2012 I think its time to move on

This whole blogging thing got put in the burner once school got out of control sorry guys!

January 2012 brought a lot of "poor me" to the table. I counted on my friends, family and angioma alliance family the most and completely lost control of myself emotionally and physically. I mended a relationship with my mother after finding out I have the same type of brain tumors.
 My whole 2012 has been focused on the pain and truth about my genes and forsure learned how to deal with my new reality. My migraines have diminished a ton and I don't feel as physically or emotionally drained all the time. In 2013 I will continue to heal but not so much feel like I can't function on my own. I will continue to bang my brain in biology books for this last semester before I can apply to nursing school. I will take better care of my family and bestfriend-boyfriend, who has done such a great job of keeping me alive in 2012. I will be thankful for everyone and everything God has given me and try not to take advanatge of any opportunity I am given.
We got a second chance to be our little family when the surgeons saved our doggy. Me and Mike realized how much we both depend on our puppy for love and attention as much as he depends on love from us.

 Never say never and remember money comes and goes your family and friends don't :)

Love me and have a happy 2013

Day 2

I don't want to say anything too soon about the outcome of my shots since I've only had it done on one side and it has only been 2 days. However, although I have been very tired the last week I have not had a migraine since the wee hours of Saturday morning. My head was a little achy when I stayed in bed too long this morning but otherwise good report so far. The shots on my left side are done Wednesday so I will be back to report if I get that horrid migraine after the shot and my progress from than on. I'm relieved that I have no numbing or weird feeling from getting my pain receptors burned thus far and have seen some head pain diminish dramatically. Adios until lata gata

Doctors Oh My

However this brings me to my next agenda of hammering a very important thought in your brain. DO NOT TAKE A DOCTORS WORD AS GOLD just because they have MD at the end of their name because EVERYONE makes mistake (yes even you). A have been able to catch a few mistakes since my diagnosis 10 months ago. Today mistake I would have never caught if it weren’t for taking Anatomy and Physiology and just memorizing every damn bone in the human body.  What procedure the pain specialist and I had discussed was not everything she had ordered and when I made the appointments I put my trust in the appointment scheduler that had my paperwork in front of her to make the correct appointment. I had a hunch that she did not do it correctly and called 3 more times to make sure it was changed and  I of course got the “yes ma’am I changed it” answer. When I arrived for my appointment and the nurse repeated to me what I was having done I immediately new RFA (Radiofrequency ablation) on my head had nothing to do with a medial branch block.  You can only imagine how mad this made me knowing someone who doesn’t know medical terms could have just had a procedure that was unnecessary money and pain done to him or her. They were quick to make the changes and I well THEY are lucky the insurance gave them an emergency okay to proceed so I would not have to come back yet again. 

A couple of tips I have is always repeat to your diagnosing doctor what you understand as your diagnosis. Always get a diagnostic paper from your doctor stating your diagnosis with their signature or heading somewhere on the page. Do your research, Mr. Google is a wonderful man in fact I'm sure your significant other will not mind you having an affair with him! The more you understand your diagnosis the more confident you can feel about how to approach and it approach the doctors. Always have a list of you prescriptions with you and I mean anytime, you never know when you will need them.

Radiofrequency Ablation

I promised to post on my journey with getting right and left supraorbital preauricular occipital Radiofrequency ablation. It was very much pain free unlike the test I received a couple weeks ago for this procedure. I was IV sedated this time when I was informed this procedure would be a bit more painful than the last. I was awake through the whole thing and felt poking but no actual pain. It was over in a flash and my boyfriend brought me home feeling very tired. I went to sleep for 3 hours and when I woke up I was still feeling pretty well. If you know me I have a tendency to overdue it sometimes when I’m feeling good. But since I have been feeling awful the last couple days I decided to do NOTHING at all (which was way nice with the way school has been kicking my butt). Around 8 hours post-procedure I started feeling like I had gotten beat up just like when I got the test shot done. I expect this especially since they are only able to do 1 side of the head at a time (I started with my right since that was where my craniotomy was done). I have take a handful of medicine and still no relief which reminded me I promised to update you all… I just read it could like a couple days for this soreness to subside but I remain optimistic.

Injection 1

I wanted to document my recovery and in doing so that brings the bad ugly and good out of me to write it and let it go of it. It also gives people going through the same thing something to relate to. When I first found out all I've done is research and research and search for people who I could relate to. As you know I've had on going problems with severe head pain over the course of this year more so after brain surgery. I have tried over 16 medications from muscle relaxers pain medicine to neuro numbing medicine.. Worst situation is finding out pain medicine can actually give u worse headaches when that is all I have found that works at times when I'm in so much pain I wish to be in a hospital bed with morphine running through my veins.
My neurologist suggested I see a pain specialist that we had run out of options but I felt like that was my very last straw. However it was time to take the leap and after much research and talking with mi familia I decided it could not hurt to try.
First injection today was test to see it a little steroid medicine injection into my occipital and orbital nerves would at least ease my pain for a couple hours. I stuck with the decision NOT to get sedated for 2 reasons. 1 being how would I know if it was working if I'm all foggy and 2 being I have had brain surgery and to me NOTHING gets worse than brain surgery. It stung like a motha occipitally but otherwise I was able to bare the pain. Once I was done my head my tongue and my neck felt numb and I went from a level 4 pain to a 0! Now once the adrenaline of the painful injection wore off I had a little achy headache but otherwise just sick to my stomach from nerves. It's been 4 hours since the shot, she said it would probably only last a couple hours. My head feels like it wants to hurt but it's not allowed. Like my heart beats with my head but no pain with it. The injections sites are starting to become sore but that is also normal and okay to me.
I have decided I will go for the more permanent injection shot in 2 weeks. Wouldn't it be miraculous if I felt like myself again!?!

THIS person THAT person

I have always been outgoing, happy, loving, active person until I found out about my tumor. I let my headaches get the best of me because I knew they weren't just headaches anymore. I let them open my brain so that I wouldn't take the chance of having seizures or continued pain in my head. I wanted to be back to my active happy loving self but instead I'm THIS PERSON! I'm selfish I'm tired I'm cranky as my head hurts to the point where some days I can't even make it out of bed (rare but reality) THIS is the person I never wanted to be. At work we read everyday about people using pain as an excuse just to get money or pain meds and attention. Sometimes I feel like maybe this is what's really happened to me ...until I get that very real very raw pain in my head where I can't get up and if I want to u have to turn to the medicine. I want to be THAT person I used to be where I never let anyone or anything stop me again. But until a doctor addresses my problem and actually wants to help besides telling me this is normal. THIS Is the new me that I dislike and will try everyday to overcome.

Bored

Day 5 of laying on my back still waiting for my spine to stop leaking spinal fluid. I thought today was the day so I woke up laid in the sun then talked myself into well...more like couldn't talk myself out of getting Starbucks. So I ventured to drive myself to Bashes for Starbucks and milk.
Everyone was staring at me and I knew It wasn't because I was glam because I hadn't taken a shower and frankly today I don't give a ish but then I realized they were staring from the black and blue needle marks up and down my arms (no guys I'm not a needle freak) but what do they care if I've been in agony for days they just need something to gossip about so... I was still thriving and my spinal headache just started to kick in so I took advantage and made my way to jack n the box. Call me greedy but my body made sure I knew I screwed up by the time I had to do 60 miles an hour to get home without throwing up in my pretty car.
So I'm back on my back and honestly the Starbucks wasn't even worth it!
I've planned my next manicure, haircut and fall wardrobe thanks to Pinterest now if some day I could get out of bed to actually wear these clothes and get my hair did.
Brings me back to the lecture of maybe this is what got me here in the first place from overdoing it. I need to drill in my own head this is a new me i have to give myself time to be back to the old me previous to brain surgery.