The Journey

Today is injection day. The 5th of every month. Not my favorite day. I should be eternally grateful for these “free” extremely expensive Multiple Sclerosis meds. I am, but the side effects are just atrocious. Migraines and nausea continually plague me for 2-3 days even though the neurologist says it’s not a known side effect. I wish my neurologist would not compare me to other people that take these meds and seriously listen to me.

I often wonder if the injections are helping me I don’t feel any different yet. It’s been since July 2022. Sometimes that little voice in me thinks is the meds worth it? 30+ years fighting, now wheelchair bound, will be the big 60 this year, are the lesions still growing and damaging my myelin sheath on my brain and spine? My nerve and spine pain at times just overrides any logical thinking of trying healthier non inflammatory food, stretching, trying to lose more weight, keep moving, go outside, do art, be more positive and say this too shall pass.

Trying to keep the faith. 🧡

One of the things I miss dearly because of the Multiple Sclerosis and becoming Deaf (please do not judge until you read all of my post) – “gardening”. I love the smell of dirt, plants, fresh herbs, reaping in the rewards of my fresh vegetables that I’ve nurtured and took care of. The rewards and just fulfillment of plants and life outside in the sun, smelling dirt, grass, flowers, hearing birds calming chirps and buzzing of bees flying around my flowers. It’s always a wonder to see hummingbirds feed off my butterfly bushes and flowers. Butterflies flying over my garden. The work of God’s creations he gave us to enjoy and live. I miss this.

This morning I repotted some plants I’ve babied from cuttings into sprouting roots and now ready to plant. I repotted my tiny growing succulent that I bought last year that now has babies and my recently purchased Rattlesnake plant. When I opened the bag of potting soil this morning, ahh the scent of dirt just filled my happy brain hormones. There’s this sense of peace and happiness I feel when I’m working with dirt and plants. Happy Saturday in spite of the rain. 💚💛🧡

Called to have my Kesimpta resent and was told my rx enrollment expired. My renewal forms were sent faxed on 11/22/22. I called Novartis in Nov, Dec, 2022 and Jan 2023 and was told had to wait until Feb 2023 when enrollment is finished. Now Feb is here and I can’t get meds because they said they never received any paperwork from me or my neurologist office. What’s the point in making sure I comply with everything they’ve asked me to do? I stay on top of everything, it’s still messed up. It doesn’t matter what anyone does, it gets messed up!

Yesterday’s neuro visit was not what I expected. I never got the chance to meet the neurologist, just the nurse practitioner. I felt a little perturbed because I would have preferred to meet the “referred” neurologist who was recommended by my prior neurologist that can’t work with me. It is important, especially for the first time we meet. Still maintaining positive thoughts for the visit.

Updates are because of the everyday migraines and bouts of nausea it was suggested to try to stop the Kesimpta for one month to see if that fixed the issue. If it does stop the side effects, then I must decide if want to continue Kesimpta or stop completely. If I stop, I was told that’s it. There’s no other thing to try. It was very disheartening for me when I was told that’s it. After 30 years, there is STILL nothing.

I was told about trying sleep clinics, participating in a clinical trial for cannabis medicine, and see a psychologist for my problems with the pain, sleeping etc. I had to have labs done to check if there were issues with the 5 months of taking Kesimpta.

My number to be called for labs. “58” 5+8=13. (Remember yesterday’s post, I mentioned Lucky 13 because of my dad? Hmm wasn’t a great lucky 13). Geez, ten vials of blood needed. Guess I had plenty, no fainting here. I’m a toughie.

I need to process these answers and recommendations. Came home from the longest slow, bumpy, jerky, rough and nauseous bus ride and just basically shut down. Today is another day. We will see.

One of the biggest challenges with medical equipment such as power wheelchairs, electric reclining chair lifts is losing power because of outages or bad wind storms. Other challenges for me as a Deaf person that depends on high speed working and reliable internet for equipment we use such as a Video Relay Service (VRS) other devices we depend on to communicate or use in our “deaf” world. When these internet services are interrupted by power outages, internet or equipment upgrades things becom annoying and worrisome.

This is exactly what happend last week and during Thanksgiving week. First WiFi upgrades. Due to increasing monthly charges, I had to negotiate the current monthy charges. Having no cable did not justify to me the high $113 monthly costs for just WiFi. This negotiation resulted in new upgraded equipment and serious negotiating about other additional adds I did not need or want. This type of service is a huge inconvenience and taking advantage of customers. I asked for a technician to come to my home to setup the new equipment because of my hand dexerity issues and not being able to screw in or unplug the cables and wires. My VRS is also hooked up to the modem and it is very hard to unplug the wires. I was denied having a service technician come to my home. The internet company told me it would cost $100 for this. I felt that it was unfair because I had disability problems with my hands and being in a power wheelchair. I complied with new upgrades, no technician. The equipment sent by UPS. This resulted in 5 days of no interent service once the new equipment was swapped out and many calls with the cable company through virtual agent and using my cell phone. “Which we all know using VRS, FT, other things is not exactly 100% clear”. After the 5th day, I asked for the service technician to cometo my home and would pay for the fees. He did. The technician saw that I was in a wheelchair and listened to my issues. He said, what the internet company did was wrong and very discriminatory. It took him 2 minutes to fix the issue that the main office “forgot” to do. ACTIVATE the equipment! All of these could have been avoided if the technician was sent to my home in the first place and not gouge me for the service.

I called corporate offices for the cable company I use. It was pointless. Everything is answered by a robotic voice and it takes many steps just to get a live person. I explained what happened. Their response was, do you need a techncian to come to your home? Very frustrating, annoying, and lousy customer care. I tried to file a complaint, but was faced with additional customer service crap with both Deaf and Hearing agents. Truly frustrating.

After that fiasco, the power goes out a few days later due to high winds in the area. I am usually ok with the outages, but now that I am in a power wheelchair and have an electric reclining chair lift, no power is very inconvenient. The first reason, I did not fully charge my power wheelchair. I only had 60% battery life left and my electric reclining chair does not operate with electricity. The chair does have a battery backup with two 9v batteries for just a one-time charge to get the chair in an upright position. I would have to change the batteries each time I use it to recline it up or down. It is not convenient for me because of the struggles to remove the 9v battery from the storage compartment and plugging and unplugging the 9v battery is very hard.

I broke the wire trying to change the battery which made things worse. Now I didn’t have use of the chair during the 10-hour power outage.

My cell phone only had 45% battery life. I used some of my power wheelchair battery to charge up my phone so I had a way to communicate. The stress escalated as having no power increased into longer wait times.

After all the issues with no power, I felt I needed to find a better way to charge up my medical equipment I depend on a daily basis. This resulted in many long phone calls, reading and researching the internet to find out what I need for a power source that does not operate using a gas generator. I called the companies that make the two medical equipments use and the lack of knowledge customer service had about the equipment just blew me away. I wanted to see if I could use a Jackery Power Source.

I needed to know the wattage required to charge my power wheelchair and to operate my electric reclining chair lift. Customer or service deparments did not know and kept insisting I plug my equipment into the wall. I said I do when I have power. The devices do not charge or operate on no electricity. Both comapnies told me they do not know anything and to contact Jackery. I did that too, but Jackery needed to know the voltage and amps the power boxes use. I had to read all the manuals, invoices and use the internet to find what voltage and amps both equipment use. you would think the companies that manufacture medical equipment should already have this infomation. Nope, nada and just NO. BUT, guess what, I found the information on the bottom of the power boxes for each medical equipment.

I NOW know exactly what I need after 2 days of researching on my own. The companies that make these chairs should automatically know and guide customers accordingly. Very frustrating and stressful.

After knowing what is needed for the type power source unit, I called Jackery. They told me to get a 500W power source to do a full charge on the wheelchair. The recliner if use only to rcline up or down during power outages would require a 1000W unit. NOT CHEAP!! The 500W is $499 and the 1000W is $1,099. Of course I do not have that kind of money and niow need to figure out how to get one. Power outages are becoming more frequent and I truly need to be prepared.

Medicare rules make me go 🤦🏻. Did you know they will only pay 80% for the motorized lifting device under the chair that help people with mobility issues get up without struggling? Yes! You read this correctly. The patient has to pay for the chair and 20% balance of the motorized lifting device. Who in this entire world buys just the motorized lifting device? 😡

I sleep in this chair I’ve had for almost 6 years that I purchased used. I plan to buy another one because I’d like a heated one and one that has a massage feature, for bad days and nights, and a power source backup for when the power goes out and I cannot operate the chair without electricity. Cup holder and other features 🤔 I prefer necessary things to have a peace of mind.

Doctors want me to sleep on a hospital bed. My issue is I can’t really lift my left side/leg on or off the bed safely “no props like the chair arms” or quickly to like go to the bathroom. Doctors say, you “must” have a nurse come to help you. The cutting off time for home health is often around 8:00 pm so this means I will be on/in the bed until 8:00 am the next morning. I cannot imagine if there’s a bad storm and no one can travel or get to me. I will have to lay there with pads or diapers on with soiled urine or feces until someone comes to get me up. I say absolutely BS and the worse advice ever! The chair works for me I stay independent! So, will be saving money to get my accessorized chair I want.

Forget this dream bed costs almost 7 grand, think Medicare would cover pfbbttttt!

When Medicare controls and only approve prescription drugs based on their criteria list of acceptable medications, who makes the federal government the experts on health? When I cannot get prescriptions refilled due to their rules and must fight the system, how does this benefit me and reduce my stress levels? They have no problems prescribing opioids, narcotics, or other addictive medications, but have problems prescribing nausea and migraine meds, for injections I take for the MS, I don’t get it.

When a person purchases a 450 lb power wheelchair, a Ez Buzz Around scooter, and a manual wheelchair, the mobility and wheelchair company says they don’t make house service calls, how does a person who does not have a vehicle or a way to get to their office for service? The companies who provide equipment for people with disabilities need to step up and do a hell of a lot better.

When a person needs accessories to make life easier and the company equipment was purchased from has no clue on what to recommend or buy is extremely poor-quality customer service. They made the wheelchair(s), you would think they can at least help with locating accessories needed to buy.

Still fuming…

For those who understand or have been following me through my MS journey, this is the latest. First off, the scheduler called me back the next day after telling me about the doctor schedule changes assured me, she did not give up on my situation and that she contacted the social workers and my neurologist(s). I was hugely impressed and humbled. She did not have to call me back. Score mega points for the neurology department.

Today, I was on the phone with my health insurance for almost 2-1/2 hours today because the neurologist office mentioned insurance covers transportation. I just wanted to make sure that it exists. After being transferred two times and speaking with a licensed insurance agent for Medicare coverage “there is NO transportation coverage in any of the insurance coverages with/for Medicare. Some insurance packages offer only a One-time trip to the doctor for chronic illnesses once a year. I have more than once a year doctor visit.

There are plenty of transportation companies that work with Medicaid. To sign up for Medicaid (which I have at least seven times with nothing changed) comes with an exceptionally large deductible that must be met prior to using Medicare for doctor appointments or transportation. I am on a budgeted income, and I cannot afford the copays. I still wonder to this day why people on disability or poverty level must pay for copays? We barely make ends meet every month with daily expenses of meds, food, rent, utilities etc.

My next plan I think: 1) change neurologists (someone that works on Tuesdays to keep the same MS healthcare team on the same day MCOP travels to Ann Arbor, (2) try to find HUD housing in the Ann Arbor/Ypsilanti area {waiting list is almost 3 years}, (3) move to different state closer to family, or (4) find doctors through Promedica that I had before and suffered greatly from their lack of advocacy and support for things needed. I will lose my medicine that I get monthly for the MS because of healthcare changes.

The story continues…

So, I thought I found my dream team neurology dept and I could stop trying to find excellent quality medical care after 30 years of fighting and struggling with the medical, state, federal systems. I received a phone call to say that both neurologists I’ve been working with no longer work on Tuesdays. This is the only day I can get transportation from Monroe to Ann Arbor. The person who called me said that my insurance company will pay for transportationn and proceeded to hang up on me. I was like wait!!! No, they do not, that is why I have MCOP. Long pause, oh well I was under the impression that medical insurance covers transportation, and I’m sorry we have no doctors for you on Tuesdays. It was just too good to be true., now back to square one. I want to cry.

The story continues…