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.

Still Recovering from Hospital Stay

Saturday, August 2nd will be 2 weeks after I was discharged from Mayo Clinic hospital; after an 11 day stay. I still sleep a lot and do not have any desire to cook or do art. Not sure if it is because I am trying to get better or my interests just do not make me want to do anything. I try not to talk about the hospital stay much because I do not think people want to hear about it so, I have my blog. It helps me to not think so much.

I am still experiencing discomfort from the Pure Wick (see picture below) the hospital put in me to collect urine. Before doing PT, the physical therapist instructed the nurses to put the pure wick in before the therapy. The wick (blue part showing in the picture) was jammed and bound so tight between the rectum and the spot where the urine comes out and on top of the binding and underwear, they used to keep the wick in place and to get me up from the bed caused such tremendous pain. The physical therapist was an asshole in my opinion instructed the nurses to do this. After 3 unsuccesful attempts to stand up with 2 physical therapists hovering over me and the pain from the pure wick, I was really annoyed and upset. I felt like I could not move from the pain from the Pure Wick and being weak. Then the PT instructed the nurses to move me over to the recliner after the 3 attempts to stand. I was in the recliner position for almost 4 hours with so much discomfort. Finally one of the nurses who was working with me for the 11 days she and another nurse moved me back to the bed after seeing how much pain I was in. Because of the pain from this ordeal, I feel this is what caused me to tell the doctor the next day I want to go home! Period! I am hoping the discomfort I am feeling will subside soon.

I thought to myself these last few days, hospitals and some healthcare professionals can really traumatize a person from their decisions and lack of empathy. I had to follow up with my PCP and endocrinologist as ordered from the hospital. My sister and I just moved so we haven’t found a doctor we like. The two doctors I met this past week and half, their attitude and compassion for a patient lacks big time here. Just not impressed. I need to find someone I can trust. Also, United Healthcare totally sucks in terms of medicine and healthcare coverage; I am changing in October during open enrollment. Doctors I need to work on. I know myself, if I am not comfortable, I will not go to the doctor.

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.

Rushed To the Hospital

I plan to do video logs (vlogs) to do these posts so everyone can access my blog without difficulty. I am still recovering from being in the hospital for eleven days. I feel weak still in my hands and body making signing ASL very hard. Hopefully as I recover more, I will be stronger to be able to sign. On July 8th, 2025 I woke up feeling really lousy, worse than I have been feeling in the last few months. It took a lot of my strength just to transfer myself from my electric reclining chair to my power wheelchair. When I got to the bathroom,I had the same difficulty transferring from my power wheelchair to the toilet. I changed my clothes with a lot of difficulty and then I tried to get up. After 20 minutes of struggling I called my sister at work. She rushed home, took onelook at me and called 911.

I was rushed to the Mayo Clinic hospital and was met by the ER team. I remember some things like they had a virtual relay interpreter (VRI) ready, neurologist, several nurses, and other doctors. They wheeled me to the CT machine twice to rule out a stroke or any blood clots. The look on Karen, my sister’s face told me it was not good. I had a severe UTI and kidney infection with a high fever. An MRI was scheduled for the next day. Karen told them I cannot lay flat in the MRI machine without anethesia because of severe vertigo and lower back and tailbone problems. I was wheeled up into a private room and was pretty much out of it for the next few days.

On 7/9/25 a MRI was scheduled and there was some good and bad news from the procedure. The good news was after having MS for 30+ years there were no new lesions, tumors, or any other issues. Everything looked the same. The bad news was the infections attacked the MS lesions and woke them up causing a massive flare-up.I woke up with my right arm beet red from the MRI team tightening the latex rubber band so tight that it popped several blood vessels in my arm. After a few days, the arm color returned to normal.

I will continue to write when I feel stronger. But for now, these are short posts. Stay Strong, and take care of yourself, you only have one life!