fund-raise for MS research.
It’s been a remarkable few years in MS medical research. The first medication specifically for help with walking was approved this year, Ampyra. The first oral disease modifying drug Galinya was also approved this year. I’ve heard and read about some severe side effects with that one and the needles with Copaxone don’t really bother me so, I don’t think I’ll be pushing to have that prescribed to me until its been on the market for a while. I’m hoping the research and FDA applications continue at the pace they have been in the years since I was diagnosed. Well it’s 6:30am, I should probably stop writing and start sleeping.
Hey everyone. If you’d like to be part of the team at the MS Walk 2011, in
Jersey City, NJ, on April 10th, please click this link and register.
Thank you very much from the bottom of my heart. Be well.