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SassyBetsy

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:minding-business:This is year 3. I still walk with a 3 wheeler. My vision is still double enough  to annoy normal movement.

Most important is I am still in pain.

 

Having said that though I have made a miraculous recovery from a Lacunar stroke. Usually these improve I was told. All that did was put pressure rather than help. One doctor held up my disability insisting I would fully recover. 

But I have come far. I could not even sit up in bed and flopped over unaware I was crooked. I had double vision and the room rolled constantly. I could not write the way I used to. I missed my pretty handwriting but I practiced by journaling.

In time it improved and my lovely signature was familiar again.

 

The best thing was balance improved so I could use a 3 wheel walker and not need someone to hold a gait belt for me to walk. 

Today I can read with my 2 eyes together. I still practice. It is still better with 1 eye and I go to 1 eye. I still never do a novel. I used to read non stop all kinds. Texts, papers, fiction,bios. 

 

What deficits from stroke or from medications.????

Attention, Concentration, Memory, Irritability, Mind Missing, Groggy Foggy, Excessive Sleepiness, Narcolepsy......Talking Slow.

 

Then the Pain that makes me a FREeeeak. 

Do NOt touch my right leg.

No one understands me.

Weird rash.

 

All I needed was the right doctors. They said why do you change doctors so much?  I insisted they were wrong dumb insensitive. And then I went to a teaching hospital. Doctors that did research and kept up to date. My weird rash was not from meds it was an aggressive invasive fungal infection that was in my nails, scalp and on my face and shoulders. I could not wear sandals and tank tops. I used make up to cover and even bandaids on my chin. It was a horror. My family thought I did have picking problem even when I denied it. I stopped manicures. I cried. I was so ashamed. Dermatologists said stop picking and suggested anyi depressants. Imagine!!!

 

I finally went to teaching Dermatologists. I found truth. I see one regularly because it is care not a cure. Pscorisis is fungal too so which was going on? I took anti fungal pill for nearly a whole year to get normal nail, scalp,and skin. I continue to use shampoo, solution, creams to keep my skin clear and soft and most important my scalp is not itching constantly.  I was not crazy or picking. The itch was real and the skin ruptures were real. Now I use antifungal products to maitain clear soft healthy skin. There were others like me. And I was prone to it. Heredity plus other things. I was innocent blameless shameless.

 

The walking better comes from constant therapy and exercises. But I could do better. Pain holds me back. It is barely held in check. After 2 Radifrequency Ablation Spinals, no long lasting improvements but it helps for a couple of monts due to the spinal anesthetic that lasts a while. But I have a pain doctor who speaks my language. I said You know about touch burning my leg??? And other crazy sentences! I was typical? In your world of thalamus and surrounding brain area damage survivors where we talk about pain that is never eased by medication and ultra sensitivity to stimuli, even air hurts, and clothing....I prefer soft or legging pants or shorts. Nothing can rub. No jeans ever.

 

But now I have tried every opiate group and a cocktail regimine that no other doctors outside the secret circle of CPS physicians understand or condone.

My visits to urgent care or an ER result in my routine disrupted and the docs hardly believe I tolerate or survive the dosages or the meds. They refuse to give my cocktail. I am appalled at this same teaching hospital where my awesome doctors live, that an ER community is so ignorant about CPS.  But my attitude has changed. Instead of feeling like an alien drug seeking freak psyco, I shame them for their ignorance, name drop my world renowned neurologists to make their heads spin and degrade their degrees and puny jobs, and insist by screaming earlier than I used to before it is 10++.

 

Emotionally I have changed. I have accepted that my colleagues and friends have moved on in life and careers while I am frozen in ice now an ice queen of stroke. ok I improve that visual by seeing myself in a long white fake fur standing next to my walker with a silver back pack hanging on it.

And one of those blue eyed Alaskan Dogs no maybe a white wolf next to me. Anyway I appreciate my journey without pity. I envision myself even better than I was before perhaps better than them in the real material world. I am freedom in my restrictions. If you get that then you have gained from loss and isolation.

 

I am not a wild dog in rage but there is a river of anger that drives purposeful motivation. I can control my emotions because I expressed and deallt with and became master Queen of the deepest most powerful of them. Yet I allow myself vulnerability to cry weep over disappointing stagnations in recovery and lack of power in my life. Therefore I refuse to be bullied and engage in small power plays because those are the deadliest.

 

But I improved slow and I still want more. I want resources access to therapy so I insisted sought out. I seek still. But I am lonely.  For creatures like me. But I am hungry for information, challenge,accomplishment, goals.

 

I am more open minded. More spiritual. I regained my faith. But more settled. I speak my mind. I despise bossiness and applaud those that recognize we only ask permission for anything from everyone.

 

I am now more than a mother which defines me forever. I am myself. But I live more alone in a crowded dorm of those cast outside of real life. We are more real in here. None of us fear death in the same way as we did as young clinging to life's moments people we were But we live much more in a moment. It is not just pizza.If you understand then you have grown out of the physical world.

 

As I recover I may not regain all but maybe that leaves room for other things.

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 That was so eloquently written.  Over the time you have been at this site,having the privilege of watching you go through all of which you have, both good and bad, has been a teaching guide for me in recovery and understanding . I am so glad that you have finally found the cause of the pain and itching and NO I never thought you were crazy. As stroke survivors, we are blessed , or cursed, to understand what the brain can do.  I  have ALWAYS loved the fact that you spoke your mind. And this paragraph; " I am not a wild dog in rage but there is a river of anger that drives purposeful motivation. I can control my emotions because I expressed and dealt with and became master Queen of the deepest most powerful of them. Yet I allow myself vulnerability to cry weep over disappointing stagnations in recovery and lack of power in my life. Therefore I refuse to be bullied and engage in small power plays because those are the deadlies" is absolutely magnificent in explaining what stroke can do to a person  

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Happy anniversary congratulations on three years of survival.

Just as every person is a unique individual so are our strokes,  rehab,  recovery and therefore our journey.

There may be similarities however we each have our own personal demons to face down,

Whether mental emotional or physical we all have our challenges.

Tithe strength of Courage and perseverance at times are the only thread we can grasp to continue on our journey

there is no need for side-by-side comparisons Almost two years ago, I received the best advice.

Rather than dwelling on all the things we can't do and all the losses we have suffered as a result of the stroke we need to focus our energy on what we  love to do and we are still able to do.

my entire adult life was spent in helping others, this  ultimately that led to my volunteer work along with the fact that I love to talk and I and I still can,  some people may say I talk too much.

 Lastly I have always loved to write poetry now I write of Hope, recovery and life from the perspective of a stroke survivor.

My writing is also led to Opportunities of running a Poetry Club with two senior citizen center.

s Between my volunteer work and at the hospital and my volunteer work running these poetry clubs I'm busy and having fun.

 31/2 years ago at the time of my stroke.   I never thought the words “I'm having fun” whatever cross my lips again.

I realize now, we need to seek out the silver lining in every cloud that threatens to darken our days.

 I honestly can't say I'm happy I had my stroke but I can't say I'm happy I survived and pull myself out of the darkness into the light of day yes with help.

The stroke network was a huge g part of that help; along with family and friends

 so once again my friend happy anniversary and just keep fighting I hope, someday soon  you find even a morsel of happiness.

Be blessed and be a blessing.

Daily thought and prayers are with you,

Jay Allen

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Thanks to everyone. 

Yes Jay you have a successful recovery journey because you have found your niche. I am proud of you friend. truly inspirational. a nice publication of poetry from stroke survivors would be fantastic wouldnt it. I know nothing about poetry. impressed with all you do. 

 

Thank you Keli for your support I know we havesimilar problems

 

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