Broken/ The Daily Post/ One Word Prompt

The word for today is Broken

That’s the way my foot feels; broken.

I have Dystonia. You wonder what that is? It is involuntary movement of muscles. Mine is at the moment in my foot. I have seen it do it before; but then it left. This time it has remained for the sixth day.

a state of abnormal muscle tone resulting in muscular spasm and abnormal posture, typically due to neurological disease or a side effect of drug therapy.


Most cases of dystonia do not have a specific cause. Dystonia seems to be related to a problem in the basal ganglia. That’s the area of the brain that is responsible for initiating muscle contractions. The problem involves the way the nerve cells communicate.Sep 11, 2016

My shoes that I feel most comfortable in are not working right now. When I get out of bed, the pain is quite intense. When I lay down at night, my toes curl under, just like in the photo above.

I have called my Neurologist and am waiting on a prescription for muscle relaxer. I hope it works.

I have a wonderful doctor that immediately diagnosed my brother with his rare disease; Multiple System Atrophy. Since I was his sister, I was able to get an appointment with him for my diagnosis of Parkinsonism/Dystonia/Ataxia.

He is a neurologist of science. He is very smart. I recommend him for any neurological disease that you are having a difficult time getting diagnosed.





The word for today is Patience

Do you have different levels of patience for different people? Maybe you have more patience with a close friend, or family. What about your level of patience while being put on hold over the phone?

Mine is certainly stretched when waiting for a representative to come on the phone to talk to me, especially if it has to do with the government. I have all the patience in the world if I am going to my doctor for test results. Go ahead, slow that line down. Let those other patients go before me.

I have middle of the road patience for little kids. They are so innocent but I am getting older. Running, yelling, screaming sets me on edge. I don’t have patience for television characters who don’t see the box directly. They are playing the dumb part; I get it, but I would rather snap the TV screen and make them disappear.

I don’t have patience when it comes to finding cures for cancers and other illnesses. I want the cure today, right now.  For God’s sake, I see a new prescription strength medicine on the boob tube at least every two weeks. If we can have new medications every few weeks, can we not then find a cure to those that take lives? Sorry, but I am not going to be the guinea pig for your new product. I could end up with a swollen throat, chest pains, itching, headaches or worse yet, death. What’s wrong with the good old medicines that really work? You know, Vicks on the chest, tea and honey, a shot of whiskey, a towel over the head and leaning over a steamy sink of  hot water?  I realize we want fixed, but sometimes it just can’t be done, because we are waiting for more donations for cures. We need answers, not instant fixes that cause so many side-effects. How do you think we got that Super bug in the hospitals and other medical places? Because we want to put something in our mouth right a way for a quick fix, when most times these generalized illnesses just have to run their course. Let’s stick some of that doctor’s office money into a donation and find more cures. Let’s cure the cancers and rare illnesses. Let’s leave the smaller stuff to fighting itself inside us and our old-fashioned smarts.



It Is Alright

death 2

Walk into the light

A subject matter, most don’t like to think or talk about. I know I was one of those people. Life is for living, not pondering on death. My daughter has told me a few times, that she is tired of hearing me speak of this matter.

I truly understand her point. Who wants their work, or play time interrupted by such morbid thoughts? Who wants to actually think for a second about losing a loved one?

The problem is getting through and over death. When my father became ill, and I started taking care of him; death was not in my vocabulary. I knew, without a doubt, that modern medicine, a loving daughter taking care of him, and God, would never allow death to enter our lives.

When my mother passed away, it was a true shock. She died suddenly after being a vibrant, healthy woman her entire life. I have lost all of my grandparents and many aunts and uncles, and a few friends; but it seems this was put into an entirely different category.

When a spouse or parent and my own dad died, I wonder even today, after nine years, is he really gone? Can’t I go out and see him or call him? When within a week of laying dad to rest, my brother had his first heart attack, it began to become a reality, that death was real.

I didn’t go into my brother’s illness with the same outlook or hope that I had with my dad. Number one reason was I had been awakened to the fact death could happen. Number two reason; MSA is incurable. What a nasty word that pops up in our dictionary.

My goal for my brother was to get involved. By this I mean, be involved with all physicians who could help or understand. Be active in all Facebook groups that held information and hope about Multiple System Atrophy. To speak to anyone and help them to understand what MSA is.

I did this and I still am active in these groups. There will be a cure, I have no doubt, but in the mean time, some will lose their battle, and join so many other warrior angels in heaven.

There are so many diseases with hopes for a cure. I will never understand why God doesn’t fix it; but I believe he has his reasons. My theory is, the good person living here on earth is needed by God more desperately, than we do.

Because I have suffered physically and emotionally from the tragedies of caring and watching my family pass away, I want to speak to you on a personal level.

It is alright to fear; but place that fear in God’s hands. It is alright to cry; it releases stress from the body. It is alright to reach out and pray; even if you have never prayed before. It is alright, to begin visiting loved ones more often and sharing the good things about  life. It is alright to carry hope, even though you had no reason to hope before. It is alright; to accept a friendly, helping hand. It is alright to grieve; by spending time alone, calling a friend, weeping many times. It is alright; to forgive yourself, family, friends, and by standers. It is alright; to yell, scream in desperation.

Death is not a fun thing to go through; but it is a necessary task we must face. It is a part of life. I wish I would have seen the words in bold prior to losing family and friends. I may be much further along today in my healing.




Fears, Phobias, What?

I went out today. It felt wonderful to be out with my car radio and the sun shining. It blew the stink off of me, LOL. I went to the pharmacy and picked up my monthly medications. Let me tell you how much I hate taking medications; pretty darn awful bad! Does that say it in a nutshell?

I started learning about stress many years ago. One day I was walking down the sidewalk and I passed out. Thankfully, a store owner or God through him, knew what my problem was by looking at me. He ran inside and grabbed some orange juice and had me drink it.

Yes, my sugars had bottomed out. Those were the days when I first started relying daily on Diabetes meds. I was switched to this one or that one in order to find what was good for me. In that process, I learned the word phobia.

I have the biggest phobia about medications today. I hate taking new medications worst of all. I remember when I lived in Florida, my doctor thought my blood pressure could use a different dosage. He upped it and the next morning I took one of the new ones.

I don’t remember how long, but I think it was before noon, that suddenly all I could see around me was shades of gray. It scared me and I called the doctor’s office. I told the receptionist what was wrong and before I knew it, the doctor, himself, was on the phone and stayed with me, instructing me on what to do to raise my blood pressure.

The medicine had lowered it too much. Now, with those two memories I have the biggest phobia ever taking pills. I will never be that one person who tries drugs, because I am too darn scared.

If I  have to take a new medication, I will cut it in  half, and then go into panic attack mode for the first two hours. If I am still alive after two hours, then I start to relax. Sounds so silly doesn’t it? At those moments, fear is bigger than life itself.

I don’t know how to get past it. I am worse today than 20 years ago. I used to tell the nurses where I worked that when my time comes to enter a nursing home, I will be the one to turn down the pudding or applesauce, because I know they hide pills in them. LOL

So now it is going on 6pm. I just took my evening pills and will now eat supper. Watching TV or getting on Facebook for the remainder of the evening. Do you have any phobias? Any real fears that seem big? Wanna tell me about them?



Thoughts Written Down

The night before last, I was woken to tremors. This doesn’t happen very often. These ruined my night and I ended with about 4 hours sleep. I didn’t work yesterday and it was a good thing. I stayed in bed fighting tremors all day.

The reason I am writing this is in hope of transferring my mind to other things, so I am going to be pretty honest speaking here. When I am forced to lay around a lot, my mind tends to wander to off-beat topics.

I think a lot about how I took care of my dad the year he was dying. I ponder on the things I had to tolerate, mean words, doing things that were not things I enjoyed. I then let my thoughts drift to my brother and I can spend hours going back in time and walking day to day with him while he suffered through Multiple System Atrophy.

In all my years of medical training I had never crossed paths with such an ugly demon as MSA was. When the day came that the good Lord took him home, I had a part of me that was so happy for him, that he was finally not suffering.

The other parts of me fell apart emotionally. All the strength I had retained in order not to let Al give up the fight of hope had finally worn me down. I began to fall in to walls. I blamed it on exhaustion. Panic attacks that I hadn’t had for years, suddenly came back to haunt me over and over.

Through that following year, I felt as if I smiled more, relaxed a little more, cried a little less. Yes, I was healing. The feelings of falling didn’t subside. They continued to show up at times. I blamed them on my being tired. Then slowly the tremors started staying with me more often and eventually I was diagnosed with Parkinson’s Disease.

Doctors told me my body was just drained from caring for people, and that my emotions and physical body were just too tired; allowing Parkinson’s to enter. I suddenly became angry and bitter.

I was out to show myself and others I could still do life. I could work, drive, date if I had a chance, in other words I could rise above this disease. It wasn’t easy. Jobs were not to be had due to my Diabetes and now PD.

I finally landed a job but the tremors and weakness seemed to become more obvious. A cane was introduced then a walker. I became more tired and fumbled through my days until I finally knew inside my heart I had to give up the work thing.

Now I am in my apartment beginning the process of deciding what I can’t live without and can get rid of. Moving in to my daughter’s home brings a certain amount of worrisome with it.

Thoughts of being in the way, messing up another family’s routine enter my mind often. I began to wonder if there really was a God out there. After all how could a God see that I had taken such good care of my family and other patients and then give me these new problems of health.

Finally it hit me one day that God had me right where he wanted me. I had done as he asked. I had been given a talent of caring for others. Now that my brother was gone, my job was done. I am no longer able to take care of others, and instead am  having to rely on others for a bit of watching over.

This thinking turned my thoughts completely around. Now I feel like I am entering the last chapter of my life. I don’t know how long this chapter will last. Hopefully years, but only if I don’t end up in a wheelchair or bed bound, then that will be another sub-chapter to open.

My mind suddenly has shut down crazy thoughts about finding a new companion in my life. I find myself looking at my personal things and pondering on what child wants what. I can’t seem to see any light any where in the tunnel called life. This is it. In a nutshell, I am going to live life in some way until it is over with PD.

I don’t like thinking this way. I want to look at life with  bubbles floating amongst me with some including giggles, and love heart beats, others with quotes of looking towards tomorrow.

A special time of spending with family that may not have occurred otherwise. I am lucky. My kids are not tossing me in a nursing home, so yes, I am grateful; but I am scared too, there are parts of me that feel like I haven’t done all that I have wanted to do yet in life.

Somehow, some way, I have to fight through these depressing feelings and get back on top of life again, but right now I can’t seem to get there. Last evening I was feeling like crap but I had a supper date arranged with a friend of mine.

Oh how I wanted to cancel, but I told myself I will feel no worse there than here at home. I was still feeling awful as we were eating. My friend had her grandchild with her and I was in panic mode that something crazy would happen and I kept emotionally screaming at God to not let me act any other way than normal.

It didn’t work so I ended up taking some special medications that I carry with me for these tremor times. The medicine didn’t make everything go away but it did  help slow down the tremors and I was able to function better.

Although my legs didn’t want to hold me up; but with the help of leaning against trees, poles and sitting on benches, I did go with her and her grandchild to the park and her granddaughter became my model. Except for the weak legs I was able to forget about all the wicked thoughts I have been carrying with me as of late.

I will post the photos later today and for now, I am thankful I made it through last night without falling down. I want to thank-you for reading this and as I said earlier, maybe re-reading this back will help me also. Hugs to everyone, have a good day. Now I have to start sorting this stuff out here at home or it won’t get done.

leaves 5

Diabetes and the Lady Who Saved Me

Today I wanted to sleep in so bad, but my eyes were awake at 7. It makes me so mad because I am so tired. Yesterday I did so much that my legs were tight by early evening. To touch them hurt. After a night’s sleep they are back to normal.

I will feel better when I get a window air-conditioner. With being a diabetic, the heat makes my sugars bottom out. I got up and drank my cup of coffee and played a couple of games on FB. I fixed me a slice of toast, 2 eggs and some vanilla yogurt with sprinkles of cinnamon.

I decided to take my shower since the inside of my apartment was beginning to heat up. After dressing, I gathered my basket of dirty laundry and headed to the laundromat. I started my wash and then about 15 minutes into the wash cycle I started to feel funny.

I looked at the clock and it had only been 3 hours since I had breakfast so I shouldn’t be having any issues with low-sugars. As minutes ticked by I began to feel worse and  my legs and hands began to tremor.

I had taken my diabetic tester with me so I checked it. It was 78. Oh no, I was in trouble. It was my sugars. I had laundry in the washer. I couldn’t leave. I had a candy bar in my purse for such emergencies and hurriedly ate it. 10 minutes later I checked my sugar levels again. The numbers had not begun to rise.

Now I was frightened. There were people in the laundromat; but no one that knew me. I staggered and walked up to the counter. I said, ” I am in trouble. I am a diabetic. I have laundry in the wash and can’t leave to go get something to eat”.

She said, ” my mother was a diabetic. I just lost her a few months ago to this”. She ran to the pop machine and got me a regular Pepsi and handed it to me. I took a big drink, feeling I was going to gag, it was so sweet, but I kept drinking. Her son quickly drove to a drive-thru and brought me back a cheeseburger.

I ate that and within 20 minutes my sugar was back up. I was so scared. I don’t know if it is the constant on the go of putting things away here in the apartment, or the heat, or if my sugars need an adjustment, but something is going on. I thanked that lady and her son over and over for saving my life.

It took a couple of hours for the tired feeling to leave me completely. When I am weak, my Parkinson’s tremors start acting up and that took awhile to get under control. I was glad to be back home, where it was safe. I do know I need that air conditioner.

I am still hanging things on the walls and am down to the spare bedroom. One of these days soon I will be finished unpacking. Maybe I should get one of those Diabetic bracelets so people will have a better idea of what is going on in case I pass out. I do know that I was being watched over by God. He had that lady standing close by who knew what diabetes is.


Medical or All-Purpose Marijuana

I was reading some stories about how marijuana should be legalized everywhere. My thought is should it be legalized for any purpose or be used strictly with a prescription for medical purposes?

I went through some pretty heavy months with my brother as he went through his journey of Multiple System Atrophy. When you are on Hospice, a lot of medications that were used prior are taken off your list and more types of pain medications are now the choice of drug.

I can’t speak for anyone else. I can only talk about my own experience with my brother. MSA is not a curable disease. Therefore, when it comes down to weeks and days, there is nothing truly left to do but attack and zone in on controlling the pain.

Every medication that was given to Al, produced a side-effect that wasn’t pretty to see. Some medications cause seizures. Other pain medications take a once smiling face and turn it into a zombie state.

When one becomes available and I discover it works, I learn that it is short-term. The only choice I had was to switch medications and put Al in a trial and error position again or increase the dosage of what he was using.

I did try the trial and error but didn’t like Al having to pay the price of side-effects. I finally stuck with the one that worked or ones that worked and increases were made usually on a weekly basis.

The last few weeks of Al’s life were nothing to brag about. I didn’t know Al any longer. I was never sure if he knew me or even knew where he was. When you choose the strongest medications on the market, it is hard to believe that the patient can suffer even more, while in your heart, you just want to help ease the pain and make the last days comfortable.

I felt terrible and wished for a better way. The ideal medication was to help Al be eased from the terrible pain and yet have him here mentally with me. If only we could see the future of what decisions we make today, life would be much more simple and decisions may be changed.

For me, now that Al has departed this earth, I look back and believe if marijuana was legal in our home state, I definitely would have looked into it. If there are side-effects, they are small indeed compared to chemical drugs.

Al and I would have spent more quality time watching TV together or talking about his last wishes. I wouldn’t have sat or stood by his bed for so many hours wondering what he was thinking or maybe wondering where he was. His body was there, still and empty. His mind was definitely not with me.