a sad one

How on Earth can I go from so happy and so grateful for all I have and then crash. boom. I have been blessed with gratitude throughout this trial, and I have been very aware and appreciative of it.  Sometimes, though, it just becomes a bit much, you could say and I'm in one of those times this weekend.  I have all of these grand plans and all of these things I want (and need) to accomplish and absolutely no energy to do them and when that happens, it can be hard to be able to look ahead into the future and see a reprieve.

I had a huge shoot on Tuesday, it went well but I must have overdone it.  I wanted to get to know more of the Austin wedding vendors so put together this big styled shoot at a friend's amazing modern house. There were a lot of balls in the air for me these past few months planning it and although working with all women (and creatives) tends to lead to a little drama (and it did), I think it went really well.

(one from Tuesday)

The next morning I woke up so sore I could barely walk but quite happy that it was all over and had gone well.  I waddled my way around the island grateful for the gorgeous day and sense of accomplishment.  Thursday passed, no probs. Friday. boom.

I sat in the social security office for 3 hours for a review of my benefits and it has been decided that since I make more than $200 a month from my Intermountain healthcare job (big money, I know) and occasional photography income, I am now too rich to receive part of my benefits.  Social security has been a blessing to me in those months I haven't been well enough to work and I understand many people far sicker than I live across the globe without such a service.  So my income will be a little less than it was, but oh well - I can make it.  Then they tell me since I was so honest on my tax return this year that it is retroactive and I will have to pay them back thousands of dollars for the money they gave me last year... dum dum.  Tears.  The last straw.

I haven't had a good meltdown (the term my family uses for a complete soberest) in such a long time. When I was first ill, oh man - weekly if not more common but now, maybe once every couple of months.  I sat in the car outside social security, listening to the message from the repair shop that my car needs $3,200 of work (it's not even worth that much) and just cried and cried.

Then I went home and took a nap.  And tried to be grateful for the roof over my head and the food I had to eat. I have such a wonderful support system and so many that love and care for me...that is not lost on me for one minute but sometimes it can become a bit much.  Money really isn't the key to happiness, not even close, but sometimes it is nice to have some breathing room and not have to worry about it 24/7.  I have weddings coming, I have my intermountain job, and I still have some social security coming in, and I know things will work out.  So why can't I beat this funk I am in?

There is a chance I could be healed tomorrow and get back to business.  There is a chance this could be the rest of my life (and I have made peace with that) and that is okay too, but that should have no bearing on my overall happiness and contentment.  Today, though, was probably my sickest day in years... I managed to get Charlie down the stairs for a potty break after a few hours but then had to immediately take a nap to recover.  Just got him out one more time and I'm off to bed again.  I'm probably just fighting off a cold (always manifests itself with just much more fatigue) and it will pass and I will get back at it - it just scares me to think that I have crashed to a new, permanent level.  I just wanted to get this written down to look back on one day or to possibly help someone else far sicker than I that feels like this everyday. Bless your hearts.

In the meantime, I'm paddling the river, I'm at the island, I'm staying outdoors.  I'm purposely planned trips this summer to give me things to look forward to.  I've a furry little creature who will literally not take his head off of my chest this weekend and I am grateful for him.  But I am down right now. I'm allowed. And it will all be okay.

grateful

Tonight I am feeling so very, very grateful.  With so much hurt, hate and pain in the World, more than I can barely stand to see, here I sit with a roof over my head, food in my stomach and so much love in my life.  I thank God almighty for His amazing grace and mercy that He sends my way.  My life may not be perfect, yet it is so very very good.  What decent people I have around me to learn from and feel of their love.  What a long way to go though in understanding all the plans and hopes He has in store for me.

It is not lost on me just how very blessed I truly am.

The ass

oh this one is another doozie for the bad doc books.  I really am just a walking medical malpractice suit, aren't I? I'm trying to put it behind me though and stay positive but I'm gonna write this down to keep it for oh, I don't know, posterity.

Update on the nerves....they think they have found which nerve is causing all of the problems.  For a year they have been zapping, frying, blocking and messing with the trigeminal nerve and now they are thinking it is the occipital nerve.  I should thank Dr Stewart, my fatigue guy, actually - it was his suggestion.  They did a nerve block and that helped about 30 percent for a couple of day but at least it was something!! I went back to my pain guy (who will now be dubbed... the ass, as that's the only name I can think to call him) and he suggested we try a radial frequency ablation on the occipital nerve.  Sure, why not, just drug me good this time, that last one hurt like the dickens.

So I show up and I beg the nurse to give me more loopy drugs than the last time.  "We gave you plenty last time," she says.  Nope, no you didn't. In the middle of it while you were heating the nerve for 90 consecutive seconds and I was screaming and you kept saying, 'you won't remember any of this and you have no idea you are in pain', why yes, yes I remember that.  Really, would it kill you just to add a bit more?  We go back and forth and back and forth and it wasn't until I was in there and they were frying more nerves and I was screaming that they indeed went ahead and gave me another little something.  oh their poor pride, how I must have wounded it.

So we zapped nerves.  That evening I thought it might have felt about 40% better!  I was at my aunts house who so graciously drove me and I had a nice dinner and went right to bed. I woke up and 5, well, screaming. Okay, maybe not screaming but definitely writhing in pain.  Why can I never sit still when I am in pain????  Anyway, big massive head going to explode pain.  It wasn't in the spot where they injected me at the base of my neck, it was high forehead area, where I never ever have migraines.  I got up, took an Imitrex (always knocks migraines out), got an icepack, and tried to go back to bed.  After an hour of more dramatic writhing I decided I had better get in the car and drive back to my apartment where I still had some Dilaudid left over from my surgery.  Dilaudid is big business and you had better be in serious pain to take it because it makes you feel so weird and gross that by choosing it you are really only taking the lesser of two evils.  Me driving down the road with an ice pack to my head, moaning and crying with a worried hound dog on my lap must have been quite a site.

I made it home, barely, but the pain had amplified so much by then that I called mom and she gave me the two words she saves for only when she can hear the need in my voice: 'emergency room'.  I opened the apartment door, let the dog in and ran back to the car.  I knew I could call for a ride but I needed to get there now and the thought of being in 20 more minutes of pain while I waited for a ride was nuts.  I made it there in record time and walked in crying and moaning and writhing and they just opened the door right up for me. A nurse had me in a room right away and turned the lights out and sent for the doctor.  They must have been having a slow day because the doc came right in - hey I was in major pain but I wasn't dying here.

We talked, she sent the nurse for supplies to draw blood and then I get, 'are you pregnant?' nope.  not pregnant. not even a slight possibility.  'yes, we hear that a lot but how can you be so sure? we need to do a pregnancy test before I can give you pain meds'. fine.  whatever.  give me the stick I will pee on it and then give me the drugs.  'at this hospital we only do a blood test to determine pregnancy so we will have to draw that and wait about an hour for the lab results to come in.' BUT I AM NOT PREGNANT AND WTF????????????

They gave me some ibuprofen and some anti-nausea stuff in my iv and left me alone to writhe (can I use that word anymore) for an hour or so.  Serious pain always come with serious nausea for some reason.  Then they dramatically came in and announced I wasn't pregnant.  shocker, there.  Then they gave me some stronger pain stuff which knocked about 50 percent of it out but I was still crying at that point. They thought maybe there might be a brain bleed going on from the procedure I had had the day before so they did a cat scan..no prob...those things are so much quicker than MRI's. That came back clear but they said there is a small percentage of brain bleeds that don't show up in cat scans so we needed to do a spinal tap to really rule it out. yuck.  I've had three of those and they are not fun..well, if they can knock you out to do them so you don't feel needles going into your spine and that feeling of them sucking fluid out, it is tolerable.  'No, we don't do that here,' she said, 'you'll be wide awake.'  yuck.  I called a friend from church and she came and held my hand and they did it and I gave me more pain meds and left me to lie flat for a few hours.

So I did. No brain bleed.  Just a freak migraine they said.  I get migraines, they are bad but that wasn't a migraine. I thought Jesus was coming to get me last Saturday.  They said it was probably because of something going wrong with my procedure and I should follow up with the doc (you mean, the ass) who did it. I went home, I slept, I wore my back brace with ice packs, I moved on.

I called the ass' office on Monday to let them know what had happened.  "Okay', said his nurse, 'what is it you would like us to do for you?'.  Hmmm..... thanks for that lady.  We moved my follow up appt a bit sooner and she said we would figure it out Wednesday.  On Wednesday and I waddled my way into his office with my back brace on and they called me back just as usual.  His 25 year old med student/ pa/ whatever came in and asked how the procedure went.  'Uh, you mean you didm' hear?'  No, no she hadn't. She asked a bunch of questions and said it probably wasn't something to worry about and I should come back in a month. ummmmm yeah... where is the doc?  She stepped out to go get him (or so I thought) and came back in and said, 'the doctor says sometimes this procedure makes the pain worse and to not worry about it and come back in a month.'  seriously?  I told her that it helped the nerves a little bit but gave me the headache of all headaches.  'It should be fine.'  I asked her where the doctor was and she said he was really busy (even though I could hear him making small talk in the hallway) and I should just come back in a month.  "maybe try a massage,' she said, 'or have someone rub your head.'  Okay at this point I was just getting mocked so I left, tears flowing, waddling back to my car and wondering how on Earth a doc can put you in ER and not even have the decency to come in and talk to you.

Whatever. It is what it is. I've realized compassion truly is a precious commodity these days and medicine is now just pill mills and procedure after procedure.  I won't be visiting the ass again, to say the least.

Up and down, up and down

It's the cold, right? Is it the cold? Well, it was 80 degrees the other day, but it keeps dipping down in the 20's. I know, I know - such a wimp.  Maybe not the weather?  Who knows the reason, but I am blue!  And I'm usually not, usually I can see around it pretty well these days...I must just getting tired of it all.  It will be 8 years in this year, you would think I would be getting used to it, wouldn't you?

Today, however, marks the one year mark of my big jaw surgery, my big mistake surgery.  I know I needed it - just did I need it that bad?  And that soon?  And with that doctor?  Long story short, it didn't go well.  A year later my jaw hurts a million times worse, my eye droops, and throughout the day it feels like I am getting shocked up down each side of my face - nerve pain, they tell me.  Not the end of the World but it is getting old.

Every pain specialist, every neurologist, every neurosurgeon, every biofeedback specialist are kind of stooped.  The surgeon claims his job was to open me up, put the implants in, and sew me back up - and since he did that, his job was done perfectly.  He claims that he is not a pain specialist and therefore there is nothing more he can offer me - that is the pain doctor's job, now.  Sugarbean, I have been to many of those and no luck so far.  Last week I went in for nerve block #6, with no numbing or drugs this time (he said it wouldn't hurt that bad and they would stop when they hit the skull).  Four pops right above my ear.  It didn't work and made things worse which was quite discouraging but I have never been too confident that they have been finding the exact nerve to numb.  I just keep feeling they are sticking huge rods and needles in my face kind of shooting in the dark.  Oh how much practicing can often go into the actual practice of medicine.  Doctors are not gods, doctors are not gods I keep telling myself.  There definitely is a God, however, and for reasons unbeknownst (sp?) to me, there is a very real reason I need to experience this pain.

I never wanted this blog to just be a big cry fest - that does no one any good so now on to the positive.  I went to see Dr. Stewart today, the chronic illness specialist who has sworn to cure me.  He is a neurosurgeon by trade but got so tired of cutting people up with no success when it came to chronically ill patients that he turned to science, and well, divine intervention.  We chatted for over an hour today, something nearly unheard of these days, and we are going to try some new things.  They have had some breakthroughs with research and as crazy as it sounds, I may be shipping some vials of injectables in from Belgium.  Sounds nuts but I had a really good feeling about it.  Rolling papers might be next, I tell ya.

Anyway, back to the neurosurgeon part.  He could not believe the attempts that have been made by others on my poor little body - all on the wrong nerves, all the wrong ways.  He marched off and came back with with two realllllly long needles.  Both in the back of the skull on each side of my spine.  It actually didn't hurt that bad (trying having them in your cheeks and hitting the back of the skull),   We shall see if it helps, we shall see.  Bottom line...there is always hope, isn't there.  I think hope might be one of my favorite words these days, actually.

getting on, I mean, to my nerves

This entire year has been revolved around my nerves, my actual nerves, that is.  One of the many things that went wrong in my jaw surgery were some nerves were damaged.  Which nerves, that is, we have been trying to figure out all year.  On each side of my face, from the top of my head all the way to under my ear, it feels like I am getting shocked sporadically throughout the day.

My right eye is frozen (well, it droops over my eye) so we know the facial nerve was nicked but most of the pain was thought to come from the trigeminal nerve (if you are really bored, look it up).  Thus  we have done a nerve block on each side, radio frequency ablation (read: fry the nerve for 90 seconds until it crumbles and disappears, and lastly on the 19th, I went in and did something called a balloon rhizotomy.  They took a huge needle, stuck it through my cheek all the way back to the top of my spine and blew up a balloon at the end of it to 'crush nerves'.  An injection, right?  That's what I thought.  Sure, drug me up and inject away!  I came for my pre-op the day before and learned differently.  I guess this procedure has a tendency to slow the heart down to the point where it can often stop altogether (something about a nerve around the area that is connected to the heart) so they had to prepare me for that.  'Don't worry' - they said, 'we'll use the paddles and start it up again.'  Seriously?

One other precaution they took was they did an arterial catheter.  I guess they take a needle and dig it really deep into your artery so they can get drugs even faster into your system than an iv (although they gave me one of those, too).  They said not to worry about it because they would do it after they put me to sleep.  Okie dokie, do your thing boys.  I remember waking up to them taking that thing out and ouch!  I guess they did some pretty deep digging because this was my arm 9 days later!  Looked like beaten addict.

Well, the procedure sure did numb half my face (felt just like coming from the dentist) but sadly, it didn't touch my jaw or the side of my face.  We tried, though!  I was talking to a pain doctor today who thinks it might be the facial nerve that is causing so much pain and not the trigeminal nerve.  'Okay,' I said, 'numb that then.'  I guess that is not possible, there is no access point to it.

I made one more appointment with the original surgeon on Tuesday to give him one more chance to redeem himself and actually put some effort into trying to help me before I talk to a lawyer.  I feel dirty even typing that but a year of hell it has been and if this is permanent - well, I can't even think like that.

That which does not kill us makes us stronger!