Diary of an illness.

I began this page in order to not take up massive space on the life with lupus page. I was posting my health and thought updates on this page for anyone interested. It was my diary of an illness. Since my Lupus is currently inactive, my health has been improving. I am not currently updating this page. Any comments, questions, or thoughts are welcome.

pencil Oct. 17, 1997 : Well, I have been asked constantly for updates on my illness so here it is. Two months ago, I felt better than I had in a very long time. The doctor's thought that I might be going into remission. I did not want to get my hopes up too high. Currently, I am not in remission. My kidneys are failing, and I have pneumonia among other things. So, generally I do not feel quite myself. People ask me, why I do not just sit back and relax instead of doing all that I do. Well, the answer is that I do not want to miss out on anything! I refuse to sit at home and wait to die. This is not part of my nature. The sicker I get, the more stubborn I get. Occassionally, I do get my down moments and get very tired of always fighting...luckily I don't let myself stay in this mood :) I think the hardest thing about dealing with something like this, is not my emotions, but the emotions of my friends and loved ones. Even with the best intentions of others, I deal with this alone. I am not one to burden others with my sorrows, and really hate to see the people I care about being upset. So, I do keep it inside me. I wouldn't recommend this as the way to handle it mostly, but it is what I have to do. The plus side being, that often people forget that I am sick, and that can be a good thing. Then I am not treated differently or looked at pitifully. This is something that I wish to avoid. Well, I will keep occassional updates, and hopefully they will be more positive. In a way, this is like a diary of an illness, minus all of the gross details, I won't make anyone endure that :) I was recently told that it was unfair of me to ask anyone to ever want to get involved with me, with my future being so uncertain...actually, the wording was "with me dying". This has really effected me...more than I really knew at first. There just may be some truth in that. I have no choice but to deal with this as best as possible, but others do. I realize that this is not what most people expect of me, I am usually very positive, but it is reality. It is also good to show that it is ok to be ticked off occassionally, it's ok to get tired or cranky. They are all part of life, with or without an illness. How we deal with life's setbacks, is where our strength lies.

pencil Nov. 1, 1997 : Well, here is yet another update..WOOHOO! Well, I went for a very brief stay in the hosptial not long ago, was very exciting....sorry a brief bit of sarcasm :) I am happy to say that I am feeling MUCH better right now. I have been in a wonderful mood of late and have survived yet another quarterly Lupus attack! YA!!! So, I have been out living life as much as possible, celebrated halloween with hours upon hours of dancing and costumes and have just been having a blast. I have also realized that if people cannot accept me as a whole, illness and all, well that's too bad. It is a part of me now, and I am a package deal. I am the same person that they supposedly liked from the beginning, so if it is not something that people can deal with, then that is their problem I think. So, look out world...here I come!

pencil Nov. 23, 1997 : Well, I have been slacking on doing this...and here it is. Life is pretty good right now. I have a wee case of bronchitis but don't think it will amount to much this time...YYYAAA!!! I think I have been unfair in the past and most likely over sensitive about my illness. I admit that it is my main insecurity, and the fear of being rejected from it and abandoned...that is a hard thing to get past when one has had it happen so many times. MAJOR UPDATE!!! I am in love with life:) This is a good thing :) There is a wonderful man that makes me laugh, smile, and warms my heart and is always there for me. Another note, I have been having trouble in a relationship concerning my illness...and I am very thankful that we are past that. It is a very big pill to swallow, this illness...and he has done so more than I could ever have imagined or hoped for :) I finally have hope for an actual life and this is a wonderful gift I have been given. Thank you and luv ya! :) True friends are a rare gift indeed. As for everything else...life is pretty good, I am getting ready to move...ugh..which is not easy since I am not supposed to lift over 10 lbs...but have some wonderful friends to help me :) I love them as well :) I am very excited about the upcoming holidays and hope everyone has a joyous season :)

pencil Jan. 4, 1998 : Well, it is a new year...and it has been a wonderful one thus far. Healthwise, I am better than I have been since diagnosed and am not taking nearly as many medications as I was. This is a good thing. It sucks when you have 20 meds and some are once a day, twice a day, three times a day and etc. I hate taking pills anyway. I have been taking vitamins and minerals and herbs and the homeopathic route has done me a world of good. I think a great deal of it is accountable to my frame of mind. I am happy! This isn't from an external force, although there are some that make me even happier :) but it comes from inside. I just know that this is going to be a good year! I am enjoying life. I have wonderful friends that love me and there for me, I have a home and warmth and food and am not wanting for anything. I am meeting people from all over the world and am simply loving it. There are some truly fascinating people! I am very blessed to have them touch my life. Until the next update...HAPPY NEW YEAR!!!!!

pencil Jan. 29, 1998 : Well it has been an eventful month. My health has unfortunately taken a turn for the worse and it wasn't my fault. I was in a slight mishap that toppled the scale on my health. Still, I am surviving. I have been on a medication that makes me moody beyond belief and has many nasty side effects. I feel for the ones that are suffering through my moods. These range from happiness, to utter despair. Scary huh that a medication can cause this? I think so. If I didn't have to take this medication....I wouldn't. Still, I will survive. I always do :) Life has been quite a journey this month...not all bad either...but definetely a roller coaster. My very dear friend Mark has been there for me so very much and has not been phased by my many moods. He simply laughs them off....which depending on my mood, sometimes irritates me even more..hahaha. There have been a great deal of emotional turmoils this month to add onto all of this....Such is my life. For those people in my life (and you know who you are) that find it necessary to constantly demand more and more of me emotionally right now...BACK OFF Let it be known that I am giving all that I can give at this moment..and I am sorry if that is not good enough, but that is all there is.

pencil April 22, 1998 : Well it has been a while since I have done an update and there is so much to write. First of all, I have suffered with an eating disorder for over half of my life as well as the Lupus and I have recently went for treatment for that. It was the best thing that I have ever done in my life. During my stay at the clinic I had several infections and the doctors were concerned of my getting a Lupus flare up. So, the logical step was to do blood work to check for the antinucleate antibodies which are Lupus themselves. GUESS WHAT?!?!?! There were none present in my blood for the first time in over four years. I am OFFICIALLY in REMISSION This is the best thing that could have happened to me. I know that there is always a chance of it recurring, but as always I shall take life one moment at a time and live as full a life as possible.
With going into recovery with the eating disorder and going into remission with the Lupus I feel like I have a whole new lease on life. I plan on doing it right from now on. So, there is hope for us that have suffered from chronic illness. On a special note, there is a very special man that I need to thank. He has shown me that I can be myself and that I will still be loved. He has shown me both understanding and true compassion and love during my entire ordeal and has given me much strength in surviving both illnesses. Thank you my dear, I love you very much. You have given me much more than I could ever have hoped for and I am truly thankful to have you in my life!

pencil March 7, 1999 : Well, it has been quite some time since I have updated this. This last year has been a year of many changes. Yes, there is life after Lupus!!!! I am still in remission and my health keeps improving. It isn't instant though. A person's immune system rebuilds very slowly, so I still get the Flu, colds, infections more often than most people. Now though, I actually get better!!!! That is a new thing in my life in the last few year. I also moved to Holland and the climate suits my allergies MUCH better than in Tennessee...this is also a plus for my health. Still, I think the one contributing factor that helps more than anything, is a positive attitude. I know that Lupus could come back to my life, but I am determined to live my life as full as possible while I can. It also could not come back, but who wants to take the chance of waiting for the future to live anyway. So, life is good and we can SURVIVE!

May 29, 1999 : Well, it is a sad thing for me to write in this today. After being well for so long it seems that my personal demon has come back to haunt me once more. Last week, I began an all too familiar cycle of illness. Still, I am hoping that it is not Lupus. All that I can do is wait for the results of my bloodwork to come back and hope for the best. I am both angry and depressed about it. I don't want to go through all of that again. Just when it seemed that I finally got my life back and found happiness that it is to be snatched away from me again. I am very angry about it. I am also upset at how it effects those that love me. For some reason, I still hate to be the cause for so much worry and upset. That is just my problem though and I will have to deal with it. Also, there is a great fear now with being ill. I moved to Holland last year and luckily had experienced good health until now. Now, I am away from my family and friends and the health care team that I relied on so much. There is a great comfort in having your health care professionals know you and know how you need to be treated. I feel very alone with all of this. That is a scary thing. I do have one very special person to support me here, but still I spend a great deal of time....sick and alone. That is not fun. Actually, it is far from fun. It's miserable. Still a part of me knows that if I survived it once....I can survive it again. So, this is what it is like waiting to see if your illness has come back to you. It is time to "hurry up and wait".

pencil May 17, 2000 : I thought that I should report something back to this. I am still in remission!!!!!! I've had a few scares and my immune system is still very low. Thus, I still get sick quite a bit, but nothing as before. I moved to The Netherlands and it seems to have also improved my health. So, wish me continued luck!

pencil Aug 24, 2000 : Yet another update. I am still Lupus free!!!! Unfortunately, Lupus is the gift that keeps on giving no matter whether it is active or not. Meaning, it often brings other illnesses along with it. Such as my kidney disorder. I am just getting over a rather nasty kidney and urinary tract infection. I've had this so many times that I can pretty much diagnose myself, which pleases my new Dutch doctor immensely (NOT).
I've found it difficult seeing my Dutch doctor. I would like to believe that it isn't all doctors over here, but just this one. Unlike my previous doctors, he does not answer my questions, nor even listens to me. He is constantly trying to give me prescriptions that I am allergic to. This does not instill confidence. In The Netherlands, there is a prevailing mentality that is frustrating for me.....Wait and see! Waiting and seeing is not a good option with a serious illness. Also, I don't see why I should have to suffer needlessly for someone else's laziness.
Anyway, I am recovered from the latest kidney flair-up and hope that it doesn't knock on my door anytime soon. This way I can avoid going to see the idiot doctor that we are stuck with. I'm not being negative or angry. I'm simply frustrated with him.