Blink of an Eye

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It is important for me to accept and understand that anyone’s plans and goals in life can change in a blink of an eye. Things can be for the good or for the bad. Life can come with ups and downs. I had things I wanted to do. Travel, be a chef, write a book, have 4 kids, be with someone, live wherever I wanted…

I never imagined that at my age, I would be living on social security, struggling to survive, always in fear that the government can take all my earnings away because I didn’t follow their rules for something. I never dreamed how hard it would be to find a place to live, get groceries, do laundry, clean, go out, cook, bathe and even type. I always thought I will be able to do all of those things because my MS was not like others. I never will be like those who are in wheelchairs or bed ridden. I now have to find people and resources to help me with the simplest tasks. Today, I just found out that the person who helps me clean my apartment cannot do it anymore. So, now I must find someone, along with looking for a ramp so I’m able to go outside, work, studying for class, look for resources to help me, the list goes on and on. Typical day for me, stay strong, do not let the fatigue take over. Keep smiling…

Because of all of these struggles I try and learn to appreciate the things we often take for granted. Waking up in the morning and having breakfast (my most favorite meal). I am able to see, I can still walk some, I can smile through my pain, I’m still able to help others, and most of all I am alive. When things don’t go as planned, I try not to scream “why me” or “this sucks” I work hard at not becoming angry and defeated and try to find peace, joy and always remember there is hope. I will be ok.

Bound and determined not to let my MS kick my butt!

Physical Therapy

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Well, today was my last physical/occupational therapy session. I’m not sure if I am better or worse off than I was before. I learned some new ways to do things, but the bigger challenges as a physically handicapped person still is a huge problem. Getting in and out of the bathtub to shower and my car is still a challenge. I thought it was amusing when the therapist said to use a step stool to get in my car. I cannot lift my left leg at all to go beyond 3 or 4 inches. The belt they provided me doesn’t really guarantee me getting my legs in the car on bad days same thing as the tub. I was told by the therapist, I’m sorry I wish I had an answer.

I asked about finding a handicap accessible apartment with some pretty basic needs – walk in shower, washer/dryer hookup in apartment, dishwasher, central AC. Therapist said unfortunately not all HUD housing has those things you need, that I can afford. Unless a nurse comes out to the apartment, not much can be done . No suggestions were given or resources, just the standard links I’ve been given or already know or found out about. Waiting list is still up to 3 years, living with senior citizens  (which is not a bad thing, but it would be nice to live with people my age), living in an apartment facility for developmental disabled people was another recommendation. 

I’m disheartened. I’m back to square one looking for things I need. So, as an advocate, I need to roll up my sleeves, do some more deep research, and start kicking people’s asses so I can take care of me, as we know the MS is unpredictable every day. I need to figure out how to make sure I’m taken care of so when things do progress, I’m not stuck.

Another thought, maybe start a agency that actually provides solutions to the needs I just addressed, have workable and usable resources that actually are solutions that don’t take 3 years to do or get, because doctors, neurologists, insurance companies, and other healthcare professionals do not have the resources or real knowledge to provide because of insurance rules, Medicare and all the crap I’ve been working with. Don’t get me wrong, I’m grateful for what I was given but it needs to be more than what I’ve been trying to find and do for the last year. As my motto is, never ever let my MS kick my butt!!

Chair Lift Recliner

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Just got into a long heated discussion with my insurance company regarding medical equipment that I need, that was prescribed by my neurologist. Turns out Medicare does not cover shower seats, chairlifts, recliner type chairs that turn into a bed, because it’s not a medical necessity. So now, I must fight and figure out how to purchase a $1500 medical related type chair/recliner that lifts, without having to struggle to get up because my legs do not cooperate. United Healthcare just said to me, just get a hospital bed that will solve your problem. What’s interesting about this whole thing is I can’t even lift my legs to get in and out of the bad, to get up or go to the bathroom fast enough without having an accident. So how is the insurance company’s suggestion effective?

Taking Life for Granted

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I think we take life for granted. I know I did. Years of seeing people in wheelchairs, senior citizens struggling to get food from their scooters or trying to find a handicap parking spot, watching people become agitated waving at handicap people impatiently out of the way, because their time has been interrupted by someone struggling to cross the sidewalk or walkways, and even family, partners and friends change.

Today, I’m in this very same situation. I cannot go far without help. I am now at the mercy of others to see if I can get a ride, go food shopping, get a couple of loads of laundry done, and the opportunity just to get out into a different environment. I must schedule, plan, ask, pay, push my pride, dignity, independence aside, and learn patience to wait just to get the simple everyday things done and the things we’ve taken for granted.

If I had the chance to go back and live my life over, things that happened in the last twenty-five years would definitely be planned differently.

Comparing Diseases

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Typical day: I know that people mean well and they tried to understand what I go through every day, but there is no comparison with multiple sclerosis. People who have been diagnosed with multiple sclerosis have different symptoms there are some that are similar, and there are some that no one had ever experienced.

To compare a disability, handicap, chronic illness and paralysis is not something that we take very lightly. What I go through every day is not something people understand and it does not feel great when other people compare themselves to me. It makes me angry sometimes because this is with me every day, and when someone has broken or sprained their leg or ankle, they go out of their way to tell me, yeah I know exactly how you feel when they don’t. Today is a hard day because  I am still suffering from brain fog and burning eyes from my classes last week. I look like I smoked a lot of joints which I didn’t, but that’s what I look like. I’m still here and kicking some MS butt!

Showering

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Typical Day: Showering used to be one of my favorite things to do and always took for granted that I would never ever go a day without showering. These days, I’m grateful I can take a shower once a week, sometimes a week and half. My MS does not allow me the luxury of showering often. I depend on body wipes, hair accessories, Gold Medal powder, and deodorant, often because taking a shower is difficult.

Biggest obstacle: climbing over the bathtub. It’s a mountain. It takes me almost a full 5 minutes just to get in the tub on a good day. My left leg locks to the point I have to drag it over the bathtub wall and position my feet so that I do not slip and fall. Water temperature is another thing. I used to love taking long hot showers. Today, it’s lukewarm water, wash and condition hair, soap to clean the body, rinse and get out asap. There is no time to stand there and enjoy. I’ve been lucky that I have not had the need for assistance with another human being to get out of the shower. I dread that day.

When I am done showering, my body feels like a rubbery mess. I have to sit down on a chair or the toilet seat shivering to dry off and struggle to get my clothes on. This takes a good 10 to 15 minutes of struggling, cursing and wanting to rip my clothes just to get the clothes on. I am trying to lift my left leg to get inside my shorts or pants, my left foot just sits there. Then I need to grab the bars to get up and put the rest of my clothes on when I am hunched over because I no longer have support to hold my body upright. Sighs of relief once I am done with that. Then, we have the hair. Combing out my hair, adding hair products because I have this uncontrollable frizzy mess, then the final hot blow dryer that makes my body hotter.

Now, I need to get from the bathroom to my recliner. My left leg is no longer working it drags on a wood floor and I hobble about 10 feet to the chair that takes a good 5 minutes. I want to cry, but I keep pushing. I sit down and breathe. I am now stuck in the chair for a good 3 to 4 hours to build up strength to walk around with my walker.

I think about this as I am writing and applaud that I have once again am kicking some major MS Butt!

Sensory Overload

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Typical Day: My sensory overload. My MS affects my sensory overload on a daily basis. Sometimes the noise from my cell phone, text alerts, the beeping, the vibrating of the calls, video phone ringing and bright lights just makes me feel overwhelmed and my brain cannot process everything. Sometimes people text, text, text instead of just one text (all the information on one text) drives me insane. Even turning on the lights makes me cringe. I love watching tv in the dark. It calms my feelings and my brain can finally relax.

When I go out to the grocery store, restaurants, social events or even attend workshops I become overwhelmed by the sounds, people talking to me, pulling me in every direction. My brain starts to spin. I have to look away to communicate and process what I can see. I don’t wear my hearing aid often, I can’t stand the sounds some days. The noise vibrates through my head and I cannot grasp what I am seeing or hearing. Sometimes I feel like I am going insane. The buzzing in the ears start, my body becomes all hot and inflamed, my hands cannot sign or type, everything becomes wavy. Some people accuse me of not remembering things and often use the memory issues as a way to prove a point or win an argument.

But once I am able to do down time, I can process the information and remember again. Sometimes. Still a warrior and kicking some MS butt!

Daily Struggles

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Typical day: the impossibles every moment of my day and yet somehow as the sun goes down, I always make it. When laying in my recliner, feeling beat up, worn out, battered and bruised, taking a minute to look back over the day, I realize that the my inner warrior kicked some major MS butt. 💪I pushed through my day with my legs and hands cramping up, tingling, hot/cold sensations while my head is buzzing, spinning and feeling lopsided. I feel like I’m on a high speed roller coaster ride. Oh, and then trying to speed dash with one leg dragging sometimes leg locking to the bathroom…well, almost. But I’m so thankful it’s not a major mess and I have a change of clothes in the bathroom, and no one even noticed that before I was wearing a pair of black shorts instead of the blue jean ones I’m wearing now.

As the day progresses I keep trying to sign, type, study, work, think, feed the cats, cook, but struggle making mistake after mistake. It takes great skill to stumble over words then turn them into something that makes sense. I have gotten pretty good at word replacement and hand gestures signing you know, you know. I’ve become an expert in judging if I can grab the next available piece of furniture, the wall, towel bar, or counter so I don’t fall.

Junk Food 5.25.16

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Hello everyone, my name is Pam and today I want to talk about my stupidity. I am a strong believer in eating healthy food. Food heals you; it makes you feel better and healthier. I try to educate everyone about food and wellness, things like that.

This week I just finished my class. It was very hard class and I was very happy that I got an A on my paper. It was a tough paper. I needed to go pick up a few things for the day and I decided to buy junk food. I do not know why I did that. I felt like I deserved it and it was a bad choice. I should have done something healthier than reward myself with food.

I bought baked grilled cheese puffs (shows the bag on the video) and it says it is Non-GMO, no corn syrup and it is gluten-free certified. I bought this at a health food store yesterday. I also bought Enjoy Life double chocolate crunch cookies (shows the box on the video). It says that it is Non-GMO, gluten free, wheat free, dairy free, so I bought it. The box says guaranteed – no nuts, tree nuts, wheat – all of that.

I ate the whole bag. When you open the bag of the cheese puffs, it is only less than half full, and the rest of the air. During Dancing with the Stars, yesterday, I was ate them in one sitting. The cookies I ate five cookies. I cannot remember.

Today, I am in pain. I cannot walk. I feel so blah. Even though all those things I ate show they are healthy and it is organic. All of these things in the food, I cannot have, sugar, wheat – all of that because it affects my MS. I have multiple sclerosis. I have removed these things from my food plan. I fell off the wagon.

I am miserable just because you buy it at a health food store does not mean that it is healthy for you. Just because it is says that there is no wheat, sugar, dairy, nuts – all of those things, it does not mean that it is healthy for you.

If you have an autoimmune disease like MS, celiac disease, there are many diseases, oh fibroid myalgia. It affects our bodies. These things are not good for you. I am suffering for my choices yesterday and it does not feel good. I am miserable. I thought I would share that with you, to share my story because I am always lecturing to watch what you eat, look at the food labels and I realized that I am human, I make mistakes and I paying for it today.

I thought I would share that with you. Hope you have a wonderful day. Thanks for watching.