MS and My Life

Tag: Support

  • Support Groups

    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?

    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.

  • Recovering At Home

    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

    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.

  • MS Support Group – 2nd Meeting 09-13-08

    KUDOS!!! to Vicky for providing transportation so Myra could come and be a part of the meeting. Lori came because she wanted to visit with Lesa which is awesome. The more positive influence the better.

    Myra Vicky Lori Lesa 09-13-08
    Myra Vicky Lori Lesa 09-13-08

    Today we had our 2nd MS support group meeting here in my home. The reason the meeting was in my home is because Lesa is staying her to get better from her MS attacks she has been suffering for a few months. We are working on changing her diet and so far we are finding some foods are causing problems for her. We are starting to see a pattern which means what we are doing is helping Lesa realize that food is a huge key into staying healthy and MS attack free.

    The topic of today’s meeting was about what kind of foods people who have MS should eat. One of the things is a low fat diet. Six things should be eliminated from the diet is – Gluten, Dairy and Animal Fat, Eggs, Legumes – such as peanuts, soy and Sugar.

    Today everyone bought a dish to share. Healthy healthy food. WOW!

    Healthy Food
    Healthy Food

    Thanks to Myra, she brought healthy organic veggies to make a salad and hard boiled eggs, Vicky and Lori brought organic fruit and rice pudding. I made an excellent fresh tomato dressing and avocado cilantro dressing to go over the salad and I made hummus and served with celery, carrots and organic rice soy crackers – which we later figured out that the crackers had sugar in them. CRAP! Trader Joe’s sells the rice crackers without the sugar so I will get those next time.

    The food was so healthy and organic. I loved what we had today. It was so cool because people were asking me for things that were organic and healthy and I had everything. Kewl Beans! The food in my house is almost all organic, dairy and gluten free, so it is work in progress. I do miss the bread, cheese, and dairy products though. One negative thing today was that Lesa started to have a flare-up. We all figured it out that it had to do with eggs. So now she knows as of today she cannot have anything with dairy or eggs. I explained the importance of a food journal. Myra shared hers with the group, and she says that she keeps track of everything she eats. Lesa realized that keeping a journal is so important.
    I copied some information out of the book “The MS Recovery Diet” by Ann D Saywer and Judith Bachrach – to share with the group about different foods we should watch out for with the MS.  The one thing I talked about was that we cannot eat a typical American diet, because our MS bodies cannot handle it. The number one problem in today’s society is there are a lot of people who are sick all the time because they do not understand the importance of eating healthy organic food.
    Caffeine and sugar is very addictive. If you drink coffee, some teas, cola soft drinks and chocolate – wean off these things slowly to prevent having a caffeine withdrawal and suffering from severe headaches. Learning to use subsitutes for baking and cooking such as spelt, potato and rice flour instead of flour. These types of flours are pretty much gluten free. Substitute a rice or nut milk instead of cow milk for baking, recipes will have to be tweaked for things to taste good. Instead of using sugar use Stevia – this is a natural sweet plant. Using olive oil, sunflower seed oil and canola oil instead of vegetable oil and shortenings because these are the healthier saturated fat oils.
    Patience is important. It takes time to see the changes in our bodies and since MS is a disease that has no cure, we have time to make the proper adjustments to our diets so that we can live MS attack free lives. Wouldn’t that be an awesome thing!
    What a productive day!

  • Helping someone who is having an MS attack

    Myra and Pam 9-10-08
    Lesa and Pam 9-10-08

    This picture was taken today. Lesa has come to stay with me for a little while. She arrived at my home with Vicky one of her friends on Saturday 9-6-08 barely able to walk and was really stressed out. I think that being stressed out and food diet had  a lot to do with her MS attack. Today is Wednesday, and Lesa is walking and signing so much better. I thought it was the coolest thing to see her walk up 5 steps today without using her hands to move her legs up each step. Every day is a good day.

    I changed Lesa’s diet completely. Sunday I did not serve anything with Gluten or Dairy in it basically it was not planned, just happened that way. On Monday, I served breakfast, gave Lesa gluten free granola cereal mix with organic skim milk and when she was done eating, she became very stiff and was not walking hardly at all. I thought oh boy. She said that she felt her legs were swollen but they did not look swollen. I told Lesa that I think she is having an allergy reaction to dairy and that she needed to stop drinking and eating anything with dairy in it.

    Today I served breakfast, gluten free granola cereal with rice milk and Lesa was fine. I eliminated all dairy from her diet and she is eating no gluten. I noticed such a big difference in her already. I still believe that food allergies can cause MS attacks. As I have said this before, it is so important to keep a journal of everything that you eat, and how you are feeling by the end of the day. Very crucial.

    Lesa admitted to me that she does eat a very poor junk-food diet. She realizes now that staying with me for a little while, a big difference in the way she is feeling. I think that eliminating stress and the wrong foods can make all the difference in the world.

    Another thing I told her that she needs to think about herself. No more worrying about what other people are doing and what other people think. I think it is so important to eliminate all the negativity and stress and this helps release tension and makes the body relax. When someone is so stressed out it causes the body to tense up and things do not function right. I think she is realizing this now.

    Hopefully Lesa will be on the path to healing and by staying with me for a couple of weeks might just change things. I am learning about this myself. I think helping her is helping me to realize how important taking care of yourself is especially when you have MS.