Tag Archives: writing

Life Changes

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My sister and I moved to Florida from South Carolina for a job that she accepted in March of 2025. After a few months, Karen realized she was so unhappy and stressed from the job and suddenly was let go on my birthday week in October. This was a huge shock because Karen is very good at what she does as an automotive industry controller. This unexpected life change does play havoc on emotions, mental health, and becomes extremely stressful when looking for new employment. For me, I have learned how to manage my stress levels through art and basically rest. I did not want to have a massive flareup. After a couple of weeks trying to figure things out, she contacted her previous employer in SC and was happily hired back. Thank God for this. So… we are moving, again.

When we made the announcement on Facebook to our family and friends there were some comments I struggled with. One of the things I have learned years ago with a chronic disease is to NEVER compare your chronic disease to mine. They are VERY different. The symptoms and how the disease affects your body are never the same as another person. It does not matter if it’s a broken bone, replacing something, cancer, a different autoimmune disease, fatigue, food issues, medications, mental health, just everything in general. I do not make these comparisons with other people with surgery related things, health diseases diagnosis, or chronic conditions; it is very disrespectful to them, extremely rude and often the comparisons are 99.9-3/4% WRONG. When it is done to me, I become agitated and annoyed. I want to be nasty to people, but I am not that way. Be kind, Pam. Be kind.

Instead of just saying, hope things will move smoothly, can we come down and help you move, is there anything we can help with? How are you feeling after a long time of not hearing from you, so excited for your new chapter, it is always the negative comments. I often think to myself, how terrible you think of me this way. I am an adult diagnosed with MS in 1991 and have been living with this disease for 34 years, who would know better than anyone my body quirks. I appreciate you worrying over my MS life struggles, can dos and don’ts, but maybe text or email me privately your concerns, this would be more respected by me and a lot more appropriate. Better yet, congratulate Karen on her decision to go back to her former job and the fact they appreciated her and showed that to her when she showed up that day. Life is difficult, quit making it more difficult.

Karen found a home that is 100% HC accessible and ADA compliant. The best part of it all is the wheel in shower. After 3 years of sponge baths and using body wipes, I am looking forward to my shower. This is my bathroom.

We will be moving shortly. Happy Holidays to you all. May you have the best of everything in the new year, 2026. Life is hard, be kind to others always.

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.

Hospital Stay July 2025

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I was in the hospital for eleven days. Longest I have ever stayed. My last hospital stay was in July 2007 from an MRSA infection caused by my PCP cutting through a lump underneath my arm causing a massive infection. This time was from a serious UTI and kidney infection that attacked my dormant MS lesions causing a flareup. The first few days I was completely out of it, slept so much and was given a lot of antibiotics intravenously. I think towards the weekend I started to feel better. There are some things that are not often discussed among people that have been hospitalized. Bathroom issues, mobility issues, nurses that are not very friendly and sometimes scary looking.

The doctor team at the Mayo clinic was awesome, very thorough with their explanations and tests. The MRI results was good news. No new lesions showing anywhere which is amazing for 33 years of having MS. Asked if I would walk again, the answer was grim. Not likely. Trauma experienced from people where I used to live before moving back home to Michigan (relationship and Deaf community) really wreaked havoc on my body. I am in a wheelchair for life, unless there is some cure to help MS patients. I still have a tiny bit of hope of proving everyone wrong, but after this recent hospital stay, I can see how bad the spine and left side is useless in many ways. Hard truth.

One of the things that was extremely hard on me was the poo and pee cleanup. No one talks about that. It is a hard reality if you are bedridden. Nurses physically clean up all the private areas on your body – rectum and butt where the urine lays while lying in the hospital bed. Hospital beds are designed very poorly. There is no way to go to the bathroom while lying in bed unless sitting on a bed pan which is extremely painful or just go while lying there. It is a humbling experience that you do not understand unless you have gone through it. I appreciate the limited mobility I have now to use the toilet privately at home. Very mortifying and humbling all at once. To this day I don’t know if the nurses were commenting while cleaning me up as I am Deaf. I hope not as I was already extremely uncomfortable.

My hospital stay has me doing some major thinking. Nursing homes and being under someone’s care. I become very emotional about this because my independence is gone in many ways. As I get older what will the mobility be like. The horrors of nursing home care constantly wreak havoc on my peace. Need to start developing plans now as I do not wish to be a burden on my sister.

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!

Am I A Bad Person?

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A lot has been going on lately. More recent is that my sister was hired for another job in Florida. Twenty-four years after leaving Florida to care for my mother who was diagnosed with salivary gland cancer, I am going home.

Florida is where I truly grew and healed some as a person. Life struggles continued from leaving the family and farm in Michigan breaking away from toxicity and abuse from 2 family members to live with my best friend at the time to her mentally abusive family. I was desperate. Then I met a person that was controlling and used money as a power influence my relationship with. I grew up in poverty and the influence from this person was mind boggling.  This same person cast me out on the street homeless after I moved to Florida in 1985. This resulted in meeting the best person in my entire life who helped me until his death in 2011, 100% through thick and thin, no judging, no mind games, and no abuse. Then, living through life with my sister after her college graduation and she relocating to Florida to live with me. This made my mother so angry at me. It made things between us very difficult, and she blamed a lot of things in life that she struggled with on me. I found this out through a close friend. Imagine how mortified I was finding this out. Then the biggest life change of all was being diagnosed with Multiple Sclerosis in 1991, at 28 years old. The diagnosis happened at the same time as I was working for an extremely verbally abusive company and boss in a stressful job where I felt the stress escalated and jump started the MS symptoms. The stress from the job continued and I was not getting better, I eventually ended up leaving and relocating to a different part of Florida.

I have met so many people in my life, good and bad.  A few I am still friends with today. I am finally going home. The reason for the flashbacks of my life on this post is that something recently happened with me and another family member that just has me feeling a lot of anger, anxiety, and sadness. When I spoke with a family member, I started to feel a lot of anxiety because of what was being discussed, possibilities of moving near us, and there are a lot of things between us that were never resolved. After thinking about the conversation, I decided it was time to bring my thoughts and concerns up.  This resulted in family silencing my concerns and shutting me out once again. The family member, not wanting to discuss anything, especially about the seriousness of acknowledging what was really bothering me, I have been silenced once again. This is not healthy, caring, concerning, strengthening our relationship or making any type of amends for the continuous toxic behavior that seems to be dominant with certain family members. This alone caused a strain in my ongoing relationship with my sister. We had to have two or three serious discussions on what happened. I think we are ok, I just know I cannot talk about it anymore.

I am still bothered by the fact I was silenced. I have spent years trying to heal from the lifelong family abuse impacted by certain members of my immediate family and my mother’s specific family members, that began when I was three and on the farm. I am now 61 years old, and I have been silenced by a family once again because of what happened in a prior situation that happened about nine years ago and was never addressed and I brought it up. Why? Because what if this repeats again? I cannot subject my wellbeing and mental health to this behavior anymore. It truly affects the MS to the point where it takes days to recover and be able to move again with very little mobility I have left. This specific family member never acknowledged or does not think anything was done wrong and that alone speaks volumes. It took me a long time and many hours of therapy to cope from the years of crap and the last crap inflected by the family. Because I voiced my concerns and defended my mental health with the MS, I feel like instead of feeling ok I said something, and I am a horrible human being because I had to say something.

I was also told my blog will never ever be read by this specific family member. Again, to me, instead of trying to understand why and see how actions have impacted me by family, I was told NO, not reading the blog, not trying to understand, just flat NO. That’s ok, but I feel we cannot be close like before because I have changed. I was not well mentally for years because of the abuse with family and certain people I have met in my life, and I must protect my wellbeing. God says we must forgive and love our enemies. Forgiveness is easy; loving is a lot harder, especially now with this last situation. I am sad, but I need to take care of myself. I have made some drastic decisions on social media and that certain family member is blocked. Do not worry, the certain family member can still reach out to my sister if they want to know what is going on with me. It is no different than before, never really reaching out. I am ok with this, it is not a new feeling, just a constant rerun I am always trying to heal and just live from.