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Recovering At Home

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Saturday 08/02/25 is 2 weeks I have been recovering at home. I have never been in the hospital for more than four days. Once in 2007 for an MRSA infection that my PCP inflected on me from an in office procedure, and now in 2025 for 11 days with a UTI and kidney infection that attacked my MS lesions. I have been sleeping a lot since I’ve been home. I am not sure if that is normal, but I think yes since my body has been through the wringer. I am anxious to get back to my everyday routine that I know and have been doing for a long time. Cooking, doing art, one-on-one coaching, and writing my cookbook. I am not taking the cookbook seriously; I am not sure why. Lost interest I feel.

I am getting ready to do an art project for a friend. I made her an accordion junk journal and the journal needs a storage box to put the journal in. Right now, I am planning the colors and pictures to complete it. Maybe by then I will get my motivation back. Thinking a lot about the hospital stay. I have a bad habit of thinking about the “what-ifs”. These thoughts scare me because my sister and I do not have a plan in place if something happens to one of us. I think Karen will be ok, but for me it is a little more complicated. My biggest fear is being dumped in a nursing home for the rest if my life because I have MS and I no longer walk and am wheelchair bound. What will happen to our things, Louie her cat, and other thoughts have come up.

I am starting to have anxiety as I am writing this. I guess I am not ready to figure this out, but I know I need to. I do not have any solutions and I know it is something most people who are in the same predictment as me go through this. Having long term care costs a lot of money too. I am on SSDI so my income is very limited. Another worry is will my body deteriorate over time. What will happen then? I read about other MS’rs and their stories do not help put me at ease.

Research Funding Cut

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Yesterday I received an email from the National Multiple Sclerosis Society indicating funding for research on MS has been suspended by the Republican party.

WARNING LOTS OF ANGER IN THIS POST. IF YOU DO NOT WANT TO KNOW, DO NOT CONTINUE!

Here is a section of the article: “National Multiple Sclerosis Society learned the Multiple Sclerosis Research Program (MSRP) has been unfunded for fiscal year 25. The Society was shared a directive from Congressional Appropriations Committees’ Defense Subcommittee Chairman, Sen. Mitch McConnell and Rep. Ken Calvert, regarding Project Level Adjustments to the Congressionally Directed Medical Research Program (CDMRP) as a result of the Continuing Resolution passed on March 14 by Congress”. The link tom the article: https://www.nationalmssociety.org/news-and-magazine/news/funding-congressional-directed-medical

MS research is a never-ending long process and since my diagnosis from 1991 to now, there still is no cure for or why MS happens. I posted a comment in Facebook last night that started a shit post storm with one person who does not have MS, defending the republican party, and I know for a fact, is a Trump voter and is for him making all these cuts drastically. Let’s call her BIMBO-IGNORANT.   Suppose they cut research funding for a disease called POTS, Postural Orthostatic Tachycardia Syndrome, which her family member has. I bet she would be singing octaves of cuss words about this devasting cut. How is this different from MS? She then goes on and on about how the government works in terms of executive orders and how congress must vote to pass, in other words, droning on and on about Trump and vomiting words dripping in baby diarrhea yellow-green, smelly, disgusting BLAH, BLAH, BLAH’s. She ASSUMED I do not know how the government works.

The article clearly stated the funds have been cut effective March 14, 2025.

What is BIMBO-IGNORANT’S MO- which was proven to me last night “Presumptuous, acting without due respect; arrogant”! I totally disagreed with her due to the fact she knows nothing about MS or me, is a Republican, voted for this imbecile proudly, and embarrassment to the USA, and tried to explain the government policies, which he so blatantly ignores, argues, whines, does what he wants and why would he abide by congress voting? She’s frigging delusional.

Another MS colleague “posted” to me to see the article. And guess what, BIMBO-IGNORANT comments and posts on where to find the article. Mind you this imbecile asshat butts her ignorant two cents into my business and speaks on my behalf. She never gave a shit before on any of my posts, until yesterday. This alone infuriates me. Why? I’m still processing this. And I was honestly annoyed, if you have an incurable disease wouldn’t you want to know everything that is going on about MS, register yourself in groups that are at a national level just to see what’s going on? I was like thinking, seriously you’re asking me. The same person says, I don’t get into politics. Well, I don’t get into politics either, but I found out about the funding cuts in an email yesterday that was sent to me. Why aren’t you getting emails? IMO, stay on top of things related to your disease so you know instead of being ignorant. Well, this is political, it’s funding that was cut for research for a cure. SMH.

This is strike 2 this week for me regarding people and MS. Just waiting for the 3rd strike. If you want to know about the disease and how it has affected my life, ASK ME, DO NOT ASSUME! First, I was told by someone who I thought understood my struggles with MS told me I was assuming that there is nothing to help with the fatigue and now being told by another person who knows NOTHING about MS or me and proceeds to dominate my post on FB about the approved and voted cuts and ASSUMING I do not understand. Her feelings got hurt(ed) boohoo, because I did not agree with her explanations. Why would the President that wreaks HAVOC in the USA in the last 2 months follow the law? A convicted felon and sexual predator that makes up his own law and best of all, stupid people voted for him!