Today my van is getting delivered back to me. It seems that the circuit breakers under the floor were water logged. I can’t explain how but the switches needed to be replaced. They kept the car for an extra day testing everything out and hopefully this won’t be a problem again. I am doing my Rituxan infusion later this evening but I am doing at home. That makes a five plus hour infusion so much better. I get to be…
It was actually approved for my Rituxan infusion. I will be taking it like the Ocrevus and in a full dosage. I know that my doctor has lowered the amount of steroids I need to take prior to the infusion and I will be taking 250mg. Still a high dosage considering prednisone, the oral steroid pill most people take, is normally issued in a step down pack where the highest dosage is a 10mg pill 6 times a day. Just…
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…
I can’t make this sh@t up. I go to my car yesterday and press the button and the door opens and ramp comes down as normal. I go into my van and press the button to close and my ramp goes in but the door doesn’t shut. So I try to press the button again and now the ramp won’t come out. Well after several attempts of pushing each of the five buttons that operate the door/ramp my aid and…
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…
A storm was coming expecting snowfalls of 4-8 inches. I was excited to have at least one snow storm this winter even though it housebounds me. It is very hard to navigate outside with mounds of snow and ice. It is hard to walk if you actually have balance, which I do not. No walker in the world will assist me on snow and ice. My scooter also can prove difficult. It’s like being stuck in the mud in the…
