Disclaimer: no one or anyone was harmed by this personal writing of my thoughts. I am just really frustrated and extremely angry for being deceived for 30+ years.

Not sure how I should write this post. They say just write it. I’m angry. This may either make you go ohhhh, or may make you roll your eyes. Either way, it’s my emotions, frustrations, and anger. Little bit of a reminder, for you: Multiple Sclerosis diagnosed since 1991, wheelchair user since 2020, became Deaf 2020, still fighting despite the huge let downs.

My sister had to do her annual pituitary gland checkup to make sure the tumor has not returned. She’s had three since 2003. She asked her neurologist if he could recommend a neurologist that specializes in Multiple Sclerosis. Here’s the shocking game changer. I’ve been referred by my PCP’s since my first diagnosis to the WRONG specialists all these years. Neurologists are not the specialists. They do not work in depth with people diagnosed with this debilitating disease. Her neurologist said I should be seeing a neurologist that is an immunologist specialist. I have a compromised immune system. The neuro-immunologist knows what tests to order, what to look for, how to help me better. My mind is just blown and mixed up.

My lying face shows I’m ok, but my feelings deep inside are a dangerously brewing , volcano ready to explode and spew hot red lava on all the healthcare doctors I’ve seen. My brain is filled to the maximum of betrayals, why’s, and what if’s! Most of all I feel so stupid. Even the many books I’ve read does not mention this that I remember to the best of my knowledge. Time for the fire pit and fire places to be fueled by these books I’ve read as fire starters. Maybe fill all the lying written pages in rocket fuel for that stupid SpaceX rocket when they head to space to float for all eternity. I have lost ALL faith in the health industry, western medicine filled sludgy sticky crap-ass money hungry doctors and in homeopathic consultant fakers too.

Right now this avoiding inflammatory foods and eating natural, organic, taking supplements, reading health & wellness consultants advice is just sitting in a puddle of pure stench filled ugly yellow-green diarrhea crap of why bother? There’s no amount of rhyme or reason at this time anyone could convince me otherwise. I am pissed off!

I think I just need time. Not sure if my resentment will ever go away with the constant ever breaking down power wheelchair staring in my face as I do art, cook, or lay in my chair to rest which I am ALWAYS doing. Even reading and dealing with the ableist morons who spew asshole comments about what they think is best for me that have never ever experienced losing your mobility, your hand dexterity issues that sometimes affect wiping your butt, the lack of depending on other people to help, the government’s betrayal for people with disabilities, the constant guilt of being a burden, the threats of government cuts that are always dangling, the constant fighting for approval for what I need just makes me spew hot curds of vomit.

Just keeping on, keeping on with a bucket of potato chips and chocolate…

Recently, I was cleaning out texts from my phone. At the very bottom of my text messages, I read texts that happened one year ago. I realized that it took me a long time to heal from these verbal attacks from a former friend. An article from an MS site I received last week validated some of the feelings I was going through for a long time. I am going to reference some interesting points (rewritten in my words) that I read in the article. For years, I felt I was too sensitive about things that I have been subjected to and always pushed many of my feelings deep down inside. I do talk about things I have gone through, but I did not realize how my trauma memories and feelings pop up unexpectedly. I was feeling out of sorts these past few days, and I feel when I read these abusive texts, this is why. I learned that journaling in my blog really helps me cope.

Negative and abusive people.  There are people that are constantly negative and abusive about your disease that does have a damaging impact on MS and chronic illnesses. Toxic people can be anywhere – friends, partners, family etc. We should never tolerate someone who makes that life even harder. Because of the negativity and abuse injected by those close to us, decisions must be made to protect our wellbeing. Ending a relationship of any kind is not easy or simple, especially for someone that has a chronic illness, and it is common that we do not always have understanding family or friends. Thinking about your wellbeing is detrimental and it is important to always remember that you deserve peace and a stressless life. When talking to the abusive or negative person to explain how they make you feel and why that is bad for you, and the verbal assault continues, it is time to remove them from your life. We often find support in our close friends and family to support us but have people that think they are being supportive but turn out to be the exact and extreme opposite of that.

I wrote about this before in a prior blog. I asked a friend to help me do laundry because my other friend was extremely busy that week. This is the basics of what happened. I decided on the time because she refused to set a time based on her schedule. On the day of the scheduled pickup, she texts, changes the scheduled time her preference. I got angry because of her unwillingness and numerous texts back and forth the prior day of setting the time, she decided to change it to suit her needs. So, why all this drama? I explained to her that I am already in my wheelchair for 5-6 hours doing things and I am in pain. The time she wanted to come by is the time I rest. So, I said never mind, I will try to do laundry myself. She went off on me, some of her texts I received just blew me away. I changed the swear words with symbols, because it is rude, mean, bad, disrespectful and totally unnecessary. The texts she sent me went on for a few days. I just stopped texting back because I knew there was no point or reason to rectify the situation. I could not block her yet because she had the key to my apartment. I was not comfortable anymore. A friend and her husband suggested to tell the rental office I needed the locks changed. I paid the fee and had them changed. Thank you, you know who you are. I finally slept that night after a few sleepless nights. Some of the things that were texted to me from the friend that week were very triggering for me because it is very similar to what happened to me a long time ago with an abusive Deaf aunt and in again in 2 other places I lived for a few years. I thought I was ok, but I really wasn’t.

She texted:

• Our friendship with your choice is over, I will drop the keys off tmw… I am so speechless for who you are… it’s uncalled for.. no worries, I won’t ever see an ugly muggier ever again… you are so clueless!! People do care!!! YOU DONT, I saw that.. I am so saddened by this, I realized it’s on YOU.
• You have a very mean spirit in you!! You need to work on being grateful for people who are there for you!!!!! Shame on you!!!!!!!!!!!!!!!!!!!!!!!
•  Bc you broke my f$&@ing heart!!!! You are just so ugly
• Ugly heart!!! Very ugly heart
• You are hurting yourself a lot more than it should.. I can’t believe you.. you don’t f$&@ing value me at all.. over a f?$@ing laundry basket to pick it up. What the f$&k are you thinking!?!?
• You are more ruder than before..
• Cussing is only a f$&@ing expression… duh!!!!!
• It’s your MS cause to be that way.. if it is, then I forgive you.. I don’t care if you blab blab blab blab to deafies.. big mouth…. Go ahead and bite my a$$.. I really am so hurt by you!!!!!!!!!!!!! It’s so mind boggling!! Never f$&@ing again.. I don’t want your friendship bc you are not healthy
• F$@k you f@&k yoi f$&k you f$&k  you f$&k yiu.. go head remove me all of your support groups and you.. I don’t care!!  Hurt me more like you always do the last time.. I never eliminated you!! I valued you as a person!! F$&k you Pam.. you love a very good friend
• NEVER AGAIN!!! Our friendship is dead dead!!! You are emotionally very very immature, it kind of made me see why your ex don’t like you!!!! Shame on you!!!! Ohh deaf Pah, that’s the name of the bullshit you put people through… I cannot believe you!!! Shame shame and shame on you
• I already forgave you.. this is something you need to work on yourself: FORGIVE YOURSELF.. stop complaining, you are YOU and you make choices to keep or reject others.. God says to love everyone!!!
• You can read me, you can feel me.. come on Pam, you are 60 years acting like a four year old for rejecting someone for your silly demands.. it’s the stupidest thing I have ever met a person like you…

Like I said it took a year to heal. Will I ever heal? I hope so. I pray to God to give me peace and give me the courage to forgive. Jesus forgave. I never claimed I was perfect to anyone. I know I am not. Yes, I can be difficult, but anyone can be difficult. I am not the only one. I learned from journaling, reading the bible, talking with a friend on our weekly chats that I need to forgive to let go and be happy. I couldn’t for a year because I shoved it down so deep in me and I paid the price because I had several MS episodes. I am trying to remember if I said things like that to anyone. If I did, I am terribly sorry for being such an ugly human being. My boundaries with people are now iron clad. I will never tolerate this kind of verbal and emotional abuse from anyone ever again. You will be blocked from me. Period. Now, I am in a different place. I feel much healthier mentally than I have in a long time. I feel I can move from this experience because I have the tools to work with to keep my wellbeing strong. I finally deleted the texts from my phone. Things seem much lighter. I tried to do art on this, but the art to create is so ugly and evil I did not want that in my art space. I journaled instead.

Patience is not the ability to wait, but the ability to keep a good attitude while waiting

This is a raw feeling post from a few weeks of crap, triggers, and behaviors portrayed by others.

The thoughts and feelings of anger, having no patience, and trying to be fair to certain people about me, have returned. Some history – I have been fortunate to relocate back to the south after leaving Florida in 2001 to care for my mother who was diagnosed with metastasized salivary gland cancer. Back then the laws in Michigan for Deaf people that needed interpreters for medical situations were not strictly established as they are now. Due to this lack of accessibility for my mother’s health journey I had to change my life, my sister too. My mother refused to relocate to where my sister and I were living, so I did what I felt was the best solution for my mother to be safe, have support, as well as the proper care for her cancer journey. I sold my home, quit my job, left two very close friends to me “my total support system”, and moved back home to Michigan where I grew up. It was a very depressing and unhappy time for me as I never intended to return to the place of many difficult memories.

When I returned home, the turbulent relationship I had with my mother intensified with many bitter arguments and her extreme hurtful insults returned. Because of this, the MS disease became active after years of being dormant and this resulted in two major MS exacerbations that weakened me, the starting point of 24/7 neuropathy with intense pain and severe depression. I never really shared the MS symptoms and the struggles. When I did, I was given a lot of “really, yeah sure, exasperated looks from family and friends that went on for years until I reached my breaking point on a Thanksgiving holiday when I visited my sister in Virgina many years later. Oops, a squirrel moment, another time and place. I will share when I am ready.

My mother did not want me living in Michigan to support and care for her. She made that very clear in many of her screaming matches and abusive insults of being fat, get out and go back to Florida, I do not want you. My sister was caught in the middle and really did not know how to handle this. The one thing that shocked and hurt very deeply was my mother’s longtime friend who she met at St. Rita School for the Deaf threatened me in my own home. She came up so close to my face and pointed at me and signed in ASL, “you better be good to your mother, you better not hurt her. I know what you are and what you have done”. I was shocked and my surroundings went blank. I froze, I couldn’t breathe, I couldn’t move. My gut feelings were true. My mother lied to all her friends and some members of family about me. I have never threatened or abused my mother, it was the other way around. I left home at 16 years old, I did not feel safe around my mother. This marks my long struggle with myself to know that I am a good and loving person and to repair, heal and love me. When my mother died the last words, she said to me was “I am very proud of you”. I felt so much anger and hatred and wanted to just shake her awake and scream obscenities at her. To be honest, I cannot seem to think or feel that I loved my mother ever. She always hit me in the face and on my head. I always wondered if this is why I was diagnosed with MS? (I know it is not, but I do wonder). When she died, I felt relief. I am not sure if it was because she died or if it is my thoughts of finally, it is over, and I can live. I never cried. Today, I have let go and forgiven her because I need peace in my heart. She was a very unhappy person and I have finally realized and understood, it was never me.

Fast forward to 2024, 20 years later: Karen and I have worked on our relationship. I think it is more truthful, better communication, we share things no matter how uncomfortable it may seem.  I have set very strong boundaries with certain family members and friends. If I am uncomfortable because they do not understand especially how much MS has changed my brain and life and they still become hostile, angry, and verbally out of control, I stop it. I learned this through therapy, art, and journaling. I am working on my relationship with God. It is a work in progress, especially about honoring thy mother and father. I write in my journal about it and talk with someone about it. I do not have peace with that commandment or scripture. There have been many years of abuse and hurt. I know I cannot change it and I need to always remember I am ok.  Not sure what the bible says about people around us or friends. But I try to be patient.

Today, my patience with years of abusive, stupid people and being in 2 former relationships that were full of verbal, mental and physical abuse as well as working with people in the Deaf community is a miraculous deal. Yes, shocker – there is ableism, power and control, trauma, bitterness, and abuse in the Deaf culture.  I am Deaf because of the MS. I am in a power (electric) wheelchair. I have severe hand dexterity issues that often interfere with the ASL. I am lucky, I speak very well because I was hearing/hard of hearing once. I am constantly reminding people I live with I am not able to hear when they come into my space, and I do not know they are there. I am always turning on my speech to text app so that I can understand them even though they have phones and capabilities to do better and be respectful. I am constantly defending the disabilities I have pretty much every day. It is tiring and super annoying. I always made sure I was not inconveniencing others with the apartment space, and the patience has worn itself thin. I decided to stop doing that yesterday (the triggers have returned) – piling on the unsureness and guilt trip on myself. Able-bodied people should know automatically, especially after being told and educated and uhmmm it is visually obvious about the MS, hints: walker, wheelchair, sister helping me, moving to be near her. I am not sure what more proof is needed. I am done with guilt. I now think and say, deal with it, it is on you!

Do better.

What do you do when disease changes things? Life changes.  Family changes. Friends change. Relationships change. Strangers or acquaintances become “the experts”. Doctor changes, especially when medicine is involved. People lie. People have suddenly become experts and have strong opinions about how I should do things and give up. These are a few of my favorite things, NOT. As a person with a debilitating disease, MS has changed my life. More now than ever, especially in the last 8 years. I have become creative, moody, skeptical, wary, stressed, shocked, experienced extreme ableism, constantly defending myself, explaining repeating, and very unsure. I have been through a lot, and I am certain I am not alone. I read somewhere and someone very bluntly told me, everyone has their own story to tell. How it was said to me felt like an insult. It was said during a time of struggle. I was taken back by the comment and immediately felt guilty and was complaining. I am a pretty strong person; I do not give up easily. When set back with life and people punches, I try to recover from the situation and repair my thoughts and emotions to the best to my ability. I am beginning to realize that I can be patient, kind, forgiving, nice, accommodating, educating, but human nature is not always that way and most often very hurtful and selfish. It is a 50/50 balance.

I had some life changes recently. I turned 60 this past year and I really struggled to find peace within me that I am a person with a dual disability. It has tipped the scales some. Life as an abled bodied person does not seem feasible right now, there are more life challenges. Adapting to other people’s moods and inconsideration is an extra thing now. Please do not misunderstand me, I am grateful for ALL of you that have helped me with things, you know who you are. I am in a new place now; I have moved again and relocated to the South. Was it a good decision? The grass always seems greener in my head, but there are some brown spots. Living with family and other people is nice for my mental health, but it is hard. It is more challenging and stressful for me when there are other people involved. And it is more difficult for me because I constantly feel I am a burden. Living alone has its perks and struggles. Is that an everyday feeling? I think it’s a 50/50 give or take. I can see other people’s emotions in their faces and body language, and it is uncomfortable. I retreat within myself, so I can try to remain stress free and calm. Stress and disruptive environments are not good for my wellbeing, Living alone was a different kind of stress. Maintaining independence was and has always been my number one priority. Staying strong and healthy is also my number one priority. I sound selfish. Why do I feel that way?

 I have other people in my environment now and I feel burdened to make sure they are ok, not uncomfortable, not tired of doing a few things for me without an opinion, constantly reassuring myself when asking for help it is ok regardless of what they think. I did not have this living alone. My constant was always trying to find help with things and asking for it, holding my breath just in case I will be told no. I look back on some things. I have had some amazing people in my life. There is one person in particular who has been my solid rock with nothing expected from me, I will eternally be grateful, a god given angel. Others have helped me with things desperately needed. The things were relocating me from a hostile environment to a better place, gave me money for things I desperately needed, shopped for groceries, helped with personal things like laundry cleaning, lending a shoulder during rough times. With that came some downfalls like people not coming through with promises. It is a 50/50 take. Now today, another 50/50 situation, but with people involved. The struggle for balance intensifies. My wellbeing is somewhat compromised.

I need to have faith and believe that everything will work out. It does not feel like it right now, but I have been told, trust it. Doubt is a huge negative force to overcome. Trust. Is faith and trust a 50/50 balance?

Having a positive mindset is challenging. Our mental health is affected by many things that can come from abuse, addiction, attitude, society, illness, health, chronic disease, opinions, people, family, friends, God, faith, religion, and/or things that are happening in the world. I am sure there are more reasons out there that affect mental health. For me I know my mental health is very challenged by disease. It can be difficult to have a positive mindset mentally when I see myself changing physically. The biggest challenge for me is people think I can still do the things I used to do when I could. Simple tasks like holding things, doing simple tasks like wheeling myself outside, cooking, folding clothes, twisting things, cutting stuff, exercising, even going to the bathroom are all obstacles that affect me mentally and physically. I know in my heart people have good intentions, but then again, their intentions to me are unrealistic and extremely annoying at times. I try very hard not to be someone else’s burden. I have been told I am not a burden and to stop saying that. How does a person with a chronic autoimmune disease in a wheelchair who often does not have control over the simplest task stop feeling that when an able person says that?  

Some things I am triggered by recently are comments and posts on social media and other things sent personally to me about mental health and getting uncomfortable about change. I think about this every day. My behavior is affected every day by simple things such as brushing my teeth. I am uncomfortable every day.  I worry and am extremely challenged with change simply because I know my body so well. The constant thinking and planning of how I can do things for the day, how I will move from chair to wheelchair and back, resting is a huge challenge, etc. My body changes every day. Just because you saw me do something yesterday does not mean I am able to do this same task today. If something I read or saw triggers my mental health and well-being, I have a hard time processing it. But just because I am struggling does not give me the right to treat someone else like crap because of a past situation. If you cannot deal with something, then wouldn’t it make sense to get therapy to help you heal and move on? To say that you do not need therapy or spend money for therapy about past traumas or mental health stability just does not make any sense. We are creatures of habit. When things affect us, we do things that are not healthy. Overeating healthy and not healthy, drugs, alcohol, spend money knowing you do not have room to spend or charge on credit cards, make impulsive choices that we think make us feel better, treat people we are around badly, walk around looking dejected or hurt, insult others, mope, sleep a lot, and more. I think I have given out enough examples.  

Keeping quiet and not acting on my annoyance is a skill I have had to master, and I am still working on it since the wheelchair became permanently attached to my butt. My outlet right now to a peaceful mindset is Pinterest, journaling, or art. I believe have a great attitude for the obstacles I go through every day. This is extremely uncomfortable for me. I cannot drive anymore, type fast, work full time, cook for hours at a time, take a bath, open things, write with a writing utensil, sleep in a bed, hold a camera, open pill bottles, rip open packages, hold a book, being alone, possibility of not having a companion, just get up and go spontaneously, travel, having bathroom accidents and needing help with that, showering, being naked around people that help me,  the simple things I used to do. These are life changes that I had to overcome being uncomfortable. These are still ongoing things I need to overcome every single day knowing if I can get better or not. This disease is 50/50. This disease changes a lot. They say your mindset is everything. How does that work when diagnosed with an incurable disease? That to me is the million-dollar question. I have been told trust God. God is the answer to everything. So, if my feelings are all over the place because of the obstacles faced daily, does this mean I don’t trust God? Be patient, I have been told. Sometimes the pain I have in my body 24/7 just blows my patience out the door. I try every day to be diligent in my habits of wellbeing, my faith learning, loving people regardless of their crap, do not succumb to the disease, just truly tries me every day. Trust God, I have been told.

There are people in this world who have endured more than I have. Their lives changed so drastically I feel like I am ungrateful. Today someone told me I am not ungrateful because it is how I feel. The worst feeling I have is to be compared to another person’s struggles and obstacles when I talk about my own struggles. I feel like I am being told, there are others out there worse off than you. I keep a lot bottled up and just wheel away and lay in my chair because I feel guilty and ungrateful. I know there are others who struggle, have barriers to overcome and I do not think I am superior and require more. It feels that way when people compare the disease I have to others. It truly is not the same.

I wrote this post last week sometime when I was tired, in pain, and experienced a couple of issues that I have seen with my Deaf peeps. AND I am tired of things that I’m confronted with everyday the “it’s about me generation” in terms of disease such as Multiple Sclerosis that comes with many symptoms and they can be similar to other MS‘rs or can be something entirely different. I put this post in draft mode because I felt I was mean and too harsh. Then I thought oh no, this is you not me.

I think my biggest struggle when people become defensive and hurt when I don’t show a pleasant and cheerful sunny face, especially when it’s been a rough week or night. It is even more annoying to me when the “Multiple Sclerosis” posts and comments from people are just, ugh! When I have to constantly explain or reassure someone it is not you, my anger and extreme annoyance creeps in.

I have been struggling with migraines, nausea and lack of sleep because I sleep during the day to rid the headaches and nausea. Then at night, I’m awake dealing with electric shocks now which has a name: Lhermitte’s Sign and lots of nerve and muscle pain in back, hands and feet. I do not want to constantly reassure someone in a smiley, singy-songy voice hi! It’s not you, please don’t be offended. It’s just the Multiple Sclerosis. But in reality, I want to say f@&k you and kiss my ass. Grow up, deal with it, you go hide somewhere away from me and STFU.

This behavior sets the feeling of “hatard”. I don’t want to be this person. I have to constantly ask God to help me be understanding. Be understanding because someone “thinks” that they know what it is like because their own experience with a family member or friend is the same way. SO NOT!!!! My biggest pet peeve is when comparing me to someone you know or even with yourself on the pain, mood, and attitude.

Multiple Sclerosis has made me Deaf. Please do not misunderstand me. I am a person who has a few Deaf relatives, my parents are Deaf, but I was hearing at one time in my life, then diagnosed hard of hearing, and now I am 100% Deaf. Yes, I am fortunate I know sign language, I’m grateful to have this beautiful language instilled in me. I understand now what my parents have gone through in their life with hearing family and friends. For me, it is a new thing, more profound than being hard of hearing. I miss hearing. It is an everyday struggle because I see things and know what it sounds like, but cannot hear it anymore.

I am living in a place with other people. It is a new process I am trying to adapt to. There is one thing I will not feel guilty or responsible for making others comfortable when I am around. I will not ease their being uncomfortable or reassure the mindset of what they are insecure with. If you as an individual have been exposed to a “Deaf person” or “Deaf culture”, then it is your responsibility to learn about our culture. We have endured more crap from the “hearing” society than you have. I’m tired of trying to ease the “you’re talking about me” in that hurt attacking, threatening, storming off, and stomping around attitude and mindset. Be proactive and find ways to communicate. Technology today is amazing, there are NO excuses. Again, get uncomfortable, STFU, then educate yourself.

This post is about how I feel, not to smooth over hurt feelings because again, it is you not me reading into things incorrectly and unfairly. Until you have 100% experienced Multiple Sclerosis and Deafness, be mindful and empathetic, or you can just keep on continuing to hurt yourself and be ignorant.

Whoa! It’s been a minute since my last blog post. I checked the date. The last post was dated September 2023. It’s time to mention what’s been going on. First, i turned 60 years old. A huge milestone especially living with a disease that has no cure. Second, I think I posted I stopped taking Kesimpta injections. The constant migraines and nausea was getting old. After no support given from the neurologist, I made the decision to stop. The migraines and nausea have been less, but it’s more than what it used to be. I am wondering if there’s something else wrong. Will be discussing this with the doctor.

Finally, in October after a long thought process I relocated to South Carolina to live with my sister. The lack of support from my healthcare team, transportation and wheelchair repair failures, the constant battle with finding help, and government resources have caused my mental well being to be very unhealthy. I’ve been advocating for myself for many years and it has taken a huge toll on me. The last resort was from my PCP mentioning she was concerned because of my being alone and struggling and I am not resting any easier. The move was costly and the drive was beautiful, but exhausting. I am proud of myself having survived it in spite of the pain sitting in the car for over 14 hours. My feet swelled and after 2 months they still swell up. I will be talking to the doctor about this as well.

My mental health has improved. It is really nice to be around my sister. Nice to talk to someone face to face opposed to video chat. Many family and friends ask or comment how much better I look. I think I look the same. I just hope people understand that my physical wellbeing may never improve, but my mental health is better. My sister makes a huge effort to take me out around where we live. It is beautiful here. I thank God I was able to do the move despite the challenges. My physical health is still the same. I am lifting weights now. I hope that will improve my strength. I am able to stand holding a fitness pull-up equipment for 20 seconds, huge improvement just trying to stand up straight 5 seconds from a sitting position. I am not able to walk without my left leg dragging. I hope that changes as I do more exercises.

Setting up resources for myself is still a huge challenge. I do not think it matters where you live, people that work in healthcare or the local government or resources just do not think very good or outside of the box. I will be seeing a new physician this week and I’ve thought about how to handle this. I have had so many doctors and neurologists over the course of 33 years with this disease and I have decided that nothing will change in healthcare. I have to change my mindset and be firm in the direction of my health. Struggles are still there in terms of explaining my needs and the concept is extremely hard for people to understand. Some examples: I had to get a new state ID. I wanted the ID to indicate that I am Deaf. If something was to happen, at least whoever could check my id and see that I am Deaf. At the DMV, there were 5 people including the agent hovering over the computer for 30 minutes trying to figure out where to type I am Deaf on the id card. I told them to forget it. I brought my recent audiogram to show proof, but was told it was not acceptable because they needed a doctor’s signature on their form, even though their website says the audiogram is acceptable. Yesterday, I received a call from the doctor’s office to confirm that I was still going. However, the call and text said, Pamela Fine instead of Groth. I thought here we go again! The doctor office did not understand the request for an ASL interpreter. I had to take a few minutes to educate them. Even after I explained, the assistant still did not understand what I needed. Sigh.

I have to find a new neurologist. I am hoping the doctor I’m seeing can refer me to a holistic neurologist. At this point in my life, I’m more interested in just staying healthy instead of being put on meds to prolong the Multiple Sclerosis symptoms. I’m tired. I want to enjoy my time doing art, writing my book, researching stuff (my favorite thing to do), enjoy the beautiful SC weather and sites. We shall see how things go after my doctor appointment this week.

I fight and advocate for my health and for the things I need every single day in ways most people do not understand. When someone or a very prestigious healthcare organization brushes my needs aside and/or treats my situation and needs as not important, it infuriates me. The situations I’ve faced with my medical equipment along with the constant lies and excuses from this specific healthcare organization has me so upset and angry. Promises and offers not followed through sets me back to the point that I just do not have any faith in them, our government, healthcare, or health insurance. People with disabilities are truly treated like crap and are at the bottom of the totem pole. #mymsandme #msandmylife #mswarrior