After I spent hours on the phone getting my van taken care of, they finally came to tow it to a place on Long Island instead of New Jersey. I was mentally exhausted. As I am coming back into my condo the phone is ringing. It was my infusion place. The authorization for Rituxan isn’t going to be overnight and my infusion scheduled for Wednesday was canceled. All I could do was laugh. One problem solved another one starts. This…
So my infusion is coming up and I’m waiting on authorization. I’m switching back to Rituxan hopefully because I personally feel slightly safer on the drug. However I can only imagine what this will do with the authorization of the drug. Ironically my last infusion my pharmacy had Rituxan on the approved list but not Ocrevus. It took my a while to get Ocrevus approved. Now that I’m switching again to a drug that is technically not approved for MS…
I went to my neurologist this morning for a wheelchair assessment appointment. I have an electric wheelchair plus my travel scooter already. My electric wheelchair isn’t in the greatest shape. I bought it online and it is so much better than the scooter but it doesn’t go exactly straight. It goes to the left. I’ve learned how to navigate with this issue but it is slightly annoying. The tires also need some help. Needless to say that’s why I was…
I received a call early in the morning that my aid’s son was sick she wouldn’t be making it to me for the day. However, yesterday was mahjong and I wanted to go. This is why I got a handicap van for my independence, right? So I decided I was going to go. I was more worried about getting out of my house without my dogs running out the door on me. I decided to be very proactive. My word…
Yesterday I wrote about the seriousness of weakened chest muscles and multiple sclerosis I’m scared of this MS symptom. I haven’t seen my doctor yet but I received some advice from people that I thought I’d share that would also help. Purchase an Incentive Spirometer . There are many types of spirometers but this one is used to help increase patients lung function. 2. A humidifier A smart idea to keep moisture in the air to keep congestion as loose…
I’ve written about this before but it happened again yesterday and it really scared me. https://multipleexperiences.org/2017/01/23/multiple-sclerosis-serious-symptoms-respitory-issues/ I woke up not feeling well. I had this heavy feeling in my chest. Not like the MS hug symptom which is the tightening feeling through your chest like congestion, simple congestion in my chest. I just couldn’t produce a cough that would move the mucus up and out. I spent the whole day trying to cough, using my Doterra oils and drinking tea…
Not much to say because I haven’t done much. However because I haven’t done much I could say that I feel pretty good. I’ve worked out every morning doing my little Cize videos from Beachbody https://www.beachbody.com/product/about_us/executive_team.do. After that I do A course miracles followed by a meditation and then I write my blog. My afternoons of been really quiet because my car has been by my mom and my stepdad getting ready to be taken into Honda and returned. I…
I got a call from the finance manager yesterday going over a couple of details and she said they were delivering the van this Wednesday, like the day after today. WHAT??? They haven’t received any payments from my grants and we aren’t planning on laying that money out. “They leave it on their accounts receivable side, it’s not a problem”. As wonderful as this is for me, other than the grant from Nova, they didn’t even ask me for me…
I fell on Friday and slammed my head into one of my hangings on my lower cabinets. I was stunned for a few seconds when it happened. Everyone said “where was your aid?” She was right in front of me but it is difficult to catch someone when they are falling and she wasn’t close enough anyway. Technically she isn’t even supposed to catch me as per her agency. That part I can’t understand but she does anyway. My head…
I received word this morning: I am pleased to inform you that your application has been selected by the committee for funding. Please see the attached letter for details and instructions for fulfillment of this grant. I was approved for the last grant for my handicap van. This was truly the difference between the van being still very difficult to pay for each month and being affordable. I have never been so nervous opening an email. I never doubted that…
