I'm just hangin' while I wait to leave for the Whitaker Center. My pastor, his wife, and some of his closest friends are going out today and I'm going along. It will be nice to get out after this tough week and get my mind on some other things!
I have been pulling my hair out all week with G-PACT web problems and finally my BIL helped me figure out the problem. Now I think I can move on with it, although I have to rebuild a few things I lost in the process. Oh, the frustrations of technology, web programming, and learning new design programs!! It's looking pretty good though I think. I am determined to get it up soon...especially with Julie's death. Tough as it is, people have really rallied and I have had probably 6-8 people ask if they can volunteer or what else they can do. People have become passionate about G-PACT and passing our link and causes around to all friends and family. So, it's crucial that I get CIP info up soon and update the information.
Julies memorial will be on Monday morning. Please keep the family in your prayers.
On Thursday, my doc finally found out that I have a rare infection causing my pain problems for the past 12 weeks or so! He gave me meds and said it SHOULD clear up in a week or two. I'm going to take them for two weeks to make sure since I am immuno-suppressed. I called my transplant doc who added another medication just to make sure we really hit it this time.
It seems like the long acting sandostatin may be kicking in! I only took two doses of the short acting yesterday and am not having any problems. I took some this morning, but will try once a day soon and see if I can get off it completely. If so, I'll plan to try the long acting again because now it's in my system and I shouldn't have to go through a few weeks of problems waiting for it to kick in. Please please pray this is the case! It would be so great to not have to manage my symptoms with the short acting! It still limits my ability to eat because it wears off after a few hours. This wouldn't be the case with the long acting. :)
I have to give Spunky fresh water and a treat before I leave and inevitably when I am ready to walk out the door, it takes me at least another 15 minutes to actually get out the door. Not sure what happens between being completely ready to go and getting to the door...but there is some force that always pulls me back for some reason...
Saturday, January 31, 2009
Wednesday, January 28, 2009
Channeling Anger and Paying Tribute
Yesterday was a challenging day for the gastroparesis community as we said goodbye to one of our own.
G-PACT's tribute:
Julie Werner was born on March 22, 1982. During a trip to Australia in 1994, she developed symptoms she thought were related to a flu-like illness she obtained there. However, after she did not get better she was eventually diagnosed with gastroparesis and chronic intestinal pseudo-obstruction.
On Oct. 25, 2008 Julie received four organs (small bowel, stomach, pancreas, duodenum) at the University of Miami. Although she did well the first few days after the transplant, her condition deteriorated rapidly and continued to do so. After a tough battle with respiratory problems, unexplained fevers, possible rejection, kidney problems, ongoing infections, and eventually septic shock, Julie passed away this morning, Jan. 27, 2009 at around 10:30 AM.
Julie became part of G-PACT in September of 2006. With a degree in communications and public relations from Michigan State, she was an incredible asset to our PR department. She always had a lot of ideas and shared them openly with me and the G-PACT board. She was in the process of creating an awareness kit for our organization, and put together a lot of information and ideas to help us reach out to media outlets. Not long before she left for Miami, she sent me all the information she had worked on so that we could continue in her absence. Because of her, we have an excellent resource of information that we are already using as we prepare for the DDNC in March.
Julie was passionate about G-PACT with a huge desire to return in full capacity upon recovery. She was a top fan of the Detroit Red Wings and loved Harry Potter! She sacrificially gave her time to G-PACT and faithfully attended scheduled board meetings, even when she was not feeling well.
Julie has had an impact on the lives of so many of you with GP and will be sorely missed. I personally am in a state of shock and completely devastated. Although I knew she was not doing well, I really felt like she would be able to pull through. Many of you have been following her progress for a long time. She was loved by many.
If you would like to send a card, flowers, or gift to the family, please contact me privately through FB or e-mail me at hastonc@g-pact.org and I will send you the information you need. I will also post more information over the next few days as it becomes available. A website is available for updates from her family as well at http://www.caringbridge.or
*************************************************************************************
Julie's death was a blow to me. Although I have lost even closer friends before, there is something about this one that just isn't right...not that any are right, but for some reason this one is really getting to me. I feel such a sense of loss. It has been a really tough year, but particularly a rough couple of months. I am inspired though...so many people have responded with comments on how Julie impacted their lives and a surge has erupted in the GP world to fight even harder now. G-PACT has gone into overdrive in trying to push our initiatives even more. We've added some new goals and pushed harder on the ones we already had started. We are determined to speak out at the DDNC very loudly. We will no longer be ignored or blown off! This just can't keep happening simply because the FDA won't approve medications and the government won't take these seriously!
I'm mad. I don't understand. I'm not mad at God...I'm just mad. Maybe at life in general...maybe at those who won't listen...maybe at myself for some reason...I don't know. It's just not right! The good thing about my anger is that I am channeling it into good things. I have accomplished so much in the past 24 hours because I am so bound and determined to get things moving much faster before this happens again. We WILL fight this. And we WILL win.
Sunday, January 25, 2009
Just another day...another crazy day...
So...I have a question...why is it that when one kid has to go to the bathroom, all of a sudden they all do???
So, we're short handed in the tiger room today at church and in my small group of girls, one said she needed to go to the bathroom. She looked like it was pretty urgent and we were not in a convenient spot in the class for me to take her!! I asked the leader of the other group if she'd keep an eye on my kids for a few, and then they ALL decided they needed to go...so we stopped the class and walked down the hall to the bathroom (which has water that smells like eggs and they of course pointed that out...)...maybe it's in theory with the whole yawning thing...and now writing about this, actually, I think I need to pee too...but I just barely did...
Spunky has been cracking me up lately...he is so funny. You'd think at some point I wouldn't laugh at the things he does over and over and over, but I always do...every little thing just makes me laugh so hard even if I've seen him do it 1,000 times. Yesterday, he discovered himself on my webcam. I was holding him in my lap with my webcam on to record it and he was playing on me and then all of a sudden just stopped...looked at the screen for a few seconds, then ran off of me as fast as he could...lol. Totally freaked him out. I put him back in my lap, and he would just not sit still...he was so freaked by that moving creature in the screen. He's reacted in a similar way to mirrors before, but not quite this dramatically. It was so funny.
So anyway, I never found my last dose of sandostatin...even though I know where I put it. I called on Friday to find out my insurance had rejected for my regular mail-in pharmacy to send it out to me again, but they would allow one of two others to send it to me. So.....being quite irritated they hadn't told me this without me initiating the call AND that it was the last day before the weekend...I had to call a new pharmacy, spend a good 15-20 minutes on the phone with them to give them insurance info...but mostly just listing about 30 meds!!! So, my coordinator jumped right on it and called to have them ship it to me by Saturday so I wouldn't be sick all weekend. Well, Saturday morning I get a call that the lady had authorized for it to be shipped for Saturday, but apparently it got messed up and didn't make it out!!! She asked if it would be ok for Monday...I'm thinking, well, no...but what choice do I have??? It was nice that she at least called to let me know though!! Otherwise I would have waited on Saturday expecting it to come and not know that it would be arriving on Monday. Hopefully she sent it out for an AM delivery. I told her I had been really sick!!
On an encouraging note, I did meet a few people with dumping this weekend. One told me that she too had a very severe case of it. She took her first dose of long acting sando three weeks ago, and it's just now kicking in. She told me that she can eat almost anything now with NO symptoms! So, maybe it will kick in in a couple of weeks and I can go off the short acting for good...but in the meantime I will take the short acting. If I find I am starting to have opposite issues, I will stop taking the short term to see if perhaps the long term has kicked in.
Still having pain with bowel movements. I have another appointment with the derm this week, but am still really wondering if I don't have a rectal fissure because it's just not healing on this really strong med for eczema. They didn't see it in my biopsy in December, but even though I had TOLD them what to look for, they also didn't see the ulcers or eczema which were very obvious to Kareem two weeks later when HE looked. We don't like the GI docs...they never do it right. I'll try to deal with it for three more weeks until I go back to Pittsburgh...what's another three weeks when it's been going on for at least 8-10 now??? The next visit will be a LONG day or two. I will have biopsy at 6:30 AM that day, go to clinic for pre-eval with my coordinator, then go for my DEXA (bone density) scan, go back to clinic to see Kareem, then go back to see the bone doctor about the results and to start my yearly IV infusion of Fosamax. I'm tired thinking about it!
So, the G-PACT stuff is going...well...going sort of...I'm still stuck on publishing my images and it's keeping me from making much progress on the design because I want to make sure my images will publish correctly before I spend more time on design. It's a little frustrating, but I'll figure it out. I'm right on the verge of it...I know what to do, it's just not quite working yet!!
Tomorrow I have to get up in the morning for labs by 9 AM...ugh...then go to HMC at 1 for my Aranesp injection. Then in the evening, I am taking my last newcomers class for LCBC Harrisburg. This will be my fourth attempt!! Something always comes up...I think twice I've ended up in the hospital and once I was just going insane with work (had a G-PACT board meeting overlapping!) and cancelled. Looks like I'll make it this time...even though I am still going insane from work...this time it's work that I can put aside for one evening!
Well, the Spunk just came out of his igloo desperately seeking my attention...I must go...I swear...he is so spoiled. He KNOWS it too!!!
So, we're short handed in the tiger room today at church and in my small group of girls, one said she needed to go to the bathroom. She looked like it was pretty urgent and we were not in a convenient spot in the class for me to take her!! I asked the leader of the other group if she'd keep an eye on my kids for a few, and then they ALL decided they needed to go...so we stopped the class and walked down the hall to the bathroom (which has water that smells like eggs and they of course pointed that out...)...maybe it's in theory with the whole yawning thing...and now writing about this, actually, I think I need to pee too...but I just barely did...
Spunky has been cracking me up lately...he is so funny. You'd think at some point I wouldn't laugh at the things he does over and over and over, but I always do...every little thing just makes me laugh so hard even if I've seen him do it 1,000 times. Yesterday, he discovered himself on my webcam. I was holding him in my lap with my webcam on to record it and he was playing on me and then all of a sudden just stopped...looked at the screen for a few seconds, then ran off of me as fast as he could...lol. Totally freaked him out. I put him back in my lap, and he would just not sit still...he was so freaked by that moving creature in the screen. He's reacted in a similar way to mirrors before, but not quite this dramatically. It was so funny.
So anyway, I never found my last dose of sandostatin...even though I know where I put it. I called on Friday to find out my insurance had rejected for my regular mail-in pharmacy to send it out to me again, but they would allow one of two others to send it to me. So.....being quite irritated they hadn't told me this without me initiating the call AND that it was the last day before the weekend...I had to call a new pharmacy, spend a good 15-20 minutes on the phone with them to give them insurance info...but mostly just listing about 30 meds!!! So, my coordinator jumped right on it and called to have them ship it to me by Saturday so I wouldn't be sick all weekend. Well, Saturday morning I get a call that the lady had authorized for it to be shipped for Saturday, but apparently it got messed up and didn't make it out!!! She asked if it would be ok for Monday...I'm thinking, well, no...but what choice do I have??? It was nice that she at least called to let me know though!! Otherwise I would have waited on Saturday expecting it to come and not know that it would be arriving on Monday. Hopefully she sent it out for an AM delivery. I told her I had been really sick!!
On an encouraging note, I did meet a few people with dumping this weekend. One told me that she too had a very severe case of it. She took her first dose of long acting sando three weeks ago, and it's just now kicking in. She told me that she can eat almost anything now with NO symptoms! So, maybe it will kick in in a couple of weeks and I can go off the short acting for good...but in the meantime I will take the short acting. If I find I am starting to have opposite issues, I will stop taking the short term to see if perhaps the long term has kicked in.
Still having pain with bowel movements. I have another appointment with the derm this week, but am still really wondering if I don't have a rectal fissure because it's just not healing on this really strong med for eczema. They didn't see it in my biopsy in December, but even though I had TOLD them what to look for, they also didn't see the ulcers or eczema which were very obvious to Kareem two weeks later when HE looked. We don't like the GI docs...they never do it right. I'll try to deal with it for three more weeks until I go back to Pittsburgh...what's another three weeks when it's been going on for at least 8-10 now??? The next visit will be a LONG day or two. I will have biopsy at 6:30 AM that day, go to clinic for pre-eval with my coordinator, then go for my DEXA (bone density) scan, go back to clinic to see Kareem, then go back to see the bone doctor about the results and to start my yearly IV infusion of Fosamax. I'm tired thinking about it!
So, the G-PACT stuff is going...well...going sort of...I'm still stuck on publishing my images and it's keeping me from making much progress on the design because I want to make sure my images will publish correctly before I spend more time on design. It's a little frustrating, but I'll figure it out. I'm right on the verge of it...I know what to do, it's just not quite working yet!!
Tomorrow I have to get up in the morning for labs by 9 AM...ugh...then go to HMC at 1 for my Aranesp injection. Then in the evening, I am taking my last newcomers class for LCBC Harrisburg. This will be my fourth attempt!! Something always comes up...I think twice I've ended up in the hospital and once I was just going insane with work (had a G-PACT board meeting overlapping!) and cancelled. Looks like I'll make it this time...even though I am still going insane from work...this time it's work that I can put aside for one evening!
Well, the Spunk just came out of his igloo desperately seeking my attention...I must go...I swear...he is so spoiled. He KNOWS it too!!!
Friday, January 23, 2009
5 AM Facebook Post...
It's 5 am...why am I still up?
You got me...
I don't know...
I have a migraine...
Why do I have a migraine?
I'm a bit stressed
Why am I a bit stressed?
Actually, I lied, I'm very stressed
What do I have to be stressed about? Me of all people???
HA! I dunno...I guess I need stress to keep my blood flowing...or maybe there is a real reason...
I'm stressed because I have a migraine...
I have a migraine because I am stressed...
How do I resolve that problem?
The 8 hour Tylenol I took 6 hours ago hasn't kicked in yet, but apparently my second wind did...
I lost my sandostatin...but I know where I put it...
I searched frantically for over an hour without success...
So...my body aches from the madness of throwing things around and I can't get comfortable in bed, on the couch, or anywhere...
My images aren't uploading on the G-PACT website...
The more I try to fix it, the worse I make it...
The harder I look for my sandostatin, the harder it is to find...
The more I try to fall asleep, the more awake I become...
The more I try to shut my mind down for the night, the more I start thinking about...
The more TV I watch to get my mind off of things, the more I am reminded of how I am wasting precious time...
And then that stresses me out...because I have a lot to do and not enough time...
I can't waste time...
Who needs sleep anyway??
I do...we all know...I do...
I'll eventually crash...
But for now...I might as well spend my awake stressing out time on getting something accomplished to help reduce my stress...
Maybe that will get rid of my migraine...
But looking at this computer contributes to my migraine...
And not working on my projects adds to my stress...
If my migraine is gone, I won't be so stressed about having it...
Then my stress would also go down...
And then I'd be able to sleep soundly...
If only I could find my sandostatin...
And the website would cooperate...
And the Tylenol would kick in...
And life would stop for a few weeks and let me catch up with it...
In other words...I may never sleep soundly again...
That thought makes me tired...
I think I might be able to sleep now...
You got me...
I don't know...
I have a migraine...
Why do I have a migraine?
I'm a bit stressed
Why am I a bit stressed?
Actually, I lied, I'm very stressed
What do I have to be stressed about? Me of all people???
HA! I dunno...I guess I need stress to keep my blood flowing...or maybe there is a real reason...
I'm stressed because I have a migraine...
I have a migraine because I am stressed...
How do I resolve that problem?
The 8 hour Tylenol I took 6 hours ago hasn't kicked in yet, but apparently my second wind did...
I lost my sandostatin...but I know where I put it...
I searched frantically for over an hour without success...
So...my body aches from the madness of throwing things around and I can't get comfortable in bed, on the couch, or anywhere...
My images aren't uploading on the G-PACT website...
The more I try to fix it, the worse I make it...
The harder I look for my sandostatin, the harder it is to find...
The more I try to fall asleep, the more awake I become...
The more I try to shut my mind down for the night, the more I start thinking about...
The more TV I watch to get my mind off of things, the more I am reminded of how I am wasting precious time...
And then that stresses me out...because I have a lot to do and not enough time...
I can't waste time...
Who needs sleep anyway??
I do...we all know...I do...
I'll eventually crash...
But for now...I might as well spend my awake stressing out time on getting something accomplished to help reduce my stress...
Maybe that will get rid of my migraine...
But looking at this computer contributes to my migraine...
And not working on my projects adds to my stress...
If my migraine is gone, I won't be so stressed about having it...
Then my stress would also go down...
And then I'd be able to sleep soundly...
If only I could find my sandostatin...
And the website would cooperate...
And the Tylenol would kick in...
And life would stop for a few weeks and let me catch up with it...
In other words...I may never sleep soundly again...
That thought makes me tired...
I think I might be able to sleep now...
NEED ZINC!!!!!!!!!!!!
Ok, so I seriously need some more zinc...
I have been working on the G-PACT website all day and the crazy thing won't upload my images, so I'm just getting that stupid red "X" in a box when I try to publish!!! What's REALLY annoying is that I KNOW what's wrong and how to fix it, but not completely...it's complicated to explain...I've tried all the options and it's not working, and now I realize it may be the publishing software (ftp) and not Dreamweaver that needs to be worked on...sigh...so I yanked out most of my hair. Now I need to increase my zinc supplements to grow it all back...
And to top it off....how do you lose something when you KNOW exactly where you put it??? I took out my last vial of sandostatin and put it by my computer. I swear...that's where I put it. Yes I did!!! I know I did!! Then I went to take it and it's not there??? Not only is it not there, but it's not ANYWHERE!!! I tore this place apart looking over every square inch and had no success!!! Dinner without sandostatin!!! Hopefully, I will receive a new shipment today (Friday, yah, I'm up late...). I was not happy. I even looked inside my tostitos and pretzel bags since I had been snacking on those...in pockets of close I didn't wear today, dug through the trash...quite an event since I just cleaned my fridge out and there was all kinds of gooey stuff in there, pulled off my couch pillows, checked Spunky's cage, went through all my med bottles, checked every shelf, table, drawer, and container I own...even if I haven't opened it in months...and it's just nowhere to be found!!! I grabbed a bag of Starburst and looked in there...it wasn't there...I threw it across the room...then I had a bunch of candy to pick up off the floor. I knew I shouldn't haven't cleaned...everytime I do I lose something...but I swear...I know where I put this sandostatin!! Do you think vampires like sandostatin and steal that from me too? huh huh??
I seriously need some sleep...I'm a little stressed out...a little?? I have a migraine and pain all over. I have ever since the sandostatin took off somewhere and I spent over an hour scrambling around looking for it. My body can't handle that much activity so it's freakin' on me. That's desperation...the stuff is like GOLD to me. I'd rather lose almost anything else...sigh...it's a new day already...hopefully things will be better whenever I decide to drag myself out of bed...
I have been working on the G-PACT website all day and the crazy thing won't upload my images, so I'm just getting that stupid red "X" in a box when I try to publish!!! What's REALLY annoying is that I KNOW what's wrong and how to fix it, but not completely...it's complicated to explain...I've tried all the options and it's not working, and now I realize it may be the publishing software (ftp) and not Dreamweaver that needs to be worked on...sigh...so I yanked out most of my hair. Now I need to increase my zinc supplements to grow it all back...
And to top it off....how do you lose something when you KNOW exactly where you put it??? I took out my last vial of sandostatin and put it by my computer. I swear...that's where I put it. Yes I did!!! I know I did!! Then I went to take it and it's not there??? Not only is it not there, but it's not ANYWHERE!!! I tore this place apart looking over every square inch and had no success!!! Dinner without sandostatin!!! Hopefully, I will receive a new shipment today (Friday, yah, I'm up late...). I was not happy. I even looked inside my tostitos and pretzel bags since I had been snacking on those...in pockets of close I didn't wear today, dug through the trash...quite an event since I just cleaned my fridge out and there was all kinds of gooey stuff in there, pulled off my couch pillows, checked Spunky's cage, went through all my med bottles, checked every shelf, table, drawer, and container I own...even if I haven't opened it in months...and it's just nowhere to be found!!! I grabbed a bag of Starburst and looked in there...it wasn't there...I threw it across the room...then I had a bunch of candy to pick up off the floor. I knew I shouldn't haven't cleaned...everytime I do I lose something...but I swear...I know where I put this sandostatin!! Do you think vampires like sandostatin and steal that from me too? huh huh??
I seriously need some sleep...I'm a little stressed out...a little?? I have a migraine and pain all over. I have ever since the sandostatin took off somewhere and I spent over an hour scrambling around looking for it. My body can't handle that much activity so it's freakin' on me. That's desperation...the stuff is like GOLD to me. I'd rather lose almost anything else...sigh...it's a new day already...hopefully things will be better whenever I decide to drag myself out of bed...
Wednesday, January 21, 2009
Dump the dumping!
So, I started on the long acting sandostatin on Monday...let's just say it DIDN'T work! I had some symptoms Monday night and Tuesday night a full blown attack! I called my coordinator and we are going back to the short acting, 3x/day injections. This is a bit discouraging because I bruise so easily and it's just a pain to do it 3x, half an hour before meals, but it works and it's worth it. I don't want to go through that severe dumping attack again!!! I was starting to figure out the balance between side effects, meds, when to take meds to prevent side effects, etc so I know where to restart on the short acting again and should get it under control pretty quickly again. My coordinator is going to ask them to overnight it to me and I hope they can. Fortunately, I still have enough for today!
Still trying to move on the G-PACT site. I've had some setbacks, but still making good progress on that and have some good ideas started for the awareness video too. Lots to do...so little time!
Naptime again, plus I want to take my morning dose of sandostatin...I just can't knock this crazy fatigue from the anemia. My color is much better, but I still feel really sluggish. Of course, that could be in part due to the dumping flare up yesterday, but I have been feeling like this for quite a while. I've spent a lot of time in my bed instead of on the couch which is always a sign that I'm not feeling well...usually I prefer to hang with the Spunk in my den. Seems like he's having a lazy day too today. He just stuck his nose out of his igloo and yawned at me!!! He's such a babe...I need to clean his cage. How can one little pig make such a mess and poop so much??? I guess he doesn't have much else to do besides eat, sleep, and poop...but he's so darn cute...
Still trying to move on the G-PACT site. I've had some setbacks, but still making good progress on that and have some good ideas started for the awareness video too. Lots to do...so little time!
Naptime again, plus I want to take my morning dose of sandostatin...I just can't knock this crazy fatigue from the anemia. My color is much better, but I still feel really sluggish. Of course, that could be in part due to the dumping flare up yesterday, but I have been feeling like this for quite a while. I've spent a lot of time in my bed instead of on the couch which is always a sign that I'm not feeling well...usually I prefer to hang with the Spunk in my den. Seems like he's having a lazy day too today. He just stuck his nose out of his igloo and yawned at me!!! He's such a babe...I need to clean his cage. How can one little pig make such a mess and poop so much??? I guess he doesn't have much else to do besides eat, sleep, and poop...but he's so darn cute...
Monday, January 19, 2009
The Saga Continues
I started the monthly Sandostatin today. I have had a little dumping tonight after dinner, but not much. My hope is that it is just taking a little bit of time to fully kick in since I didn't get one big dose at once right before dinner. Please pray that it will be as effective in the end.
I lost another transplant friend the other day, the 15th of January. I have started to lose count at this point. So many I have been very, very close to, some I have know from occasional conversations, but regardless we are all connected and like family. Kelly is one I was close to as she was my roommate during my second, three week, admission to UPitt in January 2005. We spoke frequently in clinic and she and her mom have followed me and my story for years. We were both in the hospital at the same time Christmas 2005 and I remember she dropped by and visited me before heading home. I just saw her a few months ago in 7W and we got a chance to catch up. She passed away of liver failure and anemia. Please keep her family in your prayers. She has two children.
I have started progress on G-PACT's awareness video by meeting with my brother in law who will probably be producing it. He had some great ideas and got my mind rolling in the right direction. Please pray that we can make something really powerful to share our stories and need for awareness within the next few weeks. Also, pray for me to have the strength and energy to have a powerful launch to our new website and complete all the design work needed for our media awareness kit.
I am so thankful to the many people who are jumping on board to help with G-PACT and getting involved in other ways. It's encouraging to see the growth and know that we are having such an impact. This helps me get through the tough days and pushes me to keep fighting when often the cause seems impossible, overwhelming, or too emotionally challenging.
No funny puns tonight. I'm really tired...maybe tomorrow.
I lost another transplant friend the other day, the 15th of January. I have started to lose count at this point. So many I have been very, very close to, some I have know from occasional conversations, but regardless we are all connected and like family. Kelly is one I was close to as she was my roommate during my second, three week, admission to UPitt in January 2005. We spoke frequently in clinic and she and her mom have followed me and my story for years. We were both in the hospital at the same time Christmas 2005 and I remember she dropped by and visited me before heading home. I just saw her a few months ago in 7W and we got a chance to catch up. She passed away of liver failure and anemia. Please keep her family in your prayers. She has two children.
I have started progress on G-PACT's awareness video by meeting with my brother in law who will probably be producing it. He had some great ideas and got my mind rolling in the right direction. Please pray that we can make something really powerful to share our stories and need for awareness within the next few weeks. Also, pray for me to have the strength and energy to have a powerful launch to our new website and complete all the design work needed for our media awareness kit.
I am so thankful to the many people who are jumping on board to help with G-PACT and getting involved in other ways. It's encouraging to see the growth and know that we are having such an impact. This helps me get through the tough days and pushes me to keep fighting when often the cause seems impossible, overwhelming, or too emotionally challenging.
No funny puns tonight. I'm really tired...maybe tomorrow.
Saturday, January 17, 2009
Ok, so I've been staring at this damn computer screen all day and not sure how much I got accomplished, other than a headache. I've been nit-picking on the G-PACT site because when I tried to ftp it to test it on the web, it screwed up my files. Then our home server went down and I had no internet access for a couple hours...tragedy!! I was still able to do some work on the site...but it was all slow today because it was nitpicky stuff. I did get the text written for the home page, and a couple other pages done too. I had to fix some links and banners though. Now I have to figure out what happened to make me mess up my files and figure out an easier, faster way to fix my pages. I don't want to do them one by one, and there's no reason I should have to. Just a little reading on Dreamweaver should help me figure it out. I think I may actually be able to get it launched within two weeks, at least the most crucial portions. I'm excited. It looks really nice. Unfortunately, perhaps the biggest hangup is my writer is in the hospital. I can do all the writing too, but it adds to the workload tremendously and I was looking for a fresh style for the new site. I'll work on the portions I was planning to do anyway, and hopefully she will be able to return to it soon. I am feeling quite overwhelmed...but I can't let it get to me and just take it one page at a time and one project at a time! I am seriously feeling brain fried and will probably take the rest of the evening off just to rest. If not, my mind will bizz all night and I won't be well rested for kidMin and church in the morning, or Life Group in the evening!
As for my health, I started on a new medication yesterday which seems to be helping a little bit I think, although I am still in a good deal of pain and it limits what I eat. I never have an appetite, regardless of whether I "feel" bad or not, but now that I have so much pain after eating it makes my appetite even lower. It's hard to know if I am improving or not because over the past 8 weeks or so I have had improvements and then gotten worse again. A few more days will give me a better idea. I have started making changes to my medicine protocol with meds I am allowed to mess with. I'm figuring out the best times to take new things, how much of some to take, when not to take them, etc. My whole system has changed now since starting the sandostatin, so I have side effects and other issues I have to figure out how to manage now. It seems to be working a little bit so far, but again I just started and a few more days will give me a better idea. Oh, the ups and downs and unknowns!
I have had more energy this week and my color is a lot better,. Hopefully this means the iron infusion is kicking in and my levels are going back up. If I could feel like I did mid-week all the time, I could manage life a lot better. I tend to be more tired on the weekends and at the end of the week. I think this may be due to the fact that I get my Arinesp on Mondays and I am coming down on it. I'm thinking about changing days and getting it on Fridays instead since Sun-Tuesday are my busiest days, and right now I have a tough time getting through Sunday and Monday. I'm not sure if that will make a difference or not. I have this ongoing feeling that my eyes are tired, even if my body isn't. Sometimes I know I can't sleep, but I also can't keep my eyes open. I've had this since transplant and really think it's just related to meds. Basically, I can feel very very very sleepy without actually being tired...if that makes any sense!! I'm still having A LOT of body pain related to the cold, probably. My left leg/knee/ankle hurts really bad. I'm mostly just taking Tylenol and Fentanyl. I just feel like my bones could snap at any moment...there's definitely a lot of bone pain!
I'm enjoying the new computer and it's helping me get SSSSSSOOOOO much accomplished now. It's amazing the difference it has made in my ability to get things done! Once I get the website where it needs to be, I will start working on G-PACT's media/awareness kit. I need to design new brochures, business cards, a fact sheet, and some other things in a nice package. I need to have all of this done by the DDNC in DC on March 8-9, so it's major crunch time!!! Hopefully, my health will hold up enough for me to be able to get it all done. We have several new people interested in volunteering, and that's very encouraging! We get so much more accomplished with each new volunteer that comes along.
So, besides the website I've enjoyed my nights watching ALF...my favorite character. I am almost done with season two!! :( I watch a good deal of Hulu too. I love the classics like Mary Tyler Moore, Mr. Ed, Father Knows Best, Bewitched, I Dream of Jeannie, Growing Pains, Dick Van Dyke, The Facts of Life, Andy Griffith, etc....pretty much any of those sitcoms from the 50's-early 90's. I'm not a fan of I Love Lucy though, believe it or not...I'm sorry, but adults really are not THAT stupid or childish...at least I hope not...and why does Ricky always fall for Lucy sneaking in shows, and why does Lucy always keep trying???
I'm fortunately starting to kick the Facebook addiction. Yeah, I'm still on several times a day, but don't spend hours on end on it doing stuff. It really has become more of a reach out avenue for me than a social thing. It's both, but now I find myself doing more G-PACT related stuff and promotion than playing. It's been an awesome way to meet people all over the world with GP and help them out. I get a lot of messages from people with questions who have no other connections. Most of my friend requests are now coming from people who have GP and need to connect with someone. The groups are growing, and our cause has over 600 people in it too!
Well, I just took my meds and smell the burgers cooking...Saturday night is always burger night around here. It has been my entire life! There's no surprise! Time to go chow down...YUMMY! Spunky likes burger night too because I manage to sneak some lettuce to him...;)
As for my health, I started on a new medication yesterday which seems to be helping a little bit I think, although I am still in a good deal of pain and it limits what I eat. I never have an appetite, regardless of whether I "feel" bad or not, but now that I have so much pain after eating it makes my appetite even lower. It's hard to know if I am improving or not because over the past 8 weeks or so I have had improvements and then gotten worse again. A few more days will give me a better idea. I have started making changes to my medicine protocol with meds I am allowed to mess with. I'm figuring out the best times to take new things, how much of some to take, when not to take them, etc. My whole system has changed now since starting the sandostatin, so I have side effects and other issues I have to figure out how to manage now. It seems to be working a little bit so far, but again I just started and a few more days will give me a better idea. Oh, the ups and downs and unknowns!
I have had more energy this week and my color is a lot better,. Hopefully this means the iron infusion is kicking in and my levels are going back up. If I could feel like I did mid-week all the time, I could manage life a lot better. I tend to be more tired on the weekends and at the end of the week. I think this may be due to the fact that I get my Arinesp on Mondays and I am coming down on it. I'm thinking about changing days and getting it on Fridays instead since Sun-Tuesday are my busiest days, and right now I have a tough time getting through Sunday and Monday. I'm not sure if that will make a difference or not. I have this ongoing feeling that my eyes are tired, even if my body isn't. Sometimes I know I can't sleep, but I also can't keep my eyes open. I've had this since transplant and really think it's just related to meds. Basically, I can feel very very very sleepy without actually being tired...if that makes any sense!! I'm still having A LOT of body pain related to the cold, probably. My left leg/knee/ankle hurts really bad. I'm mostly just taking Tylenol and Fentanyl. I just feel like my bones could snap at any moment...there's definitely a lot of bone pain!
I'm enjoying the new computer and it's helping me get SSSSSSOOOOO much accomplished now. It's amazing the difference it has made in my ability to get things done! Once I get the website where it needs to be, I will start working on G-PACT's media/awareness kit. I need to design new brochures, business cards, a fact sheet, and some other things in a nice package. I need to have all of this done by the DDNC in DC on March 8-9, so it's major crunch time!!! Hopefully, my health will hold up enough for me to be able to get it all done. We have several new people interested in volunteering, and that's very encouraging! We get so much more accomplished with each new volunteer that comes along.
So, besides the website I've enjoyed my nights watching ALF...my favorite character. I am almost done with season two!! :( I watch a good deal of Hulu too. I love the classics like Mary Tyler Moore, Mr. Ed, Father Knows Best, Bewitched, I Dream of Jeannie, Growing Pains, Dick Van Dyke, The Facts of Life, Andy Griffith, etc....pretty much any of those sitcoms from the 50's-early 90's. I'm not a fan of I Love Lucy though, believe it or not...I'm sorry, but adults really are not THAT stupid or childish...at least I hope not...and why does Ricky always fall for Lucy sneaking in shows, and why does Lucy always keep trying???
I'm fortunately starting to kick the Facebook addiction. Yeah, I'm still on several times a day, but don't spend hours on end on it doing stuff. It really has become more of a reach out avenue for me than a social thing. It's both, but now I find myself doing more G-PACT related stuff and promotion than playing. It's been an awesome way to meet people all over the world with GP and help them out. I get a lot of messages from people with questions who have no other connections. Most of my friend requests are now coming from people who have GP and need to connect with someone. The groups are growing, and our cause has over 600 people in it too!
Well, I just took my meds and smell the burgers cooking...Saturday night is always burger night around here. It has been my entire life! There's no surprise! Time to go chow down...YUMMY! Spunky likes burger night too because I manage to sneak some lettuce to him...;)
Thursday, January 15, 2009
Not quite answers....
Well, the results of the cultures came back, but I still have no answers! Everything was negative! The doctor changed my medication to something three times as strong as what I am on now and I am supposed to return in 2 weeks.
I was up late last night with A LOT of pain and very sick. Kareem stated that he doesn't know what to do unless I come to Pittsburgh for him to check me out again. I just don't want to take another trip right now, but I'm not sure how much longer I can deal with it either. I'm going to wait until Monday trying the new med and see if it helps. If not, I will try to get into my local GI soon to have him check everything out.
On Monday I will start on the once a month injection of Sandostatin. It will be nice to not have to inject myself three times a day and I am hopeful it will be more effective in between meals.
Since I was up late sick last night, I have spent most of the day today just resting and sleeping. I have done some work on the website in between naps. I love Dreamweaver and am finding more and more to do with it! I'm glad I switched to it! Our website is going to rock!
I woke up this morning to snow...I didn't know it was supposed to snow...Spunky has been hanging out in his igloo a lot today!
I really don't have much more to say. My refrigerator is growing some scientific experiments and I really need to clean it out...
I was up late last night with A LOT of pain and very sick. Kareem stated that he doesn't know what to do unless I come to Pittsburgh for him to check me out again. I just don't want to take another trip right now, but I'm not sure how much longer I can deal with it either. I'm going to wait until Monday trying the new med and see if it helps. If not, I will try to get into my local GI soon to have him check everything out.
On Monday I will start on the once a month injection of Sandostatin. It will be nice to not have to inject myself three times a day and I am hopeful it will be more effective in between meals.
Since I was up late sick last night, I have spent most of the day today just resting and sleeping. I have done some work on the website in between naps. I love Dreamweaver and am finding more and more to do with it! I'm glad I switched to it! Our website is going to rock!
I woke up this morning to snow...I didn't know it was supposed to snow...Spunky has been hanging out in his igloo a lot today!
I really don't have much more to say. My refrigerator is growing some scientific experiments and I really need to clean it out...
Tuesday, January 13, 2009
A day to forget
Today is a day to just forget...the inefficient lab did not have my labs completed yet from Monday!! And the cultures from the derm on Thursday weren't done yet either...so I wait.
I'm still having a lot of pain with bowel movements and hopefully the cultures will indicate the cause of that. It's been a really tough day. I feel worse than I have in a long time with a really bad headache and pain all over my body. Tylenol and narcs aren't touching it. Because of the headache, I also have a lot of nausea. My hands have been cramping up and getting stuck too which could indicate an imbalance in electrolytes or be part of a possible autoimmune condition we have yet to find. I'm exhausted, but having trouble sleeping because of the headache, pain, and overall discomfort. I'm a little nervous about what my crit level will be this week though. There will definitely be lab results tomorrow...if not, someone is getting shot...so Rachelle, if u find any more strange blood in your office...
We really have to get this under control. It amazes me that I am on so much iron, weekly injections to boost my counts, copper to help me absorb iron, had an iron infusion three weeks ago, and my counts are still so low. It's not that it's all that uncommon for small bowel transplant patients to have this problem...the question is...why now? Other than on occasion, this wasn't a big issue for me until this past August when for some odd reason my copper levels were dangerously low preventing the absorption of iron. I didn't even know our bodies NEEDED copper?? I wasn't even on any iron supplements at all for a year. Now that the dumping is better controlled, I'd think my absorption would have improved too...??? I am able to be less active now than a year ago...it's not supposed to be that way!
Actually, menatally I have improved over the year. I am thinking more clearly overall and able to talk, carry on conversations, learn, understand, and concentrate better on things with the adjustment of some of my meds, and my true personality comes out more frequently now (except on really bad days), but physically I am able to do less. I can be thankful for the one...I think the mental battles are far more challenging to deal with the physical ones, but I have at least three big events for G-PACT coming up this year that will require travel to DC, NYC, and Chicago with significant physical activity, so I hope to get the physical side on the up so I can be as active as possible in all our activities!
I'm signing off to watch more ALF and sad that I'm almost on the last DVD...
Hopefully I will have some news to report tomorrow.
I'm still having a lot of pain with bowel movements and hopefully the cultures will indicate the cause of that. It's been a really tough day. I feel worse than I have in a long time with a really bad headache and pain all over my body. Tylenol and narcs aren't touching it. Because of the headache, I also have a lot of nausea. My hands have been cramping up and getting stuck too which could indicate an imbalance in electrolytes or be part of a possible autoimmune condition we have yet to find. I'm exhausted, but having trouble sleeping because of the headache, pain, and overall discomfort. I'm a little nervous about what my crit level will be this week though. There will definitely be lab results tomorrow...if not, someone is getting shot...so Rachelle, if u find any more strange blood in your office...
We really have to get this under control. It amazes me that I am on so much iron, weekly injections to boost my counts, copper to help me absorb iron, had an iron infusion three weeks ago, and my counts are still so low. It's not that it's all that uncommon for small bowel transplant patients to have this problem...the question is...why now? Other than on occasion, this wasn't a big issue for me until this past August when for some odd reason my copper levels were dangerously low preventing the absorption of iron. I didn't even know our bodies NEEDED copper?? I wasn't even on any iron supplements at all for a year. Now that the dumping is better controlled, I'd think my absorption would have improved too...??? I am able to be less active now than a year ago...it's not supposed to be that way!
Actually, menatally I have improved over the year. I am thinking more clearly overall and able to talk, carry on conversations, learn, understand, and concentrate better on things with the adjustment of some of my meds, and my true personality comes out more frequently now (except on really bad days), but physically I am able to do less. I can be thankful for the one...I think the mental battles are far more challenging to deal with the physical ones, but I have at least three big events for G-PACT coming up this year that will require travel to DC, NYC, and Chicago with significant physical activity, so I hope to get the physical side on the up so I can be as active as possible in all our activities!
I'm signing off to watch more ALF and sad that I'm almost on the last DVD...
Hopefully I will have some news to report tomorrow.
Monday, January 12, 2009
A Presidential Ghost with Funky Hair
Bad hair day? Bad pic?
Nope....normal hair day (and I did no pic editing...)...I'm not picky about my hair...I like the rough, unkempt look...besides, a ride in the Jeep with the top off in the warm weather screws up any efforts to try to have decent hair. That's why I chopped it all off in 2001 right after I bought Blue Lightning in the first place. I even had (or tried to have) it blue at one point, but it came out a ghastly green...then turned yellow, then turned blonde. The blonde was very cool...and my hair was not growing at all at the time so it all stuck around for a good 10 months!! The problem with brown hair is it's so hard to get the perfect color. The rainbow turned out well for my 23rd b-day party though. Wow, that was a long time ago!!!
That is what I look like right now...
That is what I look like most of the time I am on my couch...
Sometime I will post what I look like when I'm blogging from bed...I know you can't wait...
That is the image of the G-PACT president working from the home office of the leading non-profit for GP and pseudo-obstruction worldwide. Impressive accomodations, huh? Comfy at least!! =)
I look a little freakishly ghostly today though...hope no one has called the Ghostbusters on me yet...
Not much new news today. I called my derm and the results of my viral and bacterial cultures aren't back yet. My transplant coordinator also did not have my lab results from this morning, so I don't know what my counts are this week yet. I should hear from both offices tomorrow with results. I've had a headache for three days and it's a lot worse today. I don't know if it's related to a low crit or the general aches and pains I deal with on a regular basis, but I really suspect low crit because I am feeling very sick in general.
I'm hanging in there. Mondays are usually tiring days for me because I get up early to get my labs drawn, then in the afternoon I drive to Hershey to get my injections. It's also the day after church, kidMin, and Life Group so that makes it extra tiring.
Tonight we had a G-PACT board meeting. I'm usually really pumped after meetings and ready to run with the to-do list late into the night, but just don't have the umph for it tonight. I'll get started tomorrow. I'm really pumped about the new website, but also completely overwhelmed by the amount of work I am bringing on myself...typical...it will be massive and very informative, and we are branching beyond just GP and into intestinal pseudo-obstruction since the conditions are so commonly connected. That means I am adding a whole pseudo-obstruction section on top of the GP pages, plus a pediatric site, and a number of other new sections. Thanks to the volunteer(s) helping me research and write! The design work is plenty!
It's really cool to see the progress. Even if at times it seems like it's an endless process trying to break through the motility "glass ceiling" I realize when I look back over the years that we really have made a good deal of progress and the progress gets faster and more productive with time. We are banding together and bringing people together throughout the country, and ultimately, throughout the world. It's really cool to connect with people from Australia, Germany, England, Italy, Spain, Canada, Switzerland, Poland, and other countries throughout the world who are all suffering from the same condition and seeking the same answers. I love being on the forefront of helping to fight this not only in the US, but throughout the world. It helps me deal with the tough times when I know I can use my situation to make a difference in the lives of others and the world of GP and pseudo-obstruction.
There will be more news coming on the G-PACT front. If you live in the DC area and are interested in lobbying at the DDNC (Digestive Diseases National Coalition) on March 8-9, send me an e-mail or message. G-PACT is getting together a small group to speak to senators about some of our initiatives, changes we suggest for the FDA approval process, two bill proposals, and overall awareness of GP and pseudo-obstruction. Top motility physicians will be there and major drug companies interested in motility. It's a great opportunity to really make our voices heard.
Several of us are working on putting together a nice awareness kit which will also be distributed to the media. If you live in NY, NJ, PA, and WY (of all states) we are particularly interested in your story as we are specifically lobbying to very interested senators and physicians in those states.
Well, Spunky is looking for his nighttime snack so I must go...but I will blog my health reports when I receive everything from both doc offices on Tuesday.
Night all....
C
Sunday, January 11, 2009
Sucking Blood
So...if you have followed my monkeygirl site for a while, you will know all about me. If not, check it out first...I'm not rehashing 9 years right here!! Well, technically if you read EVERYTHING it takes you back to 1994, but that could take a while...
But to catch you up since my last post on my home page...
I'm switching to Blogger for now because I am changing web design software and hope to, someday, redevelop my home page. I don't know how long that will be...and I have a new computer and did not want to put the old web software on this one. So, in order to keep my followers happy, I'll post updates here for now. My monkeygirl site will remain up as long as possible.
In my last update, I had mentioned some major changes Kareem had made to my treatments. He started me on Sandostatin (aka Octreotide) to help treat my dumping syndrome. I am thrilled to report that it is working! It's amazing!! I have had minimal dumping issues at all since I started it three weeks ago! I take an injection 3x a day half an hour before meals. Since the short-acting is working, they will start me on a 28 day long-acting version in a week so I will go to clinic once every 28 days to receive one injection, rather than doing it myself 3x a day. I am hoping it will be better controlled on the long-lasting even because after 4 hours, the short acting does wear off and I cannot eat again until my next dose. Hopefully, the long lasting will remain steady in my system allowing me to snack more frequently in between meals.
On a bad note, my hemotocrit and hemoglobin levels have been really low still. I had an iron infusion three weeks ago, and my crit actually came back even lower a week later...at transfusion levels once again. I am still receiving Arinesp injections once a week and my insurance company will approve them again. Kareem decreased my immunosupression drugs, but in spite of that it appears that my bone marrow is just not producing adequate blood cells. This has left me extremely weak and tired a lot. I also have a lot of body pain, stiffness, and cramping because of the cold weather. I am ready for spring! I've had several days recently I haven't even gotten out of bed, and some days I'm only up for short periods, but have fortunately been entertained by the Season 1 and 2 ALF DVD's I got for Christmas :). HA! The chronic fatigue is discouraging to say the least. However, I am feeling better simply because the dumping is under much better control. If we can fix the iron issues, I think I'll be pretty darn good!
I also saw a doctor on Thursday for another ongoing problem. Ever since November I have had a lot of pain and itching with bowel movements. It was finally discovered in December by Kareem that I had eczema and ulcers, suspected to be an allergy to the toilet paper I have used for years?????!!! However, in spite of no longer using it, the problem has continued. I went to see a dermatologist who stated that eczema with ulcers is rarely just eczema, and said that with my immunosuppression, he suspects I have developed a virus or bacteria that has created these problems. If it does end up being viral, it could explain the ongoing, random low grade fevers and body aches. It makes sense because the fevers started not long before this new problem developed. If it is one of several viruses or bacteria he mentioned (staph, strep, and even an immunosuppression related herpes), the symptoms can be treated as they come, but the virus will never be cured. This is a bit discouraging too...just another thing to add to my list of issues to deal with for life. At least there is nothing life-threatening or major right now, just a lot of nuisances for someone trying to move on with life! And thoughts for the future as each new medication related complication develops...knowing each day the steroids are eating away my bones, the prograf is impacting my kidneys, the combo of about 30 meds up to 5x a day is hard on my liver...but I just live each day for what it gives me and what I can give to it, and the future will come as it does...and at least I have a future now!
I did actually have several days of energy earlier in the week and got quite a bit done. I have a nice start on the new G-PACT website, have the G-PACT finances in the hands of the accountant and she is now doing everything, I caught up on past correspondence, and started some new projects as well. It appears we have enough enough funding to exhibit at DDW in Chicago in May/June, so that is encouraging, although it will pretty much deplete our budget so we are still seeking donors! If possible, consider contributing at www.g-pact.org/findonations.htm. It is AMAZING the increase in funding we have seen over the past year and encouraging to know that what we do is making an impact on the lives of so many. We still have a long ways to go though to fight this...there just isn't enough attention paid to these potentially life-threatening conditions.
In addition to DDW, several of us are planning to lobby in DC for better drugs for GI motility and more funding for awareness. That event will take place March 8-9. On top of that, we have some major plans for the end of August which are still being worked out behind the scenes, but look very promising.
Please continue to pray for Karis, who is still really sick in the hospital and will have surgery to open her ostomy again...this time for life. She just had surgery last week to have a central line placed in her inferior venus cava as her ONLY remaining venous access. Another friend, Julie, who was transplanted in Miami on Oct. 25 is struggling in the ICU with a lot of breathing problems and possible rejection. And, Joe...Joe passed away on December 23 after almost a two year battle with lung cancer. As a 54 yo, non-smoker and marathon runner, it was shocking he even developed it in the first place. He had recovered amazingly well, but as we had discussed, the odds of his type of cancer coming back, and with a vengeance, were extremely high at around 90%.
I still love doing what I do for LCBC, but have not been doing it as much lately because of being sick. Now that the dumping is better managed, I really hope that the doctors can get my blood counts stabilized so I will have a lot more energy to do so many of the things I want to do. Right now, I have had to scale back so many social and life activities that it's been really discouraging. I feel like I have taken a step backwards. I am hopeful that this iron problem is temporary and will eventually resolve on it's own, or adjust to the changes my doctors have made.
And with that note, I'm signing off for now...I will try to be a better blogger than I am webmaster...
But to catch you up since my last post on my home page...
I'm switching to Blogger for now because I am changing web design software and hope to, someday, redevelop my home page. I don't know how long that will be...and I have a new computer and did not want to put the old web software on this one. So, in order to keep my followers happy, I'll post updates here for now. My monkeygirl site will remain up as long as possible.
In my last update, I had mentioned some major changes Kareem had made to my treatments. He started me on Sandostatin (aka Octreotide) to help treat my dumping syndrome. I am thrilled to report that it is working! It's amazing!! I have had minimal dumping issues at all since I started it three weeks ago! I take an injection 3x a day half an hour before meals. Since the short-acting is working, they will start me on a 28 day long-acting version in a week so I will go to clinic once every 28 days to receive one injection, rather than doing it myself 3x a day. I am hoping it will be better controlled on the long-lasting even because after 4 hours, the short acting does wear off and I cannot eat again until my next dose. Hopefully, the long lasting will remain steady in my system allowing me to snack more frequently in between meals.
On a bad note, my hemotocrit and hemoglobin levels have been really low still. I had an iron infusion three weeks ago, and my crit actually came back even lower a week later...at transfusion levels once again. I am still receiving Arinesp injections once a week and my insurance company will approve them again. Kareem decreased my immunosupression drugs, but in spite of that it appears that my bone marrow is just not producing adequate blood cells. This has left me extremely weak and tired a lot. I also have a lot of body pain, stiffness, and cramping because of the cold weather. I am ready for spring! I've had several days recently I haven't even gotten out of bed, and some days I'm only up for short periods, but have fortunately been entertained by the Season 1 and 2 ALF DVD's I got for Christmas :). HA! The chronic fatigue is discouraging to say the least. However, I am feeling better simply because the dumping is under much better control. If we can fix the iron issues, I think I'll be pretty darn good!
I also saw a doctor on Thursday for another ongoing problem. Ever since November I have had a lot of pain and itching with bowel movements. It was finally discovered in December by Kareem that I had eczema and ulcers, suspected to be an allergy to the toilet paper I have used for years?????!!! However, in spite of no longer using it, the problem has continued. I went to see a dermatologist who stated that eczema with ulcers is rarely just eczema, and said that with my immunosuppression, he suspects I have developed a virus or bacteria that has created these problems. If it does end up being viral, it could explain the ongoing, random low grade fevers and body aches. It makes sense because the fevers started not long before this new problem developed. If it is one of several viruses or bacteria he mentioned (staph, strep, and even an immunosuppression related herpes), the symptoms can be treated as they come, but the virus will never be cured. This is a bit discouraging too...just another thing to add to my list of issues to deal with for life. At least there is nothing life-threatening or major right now, just a lot of nuisances for someone trying to move on with life! And thoughts for the future as each new medication related complication develops...knowing each day the steroids are eating away my bones, the prograf is impacting my kidneys, the combo of about 30 meds up to 5x a day is hard on my liver...but I just live each day for what it gives me and what I can give to it, and the future will come as it does...and at least I have a future now!
I did actually have several days of energy earlier in the week and got quite a bit done. I have a nice start on the new G-PACT website, have the G-PACT finances in the hands of the accountant and she is now doing everything, I caught up on past correspondence, and started some new projects as well. It appears we have enough enough funding to exhibit at DDW in Chicago in May/June, so that is encouraging, although it will pretty much deplete our budget so we are still seeking donors! If possible, consider contributing at www.g-pact.org/findonations.htm. It is AMAZING the increase in funding we have seen over the past year and encouraging to know that what we do is making an impact on the lives of so many. We still have a long ways to go though to fight this...there just isn't enough attention paid to these potentially life-threatening conditions.
In addition to DDW, several of us are planning to lobby in DC for better drugs for GI motility and more funding for awareness. That event will take place March 8-9. On top of that, we have some major plans for the end of August which are still being worked out behind the scenes, but look very promising.
Please continue to pray for Karis, who is still really sick in the hospital and will have surgery to open her ostomy again...this time for life. She just had surgery last week to have a central line placed in her inferior venus cava as her ONLY remaining venous access. Another friend, Julie, who was transplanted in Miami on Oct. 25 is struggling in the ICU with a lot of breathing problems and possible rejection. And, Joe...Joe passed away on December 23 after almost a two year battle with lung cancer. As a 54 yo, non-smoker and marathon runner, it was shocking he even developed it in the first place. He had recovered amazingly well, but as we had discussed, the odds of his type of cancer coming back, and with a vengeance, were extremely high at around 90%.
I still love doing what I do for LCBC, but have not been doing it as much lately because of being sick. Now that the dumping is better managed, I really hope that the doctors can get my blood counts stabilized so I will have a lot more energy to do so many of the things I want to do. Right now, I have had to scale back so many social and life activities that it's been really discouraging. I feel like I have taken a step backwards. I am hopeful that this iron problem is temporary and will eventually resolve on it's own, or adjust to the changes my doctors have made.
And with that note, I'm signing off for now...I will try to be a better blogger than I am webmaster...
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