MS and My Life

Author: Pam Groth

  • I Am Me

    I drop things easily, sometimes when I’m working, sitting in my chair – I fall over. When I’m typing for work, I think my fingers are working, they’re not.  When I receive packages with art supplies or envelopes, I  need help opening them. When my friend Caroll Madden Schlorff and I shop for food, I zoom around in my scooter and she follows me with such patience, I’m lucky. When we get home, she opens boxes, packages of toilet paper and paper towels to have them available for me, it is easier for me to use things. When I cook something for myself,  after 10 minutes of standing, I’m hunched over and cannot walk well. My cat Opie, lays all 18 pounds of her on my legs, they become hot and numb, but that’s ok, she loves me. When friends want to call and talk, my hands don’t cooperate to sign, I’m fortunate, they understand when I get frustrated. All of these happen everyday, but those things do not define me. I am bound and determined not to let my MS kick my butt.

  • My MS Journey

    They say pictures speak a thousand words. I started back up with art with encouragement from friends. I’m doing a different kind of art these days, more of a mixed media thing. My hands do not cooperate holding paint brushes for long periods, so I use different medias to express.

    Here’s my 2016 MS Journey canvas

  • My Chair Lift Recliner

    I never minded the rain until:

    Power outages means being stuck in recliner chair lift that does not work without power. It does have (2)9-volt batteries in the charger, but no guarantee that the chair will lift up to a sitting position, it’s a one time deal that the chair might recline up. Chair lift recliners should operate without power with a safety release button or something so the person is not stuck when in a reclined position. I’ve been stuck twice in this chair. We have storms now, I’m afraid to go to sleep. I might be stuck if the storm causes the power to go out.

    I am thinking should I write a letter to the manufacturer about this or sue the crap out of them based on stupid engineering and design. Don’t get me wrong, I love my chair, but not when I’m stuck in it, have to pee, a 18 pound cat laying on me,,and have to call for help. Bound and determined not to let my MS kick my butt!! 💪❤️💪

  • 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!!