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myfshdlife · 2 years
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Long and overdue update:
As with a lot of us, covid kept my living life to a minimum. However, I was able to attend the postponed Abilities Expo that I was looking so forward to and I had a blast there. I'll put that in another post.
So, PT dilemma since I was able to go back after covid restrictions lifted some and our summer shenanigans was over.
Have a consultation with a new therapy company on Dec. 29th. Had to stop going to the one I was going to (same place as before), they kept pushing me past my limits to the point where I felt like my legs and body was going to give out at any moment and it did. I fell at my parents, thankfully I didn't get hurt and my dad was home to help me up. This wasn't even 3 weeks into PT, and I already felt overworked and exhausted, barely making it thru the day and falling asleep way before bedtime. I still am exhausted from the PT. I'm still dependant on my heating pad at night, massaging the cramps and spasms, now taking melatonin to help sleep thru the night and even then I'm waking up from my legs cramping up, and needing coffee just to get thru a busy day.
My neuro said no exercising, only stretchings. My ortho wants me using a wheelchair due to my back condition and I'm high risk for falls, and gave me a script for a custom built manual wheelchair. I was denied the wheelchair with the mentality of "we're going to get you walking like before", and ignored what my neuro said. They also kept scheduling me during conflicted times. I pick up my daughter from school everyday during a certain time and they kept giving me times where I gotta rush thru traffic to make it on time to her. They even gave me an appt at a time and date that I told them not to schedule me as I had an overdue dentist appt. Oh and can't make appts week by week basis, had to be month by month. Kinda hard to do that when you have appointments with specialists and they have hard to get into appts. I was told that if I have a schedule conflict, let them know. Had to cancel twice because of schedule conflict, and it felt like I was in the wrong for needing to work around my time. Um, a couple times, I had to play need for speed to get my kid from school bc the session ended literal 15 minutes before her dismissal. Oh and my car? It's a shared car between my husband and I, and they knew this. For some reason, it felt like I was inconveniencing the scheduling.
My last day there, hubs and I spoke up about the course of treatment and I felt like I was sugarcoated just for that day and take it easy but the next session was going to be right back to the plans. I also felt disrespected and demeaned like I didn't know what I was talking about with my own body. It's muscular dystrophy, it means my muscles are going to go bye bye for good, it doesn't come back, ever. I was literally being argued with by the one therapist that "all muscles comes back no matter what, just gotta build it back". What, keep working out like I'm a body builder while being ignored when I tell them my knee is literally buckling out and can't get back up (I was in a hoist) and they have me pushing and pulling while in it. This is what I kept doing every time I was there. The last day, they wanted me to stand up using my left leg despite my telling them it will not happen. "Oh we just gotta build back those muscles and retrain the muscle memory". My left leg and knee hasn't let me stand up on that side for 3 years now, it's just simply not happening, like trying to tell a dog to turn into a cat.
I was pretty stressed out with PT this time around and this attitude and ignorance with how MD deteriorates is why I stopped doing PT for so long. I waited til my ortho appt before quitting to consult the before and after. She was not happy that I'm denied the custom chair (my current is a basic loaner from insurance and not fitted for my needs) and that I'm ignored. She highly advised that I go elsewhere where I'll be heard.
I spoke with a friend who also has MD and they said occupational therapy may be the better option for me, not PT. PT has been known to deteriorate MD. The place I'm going to doesn't do OT at that location but doing the consultation to determine what is best that we both will agree on and go from there.
Webinar I joined this past Thursday was hosted by the FSHD Society and a specialist. This session was about knee hyperextension and knee bracing. Learned a lot, including that my PT was wrong this whole time, I should have been wearing knee brace more than just when I really really need it. Also, as much as my knee has progressed over the past 5 years, it's still in the mild hyperextension. The knee brace needs to be worn if I am to be doing prolonged standing and walking to stabilize my knee to minimize the risk of it buckling on me. I have two braces, I can use one for walking and standing, and the other for keeping my knee straight from bending on my prolonged seating to stretch those muscles out.
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myfshdlife · 4 years
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9.15.2020
It occurred to me last night thanks to a convo with a friend who's very supportive and encouraging, being in a chair definitely has a really good perk. I'll be able to wear flat shoes instead of wearing heels all the time.
Last month, I bought these flat summer sandals that has velcro straps across the toes and around the ankles for the trip to Wildwood with my daughter. I had a basic chair that I was able to use then before mine came in. I was too nervous to try and use the sandals during the trip due to being in a totally different environment with multitudes of trip hazards if I needed to get out while wearing something I wasn't familiar with. Now that I have my chair and with my husband's help, I can begin to wear them before it gets too cold. I'm really looking forward to being able to wear my combat boots again that I had for my wedding.
I'll still use my AFOs as well. I haven't been using them because I was JUST starting to be able to walk unassisted when covid shutdown started. My PT discharged me due to safety reasons since she didn't want to risk me and we had no idea what my respiratory functions were like. My husband and I were going to go to Island Beach State Park to continue practicing on the beach since it was the only beach still open at that point. We figured practice walking on the sand since it would be a tougher terrain than a floor to walk on (I prefer to just go for it) and if I fell, I'd have a soft landing. Three days after PT discharged me and my husband and I decided to go to the beach later that week to try it out, the state closed down the park. It did open back up for the summer season but by that point, people were flocking to the beaches and where would I get to park and practice?
So I decided to walk barefoot more than wearing shoes at all around the house since I'm home a lot. Definitely paid off not wearing heels all the time, I've noticed I'm beginning to walk a bit flatter with more ease. Definitely noticed it today when we went to Goodwill to look for a new pair of winter heels since mine are losing treads and the heels have that rocking to the side wear. He went in without me to look real quick and found a pair, came out to get me to try them on. The boots aren't as high heeled as mine were but I was still able to walk in them. That's progress right there. I used to need like 3 1/2 to 4 inch heels and now I'm down to 3 inch heels. I have a pair of 4 inch heels and the last two times I've worn them, I couldn't do it without holding onto my husband with a good grip. They were too high for me to walk in and I felt very unstable, almost like a newborn horse.
So can't wait to try this next step of shoes exploration.
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myfshdlife · 4 years
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Love my mask
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myfshdlife · 4 years
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9.14.2020
I know, haven't posted much of an update on my FSHD but since this covid pandemic, there's really not a whole lot going on other than getting a new wheelchair and now starting to catch up on appointments before the cold weather sets in. I plan on starting up my physical therapy again soon but not until it's chilly out because that's when my FSHD starts bothering me.
I had my first pulmonologist checkup appointment today but as per their requirement, I had to get a covid test done since it's a respiratory illness.
Covid tested negative. Pulmonologist went good, just gotta do a chest CT and a sleep study. She wanted a x-ray but wants a better image due to the FSHD and the x-ray may not show everything. The only thing I'm not looking forward to is that contrast stuff to drink so I'm guessing practice drinking fast lol.
No asthma BUT bc of the curve in my hyperlordosis, it is beginning to constrict my breathing space. Caught it in time and wolf and I agreed wheelchair more often to hopefully slow down the hyperlordosis progression rate.
So... Check out my new wheels! I plan to take off the arm rests but my husband wants me to keep them on. I feel really closed in and inhibited from moving my upper body freely. I'll give it a week's worth of rolling around to see if I can get used to them, but I'm pretty sure they're coming off regardless. I don't even use the arm rest in the car. The problem is, the arm rests unlocks in the front and hinge backwards so to fully remove them, it's gotta get unscrewed off. I plan to have a backpack on the back of the chair but if the arm rests are hinged back, they would block my bag access. Same if the arm rests are down since I can't lift high at all so I wouldn't be able to lift my bag over the arm rests. Oh well, if I'm that determined, I'll just go to the wheelchair place and have them do it for me.
I've been looking into accessories for the chair and holy crap, they are not cheap. No wonder why wheelchair users resort to the bicycles for them. A wheelchair cup holder is like 50-60 bucks and they're not a permanent fixture, they clamp on. A bicycle cup holder is less than 20 bucks and do the same thing. The only accessory I'm probably going to get is a set of push rims cover for my hands if I can't do the gloves.
I am looking forward to the shoes part tho. Already got me a pair of flat sandals for the first time in like, 17 years.
Check out the new wheels!
Also pictured are screenshots of accessories I'm looking into to find cheaper alternatives.
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myfshdlife · 4 years
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Haha yup
For someone with a muscle disease, I sure do say “fight me” a lot
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myfshdlife · 4 years
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1/7/2020
Didn't get a chance to type for yesterday so here it is.
Still enjoying my therapy, Heather keeps changing up the routines and adding new things to try. I'm still going 3 days a week and have them all lined up for the month. Since my husband and I haven't heard from the Mobility Clinic for my braces for some time and they answered ONCE and the lady said she'll have someone get back to us and never did. So before we call Medicare again to complain of this, I decided to bring this up to Heather and she wasn't too keen on the fact that I'm STILL waiting for this to be rectified and so she started making an attempt to call them while I was there but no answer. She thinks it's because they're not open before 10am but she's gonna keep trying.
I asked her about me getting the flu shot since it is important that I get all the info I can get, even if it's for later down the road. She said to go to my MD specialist only to get them done since it does penetrate and inject the fluid into the muscles itself and it's better that I depend on herd immunity for now. I should consider it for if and when my MD makes me immunocompromised or have respiratory issues.
I also saw my knee specialist Amanda as well and fortunately my tendonitis has gotten better but we're now watching my right knee as well. I updated her on my Mobility Clinic issue and how Heather is calling them on my behalf. Amanda said that she and my back doctor will also be making calls on my behalf as well and she already asked their director if she could look into them as well. Hopefully something will come of this and from here on out, since the clinic do home visits, I'm gonna see if I'm able to have the meet ups at my therapist's as a 3rd party witness sorta deal.
I gotten a new referral for more PT time so it's covered ahead of time for insurance purposes and I also gotten a prescription for a wheelchair and I'm hoping it can be used for a more customized one so we'll see. It's time that I start doing what will be easier on my body to also help conserve energy, strength. I'm literally struggling to walk now and it wipes me out so bad to do basic food shopping even with my husband.
At my knee appt, my daughter spoke up and told Amanda how it is difficult to just do a simple Walmart trip. Most of the time, I send her into the Dollar Tree for me because I just can't walk it. I'm gonna make sure Heather knows that once I get the chair, don't go easy on me, I still want the exercise to counteract the constant sitting around.
Pic is my wheelchair script, blurred for privacy reasons.
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myfshdlife · 4 years
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12/16/19
Had a follow-up appointment with Amanda about my knee. I have a slight tear in the meniscus, she said we all get it and it's not worrisome. However, that MDA dr did do a bit of damage, fortunately it's nothing serious at all. I have tendonitis to the patellar something (I forget the whole thing, note is in the car). In normal people, it takes about 1- 2 weeks to heal and it's been a month for me. She wants me back in a month to see if it got better or not since muscular dystrophy takes longer for healing processes.
Amanda is concerned with the painful clicks I get in my knee once a week and I need to keep track of the count of them. I call them clicks because it feels like a crack-pop-shift combo and it happens when I just simply stand. I've been having the clicks for a long while but lately they're painful and can make my knee give out bad. I almost fell in Walmart two weeks ago because of a bad one and good thing I was already leaning on the cart, just couldn't move my leg for a moment. Had to have my husband "kick" my foot slightly to get me moving.
For now, I have to keep it braced during PT and ice it after each sesh and keep using the heat at night, and wear it if I'm out shopping as well. Amanda did say it's good that I try not to "overuse" my knee brace, that way my knee/leg muscles don't weaken from being lame. I can't take anything because of this antibiotic for my stomach. Not even motrin, tylenol, naproxen, etc.
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myfshdlife · 4 years
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12-12-19
Haven't been updating anything lately nor have I been going to therapy this week because I came down with a seriously nasty cold and I'm not about to contribute to passing it around in the building if I can help it.
Yesterday I went for the MRI appointment on my knee. The first time all week that I felt even remotely okay. No worries, I purelled my hands and asked for a face mask the moment I stepped into the office for precautions. I damn near fell asleep in the machine. Must have been the combination of the vibrations and the air filtration system. I did not want to leave lol.
Tomorrow I'm going to try and make it to therapy, my husband grabbed extra masks so if need be, I'll wear one there.
Ugh, damn this cold...
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myfshdlife · 4 years
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12/4/19
Physical therapy went really well today. The exercises were easier to do, and I even did two sets of 5 sit ups. Granted, they were assisted but still, I did them! I'm so proud of myself for that 😊
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myfshdlife · 4 years
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1st Day of Rehab Exercises part two
12/2/19
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This exercise is to help condition my hands into opening jars and bottles easier. It's weird but I can see why this would help.
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She gave me one of these rubber jar openers to help me with getting a better grip on opening jars.
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To finish, she sent me home with these exercises to do at home as well as tell my husband twice a day "I got this".
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myfshdlife · 4 years
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1st Day of Rehab Exercises part one
12/2/19
Not bad at all. Heather did what she promised, she had me working out my body. My exercises were challenging but not difficult and she set me up with small reps to start so I wouldn't be in pain. I'm not in pain or achy yet but did doze off twice so far this evening lol. I know I'm gonna feel it tomorrow but it'll be worth it.
I can't take pictures of my exercises due to privacy policy and I like that to be honest and so I spent a bit of time looking for photos on google.
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Started with 6 minutes of the bike machine, had to remind myself to go at a slow pace just because it felt easy to do.
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This is one of my favorites. It helped stretched my arms, shoulders, scapular muscles and armpit muscles. I rarely have my arms up above my head so this was an exercise on a therapeutic level.
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Another favorite. This helps me round my lower spine forward, stretching it out and basically feeling like it's reversing the bending backwards curvature I have. Hard to explain but omg, I melted into the ball of relief.
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This is already proving to be a challenging set of exercises. I'm set up at the walk bars for safety. On the blue foam mat, I have to do a march, lift my foot behind me as if I would kick my own butt, and swing outs. Once I tried the sets, they became a bit easier to do. The muscle memory for the back kick was not there, I basically had to learn to do that all over again.
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I do not like this one all that much but at the same time, I want to have this set up at home so I can accomplish this. I have to hold onto the straps, squat as if I'm gonna sit down but instead, I have to hold it and stand back up. One issue is that I can't hold onto the straps like a normal person with my hands, I have to use one strap and link my arms through the strap and hold my arms. Heather was cool with this as it meant safer for me to do this exercise. However, I can't stand back up at all but she's so patient with me and eases the difficulty by holding the back of the jeans and belt loop to help "lift" me back up.
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With this and Heather's help, I do some crunches to try and kick start my abdominal muscles into shape to restrengthen my core.
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myfshdlife · 4 years
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My first visit with Kessler Rehabilitation
11/27/19
I freaking LOVE it.
My therapist is familiar with neuromuscular conditions and for once, I have someone who pretty much knows what I go through without having to explain everything in full details. She'll finish a good portion of what I'm saying and I'm like, yeah! She even told me that she wouldn't doubt that the gallbladder surgery is the biggest reason I've progressed so much this year because of the anesthesia. She said muscular dystrophy and anesthesia do not go hand in hand at all and it's not shocking that I had the set back I did.
She's very gentle, she's aware of my knee and back issues. She is going to try and get things going on a pediatric sized knee brace for use outside of the KFO brace, a raised toilet seat since mine is so freaking low, splints for my hands, and a fitted wheelchair. She asked if I wanted a power chair but I said no, they're hard to be approved by Medicare and plus, my apartment is way too small for one (and my car).
She did the evaluation, measurements, tested my mobility and strengths. She went into details of what I'm gonna do, what is expected of me, made up a goal plan, etc. She wants to help me get out of this funk I've been in. I admitted on the paperwork and to her that I've been dealing with depression because of the MD kicking my ass and she assured me that she will help me get me out of that funk and find ways to get ahead of the MD again. Yes, me, I've been dealing with depression because of my MD being relentless on my independence. I'm not ashamed to admit that now.
This woman is seriously who I need in my life right now. My husband cried 3 times out of relief and gratefulness and me? Well, if you know me, I rarely get up at the crack of dawn for any appts before 10am. My next two of three appts are at 8am and 9am because I just don't wanna wait two weeks for later appts.
I can't wait for Monday, I really really can't wait. She's like, my MD angel right now.
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myfshdlife · 4 years
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11/26/
Tomorrow I start my outpatient rehab program! I hope they really do help me out. I was told this location specializes in neuromuscular issues so there's that. Tomorrow can't get here soon enough.
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myfshdlife · 4 years
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11/25/19
Can't wait to get the MRI done on my knee, so tired of not knowing what's causing the new pain I've been having. It might be more than just the hyperextension, my knee dr thinks there's something else going on and we might have an idea but gonna wait for the results before making the assumptions. It's so bad that the pain wakes me out of a deep sleep if I manage to sleep long enough.
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myfshdlife · 4 years
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Marlon Brando and Marilyn Monroe worked as ushers at the Actors’ Studio charity benefit for Muscular dystrophy on 12 December 1955. These publicity photos were taken by Milton Greene.
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myfshdlife · 4 years
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For someone with a muscle disease, I sure do say “fight me” a lot
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myfshdlife · 4 years
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Things people don’t talk about enough:
Blaine wasn’t researching his own symptoms before injecting himself with the cure.
He was donating the money he made through the brain business to charity.
This particular one was to fight Muscular Dystrophy… which was implied to have been his grandfather’s condition.
He got his affairs in order. Told Don E. and Chief to stop dealing Utopium, for their own safety. He thanked them for sticking by him.
He asked them to keep the brain business going, for the sake of humanity.
Why would he care, if he was (pardon the quoting of the theme song) already dead?
Getting his throat slashed by Mr. Boss was a wake up call, he should have died then. 
So when he thought he was actually going to die? Either from reverting to zombie form, or injecting himself with an untested cure?
Honestly? ….Blaine started to change his ways even before his amnesia.
EDIT: While you could blame this behavior on the last brain he ate, a man who was bicycling cross country for Jerry’s Kids, a MD charity…
I honestly like the vagueness of it all. You think Jerry’s Kids would then be the charity he’d have in mind. Pun intended.
He also had the papers for Chief and Don E. drawn up before he ate the brain, which implies he had a plan.
I still say it’s a plan he thinks of gets it as Major is leaving Shady Plots.
His expression is kinda telling.
It’s almost like Major inspires him to not be a dick? >.>
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