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Stroke - Six Months After


CarolR

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Six Months Since

 

For a while now I have been thinking of starting a blog about my stroke, but being a rather orderly and analytical sort, I thought I should start at the beginning. That hasn’t happened so I’ve decided to start where I am right now, six months and two days since the thing happened that changed our lives. The “we” here refers to my husband and myself; I know there has been an impact on our three grown children and their families but it is Ed and I who live with it for every hour of every day. There have been good moments, wonderful moments even, but there have been other times of deep despair when I just don’t want to go on and don’t want to live my life as I am. My husband has been unbelievably patient and understanding as I have angrily expressed these thoughts, dissolved in tears when I couldn’t accomplish something that once would have been easy, thrown an occasional item across the room and expanded my vocabulary of profanity beyond any bounds that I would have previously found remotely acceptable.

 

Looking back six months it is probably good that I didn’t know then everything I know now. My approach to problems, obstacles or hardships had been to first figure out what the problem was and then determine what I could do to fix it. Then just fix it and move on. For example, at 29 I found myself to be the sole support for two young children; I had limited job skills and a partially-completed college degree, so I took whatever job I could find and went back to school nights. My original English major turned into a degree in Business and Accounting but I had marketable job skills. When my old car broke down I walked 2 1/2 miles each way to work until I could afford to replace it. Along that walk I met Ed; we have now been married for 35 years and added a third child to the family. We both worked hard and after the kids were out of college we accelerated our retirement planning, traveling as we could and saving for more travels later. Before the stroke we had explored 45 states, 6 provinces and 5 continents. We were actually on a trip when I had the stroke while going through security at SeaTac airport in Seattle.

 

But I learned that a stroke is a different type of beast. While in the hospitals in Washington State, 3000 miles from home, I presumed that once again I could just work hard and fix it all. At first, my left side was paralyzed, I couldn’t sit up without tipping over, I couldn’t be trusted to swallow properly, I drooled and my speech was slurred. The stroke was considered “moderate” with an NIH score of 12. My GCS score was 15 out of 15 and it was encouraging that I had remained conscious and aware the entire time. While I was having the stroke I was even trying to direct things, telling my husband to have TSA call 911, telling him to get 2 aspirin from my bag and explaining where the insurance cards were filed in my wallet. In the ER I became annoyed when the doctor was talking to my husband and not me. Though I was in a major trauma center less than an hour after having the first symptoms, I was not eligible for tPA because it was a hemorrhagic stroke. On the second day I started to move my left leg a little and the day after I could grip weakly with the left hand. On the fourth day I could “walk” with a railing and three assistants and was cleared to eat normal food. I then left for inpatient rehab where the dramatic progress continued. I could feed myself as long as the left hand wasn’t required, and dress myself as long as the clothing was simple. I again worked hard and learned new ways to get things done. I was confident it would all be “fixed.” We flew home three weeks later and here I was able to get around with a walker, taking a wheelchair if we had to go much distance. After about two months of outpatient Physical Therapy I was cleared to walk “independently!” The left hand continues to be a problem though ongoing therapy is helping and there is still improvement happening.

 

Now six months later I am still not “fixed” the way I had presumed I would be. My left shoulder has multiple problems; I have CPS, though it is mild thus far. My left hand, left foot, and entire left side of my head feel “asleep,” and sometimes the foot or hand burn and itch terribly. When I am tired or stressed, my speech becomes slurry and I still have the migraines that I have had for years. The lack of coordination in my left hand is an ongoing source of frustration. I don’t know if my walking appears “normal” but it sure doesn’t feel it; the left leg feels like two concrete cylinders loosely connected at the knee. Some days I am wobbly and take my stick (aka a cane, but I like “stick” better) so I don’t get too tipsy or knock over displays in the stores. And I get tired so very, very easily! We had hoped to be going to Machu Picchu and the Galapagos this winter but those plans are now deferred indefinitely.

 

On better days I know I need to count my blessings, which are many, everything from having survived somewhat intact, getting immediate medical care, having good medical insurance, the best family, friends and neighbors anywhere, having just built a smaller, more “accessible” home in a beautiful setting, and most of all by a long shot – having a wonderful and supportive husband. Ed spent the first few weeks literally at my bedside, scared beyond what I can imagine, dealing with all the logistics, and graciously accepting the unconsidered role as at least a temporary caregiver. He also graciously accepted my insistence on returning to the kitchen before I was fully competent to do so, picking up behind me when things went awry.

 

But there are those other days as well. Instead of rejoicing in all the places we visited, I am regretting those we may never see. I fear that I may never again be able to confidently pick up a grandchild. Will I be able to quietly kayak around the lake at daybreak, something that provided me with strength and fortitude when they were needed? And there are those “why me” and “it isn’t fair” times – I kept myself in shape, ate well, contributed to my community, etc. – this wasn’t supposed to happen to me.

 

If I think of the advice my current self would give to the self from six months ago, aside from the “you can’t just fix it this time” part, the biggest piece would be to get ready for not just ups and downs, but the monster-sized highs and lows that are ahead. And though things WILL get better, they WILL be different. Though much does get better, lots will still feel crappy. And then of course there are all those things like patience, humility, grace and acceptance that are easier to preach than to live. Hug your loved ones and say “thank you” and “I love you.” Take naps – lots of naps. Find something or someone that makes you laugh. Get those thank you notes written to all those people who helped you out, even if you need to dictate them. Buy fresh flowers. Have at least one pair of super comfy shoes. And a pair of pretty ones. Buy that new sweater or scarf that brings out your eye color so beautifully. Use the good dishes. Splurge (with the doc’s permission) on a great bottle of wine, and use the good glasses. Laugh, swear, pat a puppy, smile at a stranger, toss a pillow across the room – whatever helps. You can be the old you with adjustments, or a new you entirely; it’s your choice. Just keep on keeping on. And you are loved.

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I love your story Carol.  I have to say as you said to me about how my blog helped you know what your husband was going through the same is true for me.  I now feel like I can understand my husband better.  I laughed about your husband picking up behind you in the kitchen.  I so do that with my husband.  You seem further along than my husband in that my husband isn't moving as freely.  Please don't rule out traveling, kayaking, picking up grandchildren...it is only delayed.  How beautiful it is that you have found the importance of savoring the moment.  Lastly, You are You...it doesn't have to be tagged the old or the new.  I have a favorite quote from Abraham Lincoln, "Whatever you are, be a good one."  I applaud YOU for sharing.  Hugs!  Penny

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Great beginning Carol, thank you for your blog, everything we read about strokes helps in some way.  My husband Ray had seven major strokes and each time battled back to as well as he could be.  Sadly he died in 2012 and I stayed on here as a volunteer. I love the Blog community as we all support each other and learn so much here.

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I love your story Carol.  I have to say as you said to me about how my blog helped you know what your husband was going through the same is true for me.  I now feel like I can understand my husband better.  I laughed about your husband picking up behind you in the kitchen.  I so do that with my husband.  You seem further along than my husband in that my husband isn't moving as freely.  Please don't rule out traveling, kayaking, picking up grandchildren...it is only delayed.  How beautiful it is that you have found the importance of savoring the moment.  Lastly, You are You...it doesn't have to be tagged the old or the new.  I have a favorite quote from Abraham Lincoln, "Whatever you are, be a good one."  I applaud YOU for sharing.  Hugs!  Penny

Thank you, Penny for your kind words. They made me tear up. Your husband is fortunate to have you, and we are fortunate to have you on here. Your encouragement means a lot. Yes, I WILL pick up those grandkids, and I WILL get in that kayak again - but wearing a life jacket now. I love your quote from Abraham Lincoln and may steal it. Please keep writing. You are an inspiration.

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Great beginning Carol, thank you for your blog, everything we read about strokes helps in some way.  My husband Ray had seven major strokes and each time battled back to as well as he could be.  Sadly he died in 2012 and I stayed on here as a volunteer. I love the Blog community as we all support each other and learn so much here.

Thank you, Sue. I am so sorry to hear of your husband's struggles and his passing. It is so good of you to stay on here and help out.

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Wow carol, made me cry reading it, as I felt the same feelings as you. 

Thank you. It helps to know that others understand what we are going through. Best wishes to you on this journey. And should I remind you to stay off ladders?

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hi carol :

 

you write so well, and you are so well on your journey of acceptance. I feel you already know what I learnt  in my stroke journey. I stroked at age 34 which left me paralyzed on my left side & retired me from the job I loved. I never knew so much of my self worth was attached to what I did  and how much money I made prestroke. I never thought I would find joy in living again, wanted to strangle any one who would tell me it will get better life will be good again just little different. man used to drive me to wall with anger. Today after 12 years on this post stroke journey I myself feel stroke was just a speed bump in our life's journey. It slowed me down to enjoy scenery along the way. life is just different today not good or bad who would have thought just doing those ordinary things with your family along with able to go to bathroom on your own without audience is so extra-ordinary.

 

I found blogging, chatting with other survivors very therapeutic for my soul. Also having routine is must to find happiness again. Also being impatient nature also helped me become as independent as I could. I feel having stroke made me better mom & wife. t made my marriage stronger. hope to see you around more since I m official blog junkie they have saved me many times. they provided strength to fight on when sometime you feel weak to go on.

 

Asha(46 year old survivor)

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  Hello Carole, loved your blog. Tears came to my eyes, but also laughter with your husband picking up after you.  Having a loving husband helps, I know, mine would shake his head and say" it is a good thing that I love you", after I got so mad, over what? Can not remember?

 

Never say Never, I though, I never be comforable around my grandkids,. Now i love playing games with them, or just talking and laughting.  Hope, is a powerful word, and with life we have "hope".  

 

Yvonne

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hi carol :

 

you write so well, and you are so well on your journey of acceptance. I feel you already know what I learnt  in my stroke journey. I stroked at age 34 which left me paralyzed on my left side & retired me from the job I loved. I never knew so much of my self worth was attached to what I did  and how much money I made prestroke. I never thought I would find joy in living again, wanted to strangle any one who would tell me it will get better life will be good again just little different. man used to drive me to wall with anger. Today after 12 years on this post stroke journey I myself feel stroke was just a speed bump in our life's journey. It slowed me down to enjoy scenery along the way. life is just different today not good or bad who would have thought just doing those ordinary things with your family along with able to go to bathroom on your own without audience is so extra-ordinary.

 

I found blogging, chatting with other survivors very therapeutic for my soul. Also having routine is must to find happiness again. Also being impatient nature also helped me become as independent as I could. I feel having stroke made me better mom & wife. t made my marriage stronger. hope to see you around more since I m official blog junkie they have saved me many times. they provided strength to fight on when sometime you feel weak to go on.

 

Asha(46 year old survivor)

 

Asha,

 

Thank you so much for your encouraging comments. It is so great to hear from other people who "get it" and have been there. I sure hope that this blasted thing will someday just be a "speed bump" as you say. Thanks again for being there.

 

Carol

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  Hello Carole, loved your blog. Tears came to my eyes, but also laughter with your husband picking up after you.  Having a loving husband helps, I know, mine would shake his head and say" it is a good thing that I love you", after I got so mad, over what? Can not remember?

 

Never say Never, I though, I never be comforable around my grandkids,. Now i love playing games with them, or just talking and laughting.  Hope, is a powerful word, and with life we have "hope".  

 

Yvonne

 

Yvonne,

 

Thank you so much for your kindness and your encouraging response. I agree that a loving spouse is one of the best things we can have around. I must remember to be fully grateful for the positive parts of all this. 

 

Best to you,

Carol

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