Starting Saturday

Today is a new day, I have been so caught up in feeling sorry for myself and trying to make decisions that I shouldn’t have to make, decisions that no one should have to make that I have forgotten to sit back and see the good I have and all that joy that I can still experience. I have been through a lot of things in my life, especially within the last year and I never wanted anyone to see me crumble and give up so I fought even when I didn’t think I could. I fought for my life when I could have easily let it slip away, but I’m still here and I will be damned if this disease or anyone is going to make life unhappy for me. 

I went to visit my transplant doctor in Baltimore about a month ago and she again told me all the horrible things that can happen with transplant and all the statistics and all that baloney that I have heard at every single appointment I have with her, she didn’t have anything new to tell me other than to think about what I want to do. Within the week though, I received a letter from the office saying that they were denying me for a transplant because I was not healthy enough to go through the process……….. I had an idea that this was gong to happen based on the way she was talking at the appointment and on the phone prior to but when I got the letter it really just sent me into a frenzy of different emotions. I was sad that that hope was gone, I was angry that I was getting denied, and I was extremely irritated and angry that my doctor neglected to tell me this news while I was there with her in person. Instead she just kept saying that they were still considering me if this and if that. Obviously they already had there answer at my appointment  if I received a letter barely a week later and my appointment was on a Tuesday and they meet to discuss cases on Mondays. So, needless to say, I am currently finding a new doctor. 

I have been doing a lot of research on treatment options for BOS that have helped others in stabilizing the disease and I have found a few things that I may be able to try and hopefully one of them will work! I will have to go back to my doctor in NYC to begin the process more than likely but I will also work with a local doctor for the weekly things. I am in the process of getting all my appointments set up and will be talking to the doctors about the things that I have found and hopefully together we can come up with the best treatments to try for me that I haven’t already tried. I know none of them will cure my disease but, some are supposed to slow the progression, which is better than nothing!

I’ve also been struggling with a huge decisions since being denied, should I continue to fight for a transplant and go through numerous tests and procedures or should I just try to stabilize my disease as much as possible and enjoy what life I have left to the happiest of my ability. To most it seems like an easy decision right? Do the transplant, of course, just get through the test and procedures and the actual transplant and then you have your life back and you will live a long life. But, it’s not that easy. A transplant for me has so many risks, I could not make it through the surgery and if I made it through that I could then have so many different complications during recovery that I don’t make it through. The recovery itself would be one of the hardest things I would have to go through and it could mean a year in the hospital, a year away from my family and my dogs. I know, to most people your thinking, really your dogs? your worried about being away from your dogs? YES I AM, my dogs have been with me since day one of being diagnosed with cancer over 5 years ago, they are like kids to me and they help me get through even my roughest of days, so yes being away from them for a year would be extremely difficult, especially if it was for nothing and i didn’t make it. Theres also the likely chance that I get this same exact disease again after my transplant, so that has me questioning why go through all the pain and suffering of a transplant to just get this same monster again and lose precious time with my family and friends. Why not just try to stabilize my disease as it is and try to live the best life I can while I can. I know that I will eventually not be able to fight anymore, but until that day I would really like to know that I was as happy as I could be doing it. 

On the other hand, what if I do fight for the transplant and miraculously I make it through the surgery and though the recovery with no major problems and I don’t get BOS again and I do get to live a much longer life? I know there is no way to know what is going to happen and that’s what makes this so hard. It’s like I’m choosing whether I live or die and it’s not a decision I want to have to make. I feel like I make up my mind and then I quickly change it in fear of choosing the wrong path. I’m admitting to being very scared and very lost in this decision. I don’t want to feel like I’m giving up but I don’t want to make a wrong choice.  I know my family will support me in whatever I choose, which makes it easier, but I still feel like I might be letting them down if I don’t try for the transplant. I might be letting myself down if I don’t….. I can only leave this in gods hands and I pray that he sends me an answer or sends me sign in the right direction. 

Simple Saturday

Wow, I just noticed how long it has been since I have posted anything, time sure has flown by. Since I have last posted though a lot has happened. I have had many different visitors, went on a little road trip for a day and spent a lot of quality time at home! Today was one of those quality time at home days, I spent the day watching TV and laying on the couch with my dogs! My mom also came for a few hours while Josh was at baseball and then when he got home we have just been watching football! So, just a relaxing day! Much like most of my days though! Im usually either watching TV or reading a book. 

My first visitor was a little bit of a surprise, my brother was able to get some leave time from the Marines to come and spent almost a week with me. It was so nice to get to see him and spent some time with him. He “baby-sat” me during the day while Josh was at work and even though we just sat and watched TV all day it was still a good time! I really miss not having him close to home and not getting to see him all the time. He is stationed in North Carolina right now, so its quite a trip for him to get here to visit. 

My next visitor was also a big surprise and a very unexpected one. My grandpa Bumpa came to see me all the way from Syracuse, NY. I haven’t seen him in a year so it was so great to get to spend some time with him. He was only here for a day but I am so glad he was able to make the trip down, I know how hard it is for him to travel. I was hoping to make it to his camp this summer to visit him but was unable to so I was very happy to see him. I sure do miss him and wish that we lived closer and got to see each other a lot more. He said he was also going to try and make it down in a couple weeks to my picnic that we are going to have so I really hope he gets to, it will be good to see him again!

Next, my dad and his wife Lovel came to visit for a few days while Josh went out of town for work. I always love having them come to visit, I love spending time with them! While they were here I got lots of home cooked meals too, so that was a plus!! They made me chipped beef gravy, chicken alfredo, garlic chicken pasta, keilbasa and noodles, general tso chicken, and chicken lo-mein! It was all delicious! Plus, I got leftovers to enjoy too for a few days after they were gone!! I’m also excited because he said that they are going to try and come down every other weekend to see me, it will be so nice to see my daddy so much!! I miss be able to see him all the time. 

I also had my normal visitors too, my mom, my sister and her family including my sweet adorable little nephew!! I just can’t live without seeing that little guy! I ventured out of the house one day and went shopping with my mom out of town last weekend. It was tiring and a little tough but I am glad that I went. I haven’t been shopping in a long time and it was nice to feel a little normal for a day. We got some things to re-decorate my bedroom which I am excited to do. I think a fresh look will be a good thing, it will be much brighter and maybe make wake up a little happier in the mornings! I think we are going to re-decorate tomorrow when my mom comes over to stay with me for a little while while Josh is at baseball. 

These past couple weeks have been pretty decent as far a my health goes, I have had a couple rough days where my breathing was a little bit tough and I felt a little weird, this afternoon was one of them but other than that I have felt pretty okay. (knock on wood) I did make a pretty big decision that I was nervous about at first just because of the name and when you hear it you think bad thoughts but it really isn’t what it seems. I made the choice to sign up for hospice. When I first hear this the first thing that comes to my mind is that that means that I am pretty close to dying and these people come in to help me be comfortable in doing so and I think that thats what were all accustomed to thinking when we hear this but its really not like that. The hospice nurse came out to the house to explain what it is exactly and after she did I felt much better, I was thinking I was referred because my doctors think that I am going to die soon, but I was referred to just make my life a little bit easier and make it so that I don’t have to run to the doctor or hospital every time I get sick. The nurse explained that they will come to me at my house and if they see that I am starting to get an infection, rather than me having to go to the doctors or go to the hospital because I didn’t catch it in time, they will call the doctor for me and get an antibiotic prescribed to get rid of the infection before it gets too bad. Also with being signed up for hospice they will make sure that I am always comfortable. The only thing is that they don’t believe in anything that prolongs life such as Iv’s or machines so if I ever do need an iv antibiotic or need to be put on a ventilator or anything of that nature I will have to decide if thats what I want to do and if it is I will have to be discharged from hospice in order to go to the hospital to have those things done. But, until i have to make that decision they are here to help me be comfortable in any other way such as keeping my anxiety down and keeping me pain free. 

This coming week will be a little bit of a busy week, I have nursing visits twice and CNA visits three times. The nurses will come and take my vitals and make sure i am doing okay as far as my health and then the CNA will come to check on me and help me with anything around the house that I need. I also have a doctors appointment in Baltimore on Friday with my transplant doctor. It is a check-up to see if my weight in improving enough and to check on my blood pressure and other just making sure my health is going in the right direction for transplant. I am hoping and praying that it all is and that she says that it will be time to be put on the list. Being on the list is my only hope at a chance to get my life back and be able to possibly breath again so it would be such a miracle if it couple just happen. The last time I saw her she said that I was not healthy enough as far as my weight was concerned because I lost so much when I was sick this last time and was unable to eat or keep anything down for about 2 weeks. I lost probably 10-15 pounds during that time and they need me to be as strong as possible for the transplant. They wanted me to have a feeding tube put in to help me gain weight but I denied it because I felt like to could do it on my own and really didn’t want another thing attached to my body and have to deal with that. I have been trying to eat as much as I can but it has taken some time to get an appetite back, I am still not where I should be as far as my appetite goes but it is getting better. So, hopefully I will have some good news on Friday!! I would really appreciate any and all prayers! 

Smiling Sunday

The day is sadly drawing to a close, and I say sadly because it has been such a good day. I just finished enjoying a piece of hot apple pie and ice cream that my husband went and got me because I was craving it! I also was spoiled with my favorite dinner in the world! Spaghetti from Castiglias!! Let me just say I crushed two servings which is a miracle for me, but for those of you who know the portion sizes there, that didn’t even put a dent in it! 🙂 I highly recommend this as a must place to stop and eat at whenever you are near Keyser WV, I promise you will not regret it! There food is the way to my heart! 🙂 

My day was also great because I got my nephew fix! He came to visit me for a few hours and of course brought nothing but smiles to face. He is as rotten as they come but way to cute! He can get away with anything he wants with his Aunt Nickie! (Of course I loved seeing Candice, Michael and Div Too). Thanks for coming guys, you brightened my day!

I also got to see my mom for awhile this morning, it was good to see her too. And for everyone who knows her get ready to have your jaw drop……….she sat down and watched a whole TV show with me lol   she only got up one time during a commercial and didn’t fall asleep!!!  For those go you who don’t know her personally, this is a rare occasion, she never sits still and when she does she falls asleep, so it was quite an accomplishment!

While she was here amongst many of her questions she asked me one question that I had asked myself many times before and have always thought what I would say when someone asked and I never really did answer her became I wasn’t really sure how to answer but having thought about it and really actually having to consider an answer I fianly have. She asked me….”If there was one thing you could do within reason with your capabilities right now what would it be?” She said I should make a short bucket list and try and do it. When she asked I just said “nothing really that I can think of.” But, through the day I kept going back to that question and thinking in my mind if I did make a bucket list what would be on it? What Do I really want to do and accomplish before I die? I’ve never really allowed myself to think of not being here too much longer, i’ve always had a fighting mentality and so it never really seemed real that I might not be and I might not get to do and see everything I want. Now, don’t misunderstand, I AM NOT GIVING UP, I AM STILL FIGHTING AND WILL ALWAYS FIGHT, but I have also recently truly came to acceptance with my prognosis and what could happen and so now i see things so much differently and in a whole new light , that I am in a small way thankful for, its something that not everyone will get to experience. It’s a feeling that is hard to explain, but is so great to feel. 

So, in answer to her question of what would I do? There are a lot of things that come to mind that I would like to experience like playing with a pet lion, going on a safari, going on a cruise, seeing the Eiffel Tower, going to Italy and taking a cooking class, going on an RV trip across the country with my dogs and husband and stopping at all the must see places, I want to go to the beach one more time, i want to ride a roller coaster one more time, and I want to go to my Grandpas Camp one more time. On bigger notes I would of loved to have been able to open my business I have been dreaming about (A Doggie Day Care and Treat Business), Do lots of volunteer work with the Lymphoma Society and Hope Lodge, and begin a foundation for abused and neglected animals. I had lots of dreams big and small. But my bucket list now, is down to just one thing….. I would just love a beautiful sunny cool day (so I could breath easy but still be warm) with a big cookout with all my favorite foods and drinks at my house where all of my family and friends just stop by all day and night and I get to be with them and my  dogs and create just one more amazing memory. Of course someone would have to make a scrapbook of it in memory of me—-Shawn Lantz thats all on you since your are the only other scrapbooker in my family that I know of!!

 

Turbulent Tuesday

Hello my name is Shari I am nickie’s   Mom. She asked me to write her blog for her today because she is very sick and has not written in quite some time. She has had a very rough few days. She went to have her liver biopsy and pet scan done in Baltimore last Wednesday and all went well with procedures themselves other than the surprise she did not want to hear? And that was that she was only getting a local  for the biopsy…. Needless to say she was not a happy girl! 

The day after  that she started feeling nauseous and crappy in her words…. she became very nauseated  and could not keep anything down. Late Thursday evening her husband took her to the er to try and get some medications to help. They ended up admitting her to observe and wait for a bed in Baltimore and by Saturday not much had changed and no bed was available so they discharged her home  with meds hoping that would help.  Baltimore called and told us that the result of the liver biopsy showed gvhd in the liver. So unfortunately things just progressively got worse and today we came back to the er again getting more meds to help with the nausea and some antibiotics to help her temperature and some blood pressure meds to help get that lower as well, Since she was not able to keep any of her meds down for several days. We are now waiting for the helicopter to arrive to transport her to the university of Maryland where they will get the gvhd of the liver under control and then we will hopefully be back on track for the lung transplant! I was so worried  because. three days ago she was ready to call it quits and just stay home in bed . We all kept telling her you have come so far to give up now. She felt so bad she couldn’t eat or drink and had been having dry heaves for 26 to 48 without relief. I would have been discouraged too. With the support of UMD doctors and family and friends we persuaded her to give it a go and continue the fight for a lung transplant. So here we are she is ready to leave Cumberland to Baltimore on her first helicopter ride…….thank you for continued prayers… Mine have been answered ……she is on her way !!!!!!! Fly strong baby girl xo 

 

Tranquil Thursday

Today was one of those days again, I just wanted to lay around and do nothing. I am so wore out from the last three days of running around. It doesn’t seem like I did much but to me it was a lot. Monday was my birthday so we went to my moms house for a little cookout with family. Then on Tuesday I had rehab, then a dentist appointment then my mom took me to get a manicure and pedicure for my birthday present! Then on Wednesday I had an eye appointment, needed to get bloodwork. It may not seem like much but it was a lot of work and a lot of getting in and out of the car which is difficult. 

I had to go to the dentist and eye doctor to get cleared of any infection for the transplant, I still have to go to the skin doctor, that is scheduled for next week. And then the last two things that I need to do are a PET Scan and a liver biopsy which are scheduled for next Wednesday! I need to do the PET Scan just to make sure that I am clear of any cancer and the Liver biopsy needs to be done to just make sure that my liver is healthy enough to deal with all the medications that I will have to be on after the transplant. Once these last three things are completed I will then be able to be put on the list!!! I’m having some mixed emotions about it, I am obviously very excited that the time is finally coming but I am also really scared and nervous about it being so near. I never thought that this moment would ever come and here it is so close. The day that I get the call that I am officially on the list, I am not sure how I am going to feel. Right now I kind of feel like its not going to happen and that I will do these last tests and then I will be told that there are more things that need to be done and I will have to keep waiting……. hopefully that doesn’t happen, but I am so used to having set backs that thats really all I expect now. 

I started a new antibiotic in place of one of the other ones that I was on because it was making me really sick and not able to eat. I was losing a lot of weight and that is not something that I can be doing right now. But, unfortunately the new antibiotic is making me just as sick as the old one was.They are both very specialized so there aren’t many options to replace them, I think I am going to have to just deal with feeling sick, which is not something that I want to do. It is bad enough that I can’t enjoy life because of my breathing, but now I have the added problem of feeling nauseous and just feeling bad most of the time. It makes it hard because everyone tells me well you still have to eat, just leave things by you and take small bites here and there and take small sips of smoothies or shakes throughout the day so you can get some calories. But, its not that easy and no one understands that. When you feel like your going to throw up you don’t want to even think about eating or drinking. I know that I have to eat and drink but I just can’t. Even when I try, I usually end up getting sick and so its pretty much a waste. I just hope that one day I can enjoy food again!!

 

Slider Sunday

I was not expecting to have it be a whole week before I posted another blog, but this week just went by so fast. My dad and his wife came to visit on Monday and stayed for the week, they left on Friday. It was so good to have them here, I wish that they lived closer so we could see each other more often. We didn’t do anything to crazy while he was here so hopefully he wasn’t bored! We only went out of the house to go to my pulmonary rehab and then he went to get food a couple times. But, it was just nice to spend some time with them even if it was just hanging out watching tv! 

We did celebrate my birthday on Friday before he left since he won’t be here tomorrow on my actual birthday. He got me some beautiful roses and three different cakes because he didn’t know which one I would feel like! I will be eating cake for the next week lol! But, they are all delicious! Thank You Dad!

I am very wore out even though we didn’t do anything so yesterday I just layed around all day and then mustered up enough energy to go to the last home game of the Western Maryland Stags in the evening! They lost again but, like the last time it was just fun to get to see some family!!

Today is turning out to be another lazy day, but its okay! This is the way I like it, just some quality time with Josh, Diesel and Layla! But, this is a big day for Josh….. he starts his job as a pitching and first base coach for Potomac State College. The first team meeting is this evening and then practice starts next week. This is the local community college where he attended his first two years of college as a pitcher. He has been dreaming of becoming a college coach and this is the first step in that dream! I am so proud of him for making it happen with all his hard work and dedication. I can’t wait until I am healthy enough to go and cheer him on! I know that it is going to be hard because he will have a pretty busy schedule with his full time job and this coaching job and I won’t get to see him nearly as much I would like but I am so happy for him that his dreams are coming true, I know he is so excited and I am such a proud wife, I just want to scream to the world how proud I am and how excited I am for him! 

Me “trying” to blow out my candles on one of my cakes! Dad had to help me out a little bit!

My dad and I

Sleepy Sunday

This weekend was anther great weekend of quality time with my husband and dogs just hanging out and we went to another Stags game! Although they lost, it was still fun, I love going just to get to spend some time with my sister, nieces and nephew. We of course took tons of pictures go Si again…both of our phones have so many pictures but they are all of either our dogs or of Messiah lol! Were addicted!! Also, the weather was perfect for me this weekend, it wasn’t too hot but it wasn’t too cold, so I was able to be outside and not struggle because of the humidity and that was such a good feeling, the humidity this summer has been unbearable.  

I am also very excited because my daddy and his wife are coming to visit tomorrow!!! He lives about 5 hours away so I don’t get to see him as much as I would like, especially since being sick and it being so hard to travel. I love when he comes because it is so nice to be able to catch up and spend some time together, all we can do now is text when we get a chance and its just not the same. I really miss the days when he lived around here and I could see him whenever I wanted, I’m a daddy’s girl so it sucks not having him close. I am very thankful for his wife Lovel though, I am so happy that she is finally here with him and that I can at least not feel so bad knowing he at least has her to come home to each night. (if your reading this dad—and your million cats of course lol)!

I wanted to share with everyone a song that has come to be an important and very inspirational song in my life, I heard this song a few weeks ago and as soon as I heard I related to it so much. Every time that I start to feel down or frustrated or anxious about my life or what I am going through I just play this song and it gets me going again and makes me feel a strength within me that I did’t think I had left. I am also planning on asking the doctors to play this song as they are putting me under when I get my transplant, I really think that it will help me in that battle to survive.  The song is called Fight Song by Rachel Platten. 

Tough Tuesday

I haven’t posted in awhile, I have been busy the last couple days. This weekend though I was able to just relax and watch movies and tv with my husband and my two dogs! It was so nice to be able to do that! Saturday evening though we did venture out and go to the Western Maryland Stags football game to watch my sisters boyfriend play. The Stags are a semi-pro team that we have here in Cumberland. We had a good time, we were able to spend some time with my sister and my nieces and my baby nephew! Josh was excited because it was the first time that our nephew really let him hold him without crying!! He really loved it when Josh put him up on his shoulders and took him down closer to the field! 

Monday I had to make a trip to Baltimore with my mom for a doctors appointment to have a CT Scan done to check on the progress of my infection. It was a very long day, I had to be ready by 7:30am, which is way too early for me! I am not a morning person, I usually sleep until around 12 or so everyday! We didn’t get home until around around 3 and then I went with my mom to a dinner with a group of her friends and the ladies that she co-owns The Barn with because Josh had some plans and mom and him don’t like me to be alone….. It was nice to get to see all of them though, I haven’t seen them in a while. For those of you wondering, The Barn is a store that sells “primitive and needful things” in Ridgeley WV, so if your ever near there stop by and check it out! I was meaning to write my blog yesterday but I didn’t get home from dinner until around 8:30 and I was so tired that I layer on the couch and fell asleep. It was nice to get to spend some quality time with my mom, I definitely miss the days that we used to take road trips that didn’t have to do with doctors! Hopefully in the near future we will be able to do that again!

Today was a tough day too, I had to go to pulmonary rehab, which I know that I have to do to stay strong, but I really hate going. It is just so hard to get there and then its hard just doing the things that I have to do while I am there. I have to do stretching, lift weights and walk. Now, I only have to lift 1 pound weights which doesn’t seem like much, but for me, it really is because even lifting my arms alone is taxing and now i am adding another pound. I always try and get my mom to forget that I have rehab, but it never works! A girls gotta try though right??!! I guess one day I will thank her for making me go. Now I am just resting and getting ready to go to bed super early because I am beat!!

I also want to start adding some pictures to my blog to start introducing you to my biggest supporters, my family and to special things and places in my life. Today I’m putting up a picture of my husband and I from last summer, my two fur babies and my nephew at the football game!

my husband and I late last summer.

My two fur babies…Diesel and Layla

My nephew watching his daddy play football

Tell All Thursday

Well, today wasn’t the best of days. The heat really bothered me and made it very difficult to get to my moms car to go to her work and I wasn’t able to get to therapy because it was way to taxing. I hate that it’s so much work to do just the littlest things like walking from my back door to the car. I can’t wait for the day that I can finally do it on my own and not have to “recover” afterwords. I also was not feeling the greatest, again. I was nauseous and on my way home from my moms work I got sick. That is one of the least fun things lol. But, I am home and resting now and was able to eat a little bit of dinner that my mom picked me up on the way home. But, dinner was a complete fiasco for her… I was only feeling like the pasta salad on Ruby Tuesdays salad bar so we went there to get it to go. When I used to get it in Morgantown they would just give me a little soup container and charge me like $3 for it, well here they told my mom that she had to buy the whole salad bar for $9.50 so she was like okay whatever and then she had nowhere to put the two containers they gave her while she was filling them and she had to try to hold on to her phone and her wallet at the same time!! If only I could have seen it, I only heard from her! But, we are used to it, everything we do in our family seems to be just a littler more work and a little more funny than others!!

On Tuesday I was able to go talk to a gentleman that has undergone a double lung transplant and at first I was kind of nervous to talk to him because I deep down was scared of what I was going to hear. But, I am really glad that I was able to hear what he had to say because he actually calmed my mind a lot. He told me all the things he had to deal with through recovery and I was thinking to myself the whole time “Oh, well, I have already been through that and it was fine.” So, the recovery isn’t really scaring me anymore as far as what to expect, it’s just scary having to go through some of those things again. Some things he said that he went through are getting his strength back, not being able to eat or drink until he passed the swallow test and having a feeding tube, having a catheter, and just being hooked up to so many things and then having to have so many tests done all the time and having to take so much medication. But, like I said I have been through all that so it just sucks knowing that I have to go through that again.The only new thing that I will have to experience that I am really nervous about as far as the pain of it is having chest tubes after the surgery. I think they said that there will be two on each side and I just get eeked out thinking about it and what it’s going to feel like, especially when I have to get up and walk and wash up and get dressed.  I think the hardest thing of all that is not being able to eat and drink. I remember the last time I was in the hospital I wasn’t allowed to and all I did was sit there and think of food lol. All I wanted was a cookies and cream milkshake! On the day that I was allowed to start eating but was still restricted to thick liquids my amazing nurse went and got me a milkshake and it made my month!! The second hardest thing was then having to be on thickened liquids for i think it was almost four months, it was miserable. Everything I drank I had to put this syrupy stuff in it that made it thicker and even though it didn’t change the taste just the consistency made me sick. 

I asked him what it was like for him when he received the call because I’m wondering how I am going to act. I’m thinking in my head now that I am going to start crying and “trying” to scream and be uncontrollable with excited but I’m not so sure. I may react like he did when the time comes. He said that he just sat in shock for about 10 minutes, and really when I finally get the call, I may be the same way because I feel like it won’t be true, like someone is just playing a joke on me. To be honest, I feel like I’m never going to get to experience being able to breathe again and that my day will never come. 

One big thing that I asked him was what it was like when he woke up from surgery, was he able to breathe and did it take time. He actually surprised me in saying that when they took the breathing tube out he was able to take a deep breath! That made me so happy! To know that it’s not something that I will go through all this and then have to wait to feel any different made me smile!! He said that he is the same way that I am thinking that I am going to be, even after surgery when I know that I can breathe again, I feel like I’m still going to be so scared that I’m not going to be able to breathe, that with everything I do I will pause and have that anxious feeling like I do now. I’m not sure how or if I will get over that. The feeling of suffocating or drowning is one of the worst feelings in the world and its something that I really don’t know if I will ever forget the feeling of and it will probably always scare me. 

It seems crazy but since dealing with this disease I have become scared of the stupidest things. When I see people underwater on tv or in person, I tense up and start to feel anxious, when I see people being choked I get anxious or even when I see people being enclosed in a small area I get very anxious. This is all my fears of not being able to breathe. So, you can only imagine how I am when I have to be in small space. I have to leave my bathroom door open at my house or else I will freak out lol. My poor husband, between me with my anxiety issues and my oldest dog Diesel with his anxiety issues (we have a doggie diaper for him lol), I don’t know how he does it!! I have to give a shout out to him for all he does and puts up with—-Love You Joshua!! 

Manic Monday…

So, I was feeling up to going to a couple stores last week with my mom and I ended up buying a couple outfits since I don’t have many clothes that fit me good. Well, this morning I went to get dressed in the new skirt that i bought, because I wanted to wear something nice to my moms birthday cook-out that was this evening (Happy Birthday Mom!!), I went to put the skirt on and the security tag was still on it……  ugh! So my mom decided to look at the other clothes that I bought and there was still a tag on the shorts too!! Un real! Now my mom has to take them back to the store and get the tags taken off. I ended up finding something else to wear but I really wish I could of wore my new skirt I was all excited about! 

I then got a call from my doctor saying that she wanted to me add two more medications to my already way too long list. I think I am up to 15 pills a day or so. When I take my medications each day, its pretty much a meal for me lol! My doctor also said that they had a meeting about me today and that I would be put on the list but I just needed to get a few more things done before they could, I should be getting the checklist in the next couple of days! She also talked to me and my mom again about the reality of the transplant, which made the conversation turn sad. She said that I am a very high risk surgery and that they will be expecting complications, even though she hopes none will happen and that I could get infections very easily that could be fatal and I could go into liver or kidney failure amongst many other things. But, if I do make it through the recovery that I could live close to five years but there is the chance that its less time but also the chance that its more time. So lets just pray that I can continue to beat the odds like I have been and I can make it longer!! If not though, I guess I can consider myself lucky in a way, I get the chance to say goodbye to my loved ones and make sure that I say all that I want to say to them and I can live the rest of the life that I am given with no regrets. We all think we are going to make it 100 and that we are invincible, but the reality is were not and I hope that I can reach out and touch just one person with my story and they will start living there life in a more positive way and I guess you could say, live like they were dying. 

My moms cook-out was a lot of fun, it was great getting to see family and friends and getting out of the house a little bit. I got to spend some more time with my baby nephew, even though he was running around the whole time, I still got to see him smile and laugh. That always makes my day!!