Tag Archives: chronic-illness

Life Changes

Posted on by
Reply

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.

MS Medications and My Thoughts

Posted on by
Reply

Multiple sclerosis (MS) medications can cause a range of side effects, some common and others more serious. I have been asked mostly by neurologists and some people often why I do not take MS medications. After much extensive research here is a list. My question to you, is it worth it? I have been prescribed Avonex, Copaxone, Prednisone, Aubagio and Kesimpta. All of these had many side effects that harmed my liver, kidney, weight gain and gave me diabetes. The first 5 side effects I have experienced every time I took the meds.

  • Injection site reactions: Pain, redness, swelling, or itching at the injection site, especially with medications like interferon beta. I only experienced this with Copaxone.
  • Flu-like symptoms: Fever, chills, muscle aches, and fatigue, most of these I experienced from the meds taken. 
  • Gastrointestinal issues: Nausea, diarrhea, and stomach pain. Yes, often.
  • Skin reactions: Flushing, itching, and rash, which can occur with various medications. 
  • Headaches: A common side effect with many MS medications. An extreme side effect that often caused me to throw up.

More Serious Side Effects:

  • Liver damage: Some medications can cause liver problems, which may require monitoring. I have this issue and must be checked often through blood work to make sure I am ok.
  • Depression: Certain medications, particularly interferons, can worsen or trigger depression. People ask me this all the time. Depression or just extremely tiredness is my question to the doctor and people.
  • Increased risk of infection: Some MS medications can weaken the immune system, increasing the risk of infections. Yes, it is very common and causes me to be extremely cautious around people. We do have people that go out in public sick and contagious. I am leery going out in public.
  • Heart problems: Some medications may cause heart issues like heart failure. I have no issues now, but it is on my mind ALL the time.
  • Cognitive impairment: Some medications can affect thinking and memory. Not yet for me but again wouldn’t be surprised.
  • Progressive multifocal leukoencephalopathy (PML): A rare but serious brain infection, primarily associated with certain medications. Pretty scary symptoms!
  • Cancers: Some medications have been linked to an increased risk of certain cancers, including breast cancer. Yet, neurologists still push to take medicine regardless of the side effects. A more recent drug called Ocrevus – the side effects are cancer risks. It makes me really wonder why people take this. It is like playing Russian Roulette.

Specific Medications and Side Effects:

  • Interferon beta: Injection site reactions, flu-like symptoms, liver problems, and depression. I have elevated liver enzymes from the Avonex drugs.
  • Glatiramer acetate: Injection site reactions, potential for serious complications like Nicolau’s syndrome (intense pain at the injection site, followed by skin discoloration (often reddish or bluish), and potentially progressing to tissue death (necrosis) tell me – who wants this? I took Copaxone and stopped because I did a lot of research and did not like how I felt and the bad redness and rashes from it.
  • Fingolimod: headache, back pain, abdominal pain, diarrhea, cough, and flu-like symptoms. I had these symptoms a lot. 
  • Diroximel fumarate: Nausea, diarrhea, abdominal pain, and flushing. 
  • Ocrevus: Infusion reactions (itching, rash, flu-like symptoms) and increased risk of infections and cancer. This drug scares me, I refuse to even consider it.
  • Corticosteroids: Insomnia, increased blood pressure, increased blood sugar, weight gain, mood swings, and fluid retention. I have diabetes and high blood pressure from steroids. I have pretty much all of these symptoms.

Important Considerations: Not to be sarcastic or make people think I am not caring, but for years I have talked with my doctors and neurologists, and their responses are: “yeah we know, but it is treatable by taking other medications to help with the side effects”. My thoughts, – I have become a pharmacy with all these drugs. Is my body harmed? These important considerations should include do your research, advocate for yourself, if you do not understand – ask someone until you receive the answer you need. For me, I was never comfortable with the healthcare professional’s response and when they become annoyed and not so nice it raises “red flags”.

  • It is crucial to discuss potential side effects with a doctor before starting any MS medication. 
  • Doctors should monitor patients for potential side effects during treatment. 
  • Many side effects can be managed with medication adjustments, supportive therapies, or lifestyle changes. 
  • Patients should report any new or worsening symptoms to their doctor promptly. 
  • Some side effects, like infusion reactions, may require immediate medical attention. 

Always be cautious, do your research, and make decisions based on research and answers you have before you decide anything. To this day, I still am not comfortable with the MS medicdines that are available and I do not take them. Thirty-four years with MS at 61 years old, still keeping on.

Support Groups

Posted on by
Reply

What are your thoughts about support groups for something you have been diagnosed for? Over the span of 34 years living with MS, I have joined and left a few MS support groups. I never felt good about reading negative comments about MS and believe me there are so many comments it becomes depressing and shows no hope. I expected some negativity, but this last one I am in just literally blows me away and I must stop reading the comments just to keep my sanity and to stay positive with this uncurable hard ass disease. I am still debating if I should leave the group or just stay in it in hopes of reading some positive posts. As of today, there were none.

Looking back on my diagnosis in1991, (please understand this is just bits and pieces, my journey is very long) I remember being so confused (I was still seeing double vision that was going on one month, and I was just not feeling well). I was angry because I did not understand what was happening. The neurologist prescribed 80mg of prednisone, gave me a 2-page folded pamphlet to read. The neurologist that bluntly diagnosed me told me to go home, read the pamphlet, and come back in 3 weeks for a checkup. No support, no encouragement, no optimism – just flat no emotion in his voice on the advice. He never showed the MRI scans or thoroughly explained what they saw on the film. Today’s neurologist’s diagnosis or explanations are a little bit better in terms of explaining, but not much. This was the beginning of my long journey of trying to understand what MS is. Back then the internet was just becoming popular. There was no definite research on MS on the internet until a few years later. Explaining my diagnosis to my family was tough because I didn’t understand. My mother especially wanted me to explain on the TTY (A TTY device has a keyboard for typing messages and a screen to display incoming text. When a TTY user makes a call, their typed message is converted into audio signals that are sent over the phone line. The receiving TTY, or a relay service, then converts those signals back into text for the recipient to read). I couldn’t really talk to my mother because I was seeing double vision. Reading her messages was difficult. My sister had to voice the words on the TTY to me. It’s comical as I am writing about that today, Deaf mom, using a TTY, me seeing double vision trying to read and type, my sister hovering over me and the TTY voicing what was coming up on the screen because everything was double. We were all stressed that day.

I never met anyone who had MS until I moved to the Orlando area. Some rude awakenings there with this person I met at work and learning about other people with MS. It was never a positive experience, and it was always negative and depressing. I learned for myself that if I had to live with this disease, my life needed to be as normal as I could make it, and people’s (especially family and friend’s) negativity was not my problem nor was it accepted. A very hard and lonely journey especially when someone does not understand. The last few days while resting and recuperating from the recent 11-day hospital stay I became very depressed, and my anger returned after reading a lot of the group comments. Today I am reading and starting to decide that this group is just not helpful for me. It is strange because that group has a large MS following. I am guessing that people thrive on negativity.

Looking back on the years I feel extremely fortunate. My exacerbations were not many, and the recovery time was 3-4 weeks with a lot of rest, positive attitude and healthy food. Things did return to normal. I learned to deal with the nasties of life and people. I had some good turnouts and some not so great. It is life regardless of the disease. The nasties will always pop up with family and friends. There is nothing that can change that other than my attitude on how to handle it. I know if I react, I will get sick. I must remember what is important “me” or what other drama that comes with family and friends.

Am I Depressed?

Posted on by
Reply

The definition of depression in google: “Depression is a mental health condition characterized by persistent sadness, loss of interest in activities, and other symptoms that affect daily life. These symptoms can include changes in mood, sleep, appetite, energy levels, and concentration. It’s crucial to seek help if you experience five or more of these symptoms for at least two weeks”.  Interesting explanation. So does this mean I have been depressed ever since I was diagnosed on that day March 1991 that I was told, “you have MS. Neurologst says, “Here is a pamplet on what MS is. Go home and read up and take 80mg of predinsone and come back to see me in 2 weeks”. I remember this day so clearly. I had such a massive migraine and it was in the high 90’s and the person who brought me had no AC in her car. Made me double sick. On top of that she ordered McDonald’s for herself and the aroma from the fast food made things so much worse. When I got home I threw up so violently from the smells, the heat, the massive pounding headache, just so confused because I was still seeing double vision. I couldn’t focus. The neurologist was not helpful. Over the years, I find that this still rings true to this very day.

I met another person in a job i was hired at. Couple of very strange things. One on the application, the question asked was – do you have multiple sclerosis? I thought what a weird and extremely personal and not appropriate question for a construction accounting job and when I met this person who had MS, I was actually excited and relieved to talk about the disease with another person. He replied, “if you are diagnosed with MS, you’re fucked!”. I was shocked and just clammed up not wanting to say anymore. I didn’t know if he was going to spew wrath on me at that moment. Some may think this is funny, but I didn’t. I had been struggling for five years prior to meeting him. It was then I realized there is just absolutely no positivity in this disease with anyone.

Yesterday, my sister asked me if I was depressed? I was taken back by the question. No one has ever asked me this. At this moment my comment to her was no, but the question kept me up all night. I think I fell asleep around 4ish. I thought, over 30 years of living with this disease and becoming wheel chair bound in 2019/2020 losing my ability to walk, went through different jobs some were eh and some were just awful, a violent and hostile uncaring relationship, moving to different states, had a falling out with my sister for a few years, taking care of my mother who was diagnosed with salivary gland cancer, lost a very close friend in 2011 whom I’ve known since 1985, lost two friends to cancer a few years ago, lost friends in general not understanding why, became Deaf from the MS, struggling with a family member that I grew up with and having to let her go because of her crappy-ass attitude, living alone in a wheelchair trying to survive with very little resources, working on repairing my relationship with my sister living in a different state being very cautious (eggshell type) not wanting to start another misunderstanding, dealing with a very abusive and mean person who I thought was a friend but so viscious even my sister was shocked, dealing with health insurance crap, arguing with doctors and neurologists who do not always know what is best for me, dealing with male physical therapists who seem to enjoy inflicting pain on me and making me uncomfortable – recently at the Mayo clinic hospital and a few years ago in Monroe Michigan, reading comments in MS groups I have joined just blows me away, I think this list is sufficient enough for anyone to get the picture. There is more, but it would be a huge book.

Am I depressed? I think I have done pretty damn good for all these years of crap I went through. Yes, I realize everyone has their own story to tell as bluntly told by a former boss “ugh”, but how do I answer this question for myself when the future is not clear. My recent hospital stay was very scary for me. Rode in an ambulance for the first time, rushed into the ER department with over 10 healthcare profssionals hovering over me, very lethargic and weak, clothes removed exposing my naked body “mortified”, trying to understand what is happening, the video relay interpreter (VRI) smiling the whole time while it is total chaos around me, wanted to punch her and throw the machine against the wall! My sister stressed with her new job and me being in the hospital sick, it is just the 2 of us, there is no one else to help out. I am very worried and scared out of my mind. I am home after 11 days in the hospital. Every twitch, pain and bathroom issues has me worried beyond anything I have experienced. I do not want to have any issues that causes my sister more stress and time off work. I pray everyday that I am healing from this, but I am not at peace.