Life living with MS. My everyday view. #mymsandme #mswarrior #

Life living with MS. My everyday view. My used chairlift recliner – is my bed, my dining chair, my lounging chair, eat breathe & sleep in my chair #mymsandme #mswarrior #coldrealityofdisease

Let’s get real people – This story written seems like all peaches and cream – you can do it BS, but in reality we know it’s vastly debilitating, costly, painful, life-robbing, only the wealthy can afford treatment, relationship-breaking, family-doesn’t-want-to-be-burdened, you’re-faking-it, it’s-not-MS-diagnosis-crap-disease. The struggles are real and many (drs, government – Medicare, housing) do not care!

28+ years ago, I lost my hearing in my left ear and in the same year after being diagnosed with MS. This resulted in a life long self acceptance journey of being a CODA (Child Of Deaf Adult), hard of hearing and deaf person. Major trials and some triumphs. On Wednesday, 1/29/2020, what was left of my hearing in my right ear 👂is now gone. It abruptly became silent. My world feels very different. I cannot hear anything, even with my hearing aid. My head feels like I’m trapped in a balloon traveling under water with so much pressure and banging/knocking. Doc wants to try steroids treatment to see if some of my hearing can be restored (saved). We shall see. 👀

Brain Fog” 12” x 12” mixed media using fabric scraps, textured paste, distressed ink, red & gray acrylic paints scraped on with an old card, pastels. My life as a person with MS. I feel like this everyday. There’s no rhyme or reason. It’s just a foggy blur. Remember the white snow on tv when there was no reception, same concept. Inspired by another mixed media artist. #mymsandme #mswarrior #autoimmunedisease #arttherapy #deafartist #art

How does a person with chronic or physical challenges that want to gain personal independence to drive, work or do stuff when constantly being told NO on trying to get accommodations, vehicle or other things.

We are constantly charged huge $$ for things. Example: 72k for a new van with ramp, 40k for a six year old vehicle with 70,000 miles and ramp, specific transferable shower seat that hooks over the bathtub $500, power wheelchair 30k to 60k, special office equipment that configured to power wheelchairs, medicine that could help $20k to $125k, hearing aids $2500 – $6000k, pay for health deductibles on limited SSDI or SSI income, home health care limits 7 visits then fight the system to get more help, threats of Medicare/Medicaid cuts by current President causing huge stress load to an already stressed out load.

Doctors saying want help, stop working – apply for Medicaid, everything will be free.

I think my MS is kicking my butt! I’m leaning on giving up, 7-10 years struggling.

From one of the health talks related to MS. my reply:

Being asked, “what is the worst thing about having multiple sclerosis”.

This is a disease with multiple side effects that affects every aspect of living. To continuously be asked questions that have no change to a disease with no cure, is super annoying. Being told there is no pain in MS, being offered drugs to shut us up about the disease, neurologists that just gives up on you with no followup appts, finding out equipment and transportation costs a gazillion dollars and on being social security income that can’t pay for it, being denied SocSec because the government does not recognize MS as a debilitating disease, people in the healthcare profession telling you what they think you need instead of listening to what we need, shall I go on?

How about doing this instead – here are some great resources for therapy, better MS navigators, MS Social Workers that specialize in providing resources, better meds, caretakers, neurologists who do help along with how to get insurance approvals for meds, therapy, help at home, therapy for pain, without being told NO all the time? Bound and determined not to let senseless questions kick my MS butt 💪🧡💪

Been posting and discussing comments in this thread from Healthline: Living with MS – Selma Blair’s interview – here’s my next blurt out!

Commented to another who commented off my post: could be, who knows…

I think it would of been a lot more effective if they interviewed her with people who are not celebrities, show how we struggle in our own homes, work / live with families who are not always as supportive as many think. The real stories could be hers, but there’s so much more to them then what they have televised.

To provide awareness and education, people need to see more than just a celebrity face.

For example: just this morning, I had to take a shower because I didn’t have one for one month. I almost couldn’t get out of the tub because my left leg would not just move. I was half in, half out of the tub, dripping wet, cold and very naked – saying a million prayers, God don’t let me fall, I’m naked, I don’t want to have to call 911. Then, I had to dry off, put my clothes on, fix my hair, just forget the stupid makeup, (the beautifully fixed hair she had, I had that once, sigh…) barely made it to my chair lift that I paid for, that my insurance refused to cover.

I was hungry, but I couldn’t walk because the shower zapped all my energy. Thank god, my friend came over, got my stuff together, put my washed clothes in the dryer for me, helped me with my socks and shoes, helped me unroll my sweater because it was all tangled up from dressing myself… shall I go on?

These are real-ass stories that need to be told. I applaud the recognition she has gotten, but come on, get real!

I am not trying to be judgmental, these are my raw feelings, but recent exposure from actress Selma Blair’s MS diagnosis has me a bit perturbed. Some of my friends and colleagues have shared their thoughts with me praising and admiring Selma’s bravery in coming out sharing her illness and made comments like, “Bless her for sharing her story or saying just WOW on her interview with Robin Givens. Hmmmmm. I’ve been sharing my story for 28+ years, people that I know personally with MS or I was never interviewed or asked about my MS, can we help, what can we do to get you assistance. People and certain family members get annoyed with me because I’m constantly talking about the disease, food diet, advocacy etc. I was told or screamed at that I talk about it too much or we knowwwwwww!!!!! One person told me I have a life, I can’t be helping you a lot, just here and there. Hmmmmmmm, go figure. Wonder if they’ll yell or say that to Selma?

Reflections of my Chronic Disease life: I haven’t written in a while about stuff related to the MS, There’s a lot going on that has just exhausted me to the point, I want to give up.

Before I start my rant, I’ve signed up to do the MS Walk on May 4th in Wyandotte Michigan. I will be there and will scoot 🛵💨💨 . It is a 1 or 3-mile walk, consider joining Team Inspiration to raise $$ for this disease that just destroys lives. There is no cure and we need one. If you cannot come, consider donating. Staying Strong 💪🧡💪

https://www.facebook.com/donate/567108417125723/10216269307338919/

What’s been going on:

My neurologist has prescribed medicine that costs roughly $65,000 a year. My copay is like roughly $1600 a month. I’m on SSDI and work part-time. My income does not grow extra money for this. I applied for a few funding grants because my doctor(s) cannot help me. Their solution is to stop working and go on Medicaid. 🤔 Not a solution, in my opinion. So, after 4-5 months of calls, research, talking to my insurance company – which BTW were more helpful than anyone I have spoken with, I found a grant and was approved for $5,600 for copays. I can apply again and another batch of money will be approved for the year and the following year if funding is available. HA! got my foot in the door, F I N A L L Y!!!!

Today, I called the pharmacy where the medicine will come from, they tell me the copay money is for one brand not the generic. 😡 Therefore, they never filled or submitted a claim to anyone to find out if approved or not. 🤬🏃‍♀️🏃‍♂️🛵💨💨 The moron said the foundation will not pay for other types of meds. So, I pulled myself up an hour later from my meltdown and called the foundation which operates under the MS Foundation, the social worker said, no the pharmacist was WRONG and any medications associated with MS is covered.

I was too tired to call back and raise a lot of crap because I can. I will call tomorrow. Stay tuned, I have more. Bound and determined not to let my MS kick my butt. 💪🧡💪