Lone Cyprus

Lone Cyprus

Tuesday, November 17, 2009


A few weeks ago I had a friend ask me if I ever just get mad about being sick. He thought I seemed to be dealing with it pretty well and was mostly positive. In general I don’t get mad very easily. It takes a lot to make me angry and even more to make me stay angry for any amount of time. In the past, I’ve just been able to let things go easily. On a regular basis over the past few months I’ve had people tell me how inspirational or encouraging I am because I’m staying positive and my spirits seem to be high. Truthfully, up until the last couple weeks I would say that I have, indeed been in good spirits. What I have to say isn’t all that inspirational these days. What I really want to say is this: I’m angry. I’m mad. I’m pissed. I’m irate. I’m livid and every other word you can think to insert here.

I’m mad that I can’t breathe. I’m mad that my hands hurt. I’m mad that I have to take all these pills everyday when I’ve never been comfortable taking meds. I’m mad that I can’t exercise. I’m mad that I can’t even walk through wal mart because by the time I park and get to the door I want to rest. I’m mad that my face is changing so much and my lips are gone and my skin is red. I’m mad that there’s nothing I can do to change any of this.

It makes me so angry that I’m 31, disabled and forced to live with my parents again. I’m angry that I can’t work. I’m angry that it makes me feel unproductive and at times, useless to be without at job. I’m angry that my future no longer holds the same hope it did just a year ago. I’m angry that I’ll never have my own child. I’m angry that the chance of falling in love again has become so small. I’m especially angry that illness has made me an automatic dismissal both by men and by new friendships. I’m angry that I have to search for a way to break the news to new people so THEY don’t feel uncomfortable…as if it’s easy for me.

Maybe if it were just these things I could much more easily deal with it. The problem is, though, on top of all that, I have to deal with people and their judgements and misunderstanding and careless words. That pisses me off. I am livid that any one person on this planet expects me to explain how I’m affording to or able to go to concerts or on roadtrips or even bigger trips. And even more so, that anyone would actually accuse me of taking advantage of people in situations or for material things. First of all you clearly don’t know me and second of all get over yourself for a minute and consider my situation. I have no real hope of living more than a couple years. While I am alive, I live with my parents and before I got sick I didn’t make a bunch of dumb decisions and get myself into a lot of debt. My bills (outside of medical ones) are few. Concerts, trips and other things have often been offered to me by people who love me and want to see me experience things that make me happy. I am not spending a lot of money on anything, as there isn’t a lot to be spent. Also, while I’m living so extravagantly and taking advantage of everyone, I also struggle to breathe and feel normal constantly. My chest is tight and I have skip doing lots of things I’d love to do. Asking people to help me all the time sucks. I hate it. So I say this to you, I’ll trade ya. I’ll take the job and the responsibility…and along with it, I’ll take a future and my dreams back and a more normal daily existence.

Obviously that can’t happen. And yes, I admit, I’m angry about it. But if I stay angry, I won’t enjoy what I do have. It might not be a lot or for long, but it’s what I’ve been given. I know I have to make the most of it to be happy. So I wrote this in an effort to let some of this go. It’s difficult for me not to worry about what people think, but I’m making every effort to do just that. If you’re not on my side, if you’re not gonna walk with me through this, then I’m not gonna spend anymore time worried about what you think or say.

Wednesday, November 4, 2009

Long time, no update. Sorry.

I haven't felt like writing lately. Or maybe the truth is, everything I've wanted to write hasn't felt right to share. Sometimes, everyone doesn't need to know everything. I feel like it's a good thing to keep some things for just me and maybe a select few who are close. This doesn't mean there's been nothing going on though. I do have some medical updates for those concerned and a couple other things I'd like to share too.

I began taking Cellcept about a month ago now. After taking it for only 4 days, I began developing mouthsores. I contacted my doctor and she recommended I stop taking it until the sores healed. The did heal after several days and at my doctor's request began taking half the dose for a few weeks to sort of ease my body into taking it. I have been taking the full dose for almost a week with no problems and no side effects at all. So far so good...

I also went to see a pulmonologist last week at Vanderbilt. Everytime I think about this visit, I just can't believe how blessed I've been with finding amazing doctors who are caring and thorough. I have heard some pretty awful stories about some people who see doctors who don't listen or treat them with much respect. Thankfully, I haven't had ANY experiences like that. The pulmonologist addressed my pulmonary hypertension. He told me mine is mild but he did want to put me on some medication that would also help with Reynaud's (my blue, numb fingers in the cold). I'll follow up with both him and my rheumatologist in January.

I've had this increasing desire to share with my friends and family and supporters what has become of the money that was so kindly given and worked so hard for during the fundraising for the transplant. Because I wasn't able to get the transplant, the hospital paid all of the bills I racked up with tests and procedures in that first week with the money we had provided them. The remaining money was put back into the fundraising account here locally. This account is managed by a few of my family members and the remaining money will be used for medical bills (MD visits, medicines, tests, procedures, emergency care, etc). Because I am not insured, this money will basically serve as my insurance money over the next year and a half. I will hopefully be eligible for Medicare in the spring of 2011. I realize I am not REQUIRED to explain myself, however, the hard work and giving hearts of so many people make me realize the responsibility required of me and the respect I want to show. Thank you. Thank you. Thank you.

I'm doing well. Life's funny. It's not easy all the time but I can't even explain how blessed I am. I got to spend a much needed weekend with my best friends in Gatlinburg and I'll leave in just a few days to go to Florida with my dad. The holidays with my family are just around the corner and I can't remember the last time I wanted to see winter so badly. Probably never. There are so many happy times to be had and warm memories to make!