It is no secret that I have been struggling with my medications for the MS as suggested and prescribed to me by my neurologist. Also, I am struggling with my food choices, but after today’s self-research I may have changed this mindset. I have been taking the medication Kesimpta through injections since August 2022. This decision did not come freely or easily to me. I am not fond of medicine because I think medicine can do more harm and hurt a person’s body. I went through extensive genetic testing to rule out some of the side effects the Kesimpta injections may have. One symptom is cancer. Ocrevus weakens the heart. My mother died from Salivary Gland cancer and my father died from an aneurysm of his main aorta in his heart. After serious thinking, genetic testing, and research, I went ahead and decided to try the Kesimpta medicine. The medicine caused me a lot of issues that ranged from massive migraines and constant nausea with no break or relief for one year. Other things I noticed were moodiness, extreme fatigue, and various pain in different areas of my body. My neurologist was not sympathetic and said, “the past medical history of your medical chart shows that you are prone to migraines and the nausea with Kesimpta is not common. Even after meeting with the MS team, nothing was suggested like meds to help with the side effects, an MRI to rule out a brain tumor, or clots that could lead to a stroke after 6 months of continuous migraines and nausea. My concerns about migraines every day did not faze the neuro team at all. Because I mentioned that I had migraines years ago, the nurse practitioner made sure to tell me, “You said you experience migraines anyway”. Yes, years ago, and not very often, thinking what an asshole! Now it’s every day.

I met with my neuro team recently for the next 6-month checkup which now is the year anniversary of doing Kesimpta. I told the NP I am stopping the meds. The NP asked if I was willing to try different meds. I asked what kind of meds I should try, and it was suggested that I should try 2 other oral medications to help prolong the progression of the MS. One was called Aubagio and the other was called Vumerity. I did some research on the side effects and found this: Oh, I loved this comment, NOT, NP said “you MAY stop taking Kesimpta”. I’m like really? I may? Again, thinking, blow it out your ASS! I stopped myself and did not order any more in July. So, here are the side effects of the 2 meds suggested.

I have liver issues from the prior drug Avonex, that damaged my liver years ago. I have neuropathy from MS and diabetes already. The immune system is compromised already, why make it worse?

This bothers me a lot. To suggest these meds knowing I have high liver enzymes to begin with and can worsen. I DO NOT GET THIS LOGIC!

How many MSer’s are lied to and brushed aside by their neurologists and the team? I have lost all faith in the medical system. I have come to the conclusion, neurologists who do not have Multiple Sclerosis CANNOT understand or figure out how to help, ease, and work with a person who has an uncurable neurological disease. It is all about the money and western medicine philosophy. When medicine is not accepted by a patient, they stop working with you and move on to the next prisoner of Multiple Sclerosis.

This month marks one year of doing Kesimpta injections for Multiple Sclerosis. The year has been a turmoil of mixed feelings. Gratitude and being grateful often play a lot with my feelings in terms of my health. I’ve been told recently by someone repeatedly and in a very bullying, hurtful, demeaning way that I should be grateful for what I have. I took offense to that comment and to me it was insulting to a person with a chronic autoimmune incurable disease. It took a few weeks of lost sleep, a lot of tears, anger, return of my PTSD, and meditating, working in my gratitude journal, praying for some answers that I am extremely fortunate to have some things that make my journey in life bearable. These things are: I receive a disability check with health insurance (I have worked since I was 14 years old so that helped) (I know many people with serious diseases that cannot work are denied disability everyday), a very expensive power wheelchair, a dear close friend that lives 2 minutes from me that comes if something is wrong or when I need serious help, a barrier free wheelchair accessible apt (which took 2 years to wait for), I have a semi-sort of good neurology team that often does try my patience because their response time to things needed averages 1-4 weeks (forget emergencies). Forget the PCP – half of the time most do not understand pain, lack of mobility, fatigue, brain fog, and why some medicines they prescribe wreak havoc on my body, I can ride the transportation system just to get out of the house, I can still shower independently sort of.

Still… despite the shortcomings, I am grateful for what I have. There are others worse off than me.

My power wheelchair came with a lot of resistance, frustrations and tears navigating the State of Michigan’s MRS/VR system and my health insurance demands. It took almost 2-1/2 years to get this wheelchair. Let’s talk about the repairs that come with the wheelchair now my main independence and legs. There are not enough wheelchair repair companies. The lead time takes 6-8 months to find a company that accepts health insurance, get the wheelchair assessed, delays from doctors’ referrals, written proper ICD-9 coding from the neurologist team, scheduling conflicts, transportation conflicts, expensive co-pays, waiting for parts to be ordered. Still, I was told to be grateful, this comment still blows me away.

Kesimpta is extremely expensive. Medicare (aka Medicare Advantage under a health insurance such as Priority Health or other insurance signed up for) has refused to pay for these meds. My copay is 33% of the cost of meds which is $1,500 to $3,000 a month. I filed for patient assistance through Novartis Pharmaceutical based in Switzerland and was approved for monthly shots I give myself in my leg free of charge. Hallelujah! For one year now, I have had migraines and suffer from nausea every day. Am I still grateful? My life changed. Are these meds harming me? I don’t feel well every day. I feel like I am getting worse with my health. Food upsets my digestive system. I can tolerate only plain rice, plain potato, toast, crackers, ginger ale, which are all carbs that make my diabetes out of control. A catch-22 situation. I’m struggling with these issues daily.

On top of the Kesimpta issues, I now have internal tremors. My spine, butt, legs, and face “vibrate”. The vibrations sometimes wake me up out of a sound sleep. I’m not looking forward to letting my neurologist or nurse practitioner know. I get no response from them. They do not know what to say or do. No one does. The painful zingers “electric shocks” across my face are constant, every night when I am resting. But the thoughts of gratitude and being grateful stab my thoughts every single day.

The words “be grateful” haunt me…

I think asking for help from family, partners, or friends is not an easy or comfortable thing to do. There is always the risk of endangering a fragile relationship that is built over years or months. Family or friend’s relationships can change in a blink of an eye especially when your life has changed from being healthy, independent, and financially comfortable to diagnosis with a chronic disease, dependent, and on disability. The years of having an incurable disease does change a person, their family, partner, or friend. How the disease is understood or misunderstood can be the cause of negativity, gaslighting, toxicity, verbal, physical, or mental abuse, guilt, insecurity and more. I have changed. I can be difficult. I am a challenge. My patience is tested every day. My sense of peace is always teetering on a tightrope that continuously hangs unstable. My faith with God, myself, my family, relationships personal, or medically is always tested. Being misunderstood is the worst.

When we confide in someone family or friend about personal feelings and things that have happened or is happening in our life and it is used to defame, humiliate, and hurt in a way that causes doubt, anxiety, and insecurity that makes you feel withdrawn, wrecks massive havoc on trying to maintain simplicity and stability in a chronic diseased life is…I cannot think of a word that describes my confusion, feelings, tiredness of bending over backwards to keep stability and me being calm and at peace when things constantly cause so much turmoil in my brain and faith. It is so easy for a person to change and become an ugly human being when things do not always work out for THEM or when you are misunderstood.

When I ask family or friends for something that I need done or just to share what is going on, their judgment and opinions of how they think I should have taken this or that into consideration just blows my mind. There is always that fear of retaliation, anger, exasperation, verbal abuse, nasty language, but it’s about me attitude, rather than focusing on my situation in that moment of need and reasons that I have asked for help or support especially when I was told if you need anything please ask. What is even worse is when someone is constantly verbally abusing you throughout the week and refusing to give back something that was entrusted to them to help because they said they would but did not respect my needs and feelings. My sense of security of feeling safe in my own home that I have worked so hard to feel is threatened and compromised just wreaks complete havoc on my body and mind. I cannot run away. I feel trapped. I feel weak.

Please do not misunderstand me. The gratitude for the help that I have been given from family and friends (you know who you are) financially, personal, and mental support, and always trying to help me make things easier is more than I can describe. I am blessed with this incredible amount of support and love. Right now, I am just blown away by what happened with someone this past week that has brought back into my life the mental and verbal abuse I endured almost eight years ago. I honestly thought I would have never experience that again. To ask for something I need has become difficult and not feeling safe about it. My faith has weakened once again, and I am asking God to guide me through this and to help me forgive because I do not want to. I am not strong.

Those who know me and my Multiple Sclerosis journey and are aware I get around in my bad a$$ hot pink power wheelchair and how annoyed I get when people just do disrespectful things. I posted pictures so you can see why I’m annoyed! Today, the maintenance supervisor and the HUD inspector are making their random inspections. 🙄 this is the 2nd one within 2 months.

The supervisor had PLENTY and I mean P L E N T Y of room to park their golf cart to go in the randomly picked apartment which happens to be my neighbor, parks on the sidewalk blocks me from wheeling out. (2nd picture) what baffles me is that he couldn’t park in the empty patio spots but had to park the gulf cart on the sidewalk where we walk or wheel into our apartments or go out. 🤬 I had to wait until they were done before moving the golf cart so I can throw out my garbage. WHY?!?!?!

When the supervisor came out with the inspector I asked him to move the cart so I could get out. He started flailing his arms talking to me (he knows I’m Deaf 🤬) pointing and festering at who knows! Then a tenant pulls in as they were pulling out; both stop at the handicap blue lines where I need to go to the dumpster and have a conversation while I’m holding my garbage waiting for them to M O V E! Note the whole parking lot is almost EMPTY. But I have only one place I can wheel. Is this right? Why are people that insensitive to people that have a disability? I don’t really understand.

One of my biggest struggles over the years is asking someone for help. I went from helping others or taking care of someone to being the person needing help. It is extremely uncomfortable for me to ask or accept help from someone. This post is something I have thought about based on some things that have happened recently, comments that were made, and the last thing was from watching a movie last night called “You’re Not You”. The movie was about a gifted pianist who was diagnosed with ALS. Amyotrophic lateral sclerosis (ALS) is a neurogenerative weakness that leads to movement problems, eating, swallowing, and breathing issues/ This disease is in no comparison to Multiple Sclerosis (MS) as there are different symptoms. The symptoms may be similar in areas like hand dexterity issues, walking, bladder problems, etcetera. What hit me was how the bond between the woman and her assistant (note the movie did not use the word “caretaker”) develops on many things that are needed throughout the movie such as bathing, showering, cooking, going to the bathroom and how people treat someone with a disease.

Certain things happened recently that led up to this post. I try to be a decent human being despite my disease and strong personality. I have noticed that some people do not treat me nicely. This ranges from public and medical services to certain individuals I thought were understanding. When arrangements are made to have something, I need done and a time is set to expect the person to show up and they do not, royally pisses me off. Especially after texting back and forth many times the day before trying to establish a schedule because knowing myself and my body, I am not able to sit in my wheelchair all day waiting for someone to show. I am usually up by 4:30 or 5:30 am and by the time 10 or 11 am rolls around, I have been in my wheelchair for 6 to 7 hrs. I have already done things like dishes, making coffee, breakfast, cleaning up, journal, checking emails, and by then I am in massive pain in my spine and butt from sitting in my wheelchair. Sure, I can lay down and rest, but it is often I do not get up again until bathroom needs or its dinner time. When someone shows up 2-3 hours late from the set time or not at all, things get ugly fast.

So, when I must wait for someone because they are late or not respect what was planned. I get upset, especially after explaining many times what this disease does to my body and what I am capable of tolerating in a brief time span. When someone is confronted about their lack of respect and they turn around and make it as if I am at fault and I misunderstood especially having proof, this does not sit well with me. Then having to tolerate the abusive cursing, narcissistic attitude, and text blaming just makes matters much worse. Of course, I am going to bite back, and I will bite hard! I do not have to take this type of crap from anyone. I endured this narcissistic abuse for 5 years in Columbus where I used to live, and much of my life growing up with an abusive family.

I do try extremely hard to honor my commitments with professional and personal help, especially with my disease that is often unpredictable. When I watched the movie, the character never once apologized for her behavior. She did feel guilty because the life she had with her husband did not turn out the way it was supposed to. When a college student was hired as her assistant, I loved how the character did not let the assistant demean her and offered no explanations to the decisions she made. It was not about the assistant or the caretaker, it was about her disease and the things she required to live in comfort and being happy. This is something I have only seen in my close friend who helps me all the time. Yes, we do get in tiny discomforting rifts, or I may not agree with her, but we have always respected each other. She understands and she knows. She has never made me uncomfortable or felt bad. She honors the schedules we create and if something pops up I am not made to wait hours for a reply. This is the way it should be. It is not about your friend’s feelings or friendship, or even professional’s feelings, it is about me. I must live with the disease, they do not.

Today’s situation has exhausted me and caused mobility and pain problems. Does this person understand that? No, because the texts have been very narcissistic and blaming. The attitude and messages show me we are not compatible and need to part ways. It’s sad because no one likes to do that, but my mental health and comfort is more important than the “poor me” attitude that is in the texts. This was the same thing I saw in the movie. It woke me up. I need to advocate for me, it’s not about them. If a person accepts to offer to help, then they should do so without any expectation. They have already been told, explained, shown, and been made a part of my plan. There should be no misunderstanding from anyone once the plans are set. I should not feel guilty because a plan or schedule was not followed or honored.

Prior to today’s massive blowup, I was told that I am picky. There are certain ways I need things set in my home. Wheelchair routes to the kitchen, bathroom and living room need to be free and clear of any obstacles. Often when people come over or help, things are put in the way of where I need to go in my wheelchair. When someone helps me with cleaning, putting dishes away, or sit in my chair lift recliner I rest in; I will explain, please put things this way because it is easier for me to grab, or please clean things this way because I would prefer that, please be careful of my remote for my chair lift – it is taped together and cannot afford to have the chair controls replaced at the moment, please use my detergent for laundry because my sense of smell is very sensitive and I suffer from migraines from strong detergent smells, my reasons are dismissed and waved away and I am told I am picky and mean. Again, it is not about you, it is about me. I must live with this disease. My mobility is affected, my hands are affected. My brain has scars. It is not something I can control or help. I learned this in the movie. I am struggling with being firm and strong and knowing what is right for me, and people often do not understand this.

I highly recommend watching this movie “You’re Not You”, it will give the person watching it a better sense of what it is like for a person that depends on someone for help.

My power wheelchair repair crap update! It will take 5-6 months to get my power wheelchair assessed, insurance approvals, parts ordered, technicians scheduled etc. I was told by the representative of this particular company who shall remain anonymous that I am not “special” and there are other people who need serious repairs above me. I must wait 7-10 days for someone to contact me. Was it necessary for that crappy comment? Me thinks 😣😡

I’m grateful for my manual wheelchair to be able to slowly wheel myself around and to go to my PCP doctor appt which I was told I must go or my refills for meds will not be filled. The struggles of trying to stay independent and positive. I’m hoping my hands cooperate.

How is this effective as a medical equipment provider that you sell medical equipment but do not service any equipment or know of a company that does? I’ve called 12 companies in the last 8 days referred by my insurance and the company that makes my chair.

Today my health insurance company told me you just need to buy a new power wheelchair. That was their solution.

To be continued…

Life as a disabled person that uses a power wheelchair to keep mobile and use to do daily things is an everyday struggle. Things like mobility, weather, health insurance rules and changes, medication, transportation, doctors controlling attitudes, government rules, constant advocating to stay independent takes its toll on mental and emotional health. For me this past week was extremely frustrating and difficult. I’m trying to be patient and time, faith and people help, but the fear of wheelchair breaking down overrides the faith thing by 300%.

I received a letter from the company where my power wheelchair was purchased in 2019 on Monday 4/10/23 stating they will no longer service my wheelchair because they terminated the in-house network agreements with my health insurance. The letter was dated 3/30/23 effective termination 3/31/23 for any service repairs. I received the letter on 4/10/23 with no recommendations for other companies to try and see if they service my Quantum power wheelchair with my insurance. I am screwed at this point.

I was never impressed with this company’s office staff. The office manager is very rude and extremely inconsiderate. I always had to fight to get service repairs done in my apartment because I had no vehicle. The 4 years dealing with this company was always stressful and filling me with pure anger on how they have no service repair people to make house calls. If you’re in the business of providing power medical equipment (same as a car) you should have a service department for in and outside repairs. Period. I guess this could be a blessing in disguise, but it is a huge ass inconvenience.

I called my health insurance company to find repair resources for my wheelchair. I explained to them the three local home health companies near me do not service power wheelchairs. The agent said, no problem, I will send you a list of repair places. I received an email from the agent. On the list were the three companies I told the agent that do not repair wheelchairs. This call was a wasted 2-hour call. I’m very tired at this point.

I dug out my papers I received when I got my power wheelchair to find out the contact info “Quantum corporate office information” to get help. They gave me a company based in VA that is established nationwide and does home repairs. Perfect? I called them and yes, they have technicians in my area and all over the US. I’m excited now thinking wow this was easy. I asked if they accept Medicare Advantage through Priority Health. Just a little bit of info – Medicare requires that additional supplemental insurance “Medicare Advantage” must be used. It’s their rule. I was told this company I thought would help does not work with any health insurance, just Medicare. Not “Medicare Advantage” that is required by SSA, just Medicare. I’m thinking ok, you are in the business of fixing medical mobility equipment and you have limited all people that use powered medical equipment to just Medicare. How does this work? I am extremely peeved at this point.

The next day I called Quantum back and was given three more numbers to try. First number was yes, we accept your insurance and fix Quantum wheelchairs, but no we do not make house calls. If you’ve been following my journey on my blog and FB, you would know about my Multiple Sclerosis team. I ranted and raved about them in the beginning before many problems popped up over time. They are great, not perfect, but better than the last few neurologists I’ve had. Quantum gives me a Wheelchair and Mobility phone number that is in network with my MS team. I’m like WHAT?!?! The last 3 years of struggling with the company my wheelchair was purchased from and I have discussed this often with the MS team. You would think they would tell me about their wheelchair facility that is under their network. I’m disappointed. This is not a perfect setup. As a person with a chronic health condition, it is a constant fight for resources.

I called the Wheelchair office and the receptionist answered. It was such an unprofessional call, I had to really be accommodating to them, not the other way around. The receptionist begins her word salad crap before I could explain and ask the MOST IMPORTANT 2 QUESTIONS! – do you service Quantum wheelchairs and do you accept my health insurance? The reply she gave me after her winded extra word salad crap was – “in order for us to see you we need a doctor’s referral”. Ok, I understand that, and I asked again, but before I go through all this time-consuming crap of making sure I’m accommodated properly I asked the receptionist can I explain first?

Some hopeful answers after the winded word salad crap were – yes, we service Quantum wheelchairs and we do accept your health insurance and repeated word salad crap of needing a referral. I thanked the receptionist VERY pleasantly and proceeded to make a call to my neurologist. The call was an hour of wasted time. I know better! Pam, go through your patient portal. It’s the best way. Slapping myself a few times.

Next morning after checking my portal there is no evidence of a message being sent to my neurologist yesterday. So… I did a request through my portal explaining my wheelchair issues and what is required. It is now 5 days later, Friday. We shall see how long this will take. I’m leaving things up to God that my wheelchair DOES NOT breakdown because I will be struggling big time. Just so you know, I do have a manual wheelchair, just in case of issues like this.

Patience is a virtue. Be nice Pam. Be kind. People just don’t understand. To be continued…

Today is not a good day. I’m really tired and my legs are feeling cold on the inside. Might have overdone things the last 2 days – showering, visit with a friend, cooking, and after still side effects of the monthly injection. Looks beautiful outside, but just ugh. 😣 #mymsandme #mswarrior #msandmylife

The simple pleasures in life of being able to still shower. The struggles of mobility to move safely into the shower is energy draining. (Please do not judge or suggest a care giver to help me. I’m struggling with this due to prior traumas. When I’m ready, I will get one). I have to prepare myself mentally to do this simple task that many people are able to do without any struggle.

No longer are the mornings I can say, gonna hop in the shower real quick. My showers are if I’m lucky once or twice a month and takes a good solid hour to an hour and half to undress, wheel to the shower, move my legs to get in safely grabbing my grab bars. It’s a bonus if I can stand for 5 mins letting the warm water beat down on my head. My favorite part. Do the daily tasks of soaping, shampooing, maneuvering around on my shower chair very carefully. Get out, dry off half ways. Sit in wheelchair, get legs up and feet on the feet rests. Rest for a bit. Continue to put on clean clothes, blow dry my hair.

It’s a win for me when I’m nice and a freshly coconutty smelling human when I’m done. My hair looks pretty good too. It’s a nice sunny day today. A blessing to be mobile and alive. Easter blessings to everyone. 💪🧡💪 #mymsandme #msandmylife #mswarrior #mswarriors

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. 🧡