I did not have a good night’s rest. I was up most of the night with heavy nerve pains vibrating all down my spine and butt. I couldn’t focus on trying to sleep and rest. It is a new symptom that started about 8-9 months ago. I finally dozed off around 530 am. Ugh. I went outside this morning around 11ish to get some air and pickup food (not in the mood to cook). Wheeled around for a few minutes. People are starting to recognize me and wave. Panera Bread worker saw me coming and met me outside before I texted them I was there. It’s a nice feeling. Some things I noticed wheeling around, the air is different definitely fall-ish, last days of summer flowers braving the weather changes, there is a thunderstorm coming. Took some deep breaths, said a silent prayer, and headed back inside. #mymsandme

When I advocate for myself, make the calls necessary to get supplies I need for my diabetes meter with my health insurance and PCP; the company that was approved by the insurance company texts me asking if I need the supplies after receiving a prescription from my PCP. Extra bonus: I’m on the phone with the supply company at the same time. 🙄 Then after asking them if they do supply the type of strips needed, they confirm and say yes, but wants to send a new different meter because they feel the insurance company won’t pay for my supplies I’ve been receiving for 2 years. 🙄 Last, they need information a form signed by me and more info from PCP to begin the research and necessary investigation to send my supplies (AGAIN!! this is the same company who has been sending me supplies for two years now). I’m sorry, I just cannot..

Second: I ask my PCP to send a refill to my mail order prescription company for Ibuprofen. Yes, I KNOW ITS NOT GOOD FOR YOU! But it keeps me semi pain free when I transfer from wheelchair to toilet or my chair lift recliner. I have not taken ibuprofen for 2 days, I cannot move well. My claw hand returned after 10 months of mobility. so, when I see my PCP in October after 2 failed transport cancellations, I will ask if I have to struggle with her to get the meds I need to keep me semi moving. I’m TIRED!

The 5th of every month is injection day. It’s not a favorite day. I have my backup meds ready and taken for the migraine and nausea that comes with taking this extremely expensive over $10,000 (I was told, did not verify if true, no point Multiple Sclerosis drugs are extremely expensive). Just waiting for the medicine to be room temperature. As my friend Lori Baar used to say, “you got this” 💪🧡💪 #mymsandme #mswarrior #mswarriors

Just got out of the shower. Showers are tough on me. I experience extreme fatigue from movement, the warm water, washing my longgg hair, doing all those things most can do while showering. I don’t shower every day, sometimes maybe 2x a month, it’s tiring. People say get a home health nurse. I’m not ready, it’s a private thing due to trauma. I will get there. But… on a good note, I’m squeaky coconutty smelling very clean. My hair is conditioned, it’s soft and smells like coconuts. It’s a win-win. 💪🧡💪 #mymsandme #mswarrior #mswarriors #msgratitude

It’s frustrating when people compare their health issues to yours. When someone says, oh yes, same as me, or my family member, friend, partner or sibling is going through this too. They’re suffering too.

Just a quick educational thing: Multiple Sclerosis is not the same as fibromyalgia, arthritis, Parkinson’s, brain tumors, cancer, chronic pain syndrome, heart disease, diabetes, rheumatoid arthritis, any nerve pain, or neurological disorders, etc. Very important to NEVER compare diseases. Bringing awareness is cool, but comparing very uncool.

Taking injections for Multiple Sclerosis is not the same as your injections if you’re taking any. The side effects MAY be the same, but in reality they are not. The after effects can be grueling.

My pain with my body is NOT the same as people who have pain. Everyone has their own interpretations of pain. It is extremely important to NOT compare.

Struggles with my food and meds are a constant battle. What I experience I keep track of for my own use and maybe share with my doctors. Everyone has their own level of sensitivity and tolerance.

Sone things you can do is be kind, be caring, ask if there’s anything you can do, don’t just wait until we contact you. It’s nice to get surprise texts, emails, etc… ok, getting off the rant box. Stay strong! 💪🧡💪

After doing my first injection of Kesimpta on Friday morning 7/8/22, I was slammed with a horrible migraine for 32 hours. The immense pounding in my whole head and neck. It was the one time since moving into this apartment I wished my room were dark, no light from the sun. The nausea was the kind where it just sits and festers, until throwing up. My fasting sugar shot up to 321. I couldn’t even get to my wheelchair because my legs kept locking up. Then getting to the bathroom was such a joke. What messes transpired.

I wish the Kesimpta symptoms list would have been more thorough so I could have gotten help and prepared for the effects after the injection. Will be talking to my neurologist on Monday, I’m quite sure this will be a lengthy discussion.

Today, I feel like I’ve been run over by a semi. But, on the bright side of things, I was able to make coffee this morning. Ah, the brewed coffee smells, but not sure on the digestive system yet, an unsettling feeling.

Nothing like a tough,restless sleep for a few days now that’s full of dizziness, excruciating nerve misfires in all of my fingers, and tremors in my legs, butt and spine. The dizziness while asleep is a first, and I’m hoping the last. The tremors have been on and off now for about 6 months. Doc says, we can prescribe muscle relaxers, sleeping pills (I call addictions), and more therapy. But… does not support a herb. 🤔 I’m exhausted today, on top of having to make food to eat. Blew up my coffee pot the other day, forgot to add water. 😖 got a new coffee pot from Amazon, but no recycled filters. They arrive today.

So, I thought I’d be brave and head over to Panera to get coffee. Will never ever do that again. Trying to operate the power wheelchair, open doors with hot coffee, keys, phone, in one hand, operate joystick in other hand. On way home every bump made droplets of hot coffee splash on my hand and leg. As we know, hot liquid on nerve pain hands a double whammy. Got home, drank my coffee with cream. (Hate the Panera cream, mine’s better). I was contemplating my decision I made about coffeeand enduring the hot splashes. Panera coffee is just eh and so not worth the struggle. Now, I’m in my recline chair left too exhausted to do anything.

The struggle is real. 💪🧡💪

Day 15 Multiple Sclerosis Awareness Month – sleepless nights, muscle spasms/twitches, nerve pinches, constant nerve misfires, sudden mood swings, skin itches inside, brain fog, cognitive crap, constant nerve flutters, the hand claw, skin burning red blotches like sunburn, skin feels so cold, can’t get comfortable while sitting/laying, extreme fatigue, massive migraines, sudden nausea, having bathroom accidents, losing my leg functions, medications allergies and massive mess ups when doesn’t work, weight gain, can’t shower everyday it’s exhausting and nerve wracking, cancelling plans because sudden fatigue, can’t get in the car because legs lockup, falling, losing the ability to hold a pen, dropping things, too tired to eat/cook and there’s more! 💪🧡💪

Day 7: present time with Multiple Sclerosis struggles. So excited got a new seat (left picture) because I had a lot of tailbone & spine pain. Today, right foot rest (right picture) broke. Have to ride around with chair elevated with right foot dangling until service guy comes Thursday. When depend on wheelchair 100%, it feels completely hard and uncomfortable. Cooking and doing stuff will be tough. #mymsandme

So, Day 10 of Multiple Sclerosis month. My power wheelchair broke this week. I do not have a manual wheelchair to get around until the power one is fixed. It’s been a rough week. This prompted me to start looking for a backup plan.

I do have hand and arm dexterity issues so getting those big heavy bulky wheelchairs would not be easy and not the type very helpful. I emailed my neurologist to figure out if I need to see a wheelchair PT to determine what is good and easy to use, lightweight, possibly can start working out to build upper body strength (saw a TikTok paraplegic working out, she is just amazing and inspiring!) My neurologist says, health insurance does not cover manual wheelchairs if used as a backup because power wheelchair breaks down. This is the most idiotic stupid thing insurance companies do to control stuff we need! How does a government (SSA, Medicare, Medicaid, private insurance) idiots think a person can get around if their equipment breaks down? 🤬

So, a decent wheelchair that is not cumbersome, not excruciatingly heavy, is lightweight, can workout in it, could probably wheel & transfer myself into a 4-door vehicle with a body board, etc., averages to be $1500-$3,000, board transfer, plus wheelchair PT costs. How does a person purchase one on a SSDI income able to do this? Neurologist said, start contacting Multiple Sclerosis agencies for help. My thoughts: Here We Go Again! I have all my Multiple Sclerosis organizations listings. But I kind of know their protocol and limitations.

I thought about setting up a GoFund Me page. I am really not great with asking for $$ especially now with all of the crap that’s going on. But my over thinking brain is debating – if other people do it for things like rescuing animals, helping people with funeral expenses, supporting an individual asking for funds to travel and stay in another country would this be a good idea for me? I think well, it is a medical need, solution for a backup when/if my medical equipment breakdowns. 🤔