Thursday, September 26, 2013

Whirl Wind



Your world went from riding the horse on the carousel to your back up against the walls of the Gravatron, faster and faster your world seemingly spiraling out of control.   Then you see the red button in the center you struggle to get to it and hit slowly the world stops spinning.  Now you stand in the middle looking at 3 exits which one are you going to take each one holds a different road?
The door you really want is not an option that shipped sail over 5 years ago, another you can take isn’t in your best interest, which leaves 2 now the question is which one is more financial sense?  That is just the financial doors not even the medical ones which are way more grim.

Funny how it takes poison and some drug called Leflumodie is now waiting in the wings in case round 2 of methotraxte doesn’t go well, as in if I get the Rash again metho is doneso……..Just a little info apparently leflunomide,  has a half-life of 2 years, meaning in order to get it out of your body you got to take another set of drugs to flush it out of your system before going you can start another drug…..which by the way they have no clue what drug that will be….on top of that the Leflumodie has yet to be approved by the oncologist.

As usually they can’t figure out the swelling in my hands or why I can’t make a fist with my left hand, apparently the swelling isn’t normal and apparently not sponge like it is supposed to be?  Great like usual I don’t follow the correct protocol of symptoms nor due the drugs work like they are suppose too………..ugh At least this could have an ending like a freaking Marvel movie and I can become a super hero that can fly and lift heavy objects, really is that too much to ask for?

Wednesday, September 11, 2013

4 years NED and the reality of disability

This October will be 4 years since I started my Chemo Holiday which I was told originally it would be for a short time.   I have blissful lived in the land of denial over the fact I have cancer and an autoimmune disorder but my body had finally stated enough is a enough.

I am officially on FMLA and in the process of filling out short term disability paperwork.  Which has made my family really really happy since they wanted this done 5 years ago.  I have also rolled the dice with taking a new drug that could possible open the door for the cancer to spread like wild fire.  I may be a little paranoid but I don't like how the liver is feeling, since the drug I am on is actually a Chemo but is used for autoimmune disorders but can damage the liver.

Will it be my friend or enemy only time will tell, guess I will find out at the end of Sept. when I go see the Oncologist.  My schedule is still crazy apparently my body wants to stay up the exact amount of time I slept on most days, sleep 14 up 14 hours.  Then there are days 1, 2, & 3 after taking the Methotraxate that is taken once a week I will sleep a day and sometime a day and half.

Now I got to figure out money, since normally I am getting overtime in the fall, so that means a lot less money while my medical bills continue to grow leaps and bounds.  One of these days this month I will have to figure out long term financial issues, applying for social security disability, we sorta got a handle on the amount of money from work disability.  Luckily one of my credit cards that I have had to use for medical bills has a medical hardship so they are processing my paperwork, now I have to figure out if the rest of them have this too.

After FMLA will be short term disability as we try to put a cork in the damage the Sjogren's is causing, it has been a frustrating year, with the inability to sleep, not being able to open a bag of chips and having to use scissors, dropping things because the dexterity has become hit and miss, pain from the ridges on a bottle of steak sauce, not realizing you cut your self until you or someone else notices the blood, swelling of joints that want go away just a few irrations.

On the bright side I think I am catching up on my sleep, only time I set an alarm is when I have a doctor's appointment which are now in the afternoons.   Hoping to get back in some sort of shape when I get back to J['ville so I will be ready when the cancer decides to go on to round 3, got my bike put back together, but I think I will be during a lot of night swimming since it is less stress on the joints.

This is definitely going to be an interesting ride over the next couple of months.