Showing posts with label mini rant. Show all posts
Showing posts with label mini rant. Show all posts

Sunday, January 31, 2021

Recovered, Finally!! Sort of

 It's been a long slow recovery from my T-CAR procedure. But I can finally say that I'm over the hump towards recovered from my procedure. It took the better part of two weeks to get my stamina back. I've just been recasted for my EIGHTH AFO in almost 9 years after the newest one broke bones in my foot again! SIGH! If I didn't need it to walk, I'd give up. So I', back wearing only my old (3rd AFO) again with no shoe. When I wear a shoe, my foot swells horrendously.

Interestingly enough, I got notification from Medicare that they have denied payment for that last AFO and Hanger can't bill me. So it should prove interesting how long they will work for free. Although they assure me they will make it right. No news yet on this newest casting payment. I knew it would happen eventually. So further treatments and adjustments are up in the air for now. I'm not trying to be unreasonable here. I just want to be able to walk post stroke without pain, pressure sores, nor broken bones. Is that too much to ask for? 

I'm so sick and tired of hearing every stroke is different and spasticity is an ongoing complication that I'm about to scream "Cop out." You know what the problem is. There's nothing new about it. Just fix the problem. I know I'm not the first. I surely won't be the last. Sure, I would make it easier on everyone except me and just stay in a wheelchair, but I refuse!

For the past month, I've seriously been considering a nursing home placement for me. But I'm too mentally aware for that. I've considered assisted living too. It would take every penny I get, and then some. I'm just at the point where, even with a roommate, I no longer feel able to live by myself. Yes, I've even looked into a senior living type housing. I'm tired of ending up on the floor and waiting for help. Of course a properly fitted AFO would go a long way in fixing this problem too. The waiting lists for these other options are long.

Does it sound like I'm frustrated?/ I am. It would mean leaving the lifestyle I love behind and preparing to die. Or at least that's how I see it. Am I really ready for that? No, not really. I still think of myself as young-ish and full of life. There are still things I want to accomplish in this life. I just have a body that's defunct. In reality, I've had a body that's defunct since I was 26 years old, but I've kept going and doing. I just know that if I'm going to continue living this lifestyle, I need a break for the good.

I told Hanger that they had this one final opportunity to make my AFO right. I've been more than patent. I've given them the seven years I've been here to fix my AFO issues to no avail and I'm still using the articulating, ill-fitting AFO that I started with. Now, that Alliance has opened up shop, I'll be going there next. I've heard nothing but praises for the tech over there. I have nothing to lose either.

Nothing is impossible.



Sunday, December 6, 2020

Sunday Stroke Survival: I'm Back!

 Well, sort of. I'm still using the HP streaming "computer" with a 256 gig SD card to download all the updates and move files over to it so it's workable. Even with the black Friday sales, I couldn't buy a new or refurbished computer with the property tax due too. But, the SD card was less than $40 so I can start blogging again.

While I was down with computer woes, Kassity had her puppies November 1st. She had ten! Seven girls and three boys. Within an hour of being born we lost one boy and a girl leaving eight. All eight have gotten huge over the last five weeks. They now weigh about five pounds a piece. They have taken over the living, dining, kitchen. and breakfast nook. Both bedrooms have boards to prevent their access to them. They are constantly underfoot climbing our legs for attention. Kassity has weaned them early. She wanted her freedom from them. Now, they each have a small stuffed animal to play with. They look so cute carrying them around the open area. One minute they are cuddling with them and the next, the pups are shaking them trying to "kill" them.

Walking post stroke has been precarious. It's hard carrying the fabric tote with five splits (6"x 8"x 18" about 8-10lbs each) of firewood normally, but with four to eight puppies swarming the feet, it gets even more problematic. I use extra care when walking around them. I make sure I can hold onto something otherwise I'd trip and fall, or step on one of them.

The puppies are fascinated with my AFO. And no, I got my new one but it doesn't fit right either. My new shoes are on back order until the 15th. The Hanger folks refuse to adjust the AFO much without the new shoes. Frustrated, I lashed out at her. "All I want is to walk without pain! Is that too much to ask for? Can you do that or not?" In rare form I asked, "If the foot was amputated below the knee then could you build me a foot that worked right? I doubt it." I never had so much problems with Hanger in my old hometown as with this one. I've had a once a month, or every three months standing appointments with them over the last three years. We're driving 60 miles round trip with each appointment to boot. My frustration load has tipped and the end is not in sight. 

I hate this going around and around for months and only fixing the problem in small amounts. It's like going to get new glasses and you are looking at the eyechart with that machine flipping lenses, and they ask better or worse? Once I answered neither. The optician said I had to pick one. But I had answered truthfully the first time. That's about how I feel about Hanger now. I can't even go to the Hanger back home because the tech I had all the same problems with her not listening to me for two years is now head of that clinic! GRRRRRRRRR!

I talked with one of my neurology PAs last week when I had my Botox appointment and told her about my frustration with Hanger. She asked me whether I had tried Alliance Orthotics? I honestly never heard of them before. Have any of y'all? Do they listen to you? Can they really fix/build an AFO that works as advertised without causing pain and pressure sores??

Is walking without fear of falling with a spastic foot and ankle an impossibility for an AFO? If so, tell me. I'll make an appointment with another orthopedic surgeon tomorrow to schedule an amputation. I'm so tired of dealing with this! I mean I've been fitted for 6 AFOs (with the possibility of a 7th) in the past 8 years! All I want to do is WALK WITHOUT PAIN!! <stepping off the rant box>

The Botox worked fabulously! I was fantastic to be able to lift my arm above my head again., The return of the trapped shoulder pain and strong muscle spasms didn't really return until Thanksgiving. My appointment for the last set of the year was on Friday. There was an additional 100 units for use in trouble spots making this dose 400 units versus 300 units. It was fantastic to lift my arm above my head again. It's been since June of last year since I've been able to do that. I did manage to straighten my elbow to 170 degrees. the last 10 degrees of straightening the elbow to full extension was hampered by a new contracted spot in the bicep. The wrist recovered a 5 degree rotation and extension. That's movement than I've gotten in four years in therapy. The extension capabilities gradually wore off as Thanksgiving approached and the Botox wore off. I was locked in again by the next set of injections.  The neurologist did say he if he could get approval for 1,000 units (he can't) it would fix me up royally. I looked at him in shock, "Really?" "Just about," and he nodded.

The three years off from Botox did reset its results almost fully. While I was hoping for the four or five months lasting power, I knew that my spasticity has gotten so much worse that it was a pipe dream. For now, I'll take what I can get even though I'm giving the doctor permission to inject poison into me. Emory is still on partial lockdown again with the new resurgence of a new strain of mutated strain of COVID-19. While the option of having the new Baclofen pump placement in Athens is available. 

I just hate breaking in new doctors into the mix. My "ologistitis" is getting to the tilt point with the addition of an Otolaryngologist (for my silent acid reflux), a gastroenterologist (for my silent acid reflux), and a vascular specialist in 2020. Okay, a specialist is not technically an ologist but he has a specific field of study and treatment so to me it counts as one. They join my cardiologist, pulmonologist, immunologist, neurologist, oncologist, and my endocrinologist.

I think y'all are all caught up again. I'll be continuing physical therapy again next week when the Botox kicks in fully again. If only my body would allow movement without Botox...a girl can dream, can't she?

Nothing is impossible.

Monday, April 30, 2018

AFO Update

Well, I went back to Hanger for my appointment. They examined my foot and leg carefully. They cut down the back of the AFO, and then decided to recast the leg for another AFO. I was told to wear the new, cut down AFO for only one hour a day. One hour?!! When you consider the time it takes to put the AFO on and the shoe, and changing it out for one hour a day, it doesn't seem worth it. Meanwhile, I'm back in my old AFO that causes stress fractures. Coupled with my busy lifestyle, it's a pimple on a boil.

I know there's tweaking that has to be done with any orthotic device. But having to remold a new AFO! Come on, really? I try to be a patient soul, but this is my mobility. and I'm dealing with pressure sores to boot. All this hardly instills confidence in this orthotics office. The Hanger in the Golden Isles got nothing but praise from me for 5 out of 6 years living post stroke. This one, not so much. Right now, I wish there was another orthotics place short of driving to Atlanta and takes my BCBS supplemental insurance. They all take Medicare.

Anyhow, the new AFO should be ready May 6th. We'll see how they do. What other choice do I have?