Once Upon my Daily Life

My body has developed tremors. Embarrassing shaking hands, legs, body. Not from drugs or medication induced, nor disease. A Central Nervous System glitch.

The shivering is not from the temperature, actually I am sweating, profusely. I realize the people around me think I might be lazy. Or worse being a drama queen! But, if they only knew the struggle it is to get up from a chair, to take a step, and know the misery that is coming, things will start to fade to gray within seconds, Blood pressure drops to 60/45(did this twice and scared me big time) and my body shakes. Nauseous and with chills. The pressure builds in my neck so it pounds and my head wants to explode. The pressure wants release out through my ears. Then the sweats come. All this in less than @ 3 minutes .Then it starts to pass as soon as I can sit. Sometimes I have to lie down.

Do you know what’s freaky, really weird? Once I stop exerting I feel normal! I never considered eating and standing up to be exercise but it is now! Yes and eating, well that sends this monster into overdrive. The mountains get much higher after eating.

So glad I am at home. I know I need a shower. Maybe later, maybe tomorrow. Just to do the menial little things I took for granted just a short while ago would mean the world to me.. The doctors tell me, ‘well it is likely progressive.’ This is more than that, this is a growing mutation with jaws! Progresses? If your not certain what this symptom is from how do we know what it will do? We don’t, we just surmise due to what we do know. I hate that word now, progressive?. If this thing, this nameless maybe this or that progressive thing continues on the path it’s been on I won’t be able to continue doing the little I do now.

Quality of life? Ha I lost mine. No one is sure what has crept in and stolen my life my energy my hope. Passing the buck seems to be a new art form among my doctors, they even went so far as to urge me to go to Mayo Clinic, they wrote them, and I was told they would call me with the appointment details. I got a letter over a couple of months later. Their reply knocked me back in the chair. “Sorry everything is being done that can be done”. Whaaaatt? Nothing much is being done! Talk, referrals that so far have not happened.

I have children and grandchildren. Plus 3 great grandchildren. They mostly have such sweet innocence in their eyes, in the empathy they try to show. My explanation feels useless and I’m hurting because I’m not the mom I used to be, not the Grand mom I wanted to be. I’m sorry. This is not the plan I had ever envisioned. It’s not even a hint of anything I want.

My family… being a burden to them is my constant guilt. I hate it. But I am so grateful for all they do. It’s impossible to comprehend what would happen to me without them. They are wonderful. Do you think God is teaching me humility. He is getting through, and He is a great teacher. Please, I ask may I be done with this now? But no, not yet. Or, maybe He wants me to learn how to suffer graciously? I am not doing so well in that department, but I know my pride is still trying to hang on. God hates pride. Pray for me please.

How I feel is all my daily conversations seem to entail, and I hate it. How do I escape this prison?. I feel alone. I am alone. Alone right now is not so bad, . Being out in public when this happens is humiliating. There’s that pride thing again. I am told I don’t look sick… some things you just can’t see. The invisible illness. There are so many.

woman wearing grey long sleeved top photography — Alone

I suppose that’s a good thing if you think about it. You look perfect on the outside, but on the inside, there is a disaster. I’m in a constant battle with my heart, every second, every hour, every minute of every day. The truth… there is no cure at this current time. Most diseases do not have cures. Certainly no cure for Sjogrens, or nOH or POTS. Or Microvascular disease, The medical profession specializes in treating not curing. There is medicine to help some people who can handle the 20 pages of side effects, but each person is different. So far my body doesn’t accept it well. Tomorrow is my hope, always tomorrow.

He is my Hope. A daily prayer to Him. I wonder why and how this fits in His plan. I do know though that this is in His plan.Maybe He might like me being a Zebra, or writing about it? A future… what now? How do I move forward being so stuck? Pushing through……. For my family, for a life for others! I used to be strong. I Must be strong. But I’m not, not anymore.

Remembering, you and I are not really alone on this journey. Today we have support and technology at our finger tips. It is hard to fathom how just a few short decades ago people did not have this to help them. How miserable and sorrowful they must have been.

Dysautonomia International offers support groups to help people impacted by autonomic system breakdowns. Where we can connect with others who “get it.” Visit http://www.dysautonomiainternational.org/support to find a support group. Sjogrens International, and Sjogrens Foundation is also a fantastic support site and full of wonderful `information. The Neurological Institute, The American Heart Association and a wonderful bunch of ladies, aka my Red Heart Sisters. There are really a great many Zebras in the world. Those of us shaped and looking like horses scattered in the herd of horses but are not. Definitely not horses. We require thinking out of the box medicine. We are zebras.

people silhouette during sunset — ***Support is out there***

Thanks for sticking with me on here, all the way through. God Bless You greatly.

Published by Oh for crying out loud & it's Echoes!

About me it asks? Yikes...... Well I am a passionate and spirited mature woman of faith. Faith in God, My Lord and Saviour must always come first. Also I am a mom, of four. I was a wife 3 times, 2 times widowed. That was rough ! Rougher in every way more than I ever thought it would be.! I had no understanding of what the loss of a spouse entails. I was caretaker to each of them until they passed from their medical catastrophies. So after the last one passed I decided enough, I was done, could not experience that kind of loss again. Besides I began to think it was safer for the males in my life if we never get married. God has a purpose for this single aloneness He has me in today. So I will wait as He slowly reveals His plan for me to come. That is just fine with me. I just know those plans are going to be interesting at the very least. I am also a braggadocious Grandmom, Stepmom, Aunt, Sister, Cousin, and Friend of many. A woman who has much to say about a great deal. An Opinionated INTJ personality. Don't know about INTJ's? Thats your problem, google it. There are'nt many of us which I heard is a good thing. Ha it's all about perception. We are frustrating to be around because we are right. About almost anything and unrelenting. Just ask us. So by popular demand, (a few friends and family suggested that I write down some my experiences, notions, opinions. Certainly not so I wouldn't drive them all crazy with my ever competing thought and comments) 'Oh For crying out loud' was born. Born once in 2015 and then, Born again. More Recently. Now it is 'Oh For Crying Out Loud & it's Echoes'. I know it's a long name but I have trouble with being short. A work in progress. As the Good Lord has seen to bless my life with many diverse and rare maladies along with a humongous family, really large in size and in its fulnessl of unique and rare nutty complex diagnosis'. It seems fitting to share the mountainous climb many of us shared through our trips and travails of medical errors and not. We need advocates in our health system, loads of them. From every genre and field. People are dieing in vast numbers . The cover ups are humongous, unbelievably tragic. And common. Blame the Insurance companies? They certainly are a great part of the problem, but then so are their lawyers! Necessary, in many many ways yes! But there are good eggs in every basket, which means usually the opposite is also true. Just like we need them, we need pain. Well we do! How otherwise would we know fires are hot or learn the dangers to stay away from? However the medical profession in all it's glory is the most eggregious! All their services and administrators should carry ever more of the burden of responsibility along with all their ever greedy lobbyists and our corrupt nonsensical governing bodies! They take the cake!! Pharmaceutical companies, medical equipment companies cavorting along in orgy style with The FDA, hahaha ,yes we need them but not the harm they also cause. Well enough about all the icky difficult news.....for now. Blessings and hugs to you and I pray your helped by these stories and thoughts . Which more are to follow soon. If even you gain just a little better understanding of the goings on behind the scenes in our medical care for you and your loved ones protection, I will rejoice and a good Truth will be shared.. Until later......SS . View more posts