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...