Ode to Matthew Wilder

Again I know, it's been a long time...

Honestly the last month or so has been a complete whirlwind - I don't think that even whirling dervishes are as physically dizzy as I am mentally.  Life has been a roller coaster - the highs are very high and the lows are very low, I've always loved roller coasters but living life like you are constantly riding one is a bit insane.  There have been times in the past couple of weeks that I cried for hours, and when I say cry, I mean it in the biggest sense of the word.  Sobbing uncontrollably, there were not enough tissues to keep up with the tears, I talked to my deceased grandmother and my deceased father, asking each if I was making the right choices, if I was doing the right things, asking them to give me strength that I did not think I possessed.  I prayed HARD to God, not only asking for help but also screaming out in rage for putting me through so much.  I did not know if these helpless feelings would stop, I do not remember ever feeling like this and I have been through a lot in my 33 years of life, I thought that I was prepared for anything.  Well, guess what?  Turns out that I was wrong.  Eventually the tears stopped and determination took over, damnit I am a fighter, always have been and always will be.  So here I am, semi-prepared and getting ready for the fight of my life, literally.  I have a new sense of passion and I somehow just 'know' that everything will be okay.  They say stuff like this builds character, well if that is the case then I am or will soon be chock full of it! 

So here is the jist of what has been going on - the last time I blogged I was preparing for my 3 days of evaluation testing.  The testing went well for the most part, there were parts that got completely screwed up but those of you who have CF or any chronic illness know that this is just a part of the medical system.  You can't be a chronic patient without expecting there to be delays, problems, etc.  The 3 days were pretty much as I had expected, appointment times got changed without anyone notifying me, I would report for a certain test and the desk clerk would tell me that they have no record of my having an appointment, blah blah blah - the list goes on.  The important part is that all of the actual tests (once they were done) went well.  My biggest complaint is that one of the fasting tests took wayyyyyyy too long - if you know me you know that I don't deal well with hunger, I’m like one of those 'divas' in the Snickers commercials.  At one point I exited the 'testing' area and burst into the waiting room wearing socks and a hospital gown.  I saw my husband Tommy and my mom sitting there, staring at me, amongst others who were waiting for their loved ones or their appointments.  I started yelling loudly and ranting and raving that I was hungry, in words that are not so nice and I have deemed censored.  I want to express my impatience but I don't want you guys to think that I am a bitch, even though sometimes I gladly am :)

So fast forward 2 weeks later, I had my follow up appointment to review my eval results on January 24th, I was so nervous I thought I might shit myself.  Along with me was Tommy, my mom and my best friend Tabitha, I wanted/needed as many support people with me, this appointment could go either way.  I get called in and the nurse began to take my vitals, I was so nervous that my pulse ox was 85, for me normal at rest is about 93.  She told me to breathe in deep through my nose and out through my mouth calmly, after a couple of minutes it rose to where it normally is.  We were then ushered into a room to wait for the transplant coordinator and doctor to come in, we made small talk and joked even though no one felt like doing either.  Having people who support you no matter what is priceless, without them I do not know where I would be today.  The transplant nurse comes in and goes through my testing results with us, all of my organs (aside from lungs obviously) are working normal which is vital.  My FEV1 on the day of the PFT (pulmonary function testing) was 30%, which for me is good, it usually falls somewhere around 25%.  FEV1 is the amount of air that you can blow out of your lungs in 1 second - for normal people my age the average is around 90%.  Most people who are listed for lung transplant have an FEV1 of 25% or lower.  I also found out that both of my lungs function at basically the same level, 1 is functioning at 49% and the other is functioning at 51%, this is good news the coordinator explained, some people have 1 lung that is doing very well and 1 lung that is doing very bad which warrants a much quicker need for transplant - so basically I have time - yay!  They currently only have about 30 people on their waiting list for double lung transplant - wow - I was expecting the waiting list to be at least 200 - what good luck I was having!!! 

OK so here comes the kicker and the point of all of my stress since then - I was told by my HR department that since I live and work in PA (since I now work from home due to my illness and have been since January 2010) that I am no longer eligible for NJ state short term disability.  OK, I say so what about through the state of PA, surely I must be taxed for this out of my paychecks since I live in PA and have since 2005 with the exception of my stint in the UK.  Well to make an extremely long story short I was told that PA has no such state program and none is offered through my company - they do however work with a third party LTD company (long term disability) that I can apply for.  I take their advice and apply and low and behold 7 days letter I get a rejection letter from them - I am not eligible for coverage through them because of my CF.  My HR department has been beyond UNHELPFUL, the only thing that I know for sure is that I have no STD or LTD.  One would have thought that perhaps they would have told me this back in January 2010 when I informed them that I was moving back home to PA, especially since I have used STD at least once/year since my employment with them began back in 2000, not trying to throw blame here but I was COMPLETELY blindsided.  I went through all of this with the finance coordinator and the social worker at UPenn and due to the fact that I have no STD or LTD they are not able to add me to the UNOS list.  They cannot transplant me and then risk me not being able to afford the post transplant drugs due to lack of income.  I am now also forced to continue working even though there are days that I can barely get out of bed, my boss and co-workers are as understanding as possible but I know that I am putting a burden on them and it is not fair - but such is life, right? 

So here I am, sick and sick enough to qualify for a double lung transplant but I cannot be added to the list due to my disability status.  I contacted the CF legal hotline and the woman that I spoke with sounded as baffled and confused as I am, she said that the woman who runs the hotline is a lawyer who actually has CF!  What a solid advocate!  She was going to relay my situation to Beth and have her call  me back.  So at this point that is what I am waiting on. 

I asked my oh so helpful HR department about a week ago if my NJ STD status would change if I were to move back to NJ, the HR director basically told me that he did not know and I should follow up myself, he also provided me with the link to the NJ Department of Labor website, what a gem, right?  I navigated through the site as best I could and I think I found an answer - I think that I have to live in NJ (pay into NJ SUI/SDI) for 5 consecutive months before I can be eligible to collect STD.  So worst case scenario (at this point) is that I move back to NJ and live with possibly my grandfather.  I would miss my husband, my mom and my dogs beyond belief but if this is the only way for me to get the transplant that will save my life then so be it.  I am hoping that the CF lawyer will be able to advise me otherwise, I may even have to hire a disability lawyer, honestly I do not know what is going to happen from here - if anyone has any advice PLEASE let me know!!!!  In the meantime I am going to focus on starting fundraising etc and try and keep a positive attitude :) 

Whatever the outcome I am not going to go down without a fight, I'll go down guns blazing if need be.  I feel like Erin Brockovich Part 2, ha ha. 

So this all being said now I am done feeling sorry for myself and I am ready for battle, like Matthew Wilder said (hence the title of this blog) Ain't Nothing Gonna Break A My Stride - my theme song for the rest of my life!!!

Peace to everyone and a sincere thank you to all of my friends and family who have put up with me despite my mood swings, coughing fits and general bitchiness.  I promise you all it's going to be a crazy ride but well worth it.

Love to all,
Bets