Merry Xmas

It's 5 am on Christmas morning. There is snow coming down outside and it is so beautiful to watch. I am in a warm house, food in my belly and very grateful for all I have. I got mom to sleep finally around 3am; yesterday was a doozie but we are hoping for a pain free day today.  Oh, and there is a handsome brown dog sleeping on my feet. Except it's not the handsome brown dog I have loved for 8 years - it's Petey - a shelter dog I rented for the holidays so he doesn't have to spend christmas in a kennel.

Charles Woodrow, my sweet boy who saved me during these last difficult 8 years, became very very ill in October. He was gagging, coughing, gasping for air; we did every test we could think of, spent more money than I had, and the consensus was that it was cancer. I tried and tried to talk myself into the fact that I didn't need to do what I knew I needed to do but in the end, I just couldn't keep him around suffering, for me.  I still wonder if I did the right thing at the right time, if I should have taken out a loan to save him, but it just wasn't what I felt I needed to do. The whole act of killing your dog seems so barbaric, yet as does making him suffer one more second than he had to. It just wasn't fair for him to be in so much pain.

Speaking of pain, what I would give to take my moms pain for her. I have tried to retain hope, tried to see past the reality, but from day one she was diagnosed I knew how this would end and whatever I can do to walk her to God in a more peaceful and pain-free manner, I will do anything to accomplish that. The transplant is off of the plate - her body just can't handle it and frankly, I think she is being spared to agony of it for a reason, it just wouldn't have changed the ending. She lives in a cycle of pain and panic and I pray everyday for patience and empathy to try and help with that. God bless this dear woman.

Life has been tough but I have felt so much love throughout this very trying process. I feel the Savior very close and know that it is a true gift from Him that we have mom with us still today; it is a christmas miracle.

Back again, just a different wonderwoman this time.

Looks like I haven't written since the night before my peaches and cream came. Oh how cannot imagine life without that ball (really fluffly ball) in it. What a little powerhouse of love, light, happiness yet little sleep.  I have no doubt that she was born at the very minute she was needed most. She has been such a ray of sunshine to us.

On to the reason why we needed the sunshine. Soon after she was born, and decided to never sleep again, boss got really sore. Oh, Boss is my mama. She is the least bossy woman on Earth but thus she is dubbed. We were so wrapped up in peach fest that we didn't pay as much attention to it as we should have, and she definitely didn't get to the doctor as soon as she should have. When she went though, idiot md just sent her to physical therapy, instead of ordering an MRI. Her back was in so much pain that she couldn't even lay down. Long story short, she had several fractures in her back due to the cancer that was in her bone marrow, eating away vertebrae.

That was 16 months ago, and she has fought so very hard, all while working full time, to try and put this behind her.  I feel like she has gone through so much more than most cancer patients (and sadly, I am probably wrong about that), so many ups and downs, months and months suffering on chemo that never worked, doctor error (and then some), but SHE IS STILL HERE.  And the only reason that woman is here is because of her gritting her way through HELL. I have seen this woman sicker than I ever thought a person could be and live to tell about it. And to have to watch her in such agony is definitely the hardest thing I have ever had to do.

I will give more details later but we are currently in Salt Lake working on getting her a bone marrow transplant. The last seven days have pushed me to my limits of what I can handle as far as watching her suffer; I will never know what it is like to be her shoes, though. What I would give to be able to take it from her.

I've noticed there have been many times throughout this that I have been impressed to write, just write it out. The roller coaster, the miracles, the fasts, the love, and also the agony. It needs to be documented just what this woman went through to watch her grandbaby grow.

Here I go. This is for boss.

To my peaches and cream

Oh my sweet peaches,

We have been waiting for tomorrow for so very long! Tomorrow is your birthday, the day we will get to meet your sweet face and hold you in our arms.  There is a whole wide World out there for you to conquer and walk your way through.  There is a reason that you are supposed to live your life at this time, people you are supposed to cross paths with, a plan for you that will unfold day by day.

As you find your way, my hope for you is to approach life as an adventure instead of a challenge, an endless list of opportunities instead of fears.  Sure, life will get tough and this World isn't going to get any kinder, but you are up to it, you can do it.  I hope you inherit your mama's ambition and positivity and your daddy's unending kindness, your grandmas' empathy for others and grandpas' steadiness and decency. Try and control on the stubbornness that will no doubt run through your veins, however. Travel the World, it will educate you like nothing else can, and serve others, for every person you come across is there for a reason, and they have lessons to teach you.  Shun self doubt and worry, but walk with your head high and your dreams big.

This time tomorrow, I won't be able to imagine life without you, and I simply cannot wait to smooch those chubby little cheeks.  Welcome to the family, sweet thing.

Love,

Aunt Beef

ps - that brown skinny furry creature is your cousin Charles. He is here to do nothing but love you, snuggle you, and share your fine fabrics with you every chance he can.

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!

Happy NEW Year!

Tonight I am home in bed, sick, yet perfectly at peace.  I am warm, I am fed, I am blessed.  I'm thinking about those in cold who feel so very unloved (why are these people sooo very on my mind these days??) and realize how good I really do have it.  I've never known true hunger, and I've never felt truly alone.

This year has been the make it or break it for me in my new little life - and I think I just might have made it.  I moved to a city where I literally knew not a soul.  My reason?  I simply felt I needed to. Family and friends thought I was nuts, worried that as sick as I was - I would be back home in a month all the wiser.  Not a chance.  I made my rent each month (sometimes with a $1 left to my name after) and took care of my needs.  I made friends, many whom I now can't imagine life without, and transitioned my business to a whole new market.  Not once, not for a single second, have I ever regretted my decision to move and what a feeling that is.

Happy New Year; here's to a chance to make this next one even better.  My resolution?  To simply stop and reflect more, give love, give thanks, turn off the electronic devices and not be afraid to stop and sit still and be perfectly happy in my own skin.

My Christmas Gift

I have truly been given a Christmas gift this year, one of much deepened gratitude.  Every day for the past few weeks I have been reminded how much I have been given and how fortunate I am to have a roof over my head, shelter from the cold and the abundant support I have in my life.  I am truly, truly blessed.  Still ornery, but very blessed :).

Tonight I am thinking about my Savior and what humble means he came to this Earth under, and with that, the life He was able to live and good he was able to do.  I feel grossly inadequate with all i have been given as to whom my life needs to be dedicated to - in every action and deed.  May you all remember the babe in a manger this holiday season.

Merry Christmas!

Grateful

It has been a busy week.  Busy shooting pictures and sleeping every minute in between.  It is cold outside, uncomfortably cold (well, for this southern lady) and as I sit in a warm house with food in my stomach I can't help but think of those who don't have this tonight, those who are suffering and desperately hoping for warmth and love.  I'm thinking of the people without a place to go, homeless animals who are suffering at no fault of their own, everyone and thing who is wishing they had someone to take them in tonight.

In short, tonight I am feeling incredibly blessed.

And if she can do this two minutes before a double mastectomy..

If he can do it..

then i will never be too weak to do something.

Keeping me down

Whenever there is a period of time where I have troubling booking up a season of photographing weddings, I have learned that it is because the Lord will need me to stay down and get extra rest during that time.  It used to terrify me, causing self-doubt concerning my work and the future of my business and should I save face and throw in the towel.  Nope, I am just going to need a break.

This fall was one of those. I tried repeatedly, invested greatly, in trying to secure a few last minute weddings - yet nothing was falling through.  Since I had had such a busy Spring and Summer, I figured I was allowed a little break and moved back to Austin to enjoy life without photoshop for a while.

I popped up to Salt Lake City for pop's 60th bday in blessed Sundance (that place is prozac for me) and before I made it back to Dallas, I popped back into my ob/gyn's office for my annual.  I could tell something was off, the endometriosis was doing something and told the doc about the recent soreness that felt very similar to how I felt just before ovarian cysts have ruptured in the past (by far the worst pain of my life).  She did an ultrasound and sure enough, 4 cm cyst.  This was Thursday at 3:30pm and by 4:45, I was at the surgical surgery pre-registering for my surgery that would be happening the next morning to have it removed.  That surgery is no big deal, not that painful and I would much rather go through that than wait for it to rupture (remember? worst pain ever).  Surgery happened, everything went fine, cyst removed, insides cleaned out, endometriosis deemed 'not horrible but there' and life moved on.  I even cancelled a photo shoot that was supposed to happen the following day, yeah, it wasn't going to happen and I felt absolutely no guilt about it.  Progress.

Four days later, yeah, I broke my foot.  You see a pattern..  I have these huge barstools in my apartment and had my purse resting on one. When I grabbed it, I somehow dragged the barstool down directly on top of my foot.  Wind knocked out of me, I winced and writhed and then tried to just walk it off. As in, walking all over a bumpy field for two days during Austin City Limits.  Yeah, common sense never was my strong point.  Yet, if I could put pressure on it than it couldn't be broken, right?  Wrong.  It got more and more swollen, blacker and bluer, and I headed into the ER for an xray with my head held in shame five days later.  

See.  There were plans for me.  Plans that involved me needing to be free of work for a while.  Plans to stay down and rest.  I have repeatedly learned that if I won't go down willingly, the good Lord will intervene and knock me down.  For good reason, of course.

Today I made pancakes.

Today I made pancakes.  As in, that is all I did.  The whole day.  I had had a busy couple of days, made a quick trip up to Dallas and back, and there really wasn't anything that absolutely had to be done, and man, I was craving pancakes.

I woke up around 11, deliriously exhausted and wondering what on Earth I had been doing for the previous 10 hours while I thought I had been sleeping (running around holding a desk over my head?), forced my head off the pillow and needed.pumpkin.pancakes.

With recipe pulled up on my phone, I walked into the kitchen and just stood.  This happens often, I miss home cooked meals and always have grand plans to cook them but the minute I am in the kitchen, my head starts to spin and I realize I have nowhere near enough energy to pull it off. I then slap peanut butter on a piece of bread and go lie down.

Not today, today was the day of pancakes and if it was the only thing I was going to do, it would be the making of these pancakes (from scratch, I might add).  I did just that, making an enormous mess yet fully enjoying my finished product.  I walked back to bed and collapsed, my day's work done.  I fell back asleep and didn't wake up until after dark.

Some days will just be like this.  And it sucks.  I think about all of the things that can be accomplished in a day, getting hitched, having babies, working, traveling, all that I used to accomplish in a day - running 10 miles, working 12 hours, etc, and I feel guilty for my wasted day of rest.  Many think that bed rest is a dream come true, 'oh the books I could read! the movies I could watch! the sleep I could get!  Actually, it is miserable, lonely and depressing.  After a day in bed, you feel ten times worse about yourself and your life than you ever should - but for that day, all that you needed to accomplish, you did.  Where did we get this notion that if we didn't work ourselves to the bone we didn't earn the right to take a day off?

You just have to let these days happen, and move on - thinking about all the things you can do once you are well, realizing in order for that to happen the bed rest must come first.

I could watch this over and over again

number 81

i gathered the courage to go to the doctor again this week.  I usually go through a period of time every six months where i just can't bring myself to do it - i just can't go on that hypochondriac trial every other week anymore, it's just too degrading.  Yet, when a doctor is so successful it takes nine months to get an appt, you at least schedule one.

As the months went by, I would sometimes think about it but seeing as I have been on the list for an appt for a doctor in Utah since 2010, yes, three years ago - I didn't put much stock in it.  The week before the appt I even considered canceling it, would it be too expensive, a waste of my time, but most of all, would I be able to handle yet another one tell me this was all in my head.  Seeing as I had been feeing especially sick these last few months, I figured what did I have to lose.

I showed up with my trusty binder of medical records and sat in the office, a very nice office I might add.  One after one I noticed autistic children coming and going and from behind the front desk and I could hear a strong texan man tell them he loved them.  Odd, I thought - that is not something you hear a doctor say everyday.  I soon saw the man with the voice, a jolly late fifties crew cut man in scrubs with Dr Stewart embroidered on the chest - yep, that's the guy who supposed to work miracles.

I was called back and hooked up to all of these machines that tested my inner ears when certain sounds were played. Very interesting, I thought - I guess they were measuring the amount they contract when sounds are played, a sign for nervous system function.  Next was standing on platforms that measured my balance, with eyes closed, without eyes closed and finally again with a big piece of foam under me. Hmmm...was I at another quack's?  I was showed into an exam room and this big burly man came right in.  His first words were 'what are you doing in my office when you look so healthy?'  I almost fled the scene right there.  Then he got a big smile on his face and said, "I bet you've heard that before."

The next 90 minutes were kind of a blur.  Yes, he spent an hour and half with me, right in my face, drawing diagrams, explaining this and that and I may not have understood exactly the chemistry of it all I understood one thing.  He.got.it.  He understood completely.  He would ask me the most random questions about my health and he would nail it every time.  Things that I had never thought were related to the fatigue he called out.  And after we talked about how all of this started while I was a missionary in Africa, he then witnessed to me.

Yes, you read that right. In the south, to get 'a witness' from someone is basically to hear a testimony.  And my, my he gave one.  Probably not pc, probably could get him in trouble, but hey, it's his show.  He started out as an ENT and after growing tired of performing sinus surgery after sinus surgery and not really seeing much difference in his patients' health, he moved on to neurosurgery. He was one of the top neurosurgeons in the country for many years and again, after 'cutting people up and shoving pills down their throat', he again grew weary of his chronically ill patients inability to improve.  He said every night he would wake up about 3 am and go into his office to think, and it wasn't long before things just started coming to him and he started to take notes.  He claims he was taught by the Lord. I can believe that.

Years later, he is one of the top autism specialists in the World and also treats a lot of MS, lupus, alzheimers and autoimmune patients.  It's all inflammation of the nervous system, he claims, the brain is running on no fuel.  He looked at all of my records and couldn't believe some of the things previous doctors had missed.  Things that had shown up but docs had discredited with, 'that must be a fluke, don't worry about it,' or 'that's only marginally high'.  He then said he would fix me within a year.  This, I've heard several times and he could read my skepticism and added, 'you the be pessimist, I'll be the optimist.'  He gave me a big hug and promised to call

What's next?  10 tubes of blood drawn on the way home.  I like that he is so proactive with this, 'you've been sick long enough, lets fight this' and daily injections and a few other  supplements, steroids, and vitamins.  His theory: help the body get in a state to where it can heal itself.  He said he will call me next week with the lab results, 'to tell me he was right about just how sick I am' and we'll go from there.

I am skeptical, but there is something telling me to be hopeful. In the last year or so I had pretty much resolved the fact that I would be sick the rest of my life, and I would still have a fulfilling life, and it would be okay.  Now, do I have to though?

back home

I didn't say I would stop writing all together, I just needed to be relieved of the guilt of not writing every day.  The words will come when they come, and when they do, I will write.

Tonight I am feeling such peace and contentment.  I am back in my beloved Austin, after a summer of extreme stress, travel and work; I really should have never left this place.  Everything was unsettling, unfamiliar, somehow just not right.  I traveled to some beautiful places, and I worked really hard and really long hours, but it all felt off, completely wrong.

The whole working in a cubicle staring at numbers thing, another failed experiment. I got sicker by the hour and in turn, got lower and lower.  It was another experiment, a failed one, in attempting to live life with this illness while carrying on a 9-5 job.  doesn't work.

I drove into town last Saturday and immediately could breathe again.  Everything just felt right.  Sure, there are things about life I wish I could change, but where I am at when I am in my beloved new home, is pretty wonderful.

I've got nothing.

For the past few months I have been too busy, overexerting, overspending, over-committing (this is no surprise) but as things are coming to a close, and I am learning the same lesson yet again, I just have nothing to say.  Severe writer's block.  Oh how I wish for the inspiration that was coming so freely a year ago.  And I am sure as not going to get on my soapbox when I am not following my own advice.

I'll be back - not sure when but I'll be back.  Include your email address below and I'll let you know.  Charles and I need to do some resting and maybe get the tank off of the empty line.

this just seems to make it all okay