This series of blogs isn’t meant to elicit sympathy but hopefully to inform and create awareness. Thank you in advance for your thoughts.

Well, it’s been 14 weeks since what I’ve come to call ‘the incident’. I finally got in to see the neurologist for my follow-up appointment, mind you, getting the appointment itself was an experience.

The hospital discharge papers said the office of the neurologist would contact me within six weeks, for an appointment. When six weeks came, then seven weeks, I called the neurologist’s office myself. They advised that the call comes from the Stroke Prevention Clinic, and the doctor sees me there. They also advised it could be another 4-6 weeks before I heard from them. If I were making an appointment with the neurologist’s office directly – well they were booking in 2017.

OK, I get it. They have done all of their tests and have a handle on what you’re dealing with, however, I didn’t. I was extremely lucky in that I didn’t need any therapy after leaving the hospital. While that was a good thing, it also left me very much at disadvantage. Those receiving therapy or aftercare of any type, have people who deal with stroke patients all of the time. The patient, or their caregiver if they are incapacitated in any way, are able to ask questions as they arise. I didn’t have that opportunity. I was home alone during the week, with my partner arriving Friday evening and leaving Sunday. I took care of myself, slept a lot, tried to do a bit more each day, and basically let my body heal itself. Impatiently, I might add, but I got there.

A month after I was discharged, I was finally able to focus and retain the information in the spiral bound booklet they gave me on recovery. While it explained some things, like the depression I felt was starting (to be expected in situations like this), it also resulted in questions coming to mind….and no-one to ask for answers. Upon hearing it might be another 4-6 weeks before I got the call, and possibly longer for the appointment itself, I called my family doctor. I’d seen him three weeks after I was discharged but, at that time, my mind really hadn’t gotten to the point where it could think of questions I might have. I figured he’d be able to answer the basics for me…and that’s all I needed right now.

The nurse in his office actually gave me my opening for why I was there. As she accompanied me to an exam room, she asked if I was there to talk to him about the results of my follow-up six week CT scan. Sure! Yeah, that’s why I was there. I made myself comfortable and waited for him to walk in. The conversation went something like this:

Me: “So I understand you have the results of my CT scan.”

Dr: “Yes I do, and things look good. It shows you had stoke.”

Me: “Yup.”

Dr: “It was a bleed.”

Me: “Yup.”

Dr: “It was in the cerebellum.”

Me: “Yup.”

Dr: “The bleed has reduced a bit and the edema is greatly reduced. That’s what they were really concerned with.”

Me: “What’s an edema?”

Dr: “Swelling…of the brain.”

Me: “I had swelling of my brain and no-one bothered to tell me? Could that have caused the stroke?”

Dr: “No. The swelling was a result of the stroke, and it’s pretty much gone. The bleed itself will take quite a while to absorb.”

Well, the edema explained a few things, for me anyway. It explained why, when I first returned home and took a quick step, or turned my head, or attempted to lay down, all on my left side, I was immediately overwhelmed with nausea and would…well, I’d do what you do when you’re extremely nauseous, and I’d do it immediately. It was nice to finally have an answer for this, rather than my visualization of blood sloshing around where it shouldn’t be and causing this to happen. Sorry for the graphic description there but I’m a visual person and that what I pictured happening. I would visualize a puddle on the back of my brain and try to lay down or move so as not to put too many ripples on the puddle…I sure didn’t want waves!

My main question for my doctor was regarding pain medications. I’d been advised to take a specific over-the-counter medication for the arthritic pain in my knees. Could I still do that? If I had a headache, what should I take? I’d gone many weeks without anything, and actually had no knee pain during recovery. I knew I was really getting better when the knee pain returned. My brain had stopped having to focus totally on its own repair, and could focus on other areas of interest.

I was advised to stop any over the counter pain medication other than Tylenol products. For my specific type of stroke, a bleed, they didn’t want to me ever take anything that could thin my blood. Most times they want you taking Aspirin etc., specifically because it thins blood and allows it to move past partial blockages etc. In my case, they didn’t want a bleed to run more freely, should this happen again.

Well, I try to keep my posting time to half-an-hour so, the visit to the neurologist will have to wait until next time. Hey, I had to wait…you can too!

This series of blogs isn’t meant to elicit sympathy but hopefully to inform and create awareness. Thank you in advance for your thoughts.

I haven’t blogged in a while because, well, I’ve been healing. I’m back to work three mornings a week, up from two, and hoping to add more days as I move along. I am finding that the days I work in the morning, I’m pretty wiped for the rest of the day. The next day, I tend to sleep in late and not have much ambition. It’s frustrating for someone like me whose feet normally hits the floor by 7am, on my days off, and who is on the go from that moment until my head hits the pillow around 10 or 11pm.

I still haven’t had my follow-up appointment with the neurologist, even though the discharge papers from the hospital advised her office would be in touch within six weeks. Because I have no patience, when six weeks came and went, I called the office of the neurologist. It turns out the appointment isn’t made by her office, it’s through the stroke clinic, and they call me, although she sees me there.

As I’ve mentioned, I’m somewhat unique in that I didn’t need any after care, and as a result, I haven’t seen therapists and such who might be able to answer questions that have come up. My main questions were what could, or couldn’t, I take for headaches and for the arthritic pain in my knees. I’d had to postpone the scheduled replacement of my right knee due to the stroke and recent damp weather was not treating me very well. I’d continued to ‘grin and bear it’ but, not knowing when I’d see the neurologist, I really just wanted some direction. So, me being me, I made an appointment with my family doctor. I knew he had at least two reports from the multiple doctors I saw, or who saw me, while I was in the hospital, so it was my hope that he’d be able to answer these basic questions for me.

I arrived at my appointment, with my list of questions and Post-it notes stuck throughout the book on strokes the hospital had sent me home with . Nice of them to send the book but it took me over a month to even open it as my eyes couldn’t focus enough, and when they did, my brain didn’t want to retain the information. My doctor’s nurse mentioned he had the results of my last CT scan, so that’s what I opened the conversation with. He said it showed I had a stroke (yup), it was a bleed (yup), in the cerebellum section of my brain (yup) and there was also a brain edema (what?). Turns out, when the stroke happened, the trauma caused swelling on my brain. Gee….it would have been nice if someone had told me. This could have been why I had immediate and overwhelming nausea my first few weeks home when I made any movements to the left. The CT scan showed that the swelling had reduced greatly, this was done six weeks after I was released from the hospital, but there was still a fair bit of blood pooled from the bleed. I guess this takes quite some time to be reabsorbed but the swelling was what they were most concerned about. Uh…yeah! Me too!

Those who know me know I’ll be having quite the discussion with the neurologist, when I finally get to see her. I saw her in the hospital for a few minutes, but I spoke more with the other three doctors who took care of me than I did her. On the day she saw me, I believe it was the day I was released, she only spoke with me for a couple of minutes; basically to say she saw the MRI and MRA and I would be going home when the other doctor had completed the paperwork. Ah yes, the paperwork. I’ll be talking to her about that. The paperwork advised I would hear from her office within six weeks, as mentioned, it’s not her office that contacts me, nor is it within six weeks. We are now on Week 9, and still no call. Really, let’s be more realistic with the information provided!

I’ll also be asking her about the nystagmus. This is a symptom I had from the stroke, one that has never been told to me. The doctor who had me admitted showed the nurse how my eyes were rapidly moving from side to side. I paid attention and then did the research myself on what it was. I have not idea if I still have some of the nystagmus, although my vision is much better than it was in hospital. Nor do I know if I should have my eyes retested, or go with the prescription I’d received in May but hadn’t had filled yet.

We have amazing health care in Canada, compared to a lot of countries, but it is being stretched to its limits. A patient shouldn’t have to do their own research and look for their own answer; they shouldn’t have to wait months for follow-ups with a specialist. Nine weeks and that’s still waiting for the phone call, not the appointment itself!

I’m truly thankful my stroke wasn’t worse and that I didn’t need any after care, but the fact it wasn’t has left me extremely frustrated with finding my own answers and understanding my own healing process.

This series of blogs isn’t meant to elicit sympathy but hopefully to inform and create awareness. Thank you in advance for your thoughts.

This next part are my own personal suggestions from my own personal experience. 

When you have a stroke your abilities, can and will, change. I was extremely lucky in that only my balance and vision were affected. Balance came back pretty quickly, but vision continues to be an issue. As I told the numerous doctors I saw during my stay in the hospital, it was like my eyes were fighting with each other to focus on anything. I could see things in the distance clearly, but things around what I was focusing on, or things closer to me, were difficult to focus on.

This remains an issue, although it should get better as my brain rewires itself. My true topic here is how to assist those who’ve had a stroke, when they return home. People do not like to lose their independence and, since I live alone most of the time, I was concerned others would be asked to adjust their lives to take care of me. Again, I was lucky in that this was not the case, but some short term accommodations did need to be made.

Standing for a long time or bending over was, and still is sometimes, an issue. I quickly found out that turning to the left, or laying down on my left side (the bleed was in the back left section of my brain), caused me to become instantly and overwhelmingly nauseous and it wasn’t a matter of when I was going to be sick, but how quickly I could get to the bucket. I soon learned not to do this and things got a lot better.

My suggestions; when someone you know has a stroke and is ready to return home, speak to them, speak to their doctors, speak to whomever you can, and find out their limitations. I didn’t have many. That along with my own stubborn nature, probably made people think I could do a lot more than I really could.

Things that are needed and/or greatly appreciated; prepared meals set high in the fridge so that the ‘patient’ can reheat them for themselves, but not have to bend to do so; food that doesn’t have to be cooked is also a wonderful thing ( I found Lunchmates a great idea). Lots of fresh fruit around that can be grabbed for a quick snack. Bottles of juice, Gatorade, water or whatever in the fridge so that the ‘patient’ keeps hydrated. Dropping by to do even mundane things like chat, or just sitting with them, wash up the dishes, pull weeds from the garden or, if they are able – to take them for a drive (four walls close in quickly), although I seem to spend an awful lot of time sleeping these days. Think of the patient’s personality, are there things falling by the wayside that might stress them if they saw how they looked now? I hadn’t been in my backyard for a month after my stroke, simply because I knew how overrun it would be and bending over was still a balance issue. I knew I’d want to pull weeds and clean up the gardens and not being able to would stress me out, so I simply avoided it.

If they don’t live alone, just spend time with them and allow whomever is caring for them some time for themselves. If the patient can be left alone for a while, take their caretaker out for a drive, lunch, whatever….give them some time away from care taking.

I’m now trying to do the dishes at least once a day, although the damn things can dry themselves. I’ve been in the backyard once, and picked a slew of tomatoes, lots more will be rotten by the time I get out there again but I hope to go out tomorrow with my daughter and get her to help me trim them back, and we’ll pick what we can. I’m not going to worry about it looking perfect (believe me…that’s a HUGE step for me).

The main thing when someone has a stroke, don’t assume anything. Don’t assume they can’t do anything, or they can do everything. Talk to them, and REALLY listen. I’ve always been bad for say, “Oh sure, I can take care of that.” Even when I know I’ll struggle. I have learned that, while I may still be able to do it, there is nothing wrong with asking for help. I listen to my body more, and my brain, and make sure not to push myself further than I should. I’ve had more than my share of lectures in the last month. I’ve heard you people….and I’m listening!

This series of blogs isn’t meant to elicit sympathy but hopefully to inform and create awareness. Thank you in advance for your thoughts.

I generally don’t put truly person information on things like Facebook. Why? Because they are exactly that personal. You will never see my relationship status, as I choose to keep that personal. Those who need to know, know. I also don’t tend to put anything to do with my health. Again, personal. However, a recent question regarding a post I did make resulted in me advising people on Facebook about my stroke. Part of the reason I don’t post things like this there, is because I’m not looking for an outpouring of sympathy and I am certainly not playing the “poor me” card. I take what life throws at me and push my way through it, which can be detrimental in some ways.

I’ve had people make comments regarding how I look since the stroke (for those who haven’t seen me – I look and act the same as before). This being said, because I don’t look like anything happened to me, it’s hard for others to comprehend how it affects your brain. For me, my vision is the big thing. No, I’m visually impaired or anything, but the neurological  pathways are still rebuilding themselves and my eyes struggle to focus sometimes. Reading, and things close up, are still an issue. Driving, or sitting in a group of people and trying to focus on different faces, also an issue. Sure, I can do both, but it’s tiring and, while I don’t get a headache from it anymore, I can certainly feel the strain as my eyes work to do what they did naturally just four weeks ago.

When I left the hospital, they gave me an information package on stroke recovery. Four weeks later and I’m just starting to read through it because again, I’m unique. The majority of the information in this package doesn’t apply to me. I was advised I needed no rehab in any way, and it’s just a matter of time to allow the pathways to repair themselves. This is why I’m trying to blog every couple of days, to help my eyes relearn those pathways.

Part of the package lists signs of a stroke;

Weakness – Sudden loss of strength or sudden numbness in the face, arm or leg, even if temporary.

Trouble speaking – Sudden difficulty speaking or understanding or sudden confusion, even if temporary.

Vision problems – Sudden trouble with vision, even if temporary.

Headache – Sudden severe and unusual headache.

Dizziness – Sudden loss of balance, especially with any of the above signs.

OK, so here’s where it gets tricky; I had dizziness, headache and vision problems, but it was all put down to vertigo (which I’ve had before with an inner ear infection). My previous vertigo only lasted a day or so but I know people who have a version that lasts days, so I figured I’d moved on to that type. I was assessed with an inner ear infection – I’ll be looking into that assessment further as I get through my healing -so a stroke was the furthest thing from my mind.

My first post on this issue advised that I believe the stroke happened on July 25th. I’d have the dizziness, nausea and headache, for 11 days by this time, and it had been assumed it was all due to the vertigo. The afternoon of the July 25th I had been given a prescription provided to those with Persistent Onset Vertigo and I was waiting for that to kick in. This  is when the ongoing nausea became suddenly overwhelming and I actually did get sick. Then, no more nausea. I was still off balance, dizzy and had the headache.

To those not familiar with vertigo; https://en.wikipedia.org/wiki/Vertigo

This series of blogs isn’t meant to elicit sympathy but hopefully to inform and create awareness. Thank you in advance for your thoughts.

I realize I’ve made light of a very serious situation, having a stroke, but those who know me know that I’ve had a lot of difficult issues to deal with through my life and humour is a part of how I’ve made it through. To be honest, laying in that hospital bed in ER all alone, (as I mentioned in an earlier post I’d sent my partner home to get some rest), and having the doctor AND a nurse come in, I knew it wouldn’t be good news. Having the doctor say, “I wasn’t expecting to find this.” Then go on to say it may be a tumour, was scary as all hell, but I can’t, don’t and won’t dwell on the bad, I always look for the positive or the next step to make it through. I was extremely thankful when the second CT scan confirmed stroke, and not tumour, as I knew the worst was over and it was now about healing.

I ended up staying in the hospital for a total of  five days. As mentioned previously, I was extremely lucky and didn’t need any modifications to my home or aftercare once leaving the hospital. As the nurse said when I was signing the discharge papers, “If you drove yourself here, you are fine to drive yourself home.” Rest assured folks, I’ve only driven a couple of times since leaving the hospital on August 3rd and I’ve learned, and am paying attention to, my limits….as frustrating as that may be some days!

When I spoke to the doctor the morning of my discharge, I asked if I had any restrictions. He had learned my sense of humour by this time and said, “No real restrictions, just listen to your body, allow it time to heal and no contact sports.” My immediate response, “Damn, there goes my Thursday night football game!” He quickly responded with, “No roller derbies either!”

My best girlfriend had come to town the day before and we’d arranged for her to pick me out when I got my release papers. This being said, I went from laying around in a hospital bed most of the day, to laying around on my sofa most of the day. However, at least I was in my own home and starting that road to recovery.

I hope to be back on here later today, or tomorrow with some more serious information; signs to look for and a bit of helpful insight into what you can do for a friend or family member when they’ve been through this and have returned home. For now, it’s nap time!

This series of blogs isn’t meant to elicit sympathy but hopefully to inform and create awareness. I do however, thank you in advance for your thoughts.

Well, it’s been almost two months since my last post and a lot of things have happened. A lot. This particular topic will be done in multiple posts, and for those who don’t already know what has been doing on, you’ll understand why shortly.

I’m someone who believes in going for their physical every other year (no health issues so yearly isn’t called for), and went for mine as scheduled July 8th. Being of a certain age, I always book an appointment for two weeks after my physical. I want to know, and track, “the numbers”. I figure if they find a problem, I want to know and address it right away. There are a lot of issues in my family; blood pressure, diabetes, hypoglycemia, etc., so I track my numbers to make sure things are good. Personally, my blood pressure has always been textbook; blood sugar – amazing; cholesterol – generally that of an 18-year old but up .3 this year. Anyway, I had the appointment for my follow-up booked for July 22nd. On July 15th, I had an odd feeling in my head – for those who feel air pressure changes, you’ll know what I mean. I put it down to that. The next morning I woke up with vertigo. Not a feeling you want to have, but I’ve had it before due to ear infections etc. It generally lasts a day and I’m good. Not this time. When I wasn’t over the vertigo by Tuesday, I called my doctor. Unfortunately, he was going on vacation the next week and he was fully booked. They said they’d put me down and call if there was a cancellation. I’m not going to go into all of the detail but, after two visits to a different doctor, things still weren’t improving.

On Monday, July 25th while standing at my kitchen sink I had a mild stroke. I believe this is when it happened anyway. Given the symptoms (which I’ve now researched some) and how I remember feeling, I’m pretty sure this is when it happened. Vertigo will give you a headache and nausea – due to the constant spinning of everything – but at this time I had an overwhelming feeling of nausea, and actually threw up.

Not even thinking ‘stroke’, I figured the worst was over. I was taking the meds the doctor gave me and had advised needed two days to take effect, so I figured I’d give the meds their time. After 48 hours I still didn’t feel any better and was contemplating taking a cab to Emergency the next morning. My sister had offered to drive 2 hour to take me but yeah, I’m stubborn, I didn’t want to put her out, and really didn’t want to sit in Emergency by myself for hours on end so I figured I’d wait one more day until my partner was here and have him take me. He works out of town and is here on weekends.

As luck would have it, he got off work early that day so when he arrived we immediately headed to the hospital. We arrived at 2pm and started, “THE WAIT”. During our four hours of waiting, he made sure I drank an energy drink, as I know I hadn’t been drinking enough fluids over the past two weeks. He also got some chicken soup for me and, when chatting with a woman who came in by herself, after us, expressed his concern and asked he if she was OK. (She’d basically curled up in a ball in the chair due to pain from a gallbladder removal she’d had numerous issues with). She was surprised a stranger would express concern, but that’s just how how he is. Me, I was sitting with my eyes shut most of the time, trying to keep the world from spinning.

When we finally got in to see the doctor, I was sent for a CT Scan. The initial diagnosis….possible brain tumour. These were my actually thoughts. “OMG! Really! Now you have to go in, do a biopsy and figure out what it is, before we even think treatment!” I also thought, “He didn’t sign up for this.” My partner and I have only been together for four months at his point. I’d send him home earlier, to just get a break and he wasn’t there when the doctor and nurse came in to tell me. Yes, I was alone when I got this news.

When he returned and I told him they thought it might be a tumour, he didn’t bat an eye. I was headed for another CT Scan, this one with a dye added to show the veins and make a clear diagnosis. The initial scan showed a 2cm area they were concerned with (possible tumour). When I got back from this scan, and they got the results, it was determined I had a stroke, a bleed in the cerebellum, the area that deals with balance and vision. Both my partner and I had the same response, “Good..now we just deal with the recovery”. They advised I was being admitted, so I sent my partner home to get some rest as I figured one of us might as well get some.

These are the hospital bracelets from my “adventure”. One red one is from Emergency, they put a different one on you when you are admitted, with a different bar code; and the yellow one advises they needed to watch me as I may fall. The nurse told us if it has stripes as well, you may be violent. The picture is out of focus for a couple of reasons; to keep my information private, and to show how I currently see a lot of things when not wearing my glasses. OK, so my vision may not be quite this bad. But it’s the best I could focus my phone camera, when not wearing my glasses.

This is the end of this post. I’ll continue tomorrow. I’m trying to get on the computer a bit each day, to help things heal, and my head is telling me I’ve done enough for today.