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Tag: ms over 10 years

My boo boo feet

My boo boo feet

It happened again. I got blisters on my pinky toes and wearing shoes became quite an issue. It started about a month ago where my shoes started rubbing and I knew it was going to be a problem. Guess what, it was. I’ve been wearing the same sneakers for a long time never had a problem and all of a sudden they’ve become tight. The truth is I even know why. I didn’t take my water pill for a couple…

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Accepting this stage of my multiple sclerosis

Accepting this stage of my multiple sclerosis

I had a good weekend. I got my 6 hour online drivers insurance reduction course completed on Saturday. Had a really nice birthday brunch with my friend yesterday. Even consumed too many Bloody Mary and was slightly drunk. I managed to not only have zero falls this weekend, I also had zero bladder accidents. I stayed up past 9pm Friday and Saturday night and still got up my normal times in the morning. I think it is safe to say…

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Overwhelmed with gratitude

Overwhelmed with gratitude

I’ve shared numerous times how I started a Go Fund Me for help getting a handicap van. I had some donations but it wasn’t moving most days. Since my birthday is coming up tomorrow I got something from Facebook about starting a fundraiser, so I did. I am so overwhelmed by the people that have donated to my fund. People I went to high school with, college, my family, my sorority sisters, my work friends over the years and friends…

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Getting back into routine

Getting back into routine

It’s been a while, seems like months, but it’s only been a few weeks. I am finally getting back into my weekly routine. I’ve said this many times in my blogs, I need the stability of the routine. It helps me function and cope in each given week. When I’m out of routine I feel a little lost. My MS may even act up and become cumbersome. Might be part of the reason for my lethargic ways these last few…

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Increased antidepressant prescription

Increased antidepressant prescription

Snap out of it!!! I was telling myself that for a week. I spent a week in pjs because I didn’t have the energy to get up and get dressed. I’ve been lethargic and tired and just morose. I was off of the steroids and knew it could be a side effect but it was bad. I saw the specialist that Tuesday and when we got to the list of my medication and Prozac she asked for the very first…

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Trying to get funding for a disability van

Trying to get funding for a disability van

I have to admit, I never expected the handicap vehicle to be quite so much money. I’m glad at least when I started this journey I did start at the dealership first. I have a foundation from multiple sclerosis that is helping me but they certainly didn’t have enough funds for the entire van, or anywhere near it. The multiple sclerosis foundation only helps with the purchase of the conversion and they certainly don’t cover the full cost. I’ve done…

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Rituxan instead of Ocrevus

Rituxan instead of Ocrevus

Going to see my neurologist, on my mind was questions of whether to stay on Ocrevus. I felt if I was still declining so much why be on a drug that can come with some serious side effects. Was the pros still out weighing the cons. I had two other drugs in mind Siponimod and Ibudilast. Both drugs are coming out for secondary progressive. My neuro shot down Siponimod because I was on Gilyenia and it is very similar to…

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My neurological tests don’t show my ms progression, why?

My neurological tests don’t show my ms progression, why?

It is tough. I go to the doctor and my neurological tests aren’t so bad from my last visit. My timed walking was increased by only 2 seconds. No big deal. My range of motion was pretty much the same range as it was last visit. My MRI shows no activity. Yet I’m worse. Everyone who is involved in my daily life knows I’m worse. It’s frustrating. It’s not like my doctor doesn’t believe me. It’s not like my doctor…

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Is Ocrevus still right for me?

Is Ocrevus still right for me?

I have an appointment tomorrow morning in NYC with my MS specialist. I’m coming off a 3 day round of steroids to see if it was at all possible I could be having some type of relapse. I personally didn’t believe that’s what was happening, however I believe steroids can you give me a little bump up in the energy. My thought going into tomorrow is if I’m still deteriorating so much, why am I taking such a heavy duty…

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Donations greatly appreciated

Donations greatly appreciated

I’m Jamie. I was diagnosed with Multiple Sclerosis in 1998. I have been lucky that I’ve been able to be on my feet for many years but my time to be in the wheelchair is here. I have been a single mom since my daughter was 7. She was born with a progressive hearing loss. She received bilateral cochlear implants. I dedicated most of my years to getting her the help she needed in school both academically and socially. My…

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