May 25, 2005

Going to florida no matter what!

Late last week my mother in law offered to pay for us to be able to come to florida for Memorial day weekend-this is also the 2nd anniversary of my father-in-laws passing. We are so excited and anxious to go even though it will only be for a weekend and we are driving it is about a 16 hour drive, my husband was afraid my health could not take it. But I told him I have been feeling fine for the most part and I WANT to go so bad.

This morning I woke up with joint pain and stiffness all over and a temp of 100.6. Now bear in mind for a normal person, that is not too high, most people with lupus however normal body temp is 97.7 so that is pretty high for me. I have not even let my husband touch me tonite because he will know I have a fever and then he will want to call the whole thing off!

My mother-in-law is not wanting to spend this anniversary alone and I am not going to let her no matter what! I am so aggravated at my body though right now and I know that is not realistic but sometimes living with a chronic illness your emotions are not realistic. I was hoping to get to feel great and show his mom how good I am doing and now I am scared. I have spent so much time tonite worrying about the fever. I have a dr appointment in the morning so I am going to ask for a dose of steroids to at least make me able to make the trip.

I know I have said before that I will never take them again but another lesson of lupus-never say never. Today at work my boss asked if I was ok because she said I am starting to not look so good again. I told her I was fine just up too late. I feel like such a fake! I am not fine but if I tell the truth I will not be able to go to florida and my employer will start treating me like I am disabled again after I am finally getting some respect back.

I HATE LUPUS, I HATE WHAT IT HAS DONE TO MY LIFE, MY FAMILY and all of the things my life used to be.

I am Buddhist and I can not figure out what life lesson I am supposed to learn from this. My dhamma instructor says patience and I say I have been and she said no you are supposed to learn patience. LOL Ok I have never been good at that so maybe she is right. But it is so hard and it is not fair. I am trying to get better and it seems the more I try the harder it gets.

Then a very well meaning friend starts telling me a gluten free diet will cure me, I have read this theory but I do not put alot of stock into it, but maybe I will try it and at least see if it helps. It can not hurt I guess.

Anyway I will not be updating until probaly Tuesday night after we return, everyone have a safe and healthy Memorial day weekend.

Keep smiling and namaste :)

Posted by Lisa on May 25, 2005 6:53 PM

Comments

Lisa - Your dhamma instructor is right on the money. Unfortunately, it is not the kind of thing that those eight letters in the word "patience" are really even within your grasp yet. This isn't meant to be condenscending. It's just the ways of the Universe so that we can get thru our 30's and get our kids to a point where they can be on their own. All things come in time. Don't try to search for it. It will find you when the time is right and a kind of grace will overwhelm you. But it is not the kind of thing one "gets" thru reading the right things, or "doing" the right things. It comes very softly one day when you are not even looking. When the time is right for you. Until then, try to form a love/hate relationship with steroids. Use sparingly when absolutely necessary; and wean properly and stay off inbetween times. They are a double edged sword. Can give one a "false" sense of well being, can even be a false "High", which can be fatal for many. For they overdue, don't give the lupus the respect it needs, and can go out in a blast. But steroids can also be life saving when in acute flare ups when organ failure is a risk. Like anything, it is a hard, tight rope to walk. And we must never say never, but go with the flow, and always not regret any decisions made in the past, nor measure any future decisions made by previous assumptions. As each day is a new day. With a new Lisa getting out of bed, with a totally different view of life and this crazy world. Having the safety net of steroids for this long weekend is not the same as taking huge doses every day for decades. There is a HUGE difference. Love yourself enough to give you and your Mother-in-law the support you both need this weekend by being together with whatever meds you need for the next five days. And then when you get back, you and your docs will still be there to make decisions for the next five hours, five days, five weeks, and five years. One day at a time, one hour at a time, whatever you have to do to accept that this roller coaster of Lupieland is forever changing, we forever changing with it, and having to deal with what hand we are dealt on a daily basis. Who knows? You may be flaring up right prior to a three year, total remission of the disease. So don't assume the negative. It's happened to me that way if it's any help. But keep a thermometer near by at all times. Denial is a hard habit to kick, and we Type A's with lupus are very stubborn people. I know. Believe me. I've been out waving a flag, thinking this recent flare up for me was over and history for me. I wish. When I just took my temp, I realized that I hadn't done so in four days ( subconsicously on purpose, duh........) I wanted to believe I wasn't running a fever. So I let myself "think" the other way to get four days off for optimism. But I wasn't able to walk to my mailbox.Slept a lot. And had to use sugar or chocolate to get myself "up" to do anything. Now there's a big clue. And then "remembering" to actually take my temperature. Why should the queen of denial be so surprised that she was still running a low grade fever???? Aw shucks...Did I really forget to take my temp for four days????? Blame it on cognitive fog!!!But it was nice to think postive and make plans during those four days. And I shall do those things when I'm better. So I didn't do any harm. My dreams are just a little postponed. So best wishes from Cleopatra herself!!!!!!! Hugs and have a great weekend.

Posted by: CathVT at May 25, 2005 7:51 PM