Walking to Wheeling

If you can't Stand Up, Stand Out!

I don't know what happened...

I was healthy, super active, and was living life until I hit 27 years old. Since then everything has changed. I made a list of it all on the left side and it is listed from where things started and now. I am going to do my best to explain each problem and what is being done to handle it. You should know that none of these medical issues stops me, I still work hard, have fun, love and laugh everyday. 

Migraines are hereditary...

I got my first real migraine in 7th grade math class, it was so scary I can still remember it. I told my teacher I had a headache and was crying Mr. Little (oddly he was 7'2 foot tall) told me I could go out in the hall and lay my head down. Migraines also come on from hormones, welcome to puberty lets make you think you are dying. I watched my mother and grandmother go through these headaches as well. They typically start behind my left eye and then move to my whole head. Any light, sound, or movement will make you vomit... yuck!

The space invader, Glioma Brain Tumor (it invaded the space between my brain and skull)  

I am on my second brain tumor at this point. The first one was found in 2005 when I started fainting, having headaches, and having seizures. I was in Germany and married neither of which made this whole thing easier. I was medically flown to Walter Reed where they did all the testing and my first round of treatments. Later that year I was sent to Ft. Knox to have the brain surgery close to where my family was. (I met Jerry just before surgery and he stuck in there with me) 

Talk about pain, I can't describe it. But after surgery they can't give you pain medication this is because should the brain swell or have problems they won't know if it's your brain or the medication. Possible brain problems you might start seeing things, not being about to speak, and become unresponsive. Medication... seeing things, can't answer questions, and knocked out. It's so similar that they can't give you pain medication so they can keep checking your mental status. I had to stay sitting up (even to sleep) for 3 months because they don't want swelling! When they did lay me down to do a CT scan it was horrible pain... I laid in there screaming. 

This second tumor has been a hassle... The scar tissue from the first isn't helping the situation. Now I am losing my vision, having seizures, uncontrollable nausea and vomiting, and I guess I will own up to it irritability. There is a lot of stress and anxiety to go with it all. 

Shake, Rattle, and Roll

If you have never seen a seizure be thankful because they are scary looking. I had Jerry take a video of me having a seizure since I don't really know what is going on while it is happening. The video was so hard to look at that it made me upset and I deleted it. When the seizures first started I was having 3-4 times a day, now I am having break though every other month or so. I take seizure medication and a birth control shot to help control the seizures. Yup, birth control since hormones can trigger a seizure. I guess I am as hormonal as a 16 year old at prom. 
I have to give a shout out to my University of Kentucky Math class! I had a seizure in class on my way down I smacked my head on my desk and the floor. Once they noticed what was happening they jumped into action. (I didn't see what happened but was told by students, the ambulance, and hospital staff.) They called 911, went outside to flag down help from the fire dept. and ambulance, put a jacket under my head, turned me on my left side, and knew not to put anything in my mouth. I apparently said "I'm going to have a seizure" just before it happened. They did a wonderful job, all those engineers turned into doctors for a day. 

Snot Me

Let's get gross for a minute! To do brain surgery they cut me under my lip, pulled my lip up over my nose, removed my sinus cavities, and drilled into my skill from that direction to get access to my frontal lobe. After surgery they take some fat from your body and rebuild your sinuses. That's where it all went bad for me. I had only been home one day and I sneezed... they tell you not to sneeze how you control that I don't know, anyways when I sneezed out came my new fat patch sinus cavity. Blood went everywhere, my mom picked it up and put it in a plastic bag and off to the hospital we went. The hospital's fix was to shove a hot poker up my nose. Cauterizing smells horrible and it was up my nose... burnt hair, burnt skin, and burnt fat... I can still smell it. And to be totally honest there was no reason to do it!   I still have nose bleeds daily and you wouldn't believe the size of the blood clots that come out. It never healed up and I only get a little air through my nose... making me a mouth breather... oh the snoring I can do will put anyone to shame.

Can someone help me find my inhaler?

It's typically at the very bottom of any bag I am carrying! So now I just sit down and dump my bag all over the ground. Whatever works right! I have asthma and COPD, sometimes I can sorta take a breath and other times I can't get the air out without chocking. I had a Pulmonary Embolism that left scaring to my lungs. The bottom of my lower lobe on the right side is slightly pulled away from my muscle since my diaphragm doesn't work like it use to before the spinal cord injury. (Before anyone needs to ask... I'm not talking birth control... this time, I am talking about the lung muscle) 

"When I touch them, they feel like plastic"

I don't even know where to start with this section since there is so much to say about my spinal cord injury. 
Ugh, I am going to try and make this short... but I know myself enough to know it's not going to be as short as I want it to be. Let's just start when I had the surgery. Sep. 17, 2013 I had back surgery to remove the broke parts around my spinal cord on vertebras T4, T5, and T10. During the surgery the surgeon cut to deep severing part of my spinal cord at T4. 
Hey, what do you know I actually made it short. But having a spinal cord injury changes how you do just about everything. You know what I do the exact same before and after my spinal cord injury ... I sit! Catch the joke there... well I'm laughing even if you aren't. The title of my legs feeling like plastic came from the moment they realized I had a spinal cord injury. I had no clue what was going on... I was medicated out which is a funny story! After surgery they have you do things like move your toes and legs... I couldn't do that so they woke me up and said "Use your hands and rub your legs what does it feel like?" My answer "Plastic, my legs are plastic" that's when they started pinching me and sticking me with needles looking for a response. No response and bruised everywhere. 
I mentioned a funny story, keep in mind after spinal surgery I was on a lot of pain medication mixed with anesthesia. Some friends came to visit and this is what happened. Me; "Oh my gosh do you see that, there is a witch flying around this room" Mom; "There is no witch" Me; " See that door right there" (pointing at the wall) "We are going to go through that door." Lauran; "Where are we going?" Me; "Narnia" I was very serious about Narnia too. 

Autonomic Dysreflexia 

Spinal cord shock... seems easier to explain when I describe it that way this occurs when my body thinks it's going through the spinal cord injury all over again. Anything can cause this type of reaction; shoe tied to tight, not going to the restroom every 2 hours, even something as simple as siting still for to long, or having a hang nail. The results from dysreflexia can be deadly with catastrophic autonomic system failure. 

I kind of lump Dysreflexia into 5 sections. 1st - sweating, dizziness, cold/hot extremes, and anxiety. 2nd - fear/panic, trimmers, headache, and nausea. 3rd - elevated heart rate and/or blood pressure, pain all over, fainting,  sensitivity to light and sound. 4th - unable to control body function, vomiting, seizures, and feeling strong fear of impending death or doom. 5th - Heart attack, stroke, or even death. 

There are ways to combat the dysreflexia but hopefully it never starts. 1 - strip down! 2 - start monitoring heart rate and blood pressure. 3 - go to the restroom (you might want to change 1 and 3 around if in public, if not that's cool too) 4 - change positions in wheelchair or move to another seating option. 5 - check body for; hang nails, sores, scratches, and any abnormalities. 6 - if you find nothing wrong and symptoms aren't getting better seek medical attention. 
I have dysreflexia at least twice a month... in 2014 I had a stroke from it and we never figured out what caused the issue to begin with. I was tracking my blood pressure at the time and before the ambulance could get to me it was well over 200/120... I couldn't speak or move... one of the scariest times in my life. I was lucky Jerry was home, he didn't know what was happening and I couldn't tell him. I was sitting at my desk and was able to write 911 help, but I don't know how he read it as scribbled as it was. Never the less, I am still here.... with my droopy eye and weaker left side. 

Freeze 

Raynaud's disease is a vasospastic problem occurring in; feet, hands, ears, and nose. As the vessels contract and restricting the blood flow the affected area become very cold and painful. The area can turn white, blue, or black. This sometimes occurs naturally when a person is very cold and the body will try to get more blood to your core to keep your organs warm. This can cause you too lose fingers and toes if left untreated. I jump into a hot shower/bath to warm back up. At night I sleep in socks and sometimes gloves. Since I can't feel how cold my feet get I really have to watch them  when I start to get cold. But it gets crazier... these vasospasms can be cause by things other than the cold if you have Raynauds. Stress, trauma, and a number of other things can also trigger vasospasms. 

Vision... Lost in space... the space that my optical nerve should be is constricted. 

I'm such a dork, I'm watching Lost in Space while working on this. Say hello to oblivion! Danger Will Robinson Danger! 

Ok now back to the topic. My vision is decreasing as the brain tumor and scare tissue continues to take up space in my head putting more pressure on my optical nerve. I have really bad tunnel vision and am legally blind... you might see me use a magnifier every once in a while typically I can make do. 

Hypercoagulation / Thrombophilia 

Hypercoagulation or Thrombophilia is a blood disorder that I must take medication for, since the blood inside my body wants to coagulate abnormally. Normal coagulation occurs when your blood hits the air and turns into a semi-solid state so you don't bleed to much. My blood coagulates inside my body causing blood clots to form and become dangerous. Platelets are the cells that help with coagulation, my body makes way to many platelets so blood clots form inside of me. If a blood clot forms in your brain or passes through that is a stroke, if a blood clot forms or pass through your heart that is a heart attack, and if a blood clot forms are passes through your lungs that is called a PE Blood Clot or Pulmonary Embolism. I had a stroke and a PE in 2014, in 2017 I had a heart attack that damaged my anterior wall. I have also had blood clots for in my jugular and pericardium sac. Blood thinner don't always work. 

Leukemia; Essential Thrombocythemia  

ET, is a type of leukemia that can occur at any age. (When I was first diagnosed I thought leukemia only occurred in children) ET is a bone marrow problem that changes the way you body makes cells. My bone marrow is making to many white cells and platelets, so many that it drowns out the ability for your red cells to be made. Without red cells you can not carry air to your organs. They also carry iron, B2, B6, B12, along with Vitamin D and E. I get Chemo, iron, vit B, D, E, and K... sometimes called a banana bag or vit bag. I have to keep a close eye on my blood and bone marrow... and let me tell you that bone marrow aspiration hurts like .... (insert expletive). There is no cure but there is maintenance so as long as I stay on top of everything and don't get sick from having a immune deficiency with the chemo... I will keep keepin' on!