July 21, 2017

All thanks goes to my Doctors and Simon, on this one!

who am iYou are probably sitting there pondering why would I write a blog about the childhood game from our past. Well, easy, it became a vital part of my future.

In my last accident in December 2008, I also suffered from a TBI, traumatic brain injury. Though only a moderate TBI, it was to the front temporal lobe of my brain.

front temporal lobe

Let me give you a little medical background to this first, so then you can understand the rest of this. The front temporal lobe is a component of the cerebral system, which basically directs our behavior. It is the part of the brain that deciphers between good and bad choices, along with recognizing the consequences of those choices. It also triggers irritability, mood swings and an inability to regulate behavior. Another common impairment is memory, both long and short term. An injury to this area of the brain can lead to deficits in anticipation, goal selection, planning, initiation, sequencing, detecting errors and self-correction.  

Now with all that being said, why Simon?

That long lost childhood memory game became my saving grace! Literally!

You see my TBI went unnoticed for over 6 months. It wasn’t until my dad asked one of my doctors “When am I going to get my daughter back?” My doctor looked at him strangely, especially since I was sitting RIGHT NEXT to my dad when he said this. You see, what my dad meant was, the daughter he knew before the accident, is not in the woman sitting next to him. Things are different, a little off, or the easy way to put it “She is not Sue.”

Let me explain the meaning behind my dad’s words. Before my accident, I was always on my toes, I could calculate things in my head, I remembered EVERYTHING (which sucks at times), I never had to write things down, I laughed (a lot), I was a social butterfly. You get the picture. The daughter sitting next to him now was a roller coaster of emotions, couldn’t remember to take medications, let alone remember simple everyday tasks, like flushing a toilet or to brush my teeth. Forget counting money, running errands or going grocery shopping! Can you say NIGHTMARE!?!  I also lost a section of my memory, from about 2001 to 2005. There are a lot of just dead spaces that I just can’t recall. The worst is meeting someone again that I haven’t seen since then and NOT remembering how we met, but knowing I know them. FRUSTRATING!!

So this led my doctor to order some tests, one being an MRI of my brain. Can you believe they never did that the night of my accident after having trauma to my head? Well three days later, my dad received his answer, I had a TBI that has been left untreated, so it was still causing damage. My doctor stated that it would be reversible, but he’s wasn’t sure by how much and it would take me longer, now that I was already delayed in getting diagnosed. So it began, my venture into Cognitive Rehab. I never felt so frustrated and alone than I did during this process.  I had rehab 3 days a week, along with homework I had to do at home, it was just like physical therapy, but only with my brain. The things I was doing, were things children were learning in kindergarten. I felt extremely stupid, in a part of my brain, I knew the answers, but I couldn’t get them out. I was known for my attention to detail, remembering the smallest of facts and details to a case, but now I couldn’t even remember 3 items (written and picture) on a shopping list. This went on for weeks and weeks. This is also when I purchased my first smartphone, talk about a complete lifesaver it turned out to be. I would sit down every morning and set my alarms to go off for every medication (remember at this time I was taking 9 different ones, 24 pills in all for just one day) I had to take and which one I needed to take at that time along with the dosage. Then if I had errands to run, I literally mapped it out and did a task where I could check off as I went. Now why did I have to map it out, well because even though lived in the same city for over 30 years, I couldn’t pin point where locations were anymore, sad but true.

Then I was told by my doctor to download apps and get memory inducing games, like Simon. Well, wouldn’t you know it, once a master at Simon as a child, I failed at miserably now. To the point I chucked the game across my room several times and screamed that it lied!

Simon

Well, now let’s jump ahead one year from that point…I have almost all my short term memory function back, I still am missing gaps of memory throughout that block of years, my emotions have finally even keeled themselves to the point of where I can recognize when I go from one quick extreme to the other and I stop it. Was all this frustrating, hell yeah it was, you feel like you are standing outside your body looking in and wondering where the hell you went to. It’s even more frustrating trying to explain it to people when you couldn’t even understand it yourself. I lost a ton of “so-called” friends throughout this phase in my recovery from my accident, but I also had some amazing ones who would sit with me and try to help me get my memories back of the times I had forgotten about.

You truly never appreciate a part of your body until that part is injured or taken away from you. I am blessed that my TBI was not as severe as it could have been and that I have about 90% of what I damaged, healed. So in the end…yeah, I’ll take it!!! 

Why I Do What I Do!

Have you ever been told “NO”, “NEVER”, “IMPOSSIBLE”, “CAN’T” or “WON”T”?

I HAVE!!! Way too many times in my life and almost every person who has spoken those words to me were doctors. I have learned one thing about doctor’s…it’s not they don’t know what they are doing, it’s just that they only practice medicine, they can’t determine the person’s WILL! My doctor’s soon realized I was a force to be reckoned with. That I wouldn’t let them or anyone else put ANY limitations on my life or my body.

The systems/conditions that my accidents have put on me are as follows:

A dull headache everyday, a migraine at least once a week, 20 surgeries total, loss of range of motion throughout my entire lumbar spine, loss of range of motion in my left hip flexor, numbness in sections of my left leg at all times, left leg going numb after 15-20 mins of standing on it (30 mins if sitting), muscle spasm throughout my back and left leg, constant sharp shooting pain down my left leg, constant dull ache in my lower back, fibromyalgia, chronic pain, PTSD, short term memory loss…

What limitations I allow affect me:

NONE!!

I have had every type of doctor imaginable: orthopedic, neurologist, neurosurgeon, Internist, General, Urologist, Psychologist, Plastic Surgeon (reconstructive), ER Trauma Surgeons, Anesthesiologist, Gastroenterologists, Optometrist, Psychiatrist, Rheumatologist, Infectious Disease Specialist, Physiatrist and Radiologist.

Who do I have now:

NOT A ONE!!

If you have read a previous post of mine about all the prescription medications I was on (Click Here, if you haven’t), then you also know that I no longer take any. My body has become completely immune to any and all medications (including pain meds). I had my last surgery (total hip replacement) without any pain meds.

Now why do I do what I do?

Because I KNOW ME better than anyone else. I know when to rest and I know when to keep going. I know the difference between being SORE from a great workout and being IN PAIN from my injuries.

Because I am a SINGLE MOM. 24/7, 365 days a year. If dinner has to be cook, it’s up to me. If laundry has to be done or the house vacuumed, that’s on me too. If want food in the fridge, clothes for my daughter and a roof over our heads, that also on me.

Pain or no pain, I still have responsibilities and priorities. Just because I have suffered through much, gives me no excuse. If I want to make the best out of my life, why would I give the reins to someone who knows NOTHING about my life?

I have taken control back, I do research on my injuries, I find out how to tweak things to fit me…I say this all the time…”This is MY NEW NORMAL”!

My life without Meds and with Supplements

Having medical issues since I was 18, I have been prescribed tons of different medications to take. The two times I remember taking the most were after my accident in 2000 and then again after my accident in 2008. In 2000, there was a lapse of 14 months were my Doctors could NOT figure out what was wrong me. (I ended up having severe damage done to my lower spine). In this time frame I was put on multiple medications…and at one point in time I was on 9 different (taking 21 pills a day). Two of those medications were BLACK BOXED by the FDA to cause severe/deadly reactions. No one caught this…not my Doctors nor the Pharmacy. I ended up having 3 Gran Mal seizures and adding more issues to the already growing list. After the seizures, my doctors took me off EVERYTHING, which led to me going through 5 days of the worst withdrawal symptoms ever! Then after my accident in 2008, they practically did it all over again (a different group of doctors due to workman’s comp). I was on 11, yes 11 different meds, and NONE OF THEM WERE WORKING. Come to find out my body has grown immune to ALL prescription drugs and I even have to be triple dosed with anesthesia to stay under for a surgery.

So here is a list of all prescription drugs I have been on:

For Pain: (also includes neuro, joint, & arthritic)

Dilaudid 2mg (5mg in hospital), Lyrica 150mg, Aspirin 325mg (4 at a time), Lodine 400mg, Neurontin 600mg, Voltaren Gel, Lidocaine Patch, OxyContin, Vicodin, Percocet, Morphine drip and time release, Darvocet, Mobic, Naproxen, Celebrex & Demerol

For either Muscle Relaxer or Spasms:

Diazepam 5mg, Baclofen 10mg, Flexeril 10mg, & Soma 350mg

For migraines:

Indomethacin 25mg & Imitrex

For Seizures:

Topomax 150mg & Ultram (found out I am allergic too)

Steroid Packs: Prednisone

For Sleep: AmbienCR (was up to taking 6 pills a night with no sleep)

Blood Thinner: Coumidin

So, now I take NONE of those. I even did my last two major surgeries (spinal fusion and total hip replacement) with NO MEDS, that includes NO PAIN MEDS!

Now onto supplements:

Yes, I take them. No, I don’t tell others to take them. To each his own.

Here is what I do take, and below this lit is just some knowledge I have learned by reading.

In the morning I take:

Vitamin D 2,000IU, Super B Complex w/Folic Acid, Multi-Vitamin, CLA,  Glucomannan & Green Tea Extract

At lunch time I take:

CLA, Glucomannan, Green Tea Extract, Ester C 1,000 & FiberSol

Then at dinner:

Ultimate Flora 50Billion, Fish Oil, CLA, Glucomannan, & Green Tea Extract

Then Pre-Workout I take:

L-Arginine 500mg & 1 scoop of EVP (Evogen)

Post-Workout I take:

Glutamine 500mg & 1 scoop of CEllKEM (Evogen)

I have learned that there are different supplements you should NOT take together or should be taken with food. So I am going to touch on that a bit.

Did you know your body absorbs supplements better on a well-balanced diet than with junk (go figure)! Some of the types of supplements that need this are vitamins, minerals, and oils (like fish or flax). There are those supplements, like Amino Acids, Herbal medicines and enzymes, which are better taken 30 minutes PRIOR to eating. As for which ones not to take together and which ones benefit each other. Iron, taken with Vitamin C increases absorption, but taken with Zinc, Soy, Coffee or Tea it decreases the absorption. Calcium, taken with Vitamin D & C, protein and lactose increases absorption, while Magnesium, Zinc and Phosphate decreases it. Don’t combine your Vitamin B12 with Vitamin C either or even better for your woman on oral contraceptives, DON’T take B6 at the same time!

My Challenge

Well, as most know, I am doing a challenge to get my butt back in gear after a terrible 2011 (medically that is).  Let me give you a little bit of a background of what 2011 had for me…I started the year off pretty great…in the gym 5 days a week, but then it came to a halt when I had selective surgery in February, it was a surgery I was looking forward to for over 5 years and one I definitely deserved! Then just when I was able to start back up and moving again and got the OK from my Doc to return to the gym…my back gave. I knew it was serious but with NO insurance, I just suffered through it. I gave up the gym and reverted back to being bed ridden. Finally on Aug 9th, I couldn’t walk and my dad rushed me to the ER, basically for them to just turn me away without doing anything! They thought I was a pain pill shopper (yet I never once asked for a pain prescription…since I am immune to them all!). So my dad brought me home and made a call that changed everything. He called my old Neuro Doc from 10 years ago that did all my 3 previous back surgeries. My dad updated him on my situation (including the on the duty accident), this was Aug 12th…I was given an MRI that day and then told to report to his office first thing Aug 15th. Pushed in a wheelchair, I was told by my Doc to go directly to Cape Hospital for emergency back surgery, I had blown out the 3 discs above my last fusion he did 10 years prior. Again, I was bed ridden for 4 weeks, then slowly started feeling somewhat normal…that was until my left hip started acting up! I had an amazing friend, Amanda, who had a great friend, Edward, that she made a call too. Needless to say he is the TOP joint implant surgeon in the area! He told me to come in Oct 19th to see him…he took one X-Ray and then asked me how I was even walking!! I was schedule that day for a TOTAL LEFT HIP REPLACEMENT on Nov 3rd! He was a little concerned due to just being under anesthesia twice already this year, and also knowing that I have to be doubled dosed with it so I don’t wake up during surgery, but he pressed on! The day of surgery he went over the pain schedule…needless to say I cut him off and told him NOTHING works. He was like, “Are you telling me you are gonna have this surgery WITHOUT ANY PAIN MEDS to help?”…yep that is EXACTLY what I am telling you. He wasn’t sure how to take that. After all, I am only 36…how can I already be immune to all these meds!! Well, surgery was a success…12 hours later he asked if he could try a pain med cocktail with me over the next 12 hours to see if he could try to lessen my pain…I said sure. Well he monitored me closely…and I was alert, not loopy, talking fine and my blood pressure didn’t drop…so then he said I should have basically been dead…the mix he gave could put an elephant down. So he took me off everything and I just suffered through it. Finally on Jan 25th of this year, I got the OK to get back in the gym…and oh boy, did I take that seriously!! I gained 28 pounds over the course of 2011…and my joints can feel it!! So I need to get this extra weight off to get my hip flexors and back/core strong again. It’s my challenge…..

Click here to read MY STORY

PLAN Z

So yesterday I went and started the first series of 3 procedures that my pain management doctor is trying (as I call it PLAN Z) to see if this will take any of my chronic pain away!

I call it PLAN Z…because this is it…there are NO more options left…no other type of procedures…no other kinds of medications….the only other type of things left will be surgeries!! And I am NOT going there…not yet…SURGERY IS NOT AN OPTION…I have had my fair share! At least so far….let’s see I have had 9 in 9 years…I think my body deserves a break. I WILL NOT give in or GIVE UP! I will JUST DEAL! I will deal with the daily pain I am in. I will deal with the CHRONIC PAIN that I am in. Between nerve pain, tingling, numbness, stabbing pain, dullness, sharpness, cramping, joint stiffness…I WILL DEAL!!  As much as I HATE taking all the meds I take…I WILL take them…all 15 pills a day to function!! I will down them everyday!!

So I will go thru this…I will deal with it and see if it works!!! We shall see……