Anniversaries

 I'm in pain most of the day in some part of my body. Sometimes I can take a pain reliever and it will go away only to return again at some point later on in the day. It never ends.

I will be having eye muscle surgery towards the end of March. Also around the same time as the 1st anniversary of my multiple brain injuries. I've had some people say really insensitive comments regarding my recovery: Things such as,  'I should just stop being angry or there are people worse off than me. 'I understand all of these things, I was in rehab for three months I saw people who lost both
of their legs and had to use prosthetics, others had strokes in their foreheads and could no longer speak, some were paralyzed from the neck down. I understand I am fortunate to be able to continue the work I was doing prior to when this happened. At the same time, I had four different injuries and have pushed myself to finish things like school or other projects I am working. It's hard enough getting people to understand why I have issues with regulating my emotions now. I've had to correct these people (some family, friends) and remind them of what I'm trying to do is not easy.   I wonder how others would react to experiencing the following: re learn how to walk, stand, swallow, feed yourself and breathe after you've had two brain bleeds ( one intracrainial on the left, another on the right side, an intraparenchymal ) a hemorrhagic stroke and a traumatic brain injury.

I laugh and cry for longer periods than I did before.  I have less patience for people using their car horns just so they can get somewhere quickly. Not to say poor me or anything (I'm usually very good about not doing so ) The entire recovery process has been a struggle.  I have a lot of ptsd and trauma associated and multiple grieving processes with how my body used to work and how things are now.

Besides the issues with my eye I may be at 85% back to where I was before all this began. However, I still regularly have pains behind the muscle in the my eye, inside the iris and nerve ( it's nerve damage and not related to my eye muscle according to the neuro-opthamologist. I feel every time the shunt over-drains in my lower abdomen or at the top of my head. I've become hyper sensitive from everything that has gone on over the last five years. I've also come to the conclusion holding on to some anger will not let this happen again and forgiveness is overrated in certain situations. It's been difficult functioning with only one eye exposed. I've had double vision for 10 months now. Lately, I've been struggling with transportation and having to wear the tape on my glasses.  It will be a year in March.  I have mixed feelings about the 1st anniversary. Grateful to be able to do the work I do, as there were good things which developed out of this horrifying experience.....at the time it makes me both angry and depressed.

My drawings are better than they were before, but my hand writing is different. My had doesn't move the same way it did before...

Eye Surgery Part III

I went to see the neuro-opthamologist again on Monday for a follow up appointment regarding the condition of my right eye. He said the eye muscle has not gotten worse since my brain injuries in March earlier this year. The pain I feel inside the iris and in the nerves and muscles behind and inside the eye is not from the eye getting stronger, it's probably from another injury related to the brainstem stroke I had.

When I saw the ENT specialist he had suggested I could have a condition called TMJ or Temporomanibular Joint Disorder. There are times when my jaw locks and I can't move it, there have also been incidents where I have pain on the right side of my neck underneath my jaw. During the pain episodes I cannot swallow for a minute until the pain goes away. The pain above my jaw is usually followed by a sharp pain inside my right ear. This has been going on for 10 months since I had the brain injuries in March. The jaw incidents are not everyday, they vary. Sometimes happening every day or multiple times a day or going on a few days without having any episodes. I have to go see a specialist regarding this. The TMJ most likely occurred when I had the hemorrhage on my left side which caused the stroke. The stress on my body most likely caused me to grind my teeth which as a result moved my jaw out of place and messed up some nerves in the process.

On Monday I schedule my eye muscle surgery. It will be towards the end of March. Since it's an outpatient procedure, I'll get to go home after the surgery and then see the eye surgeon again the next day for a follow up appointment.

I have to keep the tape on my right glasses lens in the meantime because of the double vision.  I have about 83 days before I get my eye fixed. I've had double vision for a year in March. I don't need to explain why it's a challenge to continue to function with all these issues going on inside my body between nerve issues and overall recovery.  Sometimes it's hard to get some people to understand what the recovery process really means and why it can be really frustrating, joyful and painful all at the same time. I've had to go through multiple grieving processes within my own body of what I can do and what I was able to do a year ago when things were different. For example, my drawings are better than they were before, but my hand writing is different. They way my hand moves when it's writing out words is not the same as it was last year. My hand doesn't move the same way. The hadn writing itself looks the same ( kind of ) . The countdown begins....

Stories and Thin Cameras

This morning I had a very small camera stuck up my nose and down my throat. Since I had multiple brain injuries in March, I've been feeling a sharp pain inside my right ear and underneath my jaw near the salivary gland. There are times when I can't even open my mouth and feels ( for a few seconds) as if my throat is closing. This happens at different times. Sometimes in the evenings, mornings afternoons, or on the rare occasion while I'm eating (which happened a few days ago).  I went to see a throat specialist today where he inserted a camera up my right nostril and down my throat. This hurt quite a bit. Once a spent a few moments with my mouth open and making sounds from my throat he removed the camera. It felt more painful having it pulled out through my nose.  Once it was removed a large tear ran from my right eye. Luckily I had tissues in my bag. I had to take aspirin to help alleviate the pain inside my nose. Even now at 5:28pm my nostril still feels a little sore.  I was told there is nothing wrong with the glands near my throat or anything inside my ear. The pain I feel apparently has something to do with my teeth grinding. I was told I should see a dentist to get fitted for something to wear at night inside my mouth The grinding at night is was is causing the pain inside my throat and ear.

We'll see what the dentist says and if it resolves the issue.

I wasn't grinding my teeth before March.

It only started after the injuries I had on March 6.....

In other news....

I may have mentioned in an earlier post about stories I had while in rehab. I was thinking about them today in order to cheer up my mood:

It was breakfast time ( I think during my second week ) we (the patients) were seated at the two tables in the common/room cafeteria in strapped into our wheelchairs. There was only one aide in the room and she left our breakfast trays on the metal shelves in the middle of the room. She was called away before she started to serve us.  We all sat in our wheelchairs a little after 8am.  She didn't return for 15 minutes. The man seated next to me said, "I guess we have to serve ourselves." His statement made me laugh and still makes me laugh now when I think about it. It's both depressing and funny at the same time.  It was a bit ridiculous, we're all belted to our wheelchairs and no one can go walk across the room to get a tray.  The seat belts were tied behind the wheelchair so there wasn't any way for you to unbuckle yourself.

Then there was the time when I was eating in the common room during breakfast. I had finished and cleaned up my spot at the table (during the first week). The aide told me  I could return to my room. I was used being escorted by an aide who would wheel you back.  I attempted to move the wheelchair using the bars on the side to move it in the direction thought I wanted to go. I left the cafeteria and two feet later got stuck in front of a wall. I couldn't figure out how to turn the wheelchair to the right using the handle bars to get back to my room. I sat there for what seemed like ten minutes ( I think it was five ) Not being able to move the wheelchair made me both depressed and made me laugh. I have a dry sense of humor and I realized while facing the wall in my wheelchair how upsetting it was emotionally not to be able to figure out how to move it where I wanted to go. All I could think about was how the week prior to the brain injuries I was driving a car, walking, etc. and now I was sitting in a wheel chair and couldn't walk, stand or lift my head up all the way. At the time I recognized how ridiculous is was that I couldn't figure out how to move this wheelchair  when previously I had done more complicated things.

Eye Surgery, Part II

I went to an eye glasses office yesterday to see how the prism sticker would work with my glasses and correct the double vision while I wait to have surgery in March. It didn't work. When I'm not wearing my glasses with tape covering the right lens, I see two of everything. When I move my head to the left the two images get closer, then separate. Moving my head to the right causes the two images to move further apart from each other. When I had the prism sticker on my glasses yesterday I could see one image when looking straight ahead. But When I moved my head left or right the images would shift and move just like when I'm not wearing my glasses with one lenses covered.  It was suggested I go see my neuro-opthamologist again to have the prescription split between two lenses. Perhaps the images won't move when my head does. If it doesn't work I'll have to keep the tape on my lens until March when I get my eye muscle corrected.

Two

I've had double vision for eight months. My right eye has been covered since then. First it was with a black patch, now I have a piece of tape covering the right side of my glasses.  With both eyes open I see two of everything.  The images align side by side and the picture in the right eye moves each time I shift my head up or down. When I move my head to the left the images get closer togeth
er. When I move to the right the image get further apart from each other.  See examples below:

Regular vision - what you see everyday and what I saw up until March

What it looks like to have double vision

When I move my head up, the image in the right eye moves with it (up).

When I move my head down so does the image in the right eye.

The images move closer together when I move my head to the left.

Images move further apart when I move my head to the right.

What things looked like wearing the patch on my right. With the tape on my glasses it looks similar to with the patch . More light comes through the tape and I see grey and white instead of black. 

Eye Surgery Part 1

I met with an eye surgeon this afternoon. I was told they don't  do corrective eye surgery on patients until it's a year after they first had their injury. This way it allows enough time to see how much the muscle behind the eye heals on it's own. I have to meet with the neuro-opthamologist I saw over the summer again in December, then meet with the eye surgeon again before I have surgery in March.  There's an 80% chance it will work. They have to warn you about the risks involved, bleeding, etc.  With eye surgery there's the possibility I may have to have additional surgeries in the future.  It's good I haven't lost the use of the muscle behind my eye.

In the meantime, I can get a prescription for a prism lenses sticker to put on my glasses lenses which will allow me to see one image instead of two. I didn't expect to have the eye corrected until sometime next year, as this is what the ophthalmologist had told me over the summer. I wasn't sure if this would be done before the end of the year. The surgeon had explained the reason why they don't rush these surgeries is because sometimes there's an improvement in the eye muscle and then it works too well or too poorly. Therefore, it's best to wait and see what happens. Am I happy about having eye surgery? No. I'm glad it can be corrected and the nerves behind my eye aren't dead. It will be nice to be able to see through both my lenses. I was afraid the surgery would be local anesthesia, where you're awake the entire time. I was told it will be general anesthesia and I won't be in the hospital overnight, I'll be able to go home the same day. Recovery time is something like 3-4 days.

Ears and then some

I had surgery and multiple brain injuries in March, went to rehab for three months ( one month as an inpatient then two months for outpatient therapy ) and was back in school by April.  In August I returned to art which was a struggle cognitively. Since September, I've been interning at a local hospital three days a week and going to classes all day on Saturdays and twice a month on Wednesdays.  Tonight and all day tomorrow I'm taking some time off for myself.....

I can understand why the neurologist I was seeing at Helen Hayes thought I was crazy when I told him I was ready to return to school so soon after all this mess...I have attention issues, I have to really focus and pay attention to certain things. My energy level fluctuates from high to low.  When I have to interact with a variety of people, perform tasks, walking from here to there it take a lot of energy physically and mentally. Technically I'm still in the first year of recovery from a stroke and two brain hemorrhages....

Two months ago I had the hearing in my right ear tested. I could hear a continuous tone, the ear felt full and the sound was diminished. I would also feel a sharp pain inside my ear. I had my hearing tested again this morning and my right ear is almost back to "normal'' I noticed the change recently and wasn't surprised when I heard the news. I no longer hear a tone in my right ear or feel the fullness I had felt before. When people speak, I can hear a slight echo of the voices around me whether it's from the television, or others speaking. Receiving sound inside my right ear is causing me slight pain, i.e. pressing the phone to my right ear. The tonal quality of voices and sounds in the right ear is distorted. Not sure if this will go away. I am suppose to see the ear doctor again in December.  I hope in six weeks I no longer hear and echo in my right ear....

Next thing which needs to be fixed is my eye...I see an eye surgeon at the end of this month...