Tuesday, October 17, 2017

Touching Email and Thank You Readers

I received an email from a lady in Tennessee a couple of weeks ago that touched my heart greatly. No, it wasn't from this blog, but my other blog at the Cockeyed Homestead and it touched my heart at a time when I really needed it.

I have readers that have been with me for years. Only a few actually comment, but many other email me through the contact option. Sometimes, I forget what an impact my blog has on others. I'm just chatting away on things in my life. It's a saga...a never ending story that is my life. I hope to inspire, motivate, and bless others with my blogs.

I don't always know for sure even with the high hit counts in the analysis charts. Many may just scan a bit and find out it's not what they were looking for like I do when researching a subject. The internet is great for that. But to know someone is actually reading and digesting what I've written is great. To know that I've actually succeeded in my goal is awesome. It is a reaffirmation to me that I really am answering a calling by blogging.

Thank you readers.

Sunday, October 15, 2017

Sunday Stroke Survival: More Woes

It seems like of late, I've been writing about the woes of living post stroke than my usual upbeat blogs. This week is not different.

The decubitus ulcer (pressure sore) on my foot ruptured. It was my own fault. Instead of being a good girl and staying off it, I played last weekend.

It was the Big Red Apple Festival here. I'd never been before and planned on going for over a month. It was the 30th anniversary too. For this blink-your-eyes-and-it's-gone town, it was a huge deal. I had missed last year's and didn't want to miss it again.

I figured it was going to be like most of the other festivals I've been to since moving here, thirty minutes tops to see everything. I was wrong. Three city streets were closed for several blocks. Of course, I just had to see all the food vendors. Almost every restaurant and church for a three county area was represented. BBQ, gyros, hamburgers, hot dogs, homemade sausages, a variety of ices and ice creams, and baked goods galore. I couldn't decide what to eat. My mouth was drooling over all the goodies. In the end, I opted for a hot caramel apple offered by the local real estate office. I also got the mandatory 30th anniversary Big Red Apple Festival t-shirt. It was offered at a price I couldn't resist...free. I mean really! Go to an apple festival and not eat an apple?! Unheard of.

I bypassed the kid zone with their bounce houses and apple bobbing tanks, and headed for the arts and crafts section two streets over. Handmade jewelry, wood carvings, soaps, aromatherapy oils, paintings, handmade sewing projects, quilts, needle work, honey, jams and jellies, and the alpaca farm wool and alpacas booths all found me perusing their wares. Not that I had need for any of it. It was just so much fun looking at all of it.

My foot got more and more raw from walking the sloping pavement. I hobbled to Lisa's booth at the front of the row. Lisa is the coordinator for the Clarkesville Farmers Market. I'd been talking to her quite a bit this summer about opening a booth in that market next year for the homestead. I'd spent all season doing market research. I could barely take a step without pain. I knew I'd overdone it.

I was looking at her homemade, organic bug repellent when I felt the ooze start inside my sock and AFO. The callus over the blister gave way. I glanced over to my van parked across the street judging if I could make it that far. I had no choice. I walked each painfully gauged step to my van. A police officer dutifully held up traffic for me to cross the street. I apologized for taking so long as I passed him. He said they could wait for me to take my time.

I wasn't even going to try and survey the damaged foot in the car. I knew I'd never be able to put my AFO on again to walk into the house if I did. I drove home thanking God for my cruise control and only having  two red light and a stop sign before home. I left everything in the car and climbed the four steps into the house.Why didn't I take the new ramp?  The ramp is harder on my foot going up.The stairs were quicker. You see I also had to pee. I hollered at Mel yo bring the stuff in from my car as I sat down in the sofa. I pulled my shoe and AFO off. Gingerly, I pulled off my sock. The 4x4 I had folded for padding had soaked through. I peeled off the tape and as I pulled the 4x4 off the callus came with it. The gaping sore greeted me. "Hello again!"

So I'm off my feet for a days. Well sort of. I still force myself to get up, get dressed, and do the necessary bathroom visits, but otherwise I'm off my feet. I've bandaged my foot with Ameris gel and folded 4x4s. My AFO is off unless I have to walk. Six more days and counting until I can order my new shoes. I can hardly wait. Actually by the time you read this, it'll be tomorrow. Then it will be waiting until I can et them. The sore should be almost healed by then.

Even with all this pain, the festival was worth it. Sometimes, you just have to be bad and have fun.

Nothing is impossible.

Sunday, October 8, 2017

Sunday Stroke Survival: I've Gone and Done It Now...

I've gone and done it now. I finally got tired of the hurry-up-and-wait for others to act. I've only been talking about my waiting for what...three or four months now?

I figured waiting on Shepherds Center was just another wait time twiddling my thumb awaiting the unknown. Try doing this with one functioning thumb. I was born under the zodiacal sign of the bull. Very apt for me because I'm stubborn as a bull, and hate being patient awaiting on others. I took the bull by the horns.

I made an appointment with a neurosurgeon in the next big town (30 minutes away). Today (Tuesday) was that appointment. I apologized before I began my tale because I might get ugly in the telling. I figured forewarned is better than them thinking I was just another whinny stroke survivor boo-hooing about their life of limitations. You all know I'm NOT one of those people.

I figure I've been more than patient and cooperative for the last few years with trying everything for combating my post stroke spasticity. I've done research upon research for alternatives. I've played guinea pig for treatments, drugs, and anything anybody else could think of including electricity running through my limbs. Endured pain levels where all I could do was curl up and cry because there was no relief. It was all done in the hopes of controlling this demon which has stolen my recovery. Quite literally. I've lost what I've regained of arm and hand function because of the spasticity.

The results of the appointment...they can't help me. In this case, there was a BUT. The kind of BUTs I like. They can't help me but they will make an appointment with someone that can a functional neurosurgeon at Emory University in Atlanta. It means diving an hour, but at this point I'm grasping at straws..any straw available. Somebody on this Earth has to have the answer. These guys literally helped write the textbook on the subject.

Although in looking at the abbreviation (above) for the American Society for Stereostatic and Functional Neurology, it's ASS F(i)N(al) struck me as I first saw it. I don't know if this means they are all asses and what they say is final, or that this is the final straw for my ass. Either way, it's a shot of hope.

Now about my shoes. I've been waiting and burning up Ma Bell for months now also and still no shoes. I thought I had resolved this problem a month ago. Nope! The orthotic company still has not received the necessary paperwork as of this morning. Since I was in town for my neurosurgeon appointment anyhow, I decided to hail hell fire down on both offices until I had an appointment to get my shoes ordered. I was tired of waiting. I'm already starting on yet another decubitus ulcer forming on my AFO clad foot because of my shoes no longer supports my foot correctly. I was not my usual nice person in either office. I went to the orthotics place and picked up another set of the paperwork and hand carried it to my PCP's office. All of four blocks away. I signed in at my PCP's office. No, I didn't have an appointment, I explained to the front desk clerk, but I wasn't leaving until I got this matter resolved today. I explained why I was there too to the poor girl. She in turned called one of the nurses up to the front desk. If all else fails...pass the buck. I explained my situation again. The nurse took a no nonsense attitude and marched to the back of the office where the doctor was seeing patients.

Fifteen minutes later, the nurse returned with the filled out and signed paperwork in hand. I rose to take them from her. She shook her head and walked to the fax machine. Within five minutes, she motioned for me to join her at the desk. She told me to go to the orthotics office and make my appointment for my shoes. She was a nurse after my own heart and she did exactly what I had done in the past. Again, she apologized for the delay in getting it done, but her actions spoke volumes. I went to my brace maker and got my appointment...October 18th, my beloved husband's birthday. Two weeks after that, I'll have my shoes.

It's been a eventful/uneventful couple of months. Hopefully, not soon to be repeated.

Nothing is impossible.

Sunday, October 1, 2017

Suunday Stroke Survival: News and Insurance Woes

I finally heard from my neurologist about getting an appointment at the Shepherd Center!!!
(Whistling and one-handed clapping)

That's the good news.
(CLUNK! The other shoe dropping)

The bad news is that they are not taking any new patients. My neurologist's office will have to call back in October or November to see if there is an opening. So I;m still waiting. But I do have a toe in the door. Sort of. With Shepherd's being one of the top spinal/brain centers on the east coast, a waiting list is to be expected. The last time I was there a couple dozen years ago, I had an 'in' (leverage). I was a spinal trauma, life flight nurse with a severe injury and they had an experimental surgery. I had doctors pulling for me. That's not the case now. Now, I'm an old (five years post stroke) stroke survivor looking for options. I understand the difference, even though I'm the same patient.

The odds of getting into the Center and having something done before the end of the calendar year is looking pretty slim. Why the push? Well deductibles for one. I've gone round and round with my medical insurance program since my Medicare kicked in back in July. Yes, my insurance is cheaper by $30 a month. My Blue Cross/Blue Shield is now my secondary insurance. They've got divisions called Pre-65 and regular medicare. It shouldn't matter, right? Medicare is Medicare and my BCBS is secondary. But because I'm not 65, by a couple of years, they only reduce my premiums by $30 instead of 66% (100 a month versus 300 a month) like at 65. It's a racket, right? Who besides me, thinks this?

I'd shop for a different policy, if it wasn't mixed up with my retirement pension. It's also terrific insurance that has a maximum out of pocket and a low yearly deductible. Yeah, I'm just griping here because there is nothing I can do about it. With my Medicare, the chances of my hitting my yearly BCBS maximum out of pocket expense ever again is nil. Which is a good thing, but a bad thing when you compare the benefits of the BCBS policy. I can foresee me spending close to the maximum each year without actually crossing the threshold each year.

I guess I've got a choice to make. Either to wait in Shepherd Center or find another neurosurgeon. The bad thing about my move to north Georgia is that I know no one that includes doctors. My years of experience and tracks records means nothing. I'm starting from scratch. Wish me luck.

Nothing is impossible.

Sunday, September 24, 2017

Sunday Stroke Survival: Incontinence Woes

Now I know I'm not the only person living post stroke with incontinence issues. I've heard from a multitude of you. I've done pretty well getting out of diapers and just using a pad.

Being on Lasix, diuretic, for a bum heart just compounds the problem. I usually plan ahead. I'll take my Lasix two hours before I have to go anywhere. After two hours, the main effects of my Lasix wears down from a roar to a meow. But even still, I'll go before leaving home, go again upon entering a store/doctor's office, go again before heading home from shopping/ doctor's appointment, and run into the house to go again when I get home. It's somewhat routine now. Whatever I bought will have to wait until I take care of the issue. I'll leak in between and sometimes I just don't make it.

It's really embarrassing, as an adult, not to be able to control your bladder! When out in public, other people give you a wide berth especially after an accident. They look at you with that "what's wrong with you" look. Hello! does the cane, limpy walk, or one arm frozen in a 45 degree angle give you a clue? Of course, it was an accident. Who in their right mind would want to pee or worse themselves. Even at home and it's just me. I'm mortified. I dutifully clean myself up and put on fresh clothes waiting for the next accident.

No, I'm not on the self pity pot. I'm stating fact. Doesn't everyone love seeing an adult walking around in urine soaked britches? Do you look at them pitifully? Or do you go about your business? I think most of us would prefer you so the latter. You know the saying, "Sh*t happens" it's true with urine also.

Now in combination with my Dantrolene, Sh*t really happens. I was at the Farmer's Market a couple of weeks ago. I was speaking to the lady in charge of the market about setting up a stall next year. No cramps. No ominous rumble in my belly. The back door flood gates opened. There was no stopping it. It flooded my pad with poo. It ran down my legs and covered my socks and AFO. I halfway expected it to run off my shoes onto the concrete, but it didn't. I excused myself. Totally self conscious, and walked to my car. Every step was punctuating by a renewed onslaught.

I drove the fifteen minutes home wet with the goo being ground into my pores. It seemed like so much longer. At home we had the handyman and his assistant working on the plumbing. Oh great! The water is off! No shower. No flushing toilet. I'd have to use the spare gallon of water to clean off with.

I started feeling off earlier last week. I was more tired than usual. We were only preparing for a hurricane to hit us. You know the vague feeling that something is going wrong with your body but you don't quite know what's wrong. It started with a hot flush one moment and freezing the next. It was followed by that achy feeling. Not enough to stop you doing what you have to do, but just a general sort of thing. I chocked most of this up to missing my medicines one night and according to MedMD they were also side effects for the Dantrolene. I tried to ignore it. It wasn't until there was blood tinged toilet paper after wiping and the feeling like I'd been kicked by a mule in the side a few days later that I knew my problem. I didn't need a doctor or lab results to tell me I had a kidney infection.

Having to wear pads for my incontinence moments, provides a warm, moist environment for bacterial growth no matter how clean you keep yourself. The same with diapers. You have periodic diaper rashes and infections. It's so common place with me that my PCP writes a prescription with four refills every six months. I rarely notice a bladder infection because of my loss of sensation in my pubic area, but there's no ignoring a full blown kidney infection.  So this week I'm battling a kidney infection. I'm happy to report its on the mends. A few days of sulfur always stops it.. Thank God!

It's always the side stuff that goes with any diagnosed problem, like a stroke, that runs you ragged.

Nothing is impossible.