ksmith

Let me introduce myself again. My name is Kelli and I had my stroke 15 years ago from a chiropractor adjustment gone wonky. I'm now 49 and in a few weeks, my twin sister will  be 50 and I'll be 40 hahahaha. 

    I am the Stroke Support Coordinator here and have been for the past 15 years. I took a step back and work on my mental health. I was in a bad place ( nothing like unliving myself) for ,as many of you are dealing with, I was 34 and shortly before my divorce and now living on my own I accrued credit card debt. Single and living off SSDI and bills , I got a  Home Equity Loan and paid off my debit........great BUT.........

   The job I was at, let me go but not for job performance but a new policy change required a physical demand that is needed to continue to work there and my neurologist and The Arc ( after 5 years)  decided that I can't do it and I don't blame them. I don't want to put myself in harms way. So added stress there. My parents have been great and I have a savings but I'm in a quandary for if I take money from my savings ans I have to pay taxes on that so ugh.

   I'm still with my guy and I'm happy. He's younger so i have to remember that I've lived and learned . I'm in a quandary . I'm 49 and he's 38 1/2 lol (my oldest son is 30 ) but he gets me and understands my stroke issues and now had met my friend 'Peri" ( Peri menopause) yikes. We don't live together and I'm OK with that now.

      I'm working with DVR ( Department of Vocational  Rehabilitation) to `find a job for people with health issues connect with a job that knows you have a challenges and to allow me to only gross ( payroll) I had the meeting with them and waiting for the call back. I'm pretty guaranteed a spot so I'm excited to have money again for my food, because of my dietary allergies ( Milk, wheat, soy) basically makes my food choice small. cooking for myself is for sure a solution. except it's EXPENSIVE.

             I've been trying to help out with the new memberships so I'm behind the scenes. I send my gratitude to all and wish all a great spring  ( for our friends down under; Happy Fall

* below is a silly picture from New Years*

I do struggle with sleeping. I now have to take a prescription for sleep 

So April normally is my favorite month for it’s my birthday month. I had two outpatient procedures done, in as many days, that kept me down and out.  Good new is the biopsies came back negative for new growths. So plus.. then on the 21st, my parents and I went to North Carolina to surprise my twin sister for an early birthday. On the 26, she turned 48 and I turned 30…..for the 18th time. lol. We returned on the 24 and on the 25 I went back to work. I had a migraine on the trip back ( Sunday) but I was looking at my tablet for about 9 hours and allergies. Felt good Monday and Tuesday ,  with the exception of diarrhea that night but I get that way when I eat foods I’m not supposed to eat and the duration of the trip, I could barely eat. Let me explain- Went to Crackle Barrel for breakfast and out of the ENTIRE menu due to my food allergies ( gluten,soy and dairy) I was able to eat a side salad with a side of bacon. So the whole time there, I ate salads. I mean they are good for you but geesh.It is what it is. So when I came home I went crazy and ate food again.I normally get Oak allergies and I had the right on schedule….spring 

Thursday morning I got a phone call from my supervisor that my co worked tested positive with Covid. So I took my the home test kit, given by the CDC , and before the 15 mins were up..POSITIVE. Took another one and same. So my supervisor said that day 0 was Monday. So she assumes I got it from her or me to her but, no one really can be sure. On the12th,  I had a Covid test for my procedure( negative) and she had to take her test ( for work this past Saturday) and she was negative. I take all the precautions, mask, washing hands,etc..and still. It happens ,I know but I’m not returning to work this Sunday for I don’t know when I was infected or exposed. I work in a group home and even through I am vaccinated and a booster, I’m not going to chance it. The CDC says 2-4 days before symptoms is when day 0 should be. I have no idea what symptoms would be my 0? Am I being a little to worried? No. I tested positive on Thursday and that’s when I started experiencing symptoms. One can’t assume that my headache was Covid when I have vision problems anyway. Yes, I have allergies but who’s to know. My vertigo is really bad due to me nose and ears clogged. I’m exhausted.  I still have my smell and taste. Some people can function when not feeling well but I am not one of those people. I have so many things damaged in my brain that a change in the weather effects me.I have a telemedicine appointment on Monday with my doctor but I’m sorry if my supervisor has to work all the time. I’m sorry that 6 individuals, in another program, tested positive. Thankfully my parents and my sister were negative. My guy came over Tuesday and the Wednesday to….today I mean we’re quarantine together for he was here and didn’t want to be around his family with out knowing. He’s not vaccinated. 
 

I’m just glad that it’s not as bad as so have had. 
 

Am I wrong for not wanting to work sick? I mean, before my stroke, working while not feeling well was doable but now, not so much and it’s hard to try to explain that to “ non-stroke “ people. My supervisor has to cover the shifts that my coworker and I are missing. I’m not going to come back because you don’t want to work as much. Yes working a lot does suck but……..

31 minutes ago, Deigh said:

 

Yep Willis, I also would like to thank Keli for working on this. We seem to have a few problems with the site at this time which could explain why we are not getting new members joining us. For instance I'm not getting notifications via E-mail when someone adds to a message of mine. I don't  know whether its my computer or the site that  is at fault!

Deigh

The entire email system is all wonky.   Sending, receiving, registration. All we see on this end is register still has to verify the email… I would re-send it and was unaware it wasn't going through or coming through. Steve had all of this running like a sailboat and normally took care of all of this, so I don't have the access that he had. Missy, his wife, can find some, but she and I have no way to find how he did it. We are trying our best,  and thank you all for understanding.

Hi all.. Kelli here. I am aware that a lot of new members and some old have been complaining about the time in which someone gets back to them. I have emailed Missy in the past and she and I are both aware that the Microsoft outlook email address that is associated with the Strokenetwork with getting back to new registers to validate have not been being sent. As to why, I’m not sure but Missy will find out. And all of the emails that I was sending out were being sent back and I was unaware of that. i’ve been doing my best to try to figure out how Steve ran this website. But he opted to care of everything himself. So because of that, Missy and I have no idea about how to fix certain things

On 3/3/2022 at 12:52 AM, Tricho said:

Have not received confirmation emails at two email addresses and message not replied too. Thought registration had been rejected until I read this, have canceled account previously, now have signed out and used non existent email. If this post goes though, could a message be left here, thankyou.

I apologize for that. We are aware of an issue with our email system. We have had a work order with our IT department. Again, I'm truly sorry 

wow. Your story is surely a positive story, I'm so happy that you came to the site to inspire others 

please join me in welcoming ChatSueC. As most of you already have had the pleasure of chatting with her, if you haven't, she brings compassion and understanding of stroke and will listen and assist you with any questions you may have. She has been a stroke survivor since 2018. 

Absolutely, being the best you can be is often better said than done. And you're right, not as fun. I was just talking about this the other day that I'm supposed to be dairy, soy and gluten-free. Most times it's easy, but I REALLY love pizza and some pasta then i say I want to live my best life so Carpe Diem, but then I suffer from the pain. grr

On 11/8/2021 at 9:46 PM, SassyBetsy said:

I have balance and bouncing eye issues and due to location so all posts here I relate to. Therapy kept me strong and accountable. 

Different therapists have different tricks. One printed exercises and I made album so I could later do them. But now I on oxygen so my PT said I needed the cardiologist to  authorize to do  anything.

But I hope you see someone who specialized in vestibular therapy like mine because I had the Canolith repositioning procedure when I first had a stroke and I believe it helped. I am going to have the procedure again soon because recently I have been having trouble from frequent sinus and ear infections.

I am a hot mess. I stand and I feel weird off like I just got off an E ticket ride. I must wait for my eyes to adjust. My prob is BPPV plus residual from brain trauma from the ichemic stroke. But the mere fact I can stand fools others into thinking I am normal. For me I also take medication for motion sickness which describes how I feel when I am still or move or go in a moving vehicle like the chair..to complicate this is that the tiny crystals move again and again so no one can tell the reason for my dizziness and unsteadiness with nausea that chimes in. Then my blood pressure drops when I stand so add that in. Closing my eyes does not help. I try and fixate on something I know woul never move and hold onto anything except a person because I wobble feeling their every wiggle. Now I have involuntary Jerks which are earthquakes in my world. And this symphony of disfunction is exhausting. I need more sleep just being awake. When I am in my familiar spaces I am better than not familiar. Indoors better than outdoors. 

Have you ever been siting in a car when the car next to you backs out and for a second you feel as if YOU are the moving object instead? I experience this alot. And for me I must be touching something ALWAYS.  You will never see me doing a Julie Andrew's Sound of Music thing in my bathroom much less on top of a Mountain. I never outstretched my arms and stand alone. One hand needs to trail..along a wall or 2 fingers on my dresser. Or my walker.  Once my son let go of me in a store just for a second and I immediately leaned to the left but I knew Dizzy and OFF buttoned not fix it. Walking to my bathroom is like maneuvering through a fun house already but in the forest I feel like I an Unteathered in Outer Space. This floating sensation like tumbling in slow motion. I hit the floor before I realize I was listing left. My leg buckles unexpected sometimes. 

MY RIGHT LEG. PT explained for a split second my brain looses my right leg. And then it does this thing like someone pushed in my knee from the back. It is frightening because it is unpredictable. BUT THE PAIN IS NEVER INTERRUPTED. BUTsometimes it changes shape. Imagine my pain entity over my head. What feeds it? It changes colors and shapes and then textures or flavors. All I want is for someone to ask me about all those variations and not just the intensity numbers.because I can cope with burning when it is intense but not pins and needles added and this swirls in a tornado in my mind which cannot organize my speech. Did I once teach? I can barely order lunch but I can make a Dr. Appointment so go figure. Frustrating people think they can touch my leg still after all the time I am here. It burns. I feel like I stand in pain and dizziness and others tell me to hurry up they gotta go..but I am on me time in my world now. If I look to Outer edges I feel in a kaleidoscope even with new glasses. 

 

Pam, yes and yes.  Mine is caused in my cerebellum and also from my Nystagmus (eye bouncing). I have to wear a patch, or I had a special contact made to wear, in that eye, that basically blocks out my sight. I can see out of my eye but if I do without a patch or contact, one  side of my vision 'jumps'. Not only that, but I have that issue in both eyes, but worse in my right eye. The motion sickness is horrible. I was put on some, but because mine was in my brain, that medicine only made me feel sicker. I keep you in my thought and heart always. I hope you find the help you deserve. 

school bell 

Sometimes just watching an uplifting video that is meant to be joyful, it is an I cry.

Also, the way you wrote that emotional post was very well done. very poetic 

On 10/21/2021 at 7:02 PM, Madade said:

That's clearer, to me.  

 

👍

fantastic!!!!!

Check it out now.  Here is just a screen shot 

On 10/18/2021 at 6:12 PM, Madade said:

That Tuesday Caregiver is much better I think.  Friday Coffee Shop gone now?  It was also confusing, again just me.

I didn't change Friday name.  There wasn't enough room to add that so all it says is Survivor chat.. The hope, like Denny made it, when they click on it, it'll say... sorry 

To make finding the correct chats, I changed the name of the chat... kinda.

All I did was take out the day in the name to just afternoon and evening for they are on the day so no need to specify that. I also changed Tuesday evening chat to Caregiver chat to make that more evident. 

Please let me know if that makes it easier or not and I can change it back.

 Thanks x  

Home decor

Holiday Inn 

3 hours ago, will2 said:

Absolutely! It was sorely missed. I exchanged emails with Willis a few times and in that course he had a type of seizure during Church services accompanied by his wife. I'd ask a small favor or request to add a little prayer or well wishes his way. I hope he's doing ok and responds here. Willis, you are a great friend and dearly missed. Nothing can take the place of the type of care and comradery of the members here.

of course. Thank you for sharing that with us and will send prayers and please share , next time you chat with his wife, or him, that he is in our hearts

( not 24 hrs but I have time)  Team work

On 5/31/2021 at 7:04 AM, Benni said:

 

Thank you, Kelli, for your input. Doc said it would make me drowsy but it doesn't so far.

ON a non medicine note.. I was so glad to see you post. How have you been?

I was just talking about this medication today.  I've been on it for about 9 years and they have upped mine to  2x 600mg a day. Actually this lowed mine. they had it for 3x's a day but it made me loopy.. ( er) hahaha

 But seriously, it can take anywhere from a few weeks to a few months for it to be intergraded into your system. At least that was my case.  . I'm on that for the Nystagmus in my eyes but I'm sure it helps with my leg spams at night.  I hope you finally find relief 😘 

OMG Tracy, I was just telling someone that when there is a big gust of wind,  swear I will blow over

On 4/13/2021 at 3:14 PM, Willis said:

 Kelli the smoke smell would bother me. It has been years since I quit. The best is when we do go out to eat we don't ever smell it. 

Yes, I quit right after my stroke and they say ex smokers are the worst. But I can admit EVERY once in a while, I don't mind the smell of a menthol. Crazy.. I'd never smoke again though. 12 +  cold turkey as they say. I'm not sure if a doctor or nurse or a mental  Hallucination  but I was told if I smoke again I'll die.  So.. stopped for I was sacred to die....

On 4/4/2021 at 12:37 AM, LgSeaunier said:

. My husband wanted cats.

I am THAT cat lady as well. My small 900sqft place looks like PetSmart. On social media, you'd never know I had human children lol

Going back into a place again must be sad/scary/love/peace all wrapped into one.  I think that you are very strong and will find that once there, you're living for you both. He is in your heart. Try to think before the stroke and the happiness and love and wrap that tight and put that in your heart and mind.  Love is a powerful bond my friend and it's still raw and of course you're going to be in a "funk". Allow it but don't let it take over. With the warmer weather, walks are nice, nature, grow some Herbs ( basil, rosemary..etc)  

( I'm the odd ball here ** Hippy Buddhist full of Magick ❤️💛💜 but I smudge twice a year ( spring & fall) with sage and monthly with cedar with good intensions and ask for peace and good energy to guide me)

 ( closet I could find to a virtual hug) 

And the sign my parents got me for Christmas ::