Newbie and 21

[Krista]

I know I've posted something like this similair on the site under Aplastic Anemia, but I haven't had a whole lot of luck with reply's. Perhaps you guys are just better with the formal side of things, the things with concrete right and wrong answers. I am 21 and was diagnosed with aplastic anemia a year ago next month. So the anniversary is approaching, and I've just read statistics that 78% of ATG w/cyclosporine patients relapse. I don't know exactly what this means, since it doesn't have a "within five years" or anything attached. I'm concerned. Anxious. Worried. A little depressed. About making plans for the future, about getting my first job and paying my first school loans and my new health insurance all at once, about moving closer to my family "just in case." I feel like my whole life is lived right now "just in case." Have a suitcase packed "just in case," a list of things I'd like to do before I die "just in case," rethink every bruise and sneeze "just in case," write letters to my teachers explaining my life "just in case." I know adults pity me a little because I'm so young, but others just shrug it off. I have some friends that understand, and others that just change the subject. I get so angry because I still want all the same things, still want to work really hard and stay up late on homework and prove my professionalism like everyone else (I go to art school with a really intense program) but, at the same time, I'm not the same person I once was, and I can't always keep up with everyone else. I want to. because I know the kids that can't or won't work up to the school's high standards, and we are taught not to respect them. I don't want to be that person. I've worked really hard the past two years to not be that person. And last year my teachers treated me like I had suddenly stopped caring about class, and that I wasn't worth bothering with anymore. No matter how hard I worked. No matter that I still had a B+ average, and I was in the hospital or in quarantine for half of the semester. I have a new start, but I'm afraid I've internalized their attitude. I don't know what options are left open to me now. I want to be a graphic designer. And now I have to miss so much class I don't think I'd ever be able to work to the strict deadlines. I'm afraid my teachers will lose respect for me all over again. Thanks for letting me rant, its been a really long week. I swear I still have a sense of humor, just not tonight.

[Jbsx19]

Krista,

I just wanted to say that I DO understand how you feel. I've been there,too. I was diagnosed in May 2003 had ATG/Cyclosporine in June 2003 and have been in complete remission ever since. Stopped all medications in Nov of 2004. So I've been "back to normal" for 3 years. It's really a choice and I choose to live my life as before AA came calling. I don't think about the what if's. No..I don't know what is in the future..how long will the remission last...etc..etc..etc..I don't define myself by the AA..that's my choice. I know that other people don't get it..you look fine, you seem fine and most people don't even know what your bone marrow does or blood count numbers, etc..You don't say what your counts are now or if you are in remission..Death is not something you should be concentrating on ,for sure. You will have plenty of treatment options before that becomes a concern. A positive attitude and destressing yourself will help tremendously. Stress suppresses the immune system. Take a deep breath,try to live your best life,and be hopeful and positive.Take your power back over this and be strong.Feel free to email me at Jbsx19@aol.com and I'll give you my number if you feel like talking.Hope that I've helped in some small way.
Hang in there.... Judi

[Neil Cuadra]

Originally Posted by Krista

I know adults pity me a little because I'm so young, but others just shrug it off.

Your comment brought back a memory for me. It was the first time my wife (diagnosed with AA) and I had attended an AA&MDSIF Patient Conference and I was in a discussion group for spouses of patients. Many were in their 60s or older, while my wife was 41. We each told our family story, and I felt sorry for people who had been planning their retirements only to have all their plans thrown up in the air by a life-threatening diagnosis (MDS for most of them). There were few treatment options for many of them at the time, other than transfusions and palliative care of symptoms.

I felt that my wife and I were better off than these older people, since we had time to study our options, take a "wait and see" approach, and the advantage that my wife's younger age and otherwise good health gave her more treatment choices with fewer risks. So I was rather surprised when person after person told me they felt the most sorry for my wife and me. The interruption in our lives was hitting us at the age when we were busy raising children, working, being active in our community, etc. According to them, it was the worst time to get a diagnosis like this.

I see the same thing from the other side when I meet college-age patients like you, Krista. In 2007, there are new treatments that were not available before, and your age gives you the most options and the best prognosis. At the same time, I know it must be frustrating trying to go to school with the ever-present threat that you'll be unable to keep it up. We all live with that "what if?" worry, but when you are trying to finish your education and start a career, long-term planning may seem next to impossible.

In my experience, it's OK to make both short-term plans and long-term plans, rather than feel adrift, as long as you give yourself the flexibility to change your plans as the situation changes. Family, friends, employers, and schools are likely to be supportive when the situation is out of your control, especially if you keep them informed, and that makes a big difference. "Roll with the punches" may seem like trivial advice, but it really is part of how my wife and I have been able to cope.

[katherineann59]

Hi Krista,
Like everyone who reads these forums, I can say I do understand many of your worries and concerns. A year ago in August, I was diagnosed with MDS Intermediate 2. Once I received the diagnosis, I got on the computer and looked at as much information as I could and found most of all of it to mention life expectancy estimates. This was truly depressing. Fortunately for me, though, I have had previous experience with the specter of a "terminal disease." In 1986, I was diagnosed with PKD, a disease of the kidneys for which there is no cure. At the time, I was raising young children alone - I had divorced in 1989 - and had the unfortunate experience of a doctor announcing the disease and telling me it was incurable and I would "die young." A previous experience, January 15, 1990, I suffered a ruptured cerebral anneurysm which left me in the hospital for 2 months during which time I had to learn to walk, talk, and cope with a loss of short-term memory. Even though my docs told my family that I would not survive this incident and that even if I did, I would not be able to lead a normal life, I did survive and with virtually no residual side effects. In fact, my children are grown, I have returned to school and completed 3 additional degrees, and even have even lived to meet my new grandbaby. The reason I am relating this information to you is that there is HOPE! I am not any kind of a super person with extraordinary abilities. I am just like anyone else. The only thing I can offer you is my strategies for staying positive and living my life to the best of my abilities. Things have changed over the years. With a new diagnosis or the ramifications of one of the diseases, I try to be as kind to myself and I can. I used to be a very driven person who was much harder on myself than probably anyone I associated with. I had to learn how to be kind to myself and modify my expectations for myself. This doesn't mean trading your dreams for what you want to accomplish. It simply means allowing yourself the luxury of putting your health first. I just had to apply for "family medical leave" to protect my job and, more importantly, my insurance. It wasn't easy for me to admit to my employer that I would need to take extra time off from my job to have treatments, cope with infections, or just take a day to rest. I was always the person who who give 120% and push myself to the farthest limit - not any more. I still give my best to everything I do, but I do this with the understanding that my body cannot do the same things it could a couple of years ago, a month ago or even yesterday - but that's OK! You are struggling to maintain when your body is fighting a disease nobody can really understand unless they have lived with it. My friends, family and co-workers cannot believe I have 2 "terminal" diseases. "You look so healthy and you are always smiling," they tell me. Although this type of statement is not inaccurate, they don't see me when I give myself my "pitty party" time. When things are getting really rough - this happens mostly when I am fighting some kind of infection or my blood counts are really low" I give myself a maximum of 24 hours to stay in bed and cry my eyes out. If I'm feeling sad and can't bring on the tears, I'll watch a movie that I know will open the flood gates. This brings on an indescribable sense of relief. Once I've cried and cried, I tell myself it's time to close the gates and get on with things. This works wonderfully for me. Maybe you could find a way to release all of this pent-up sadness, insecurity about the future, depression about the diagnosis, etc that will work for you. I also have a small band of folks who have genuine empathy, broad shoulders and an understanding of what I am going through from a medical standpoint - my treatment nurses and my oncologist and her staff. You might want to try expressing some of your thoughts, concerns and fears to them. My treatment staff has been awesome! I hope this helps. You can write me at any time. Just living with this disease is a testament to your fortitude and strength of character. Give yourself a hug and don't be shy about reaching out to people and asking for the help you need. I'm still learning this one. Also, try to pat yourself on the back for all of the things you can do. Your life has changed and will never go back to the way it was. Even if you do go into remission, you will have specter of the disease always in the back of your mind. That's OK. Try and celebrate the little things and don't dispair over the losses the disease has dealt you.I also exercise when I can and feel up to it. This helps so much to alleviate stress. I can't do all of things I could before, but I try to be thankful for what I can still do. You still have life and that is a gift nobody with a chronic disease ever takes for granted. I hope this helps in some way.
Kathy

[Zoe's Life]

Kathy,

Thank you for your encouraging words. I know you didn't write them for me, however, they encouraged me nontheless.

Zoe

[Vernette]

Hi: While I am at the other end of life (over 80) I surely never expected such a thing to happen to me. My husband died in 2000 from Myelodysplasia - think it wasn't a shock when they tell me five years later that I have the same? No - it is not sexually transmitted (so they tell me) and there is no way I could have contracted it from him while caring for him (so they tell me). Had another shot of Aranesp today. Progress is great - no transfusions yet. Hopefully for all you younger ones, science will bring something for you that is not available now. I pray for your safety and well being.

With Blessings to you all, Vernette

[Krista]

It is so much less alienating when I can see myself in these posts, compared to when I try and describe them to those that haven't expereinced them. Its hard not to feel ashamed when people find it so difficult to understand chronic illness, like we are somehow less of a person because we can't keep up. This is primarily what makes life for me so difficult. I am not scared about my health the same way as I am scared about what life has to offer me! Our pain is NOT minor, no matter who wants us to believe it. Just because I look fine does not mean I have to pretend I am okay! I think the days I feel the worst are the days I go out of my way to look my best. Like makeup can somehow cover up my exhaustion. I have spent too many moments feeling so emotionally, physically, and socially seperate from the kids I go to school with. When I tell someone that I'm tired, trying to clue them in, to have an opportunity to be understanding, they say, "I'm tired, too" and I feel like we are talking about two diffrent planets in the solar system. Yours is tired. Mine is profound fatigue, the kind that keeps me planning my weeks in advance, each time carefully planning out which classes this week I can miss. Knowing that I am giving up friends, hobbies, and errands so that I can get my work done. I get so angry when I am asked for explanations. The explanation is the same: I am sick of you looking for reasons not to trust me! I am sick of being asked to justify my need to take care of myself! Wasn't it you that told me I had a responsibility to get rest and eat well? Other students are not granted that luxury because they do homework instead! The rule we were taught was this: there are three components to life at this school, and you can only pick two. Chose your social life and school, and not sleep. Choose sleep and your social life, and fail school. I choose sleep and school, and that requires much more of me than any other "normal" person here. If my life was free from this constant argument, my life would be better, only I can't seem to escape it. I'm so sorry for my rant, but I needed to get rid of it somehow.

When you say you can't sleep, I know you. When you say you can't focus, I know you. When you say you are exhausted in a way you can't understand, I know you very well, as though the fears you have everyday are the same as mine.

[Judithg]

Dear Krista, I want to thank you for sharing your feelings. My Son Stephon age 22 was diagnosed with AA in February 2008, then PNH last month April 2008. when I saw your age I said oh I must read what she wrote. I joined this group to learn more about my son's illness, and also to understand what he is going thru. My son barely communicates with me, I was there with him during his month's stay in the hospital and expected that when he came home that I would be there during his treatment every step of the way, but to my surprise he has shut me out. Maybe my nurturing upsets him, but as a mother I would jump off a cliff for him. I'm not trying to make his illness about me, I just want to be here for him. And I feel he won't let me. Hopefully his resistence to make me a part of his treatment will pass. Thanks again for sharing your feelings. As a matter of Fact I appreciate everyone here, I have been surfing thru and learning how to actually use this site. I'm getting there.