Time flies....

It's been more than a couple of months since I've posted. I wanted to keep things very quiet until we had more information, options and whatnot. It's been a while things have changed and it's now time I'm ready to let the cat out of the bag if you will.
As many of you know, I have Lupus that pretty much affect every organ and especially my joints. I often wonder if I have early stages of Alzheimer's because my memory (short term) toys with me every now and then. However, it's not Alzheimer's. Thank Goddess for that! That's been officially ruled out. Although lupus is NOT known to affect the pancreas, it affects my pancreas which is indeed quite rare. I must watch what I eat. I don't ever wish pancreatitis on anyone. It's the most painful feeling to go through. You know if you have this, you are living in the hospital for quite some time.
My lupus flare-up started of course when I had pancreatitis last year in September through October. My ANA (Anti Nuclear Antibody) count just kept creeping up month after month to the point I was close to the 3000 range. I was very apprehensive about starting chemotherapy all over again. I mentally knew that I was just not physically strong enough to go through what I went through a few years ago with chemo. It was as bad as it can get as those of you who go through or went through chemo know. The doctors mentioned to me in August if I do not cooperate and start a 'different' chemotherapy treatment, they can take me to court. I wanted no part of that. I started methoextratate September 5th with absolutely no ill side effects of any kind. I didn't even lose my hair! Unfortunately blood tests constantly showed my ANA count kept creeping up and now to the mid 3000 count. For those of you wondering what the normal ANA count should be, it's 100 to 120. It is common for those afflicted with Lupus to have a much higher ANA count. However having a count even in the thousands is quite dangerous and can be fatal. The doctors terminated treatment of methoextratate on October 29th. On October 30th, they started me on Cytoxan. Cytoxan is another chemotherapy drug. I do have side effects from this chemotherapy which I'm still on.... complete loss of hair, extreme and I mean extreme exhaustion, always tired. I sleep all day long, sometimes two to three days in a row. In as much as I want to get myself out of bed, I'm knocked out again. I just don't fight it anymore. I just go with the flow.
I had my first 'late' blood test November 28 and received a call from my doctor November 29th.... I was very disappointed to learn my WBC (White Blood Cell) count is over 13,000 which is way too high. What this means is I basically have no ability to fight off infections. On the plus side, my ANA count for the first time in months and months is 996! It's about time it went below the 1000 mark! The doctor said he's no longer concerned about my ANA count but far more concerned with my WBC count. He wants me to continue with Cytoxan for the rest of the week and have a blood test next week. We'll see if my WBC count went down or went up. I'll be so disappointed if my WBC goes any higher. It's the first time the doctors finally found 'the' medication that actually lowered my ANA count. I have been wearing my surgical mask everywhere I go. I'm not at all sure why it even went up. I do not wear my surgical mask at home, when I go to the mailbox and when I need to bring my daughter to/from work or wherever. I stay in my vehicle and just come straight home. Maybe it's because of that... I have no idea. I have always known I've never been very good at fighting off infections but this count is just too high and too dangerous. I'm thinking positive though. That's all that I can do!

My 20 year old daughter had a very bad fall at a food store which caused her to have herniated disks in L4, L5, 5,1 (whatever that means).... She had two treatments directly in the disks and after that she had 2 months of 3 to 4 times a week intensive physical therapy. Towards the last few weeks of PT, things started to take a turn for the worse. She was experiencing electrical jolts, unexpected violent left hip to toe spasms... we went back to the specialist and he said he's not going to give her anymore injections because she's just going to have the same problem once the medication wears off. We went to the Neurological Surgeon with all medical records in hand as well as her MRI films.... it was quite apparent the damage from the fall was quite astronomical. She had her surgery November 27th (Tuesday)... I spent the night with her at the hospital.... it was just incredibly difficult to see your child (she's an adult but to me, she's my baby) in pain that's indescribable. It's officially Sunday at this time... yesterday I removed the gauze, etc... the cut is certainly not a simple 2 inches like the doctor stated. Oh no! I was incredibly surprised to see how invasive the cut was. I used to have the stomach to watch surgeries on television so as long as it never involved plastic surgery and liposuction... ugh! ... anyhow... I just no longer have the stomach for any of that stuff. It's especially different when it's your child. She'll have the stitches in for 2 weeks.... she's walking a little better each day... she walks downstairs (13 steps) so she can go outside for fresh air and then come back in and back to bed to lie down and watch television. She's very bored. They are very young and want to be anywhere but home! Believe me I know how she feels. The plus side to all of this is that several friends come to the house and spend several hours with her so that's always nice.

It was my birthday yesterday (well.... Friday).... I'm still thinking it's Saturday, when it's really Sunday right now... It was a terrific day for me! My oldest daughter (she'll be 22 on the 6th of December!).... however, she made me breakfast which was just so sweet of her to do! She made dinner... originally she was going to do a rump roast but it was taken out of the garage freezer a bit too late in the day... so we'll have that for dinner tonight. Instead we just had taco's which was just delicious! She made the most unusual and gorgeous card for me... she made oh goodness I can't quite tell... but numerous pieces of origami which she absolutely loves... she made many of them and glued them onto the front of the card and wrote inside of the card. I love the card so much! She also knows how much I love listening to Seal's music and Fergie's music and got me those CD's. That's what I listened to most of the day! Did you know Seal also has Lupus? He's had lupus since he was a child. He's such a kind hearted gentleman. He's married to Heidi Klum who is on Project Runaway.
Nicole & her boyfriend got me a poinsetta plant and a card which was so sweet and so thoughtful! My husband is letting me get a limited edition bracelet kit which I'm not going to announce until I make sure I purchase it first before it's gone! (smile!).... He also is letting me purchase a software program that will allow me to create my own designs for loomwork or any other beading techniques. I don't like the idea of using someone else's pattern when I can very easily create something myself. I can't wait till I order the two things! I think maybe I'll order it early this week... I'm never in a rush... I'll take my time!

As far as beading goes.... I have not done any beading at all. (hardly at all).... I have just been far too exhausted. When I do log on, I just want to get off just as quickly because I'm so exhausted and want to just crawl into bed and sleep. Thank Goddess for my husband. He has been such a saint throughout the years I've had health problems. When my health problems ended in 1992, I thought I was on top of the world and could do everything and anything.... but boy did a building fall on top of me and change my world upside down overnight in September of 2000. The most important thing is that I have my family. We have each other.

We really don't hear much from my husbands' family. They don't call much. When we email them, they are busy and don't have much to say. We didn't even know about dad's health until several days later.... My husbands' two sisters live very close together with mom and dad. Mom & dad can see them as well as our neice's and nephew as often as they want... they do go on cruises, or non-cruise vacations every now and then... We live over a thousand miles away and haven't seen mom, dad, and the rest of the gang in several years. They know our house is always available to them. We were flying up north or at times driving up north and my husband said enough is enough... family can visit us... so... it's been hard for my husband. So as long as he has his cigars, his golf buddies, and time to go golfing that's all that'll make him happy! I am going to surprise him with a flight ticket to see friends of ours (his) he's not seen in person for quite a long time. It's time he go on vacation and enjoy the men!

I am so looking forward to 2008 coming along. 2007 was quite a year for a lot of things. Our daughters are both living at home now and it has been just so beautiful having them home! Be very thankful for your family. I lost my *entire* family December of 1989. Be thankful for your family. Listen to your children, tell them how much you love them regardless of their mistakes. They have to learn on their own! Make sure you hug your children every single day and tell them you love them and how appreciative you are of them. Not a single day goes by we go without hugging one another and telling one another how much we love & appreciate them. To this day and age, the word 'bye' is FORBIDDEN in our house. When the girls call or email or IM one of us, they never, ever say bye. Bye is too permanent of a word. I always end a conversation with 'Okey Doke, TTYL!" the girls constantly tell me.... Mom you just don't say that! lol! Your children will be home for the holidays from college real soon... enjoy them while they are home! Enjoy all the noises!

I will do the best I can to write more often. I hope each and every one of you are all doing well and in excellent spirits!