I am so so sleepy tonight that I almost just fell asleep without writing anything! I would have been so angry with myself! Even if all I write is a sentence or two. This is important to me. I feel like I’m writing a book or its my baby or something. And, I must admit, it’s for purely selfish reasons. I think this is super therapeutic and it is making me feel more sane. So, even if I’m the only person that this ever helps, well, my job is done. Inspiring others and having readers are nice, but at the end of the day, I know that it was time for me to do something, something for myself.  I’ve been on a downwards spiral for some time now and I had to find some way to fix it. All the pills in the world aren’t going to heal my soul…
When you live with pain it is very very easy to become hopeless. Especially when even the Dr’s feel that way. We have this preconceived notion that the Dr’s will “fix it” and then we will be fine. But, when it can’t be fixed? Where’s your solution? What’s the solution?
I feel like it’s been this damn waiting game. Waiting for the Dr., see the Dr and tried numerous things, but nothing helped. Okay, now we’re waiting for the “specialist” the neurologist. Waiting waiting and then okay Neurologist plays around with some different meds. None of them helped. Neurologist refers you to the Neurosurgeon.
Waiting, waiting, waiting…Neurosurgeon checks you out, gives you options, can’t decide right then and there, because you have to look at all of the risks. There are some major major risks when someone is going to cut into your brain.  This surgery is called an “elective surgery”. (Because the other option was to continue to live in bed, in pain, for more than 80% of the time – big choice!!) So, elective brain surgery. Guess what this means??? Not an emergency, life or death surgery. So, of course, more waiting and waiting and waiting and calling the Dr’s nurse crying, but told I’m sorry you’ll still have to wait, more waiting and waiting. Lots and lots of times to consider all of the horrible things that could go wrong with this surgery, but at this point I’m hardly hanging on. Waiting and yay, finally it’s time (who knew I’d be so relieved and looking forward to brain surgery???  But, when it’s bad, I’m pretty open to trying anything to get the pain to stop…
Brain surgery. Awful awful care at the NICU…pain and pain and pain (strange how the desire to erase the pain from my face kept me from thinking about the actual pain that I’d experience, the surgical pain…)Can hardly turn my head, can only sleep on one side (was used to falling asleep on an ice pack on the sore side). Oh right, he actually had to shave part of my head and he had to cut through muscle and up under and through bone…why did I not realize that when I woke up and the freezing wore off I would be in horrible pain!!! I mean “hello Jenn, this surgeon is cutting into your BRAIN!!! It might be a tad sore afterwards!!! Duuh!!!” But, on a more positive side, right after the surgery, I wake up and, yay! I woke up (surgeon told us 1-2 people out of 100 die from this surgery!!) And, yay! I know who I am and I know my mom and dad and sister. I know my husband and my beautiful kids. I have not had a stroke, I can still hear, I can see and I have sensation on my face still, so no permanent numbness. Yay. Have to be living to feel pain right??
And then I get to go home (well, to mom and dad’s) and wait some more, until I’m up to going home. Then we all slowly discover that, I’m still in pain. I mean, my face is still in pain, now I just have all of the surgical pain as well. And, as the surgical pain slowly heals, the face pain, sadly and frustratingly remains…gradually gets worse. Huh! Really, after all of that I’m back in the waiting game! Seriously!!! Feel so so much anger. I knew it wasn’t guaranteed to be a success, but I was at a place where I just could not function at all.  Really really put all of my eggs in that one basket, yep. And the bottom of the basket just fell out!!  So, back to waiting.
Waiting to heal. Dr has to pull the staples out of my head and she apologetically explains that there is no nice way to do this. It will hurt and it will have to be one at a time…ouch!!!! Try to go back to normal, bit better than before the surgery. Super tired and slow from healing but not in bed as much. Is a bit better. But is not gone…continue with the meds. Dr wants Neurosurgeon’s opinion. Okay so (he actually made my Dr write a whole new referral to him. As if I’m a new patient…not someone who’s brain he already cut into!!!  And so we wait and we wait and we wait. Finally see him and he tells us I’m going to be in pain for life…can do numbing surgeries, but doesn’t recommend them in my case but, guess what, they are “elective”, so I can choose if I want to or not. Tells us that I should go to pain clinic again, because “you will be in pain always and need to learn to live with it.” It’s only a 1 -1.5 year waiting list! (Key word there was… WAITING!!!!!)
New Dr referrals. We wait and we wait and we wait. New neurologist adds meds, make me ill ill ill. Okay. Stop taking them. We will just have to see what next Dr says…so guess what we’re doing, currently? Here’s a hint, it’s all we do…Yet Again???  Waiting…
WAITING!! Waiting for pain specialist Dr now. And here we are. Appointment at the end of February…so we are waiting and waiting and waiting…I just sit around in pain waiting.
So, yes, wow! I admit that turned into a way off and crazy ramble, but I’m tired of waiting. Waiting for someone to know how to fix this…

So, now I’m writing while waiting and writing and waiting…I’ll deal with the soul healing myself thanx. I’ve had it with all of this waiting around for someone to fix me crap!!  So so done…

Yikes. I need to go to bed. This unintentionally became super negative! But it sure feels good to just say it!! To let some of it out. To admit that, perhaps I’m not okay.
And now, I’m off to bed. If you want more then you can join me with my favourite pastime – yep, you got it, you’ll just have to wait!! Lol (oh and let me know if you need assistance, I’ve become quite the professional at waiting. I should be making money I’m so good at it!! Maybe I should teach a class!!!)

Can hardly hold my eyes open…💤💤💤💤💤💤💤

Hopefully one day I’ll get it right, or at least have fun, while about it I write!