DAILY LIVING & MOBILITY

Finding the Lessons In Life with Chronic Illness

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Jenny Cynda-Lu

The Time of My Life

I was always active, not necessarily the sports playing type, although I did play as the only girl on the boys ice hockey team in high school...not because I loved the game or even was any good but because a boy told me I couldn't. But I was always doing something, on my bike, rollerblades, exploring etc. When I got out of high school I became an EMT, worked on the ambulance a few days a week, worked part time as an Emergency Room Technician and volunteered as a firefighter....did I mention I also went to college full time?? I LOVED it, I loved the extra training, ice water rescue, high angle rescue, which was rappelling off of a building to get to our "victim" getting them off of their harness, hooked onto ours and then rappelling the rest of the way down with them. My goal was to be a flight medic one day. Things change, I moved and decided I wanted to try my hand at being a police officer, a dream that I had kept to myself most of my life. I was nearly through the hiring process, passed the tests physical and written. Thats when my body started to fall apart. I needed knee surgery and had to withdraw.

Dreams on Hold

In the meantime, I moved back to my hometown and took a job as a dispatcher at a trauma hospital. Soon I would meet and marry my husband who was a soldier at Ft Drum, we would have a daughter and he would have two deployements to Iraq. That put my life on hold, but it was okay because I would raise our daughter and then when she got old enough to where she didn't need me as much I could go back to my dreams. I could get back into EMS or be like the one police officer I knew in Connecticut who waited to join the force until she raised her children.

Getting Sick

Getting sick happened gradually. It wasn't one big disease that took me out. First I was diagnosed with Celiac Disease, then came Rheumatoid Arthritis, Fibromyalgia, REM Sleep Disorder, and on and on, seems like every year something new. Many conditions were conditions that could be triggered by stress, my husband had been injured in the war and had severe PTSD and yes, I was under constant, major stress for years.  I came to realization that my EMS days were over. I won't even try to explain the devastation that came with that. You always think that you are going to have more time, I never thought that by my early 30s my time would be over.

Who am I Now?

I'd spent so long with my identity wrapped up in these roles, EMS, Mother, Wife, Army Family Readiness Group Leader.....I was now stripped of two. Mother and wife weren't all I was but it was all  I had been doing for so long, I held onto my EMS identity because I was going back but now I couldn't, so, who the hell was I now? I spent a lot of time lost, I had never taken that time that most teens and early twenty somethings take to "find" themselves.  Then I discovered MeetUp.com. A website that has all kinds of different groups that get together based on your zip code.  So I decided thats what I was going to do, I was going to try everything from yoga which I already knew I liked to Drum circles, to hiking  to anything that sounded remotely interesting. I didn't have any friends but for one, maybe I'd meet people too. (I also had tried to get a desk job in that time but my health couldn't handle it, it made me worse, which sucked because I LOVED my job). I also found an amazing volunteer gig, I adore animals but I knew I couldn't volunteer at an animal shelter because I'd bring them all home with me. But a wonderful lady let me volunteer at her mini horse farm, helping to groom the horses. Finally, life was looking up, I had hope for my future, it was looking happy.

Two Zebras

I never did get to go to any of the meet up groups and I got to groom the horses just twice. I started losing my peripheral vision and getting horrible headaches. My mom had been having a really weird feeling in her hand and had started falling. On the very same day, April 21, 2016 we were both diagnosed with a rare disease, she was diagnosed with ALS -Amyotrophic Lateral Sclerosis.....100% terminal. I was diagnosed with Idiopathic Intracranial Hypertension, or what used to be known as Pseudotumor, basically my spinal fluid was putting too much pressure on my brain and optic nerves and mimicking a tumor. I needed brain sugery to put in a shunt or I would continue to lose my vision.

On the way home from the ALS clinic one day, while sitting at a red light, we were hit from behind by a driver that was distracted, never saw the line of cars stopped, never slowed down, hit the brakes etc. Hit us at about 40MPH while we were stopped. He actually lifted our car up, went underneath us and it turned into a four car pile up. Thankfully, I wasn't looking in the rear view mirror so I didn't see it coming and because he never hit his brakes we didn't hear it coming so we didn't tense up, not that my mom could have tensed up much at that point. I was looking at her when we were hit, I watched her fold in half around her seatbelt. We were hit so hard that our glasses flew off of our faces. Our injuries were very minor, we were so lucky, but it was a stressor and you know what that does to an already sick body.

The Final Blows

In October I went in for my surgery, I was to stay one night. The night before the surgery I called my Gram to say hi before the surgery, we said "I love you" and hung up the phone. Surgery went well, I was up walking before they expected me to and was turning down morphine in favor of IV Tylenol. I also got my lost vision back, which was not expected. The next morning my husband came to pick me up and he had this look on his face, I knew something was wrong. I teased him, asking if he had gotten a ticket, he is notorious for speeding. He said no and didn't crack a smile, immediately I said my mom and he said no, and then he said the last thing I was expecting to hear "Gram died". The rest is a bit fuzzy, my world fell apart, I pushed him away, I think I almost punched him, a lot of crying and sobbing, but I just remember telling them "I have to go, I have to get to my mom"....the rest of the day was a blur. A couple of weeks later my daughter got pneumonia and ended up in the hospital, my husband who has been struggling with addiction issues for years relapsed and went to rehab and to top it off my daughter brought home lice from school. The surgeon had done such a good job at making sure the spot he shaved could be covered, oh the irony, I had to shave my whole head because the chemicals in the lice treatment were to caustic to use so soon after surgery. 

Then, my Uncle, who had been battling cancer died in December. He was supposed to be getting a treatment to help kick cancers ass but he caught a cold and it gave the cancer the upper hand. He was the best Uncle you could hope for. He would steal my veggies off my plate and eat them for me when my mom wasn't looking.... I was supposed to be fully recovered from my surgery by now but I wasn't, I was SO tired, so exhausted. I was having a lot of dizziness , palpitations, my heart was beating so fast and if I stood too long (more than a minute or so) I would shake. We all thought that it was just a slow recovery and all of the stress.

We Were Wrong

By February I was pretty much bed bound, other than going to visit my mom and go to my doctors appointments. My blood pressure would go as low as 50/34 and my heart rate would go as high as 179. My doctor gave up on trying to find out what was wrong with me and was pretty mad when I refused to let it go, she thought that we should just treat my symptoms. I'm very stubborn but it was because of my stubborness and my love of research and being able to stay grounded and not go from headache to tumor in three clicks of the mouse that I was able to find my own diagnosis and she begrudgingly agreed and I now see an Electrophysiologist. I have Postural Orthotstatic Tachycardia Syndrome. I am part of the 25% that is severly disabled because of it.  No one knows exactly what causes it but there are theories that brain injury and trauma could be one cause. When they put a shunt in your brain they have to drill into your skull and make a spot in your brain for the tubing, so essentially they are causing trauma. So could that be it, who knows? They also don't know who will get better and who won't , some people do get better although they tend to be younger patients, some patients get worse, some get a bit more functional and some just stay the same. There is no one treatment that works for everyone and sometimes none of the treatments work for someone. I've been having luck with a few medicines and saline infusions but I am still bed bound. My headaches from the Intracranial Hypertension have unfortunately gotten worse but my vision is still good to go, the headaches tend to happen with the barometic pressure changes. If you want to know if we are going to have precipitation in the next 24 hours or so, I'm your girl. My mom, she is still with us although I thought we might lose her over the weekend to a really bad cold. Each day we have with her is borrowed time at this point.

I Won't Say That There is Always a Reason But I Will Say

I won't say that things always happen for a reason, I'm not sure that they do. But I will say that when things happen, you can always find a lesson in them if you choose to. Sometimes the pain overwhelms us and we just curl up in a ball and don't want to find a lesson, we don't want to learn anything, we just want to say F the world and lay there and cry. I understand that, I most definitely understand that but that thing that has happened, that has you feeling so defeated, it's happened whether or not you've learned anything from it. I look for the lesson because it's valuable, I might not be able to use what I learn today but in the future I might. In the future maybe I can help someone else with the knowledge that I've gained and if I've done that then that terrible thing I went through has meaning. It wasn't all for nothing, something good came out of the bad. You have three choices when you get knocked down, you can stay down, you can get up and dust yourself off and push forward or you can get up, dust yourself off and reach a hand out to the help the person the was down behind you. It's a choice. The bad stuff is going to happen no matter what choice you make. There are days I feel defeated, days I cry and wonder what the point of it all is, days I feel like I am just existing and then there are days when I get messages or comments on my Instagram telling me that I give them hope, or I made them laugh when they were having a really bad day or thanking me for taking time out to talk to them.  That is when I am reminded what my purpose in this life is. To learn lessons and help others because that in turn helps me.  So to everyone out there struggling, I know it's hard, I know you want to give up sometimes, heck, even most of the time but don't. DO let the bad things define you, but not in a negative way, in a, here is my scar, I showed up, sort of way.

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