Redefining Disability Project: Post # 18

http://rosebfischer.com/2014/07/01/redefining-disability-an-interactive-blogging-project/

When you see this picture, you know it's Tuesday and time to answer another question.

18. Have you experienced preferential treatment because of disabilities?

Yeah, I have...

• I get to vote by absentee ballet, or the earlier than election day. I have been permanently excused from jury duty because the chairs cause me back pain. Not to mention I used to be a police officer and know 90% of the attorneys in town. 
• We get audited by the IRS and State Tax people because of my medical deductions almost every two years and, get a bright, shiny star for my efforts in keeping my receipts and documentation.  
• I have a nifty, blue placard that I can hang from my rear view mirror that let's me park close to the entrances of places. 
• That placard even allowed me to get a specialized/vanity license plate on my car too. At no extra cost to me. All because of my and my husband's disability.
• I'm allowed more time to do things in general. In fact I get tired of people telling me to take my time.

 Imagine that! Yes, I'm trying to be funny. Most disabled folks have the same thing.
All kidding aside...

• I have strangers offer to get or carry things for me. Actually the baggers in the  stores don't count in this instance.
• People hold the door open for me most places I go. This is both a courtesy and a royal pain because most of the time I have my cane hooked on my arm and am using the door to balance myself as I go through.
• I've had strangers ask if I wanted to go ahead of them at the checkout line.

But then again, this is the south with more genteel folk too. Even when my disability was invisible to
their eyes, I got this sort of treatment too. But I have watched customer service geared people tend to be more helpful and understanding when I ask for help now that I'm visibly disabled.

I'll be the first one to admit, as a transplanted northerner, that things are different than I'm used to. It truly is a slowly pace, manner, and language here. But I love it and claim it as my own except when I travel north of the old Mason-Dixon line. You'd figure with as many snow-birds and transplants would dilute the standard south, but you'd be wrong especially with the aged population like me. The young whippersnappers may mimic their northern counterparts too much. But I digress.

Preferential treatment may come my way because of my disability or my advancing age. Is there much difference between the way you treat the disabled or any person you view in respect...not that all disabled people are respectful. Some are down right cantankerous. I rarely am.

I don't mean to preach here. Well, maybe I do because I'm a minister, but I've always believed in treating people like you want to be treated. If the roles were reversed, I would still offer to help others. In fact, I still do when I'm able. I also believe that life runs in concentric circles. What goes around comes around. If I ignore someone in need, there may be a time that I need something and am ignored.

A prime example, my husband's hospice services. I've had my ups and downs with this service since I started on this journey a year ago with my husband. I know most of the employees. I've married them, counseled them, and just been there for them for the past.

Well last weekend a group of employees volunteered to come to my home, and clean up and reorganize it for us. I had tears in my eyes when my husband's aide locked herself in the main bathroom with a pressure washer and blasted all the tile work clean. This was something that needed to be done. How the employees, who understood my husband's condition, used only Borax, vinegar, and dish soap to clean with so he didn't have any adverse affects. How I was watched and asked where would be the easiest places for me to reach and what was the hardest things for me to do. I was treated with respect. Not just because my husband was a client and dying, but because they honestly wanted to help.

We were not singled out for preferential treatment because I was disabled. Yes, my husband was their client, but I found out from my sister and my daughter that they do this all the time because they care. All they have to know is that there was a need. After a year of being in and out of my house, there was a definite need. This truly is a company which stands behind their slogan of "Enriching Lives."

Do I believe I'm entitled to preferential treatment? Nope. To me, I'm still capable of giving so much and will continue until I draw my last breath. Does that sound like a contradiction to what I said about what goes around comes around. Nope, but it is nice when it happens. I expect nothing and get everything, but I always remain hopeful.

Sunday Stroke Survival: The New Therapist and Dry Needling

I'll bet y'all were wondering about how the new dry needling therapy was going. I haven't done an update since I've started it.

There was no doubt in my mind that my Botox was winding down prior to these treatments. My bicep, pectoral, and radial muscles were cramping and my range of motion was no longer gaining neutral positioning during stretching. That's with my OT at the hospital rehab doing all the work. The spasticity was returning.

My new therapist is a short and muscular sort of man with a cheery disposition. He has a Scottish brogue in his speech with a slight southern accent. Quite charming actually. I can understand why he and my speech therapist married. They share understanding, compassion, a genuine willingness to help others, great sense of humor, and a thirst for knowledge traits. They both are not afraid to tr ew things if it works even if he is NDT trained. People after my own heart. He is also the clinical director of his facility. Anyhow, I like him.

We spent a lengthy amount of time talking about the procedure and the science. Most of it was about documenting the journey, would I mind? Mind, me mind, don't make me laugh. If this works, I'll be shouting it from every rooftop and flooding the internet. He told me that there wasn't much information or documentation about how dry needling works for spasticity for post stroke patients.

I knew that from my own research. He was realistic about the outcome of the procedure and asked if I would mind being video taped for documentation. Eventually, he would get together with other practitioners and publish the results.

I went into this with an open mind with the hope for success tempered with possible failure as voodoo medicine as my old therapist called it. I rarely shot all hope in the foot or sabotage possible success. I am, after all, the hopeful realist. I am honest enough to reserve all judgement until after all the facts are in...that's one of the reasons for the delay in this posting.

He video taped me before he did anything for a baseline. I told him if he really wanted  baseline, we should have waited for two more weeks when the Botox was almost all the way out of my system. But he said this would work, and then he took me back into the treatment room. He mentioned me changing into a gown, but I pulled off my sweatshirt and showed him my tank top. I came prepared. Too many previous therapy sessions in the past.

My arm is more or less locked in a 45 degree angle due to the spasticity. It can be relaxed to almost straight at the elbow with enough gradual stretching. Unfortunately, it does not last more than thirty minutes and then the spasticity draws it up again.

He went to get his "bag of tricks" as he called his tote with needles and alcohol swabs. I've had acupuncture before so I knew what the needles looked and felt like going into the skin. I've also had EMGs before so I'm well aware of what those bigger needles and the fire they cause when they hits a spastic trigger point. And, I do mean fire up and down from the point of impact.

I've often said that a line of open communication was the key to getting positive gains. I also believe in getting every cent's worth of every dollar I spend. I explained this to him before we started. He almost seemed relieved, but he talked to me throughout the treatment anyhow. "Is it too much?" "Can you handle a bit more?" became a mantra of sorts in that Scottish brogue of his.

I felt him go through a vein and bounce the needle off a few bones a couple of times.That's how this differs from acupuncture for those that say this is just a glorified acupuncture. It's more like an EMG except once the needle hits the spot, it is manipulated in and out into the trigger point a few times. I can feel the muscle spasm immediately relax. Instant gratification as it is.

He did a couple of trigger points and then stretch the muscles. Each time he stopped needling and stretched, he got more and more of a response. It was fascinating to watch as if it weren't my body at all. But personally, I was amazed at the amount of movement he was obtaining. I left that first appointment in a state of shock.

The effects lasted until my next appointment a day and a half later. I walked into the rehab office with my arm fully out stretched at the elbow along my body. In fact, I've added tricep building exercises to my daily exercises to combat my arm falling without control.

So we started again. He asked about any after affects to the dry needling. I had a couple of small bruises from where he went through a vein, a little bit of nausea, and the painful muscles were relieved by a couple of bags of frozen corn. I found eating something helped the nausea. So now I eat before treatments and no more nausea. Also, drinking 16 ozs of water also helps eliminate the spasticity causing agents after the treatment.

This time he hit my steel traps (trapezius muscles) in my shoulders to allow the shoulder to move more freely. Mine are always tight because that's where my stress centers. He also focused on my wrist and hand.

Again I watched amazed as he moved my wrist to more than neutral, which hasn't happened since the spasticity set in (over two years ago) and my finger straighten with my arm outstretched. My other OT could only manage the fingers outstretched with the elbow bent. I'm loving the results! I'm finally feeling optimistic and excited about therapy again.

This was all great and good, but would it last? Only time would tell. This second treatment was on a Friday and my next treatment was on Tuesday. By Monday, I could only get 90 degrees of supination in my wrist instead of being able to lay it flat against my desk palm up. By Tuesday morning, only 45 degrees of rotation. Okay, it was only the first heavy duty focus on the wrist and hand. It could take several treatments or at least that's what I read.

I greeted my therapist with a, "do it again!"

I now leave his rehab place with a smile on my face. I'm getting the response that I'd hoped for. Am I at the point of shouting it from the rooftops yet? Not quite yet. Now when I get long lasting results, you better believe it. We are both optimistic while keeping our feet firmly on the ground. As for now, I've found a spasticity and pain relief method that works in between Botox. But another stroke survivor and friend has decided to forgo his Botox at least for one series. I'll keep you posted on the results.

Nothing is impossible with determination.

Thursday's Tumbles and Stumbles:Oops!

Some of you may have noticed I missed my Redefining Disability Project blog on Tuesday. Well, OOPS! Life happens.

I had a rough, exhausting weekend. It started with a double dose of Lactulose (laxative) for my hubby and a HUGE mess to clean up. I do mean HUGE! The sh!t hit the fan and went everywhere. It took me two days to recover from the exertion alone. Well, that's not entirely true. There was a grocery store run and taking the laundry to the drop off laundry service and bringing it back into the house (30 lbs with the extra blankets) added to it, but it was an extremely full weekend.

I had a passing thought of answering the disability question, but it flew out the window with my husband yelling "help" every half hour. Trying to put words together in complete sentences would have been charging up a steep hill with your car out of gas. It just wasn't happening. Even this blog almost didn't happen, but I sit here typing 10 WPM with 20mg of Baclofen, 16 mg of Zanaflex, 120 mg of Cymbalta, and 5 mg of Valium in my system.

For a late Wednesday night, I don't even know that this is coherent or not so pardon me, I'm going to bed. No wait, one more dose of morphine for my beloved, empty his urinals, get him a Coke and a bottle of water, and put in his eye drops for his Pink Eye he's developed, AND THEN go to sleep. I at least got the misspellings corrected.

Sunday Stroke Survival: Referred Pain

We've all been referred, right? Your PCP (primary care physician) refers you to a specialist for whatever ails ya. If you need a plumber, you ask a friend or neighbor who would they refer.

But what if it's your body pain telling you, "I hurt here." Is that where you are really hurt? Nope, not at all. There's this contradiction where the body is concerned called referred pain. So you can't believe everything you feel. Sometimes

you have to be a detective and search for what is really happening in your body. It's not always cause and result. You can hurt in some of the craziest places that have nothing to do with what is actually causing the problem.

For example when I had my heart attack, I never once felt like there was an elephant sitting on my chest. Late one summer afternoon, I had just gotten off work as the executive chef at the local Marriott. They were opening a brand new hotel and it was opening the next day. So as you can imagine, I was extremely busy with last minute details. I started sweating profusely and was exhausted. It was only 100 degrees F. outside and I had gone in at 5AM, 10 hours ago. I was huffing, puffing, and almost gasping for any cool breeze as I got home. My head was pounding so I knew my blood pressure was up. For me, heat and stress will do that.

I plopped down in a chair to just take a load off. I put my hand up to my jaw and rubbed it. Oh great, just what I need my TMJ acting up and we open tomorrow. The pain worsened over the next couple of minutes until it felt like I'd been socked in the jaw by George Foreman. I noticed my breathing hadn't eased up any since being seated in air conditioning.

Alarm bells went off in my brain. I couldn't put my finger on it, but I knew something bad was happening to my body. A memory buried in my brain what this was a symptom of, but all I could remember was it was an emergency. I called to my husband and asked if he wanted to go with me to pick up our youngest daughter from school. He agreed. The hospital was only two blocks from the school. Although I didn't feel ill, I knew for safety sake I should have someone that could drive with me. My husband couldn't legally drive on the controlled pain medication he was on, but I figured that a couple of blocks wouldn't matter.

I walked into the ER and gave them my name. When they asked what was wrong the answer that eluded me became crystal clear...heart attack. Pain in the neck and jaw are referred pain indicators for a heart attack. I collapsed after uttering the words.

So why is this important to know about referred pain? Just because you have pain in one place, say your hip, it doesn't mean you have an orthopedic problem. You could have a lower back spasm, kidney infection, bladder infection, pelvic inflammatory disease, or it could be your hip.


When I had my first stroke, I misdiagnosed myself. Dizziness, couldn't put words together correctly, confusion, disorientation, sluggish motor skills all spelled low blood sugar caused by not eating or too much insulin. The first thing I did was take my blood sugar. Yep I was right. My blood sugar was 40 (80-112 is normal). I knew I shouldn't try to cook in that state so I called Pizza Hut to have a pie delivered. Meanwhile, I'd taken my vital signs...just to be safe. My blood pressure was high 180/96, but it had run much higher before. My pulse rate was a little fast at 95, but again, no real cause for alarm. My breathing was steady. I didn't hurt anywhere. It had to be my diabetes so I ate some sugar wafers and drank some juice.

Forty-five minutes later, the pizza arrives and I'm chowing down. I waited for the carbohydrates to metabolize into sugar, about an hour and took my blood sugar again. It was 92. But why was I still having trouble thinking clearly and moving? I tried to talk to my husband but he couldn't understand me, but then, he's deaf too. I picked up my cell phone and called my daughter who lived two streets over.

I didn't think to look in the mirror for facial droop, or know that my speech was so slurred that even my daughter couldn't understand anything I said but help. The rest of the story you know. If I had known that strokes could cause a bottoming out of blood sugars would I have done things differently, probably not. Even the nurses that took care of me in the stroke unit didn't know that either. We simply were taught to look for elevated blood sugars as a possible symptom of a stroke. The neurologist at the rehab facility told us.

Why am I quoting symptoms on a blog about referred pain? If you haven't guessed by now, referred pain is also a symptom.
It's like that old MD joke...
 
"It hurts when I do this" and the doc answers back, "Well, don't do that."

Doctors are diagnosticians. They take all the information you can give them and make a judgement call (best guess). So if you have a pain in your shoulder, they are going to check to see if there's anything wrong with your shoulder. But, they may also run an EKG to make sure it's not a heart problem. They may run extensive blood tests to check for infections and/or unbalanced chemicals in your liver. They may even order an ultrasound of your gall bladder. Yep, referred pain could mean all sorts of things or nothing at all.

Wikipedia.com

For someone like me who listens to their body and tries to find out what it means, this can be nerve wrecking. I am not a hypochondriac. But I believe your body is trying to tell you what it needs. When you crave certain foods or feel pain in a certain spot, it's talking to you. When I start cramping in my abdomen or legs, I know my potassium is low because of my Lasix so I'll eat a potassium rich food like a baked potato. If it stops the cramping then I'll know I'm right. If it doesn't, then it's something else. Now if my body is craving ten pounds of chocolate...well that's a different story.

It doesn't hurt to check with your doctor when you have pain. Granted I have Fibromyalgia, so any amount of pain really smarts. But I'determine what is causing my pain and where it comes from. Plus, I'm medically trained. I research all pain, I have to find the cause.It's almost an obsession. Sometimes it's nothing, but on many occasions it's something. Never assume the pain you're feeling is directly from that area. It could be referred pain.

Nothing is impossible with determination.

Thursday's Tumbles and Stumbles: I Wish I Was A WEEBLE!

As we age in the Murphey Saga household, the more we go into age regression. When my kids were young they had these toys called Weebles.

Weebles wooble, but they don't fall down.

Wikipedia describes the reason they don't fall down is a weighted bottom. I have a very weighty bottom and I still fall down. I haven't this week, fallen down that is. I've been stumbling and tripping over imaginary tufts of carpet. Before y'all start worrying, it's because I got new shoes and the soles are thicker. I just have to adjust raising my foot a 1/4 inch higher with each step.

But talking about regression, how about toileting...

 

Or eating...

 

How much difference is there between this 

 

and this?

I mean besides the flavoring.

Young at heart and dependent in body. The more we age --the more we regress. My father had the right idea when he started counting backwards at 50. Now, he's in a stroller and a crib again (wheelchair and bed rails) as he calls them.Life goes full circle. Enjoy it while you can.