Jump to content
Tarina

Hello Everyone, I'm new here.

Recommended Posts

I was looking for an online community of stroke survivors, because my world has radically changed in the last month since my stroke.  I haven't even had a follow up neurology appointment since my release from the hospital on November 5, so I feel like I'm in an information vacuum. Thank you all for creating and maintaining this site.

 

To begin with, let me say that prior to my stroke, I was in the best shape of my life (I'm pretty physically fit, not overweight, no high cholesterol, 6 months prior I had been diagnosed as pre-diabetic from an autoimmunity, but had totally reversed the diagnosis with a Keto diet), feeling really energetic and active at 43 years old.  I have two small kids, one of which just turned 10 the week of my stroke, and one who will turn 8 next week. I am now a single mom for the last 3ish years, so I was home alone with my two little ones when the stroke hit me (like a freight train!).  We had been out hiking the day before the stroke collecting fall leaves.  I was actually doing yoga with my 10 year old on Sunday morning, waiting for my kids dad to come and get them for their weekly visit, when I had the stroke.  As much of what I understand of why this occurred, is because on Thursday afternoon, I had gone to the chiropractor because my jaw was stiff (not the first time), and he worked very aggressively on my neck and jaw.  Apparently this caused a dissection of my vestibular(sp?) artery in my neck.  I felt fine, except for tired on Friday and Saturday with a slight headache which I attributed to my normal monthly cycle, so I didn't worry about it.  The doctors said that I moved a clot to my brain stem doing yoga....who knew right?

The world started spinning like I was on a teacup roller coaster ride and I pulled myself to the bathroom and threw up, my daughter brought me my phone, and luckily my ex-husband of 25 years, was calling to yell at me because I was not where I was supposed to meet him to exchange kids.  (I would not have been able to dial the phone). And I told him something was really wrong and that I was scared and needed help.  Mind you....before all this I would NEVER have said I needed help.  I'm (was) fiercely independent since my divorce.  So he knew something was seriously wrong.  He got to my house within 20 minutes of the initial incident.  He was a firefighter/paramedic and then Fire Chief for all the time we were married, so when he came in the house and saw me, he just picked me up (luckily I'm little) and put me in the car and rushed me to the ER.  I had TPA within an hour and a half of the incident.  I was only in the hospital for a week, 2 days in ICU, 2 days in Nero, and 2 1/2 days on the rehab unit, before they sent me home.  Now that I'm divorced, I don't have insurance...well Medicaid, but that doesn't count, or cover any rehab.  (And I'm waiting for the horrendous medical bills!) Prior to the stroke I was a full time student (I'm a paralegal by trade), and I ran an in-home day care, while I got some higher education to go back into the workforce AND be able to afford childcare.

 

My "new" body, abilities, cognitive function and emotions:

Physically, the left side of my body is affected by the stroke.  At first I couldn't move or feel it much at all, just totally disconnected from my brain.  I had to look to see where my hand was and what it was doing, and my left leg, well....I could sorta move it but it was so weirdly uncoordinated and I usually just hauled it around with my right arm if I needed it to do something.  When I got out of rehab I could stand, but not walk.  My face is a little droopy, but not much.  People who knew me before would notice, but I don't think new people would.  At first I couldn't swallow, but I learned how again pretty quickly.  Right now (week 5 from stroke) I CAN walk!  I use a walker and sometimes my old hiking stick- because that feels more like me- but I move like a drunken sailor.  This bothers me to an extent, because I love to belly dance, do yoga, hike, and move with grace in the world, and I don't feel like "me".

But that isn't my greatest limitations post stroke....

My eyes don't see things right anymore.  I see everything as though it is a You Tube video that is being shot with a handheld camera as someone is running down a street or through a field, that is my "new normal", and I think that is why I am so off balance.   Sometimes I still get the teacup roller coaster feeling when I try to bend down, or I move my head to look to in any direction other than straight ahead, even up and down (that makes me very anxious and scared). I always feel like that when I am trying to lay down or get up from laying down.  Needless to say I am on driving restrictions now.  

I also hear a very loud high pitch sound that drowns out everything else at times, when my brain gets tired.  I find I cant tolerate any kind of light that is in the blue wavelength, my brain goes absolutely nuts and I cant talk or coordinate my movements...so the few times I've had people take me to stores, or doctors offices, its been awful!

I do stutter some, and can't find words anymore, or repeat the same words several times in a sentence now too. Which also makes me feel like I've lost myself because I used to be able to express myself well.

The worst part is forgetting things, or not being able to organize my thoughts or actions.  Prior to the stroke, everything ran like clockwork, I had a schedule for everything that just made life easier, I did laundry, cooked, did dishes, helped with homework, took care of kids did my own school work, all of that, at certain times during the day, and now I can't remember where I even am half the time, or what I am doing or supposed to be doing, or how to do it.  What used to take 10 minutes now takes an hour and a half, both from physical limitations and having to think through every part of every task. And I'M TIRED ALL THE TIME!

Last night, I opened the fridge to make dinner for my kids, and I'm looking at a fully stocked refrigerator and can't figure out how to put things together to make anything for them to eat! I tried over and over, and ended up in tears.  The one part of my identity that is so very important to me, above all else in this world is to be a good mom, and I couldn't feed my own kids last night!  I mean, they did end up eating, but it was cereal and milk for dinner!

So, I've lost my job, I certainly can't take care of other peoples kids when I can't even take care of my own.  I can't drive anymore, so I need help with just about everything to run a household, and I'm not doing well in school.  I dropped one class and am trying to muster through the other one, but all is not lost!

Last week, before the snow, I walked to the store (after 3 failed attempts)!.  There is a little corner market just outside my subdivision, I used to walk all over this town, and it was normal for me to walk there for milk or eggs or whatever little thing I needed.  It used to take about 15 minutes to walk there....well it took me an hour and forty-five minutes this time...but I did it!  It was important for me to know that if my kids needed something that I would be able to do it!  The really weird part is that people didn't recognize me, I guess they only saw the walker....it made me start to question my "visibility",,,,did I really change that much?  Am I "ugly" now, or simply an object of pity?  Prior to this I had to make it clear that I was not interested in dating because I was always getting hit on...and now no one sees me anymore. Its really weird!

But... people have been so good to me, friends are making sure that I have everything I need, are coming by to visit, one of them even changed all the sheets in my house and scrubbed my bathtub and toilet last weekend.  What a God-send!!!!  I know this is a little bump in the road, I've had a few knocks in life and have overcome them, this is just another one...a redirection from the universe if you will.  I have good hours, and bad hours...so far, no complete day has gone by without troubles, but I cling to the good parts....I know this journey is just beginning...

 

 

 

 

Share this post


Link to post
Share on other sites

Trina

I looked at your story first because of your name, one of my old customers here in so/cal left his wife and her name was Trina, I was like could it be..................... :hmmmm:

I  was reading your story and you sound like a carbon copy of myself from the world spinning to your eyes not seeing like before, could not walk, tired all the time, everything.

I do remember when in PT trying to regain my balance and learning to walk that when I would lay down fast on the mat the world would start to spin be it just 5-10 seconds and all I could do was shut my eyes and let it pass. To this day just thinking of that makes me feel sick and I close my eyes just in case, I have only felt like this 2 times since I got out of CNS in Bakersfield.

 

I had my stroke 2 years ago 11-16-16  and was in the hospital within 35 min, In ICU for 2 weeks then the next 4 in PT, it took me a few months to be able to walk again but I can, my left foot feels weird, it feels like its lightly sunburned and pins pricks on the ends of my toes while the right foot feels fine other than I need my hip replaced but my right hand/arm feels heavier and slower than my left, my eyes are still weird but I can see and I can drive.

The one thing that I hate most is feeling exhausted, I can try to do yard work and 10 mins in I feel like I just ran a marathon 

 

Lots of people on here can help you out but it takes time, don't give up and if you have a question ASK, someone might chime in with a answer or an idea that worked for them, you never know :wink:

Maybe we can talk because I have lots of stories but writing about it is not the same as sharing past experiences with someone.

Again welcome

Ed

Share this post


Link to post
Share on other sites

Hi Tarina, nice to meet you even though this is not the place any of us wanted or planned to be.  So first things first it does get better! and that being tired thing is real and you need to listen to it. Do what you can but don't try to push through fatigue that just makes everything worse.  Also don't panic about not having insurance a lot of therapy and exercises you can do for yourself especially if you have someone to help. And don't give up on your yoga. I now do yin yoga quite a bit and it's really good for body awareness and muscle release. I get a lot of spastic muscle contraction due to brain disconnection from my left side.  Using your hiking pole rather than the walker is also a really good idea it gets you walking with a much more normal upright posture and is much easier to manage when navigating stairs and other uneven terrain.

 

The other thing that you need to hear and understand is that recovery from stroke is a long term journey, you are only just starting out, give yourself time and know that your brain will take 3 to 6 months just to heal the physical damage. But physical healing is only part of it, you also need to build or reestablish the connections between you brain and body. This thing will change you but try not to let that get to you. Life is still fun and full and you will be great mum to your kids even if it's not in exactly the way you originally planned.

-Heather

Share this post


Link to post
Share on other sites

Hi, Tarina. Welcome to Strokenet! It sounds like a lot of things were not explained to you in the hospital, which is not unusual, but, OMG, confusing when you get home and try to cope.

The fatigue you feel is extremely common following a stroke. Aptly called "stroke fatigue", it can last varying amounts of time after a stroke, from weeks to years. Even if it doesn't go away completely, it tends to get better with time.

It also sounds like you may have nystagmus or "bouncey" eyes. This is hard to see in yourself, but you can try looking in a mirror to see if you can see it. I can't see it, but it's when the whole visible parts of your eyes bounce up and down, making whatever you're looking at appear to be moving also, or appear to be unstable. Nystagmus was particularly annoying if I was trying to read something. Letters would fly off the page, or I would lose my place all of the time. I don't know of any successful treatment for this.

The third deficit that I think you may have is "aphasia"- your inability to find words. And here you may be in luck because I understand that there are programs online for this.

In general, stroke recovery is possible, but slow; slower than slow. Someone here put it well by saying, " It's a marathon, not a sprint." 

Try to be receptive when help is offered, you are probably going to need help, and, at some point, the offers of help may decrease to the point of being non-existent, and you will need to (AHEM) ask for help.

In most states, Medicaid offers a couple of services which you may find beneficial. One is in-home aide services "x" amount of hours weekly. And the second is transportation services for dr. appointments, and whatever else your state allows.

Good Journey, Becky

 

 

 

 

Share this post


Link to post
Share on other sites

Thank you everyone for your kind and encouraging words.  I'm going to be asking several questions in the other section, because I have so many to ask of veteran stroke survivors.  Please look for me in the links below.  I could really use some guidance.  I'm looking forward to joining in on a few of the chats that are available.  But I will need to set an alarm to remember, (and translate the time difference, which right now isn't working our right in my head...lol)

 

edkel1- nope, I'm not that Tarina.  🙂  I was raised in Northern California but moved all over the country since my 20's, now I'm in the Mid-West.  Thank you for the encouragement, the prospect of years of "difference" in myself is....daunting.  But, like I said before, I lived before with the philosophy that "when life throws you punches you roll with it or you get knocked out!"  And I'm not going down.....

 

heathbur- I'm so scared of doing yoga again, I love it, but like so many other things that have changed, I will have to start at the very beginning and I am so dizzy just moving my head from right to left or up or down.  If I could do it with my head completely still, it might be ok, I m still stretching my arms and legs and back as best I can- because my left side is so stiff especially in the mornings, but changing positions, my head spins for up to a minute and I feel nauseous.  But I can't wait to get back into it.  I do love belly dancing and I have tired it again, (it was pretty funny...if anyone would have been watching me) but it felt good, so I am going to keep doing what I can, I steady myself on the back of the couch, there are a lot of controlled smaller muscle contractions and releases that I can practice.   Plus it helps with the core strength and is strengthening my left leg, though it is still stationary, there are small rhythmic "squats", it also makes my left arm move (even though it feels like its weighted with a 20 pound wrist weight).

 

becky1- They did tell me I have nystagmus in both eyes when I left the hospital.  To type this and to do my school work, I am using a horrible text to speech e-reader- that electronic voice is enough to drive anyone absolutely bat S*** crazy! lol.   That part HAS to get better if I am ever going to drive or work again!  It is very exhausting.

Share this post


Link to post
Share on other sites

Tarina,  Every stroke is different and we all start off with a whole range of problems that are different from others. There are one or two standards and one of them is tiredness. As many have told you, don't fight it. Give in. The Aphasia is extremely frustrating but you are young and fit enough to make a great recovery, but, as everyone has told you, don't rush it. The standard expression is that recovery is a marathon, not a sprint.

As you go on you will find other minor problems that the stroke will have left you with. The problem there is deciding whether they are something new or just stroke related! 

The only extra advice I can give you is to try to laugh about things whenever possible, Your sense of humour is your greatest asset.

Regards

Deigh     😂   

PS, sorry for dismal emoji, having problems with internet!

D
 

Share this post


Link to post
Share on other sites

Hi Tarina :

 

welcome to best online stroke support group, now that you found us you will never feel alone. stroke changes life in an instant, but we all oldies are here to tell you & show you there is life after stroke just different not good or bad just different. being young & stubborn will help you reach your new normal faster & in content. in 2004 I stroked at age 34 which left me paralyzed on my left side,  I never thought I would find joy in living again. today after 14 plus years on this post stroke journey I can view my stroke just as speed bump which allowed me to slow down & enjoy scenery along the way. I found blogging & chatting with other survivors very therapeutic for my soul. we do have scheduled chats every day from 3-4 EST & 8-9 EST on M,W&F

 

Asha

 

Share this post


Link to post
Share on other sites

I hear you about the nystagmus. Of all my stroke problems, this one was/is the most difficult for me to cope with. I have balance and dizzy issues too, and the nystagmus seemed to make them worse, and they seemed to make nystagmus worse. If I focused on an object I'd get nauseous. And reading was a disaster. I was too busy trying to catch letters as they flew off the page, or find my place (again)to read. About mid-way through my 4th yr, the nystagmus in my rt eye simply vanished. I was disappointed when this did not help the vision problem more than it did. Everything still bounced. I'm now almost 12 yrs. post, and I still have nystagmus in my left eye, but it's intermittent, and no longer constant. Also, the bounces are more like geriatric bounces, as they're much slower now, and hardly noticeable. You may want to have your eyes checked by a neuro-ophthalmologist. They are the experts in this. Some people on Strokenet have reported that their neuro-opth prescribed prisms for their glasses to help with this problem. I'm not sure, but I think that there have been mixed reviews on their success. When I RESEARCHED NYSTAGMUS 12 YEARS AGO WHEN I HAD MY STROKE, RESEARCHERS WERE CLAIMING TO HAVE SOME SUCCESS USING GABAPENTIN (NEURONTIN). I don't know the final outcome of that research. Updated research may be available. Good luck, Becky

Share this post


Link to post
Share on other sites

Hi Tarina. Thanks for sharing your story of how you came to find our little niche. Life has sure given you lemons but you have an absolute great attitude and that is what makes good lemonade. As others have said, time is huge here. Stroke, unfortunately, isn't in a hurry to give you back the "before" you. I will say that it is good imo that you are doing so well 5 weeks out. 🙋 The good news about this is that you are at the beginning of the yellow brick road and the first 6 months usually see huge improvement. Past that things may slow down but they are not lost. You may be surprised in a few months. Yoga is so great and I agree don't discount getting back to it. Remember that word time. As far as therapy, there IS so much you can do right at home. 🙂 You need to learn where your deficits are and how they affect you. From there you can almost always find some great reputable websites that can teach you how to utilize a therapy to help you. There is a kind of mourning...you are different in many ways. Some will get better some may not as much. Acceptance is the beginning to new memories where you accept you. BTW acceptance doesn't mean not getting any better. It is a daily affirmation. It's pliable, with the ability to change with you each day. That is when you can totally look beyond the not so attentive male species when necessary (this goes for you guys as well...female species can be just as clueless). You also will be able to see who is really interested in Tarina. The dynamic Tarina! The grace of knowing you are worth as much love and care as you give is phenomenal. If someone doesn't see you...then they are not worth it. I am looking forward to more posts from you in the year ahead. 🤗 Oh yea, neuro-ophthalmologist, is very specialized in neuro eye issues. Due to the possibility of not being covered by Medicaid (my insurance at the time was great...it did cover as a medical Dr. but the therapy suggested was not covered). Look for online sources as well for types of eye therapy. I would recommend getting an initial evaluation and have the results sent to your neurologist or PCP. That way you will know where to focus. Good luck...the yellow brick road has speed bumps but it does lead you to better things!

Share this post


Link to post
Share on other sites
17 hours ago, Tarina said:

I'm looking forward to joining in on a few of the chats that are available.

You are 1 hour behind EST so chats are at 7 pm for you.  The chat times are slightly different than Asha told you.  She isn't aware that we changed the schedule.  Sorry Asha (she is one of our most loyal chatters and bloggers)!  Go to http://www.strokeboard.net/index.php?/calendar/1-chat-schedule/ to see the latest Chat Schedule.  I'm attaching a screenshot of how to get to it from the message board. 

chat - how to find the chat schedule.png

Share this post


Link to post
Share on other sites

Thank you.  I will refer back to this when I have a night without kiddos and can concentrate enough to be part of the chat group!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×