Hi all - Welcome to my page - Hopefully you will get as much out of reading these as I got from writing them

About Me

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Easton, PA, United States
40 year old, CF - Received double lung transplant on March 6, 2013. Received single lung transplant on March 1, 2017

Thursday, December 21, 2017

Ramblings of Fortyness

So I haven't exactly followed my goal of posting once a week, oh well to err is human, right?  

This blog post is going to be slightly different, there is no story line, it is my thoughts, my stream of consciousness, my ramblings of a madwoman if you will...

Anyhoo as all of you probably know I turned 40 on Monday, I am still in a bit of shock, I think.  On one hand it's a bit depressing but on the other I should have technically been dead in 2013 so I'm trying like hell to be grateful.  I did have one of the best birthdays of my life, I cut and colored my hair drastically and I love it, it's dark and I feel like one of my childhood idols, Snow White.  Had an amazing dinner at Two Rivers Brewing Company on Saturday with my oldest friends in the world, my brother and his girlfriend and of course my heart Tommy.  On my actual birthday I drove up to see my mom as I was in a funk and felt much better after our visit even though it was short.  Tommy and I went to the movies that night and saw Daddy's Home 2 which was pretty decent and got me in a happy and joyful mood for the holidays and yesterday my sister and niece came to see me and we did a birthday lunch and pedicures, it was fabulous.  Tommy and I are leaving on Friday for North and South Carolina which is fucking sweet!!  I believe spending the holidays with his family will cure the darkness I've been feeling lately.  

Christmas time brings up a lot for me, the older I get and the more time goes on the people I love the most seem to vanish and disappear.  I had a breakdown the other night thinking about my grandma, it all started with Grands rolls believe it or not.  I heated one up and put butter on it and all I could think of was all of the family holiday dinners we had at my grandparent's house wayyyy back in the day when I was a different person and how she used to always serve Grands.  The meltdown was insane, I cried so hard I could barely breath and then I started to think of DJ and how he has been gone for almost 5 months already, the pain was so real and intense I think if I stabbed myself in the chest it would've hurt less.  I don't know maybe I just needed a good cry.  The crying was so cathartic I felt all of the pain as if it was for the first time again.  Like I said maybe it was a good thing, at this point I can't tell the difference.  

Is pain a good thing?  It fucking SUCKS when you are feeling it but I also believe if there was no pain you would not appreciate the good times or the love that can be completely overwhelming and make the pain worth it.  

It's hard for me to fathom that I have had my new lung for almost 10 months.  After my first transplant in 2013 (double lung) within a few months my lung function was nearly 100%, I was never short of breath and I never even though about breathing once I recovered.  I had energy for days and the fear of dying was gone and felt like a bad dream.  This recent milestone birthday of mine has made me realize some new things that I haven't thought of before, maybe it was me protecting myself, wrapping me in some fake and phony cocoon, my subconscious mind doing a number on me as if it was a legendary actor who has won many awards. Someone who is so good that they can't distinguish themselves from the roles they play to who they really are.  I get it, I am it.  

I've come to the realization that I will never again feel that good and goddamnit it's fucking hard, nearly impossible for me to wrap my little head around it.  Currently my lung function fluctuates around 60%, several months ago one of my transplant doctors told me that 60% was most likely as good as it was going to get because this time around I was only able to get a single lung transplant.  I thought to myself in my bad ass brain that once again I would beat the odds and prove them wrong and make it to 100% again, I mean after cheating death twice one tends to feel invincible.  It's just beginning to sink it that most likely this is it, I do tire out quickly and there are times I feel short of breath and panic, I use my inhalers almost on a regular basis and for the first time since I was nearly inside death's embrace I know that I am not going to live to a ripe old age.  I'll be lucky if I live to see my 50's.  I should be thankful, I beat death twice so far, can I beat him again?  I'd like to think so but the reality of the situation is most likely not.  The chances of a third transplant are slim and honestly I don't want to do it over again, the second time put me through the most emotional and physical challenges of my life.  I did not think I was going to live and I had made peace with it, I was actually starting to look forward to my version of heaven even though I'm not even sure if there is a god.  Sure I pray to him from time to time but does he actually exist or am I just rattling off my wants and needs to the big empty?  

Sorry if this has gotten depressing, I need to get it out.  

For the remainder of the year I am going to do my best to put all of this negativity away.  I spent the day wrapping Christmas presents and really forget about all of it, my mood was great and my spirits higher than they've been in a while.  Is that God or is it me?  Maybe a combination of both.  Maybe just me. Definitely partly the Universe.  You get what you give and what you put out, that I truly believe and because of these beliefs I NEED to be positive as I've been in the past.

How else can I expect another miracle?  I just know it's out there, waiting for me

And I'm patiently waiting for it...

Tuesday, October 31, 2017

A Long Time Coming

Hello faithful followers and viewers ~ It's been forever and for that I am sorry, not only to you but also to myself.  Over the years I've both gained and lost a lot, by not blogging and living up to my full potential I feel that I lost a bit of my mental health and suffered from serious depression.  I'm trying to get better and stop feeling sorry for myself and start to sort through all of the fucking bullshit and believe me, there is a lot.

For starters as most of you probably already know I had yet another lung transplant.  I'm now going to write through my feelings from the beginning of the end, as this the year of 2017 has been by far the most difficult of my life, only secondary to 1991, July 25th to be exact.

I had been sick for a while and in denial for the better part of my sickness.  It began on Father's Day of 2016 when my husband Tommy and I were putting together a trampoline for our foster son, DJ.  We just finished putting it together and I decided to have some fun and jump up and down on it, as soon as I started a horrifyingly old enemy came slowly sinking back; I was short of breath.  I thought nothing of it at first (here starts the denial) and had a seat.  After a few minutes the feeling diminished but never did quite go away, at this point I had my new 'superior bad ass' lungs for nearly three and a half years.  Little did I know that one of my worse nightmares was about to become a harsh reality.

Over the next few months the shortness of breath just got worse and worse, eventually I was bed bound and could not even get up and go to the bathroom without having a near panic attack, my lungs screamed for air that they were just too weak to inhale, I lost a lot of weight and nothing fit me, I spent many nights sleepless because of the simple fact that I was afraid I would not wake up, I was put on home oxygen again. I tried my best to be a good mother and wife to my boys, who I adored more than life itself but it was no use, my life had once again come to a screeching halt and for some reason this time around was much worse than the first, I felt death's embrace around me constantly, he sat in the corner of my bedroom.  I exuded a positive attitude on the outside but on the inside I was dying, alone and afraid.

'Heaven isn't too far away, closer to it everyday' - Warrant

The holidays had come and gone and I was not able to get into the spirit - I faked it the best I could for both of my boys and I tried to be grateful to be home and most of all, alive.  I hated all of the pictures taken of my skeletal self with that stupid ass oxygen hose hanging from my pale gray face.  It was now the beginning of January of this year 2017 and I had a doctor appointment at the University of Pennsylvania, by now I had been on the transplant list, once again, since October.  My cousin Sandy had recently moved from Florida to Pennsylvania only about thirty minutes from my house and she had agreed to take me to my appointment, at this point I was unable to drive myself anywhere.  She arrived at my house early to help me get dressed and ready.  (Sidebar - I also had not been able to bathe myself in months, more people than I care to admit had seen me naked and washed me.)  I attempted to lift my body off of the couch and I couldn't do it, keep in mind I weighed about 80-85 pounds, at the height of my health after my first transplant I was all the way up to 140 pounds.  Exasperated I started crying and the past 7 months hit me like the literal ton of bricks people reference.  At that moment in time I knew I was dying, not even dying, I knew I was going to die without a shadow of a doubt.  The Grim Reaper who had lived in the corner of my room and on my shoulder for months was now right in front of me, staring me in the face, I saw death, I felt it, I was in it.  My breath became less and less, I could barely speak, it was so terrifying it was almost peaceful. If I let it take me my struggles would be over, no more gasping for breath, no more throwing up everything I tried to eat, no more sympathetic looks, no more being chained to a bed, no more feeling like a horrible piece of shit for not being able to be a wife and most of all, a good mother.  The daily tears and hardships would be no more, I would no longer inhabit this diseased body I occupied, I would be free.  I would see so many I had lost; dear godmother Jean, both grandfathers, my grandma who was one of my best friends and confidants and my loving and sorely missed father; I was ready, I was ready, I was so close to the end I could feel it, I felt the peace wash over my body.  Take me now.  As quickly as the peaceful feeling came over me an even stronger, more urgent one took its place, the fighting spirit that I thought I had lost.  I snapped back to my breathless reality and told Sandy to please call 911, I was ready for the fight of my life to continue.  She called 911 and we waited...

Sunday, August 7, 2011

6 weeks down...

So it's been roughly 6 weeks since I have been listed, in the same breath I can't believe that is has already been 6 weeks and I can't believe that it has only been 6 weeks.  I guess this is the way I am supposed to feel, right? 

The last 6 weeks have been pretty uneventful in the grand scheme of things, the oxygen man came out last week to make sure my O2 machine is in good shape and the home nurse comes every 4 weeks to flush my port.

I had my CF clinic appointment about 3 weeks ago and things are status quo, my lung function is the same but my sinuses seem to be getting worse, I was told to try and find a sinus (ENT) doctor in my area, I am hoping that I get my transplant call before I feel the absolute need to do this and that the transplant will magically make my sinus problems go away.  Wishful thinking on my part probably but stubborness is a part of who I am, I feel like I have control of nearly nothing now so the need to try and regain some of that is strong. 

My previous employer's fundraiser that they did for me raised nearly $14K which is absolutely amazing, I got to see a lot of people a couple of weeks ago for the annual sales conference.  It was a glimpse of a former life which I seriously took for granted, also a very nice reprise of my current life, not so much my life actually just my lifestyle. 

Last night was another benefit at a local bar and it was a great turnout and a good time was had by all, thanks so much to Tabitha for getting me involved with the Banding Together foundation. 

I am sad today as Tabitha and Jeff left this morning for a very good friend of mine's wedding.  She is getting married on a cruise and I so wish that I could be there for the wedding and the cruise, I have to remember that taking care of myself and waiting on the list is my number 1 priority, although it is what I need to do right now I find it more and more difficult everyday.  I want the focus to be off of me and I want a normal life.  I guess these are things that most people with CF struggle with everyday, when I was more healthy and was working it was easier to deal with, now I feel like most things revolve around me.  Don't get me wrong I am eternally grateful for everyone and everything that people are doing to help me, I just want to give back and shift the focus, I want my transplant call to come and life to go back to the way it used to be. 

Well enough of feeling sorry for myself and wanting change that is not going to come, today I am going to do normal things like straighten up around the house and go food shopping.  I am having my niece and nephew over in a couple of days and keeping them until Saturday which I am so looking foward to.  I am going to play with my dogs and do my treatments and fill out my fund transfer forms from my fundraisinig to pay a couple of medical bills.  The more I do the more I realize that I need to learn to integrate parts of my old life and new life together and to accept that change of any kind is stressful and difficult and what I am feeling and going through is normal and so am I.  And that I have the best family and friends in the entire world.  And that I am going to be okay, I am strong and I am a fighter and it is okay to take a break from both of those roles once in a while as long as I don't linger in that break. 

I have CF but it doesn't have me...

Tommy - You are the best husband in the world and I love you more than I could possibly express...

Love to all,

Friday, June 24, 2011

And the countdown begins

Hello all fellow bloggers and followers!

I have quite good news to report on all fronts, I got a call from my transplant coordinator this past Tuesday morning and I am now officially on the list!  My LAS (lung allocation score) is a 32 which puts me right about in the center of the list which is a good place to start, they obviously are not able to give me a time estimate but I like to hope that I will get my transplant around my birthday/Christmas.  All I want for Christmas is my 2 new lungs, lol. 

I also got my APPROVAL letter from social security disability this past week as well, I will begin getting monthly SSD checks in November, I am so happy and grateful, I still feel as if all of this is surreal and I am reading or living vicariously through someone else.  Nope this is me and this is the real thing, the proverbial ride of my life is beginning! 

So I have now been out of work for close to 2 months, the first week was horrendous, I felt so lost and out of place and did not feel like a productive part of society.  I have been able to work through (most) of those feelings and I am now in a much better place, I try and do little things each day to keep myself busy. 

The fundraiser through SHI is now complete (yay!!) and I should be hearing from HR within the next couple of weeks when they can present me with the final amount and check.  My BF Tabitha also knows someone who does fundraising work and she is supposed to have 3 events in the next couple of months and all of the proceeds for those events will be split between myself and another family in need.  Seems like nearly everything is on track for the first time in a long time! 

I had a visit from my Aunt and Uncle from Kentucky earlier this week, I haven't seen them in close to 8 years.  We had a wonderful visit and they brought me a box of things that belonged to my Dad, I went through them and though it was emotional at times it was worth it, I think I worked through some of my feelings and have a bit more closure than I used to.  For those of you who do now know my Dad committed suicide on July 25, 1991, nearly 20 years ago and I still have a hard time dealing with it.  Seems like all of the transplant stuff that has been going on has really opened me up emotionally and brought back a lot of old feelings that I thought I had already dealt with - well guess what, that is not the case!  It is a very positive thing though as I feel like I actually acknowledge and understand my feelings.  I just wish that I could turn off these damn tears for at least a week, I need a break from this crazy ass ride - I guess the song rings true, you can't always get what you want, but if you try sometimes you just might find you get what you need. 

I have 2 doctor appts coming up soon, Dr. S on July 5th and then my UPenn appt on July 26th.  My yearly family reunion is on July 23rd and we are going, I am excited to see family members that I haven't seen in quite some time, I think the last family reunion I was at was at least 10 years ago.  It is being held at my Aunt and Uncle's house in Maryland and the theme is Hillbilly Heaven 2011, should be a blast, I have my overalls, cowgirl boots and hat ready to go :) 

So that's the story for now, wanted to write more but I am exhausted!! 

Love and peace to all!

Wednesday, April 27, 2011

Happy thoughts...

My last day of work is in 2 days, wow.  Although I have been planning this for a while I guess I never really thought it would happen - seems to be an ongoing theme in my life.  I have my exit interview on Friday and my benefits review and the lawyer that I've been in contact with through the CF foundation will be filing my SSD paperwork soon.  I decided to go into the actual office on Friday for my exit interview, whether it's for better or worse there are things that I need to say and get off of my chest (besides literally my lungs) and  I do want to see people.  It looks like the fundraising is 95% approved so hopefully all of that will be a go as I have to start paying for COBRA soon and will have no income until the SSD kicks in.  So the big news is I had my UPenn appointment yesterday, it seems that they all agree that I have done everything that I needed to do and all is in order, I just need to provide them with proof of my COBRA insurance which I should have within the next couple of weeks.  Once this is in order I can be listed, the doc said that once listed I won't have to wait more than 12 months.  Even as I type this I can't believe it.  All of the frustrations and tears and determination and endless phone calls (which I hate to make due to my stutter) are paying off.  I know that things can still go wrong, never think for a minute that you are 'home free' but it is amazing to know that the process may actually be starting soon.  There are still so many thoughts running through my mind, what happens if I get worse and die waiting, what happens if I go through the surgery and it is not successful and even more that are far too morbid for me to even admit to myself that they exist.  But without the negative there would be no positive and this is what I need to focus on.  So for today, for this hour, for this minute things are good and my thoughts are happy.  

I sent an e-mail out to about 100 or so employees of my company, people that I have met through the years and who have been a part of my life explaining my situation, the responses that I received were beautiful, so many people sending positive thoughts and wishes, even several personal stories about others who have known transplant recipients.  I will save these e-mails and cherish them always. 

So I guess the bottom line is it's okay to have sad thoughts and it's okay to have bad days when you just want to throw in the towel, without these things we wouldn't have any sense of being grateful for what we do have or what we are given.  Even the possibility that I may be given the gift of new lungs and a new chance at life is surreal; people are rooting for you and pulling for you even when you can't do it yourself.  

Hopefully I will have more time to blog soon :)

Thanks for reading and caring and sending positive thoughts and prayers, they comfort me and bring me back to a better place when I need them most. 

Monday, March 7, 2011

Moving Right Along...

So it's been 1 month exactly since my last blog and man oh man what a month! 

I managed to sort out the financial issues that I was having, as you remember from my last blog having no STD or LTD (short/long term disability - NOT sexually transmitted disease) was making it difficult for me to be added to the UNOS list.  After a combination of following suggestions and doing a boatload of research everything now seems to be in order.  I am officially resigning from my job, my last day is going to be April 29th, this brings both good and bad feelings, I am glad because I really have been feeling too sick to work and I need to relax and focus on my health, bad because I have been with my employer for nearly 11 years.  I started when I was a mere 22 year old, that sounds like light years ago, pretty much almost my entire adult life has been spent here.  I have made the world's greatest friends (you all know who I am talking about), have found 2 husbands (one straight and one gay who wears really tight pants I might add) and have went through so much growth and change but like everything else the chapter has to eventually end.  So with Whitney Houston's I Will Always Love You lightly playing in the background (bittersweet memories, that is all I'm taking with  me-eeee-eeeeee-eeeeee) I try and look forward without looking back too much and will have my final good-bye to said company in 8 weeks.

As I will no longer be employed this lets me apply for SSD (social security disability), one of the WONDERFULLY helpful people that I have met on this road has told me that with my health status and lung functions that it should take anywhere from 2-5 months for me to be approved, once approved I will have monthly income and therefore (drum roll please) can be added to the UNOS list - victory victory let's repeat it!!  I am expecting a nice fat commission check in April and this will get us through financially until the SSD kicks in, then life goes on as we know it and I wait, it will be nice to just sit back and wait when the time comes, have friends over, chill out and catch up on TV shows and movies and write my BOOK, there has even been mention of a retirement party which would be awesome to have at 33 years of age.  Just in time for spring as well, SWEET!!!  I am looking forward to spending a lot more time with my brother, sister, 6 month old (as of today) nephew, and other family and friends that have got me through one of the most difficult times in my life.  The rage and anger that I once felt turned into persistence which has now become gratitude.  Although having CF is not the best thing that can happen to a person I would not change it for the world, I have learned so much through this journey called life, it has formed me into the person that I am today and she rocks :)

So onto part 2 - I hadn't been feeling well so a couple of weeks ago I called my CF doctor's office and told them, they said to come into the clinic the next day and pack a bag just in case.  I did and was admitted, there were ups and downs, I was going to go into detail about them but maybe I will save that for another day, the point seem to be moot (?) now.  Due to the crappy ass veins that I have and them being used for 33 years I got a portacath on this visit, it has been 1 week today since I got it and I am finally starting to feel better and have a lot less pain.  I was discharged from the hospital this past Thursday (I spent about 10 days there) and am now on home IV, my follow up with the brilliant Dr. S is on March 15th, I am so looking forward to it, I can't wait for the port needle to be taken out and then I can actually shower again and not take sponge baths as glamorous as they are. 

Well gotta run, the home nurse will be here within the hour to change my needle and my dressing, thanks to everyone for visiting and cheering me up while I was there and since I've been home.  You all rock my world in ways you will never know. 

Later dudes,

Monday, February 7, 2011

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,