Don't know I why I don't call . . .

I am not sure what is wrong with me . . . but apparently there is something wrong. I thought I would use this blog to come clean and be very direct and honest about what I'm thinking and feeling as I go on this journey but that has not been the case. I find myself wanting to "tell it like it is" but at the same time avoiding posting because I don't want people to know that I am not handling this well or to know that I am sick. Maybe I don't want to know that I am sick and when it is in print, there is a permanance - you can't run from print, especially on the internet. So, my current reality is the good, the bad and the ugly. The LUPER is no joke. It is a daily struggle to get up in the morning, to functioning and to staying somehow in a good place. I am excited to wake every morning. I don't take that for granted because well, to be honest, I am never sure that is going to happen. Often when I go to bed I feel like this could be my last day. But I get up and I am grateful and excited. But then I try to move and the pain - the pain is ever present and causes me to cry. I begin almost every day of my life in tears. I get myself up and take a shower and get dressed and hobble down the stairs and greet my best friend with a smile and a "I'm o.k." Now my best friend is brilliant and she knows but she doesn't pry too much, she takes me to work and then makes sure that I eat throughout the day and she takes me home and encourages me to eat dinner. But she knows - one of the reasons she is my best friends is because she always has my best interest at heart and knows when to push and when to let me go but she is in no way afraid to push. I come home and I know I should eat - I need to eat, it's important to eat but I rarely eat. I often fix food but the amount that I eat is so small. Now this is of great concern to me because when I don't eat on a regular basis my body goes in to starvation mode so I don't burn calories, I keep weight and gain weight - and the last thing I need is more weight - I mean honestly. I try to eat, three times a day - now that it's cold, I can't get enough Oatmeal or Cream of Wheat . . . that is great, but then it all goes down hill. I will drink all day - fruit juice being my favorite thing - but I have no desire to put food in my system and no taste for anything. Not even my favorite things. Its crazy and its not good I realize that so I try . . . I really try. But yeah, food is not my thing. Not even sweets even though i find myself surrounded by food. I mean I understand that when you are sick and undergo extreme treatment like chemo things change dramatically. Now the interesting thing is that there is no nausea, no hair falling out, no weightloss . . .so I look like I'm fine and since that is my thing "I'm fine" so people tend to believe me . . . but in reality I don't remember the last time I was fine. I think the closest I've been in a long time was when I was in steriods in August and September. But right now I'm not fine. I am in pain, weak and worried. Don't get me wrong . . . my faith is strong and I truly believe this is my Season of Healing. I feel that I will come out of this experience, stronger, healthier and motivated. Going through it - its just not that easy. I feel like I may be truly coming to grips with all that the doctors have said to me . . . it is sinking in and it is scary. I don't want to die. I have too much to live for - but in reallity, I am dealing with life threatening illnesses. Diseases - dis - ease . . . yeah, that's about it - no ease - lack of ease - without ease - that is the life I am living . . . a life of Dis Ease . . . and waiting for the healing. The healing that I know will come because I am confident that it will come but on the journey - it is scary. All that being said - the spot on my kidney is gone. Yepper, gone - it just disappeared. Like it was never there. And my kidney function is great . . . but don't get too excited. I have 2 more weeks of treatment. Because it could still be there - post treatment if it is gone and the kidney function is still high then there will be excitement - until then, there is some relief, a lot of praising God for mercy and some vigilance. But then there is the Lupus - of the 2 diseases, it would seem lupus is the less devastating but no - it is the one that may take me out. Right now it is "aggressive." What does that mean, it means it is reaking havoc on my body. It is causing swollen joints which make it difficult to walk, move, or sleep. - it is causing pain - extreme pain. My actual skin hurts. And oh the strange discoloring on my skin - it is horrifying everytime I see another strange colored spot or discoloring. And I have a tooth-ache. I think I have a cavity. The problem is I am terrified of dentist. I would rather go to the gyn then go to the dentist. I do not go, do not want to go and can not see myself going to the dentist. But I may not have a choice in this one. The only place I trust is Miller Oral Surgery - they took out my wisdom teeth when I was 21 or 22. It was pleasant I wasn't in distress and not a lot of pain. So if I have to that is where I will go again, but I really don't want to go . . . but I'm not dealing with this pain well, so I may have to break down and go. I have a housemate. I see her almost every day and she knows none of this. I saw her this morning, she was on her way to church and she said "Good Morning" and I said "Good Morning" but she had no idea that I was frozen in place by pain. Why is it I can't be forthright and honest with the people closest to me - the people that care - the people that will help ?? It is starting to bother me - I have to stop putting on a brave face - I have to stop pretending that I'm o.k. - I have to admit that I need help and that I'm in pain. I have to wonder if I am adding stress to my body by holding these little facts in . . . How to let go and admit your honest state of existence - how do I do that ? Why can't I do that ? This is a good start - this is my first step . . . I know there are many people along the journey - many scarecrows, tin men/women and lions . . . I need to reach out and grab their outwardly stretched hands and let them help me down my fuschia bricked road. (You know pink is my signature color) : )

So NOT Happy . ..

So, it seems as if I am being made to face certain realities about LUPER . . . one, it is painful, two, it is painful, three, it is painful and four, the medicine that is healing me is also changing me. I now exist in a world of inflammation and pain. I have discovered that I can no longer say I'm tired because tired doesn't begin to describe it . . . I am exhausted. And I am weak. I have trouble walking, sitting up or even talking on the phone. I just want to sleep. The upsetting thing about that is the pain I feel when I lay on my side, or my stomach. I naturally sleep on my side, either side, but my hips hurt. Oh, this whole joint pain is just way too much. I think the inflammation is less but it feels horrible. Everyone that knows me knows that cereal is my favorite thing ever and I LOVE DAIRY. Not just like most people but I drink about 2 gallons of milk a week on top of cheese, ice cream and my cereal addition. When it gets cold, I make a 20-ounce cup of hot cocoa every morning. Dairy makes me happy . . . but no more. I don't want it and my body isn't tolerating it very well. Although I was able to eat mac and cheese last week. But it wasn't the most delicious cheesey goodness ever. And that is sad. Last year when I broke my knee and hip simultaneously the doctor remarked on the strength of my bones because the blow would have caused any other person to have at least 2 fractures or broken places. So, I look at it as investment but it also taste so yummy but no more. Dairy doesn't appeal to me and is no longer deliciousness. I guess its not the worse thing that could happen to me but it's upsetting. On the upside, I can't get enough of the yummy hot dog deliciousness. It's a strong strong desire - hot dogs, you know street vendor hot dogs, 7-11 hot dogs but I did have delicious hot dogs at the E this weekend at Oktoberfest. This weekend I went to the E for homecoming. The E was live and the people were amazing. I was treated so well and everyone cared - it made me feel special. And I was glad I went but I also realized that there won't be too many of those weekends for a while. My body definitely needs to be in a state of inaction. I plan on doing nothing this week in hopes of making it to my nephew's football game on Saturday. He is such an amazing young man. And I realize that I may not make it but I am definitely going to try it. And then at the end of the month I'm suppose to go to the circus with my 3 younger cousins . . . I pray I make that but I am not pushing myself. I will do nothing that will cause me additonal pain, discomfort or stress. I am so not happy right now . . . I'm constantly in pain, I have no enegry and I can't get warm. I am at a severe level of discomfort and I don't want to complain because no matter how bad this is I realize that I am beyond blessed.

A Season Of Healing

In some ways I feel that a lot has happened since my last post and in others I feel like nothing has really happened. I haven't blogged basically because I've found myself really tired. I've started using my phone to update my FB from bed. So it is rare that I sit down at a computer. I guess an update is definitely in order. I got a job ! Yepper, a job and it has health care benefits. So my whole life is changing for the better in many many ways. I am so grateful for a job. I love this job and it makes me happy to get up everyday and go to work. I'm getting used to the schedule and find myself taking a nap when I get home and still going to bed at 10:30 or 11:00 : ) But it is good. I am looking forward to being paid every 2 weeks and being able to splurge on things like medicine and fresh fruit. So, now I have to formulate a plan to repay the people who helped me in my deepest darkest time. I don't want to stress myself out about how I'm giong to do it or how quickly I'm going to be able to do it because I am suppose to elimnate stress from my life. I also feel like each person who reached out to save me is patient. I have found myself in a lot of pain and there is a lot of inflammation. I'm afraid my ankles will never come back and I'll never be able to rock a dress the way I used to . . . oh, the good ole days : ) My kidneys hurt so much now and days(or is it now in days?) but I know that the chemo will do its job and the pain is temporary. I daily find myself trying to decide if my pain is from the lupus or the other issue. I know the inflammation is all lupus and honestly it has never rocked me the way it is rocking me now. It is truly rocking me to my core. But this too shall pass. I've had so many feelings racing through me over the last month and a half. I have dealt with fear and pain, happiness and love - I've been depressed and down and then elated beyond words. It's a crazy rollercoaster. I am not fond of rollercoasters. I am trying to focus on the positive . . . I think it is the pain that drives the negative. At times it is indeed intense. As I sit here and type, my spine and kidneys are killing me but it feels better to sit up than to lay right now. Of course that could change any moment. My body is fickle right now. I am learning to ask for help and I am learning that there are a lot of people in my life who are willing to help me. It is beautiful. I am learning that it is o.k. to express pain. I am learning that everyone doesn't expect me to be strong and so maybe I shouldn't be disappointed in myself when I am all too human. I feel vulnerable and I think that fuels fear also. I don't like feeling helpless. I am the person that helps out and reaches out to make other people's lives better. But this is the time in which I have to figure out how to reach out to myself and make my own life better. I just don't want to be selfish. I feel like other people could be using my help and I'll be o.k. Further evidence that I'm a work in progress . . . and I'm still learning. I must say I'm overwhelmed by the support, care and love I've received over the last month or so. I'm not surprised because I try to ally myself with good people who have good morals, good ethics and good hearts but it is truly amazing to see that in action. I am tired now and feel weak. So I am going to go to bed. I will try to make the time between blogs shorter. Thanks for reading. I know that I am blessed in the midst of adversity and that this is truly my Season of Healing.