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Stroke Survivor - female
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About Pearls

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    Associate Mentor
  • Birthday 11/11/1950
  • Age 69

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  • Stroke Anniversary (first stroke)
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  1. About a year or so after my stroke everything tasted like dirt, literally, everything except orange juice and vanilla milk shakes. No, vanilla is not my favorite. I prefer chocolate and mocha but ewwww, dirt. Instead of forcing myself to eat dirt, my new diet consisted of the above because I decided some nutrition is better than no nutrition. I lost forty pounds. And then my taste started coming back and so did the weight. I think the problem lies in a nerve that goes down your face that affects your taste buds. Mine came back on it's own. Wouldn't it be wonderful if we could control it?
  2. Pearls

    Seems to me you are trying to reason with someone who cannot reason. Always a lost cause. You are reacting to Dan as if he were able to control who he is. Might I suggest that he is unable to control his personality and decisions. Stroke can affect any part of the brain including emotions, personality, decision making, incontinence. This is what brain damage looks like. Don't take it personally. It doesn't have to make sense. You are blaming him which is causing you more anger, frustration, and resentment. At some point you need to let go. No matter how much you love him love is not going to make it better. That is a harsh reality. I watched my mother go thru Alzheimers and she became very belligerent towards those she was closest to. You cannot take it personally. I also had a friend with brain damage from a car accident, same thing. Is Dan on meds for his anxiety, depression? That is the first thing I would address. If he is, perhaps they need to be changed to something else. Talk to his doctor. From me to you, many hugs.
  3. Pearls

    I understand your frustrations. I hear patients go on and on about how wonderfully they were treated by hospital staff and then I wonder if something is wrong with me because I have had a few terrible experiences at the hands of staff and cannot always say the same thing as others. Most of my encounters have been good but not all. To expect a patient to be in charge of what a driver does or doesn't do is bizarre. Staff knows better than that. Administrative staff (not nursing) should have taken control and remedied the problem and not quibbled with a drug induced patient. You were their responsibility the second they put you on a bed. There are good IV technicians and poor IV technicians. In a lot of hospitals these days not just anyone is allowed to insert or remove an IV. It is considered a specialty and there are specialized IV teams that travel from patient to patient who know all the tricks on dealing with difficult veins. It also sounds like staff was having a bad day. I try to use humor to diffuse a situation but when that doesn't work I simply ask staff if they are having a bad day and I am usually surprised at what they have to unload. It tends to mellow them out when you extend a hand or an ear to them. You survived it Toots and in the end that is what counts. So sooooooooo happy you are able to walk without pain. This is a looong journey but we are Survivors because we are strong. Hugs and smiles.
  4. STROKE AWARENESS MONTH -- I have just joined a small local Stroke Support Group at the hospital We have been discussing what we as a small group can do to reach out and increase awareness.  Any suggestions??


  5. BLOGS -- Still trying to find my way around the newly designed Strokenet. Is there a comprehensive tutorial? My dh and son are planting trees for me to view out of my forever window. A Golden Maple, an Autumn Blaze Maple and an Austrian Pine tree. Such lovely new colors to feast my eyes on and hopefully they will attract more birds and maybe some new species for me to identify and observe.  I love birdwatching.

  6. Benefits of Stroke --OMG I used to be spitting mad whenever someone used this phrase. It hit a nerve like no other. It's been three years since my stroke and I've learned a few things about myself.  Several months ago I went ziplining. I have trouble walking across a room. If I go somewhere that requires more than going across a room I need a wheelchair.  I was in a rut. I needed a challenge. I have always been afraid of heights and speed. I do not go on carnival rides. Well the bigger the rut, the bigger the challenge. Walking thru the forest to the jump off tree was the most difficult part. Getting hoisted up into the tree on a pulley I had a quiet panic attack. By the time I got up to the jump off platform I had trouble breathing but I kept moving forward. Flying thru the tree tops at 35 MPH turned out to be fun. In fact, I did it three times. It has turned out to be the biggest confidence booster I could have chosen.  If I had not had a stroke and become paralyzed I would not in a million years have chosen to go ziplining in my old life. In my old life I was living in my comfort zone. I was not pushing myself to do extraordinary things. The next thing I learned was that I was living in a confined space in my old life. I have always been a creative person and that is truly where my passion lived. Being able to use only one hand and not very well at that I struggled to find creative outlets for myself. Most creative endeavors require the use of hands. The right side of my brain was damaged during my stroke and they say that is your creative side. Whether or not that is true doesn't really matter. I no longer had the dexterity I once had and it seemed that other parts of the creativity were starting to fade. What an incredible loss of identity to follow after loss of body, loss of job and loss of dreams. Somehow I got elected to be head of my HOA. Probably because no one else wanted to do it. I really didn't want to do it but I'm the kind of person that will step up and do things if no one else will. The HOA became involved in some legal issues and the next thing I knew I was doing legal research............and I enjoyed it. I enjoyed it with a new found passion! Now I am studying to take the LSAT ( the entrance exam for Law School). I don't know if I'll ever go to law school. I'm 66 but who knows. I am loving every minute of studying except I am having trouble holding the pages open in the book and I have to print instead of writing in script. AGAIN I would not have discovered this part of myself if it weren't for my stroke. Am I glad I had a stroke? He** No.   I've become an avid problem solver. I am continually thinking about how to do things differently to make them work. If I can't butter a slice of bread, how can I approach it differently? But it is spilling over into every part of my life, even my relationships. Is that my creative side or is that my analytical side? Some days my mind is full and other days the fatigue hits me. I have to plan ahead for the fatigue and it is a real downer but I am better at adjusting than I used to be. Three years ago the fatigue was always there. Soooo much I have learned about myself, about others, about the brain, about life. This is certainly a different life than I would have chosen but ha-ha, there are some benefits, some new discoveries.

    1. Pearls


      One more Benefit I forgot to mention. Prior to my stroke I had a problem with Vertigo. Severe problem, was at the ER three times. Since my stroke the problem has disappeared. Gone.


  7. Pearls

    If you make too much, I looooove peanut brittle. I would even buy some from you. Name your price and I am in. I can almost taste it now.
  8. Pearls

    Okay Stop and ask yourself "Is this working or not working?". Sounds like it is not working therefore time to change strategy. What can you do differently? Are you using earbuds just to block out roomie or are you listening to music? During the day do you stay in room or do you take a walk and change scenes? Do you journal? What frustrates you the most? Tackle one problem at a time. What soothes you? Do you read? Do you reach out to others and see what you can do to help comfort them? How much are you socializing? I am concerned about your stress levels. What is your reward system? What do you do to be nice to yourself? These are just a few questions to sit back and ponder over in a quiet place over a hot cup of tea. If you are in need of a good book I am recommending my new favorite: A MAN NAMED OVE. Fiction Will make you laugh. Much love to you. MERRY CHRISTMAS.
  9. Happy Birthday Pearls!

  10. Pearls

    Another fall. These are like milestones in my life but in a regressive way. Went to book club at a friends house whose husband just died. It was raining. I made it up the concrete steps to the porch just fine. And then when I was on a flat surface i met the concrete. Skinned up and bruised but nothing broken. Luckily I had six people to help me get up or I'd still be laying there.
  11. Pearls

    Good question. I don't know but I would guess for a looooong time. Your mom had 18 children??!!!! OMGOSH! What a woman!! You must have been the lucky one. (Sarcasm). Like you I am paralyzed on my left side but I can not walk up inclines or handicapped ramps. I can do stairs, lots of stairs, if there is a railing to hold onto. Something about a ramp just throws me totally off. I avoid ramps because they are just too difficult for me. I am impressed that you are able to get the scooter in and out of the car by yourself. Is it one that comes apart in two or three pieces? I just had a big dramatic fall today. i'm sore but nothing broken. I haven't fallen in a long time. I fell on someone's front porch. I made it up the stairs okay and waited till i was on a flat surface to fall. Life goes on. Have a good evening.
  12. Pearls

    Praying for your grandson, his mother, and family. What is his name?
  13. Pearls

    Hope you didn't hurt yourself. It seems everytime I think I am doing Really well I fall. When I am not doing well I am very careful. I forget sometimes that I have to be careful all the time.
  14. Pearls

    Exploring the Possibilities

    Leave no stone unturned. There was a time when I was younger and without a physical disability. I always tried new things. Somewhere along the way I started to accept the status quo but if you don't try new things, you stay in the same old place. As long as you are alive you can move forward. You will not always succeed but failure is just another stepping stone to success. It is a learning experience. I have always been a perfectionist. If I couldn't give something my all out best and do it well then I didn't want to do it at all. i had very high standards. I have learned that just trying something is my all out best. I no longer compare myself to others and their successes. I compare myself to post stroke day one and day two and I am amazed at how far I have come. Holy Cow. i still have frustrations and my soul still aches for the former me. I still face obstacles. Many obstacles. I still have problems. Many problems. But it is like I am starting all over again, trying to discover who I am, what I am Good at, what I am Not good at. I do not have the same set of skills but I still have potential. I may have to cross three bridges instead of one but I can do it with some extra work. It is more difficult but I am strong. I can adapt. I will not let others define me and I will continue to explore all the possibilities. i will fight for me in my own way in my own time.
  15. Pearls

    However (read previous entry) it just wasn't working for me. I couldn't sit up straight and my body kept leaning back. Whenever I lay flat on my back with my head hanging lower i get very nauseous. We adjusted and readjusted all the straps many times. By this time i was not only sick to my stomach but was short of breath. We eventually got it worked out with much trial and error and I was pulled up to the tree platform. Once I got up to the platform I had to worry about my balance. I was tethered on in three places and had three strong men holding onto me who were also tethered. There was no way of falling but I was still terrified as my toes hung over the edge. I have always been afraid of heights and speed. There was a little bench on the platform with two steps up to it. It was about two feet high. I next found out that I had to climb up on the bench. No way. It was very skinny. Somehow three men muscled me up there and my toes were really hanging over the edge. I did not look down. If you have a strong core and torso you can sit up without holding on. I had been holding on with my one good hand to the strap but did not feel confident that I could continue to hold on. It was a long zipline. So we hooked my good arm around the strap and I held onto my harness which was a narrower strap . It was a trade off but much safer and doable. Everyone told me goodbye and off I went 35 mph through the forrest canopy. I kept repeating outloud that I was doing this for all the other stroke survivors who didn't have the means or the wherwithall, not the zipline per se, but the return to normal life, the return to a joyful life, the conquest of fear. trust me I was afraid, just afraid as I had been taking my first step without holding on. But I was determined that I was not going to let fear rule me. I was going to find that well of courage that I knew was somewhere deep inside of me. I was going to succeed. I did three zips that day. I think I was on autopilot. After the last zip I had to walk down two flights of stairs and back out of the forrest on a wider dirt trail enhanced with large rocks. Everyone held onto me and I walked step by step slowly but surely wth my guides/mother hens making sure I missed every rock in the trail. Sooooo....... Was it easy? NO it was not easy. I came to terms with the fact that I was no longer the person I used to be, that everything would be and was harder for me in this new body but with effort and courage i could still do things. It would take more work, more problem solving, more frustration but in the end that was the hand I was dealt and I had to accept that to move forward. It was well worth it. Being able to fly thru the trees is an experience not every person gets to take. I met wonderful people along the way who supported me and encouraged me. I went looking for them and I found them. just like on Strokeboard. i put out my hand and said :: Help me and they did. I have tears in my eyes as I write this. We are all here for each other and life is still wonderful, different but wonderful. never give up. You never know where it is going to lead you. There are many paths in life. Choose what is best for you. Prayers for all of you.
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