Month: February 2013

This is a post I am putting directly onto this site. It is not really an essay or blog post.  I just want to share with any potential readers a bit about Mayo Jacksonville and the fact that I am going back for my third visit there in three years.

Lately, (for the last year) my medical mystery du jour has been upper right quadrant pain.  This has    blossomed and grown and now become unmanageable and intense.  I have tried numerous specialists and tests here in Texas hoping to get the issue solved.  At this point, no one in the Austin/San Antonio area can seem to help me and my situation seems to grow worse daily.  So, I have decided call on the doctors at Mayo in Jacksonville.  This is where my “real” doctors are.

Mayo is the only place I know where they put together the whole picture and do not see a patient as little slices.  At Mayo they work up your whole body and consult between specialties to come up with a differential diagnosis.  Because I have several over lapping immune diseases which complicate any kind of diagnostic process, it seems I must have this type of diagnostic approach.  It is frustrating in the extreme.

I am grateful that I have been to the Mayo twice and know what to expect and how to deal with everything but I am also very frustrated that medicine is practiced in such a half assed manner elsewhere.  Without communication and collaboration, differential diagnosis (the process of putting together all the pieces in the puzzle) doesn’t work!

So, here I go again.  I cannot afford to do it and yet I cannot afford to not do it.  My appointment is a month away and it is way too far in the future.  I will call each and every day and ask for a cancellation.  That is what the nice lady in Florida said to do…

I hope she doesn’t get tired of hearing from me.

🙂

Chronic illness is just what it says it is: Chronic.  For those of us who suffer with immune related illnesses we are never sure if tomorrow or the next day will come and let us go relatively unscathed or: Will I have a flare of my connective tissue disease?

Will my Igg infusions make me sick?   Will I get the flu and be on of those “statistical” people that ends up in the hospital?

Do I have a new symptom? Is it real?  Is it connected? Am I going bonkers??

This is our day, our life.

In order to go forward and not be stuck in the quagmire that is our health, we have to move ahead. On this website and in my book, I will point to ways to keep you moving ahead:

1. Get educated about your illness.
2. Become your own best advocate.
3. Learn how to find the best doctors in your area and be vocal about your needs.
4. Find support from others walking the same, lonely path.
5. Learn ways to cope with family and friends who simply don’t understand where you are coming from.
6. Let to fight, fight fight and live, live, live.

This is hard to write about.  Mainly it is hard to write about because I am so damned tired. Typing into the keyboard is making my shoulders hurt and my eyes are burning like hot coals from inside my head.

Fatigue is a quiet enemy.  It sneaks up and wraps itself around you like a boa constrictor.  At first you think you can handle it.  Or, you think maybe you can get it to just drop off.

Or, maybe you can learn to live with it just sort of attached to you at all times but not squeezing you to death.  Like you and the boa constrictor called fatigue can come to a sort of agreement,

“I won’t make a big fuss about the fact you are here if you won’t squeeze me.”

“Yeah.  Sure.  I won’t squeeze. Lean into me; I am more of a brace than a handicap.  I can help you sleep and relax. I’m a good excuse to get out of things you don’t want to do anyway.  Trust me.  I am your friend.”

But inevitably the coils begin to tighten.  It is imperceptible at first.

“Hey. Snake. Stop it.”

“Who? Me?  I’m not doing anything.  You just over did it yesterday.  This is your fault. Not mine.”

Then the soreness and the pain start to set in.  The joints begin to burn and the mind seems sort of sluggish, as though the oxygen were cut off somehow.  Fatigue is more than just being sleepy.  It is like a systemic shut down.  Like someone is dimming the lights and squeezing the life out of you.

“S.N.A.K.E.  You motherfucker: you are killing me. This was your plan all along.  I really wonder what you plan to do with my carcass.  I don’t think you can swallow my fat ass whole! Besides, I am not going to be your kill for the day.I will do whatever it takes to beat you back:  Sleep, meds, infusions, weird foods,Shots every day, no more gluten, never drink alcohol, blah, blah, blah.

But, Snake, you will NOT eat me.

Let go you scaly bastard. I know you will be back for another round but trust me, I will win.

I am not scared of you.  I’m just a little sleepy.

I don’t know what the new normal is. Every time I think I have it ‘under control’ I am wrong.
Lately, I am doing a bit better. I feel like am learning to manage my disease (s) and not let them manage me. Yet still, I end up in the ER or flat on my back needing to sleep through a couple of days, too weak to bathe or get a drink. This feels pretty unacceptable.

The last two weeks were really exciting. My dear friend, Takako, was here from Tokyo. I had not seen her in four years. I planned a five day trip to the beach for the whole family and some other activities. There were some down days planned in and I got my infusion on time. I even took the day after infusion off and rested the whole day at home. I stayed hydrated, (I thought) and slept ten to twelve hours a night. This is sort of a basic formula for someone like me.

But still, the whole thing ended in one mini crash and a big crash. Our last night at the beach I was itching all over and so nauseated that I could not sleep; I knew something was really wrong but tried like hell to just tough it out.

At 1:00 a.m. I knew I had to do something about it because I had a grinding migraine that was just getting worse. I called around the Island (as quietly as I could) to see if there was an Urgent Care center. Nope. The closest thing was the ER at the little town across the ferry. I had to wake my husband and have him take me. He was worried he would not be “up” to drive home the next day so he grudgingly got up and drove me over but slept in the car the entire time I was in there.
It didn’t occur to him that he had already had many more hours sleep than I would ever get. Oh well.
So, I waited and they were pretty nice. I got fluids and Reglan and fell asleep in there. Finally they woke me and told me to call someone to pick me up. I had managed to get dehydrated on the beach even though I had been drinking a lot. Apparently I cannot drink sodas at all. I have to go with straight water and sports drinks… lesson learned.

The next day, my girlfriend drove us back to Austin and my husband slept in the car.
On Monday, I infused. It was a long and tough day and they gave me more meds than usual. I thought I was fine, though.

By Thursday, I was peeing burnt orange and having flank pain. It felt like, WTF?
My sweet friend insisted I go in to ER..

I was fine, just flared and exhausted. I slept all day Friday and am spending the weekend housebound. My husband is doing housework, driving the kids about and trying to understand why I can’t go anywhere. It’s hard for him.
I don’t understand either.
I thought I did all the right things. I am scared now. If this is the new normal, what does that mean? Can I make it to Europe next summer?
Will I ever be myself again?
IS THIS ALL THERE IS?
I have been trying to take all this one day at a time but I am feeling a sense of perspective here that I do not like at all.
I feel like I am staring something in the face that I cannot bluff away. I can talk/write tough but if this is how I am going to be, can I accept it?
Do I have a choice?
Can I somehow rebuild?
Can I pace myself in a more intelligent manner? Can I THINK my way through a set of diseases that don’t behave according to logic?
I guess that is the crux of the matter. There is no logic here and I desperately want some. I am a creative thinker and a flexible one, up to a point. That point has now been crossed. I want a formula for how to live with this shit: If I do A, B and C, I should get a specific result; but I don’t.
I don’t like that.
I don’t like it at all.
I guess I’ll keep reading, keep fighting; keep trying to do better. That is all I know to do.