Monday, September 10, 2012

You have "depressing" friends

I was talking to my boyfriend the other day about my friends. I have had so many friends having a difficult time this year it has been a little overwhelming at times. I have struggled this year and it has made me realize, even more than I have in years past, that my post transplant experience (up until this year) has been amazing and I have been amazingly blessed.

It is odd to me how so many of my friends that are post transplant have struggled with chronic rejection issues this year - or just an increase in health problems overall. I have had friends near death that have fortunately managed to recover. I have had friends that ended up in the hospital at the same time I was in the hospital early this year. I was lucky enough to make it home, while they were not. Quite frankly it sucks. I was telling my boyfriend about how I hated going online sometimes because I have so many friends online that have health problems like me, and how unpredictable those health issues can be. It is like a crap shoot sometimes when I go online. Sometimes I just hold my breath hoping I don't see a death notice of any kind. I was running down a list of friends that were struggling and how lucky it made me feel that even though I was having issues I was recovering, coping and my body was adjusting to the changes. I am still able to pursue my goals and dreams and even though I am having to make some small changes here and there everything seems to be working out.

It hit me in my conversation with him how not "normal" my relationships are - how not normal my life is. He just looked at me as I finished rattling off my list of sick friends and how I wanted him to go with my to visit a friend that was extremely sick at the time. He looked at me and said ok I will go, but holy cow you have some depressing friends. To some that comment may seem offensive, but I know what he meant. He meant the situations that my friends are in. The fact that I have friends that are dying or struggling to survive, and that it isn't just one friend but a whole list of people that I am worried about. It is not only a lot, but it is something that most people my age don't have to deal with let alone to the same degree. My boyfriend hasn't ever had friends his age "die off." In fact I know people twice my age that haven't lost as many friends as I have in just the past 5 years.

It is sometimes just an eye opener. I sit and look at my emails from friends all over the country and world and all of my closest friends just seem to not be around anymore. I mean heck I have made a fb friend list and labeled it deceased. I can't bring myself to delete them because seeing their pictures and reading everyone's thought and messages to them makes me feel better sometimes, almost like they are still around. I have about 20 people on that list, and that isn't even all of them. There are things about having CF that suck, there are things about everyone's lives that suck, but I can say that despite all the health struggles the hardest part is still losing people. I remember when I was younger and I decided I didn't want to make friends with anyone with CF anymore because it hurt to much. I went years without meeting or talking to other people with CF. Then I got sick and I needed support from people who understood, now here I am post transplant 5 years and it is starting to become obvious to me again - having CF and now transplant hurts. I still have my friends and want to keep them, but it has made me bitter in a way. I want to look at people that complain about their health or how difficult their lives are smack them and tell them they don't know what hard is. I sometimes just want to call up my friends and talk for a few minutes, I have even considered calling my friends old numbers to see if anyone answers or if I get their voice mail message. I just want to hear their voices again. Then there are times that I would trade anything just to have them back for a few minutes. I would give up a piece of my health just to give them a little more time.

Then that leads me to things like this. Lying in bed thinking ... wishing they were here to talk too and then crying because they aren't and I won't get to hear their voice again any time soon. Dying is very much an affair for the living. The dead they are rejoicing on the other side - kicked back enjoying all the ice cream and cookies they can handle, while we sit here wishing they would stop stuffing their faces and pay us a visit. Then if they do pay us a visit, that we are able to get the message and know for sure that it is from them.

.... but when it comes down to it I wouldn't trade my "depressing" friends for anything because there comes a point in time that everyone of us will be someone's depressing friend because one day we will all die.

Thursday, July 26, 2012

Don't "overdo it"

So It hit me today that I find it very annoying when everyone tells me not to "overdo" it. I would like to think that with all the crap I have faced in my life I know my limitations, but apparently the majority of people don't agree with my assessment of what I do and don't know about my abilities.

I guess I look at it this way - if I never push myself how will I truly know what my limitations are AND leave me alone I am an adult I can make my own decisions lol. At the beginning of the year I felt that exercising would be the best thing for me to help maintain what lung function I had at the beginning of this whole "chronic rejection" debacle. I began working toward my goal of running (really any distance since I hate running). I did well considering all the things working against me, then I messed my knee up and took some time resting that up. I was still working out but I wasn't running cause it was painful. Then about 2 weeks after I had started with the running I went to the doc and realized I had lost about 10 lbs since I started running. We (myself and the docs) realized that my body was really working a lot harder to breathe now so that contributed to my weight loss. I took some time off and was told to resume but stick with walking versus running. I have done that when I have gone to the gym, but do believe that I will be attempting a little bit of "trotting" again soon.

Now the problem that everyone is seeming to feel the need to make sure I don't "overdo it"with is working and school. Nevermind the fact that I took the summer off school in order to recoup from the multiple hospital stays and the rigorous med regimen that I have had to deal with (all the med changes and multiple steroid tapers) since the beginning of the year. I have also come to the decision to quit my job and resume classes full time. I am already signed up for 4 classes and am attempting to get into a 5th for the fall semester. If I am able to get into all 5 classes and make it through the 16 weeks of torture it will make the next few semesters a cake walk for me in terms of what I need to do to graduate. I get that people don't want me to wear myself down, but it is frustrating because I want to scream I am not an invalid. I am only working. I struggled in the spring semester because I was working 35+ hours a week and attending classes 8 hours a week and then dedicating at least 12 hours a week to homework. So basically I was working a full time job (work) and part time job (school) and I was trying to maintain having a life. Then when you throw in the Chronic Rejection diagnosis, hospital stays, doctor's appointments every week I was going nuts trying to fulfill all of my obligations. I am putting in my notice within days and will finish work on August 16 or so and start classes on August 20th. I will be taking classes about 30 hours a week and probably about 15 hours of homework a week. I am freeing up about 12 hours or more of my time and I am more stable health wise. I know it may not seem like a whole ton of extra time, but I am also saving the travel time from work to school to work to home to where ever. I just wish that people could see the whole picture and not just spaz out when I say I may be taking 5 classes this semester. Oh well - I guess it is what it is. I am still going to be me - stubborn me and do what I want to do, which if possible will be to take 5 classes this semester.

Hopefully I will shut everyone up by passing all the courses with As or Bs and make it to spring semester without any serious issues.

Either way I have to do it just so I can say I wasn't overdoing it.

Wednesday, July 25, 2012

In the News

So I was contacted about 1 month or a month and a half ago about doing an interview with someone at the Florida Times Union. It was something that I was hesitant to do, but decided what could it hurt. I could get the word out about some fundraising events that we were going to be planning and I could get the word out about the importance of Organ Donation and Transplantation. I did the interview and almost crawled out of my skin when I was told they needed a picture before they would do the article. It took a few weeks to get everything set up for a picture but I will be honest the article is really nicely written and the picture was well done too.

Overall I think the article was great and I have gotten a lot of great feedback from it via coworkers, friends, and complete strangers. I just wish there was a way to make people aware of the stories of some of my other friends. I told my mom yesterday that it is moving to me the way people reach out to me when stories come out about me or my experience, but there are so many people that I know that could use the love too that I just want to say "Hey can you mention "so and so" or "so and so"," It just doesn't happen that way unfortunately.

I am humbled everyday by my experiences, pushed to do more than I do or more than I have thought possible. I am looking forward to a month from now when I am not working and only attending classes at UNF. I have struggled to maintain my attendance AND my work schedule with the increase in medical appointments and the more frequent hospital visits in the past 6 months. I made the decision that I would not be able to maintain taking care of myself the best way possible if I was working and attending classes come the end of August. I have decided to stop working for the semester and attend school full time. I am so looking forward to this, and being able to get back to what is really important (classes and exercise). I have gone to the gym so sporadically in the past year because of the lack of time and energy after doing everything I have to do. Time is ticking down, and I will be turning in my resignation in a few days and leaving August 14th. Mixed feelings but hopefully come January I will be looking for work again and rejoining the work force.

*raises glass* Here is to the next chapter of my life ... welcome to 30 and yet more (even though possibly minor) life changes :)

Thursday, July 19, 2012

Life in the middle ... of God's plan

So a few things have crossed my mind today and all of them lead me back to the idea that life really is a crap shoot. Sometimes people get lucky and seemingly get everything they need or want in life. Sometimes it seems that people get just about nothing they need or want and then there are most of us that fall in the middle somewhere.


That place where you are happy for the most part, but you have times when you want to punch someone or something. The place where you smile despite the fact that your life is a complete and utter shit storm. The place where you look around and think, "What on Earth is God thinking putting me through this?" 

One of my family members made the comment today on fb that someone had said "such and such "bad thing" was part of God's plan?" Her response was "Yeah right - How is THAT part of God's plan?" This got me thinking ... I honestly find it amusing that people will give all credit to God or Jesus when things go great, when someone is cured of a disease, is helped out of financial strain, or some other miraculous happening occurs, BUT as soon as something goes bad or seems unfair the general thought is "Where was God on that one?"

Call me crazy BUT it is the essence of a belief in God and what God stands for that must mean that God has a hand in the crappy things too. Doesn't that seem right. Just because it isn't a part of OUR plan doesn't mean it wasn't a part of his. Um I have a shitty disease - yeah it sucks but you don't find me sitting here saying ya know .. this wasn't part of God's plan ... he was looking the other way when I was conceived and ended up with the bad genes. Simply the fact that I believe in an "All Knowing - All Seeing - All Powerful - God" means that he "Knew, Saw and had the Power" to make me what I am problems and all. If someone gets hit and killed by a drunk driver - you are telling me that God didn't know - if he wasn't ready for the person to join him then the person wouldn't be joining him. Make sense. I don't know that just bothered me ... it's not a part of God's plan because it is unfair. welcome to life it is unfair doesn't mean God doesn't know what is happening. If you feel that way you need to check your beliefs again cause something is seriously askew.

Also it was reaffirmed to me how truly lucky I am. As much as I have complained this year about the crap that I have dealt with in terms of my health I am fortunate. I have had, until this year, a relatively uneventful post transplant experience. I have been able to live my life and truly enjoy it. I have been given the opportunity to forget that I have a disease and that I have a daily routine in order to maintain my health. I have been put through a bit of a ringer this year, BUT I am going to make it through. There is a young lady (probably about my age honestly) named Lauren or Lo (The Spirit of Lo) and she has honestly been dealt a crap hand. She had a lung transplant and ended up needing a second. She had her second and has been plagued with issues. She ultimately had a kidney transplant and is now facing her final days and has committed to hospice care in order to enjoy her time with family and friends in the comfort of her home. As much as the things I have dealt with suck at times, I am lucky. I WILL keep on, at least for the time being. I am not quite sure if my continuing to "go" is due to my own ignorance or denial, but I am keeping on. I feel good considering that I do have some limitations now, but I am stable. I am coping with the changes and mentally making the adjustments that I need to make. 

Life in the middle - it is challenging but rewarding. It can be a struggle but when you make it through and come out on the other side you have a sense of pride. I went the majority of my life being embarrassed or ashamed of myself because of my health problems as if I had done something to cause them. It wasn't until I had my transplant and came out on the other side healthy and doing amazingly well that I felt proud. I was no longer overwhelmed with the desire to hide my health issues. I tell people what I have been through because I am proud of where I have been and where I am going. My life has been firmly planted in the middle - but I am one of the lucky ones. I truly do have everything I need and most of what I want. Obviously everyone naturally wants more, but I have what I need. I just keep reminding myself that hey - it could be worse and at the very least I am going to live through this. I just hope that once it is over I have at least one good story to share from it. 

Where ever your life may be (the bottom, the top or the middle) I hope you enjoy it cause quite honestly you could always be dead and if you are well that was just part of God's plan....

Tuesday, July 17, 2012

The BIG 3 - Oh!

So it happened, I turned 30. I think it is funny how all the "normal" people I know keep saying, "So how does it feel to be 30?" and following it with, "Doesn't it suck." All I can think is it is pretty great to be able to say I am 30. I guess that is a huge difference between the folks that grow up expecting to live to a ripe old age, for those that can't count on reaching retirement every year you are able to celebrate is refreshing.

The weekend was great! Had a wonderful get together with friends and family, and got to relax just as I always like to try and do on my days off. I got a painting by Adam Brett ( from Paul for my birthday, and it is absolutely gorgeous. The worst part though is that I want another one and so does Paul and they aren't exactly cheap. Who knows maybe I can save up and surprise him for Christmas or something.

I have been trying to gear back up for classes to start in a little over a month. I am in the process of getting things set up because with my new found health issues I determined that it really isn't in my best interest to go to school AND work, being that right now going to school is more important to me than work I have decided to quit my job in the coming weeks. I am going to focus on classes this fall, taking at least 4 maybe 5, and then look for a part time job come January 2013. This way I can stay on pace to graduate Spring of 2014. It will be umpteen years in the making, but I think I may graduate eventually. :)

As for my medical stuff well ... it is going. I feel like every time I get ahead something happens to set me back again. My lung function has stabilized for the time being, so the Chronic Rejection seems to be under control. Unfortunately though it is an ongoing battle with my blood pressure, kidney function and   diabetes. The diabetes is getting better week by week and my A1C is lowering. Unfortunately though with any slight medication change my kidney function seems to go cray. I sometimes wish I could just go in and request a new kidney. As much as I say that joking I am kind of not. it would be nice if I could get a new kidney so I didn't have to chug water like it's going out of style and get lab work done to check my kidney function about every other day. One of my friends made the comment that she was on too much medication to be 27. My response was no joke - I am on too much to be 30. Most recently I have been taking meds for a CMV infection, but overall I am doing okay. I am stable and there are times when stable is not only acceptable but a positive thing.

A little funny haha - when you are standing at the pharmacy and you hear an old man talk about how he is at the pharmacy too much only to have the clerk call you to the register by name and ask how your week is going. It makes me laugh because the old man looked at me like I had no clue what it was like to spend time at the pharmacy when I nodded, laughed and said, " no kidding, me too."

Regardless of age - I spend too much time at the pharmacy :) but I am looking forward to the next decade and seeing how much trouble I can get into, AND how much time I can waste at the pharmacy :). So guess what 30s - you better brace yourself cause I have arrived :).

Saturday, May 5, 2012

Just when you think - you realize you probably shouldn't ...

So I have decided after the last week that I will not being saying that I am going to be able to relax this summer ever again. April 30th landed me in the ER at the transplant center with sharp stabbing back pain every time I tried to take a deep breath. I woke up feeling relatively okay, but as the day went on it became progressively worse and more obvious that I was not okay.

Turns out after an EKG, CT scan and x rays that I had a "spot on my lung" that looked like Pneumonia and a bit of Pleurisy (which is what was causing the stabbing back pain. I was admitted Monday evening for the docs to do some tests and start me on IV antibiotics so we could figure out what had happened over last weekend. I had appointments in April 26th for an x ray and breathing test and those seemed normal, so this was and still is puzzling for me that in 4 days my status changed so drastically. 

After the docs completed a bronchoscopy, for those that don't know basically a scope goes into my lungs (bronchi) cultures are taken, sometimes biopsies and the airways are visually inspected for any signs of inflammation or infection, we had to wait a few days or results. I was getting Vancomycin and Cefepime IV. Wednesday some preliminary results came back and I have CMV, Cytomegalovirus, and that is what the docs believe caused my symptoms on Monday, so they started treating me with an antiviral IV as well. I was sent home Friday morning and am now only receiving an antiviral twice a day in hopes that will kill off the virus and cause it to go dormant again. 

I am now mildly concerned that this may more largely impact my lungs than I had imagined in the beginning. I go back this coming week to have a follow up with the docs and to have another xray and breathing test I am sure. I am simply hoping that there hasn't been much damage done to my lungs. The docs warned me a few months ago, when they started treating me for Chronic Rejection, that the biggest concern would be me getting sick. If I get sick they have to keep an eye on my immune system as it will flare up and could cause the rejection to become more severe, but they wouldn't be able to increase my immune suppression right away because increasing the immune suppression could cause me to become even more sick. It is like a vicious cycle. I just hate the not knowing what is going to happen. I was just starting to balance out and become stable. Ugh ... stupid CMV ... stupid immune system.

I did get to go to the Art's Market with my best friend today which was nice. I have never been, so it was neat. It reminded me of some of the shops at Pikes Market in Seattle or under the Banyan Tree in Maui, a bunch of homemade jewelry places, clothing and a lot of organic soaps, lotions, dog foods/treats and things of that nature. I also got tarot cards read, which was interesting. Left me a little confused at first I am not going to lie, but after thinking about it I think my friend and I were able to put the pieces together once we left. I also got to paint a dog treat jar at Doing Dishes with my mom. I can't wait to pick it up next week once it is fired and complete. 

Overall a good day, I am tired after being out pretty much all day though. I feel like an old person, it is 10pm on Cinco de Mayo and I am laid up at the house using the fact that I was in the hospital all week as why I am not going out tonight for any Cinco de Mayo festivities. I am going to go out for a bit tomorrow. and I need my beauty rest. Okay primarily I want to spend some time with my dogs and I haven't seen them all week. Love my pooches.

Sunday, April 29, 2012

Taking a Deep Breath

Well I can finally say - I am able to relax. After the past few months of dealing with the changing medical "stuff", work and finishing up the semester everything is finally calming down a little.

I finished up the semester about a week ago, and by the grace of God was able to pass my Organic Chemistry class this (2nd) time around. Considering I missed every class after our Spring Break due to doctor's appointments I am taking my C and running. My other class I made an A (woo hoo!). I have decided to take the summer off in order to relax and enjoy myself a little. I don't really have much of a plan as to what I am going to do I just know it consists of whatever the heck I want to do is what I am going to do.

I just started working my modified/decreased work schedule and am already feeling better about it. A bit less stress honestly and even though the decreased income is going to bite a little I am okay with it. I am moving home with my mother for a few months so I can determine exactly how much money I will have to live off and to pay some bills off. After a few months I do believe that I will be moving in with Paul. The biggest bummer in all of that is that Paul is going to have custody of my furry munchkin while I am staying with my mother. Indie (furry munchkin) and my mom's dog Makena (her furry munchkin) do not get along. Indie will hopefully miss me, but she loves Paul and his Dogter Sara so I am sure she will have fun with him.

Beyond that I am wrapping up my annual appointments for my transplant anniversary this coming week. I have had most of the "big" testing already and am excited to say that I have been stable now for the past month. I am a bit relieved and am looking forward to meeting with the doc on Thursday to get some questions answered and to find out where we go from here.

I am also very excited about the fundraising efforts my friends, family and myself are starting. I have gone through a heaping amount of money since the beginning of the year due to all of the medication changes, increase in doctor's appointments and the work I have missed because of them, so we are trying to build up my transplant fundraising account again. I am so excited about what we have going on and that my best friend volunteered to be my chairperson. She is awesome and really has everything together to make this be a successful and FUN task.

I am starting this week thinking that I need to change my mindset, the past few months have had me on edge and beyond irritable with most everyone for no real reason, and I am wanting to just relax and enjoy the summer starting with this week. I am so thrilled and in 2 days will be celebrating my Mom's birthday and MY transplant anniversary day. I am going to be writing a follow up letter to my donor's family this week and turning that in on Thursday when I see my doctor/coordinator. I have written to them once before when I was roughly 1 year post transplant. I never heard back from them and though I have wanted to write to them again since that time I haven't because I was afraid to bring up a painful memory. I decided a few months ago I needed to write again just to let them know I am still holding strong and am still thankful everyday for
the second chance I was given because of their generosity.

I am looking forward to tomorrow and it being the start of my happy summer :) and hopefully a continued happy that will stretch through the remainder of the year!