Jules' Blog 2

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February 9, 2004

     I didn't go to work today. Too emotionally drained. I have been crying all weekend. I just can't believe this is happening, I can't help my Father. I feel like I have let him down, yet I know that is not true. I think I feel like I let myself down that I can't be there for him.
Last night, in the middle of the night, I got up, couldn't sleep. It must have been about 3 am or so. I just couldn't get on the internet again, my eyes burn from crying and have gone pretty blurry from all the hours I have been surfing. I wandered around my house not knowing what to do. I went outside in my thick robe and just breathed in the cold air. The stars were so bright and sparkling. I thought while looking up in the night sky, how insignificant I felt under all those stars and that amazing galaxy. I realized that I felt totally alone. It is a feeling that is indescribable, feeling totally alone. I wouldn't wish that on anyone. Right now I do not feel God is with me, I am a bit angry and confused, very confused. It is going to take some time for me to sort all this out, I can't seem to wrap my head around this. Maybe I don't have to just yet. Is it ok that I don't feel God right now? Is it ok that I am angry? confused? and yes, very, very sad.
     I will have to be patient with myself and let myself grieve and do whatever it is that I need to do. I don't know what that is yet. But, I am sure going to find out. I have a very inquisitive mind and also stubborn. Because, dammit, I am not ready to go yet. I still have a life to lead.
     Only God knows where my road is leading, yet, I am pulling back and saying "ahhhhhh....wait, wait, wait a minute" " I need a moment". Yes, I will need many moments to catch up with what my family and I have been hit with. Unfortunately, this planet of ours does not slow down when we want it to. I really want it to stop for a bit, I want the world to just stop so I can catch up, sit and catch my breath.
     I will have to find a pumonologist and set up pulmonary function tests, what in the world is that going to entail?!?
     I will have to have specialists involved in my life from now on. INTRUSIONS--that is what I don't like about this, now there will be Doctors and others intruding on my life.
Awwww well, time to try and get some sleep. Hopefully I can get some without dreaming. I have very vivid dreams, always have since I was very little. If I can't sleep, guess I will be on the internet, researching some more, hoping that I find something that will say........"Jules, you are going to be ok"......... but........... I don't think I will.
     Till next time my sweet journal, may God help me.

February 28, 2004

Well, I had my first pulmonary test on Tuesday, the 24th. I was soooo nervous and scared. But, thank God it really was not bad at all. The technician who did the testing was very nice and did his best to get the best results from my lungs. I have to admit though, I was very surprised how I did, it was harder on my lungs than I thought it would be. I go in on Monday, March 1st for my first appointment with a pulmonologist. I am trying to prepare myself that my lungs are not functioning properly. My parents were with me for the testing and will be with me on Monday. Thank God for support. I am NOT alone. I realize that now. It breaks my heart to see the pain in my parents eyes though. They feel so badly that this has been passed on to me.
I am really worried about my brother, Greg. He is married and has 2 teenage sons. I am praying that my nephews don't have this. One day at a time, even one hour at a time is all I can about handle right now. Amazingly, I have been able to work and help my clients with their problems and crisis. Somehow I am able to separate myself enough so that I can deal with myself when I get home after work. So far it seems to be working. But, I am tired, very tired. I am not sleeping very well at all. I am still crying a lot. I miss being happy.

March 3, 2004

MAJOR SHOCK !! Reality has really bitten me in the ass, my goodness, I sure didn't see that coming. Had my 1st appointment with my pulmonologist the other day......I can't write about it yet...

March 5, 2004

I have been in a state of shock since earlier this week. I found out how my lungs are functioning, or should I say how much they are not functioning...my FEV1 was at 41%; My God, I only have less than half of my lung function!!! What in God's name is going on??? I also found out that when I was diagnosed with asthma 4 years ago, my function was at 61%. That is how much I have lost in 4 years time. I was also told that I have emphysema not asthma. I am only 42 years old, how can I have emphysema !?!?!? I am slowly suffocating to death !! Oh my!! I will also have to start weekly infusions. I will be starting Prolastin as soon as it can be set up. How am I going to do that... I have had a phobia of needles since I was a little girl. I absolutely HATE those things. I am lucky that I only start to get whoozy when they take blood from me. A few times I have almost passed out. Now I have to have infusions every week... they have to be out of their freaking minds. I am not going to do it, how can I?? To me that is like telling me to jump off a bridge or go into a cave full of bats!! Oh Lord help me!!

March 15, 2004

People at work have been worried about me. They know something is wrong. I haven't told them yet. I am scared to, I wonder how are they going to react. We are a small company and close. We really care about each other and pray for each other as well. It is a christian company, so we are very open about our faith. I told my director about all that is going on. The look on his face told me volumes, he was very sad for me and felt bad about what my family and I have been going through. I have worked with him and this company for over 10 years. I think he knew that I was nervous and scared to tell him. I am afraid that people will think that I can't do my job and yet, I have to work. He treated me with the utmost respect and assured me that they will do whatever they can to help me and that my job is not in jeopardy. I was soooo relieved, I will tell the rest of them later this week at our bi-monthly staff meeting. There are some people that I want to tell individually first. My supervisor has been an absolute God send. Her name is Marlene. She has known about this from the start. She has been my main suport while I have been going through all the testing and feelings about this. I have to admit I don't know what I would have done without her. She has helped me to stay sane and has validated my feelings.
Ohhhhh...I am so very tired. I just want everything to just stop. I feel like I am running and can't catch up with anything. Bills are behind, my house is a mess and laundry is stacking up. I am very depressed, I am going to talk to the Dr. about anti-depressants. I know I need them. Well, time to try and get some sleep.

March 19, 2004

WEll, I told everyone at the office during staff meeting yesterday. I am sooo releived that is over. Their response was very overwhelming. Some of them cried too. They felt my pain and confusion. They prayed....

April 1, 2004

Today really sucks!!! It has been a very hard day for me. I couldn't work today. I went home after staff meeting to take care of myself. Tomorrow I start my infusions at Fairview Lakes in Wyoming, Mn. A while ago I realized why I have been so upset today. I feel like today is the last day of my NORMAL life....from here on things are going to be very different and more out of my control. Tomorrow starts a whole new journey, one that I don't want to go on. Deep down I know that God is with me, but He also knows that I am really angry at Him. I am trying to find strength to deal with all of this. Meanwhile, my father is also getting sicker and there is not a thing I can do to help him. I cannot be a donor for him. That is what is making me sooooooo mad and very, very disappointed.
I also realized that nothing is the same...everything is different, everything has changed. Things look, feel and smell different. And I don't like it one bit. I feel like I am on a perpetual temper tantrum. I am normally a very up and positive person. Feeling this way is very foreign to me. I have always looked for the positive and good in things. Right now I can't do that...maybe that is ok though. I guess this is what they call the grieving process. But it doesn't matter though, I still don't like it, not one bit!!!

APRIL FOOL'S DAY

Yeah, ain't that the truth.... had my first infusion. My parents were with me. I tried to be so strong and brave. But, it really hurt!!! They put the IV in my hand and that really, really hurt. I tried not to cry.. but big hot tears came anyway. I feel like I gave in, gave in to doing something I did not want to do. But, I do want to live, I want to live as long as I can, so if I have to do this to somehow accomplish that, then so be it. God help me to find a place for all this in my life.

April 4, 2004

Hey Journal !! I have to write about a wonderful chat room I found. It is called Alpha 1 Haven at www.spiderspun.net , I was in the room last night. They all seem like great people who are struggling with living with Alpha. Gosh, guess I really am not alone. There are quite a few of us out there. They are all in different stages. Some have had transplants, some are waiting on the transplant list, some are like me. They were a huge help to me last night. I didn't know I could ask for a different size needle. I also learned I am really going to have to learn to be my own advocate and learn as much as I can about Alpha 1. There are just too many Dr's and nurses that don't know about this.
I had somewhat of a reaction to the infusion, I got the major itchys. I was itching all over. Drove me absolutely batty. They suggested I take a antihistamine. It did help.
I guess I am a bit relieved, relieved that the first infusion is over. I was so nervous and apprehensive over it. Now I know what to expect next time. WEIRD.....there is going to be a next time again and again. Can't believe that I will have to have this every week for the rest of my life. This is so strange......how life can be going along and you believe everything is just fine....then WHAMMO....everything you knew just gets turned upside down and nothing looks the same. Is this called shock? Guess so, Oh Lordy, I need help. I am not going to be able to do this by myself.

April 9, 2004

It is Good Friday today. I can't help but think how trivial my problems are in light of what was sacrificed for me, a mere sinful human being. How awesome is that? I thank God for my faith, for His Son, for His gift. I don't know how anyone can live without this knowledge of Christ. I know I cannot do anything without God as my center, as my light to help me see the way I need to go. I may not always like it or understand it. But, guess I really don't need to, as long as I remember that God is with me all the time. I never was alone in any way, I know that, deep down I knew that. God has been carrying me and my family through all of this. It is my own humaneness that gets in the way, guess I can say I have a bit of a control problem. That is hard for anyone. This Alpha thing is really challenging me to hang on to my faith, hang on to God for dear life. That is fine with me, at least I have something to hang on to. The creator of this website, Spiderspun says it perfectly..........

" Be your own David, Be ready for Goliath "

Well, here I come.

*Note*
This is a "personal" journal of one specific patient, thus and therefore it is strongly advised that you check with your doctor, first, before following any of the medical routines as described by the authors here at Spiderspun