Since yesterday didn’t quite work out as I wanted I’m trying again today. Got my fur babies close. I haven’t worked out since Monday. Giving my body the break it needs. Hopefully I’ll be able to sleep more and the phone won’t ring all day like it did yesterday. This is all part of having MS and I understand that. It is a difficult part of the disease but I’m doing what I can. I’m a MS warrior like so…
Writing this from the comfort of my bed. I am hoping a day in bed recharged my batteries. I know it might not help but I am going to stay in bed anyway. Unfortunately I was woken up at 8am from my security booth with another aid appearing at my house. Made no sense and was severely aggravated by the mistake. After 10 phone calls the situation was handled but I had to be woken up to fix it all….
I’m just having a tough couple of days. I am just so tired and my body isn’t recovering yet. I hate this feeling but I can’t even complain. I haven’t felt like this in a long, long time when my energy is drained for so many days in a row. It is a horrible feeling but I do have the means now to make things easier for me. Yesterday I did manage to do my Turbo Jam Beachbody workout. I…
I have nothing left this week. I’m just drained of all my energy. No spoons left, no reserve and no choice. We are picking up my daughter’s new car this morning so I’m up, dressed and ready to go again. I am sure it will be at least an hour signing all the paperwork and driving myself home again. Tonight is a family dinner before she leaves for school. I need a down day, I need a few down days….
My next infusion is supposed to be in a few weeks for the full dosage of Rituxan. I called the infusion place that does the schedule for my medicine yesterday hoping to get a jump on things and avoid any issues. This time, for the first time, there shouldn’t be any problems. I haven’t had any insurance changes, Rituxan has already been approved from the last time and I’ve been getting my infusion with this place for a few years…
My poor daughter is also plagued with migraines and she had a terrible one yesterday. She was supposed to cover someone at work but couldn’t make it in. Her migraines are made worse by her cochlear implants. If she catches them in time and takes aspirin sometimes they could be avoided. She couldn’t yesterday. When this happens the only thing she could do is take off her Cochlear’s and sleep. The cochlear implants cause additional pressure to her head making…
I can’t imagine my life without this van. It was time to be in a wheelchair and I didn’t have the means to accomplish this. It took a long time and help from so many people. I still can’t thank them enough. I have a life again and I can go places without everyone worrying; how will I get in, will I be able to get there, will it be too much etc. This van wasn’t only great for me,…
I have to do bloodwork this morning. You think I’d be a lot less needle phobic with the amount of shots I’ve received over the years but I’m really not. I’ve from the earliest medicine for MS. I’ve been on Avonex, Betaseron, Rebif and even Copaxone. These are all medicines that required weekly or even daily shots that I had to learn to administer myself. For the first 12 years of my journey I had to do these. When Gilenya…
You might think that’s great you had no active lesions on your MRI, no new lesions either. Yes, it is but that is a Relapsing Remitting MS signifier that my main MS drug, Rituxan, is suppose to prevent. It is working which is definitely great. The reason I’m not celebrating is because this MRI result is only part of my picture with MS. There is another part, it is thought of as Secondary Progressive MS. Secondary progressive MS (SPMS) is…
July is ending today. I made it through the month. Only one more long month of summer to go and I should be good. It’s just these two months that are difficult for me the other 10 I can get through. However I’m still jealous of my little sister in San Francisco with that perfect mid 70’s weather year round. That would be perfect. Anyway I can celebrate successfully navigating another month of July. This was an uneventful month which…
