HostTracy

This was the hardest project I've ever done! It took like a month and a half and my daughter helped carry those bags of mulch. I was so proud when I finished.

Oh man have I felt your grief in the past 3 years at times. In fact I just wrote in my blog how I actually went to sleep and slept through the night like sorta normal except it was more like 12 hours. The last 6 months my sleep has been an entity of it's own. I also remember riding in I call them rolly carts...It meant some freedom but I still was a vertigo mess (lol I probably needed a license to drive one back then). I was a bit of a social butterfly before the stroke and went to a tortured place where I was afraid to leave my house and then to just specific places. It took a long time for me to venture out more and more (believe me I'm still a homebody after 3 years post). I did though, eventually. One thing that helped me I guess not be so hard on myself was finding projects around my house. I decluttered my entire home (this took me over a month working about 10 mins. at a time before resting or napping and then I'd get to it again). I also took all the grass out from around my front porch/shrubs and put down pretty mulch. OMG this took so much out of me. I worked outside for 5-10 minutes and then layed down or napped in between. It also took more than a month. I made myself focus on these things...I really did MAKE myself focus and it was hard but man I felt such accomplishment once I finished. Projects can be anything that you can or want to do within your current physical status but they still may be really hard but for me it helped to work on these. I also have a question since I read your post...have you had or do you have outpatient OT, PT, or Speech therapies? If you are just working on this yourself I know there are a lot of places (online or just from your Doctor) where you can get detailed therapies for where you are at in your recovery. I know sometimes people just can't "go" to these therapies for several reasons but if you can then I would in a heartbeat. I felt so defeated when my PT told me to go to the store and use a cart to walk behind not the rolly cart. She said only go as long as my body says ok and then stop and go rest. I hated this. There were many times when I worked on therapies that I hated it. It was hard. Stroke is hard when you are recovering and can be hard for a very long time for many. Just know you are not alone we are here and we hear similar issues many of us experienced or experience. Keep on ranting it's ok. Get it out. Tracy

Thanks Heather I have a good feeling.

It's been a different spring into summer this year. Things are just different. It's been a year since I moved from Nashville and away from who I thought I would be with forever at one time. I see my Psychiatrist every two months and tell him every time that my dreams haunt me. I dream about Adrian almost every night...not the "I want to be with you" dreams but dreams that don't feel good. I can't explain...My dreams can be scary real feeling since my stroke many times I have to wake up well before I realize it's not real. They can also color my mood for the day. I also have unavoidable thoughts of him constantly. Again not the "I want to be with you" thoughts but just in my mind thoughts. I physically try to stop them. My Dr. says it's called rumination and a part of my anxiety disorder. He told me when I get my disability and insurance happens we are going to get me into cognitive therapy which will help me cope better. I guess that is another thought that goes through my mind constantly...Will my disability hearing be positive. I am scared. I hate to admit that but I am. Today I started watching my two nieces every other week for the summer. They are good kids and if they get a little rowdy I just talk to them about how it affects me and they are always eager to make the moment better. I have to admit though that even though we relaxed and had a calm day I am still blah. It means that I feel more exhausted than usual, have a headache, stuttering, dizzy, just good old brain fog and have had to lay down just to rest...still need dinner and meds and getting ready for bedtime before sleeping. It's been super hot this year...It seems more hot than I remember for a good while. My body does not like it. Fibromyalgia...heat, stress, weather, getting sick, and a plethora of other things can set off a flare. For those that have this....My shoulders, neck, back, hips, elbows, knees, stomach are all unhappy the past few days. I am tired of my whining lol...oh well at least my blog doesn't have to be for everyone sometimes just for me. I have fallen down the stairs again...but I have to do laundry (it's downstairs) lol thankfully no tumbling just missed a step. One great thing is that I have slept through the night for the past 4 days! This is a fantastic achievement because my sleep cycle has been way off for 6 months now. I'm stoked! It should only get better from here since I will need to be ready for the girls by 7:30am at least every other week. This blog is so random...My apologies. I've had so much on my mind lately and been a bit moody so I just have to let it out. My dad has to get a biopsy on his lung (a spot on) next week. Already had a PET scan and it's suspicious. The wonderful thing is that he hasn't smoked in 5-6 days! That is major because he has smoked since he was a teen and he just turned 75...even after a heart attack and 5 bypasses he still wouldn't quit. I'm praying this will last. Not only does my father need a biopsy for lung cancer but also has COPD now and is on oxygen. I'm trying to tell him and myself that there is nothing we can do right now and worry will be useless but that is easier said than done. I just pray. As for my summer may I find some time and energy for fun...make some new memories.

Sue I am so glad you got to get away and spend time with family! Getting away from home is a bit of a vacation. Does it get really cold there in the winter? I ask because it is summer here and the hottest I've seen in years...blah. I will live vicariously through you as long as it isn't super cold LOL. You enjoy those moments away and we will be your cheerleaders when you go for all those appts. and tests in the future!

A hug for all the pains big, little, inside, outside and an understanding of why bitterness finds its way into our world. Pam you keep inventory of what, who, or how brings you joy on the inside no matter where it comes from and you go to those things as much as you can. Not to forget or take the place of...But just to allow you joy, a smile, a moment to remember, a piece of positive, a warm hug, some peace within. I hear your words. We can't ignore all that brings us pain but we can aspire to our piece of inventory that brings us moments to rise above. I hear you.

Positive vibes. Thank you.

Nancy you are such a gem. Being one of those stroke survivors that go from no common sense lol to quoting from a health manual, I can totally appreciate your plight. I shock myself sometimes...how can I not handle this circumstance and then 5 minutes later I'm giving a solution to a more complex problem. To me I feel like it goes back to how we remember and file our memories. All those files are still there but our brains can't find the right file cabinet sometimes. But then other times we stumble on an important file cabinet and we explore for a while. Yes, confusing. I'm glad Dan decided Tylenol was doable and I hope it's helping.

Asha I would say all good parents find themselves in the same position at times. It's a part of growing as a parent and a child. You're doing great.

OMG Kelli your sound thingy scared the poo out of me it was so loud on my phone ! I am so glad your "me" day really made a big happy splash Pam!

I second everyone. From all your posts you have raised a great son. No matter what lies ahead or any bump in the world he will navigate. I think you and your husband have made some pretty amazing wings for him to fly. It may be his own way but enjoy watching him fly.

Great words Heather!

Yes rest!!!! My mom also swears by saline nasal spray and after she can blow her nose effectively when sick. She has tried a Nettie pot and can't stand it. It is a good way to help clear nasal passages and breathe better naturally. I sure hope you feel better soon.

A very nice fuzzy story that I very much enjoyed reading. Thank you Pam.

Sue I can totally respect where you are coming from. I know I have let the mean thing out of me and I don't always feel bad about it. Some of my deficits make it difficult to advocate for myself in a way...When I find myself in a spot like that I can be like a bomb. Sometimes people bring it on themselves...I know I'm pretty patient and know I have empathy toward others but if someone blatantly disregards my boundaries and lacks this then self "advocating" is the answer...then so be it. This Is my nice way of saying I am not always nice...Lord knows that I always try. Pam if a CNA said that comment to me in your situation that could be one of those moments where I might not be nice. So hugs again with Sue because I hope they just help you feel better. Some people are just not cut out to be what their profession is.

Pam I can't even imagine myself and how I would deal with some of these things. I do know that you are a person who deserves nurturing and dignity. That being said, I understand that this has fallen short for probably many reasons...some innocent and some not depending on each person...which is a shame and unacceptable. Your voice and experiences I hope can be a shield for these types of insults. People....People are so different in what they are educated on, what they feel, their perspective, their reasoning, their approach...everything. it is my belief that you have to learn you and then learn tolerance at times. Pray, educate, and learn about others and what may affect their choices and behaviors in life. Hope that your experiences afford you those moments. And yes, advocate for your own rights. I feel everyone should be afforded the same. Really take the good from those experiences with others that inspire you so as not to forget that there are others who love and inspire. Boundaries are imperative and self preserving...so important. I am so sorry that there are times when these things do not help and insults happen. I know it must feel really bad...wrong. I am sending you hugs Pam and hoping that my good thoughts and hopes reach you.

Asha I'm so sorry how this has made you feel. I am going to tell you about my own similar issues with procrastination or avoidance which may or may not shed some light. When I went to college it was the first time I was in control of my own motivation and experiences. Well that is just a part of growing up and becoming a successful adult. What I didn't know is that I suffered with anxiety (mine is hereditary between all but one of the women in my family but anxiety does not take genetics to show up). Coping with anxiety when you don't even know you have anxiety can lead to procrastination and avoidance. Dealing with life decisions is a difficult thing...for everyone. When people with anxiety are dealing with life decisions it may trigger that stress and it is natural for people to move away from something that gives us this "stress" like pain. I know your son is brilliant and success is in his future. What helped me was cognitive behavior therapy counseling. I was 33 by the time I sought help this is after I had done this same thing (avoid, move away from or just nothing) and was depressed and knew that I had disappointed my family (especially my mom which is in no reference to you at all) and some of them felt I was just lazy. My psychologist taught me how to recognize this anxiety I felt and in doing so taught me new ways of coping. If someone has this kind of anxiety it is something that can be helped by recognition and behavior modification. It can help those moments that may feel unbearable due to anxiety that may cripple our decisions and actions and you learn how to push through and succeed. That in itself is empowering and it's like a domino effect...recognize...accept...push through using new coping skills...succeed...build confidence...take on new or harder challenges with success. Anxiety is not something to be embarrassed about or judged it can get extremely better with a little help. When I finally went and acknowledged for myself what I was experiencing I truly worked with my therapist to build new better coping skills. I was able to use these skills in my own life and I conquered so many things because of that. Unfortunately, now with my stroke my anxiety does not react to my coping skills but that is another story lol. Anyways, this may or may not be something your son is experiencing and if he is know it is no one's fault and there is a way to help. Don't take my story for an answer just an example of why I was procrastinating and avoiding important life decisions. I wish your family the best and hope you get some answers for your concerns soon. Hugs.

Jay that is great news! I think your poetry is really uplifting and deserves to be published. Congratulations!

Boy, I have read back through some of my replies lately and wow I have had a lot to say. I am going to call it passionate response. I am so happy that I have an outlet with Strokenet and now another with my local stroke group. I have a lot to say and have a lot of thoughts that I can be really passionate about. I sometimes want to do more...educate others...help improve medical therapies...bring light to subjects about stroke that seem to be put on the back burner. I know I am extra passionate about the type of stroke I had. Also that I am 45 (42 when I stroked) and looked over because of my age which played a part in not being diagnosed until 2 months later. Statistics say that in a research group of 2000 consecutive cerebellar stroke patients (1987) had a mortality rate (23%) almost twice that of cerebral strokes (12.5%) and brainstem strokes (17%). These of course may be different now 20 years later. But it shows you that cerebellar stroke is no joke. Part of the problem is the difference in cerebellar stroke symptoms and the problem with missed diagnosis. I think about this when I think back to my missed diagnosis. I was sent home in less than 48 hours of having a massive stroke. In cerebellar stroke the days after the stroke (1st week) are the most dangerous. The swelling in this area due to tissue death and damage can lead to serious and deadly impacts. Swelling and edema in this area can lead to herniation of the cerebellar brain tissue up or down, can obstruct the 4th ventricle causing direct brainstem compression. This can lead to deadly herniation of the cerebellar tonsils into the foramen Magnus. All in all this can lead to death. Phew...I need to shop. 😡

My father who is diabetic and has COPD is finding himself in a similar situation. He is having shoes fitted for him but can't until he gets swelling down. They prescribed compression socks and for a week his legs looked like twigs with softballs at the ankle. He is having to wear these for 3 months before they will make his shoes but will probably always have to wear the socks. I hope this gets sorted out and you get to enjoy your new shoes Pam.

My best of luck to you on receiving what seems to me a necessary. I wouldn't just take no for an answer. I so agree with the above posts. I would be worried about his skin and tissue integrity. You keep fighting. Good luck to you both.

A perfect example of making the small things county. I'm so happy these pencils give you joy and enough to pay it forward. My grandmother who passed away last year at 97 loved her adult color books so much. She had a whole drawer of them and a container full of many kinds of color pencils. I can't tell you how many times I watched her sharing color time with so many of her great grandchildren. She colored every day and it brought her infinite joy. This brings back a great memory for me.

Wow George it sounds like a wonderful trip and with wonderful company. That my friend is living. God Bless and welcome back to Tennessee in August (fellow Tennessean myself).