Looking B@ck

I just took a look back at the blog that I wrote last October on my Lupus...WOW. I almost forgot how sick I was. Lupus is a tricky disease, and things got much worse for me not long after writing that blog. I truly believe I never fully went into "remission" from my Lupus flare in February of 2007. I started feeling better, and then it went from bad to worse. Was it because I was working a full time difficult job, both physically and emotionally? Was it because I wasn't receiving appropriate helathcare? There is no telling. John told me just last night, "Baby, we never know when your Lupus is going to flare". That is the thing with Lupus, there is truly never any telling. Somewhere around January of 2008 I started feeling pretty sick and tired. I remember Sofia's 3rd birthday party. I just kept telling myself, "I have to get thru this party, it is her birthday, after all". Simple life was so very hard. I fell into a deep depression, were I wanted nothing to do with anyone. Opening heavy doors, even talking at times was too much to bare. I remember in February we went to Sofia's friend, Abigail's birthday party. My legs hurt really bad and I could not stand up for any length of time. It was like it came on sudddenly that morning when I woke up. I knew I was in trouble. I felt miserable until I finally dragged myself into the doctors office in March. It was there I was told I needed a blood transfusion. I spent a Saturday in the hospital getting that done. My Loving and Supportive husband was right by my side. I just laid there on my side, back to him, tears streaming down my face. I did not want him to see me cry. I wanted to be "strong". Shortly after, I started vomiting all day every day. I got down to 96 pounds. I quit my job. I went down to Houston to see my Dad and when he looked at me, I truly knew I was sick. I got thru the weekend somehow, including going to a family reunion, and on the way back from Houston, I told John to drop me off at the emergency room. I didn't want to talk about...why. He knew. I just wanted to get better. So he and Sofia dropped me off. I literally had them drop me off around the circle drive. I took my pillow and sweater and told him I would call him later. I KNEW I was getting checked in. I was hell bent and determined. (Side note, this was my 2nd time in two weeks to go to the ER. The first time I was sent home) I needed help. I Begged the doctor to check me in and he did without a problem. I spent a week in the hospital. I didn't even want any visitors, and I didn't want anyone to know I was there. I was not wanting the charity and the poor me's, I just wanted to be healthy. I got a great doctor, which I still have, and good meds. I can't even begin to tell you how much better I am feeling now. I finally feel like that "wife"and "mother" and lets not forget "friend" that my loved ones deserve. I can do that now. I feel almost normal. Whatever that means for me..lol. I think as people we block out things that hurt so bad, and until I read this last blog I had blocked out how sick I got. On my most recent doctors visit he went on and on about how good I am doing. I said thank you, and he stressed it again...So I said, "yeah, I felt like I was dying". When he said "you were" it hit like a ton of bricks. That sounds awfully melodramatic and not something I want to hear to say the least. But it was true. Luckily, I pulled thru it, atleast this time. There are people who are not fortunate enough to pull thru it, and for them I continue to fight every day. Lupus fighters and survivors...This one's for you!!!! God Bless You ALL!

October Blog Below...
Not Gonna Cry About It Anymore!
Lupus is as much a part of my life as my Family. We are together everyday, we laugh and cry together we will be together the rest of our lives and our relationship is unconditional. I used to wonder...why me? I used to think I must have done something very wrong to have karma throw me such a curve ball, and to be honest I still sometimes think that is the case. I just feel like there has to be some sort of explanation why someone could have something of this magnitude happen to them. I go thru so many emotions with Lupus sometimes on a daily basis. I am sad that I have it, I am mad that I have it, I deny that I have it, and sometimes I think it was given to me to slow me down from living life in the fast lane. I used to try to ignore my Lupus because I thought if I did it couldn't breathe, and if it can't breathe it isn't real. I had signs of having Lupus my whole life, but it was so rarely diagnosed back then that no one even knew what to look for. I had joint pain as a child, I had chronic tonselitis, I was lathargic and slept way too much. I was diagnosed in 1999 right before my 23rd birthday. I was really sick when I was diagnosed but it just kinda went away. So I thought. I quit taking medicines except for when I would pop 4 ibuprofen at a time which was my own little magical cure. When I was tired, I would sleep...I had a succesful pregnancy....life was good again. I even thought there was a chance maybe I didn't even have Lupus at all. Until February of this year when Lupus hit me with a vengeance. My whole body went bizerke. My Blood Pressure sky rocketed, my eyes got so unbelievable dry and started doing about 100 other tricks, the depression kicked in high gear as a result of my body flipping out, my joints hurt, my kidneys became involved, I lost atleast half my head of hair and I couldn't get out of bed. I was scared that I may die and honestly thought it was a decent alternative to living in so much pain. I know that sounds awful dramatic and poor me, but don't judge me until you too have walked in my big ugly purple lupus shoes. I am feeling better now for the most part but I don't think I will ever be back to the level I was before this most recent and only real flare up. The ironic thing is that I only have a mild case, and I believe that to be true when I listen to some of my fellow lupies stories. I just hope my Lupus doesn't progress because the mild case is hard enough to take. I can't imagine what others go thru. Sometimes I feel guilty even complaining about my aches and pains when I know there are so many others worse off than me. But my pain is still real, and it is still me, and it is hard for me to live with. There are days that I am so tired all I want to do is sleep, and there are days that I could clean the whole house including scrubbing the walls. I never know what kind of day it will be until I wake up in the morning. Even that can be deceiving because sometimes I wake up fine and am entirely drained by 5:00 pm. I feel so guilty that my husband and my daughter don't have a "normal" Mom/Wife. I feel like this Lupus makes me about 50% of who I want to be. I try to stay strong because I do feel that Lupus and I are constantly fighting for the power/control and as long as I am fighting Lupus I am fighting off being sick. It doesn't always work but it is how I get thru my world. Often I hear stories of people who have died from Lupus or are really sick and I just pray that isn't my ultimate demise, but I do understand that it could be. Life is not promised to anyone, neither is marriage, kids, parents, college degrees, health, friends, or grandparents and I am lucky to have had all of these things in my life. The fact that I may ultimately lose the battle to Lupus has made me quite the hypochondriac because my Daughter deserves a Mother...she is what gives me the will to fight another day. I don't want you to feel sorry for me, I just want you to hear my story. When I want to talk about my Lupus, I do, but most of the time I would prefer to not even bring it up. I want to feel as normal and healthy as possible, even on the bad days. Please take the time to think about Suzanne. A fellow Lupie that lost the battle with Lupus 9/24/07. www.myspace.com/suzanne36