Update!!

This was a status update until I noticed it was forever and a day long! So, here is my medical "update " or should I say my medical cluster @$*!

Ahhh setting up a new everything and finding the right doctors has been torture the past few weeks! I feel like Hospice should have helped me set everything back up when they discharged me, instead of just never seeing or talking to me about anything at all.I feel like the entire hospice care system as I was seen by two different ones just dropped the ball with me all together. 

I have yet to speak to, Amedisys Hospice about them discharging me with the actual company. I was informed when I was discharged from Fairmont Regional Hospital by thier social worker that, Amedisys Hospice was not going to pick me back up as a patient.

Due to me not being, "Hospice minded". Which she explained to me just meant that I was still wanting to receive IV antibiotics to maintain my health at this level, instead of just letting my CF progress and worsen. I called hospice after that conversation and was ignored several times. I have still yet to be told by them that I'm no longer a Hospice patient.

♡Keep in mind my health has NOT changed from when the CF team first put me in Hospice Care. I have been able to maintain my level of health only, because of me wanting and getting IV antibiotics when I felt a flair coming on. My goal wasn't to die, I don't think that is anyone's goal! I am sick of being sick and so tired of being tired, however I'm 28 years old! I'm not ready to hang out with my Grandpa just yet! So, yes I'm still fighting to live!

The first issue that came from this BS is having to fix my insurance after being terrified when I was told I no longer had ANY type of insurance. Luckily, it was fixed last Wednesday, five days ago, but not without leaving me medication-less for two weeks.

♡I tried to get an appointment with the doctor that had me as a hospice patient, because he is a PCP in my home town as well as a hospice doctor. I figured it would be so much easier for him to be my actual PCP knowing everything I am going through and that my health is still just as bad as it was 3 month ago. They were setting up an appointment date for me with him and then couldn't be any more rude after I said I was discharged from hospice. With a very quick and snappy reply, "Oh never mind I thought you were still with him in hospice, no he doesn't have any room for a new patient!" Really? Really, no room? Ok!

WV had it as if my primary insurance was still with Amedisys Hospice and WV medicaid was secondary, so they wouldn't pay for anything until Hospice discharged me in writing! Of course the Hospice company was giving me a hard time with not returning phone calls and being unbelievably rude, complicated, and unprofessional when I did get ahold of them. Thankfully the insurance part is now fixed and is under control.

I now need to get an all new PCP, Pain, and GI doctor. I have to re-establish care with the Pulmonary doctors up at WVU Hospital or decide if I want to go to another hospital that specializes in CF near me like John Hopkins or UPMC. I just hate the drive and the fact that I'm rarely visited as is when I'm hospitalized now and WVU hospital is only a 30 minute drive away. Both of those choices are two hours away from home talk about being alone.

♡I have so much on my plate and so little know how when it comes to figuring any of this out. Needless to say tears of frustration is all I've know this past week. I will get through it and get it right, I just hope it's sooner than later.

BUT, I am feeling ok right now and WILL be home for Thanksgiving!!! At this point that is all that matters to me!! I do have a LONG day of running around and making phone calls tomorrow! It seems like I have the world set against me, but this girl will be with her family AT HOME eating yard bird, on a table and not in a hospital bed for the first time in 3 years this Thursday! That is all I need to keep me going at the moment!!

☆♡My entire family have all decided they never want hospice around them when it's their time. I'm not sure what it was or why I was treated or should I say mistreated by the hospice system, but it HAS to be a better experience with other people. Maybe I'm just a terrible patient or something I'm not sure. Maybe it was my age, my looks, my positive personality, my laughter, and smiles. Maybe it was CF and they were confused with it. I'm not sure what it was, but I pray, and I don't pray, that I'm the ONLY person that's ever been treated like this!!!!♡☆

Confused beyond confused,
   Sandi

For more information on my terrible not so fun roller coaster ride with Cystic Fibrosis follow me on Facebook!

CF, You, & Me

CF isn't a selfish disease and doesn't solely control your body it affects EVERYONE who has ever stepped into your life. Even those who are no longer a part of your life will forever have an impact by the disease, simply by making them aware of it. Everytime Cystic Fibrosis is mentioned those people will always think of you and your fight if they want to or not.

So, how do those who are closest to you cope with the disease? How do they deal with tragic and terrifying situations CFers have to go through? Honestly, I have no idea! Logically the only way of knowing this was for me to ask my family what CF and knowing me has meant to them. What watching me grow up sick and overcoming the expectations has been like and this is what they had to say.

☆Keep in mind everyone reacts differently to the disease and the CFer, so my family's answers are their's and their's alone. I only hope that a little advice from them can go a long way for you!

Peggy - My mommy
   From the very beginning when I looked into the eyes of my beautiful daughter I knew she was a fighter. Even though the doctors had already written her off as failure to thrive. There were quite a few scares and tears as she grew up, but it never seemed to stop her. We made sure her life was as normal as possible. Keeping her mind as well as her body away from the negative and towards the positive was one of our main goals. She reached for that golden ring in what ever she chose to do and still does, whether she seceds or not she always gives it her all!

   Raising a child with CF taught me not to give up, no matter what the Dr's. have to say. We made sure she stayed active during her teen years. I knew she had all of this energy inside of her so we took advantage of it. First with cheerleading which she excelled at, to camping, motorcycles and swimming at the local pool everyday every summer. It all sounds like a pretty normal childhood I'm sure, but the hospital stays were anything, but normal.

   So many Dr's. said so many different things! That alone can be overwhelming! At one point it felt as if we had moved into the hospital we had been there so long. But, like a trooper she has always had that smile that lit up the room as to say, "It's alright mommy I'm going to be ok. Besides there is a dance next week and I'm not going to miss it!"

☆My advice, if any one is interested is to make sure you show your CFer that she /he is not alone and that you are there to make sure they know that CF it not a death sentence, it is a reason to live as happily as anybody else out there and do it with a smile! ♡

Peanuts - My daddy
  Any advice I can give to another CF parents is to love them to death and let them do whatever they want and no matter what happens stand right there good, bad, or otherwise. The day Sandi was born was the proudest moment and the most terrifying day not knowing if we would get to see her succeed. A parent is never supposed to bury their children or even think about it and we do everyday.

   One of my favorite memories was escorting her across the football field for homecoming court she was so beautiful. Oh hell, I can't pick just one thing we did together that stands out it is everything. Every cheerleading competition, motorcycle ride, or dirt bike racing I loved every minute of it. We never stopped her from doing anything she wanted if she could physically do it or not. We just did it with her and she never failed.

☆She never had the word, " no " in her vocabulary. That may be why Tyson has so much to live up to, sorry man!

   If you take anything from this old man always help your kid go out there and give life a shot. Let them do what they want even if a doctor says they can't. Kids are kids no matter what!

Tyson- My "Husband"
  The ups and downs to being with a my terminally ill "wife" have been many. As you all know Sandi has Cystic Fibrosis. Something I didn't know much about until I starting going around her. It's not the same for everyone, but these are my thoughts and opinions on our situation.

   When we first started dating it really was just like any typical relationship. Within a few months came her first hospital stay when we were together. I wasn't sure how to react or how things would go, but it didnt change a thing for how I felt for her. Two weeks later she came back home and everything was back to normal. Hospitalizations gradually became more frequent from once every 3 or 4 months to every month and now to what seems like she is in there for 2 to 3 weeks, home for a week, and back into the hospital.

   I have been there for surgeries and helping her recover at home many times. It does tend to put a strain on the relationship just because there is a lot of time spent apart with tons of worry and concern on how much longer will I get to be with the love of my life. It does make us appreciate our time together at home a lot more.

   It's also hard to schedule or plan things for the future, because it's not known when she'll be back in the hospital. I do my best to make sure she is happy and does not go without. I utilize the time she is in the hospital to set up small surprises for her when she comes home. That way she knows I'm always thinking about her. I give her everything she wants and needs anything to see her beautiful smile. My biggest worry is losing her as she means more to me than anything in this world.

   Even though it's a tough situation for anyone to be in when you love someone and care for them as much as I do for Sandi you will go through anything side by side until the end of time!

☆I was told by a member of my own family that I am too young to deal with the situation I am in and to leave her while we were dating. Let me just say he is wrong and it couldn't be further from the truth.

   Don't get me wrong it is difficult, but I am able to stay strong and we go through this together day by day! I feel that the strength I am able to show and put out reflects very well and it helps her to stay strong and continue to fight. I refuse to let her give up or slow down. Sandi is a fighter and will continue to be one. I love you Sandi, we can do this!

Derinda - My big sister
  Me being 10 years older than Sandi it was kinda hard seeing her get all the attention and not really knowing why for the longest time. I felt jealous, neglected, unwanted and all kinds of negative things, although I wasn't it was hard. As I grew to kinda understand the problem and the disease I let go of those feelings and was amazed at how strong she is for as tiny as she is.

   Yeah, I was still kinda jealous of all the attention she got, but I was and am a big part of giving that attention. I remember giving her, her breathing treatments and helping her count her pills.

☆Apple sauce was it's own food group in our home. As it was easier for her to take all of her medication mixed in it than it was to swallow many large capsules.

  I guess growing up I felt she was a spoiled rotten brat and now that I'm grown I know she is. Just a brat who deserves to be spoiled. Now, I'm only jealous of how strong my baby sister is, I wish I had half the courage that she does.

Everyone handles diseases differently including your siblings and friends. Not one person is wrong for thier feelings and ways of dealing with CF. Just remember that CF includes so many people, not just the patient.

Not alone,
  Sandi

For me about Cystic Fibrosis, my story, or random CF tidbits find me on Facebook.

Always Smile