Tuesday, October 28, 2008

Busy, Busy, Busy....

I cannot believe it's been since June since I've posted. Time just whizzes by and before you know it, it's nearly winter (which I despise).

Health-wise, I'm doing much better. I will soon have an MRI appointment for my right arm and neck. I have had bursitis on my right shoulder for years. This year I've had a combined total of four cortisone shots. I was so beyond bummed that none of the shots worked and it usually works very well. Right now it's so bad that I cannot even lift my hand up to my ear without experiencing blinding, sharp, piercing pain. I baby my shoulder so as not to aggravate it further more. Hopefully my doctor will find with the MRI readings something and treat it. I'm absolutely terrified of having any surgeries done on the shoulder. My hands, my arms, shoulders are my life. The thought of not being able to use my hands, arms, shoulder does scare me. We'll see what happens when I know more. I will report it so you know.

I have decided it was high time I get a job! I'm working part time for the time being and absolutely love my job! I've been working since 28 of August. It is a challenging job to say the very least. However, with a very cool head, sharp & very alert eyes and especially being way ahead on wits, things are fine. I work in a 'host' home. A Host home is a residential home with 1 to 2 residents who cannot live independently. A Group home is 2 or more residents in a home. Currently at this time we have just one resident in the house. I thoroughly enjoy working with the resident and with the employees. It's a lot of fun. Then again, there are times when the resident's behavior changes that can be very challenging. However, all in all, it's a lot of fun for the most part!
The major drawback to working is that I want to work a lot more hours and right now I am not able to work more hours because I'm what they call a "PRN" It basically means if a full time staff isn't able to show up to work, they'll ask one of us "PRN's" to work. There is a drawback to this. You cannot work full time like the staff who are working full-time can. I am going to wait a while to see how long I'm going to remain a PRN before I make any decisions. It's very important that I work now that we have to take care of two homes.

My husband as most know was relocated to Atlanta, GA due to a job relocation back in 1996. The place my husband worked at has permanently shut its doors with the last day being 26 of September. To our unbelievable surprise, exactly 4 days after my husband & I made the final decision as to where the best decision to relocate, we received notification via Fed-Ex that my husband has been hired to work where it was our first choice! That is quite unusual! We at least had two-weeks at our house in Atlanta to get things done around the house and what not. My husband & I left Atlanta October 9 and spent the night at a hotel I think in Columbus, Ohio. We then left the following morning and drove up to the far Northeast of Ohio. We saw just one apartment that we liked and moved in Monday, October 13. It was quite instantaneous! Currently I'm still in Ohio. I've been out here 2 weeks now and should be flying back home sometime next week.
We really like the people we've met thus far. Even though it's an extremely small town, the people we've met couldn't be any nicer. The weather up here is absolutely bitter cold and that's something we are not at all used to. I do not own a single jacket and out here, a jacket is an absolute must. Because I won't be out here every day, I've decided that a jacket just isn't worth it. I miss the warm weather and look forward to returning to the warmer weather. We're supposed to get upwards of 3" of snow. I'll believe it when I see it. I remember when we lived in NY when the meteorologist said it would snow and it didn't! I rarely believe meteorologists. What I see on the news in terms of the weather, I pretty much come to my own conclusions and that's that. However, as far as snow goes, I will truly have to see it to believe it. I just don't like the cold one bit. I don't like how it gets right through you and it hurts everywhere. I really shouldn't complain! I'm so very grateful that my husband is working.
It does disturb me that so many people are out of a job. It really does disturb me. I can't even think about the fact many of our hard working Americans cannot even collect enough money to make ends meet. It's very difficult. My heart really does break for our Americans. I'm sure it's just not our Americans who are suffering the extreme downfall of economic times... Our allies, Australia, Europe, etc are suffering just as well. I'll tell ya, I truly cannot wait until election day arrives. I really can't! It's unthinkable that we even have to be in a state of a recession. The hardest part is a lot of children and even adolescents simply cannot grasp the enormity of what's going on and yet what they want, they want. I hope this is a time for when parents can really sit down with their child and say look.... things aren't looking good in America and elsewhere financially. There's a difference between Want and Need. I always used to ask our children when they came to us with something they asked us to buy for them. I used to ask them is the item a want item or is a need item? They would then have to explain why such and such item is a want (or) need item then my husband and I would think about it and either get the item or hold off for a while and get it at another time. It always worked with our children who are now young adults in their 20's.

As far as beading goes... boy I've been beading here and there and in between, if you know how that goes! However, since I've been in Ohio, I haven't beaded once. When I sit down to bead, something comes up that I have to do. It never fails. I guarantee you one of these days I am going to find myself a nice cabin out in the middle of nowhere or even right on the beach where I'm guaranteed no one can bother me, and just bead to my hearts' content. I would like to do this for two to three weeks and then go back to society! lol. I'm quite serious about this though. It's just next to impossible to sit down and bead. During the time when I am getting everything set up, no one bothers me at all.... however just when I'm sitting down, how is it that whoever comes to me knows I'm just about to bead? Does this happen to you? By the end of the day I see my work neatly spread out but am so discouraged that I have to clean things up and try again the next day or so. It's maddening sometimes. Seriously it is!

I've taken a couple of classes at a different place and really enjoy this place. I have had no trouble understanding instructions and the instructors themselves. It's been really nice! A very dear, close friend of mine has been giving me instructions over emails and that I have to admit has been my personal favourite of mine.

Currently I have several almost completed projects. A couple that will take me a while to complete. And one that I will complete whenever the mood strikes.

I just cannot believe how very busy the end of the summer up until now has been so very busy. Now that my husband is living in Ohio and I'm living in Atlanta, it's going to be extremely different for all of us. We'll have a lot more bills to pay, a lot of flying back and forth and sometimes I'll be driving out to Ohio so our labs can see 'daddy'! All of this will take getting used to for a while. I believe in a few months or so, it will be quite difficult for me to travel out because of the snow.... I've lived up north over 32+ years and used to ski all those years and lived for the snow... drove in snow, etc... However since my illness, the cold does hurt and really aggravates a lot of the symptoms that I have. We'll see whether or not it'll be a doable thing for me to drive out to the far north east of Ohio...

Well.... it's been a long time since I've been up this late... I'm a night owl but not the past few weeks or so... I'm normally out like a light anywhere from 9 to 10... The moment I learned we can 'move' the laptop to where I am right now has me quite happy! I'm still trying to learn how to use this computer since it's so new. It's nice though! Smile...

I'll try my very best to post more often and when I can, I will post pictures once I figure out how to do that. I cannot figure out how to create a layout that I want. I do not want to use the layout that I currently have. However, for the time being, I simply have no choice whatsoever. I'll take what I've got! No complaints!

Till then my friends.... Keep smiling.....

Wednesday, June 04, 2008

Long time, no speak...

Hello my friends... It's been a long time since I've added anything to the blog... things should soon start changing though. I haven't been beading for quite a long time. Whatever I do bead, it's for a very brief period of time. I am just so easily wiped out. My latest test results show that I'm in remission which is excellent news! I am finishing my last dosages of chemotherapy Thursday 5th of June! You can guarantee I'll be celebrating that! Walking down stairs and then walking back upstairs to me is like having been in a marathon. I'm told I should start feeling better once I'm finished with chemotherapy. Let's hope so! I am noticing my hair is growing back... I have no idea how long it'll take for me to have a head full of hair so that I will not have to wear my biker's cap.

I'm currently working on a project that is by Carol Dean Sharpe... she is an incredible bead artist. I have always admired her work and imagine my extreme delight as well as excitement when I found her in Step By Step Beads magazine... not just one issue, but in three issues thus far. I think she's going to have another project again for the July/August magazine. I absolutely detest Southwestern zigzag designs... I have never liked such designs. My husband loves that design as does our youngest daughter, Nicole who will be 21 on the 25th. Carol has a Southwestern zigzag or abstract peyote pattern in the March/April 2008 Vol. 6, NO 2 issue on page 39. I swore I would not make a bracelet like that. Well was I ever wrong! Nicole out of the blue decided to get her wrist, (yes the top of her left wrist) tattooed. Why on earth she decided to do that, I'll never know. She has to have it covered whenever she works. Her sister warned her not to get it on her wrist but what can you tell them at that age? They're gonna do what they're gonna do with or without our blessings. Well... the tattoo isn't small like she said it was going to be... it's a little over 2 inches in width... so I have to make her a bracelet so she won't have to wear her "Heads" sweats wrist band all the time.
I copied the pattern and put it behind a peyote graph but it ended up confusing me even more so... the cuffs that Carol makes is absolutely perfect in width for me, but for my daughter, I have to make the cuff wider so her tattoo cannot be seen on the job and when she's interpreting which is a major distraction. I have never used a graph before and am trying to figure out how to make the cuff wider and keep the design neat. I thought about doing a mirror image but it will look awful eventually. I haven't purchased the Bead Tool program. I know purchasing that program will be a huge help. I wouldn't even be able to use the pattern on the program without the designer's permission, in this case, Carol Dean Sharpe. I need to make it at least 47mm or maximum of 2 inches in width. The length is something anyone can do... What I think I'll do is email the designer of the pattern and ask her if she has a program to extend the design of the pattern to the width I need. Or I'll ask her if I could please have her permission to play with the same design after I purchase Bead Tool and go with the width I need. I just hope Bead Tool won't be all that difficult. I cannot believe how swiss-cheesed brain I am over this one little thing. I keep thinking if I make the 2" width with extended zigzags, it's going to look wicked, busy and just tacky... The whole design is just one I don't like at all. I'm very much into spirals, circles and anything with soft edges... nothing rough, cut, sharp, harsh lines, harsh edges... I'm going to be using different colours. After I make her this bracelet, I'll make different designs.
There is another pattern that I actually like that Carol designed... it's in Step By Step Beads Vol. 6, NO. 3 on pages 20 - 21. It's a nice, lovely design and much softer. I've never done a 3-drop peyote stitch before... so it'll be nice to do this after I complete the bracelet cuff for Nicole. The spirals, dots and whatnot is being saved for another time. I don't want to get ahead of myself too much and then end up having UFO's all over the place. I've got several UFO's around the house... I'm so desperate to complete just one thing but must pay an additional 'lovely' $45 to a teacher who taught the stitch... I cannot for the life of me figure out what I did wrong and I just cannot justify having to pay $45 just to ask her to look at it to tell me what I did wrong... There's a place further out north east that automatically help anyone for free so I'll bring it there when I'm feeling up to it and see if someone can figure what I did wrong and get me back to where I need to be so I can finish it. It's the one piece I'm so anxious to finish because of the colours. I absolutely the bracelet but not the way it is right now. It's in front of me and every single time I look at it, it frustrates me because I cannot figure it out. Soon I'll have it taken cared of and I'll be wearing it proudly!
For those of you who are not familiar with Carol Dean Sharpe's work, please do visit her at her blog and also at her Etsy site. You'll see right away why I like her work very much. I especially like her personality... always positive and happy.
If I have Carol's permission, I will share my photos of the work in progress using her design. The only change that will appear is that it will be much wider than the cuff shown in her pattern. I personally like her size as I'm not big on wide bracelets... (I may accept some depending what it is)... Now if I do not have Carol's permission to share my work in progress, I am not going to do that. I will only show the final-finished piece. First I've got to figure out how to enlargen the piece & still make it look nice.
I am sincerely looking so very much forward to coming back with photos and whatnot! I miss blogging.

Monday, March 17, 2008

It's been quite a while...

It's been quite some time since I've posted anything on the blog. I haven't been on the computer much at all. When I do log onto the computer, it's just to download email w/o reading it and go back to sleep. I'm still on chemotherapy (Cytoxan)... Now I'm on anywhere from 150 to 100mg. For a while my WBC count was out of control. In December it was I think 2.0, then it went to 2.6 but after that, things took a turn for the worse. I was not able to ward off such extreme fatigue and besides that I was constantly getting sick. The doctors thought I may have had another pancreatic attack... turns out it wasn't that! Thank Goddess for that. It turns out it was gastritis. My WBC even though it was dangerously low at 2.6 at the time I was admitted dropped much lower to 1.1. At least my stay in the hospital was only several days compared to a couple of weeks prior to this recent illness.
I do sleep an awful lot. I'm just constantly tired. There are times when I sleep a couple of days straight without getting up. I'm just constantly exhausted. Lately I have been doing everything in my power to literally force myself to pull myself together. I still have a lot of trouble doing much of anything. I will always have a lot of pain no matter what I do. But at this time, doing anything that requires energy on my part is all that it takes to wipe me out a lot longer than usual. I have to have a lot of blood work done. I cannot have blood work done via the port or PIC line anymore. I kept having infections. So it's right back to the constant prodding, poking, over and over until a successful vein cooperates and blood is finally drawn. Today is the first day since January that my lab results showed my WBC is at 2.2! It's about time! I am quite anxious to get my energy back. I have to work on several other things that are very low in count.
When I am alert I bead whatever project I'm in the mood to work on... I of course read everything there is to about bead techniques and whatnot... I'm constantly fascinated with everything there is in regards to the topic of beadweaving, loomweaving, embroidery beading... I've been reading a lot about R.A.W (Right Angle Weave) and like so many other techniques, want to give that a try. I have been doing a bit of beading using the Ndebele technique, Herringbone technique and in conjunction I use the ladder & brick stitch with that as well as the peyote stitch which I almost forgot to mention. I am interested in seeing what I can do that is typically not done by beaders. I'm just one of those who do not like repetitions. The more unique the better for me. I just like art you are familiar with but just using it quite differently. It's a lot like David Chatt, he stands apart from the rest of the bead artist due to his style and his sculptures... He's an awesome inspiration to me. If he doesn't inspire you then I don't know who does. He truly fascinates me. Not to get off tangent, it was quite interesting reading about his travels overseas. I would be unbelievably honored to learn from David Chatt one of these days! Another artist that intrigues me is Margie Deeb. Her knowledge when it comes to colours just blows me away. I personally don't bead or do pretty much anything else without reviewing her book text-decoration:underline; "The Beader's Guide to Color". I am looking forward to her new book that's coming out in June. I could always use help when it comes to colours as I'm colour-challenged if that makes any sense. I even bring a small colour wheel everywhere I go. Sometimes I'll see something that will become an instant inspiration for something I want to do in regards to beading or other form of art... the colour wheel comes in incredibly handy when I'm jotting everything down... I might see rocks & stones strewn about... I'll take pictures of it and if I really like it, I'll start playing around with the hundreds upon hundreds colours of seed beads I have and colour the rocks and stones, etc and just keep at it until I come up with what I like. I tend to put my work down for quite a while and go back to it. I don't like jumping into something at the drop of a hat. I want to make sure I'm satisfied with the colours & the layout of the way I want the art piece to come out. More often than not, the work ends up surprising me because it comes out differently than I had in mind. That to me makes art all the more fun and certainly interesting!
When I have some free time, I would like to figure out how to make this blog a bit more presentable and personal rather than having someone else's layouts and whatnot. I especially want to figure out how to post pictures at specific areas of the blog. I'm a bit slow when it comes to learning how to do websites and whatnot. Technology in this sense isn't my forte! Nonetheless, I enjoy learning new things every day!
I will do the best I can to post a little more often. I wish you continued good health & much happiness always.

Sunday, December 16, 2007

New lab results

I finally received my latest lab results on Thursday, December 13. My WBC count went up to 3.2 which of course is still low but excellent results! It still proves that I am not capable of fighting off infections. The best news is that Cytoxan has been working wonder for my lupus ANA count and the NEW count is believe it or not, down to 751! How good is that?!! From a count of mid 3000's, down to 2000's, to the thousands then the end of November it went from mid thousands to 937 to 751 in just TWO WEEKS! I can't ask for anything better than that! The doctor doesn't want to take me off of chemotherapy because things seem to be going in my favor. I do have to watch for my WBC, RDW, Neutrophils, lymphs, etc because the numbers have changed dramatically. So we'll see what the new results show in TWO WEEKS! I'm stoked I won't have to go through more needles just to find a vein for quite a while! It's a terrific two weeks I'm looking very much forward to!

I'll write in another post how all of this has affected me... especially at this time with feeling 'blah' .... or just ah... I'm trying to think of a proper word to use here... 'out there' or even better, out of sorts... if that makes any sense. Whether it makes sense or not is not important. It just makes sense to me!

Friday, December 07, 2007

Incorrect information...

Hello! It was my daughter, Kiersten's 22nd birthday yesterday, December 6th! My husband & I just cannot believe she's already 22! We can remember the number of times when they were little how we used to discuss the fact we cannot imagine them being teenagers, let alone adults! Time just flies.
In as much as we miss the innocent days when the girls were just wee ones to their teenage years.... I have to admit it's quite nice now that they are adults. They are living here at home with us and it has been just fabulous having them home with us. When they were on their own for the time they weren't here, it was really good for them to learn just how rough it can be to manage all sorts of bills, auto gas, entertainment and whatnot! Now that they are living at home, they don't pay rent or anything.... (that will soon change though!).... I do want to say that they do pay "their" bills that have nothing to do with the house and food. However we'll let them have their financial 'freedom' a while longer! (EG).... seriously, they need to start contributing because there are times we certainly feel they have too much fun with what they can readily have on hand that they wouldn't be able to have if they were still on their own. Doesn't that sound familiar?!!! We are just so grateful they are very good young ladies. Thank Goddess they aren't into drugs or any other "inappropriate" behaviors that could spell trouble for them. They are truly well mannered, polite young ladies. Our relationship is just beautiful! We are very fortunate. I will definitely say I am so GLAD their teenage years are behind us! Ugh! I think teenagers are worse than two-year olds! Oy! I do not miss their outbursts at all! I never will miss it! lol!
We thought having 4 adults in the house (3 women, 1 Gentleman) would be challenging to say the least. Boy were we wrong! It's been just fantastic! We are enjoying the girls as long as they are at home with us. We know we are going to experience empty nest syndrome soon. We are enjoying and certainly appreciating as well as respecting one another. In spite of mistakes which is all quite normal, it is truly special to watch our daughters become even finer young women. :-)

Yesterday I stopped at my doctors' office to pick up several things. One of them was my lab report. When my doctor called me a week ago, he told us that my WBC was too high at 13 thousand. We had no idea what the normal WBC ranges were. The doctor mentioned to me if my count goes to a level that doesn't improve, even by 5 counts, he's going to have no choice but to terminate my chemotherapy treatment. This terrifies me a great deal. For the very FIRST time in almost 3 years now, My ANA count is FINALLY under the 1000 mark! Believe me I know this is dangerously high of a count but when you deal with ANA constantly climbing AND climbing, all you can think of is how much longer do I have before I am no longer here. I am totally not ready to leave mother earth. I have far too much to live for! When you have a life altering illness, believe me, life flashes right before your eyes. Everything you knew, everything you once thought all become a memory. Everything you see, everything you hear, everything you consume is far more precious and truly appreciated.
Back to my lab work.... My WBC count is NOT 13,000! I think the interpreter who handled my VCO call might have misunderstood the doctor. My doctor can talk as if he has a mouthful of marbles sometimes. My WBC is too low. The lab work was done on the 28th of November. I received the doctors' call on the 29th. I was very surprised the lab work was done so quickly. I thought I would hear from the doctor sometime earlier this week. Anyhow, my WBC is 2.8. Reference Interval is between 4.0 ~ 10.5. I asked what is the difference between a low WBC (White Blood Cell) count and a high WBC... low WBC simply indicates that the body is unable to fight infections. High WBC indicates (if I remember correctly... please correct me if I'm wrong) that the body has an infection. The nurse did mention to me that chemotherapy can frequently lower one's WBC.
Under the test of CBC With Differential/Platelet, my WBC is low, RDW is high, Neutrophils is high and Lymphs (Absolute) is low. The nurses were trying to find out what RDW is but nothing showed up in the reference books. I also have no clue what the others mean. I'll have to research it later on.
My Comp. Metabolic Panel (14) shows that my Alkaline Phosphatase is very high, AST (SGOT) is high, and ALT (SGPT) is also high.
My protein is positive whatever that means.
My ANA (Antinuclear Antibodies Direct) count of course is high. (Normal count is 100 to 120).... BUT, BUT and a big BUT.... this is EXCELLENT news for all of us... It's at 937!!!!! Believe me, I've been doing the happy dance the entire week!
I really started to worry a great deal last year in the spring of 2006 when nothing was working. How much chemotherapy can the body take after so long?! My ANA count just kept climbing higher and higher and finally I had a break from chemo the end of September & October of 2006 which is when I was hit with pancreatitis and hospitalized several weeks. Believe me, pancreatitis is no fun. The doctors didn't want me to start chemotherapy for a while for fear I might have another flareup of pancreatitis... during the time I was free of treatments for lupus, my ANA count was spiraling totally out of control.
My doctor said he wanted for me to have my blood work done which I had done yesterday... I am quite honestly very nervous about the results. I am very nervous if my WBC dropped any lower, then I'm truly done for in terms of chemotherapy. I have no clue what else will help control my ANA count. I have been trying to put a very positive front on this with my husband who is an absolute saint (I'm dead serious, he's an absolute saint!) and my daughters because I really don't think they need to know just how unbelievably nervous I am of the results. I've been thinking (which can be a dangerous thing with me sometimes!!!!) if cytoxan ends up being ceased, could I go back to methoextratate and just deal with the side effects? I had enormous pain from methoextratate....
Even though I lost all of my hair with Cytoxan, I did well most of the time... but became quite ill the past weekend and still feel quite ill... I am constantly nauseous and back to 'living' in the bathroom. I went to the doctor's yesterday to pick up some stuff... the ride there was torture... I just wanted a bathroom very close by... yesterday certainly was a rough day... I am currently feeling very nauseous and have taken Zofran which to my absolute, complete surprise is not even helping. Zofran normally helps me instantly. I don't know why it isn't helping me now. The nurse did mention that it is normal after being on Cytoxan over a period of time to start feeling this way. She said not to be surprised if it gets worse. Just what I need to hear. I don't want another sick Christmas. I'll never forget how sick I was from chemotherapy in 2002. Never again. Or at least I thought. We'll see how things go. I will post an update when I find out the newest lab results. I am hoping my WBC has at least improved. BTW, when I was out yesterday, I wore my surgical mask without taking it off. In as uncomfortable as it is, I wouldn't risk removing it at all. I am a little paranoid with viral germs right now simply for the fear if I do get whatever viral germ it is, I may not be strong enough to fight it off. So... the surgical mask has to be worn to avoid any illnesses. I really can't afford that at all.
Will keep you posted when I find out what the new lab results are.... two things... hope for improvement in WBC count and more of a drop in my ANA count!