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Tag: ms over 20 years

Summer heat hibernation and my own multiple sclerosis realization

Summer heat hibernation and my own multiple sclerosis realization

The quarantine is starting to lift yet this is the weather I start my hibernation. It’s starting to warm up and that means trouble for me and multiple sclerosis. Not just me, many of us. Between 60% and 80% of people with MS find that heat can cause their symptoms to worsen. This might involve a build up of fatigue, blurred vision, loss of balance or a worsening of cognitive symptoms such as concentration or memory. https://www.mstrust.org.uk/a-z/temperaturesensitivity I missed all my good months to…

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It is not easy having multiple sclerosis

It is not easy having multiple sclerosis

I had another rough night. This time I was alone. My daughter has been home for two months and the one night she’s out I really needed her. Unfortunately in my exhausted state, I fell. Not only did I fall but I was in a very bad spot. I was now exhausted and helpless. Not a good place to be. I spent a lot of time and energy maneuvering myself into a position of hope. Hope that I could possibly…

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How are you feeling? The truth about Parethesia

How are you feeling? The truth about Parethesia

When you live with a chronic illness I think you start to hate that question. People ask it all the time but they really don’t want the actual answer. Trust me, we very rarely actually respond with the truth. My go to answer is I’m doing ok. I can’t say good anymore because that is just too much of a stretch. I just answer with a vague I’m doing ok and change the subject, how are you doing? What is…

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The strange MS symptoms back again

The strange MS symptoms back again

I haven’t talked about my MS in so long. It hasn’t been too bad, thankfully. I did end up on the floor after I worked out in the evening. Totally Rocked This I had this great work out but it did make me extremely tired and my recovery wasn’t quite on point. So transferring into my wheelchair didn’t go so well. I didn’t panic, or cry. It took me a little bit but I eventually got myself up and I…

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Hot, sweaty, cold and warm

Hot, sweaty, cold and warm

I’ve had so many blogs about this topic. Regulating my body temperature is not going well these days. It can be very frustrating. The sweating happens a lot after i eat. It is because my food is hot. The hot food causes my body temperature to rise and then I start sweating. Really makes no sense. Most normal people eat a hot meal and don’t have any issues. Not me, I eat, I get overheated. WTF!!! It happens all the…

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I’m not disabled, I’m mom

I’m not disabled, I’m mom

I did well yesterday My words are my actions. I managed to use the walker until after 2pm. I completed 3 sets of 10 squats but I can admit I pulled myself up on the last few. I was done!!! I’m happy to say that I recovered and had strength to get myself up into my bed without assistance and without lowering the bed to the flat position. I was proud of myself. My daughter comes into my room every…

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My words are my actions

My words are my actions

One thing I can say about myself is I’m not a slacker. If I say I’m going to do something, I’m going to do it. I wrote about my weakness in my legs the other day My muscles are getting weaker. In the blog I realized I had to do something. So I first thought on safety. I can’t fatigue myself to the point I can’t transfer. My daughter has been so helpful when my aid isn’t around but she’s…

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My multiple sclerosis spasms

My multiple sclerosis spasms

My spasms have been extremely annoying lately. I have a few different types and it depends what it hitting when. My back has probably been the most frequent. It starts with this warm feeling that spreads across my back and reaches from left to right. It continues to my right hand where it paralyzed it for a second. Then I have the one in right hamstring. This one you can feel building up. It’s like you welcome the spasm when…

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Rituxan infusion successful

Rituxan infusion successful

I’m happy to report that I have no blisters today. I had three little red marks last night that looked almost like welts. This morning I only saw one. I can’t even begin to tell you the relief that was for me. I will be able to continue Rituxan until something better comes along. That isn’t the greatest statement but it is better than the alternative of putting me on a drug that might not work for me. The infusion…

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Another nursing evaluation

Another nursing evaluation

I had a nurse evaluation yesterday for the agency. Nothing shocking, mostly paperwork stuff. My medications were listed for the dosage and times I take them. I’m taking 9 different medications at 48 years old. That’s a lot of pills. If you include the vitamins it’s 17. A crazy number yet they all serve a purpose and that’s what the evaluator and I were discussing. Most I take at night because they cause drowsiness so I got the warning about…

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