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The Gift of Time - Stroke Recovery

$15,565 of $17,000 goal

Raised by 246 people in 5 months
On the afternoon of November 10th, 2017 I went and had myself a stage 3 non-aneurysmal spontaneous perimesencephalic subarachnoid hemorrhage - my very own stroke after years of helping other stroke survivors and caregivers. The irony is not lost on me. Even though my long term prognosis is excellent, I am still facing several months of recovery to get there. In full transparency I am asking for help for three main reasons...

1. Because I am hoping that I can have the ability to return to work when it makes sense for my recovery and not be forced back too early for financial reasons. In all my years as a stroke expert one thing I know to be true regarding brain injury/stroke recovery is you only get one shot at it and how much time, space, and rest you give it on the front end, the better overall outcome. I am asking for the gift of that time… to do this right. Time is short and precious and I would like to spend more of it focusing on healing and less on worrying about the weight of the financial strain.

2. Because I am scared and feeling very vulnerable. My symptoms have prevented me from taking people up on their offers of visits, food, or other means of support. I desperately want and need to feel those connections and even just seeing comments on Facebook or even a small donation here would make me feel a little less alone. Many people in my life have asked of ways they can help, and even though money can’t take way the road I am now walking on, it is a small way to make me feel like we are on this road together.

3. Because if I have learned one thing through all this – it is the importance in saying how you feel and asking for what you need. I believe there is no shame in asking for help, rather it is a sign of courage and I want to be an example of that. I won’t be able to do this on my own, nor do I want to. Over the years I have had the honor of being part of many people’s journeys as they navigated difficult situations and events, and now I am calling upon those who care for me. While I am not entirely sure about how this will all play out – what I do know is I have a 7,000 dollar deductible and will be out of work for several months best case scenario. I don’t have an amount or end goal in mind – I just know that every little bit will help ease some of the pressure I am under while I begin the slow process of recovery. In the end, more than the money, it is the act of support that means so much to me. A small way to feel the love of my village <3 With Gratitude, Robyn




 *** For a more complete account of what happened to me and my ongoing updates please check out my public Facebook page https://www.facebook.com/robynwheeler1111  ***  



But here are the basics of where I am at today: I was in the ICU for several days and was discharged home after 10 days, out of the woods for most major medical complications but by no means “better”. I continue to have a raging headache, extreme photosensitivity, neck and shoulder stiffness, and positional nausea. All of which are exacerbated by pretty much any and all stimulation. I am home but I'm basically unable to do anything besides shuffle from the living room to the bathroom and to munch on a little bit of food.  I can't handle the movement in cars let alone driving myself, direct sunlight or any bright light anywhere near my visual field is an absolute no-go, and it is taking me two days to write this post in little chunks because looking at the computer for too long makes me implode. I'm getting varying accounts of how long this will take to resolve, best case six to eight weeks and worst case three to six months. Once the effects of the irritation on the brain tissue, and other things such as the pain from the blood draining down my spinal cord have dissipated we will see what if any long-term effects will come from the stroke, though it is my professional opinion I’m going to do very well. As my friend Frank said, this is the best type of stroke to have other than no stroke at all. Regardless of the long term positive outcome, today sucks. Tomorrow will likely too and it going to be pretty difficult for the next weeks and months. While I am celebrating that my long term prognosis is optimal, that does nothing to aid my current situation and stresses. And how can I not be worried about money on top of all this... I have insurance but a fairly high deductible (7,000) and will be out of work for likely several months, easing back into at part time when I feel up to the stimulation. So many people have mentioned that I should have a friend or family member set up a GoFundMe account to help take some of the pressure off and give me time and space to recover– that it’s ok to ask for help. It is, and now I know it is more than ever. But rather than have someone do it on my behalf I am going to buck the system and just ask myself – I think our society is sometimes scared to do such a thing directly but I have no room for fear these days. Im hurt, Im scared, and Im stressed. If asking my village for a way to relieve even a small amount of that stress is an option, I know that is what I would want for any of you if the roles were reversed.
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(Update 2 of 2)

While we are on the subject of transitions though…. how about some happy news!

I have had this visual playing in my mind of Wayne and Garth playing street hockey – and then the car comes by and stops the game. “CAR…. CAR…..” or in my case, “STROKE…. STROKE…….” and now the car has passed, the stroke is healing, and it is “GAME ON!!! GAME ON!!!!!”

As many of you know I left my Director of Nursing and Behavioral Health role just three weeks prior to my stroke. I was smack in the middle of sorting out my next adventure though interviews and exploring brilliant suggestions from colleagues when all of it went on pause, "CAR, CAR". However, I am just tickled to officially announce that after being medically cleared to return to work, and personally feeling ready as well - here we go again!!!

I have accepted a lead nursing position with a Forensic Assertive Community Treatment Team in Hennepin County. It will be a slow start, they are very aware and very supportive of what I have been through in the last three months and some of the anticipated bumps that may occur as I transition back. I am beyond excited to have a professional purpose again, a little structure to my day, and a chance to work alongside people at the difficult yet tremendously rewarding intersection of severe and persistent mental illness, brain injury, and the criminal justice system.

NONE of this would be possible with you the support of my village though. Through your support I was given the gift of time, literally, to do this whole healing thing right. I was and still am overwhelmed but the generosity, the kindness, and the love Matt and I were shown during these last three months…. We were cooked for, cared for, financially supported by so many people. Folks brought me flowers, balloons, gifts, mac and cheese, coloring books, stuffed monkeys, pizza, socks, anti-nausea tools, soup, smiles, and so much more. I received hundreds of messages, Facebook posts, emails through the hospital patient portal, inappropriate yet hilarious memes, cards, phone calls, and hand drawn pictures. People came and walked with me in the hospital, got to see the glory of my bed-head in person, and took me to coffee and dinner once I was cleared to do so. People have cried with me, but honestly mostly laughed with me at the hilarity of this all!! People prayed for me, thought of me, spoke of me, and a bunch of people even rowed for me (Orangetheory Fitness Eden Prairie)!! And money – oh boy did we receive money!! Frankly, having a stroke is ridiculously expensive between the medical bills, three+ months off work, Matt’s time off to love on me, and all the unforeseen expenses – we are certainly not going to come out of this ahead, but we are in a MUCH better position to weather this financial storm because of all of you.

I would be extremely grateful for the opportunity to send anyone who supported Matt and I during this process a real, tangible, handwritten thank you card!!! Please email or private message me your address so I may show my appreciation. Also, once I have a chance to settle into returning to work and the new routine of it all – I would LOVE the opportunity to invite myself over to your house for dinner or even grab a cup of coffee to thank everyone in person as well. I have collected some pretty interesting stories through all of this and I would be thrilled for the chance to share them with you!

Game on, folks…… Game on!

-Robyn
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(Update 1 of 2)

A transition period is a period between two transition periods (George Stigler)

--------------------------

It has been almost two months since I posted a solid update. Honestly, part of me didn’t realize it had been that long - so much of what has happened is simultaneously zooming by and is dragging on forever. Part of it is there has not been much to say – fun fact, recovery is rather monotonous. I made such measurable and significant steps in those first six weeks that what came after seemed uneventful in comparison. But lastly, part of why I haven’t updated is because in the most amazing way the stoke has almost faded into the background as something that happened to me rather than something that was happening to me. It is becoming a passive, past-tense event in the story of my life – one more point of change and transition that has slowly and naturally given way to the next transition just as the transition that came before.

Cue the music.

…. It’s the Circle of Life… The Times They Are A Changing… Winds of Change… A Change is Going to Come….

While, yes, so much has changed since the stroke I had three months ago today – but in the end most everything remains the same. It is cliché, but that doesn’t make it any less true.

Matt and I did what we do best – we turned this stroke into an adventure and carried on, simple as that. He is the thing I am most grateful for throughout this entire process – it has been 8 years together (yesterday, actually) and there has yet to be an adventure, a challenge, a change we haven’t come out on the other side stronger because. This stroke was just another transition, albeit a big one, for us to dance through together!

Three months out I am more confident when I say I do not believe I will have any long-term deficits from this stroke, at least not the kind people usually associate with strokes. Though, if I am being honest there is a subtle shift in my visual processing that I may need to address soon. In addition, I have these underlying headaches that I don’t remember experiencing before which are popping up fairly frequently these days. And to be expected I still have some heavy anxiety and PTSD related to having a front row seat to the most bizarre experience, but I am working through that. I don’t know if that will ever fully resolve, but as I have said before all things considered…

I will also be at risk of a few potential consequences that have just not presented themselves at this point, they could tomorrow or never at all. Worsening headaches and short-term memory issues- these are the most common things people identify down the road after the type of stroke I had. And the worst of all the possibilities would be the high statistical probability that I could develop a seizure disorder even years later. We will cross each of those bridges if and when we ever come to them.

To everyone wondering – I’m ok, truly ok. Or at least ok’ish.

Most what I am working on now is reducing some of the secondary consequences of being inactive for 3 months, which let me tell you are no joke!!! My stamina, my energy level, my whole freaking body have changed. Let me sum it up in one fantastic situation that went down last week. Prior to my stroke, hot baths were one of my go-to relaxation techniques. I haven’t really been comfortable taking baths since everything happened because I am struggling with some PTST reactions as I was in the tub for a short time when stroke was occurring. But last week I decided to not let this stroke spoil something I loved to do - so I drew myself a hot bath, with a lovely LUSH bath bomb, candles, the whole works. I filled the bathtub to the point where I have a hundred times before and in I got… only to have the whole tub overflow the edges onto the floor in one epic splash. Think the scene from Titanic where water fills the hallways. I came running out laughing and yelling at Matt “I am displacing more water – we have reached the point my body is now displacing more water!!!!!!!!!!!!!!” Who knew eating your emotions and laying in bed for three months could have such an effect :) So now that the majority of the official healing from the stroke has occurred, its time to focus all the other indicators of health. All is well – it is just a body in flux and another transition to face.
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I don’t wish having a stroke upon anyone….

However, one of the unexpected and wonderful consequences of having a stroke is the community-wide-group-hug you experience. Your closest friends and family step up their game big time; colleagues, both past and present, transcend their roles and support you in ways you could have never anticipated; and more interestingly people come out of the woodwork from all directions and shower you will levels of love and comfort you didn’t even know you needed.

Matt and I have tried to thank people in the moment, share my appreciation and gratitude, post thank yous here on Facebook, and practically shout it from mountain tops if I could. I have said for a long time it takes a village to get through just about anything in this life – but boy do I know this more than ever after this pesky little (not so little) stroke!

I have not publicly thanked each person directly, though give me time and I just might, today’s specific shoutout goes to Josie Wise. I have honestly been pretty resistant in allowing people to bring me food or come over for visits despite the many people whom have offered – but Josie essentially wouldn’t take no for an answer. She bugged my mom until I agreed and did so with the best of intentions in mind, and I am so thankful she did. From her own person experience she knew that despite my resistance, there is something healing in the connection one can only feel by eating a cup of homemade soup and hearing a few kind words. (And frankly she went beyond and brought THREE delicious different soups, crackers, fixings, dessert, and thoughtful cards!)

Yet, more than soup, she also brought a level of empathy, compassion, humor, giggles, and a truck-load of validation that I didn’t know I was hungry for.

To let everyone in on two unique things that I am experiencing post stroke - I have some pretty significant anxiety/PTSD related to what happened as well as this whole file now open in my mind about all the various other ways life could just pull the rug out from under me in the blink of an eye. I also have a hefty case of imposter-syndrome related to the mismatch between how well I am feeling all things considered (so many people have it worse than me) and the outpouring of love I have been shown (whoooo hoooo Team Robyn!!)… sometimes I don’t know/feel if I “deserve” this level of support. It was lovely talking through these beliefs with Josie today, she knows better than most what I am experiencing and gave me the permission to feel my feelings and reminded me over and over that I had a FREAKING STROKE!

Even though I knew it would exhaust me, I forced her to stay and chat for an hour and could have kept talking for hours more! When I walked inside after she left I honestly said to Matt “She is fantastic… I didn’t want her to leave…….. I made a new friend!!!!!!” Josie and I went to high school together, she was several years younger, and it’s likely we have never talked one on one prior to this afternoon. However, she felt compelled to support me in a way only she could and I needed it.

The cool thing is – Josie is just one of the many awesome stories that have come from this damn stroke. I have attracted, cultivated, and maintained some rich relationships in my life over the years – and it is coming back to me tenfold now.

It is pretty wonderful to feel this loved.
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I look well from afar, but I am far from well…

It's been a week since I have written anything – though honestly the time seems relatively arbitrary to me as all I have been doing is laying around – I figured it would be best to give some updates.

First, I want to say that I am so grateful for how well Matt has stepped up during this situation. Like everything in our life together we have turned this into an adventure and it is one that I would never want to be going through with anyone else but him. We have giggle more than cried and it makes all the difference. He has found the perfect balance of caring for me, laughing alongside me, and comforting me though all of this. For those in our life who have stepped up to support him, especially his colleagues at Orangetheory Fitness Eden Prairie and Young Artists Initiative, thank you! They have gone over and above and I am so pleased he is part of your work family. As he transitions back to work this week I am sad to see him go but know he is in great hands with each of you.

I have been trying to find words to describe what it feels like to be in my brain and my body these days. Like most brain injuries and stroke, what I am struggling with is an invisible condition. Thankfully I seem to have made it out of this stroke with any significant neurological or physical deficits, but that does not mean I am ok. Here are some recent ways I have described what I am feeling….
1. A very very very tired human bobble-head version of myself
2. Permanently hung over
3. Like someone who just went on a roller-coaster 34 times back to back and am now trying to walk straight
4. Foozey-oozey
5. The feeling a split second before you faint or pass out
6. Like I am an avatar being piloted by someone else

It is still very early to know when, or perhaps if, these sensations will resolve. I have been doing a TON of research on the type of stroke I had and while the overall prognosis is excellent, almost every single person returns to a pre-stroke functional level, it is also reported in various studies that a third of people after a perimesencephalic nonaneurysmal subarachnoid hemorrhage (PNASAH) report that something still seems off years later. “Something is off” is most commonly described as lingering headaches, increased sensitivities to light or loud noise, irritability, short term memory troubles, migraines, or positional nausea. From what I can gather it seems like they are the same things I am feeling right now, just a little bit more in the background where as they are front and center these days. And those who report that everything did get better it most commonly takes 6 months to get there. Perhaps it is new, or it could be because I am finally having enough downtime to notice it, but I have definitely developed a bit of tinnitus (ringing in the ears) which is concerning and frankly annoying!
Reading those reports and studies last night did make me break down a little. It’s exhausting to think about feeling like this for that long. I do think I am getting 2% better each day, slow and steady. Today felt like a few steps back but progress is not linear! There are honestly moments I forget, where I am sitting here feeling pretty great and think I got this – and I stand up to do the dishes and within 10 minutes I feel awful, dizzy, foggy, and need to go back and lay down. I can’t seem to mind-over-matter this, no matter how much I want to push through it does seem that there is something very real going funny in this brain of mine. My head is spinning and my stomach is turning just from writing this. Even though I try and put it into words, that I am so thankful I still have, nothing seems to do it justice. I have found a few online communities, Facebook pages, and groups where people discuss these same concerns after their own PNASAH. It is as if I am reading words I have felt and others just happen to write down, it’s bonkers how similar their experiences are to mine. There is something very validating in connecting with others in the same invisible place I now live. I still have a long road ahead of not much other than laying around, watching/listening to TV, and the occasional walk around our block! Small goals is the key.

One important thing I remind myself and what I want to share with each of you also comes from the research I have been doing. In this particular kind of stroke it is nearly impossible to ascertain why it happened. There don't seem to be any risk factors, very little commonality between those who it happens to, and almost zero ability to predict it - especially for those where it was truly spontaneous (this kind of stroke is way more common after a trauma or during extreme straining, not many people have it happen out of the blue sitting on their couch doing homework). Like many others it's sort of freaks me out to think I will never know why this happened but I am comforted by the idea that lightning rarely and almost never strikes twice. For as long as they have been tracking data on this particular kind of stroke for the last 30 years roughly 2,000 people each year have a PNASAH – so that equates to be roughly 60,000 people!! In each longitudinal study the medical community can only site ONE case where someone went on to have a second PNASAH, so the odds are extremely low. I am sure its a few more than one but still low nonetheless. I am at no more risk than any of you reading this right now! However, that realization sure doesn't keep my mind from wandering with anxiety and fear, but it helps a little. Im still scared to sneeze but assume someday I wont be.

Thank you for all of the support, love, and donations on my GoFundMe account https://www.gofundme.com/robyns-stroke-recovery. I still have a little ways to go to my goal but bottom line I am overwhelmed by the generosity my village has shown. Each of those messages and $$ is a little piece of permission to take my time and do this recovery process right. I love each of you and promise to get back to the individual text and phone calls soon.

For now I am going to rest up so that I can finish the dishes tonight 10 minutes at a time.
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Raised by 246 people in 5 months
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