Tuesday, August 5, 2008

When The Going Gets Tough the Tough Curl into a Fetal Position

Well, that pretty much sums it up.
It has been sheer hell. I am in over my head. I am wondering what I am doing. I am going to Vail for more surgeries. Yes, MORE! The fun never stops. 
Despite being given SSI from the federal government for my chronic medical condition (including osteonecrosis). My disability insurance company, despite having a slew of MRI test results, recommendations for surgeries, has  suggested that I  my disability would be terminated. The implication was, if I can ride a bike for 10 mins I should be able to work. Frankly, there are moments that I would rather have my legs chopped off, so I could have wheels instead. Really! I hate getting out of bed, sitting, walking, and getting up and down

All of it is a painful mess, consolidated in one body, at the same time. There are times I just wished to disappear rather than stand and fight for my rights and dignity. Hence..... curling up into a fetal ball is sometimes all I can do/want to do. There sis no rest for the wicked. As soon as you win one battle another bigger one looms, and frankly (to use the word I learned from my wonderful boss Carline) there are times I have nothing left. I am supposed to be taking care of my body and mind. It has become, so often, a burden to achieve. The mental and emotional energy to justifying my medical stuff, often takes precedent.

I am disappointed that my posts cannot be, these days, much more than spews of  the immediate. There are so many exciting topics to cover from a patient management POV, based on abstracts from my experiences, such as the mistruths in your medical records (and how to correct them) -- yes this can happen -- watch out, and how to be proactive in your medical care (and when not to be) -- that can be a fine line.

It is time to throw in the towel for this round of battle. 

Probably, if I can stand back, the lesson is how to choose your battles, and those battles you choose, be prepared to disengage.

That is the hardest lesson for me. OMhMhMhMhMhMhMh

Friday, August 1, 2008

The Highs and Lows

So the shit hit the fan, so to speak, and my life has gone into quite a spin. A very different spin than I was planning.

At the tail end of my visit in Vail, co, with the fabulous medical folks, it surfaced that I have a major problem in my right hip now. I always knew I would have to contend with it at some point, but I was not planning now, in front of other scheduled events, including my wedding, followed by my planned shoulder surgery. Alas, my fucking hip has trumped everything. It was a weird experience. I got our of bed one morning to discover that I had consistent pain in a new place. I even got confused between my right and left leg. It was really disorienting. After quick Xrays, followed my an MRI the same day, followed by a consult with Dr Philippon and Dr Ho (radiologist) Saturday morning it was made clear to me that I had to address the right hip sooner rather than later. Quelle Drag!!!

Because we are not wealthy and the weather starts getting burdensome starting at the end of Oct. we have come to the dear realization that we need to hit the road and get out there so that I can have one of three pending surgeries (unless something else crops up), possibly squeeze in two. This is fucked up! This avascular necrosis stuff is for the birds. As such, so I can maximize my time out there, we need to postpone our wedding, at the end of September, and pack our bags and leave in two weeks, so we can squeeze in a trip through the northern US, I have always wanted to go to Wyoming and Montana to the Grand Tetons and Yellostone. So, that be the plan.

On the semi backwards good news front, I was awarded SSI, and received retroactive pay. I cannot believe, given how notoriously difficult the system is in awarding disability, that I got this in 6 months. OMG. I have heard it often takes years! This is good news, but it does seem strange to be happy that I have been considered officially disabled, by our federal government, so that I can receive benes. At least that relieves some of my pressure, and that is a good thing, as Martha says. So, with that news, I am quite done with the harriedness of the last 3 weeks.

Now, we prepare to move on, figure out the next steps, and find the good things in life....like a road trip through big sky country. I get to spend time in the Rockies (one of my favorite beautiful places), and hopefully bring Enzo.

So, there......bye for now

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