MS and My Life

Category: Multiple Sclerosis

  • Reality

    Today, I had to get a few things from the store and I wanted to test my scooter because I had it repaired. I took a shower the night before so I would not be exhausted when I went out.  I was able to tackle one store, but the struggle started. I had a hard time with my legs trying to get in the car. The second store, I just had my friend get the three things I needed, I stayed in the car trying to get my left dead-weight leg working. The third store I was able to get out and get things I needed, but the legs were still not cooperative. BTW my scooter is still not right. Argghhh!!

    Then, the thinking started. I thought about what I missed. The simple task of just going to the grocery store to get a few things, by myself. Just getting out and doing stuff , those days are over. I have to go with someone. I have to plan ahead, before I can even schedule something. I have to make sure I don’t run out of things because I can’t just get up and go. Reality has set in, I’m in a very different place now in my life. I have to accept it and just realize this is my reality. My MS will not make me bitter, jealous, and want things I can’t have. Bound and determined not to let my MS kick my butt!

  • Sometimes I Wonder

    Sometimes I wonder if people really understand what Multiple Sclerosis is and how it affects my body? Lately, it’s like I’m constantly having to explain why I’m not walking well, you don’t look good, or why I can’t type 40-50 hrs a week on the computer. I get answers or comments from people – you’re getting worse, you should turn yourself in to the hospital so they can assess and diagnose you, and then you will become a ward of the state. After the diagnosis, they will put you in a nursing home. I’m just wondering do people realize how cruel and disheartening this sounds to me? Still staying strong and bound and determined not to let MS kick my butt!!

  • New Doctor

    I went to a new doctor this past week because I moved recently and needed to setup my healthcare team.

    Interesting visit, I do have mixed feelings about the visit. Doctor asked me how old I was 3 times from the time she walked into the room until she started asking about my health. 

    She raised her voice at me when I told her my last A1C levels. 😡 She has no idea what I’ve gone through in the last 10 years. She asked, why I’m using a scooter if I’m just diabetic? 😳 Loudly says, I DISAGREE WITH THIS because I am not able to test my sugars because of my hands 😡 . The nerve pain is not from the MS, it’s from the diabetes, WHAT!!!! 😡 I said I’ve had nerve pain for years prior to becoming diabetic. She says, I’m not sure about that. 😡 please keep in mind this idiot doctor has no prior health information from me. I’m brand new! 😖

    The outcome: the loud-ass idiot doctor got calmer when I said I have MS, was diagnosed with diabetes from the meds that I took for my MS (which she agreed about the meds causing diabetes ). I took the A1C test- it showed that I was 2% lower 👏, and the scales show I lost 13 more pounds. Also, I accepted increasing one medicine to try and lower the A1C more in the next 3 months.

    Bonus: there was a pharmacist on site. Awesome personality, much calmer. We talked about a new type of meter to try that already has the strips in it, and a better lancet pen that I can use and it won’t be a struggle to use because of my hand issues. It’s a work in progress.  We discussed other medicines to try for later if the increased dose for the one meds don’t work in the 3-month period.

    Last: I asked for referrals for: neurologist, podiatrist, and ophthalmologist. Looking forward to those appointments  hope they’re not idiot doctors!

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

  • A New Symptom?

    I discovered a new discomfort recently. Been through the MS Hug (terrible nerve pain around the abdomen and back area), going through brain fog (just so tired cannot focus, yesterday 5/31/17 was a doozy), dizziness off and on, walking issues, hand pain, now my legs feel like they are badly sunburned. Trying to decide if it’s stress from school, work, and stuff. School so close!! Graduation 6/5/17. Bound and determined not to let MS kick my butt!!

  • New Medicines

    I received an alert about new medication out there for all relapsing symptoms with MS. I was excited then depleted. What I don’t get is WHY would someone do this, having MS is hard enough without all this other crap happening. Instead of focusing on a more promising 2 year study for a treatment such as stem cell they make drugs. Bound and determined not to let MS kick my butt!!

    Here are the side effects:

    When considering LEMTRADA as your relapsing MS medicine, it’s important to discuss potential common and serious side effects with your healthcare provider. In two 2-year clinical trials, LEMTRADA was studied in over 800 patients.

    Most common side effects of LEMTRADA:
    😖😖😖😖😖😖😖😖😖😖😖
    rash
    headache
    thyroid problems
    fever
    swelling of your nose and throat
    nausea
    urinary tract infection
    feeling tired
    trouble sleeping
    upper respiratory infection
    herpes viral infection
    hives
    itching
    fungal infection
    joint pain
    pain in your arms or legs
    back pain
    diarrhea
    sinus infection
    mouth pain or sore throat
    tingling sensation
    dizziness
    stomach pain
    sudden redness in face, neck, or chest
    vomiting
    😖😖😖😖😖😖😖😖😖😖😖😖

    These are not all the possible side effects of LEMTRADA. Call your healthcare provider for medical advice about side effects that bother you or don’t go away.

    Monitoring is just as important as getting treatment. While LEMTRADA is given in just 2 treatment courses over 2 years, regular monitoring is very important because some of the side effects of LEMTRADA can happen months and even years after treatment.

    Serious side effects can include autoimmune diseases, which may cause death. These may include blood, thyroid, and kidney disorders (i.e., anti-glomerular basement membrane disease). Kidney disease can lead to kidney failure needing dialysis or transplant and can be life-threatening if untreated.

    😖😱LEMTRADA may also be associated with some kinds of cancers, including skin cancer (melanoma), thyroid cancer, and blood cancers (i.e., lymphoproliferative disorders and lymphoma). 😱😖

  • The Struggle is Real

    Nothing like trying to sweep up a spill of blueberries that were knocked off the shelf in the refrigerator with a physical handicap involving balance and mobility issues.  The biggest issue is getting the broom and dustpan, (note to self: buy brooms and dustpans for each room – not logical, yes I know), while holding onto the counters and trying to sweep round and roll-ey (yes, I know, not a word) food objects onto a dustpan and they keep rolling off because I’m using the dustpan to balance too , hence the struggle to cleanup takes 4 times longer and the blueberries are under things cannot move or reach. Now after all that, I’m exhausted.  The struggle is real. #mymsandme

  • Drastic Move Back Home

    Well, it’s been 2 weeks, 02/11/17, since my drastic move back to Michigan from Ohio. The move came with a lot of anxiety, stress, sad and good feelings. My biggest concern was the MS and how I was going to be affected with the move and school. School!! I’m thrilled to say in spite of everything going on, I passed the class with a B and I’m happy. It was a very tough class with health analysis research and statistics was involved .

    When leaving Ohio, I had a minor incident at the old apt with frustrations of not able to help much and heavy mixed emotions which caused me not able to walk. Once I left, during the drive, I was able to relax some return to a calmer place.

    Now 2 weeks later, had a good two weeks, warm weather, in the 60’s, then bam, yesterday night. Wow! Talk about a huge spiral fall, left me in major nerve pain, my legs are spasmatic, and my hands with nerve pain, geez Louise, please give me a break. I’m kind of blaming the weather since it became so cold, quickly. I’m telling myself A LOT, I’m not stressed too much, I’m OK, it is the bipolar weather. 

    Trying to get breakfast, make coffee, took longer than usual. My left foot continuously drops, giving my big toe carpet burn. Debating to try and do art, but the pain is just 😱. Still, I will get through my day as always, bound and determined to not let my MS kick my butt!!

  • Ramps

    I left a message with a ramp company three weeks ago and did not get a call back. This past week I had a few minutes available to call back the same company that sells ramps for scooters, wheelchairs and other equipment for people with physical challenges.

    The rep asked me all kinds of questions that I could not answer. I asked if someone could come out to the apartment to inspect and see what exactly is needed. The rep just went ahead and gave me a quote over the phone. To install a ramp where I live: the ramp must be over 10 feet long because of ADA regulations. This quote was given to me without assessing the apartment and the equipment I use. The quote was $3,000.00. I was kind of annoyed and shocked.  I do not have the money for something like this.

    I contacted the MS Society and spoke to a MS Navigator. I explained my situation about the ramp and financial hardship. The navigator said that I needed to apply for a grant and would email me instructions and a list of companies in the area that sells ramps. I received an email that lists the same company that I just called! How does that help? 

    I still have to do all the work to accommodate my needs. So, what exactly does an MS navigator do for people who suffer from extreme fatigue, physical challenges and need more than just resources? I was told I need to find a case manager that will do the work for me, but no suggestions on how to find one. Hmmmm?!?!?! 

    I printed out the lengthy email from the MS Society which I’m positive the navigator just copied and pasted and will begin the long task of researching, weeding out companies and links that are useless, make calls and apply for a grant for financial assistance. I hope I do not become stressed and frustrated because this is going to take time, patience and waiting for answers. 

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

  • Blink of an Eye

    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

    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!!