This last weekend I had the wonderful opportunity to spread some Scleroderma Awareness in Seattle at The Great Wheel which was lit up in Teal for Scleroderma Awareness Month! Our Washington State chapter is such a great group of individuals dedicated to sharing knowledge about this disease.
Advocacy work such as this is truly my passion, and even though not one person was interested in learning more about the disease during their sunny excursion on the pier, I still had a blast! I even met Spider Man ;)
As many of you know I was hospitalized last week due to a quick onset of anemia. I have never before encountered this ailment and my doctors are quite puzzled as to why I have a sudden onset. My Iron, Hemoglobin, and Ferritin, seem to be plummeting out of the blue. We will probably have to do some further follow up such as an internal scope to check for possible internal bleeding as I must be losing all this blood from somewhere in my body. This issue can be quite common in Scleroderma patients so my doctors are not surprised, especially with all the bowl issues I have encountered lately. Unfortunately the SIBO situation has not improved even on the heavy antibiotics so my GI may have to come up with a different game plan in the near future; I see her again at the end of this month.
This week I started my iron infusions, as of now my doctor has ordered them to be received every five days! I am hoping that as I stabilize we can move to a more tolerable frequency such as once a month. I am receiving the infusions at a new center down the freeway from my house so I dont have to trek all the way to the university every five days. This new center is amazing and I am totally in love with all the nurses! Everyone was so friendly and excited to have a patient with a Power Port to practice on! I believe I was their first patient with a Port to arrive at this newly opened center. Luckily, they had a seasoned Port nurse, but all the rest had never accessed one before but were eager to learn and watch! It was rather fun having them all huddled in my small room to get a better look, I felt like I was giving a presentation to a class ;) And you all know how much the teacher in me loves that! The infusion went smoothly. Iron is odd because it looks like tar and leaves an odd caramel taste in your mouth. Luckily the infusions are very short and I am only at the center about an hour, so I was quickly on my way home! I let one of the excited young nurses de-access my port, she was so grateful to have a laid back patient to practice on -- while many people would call this "being a guinea pig" I truly don't think of it that way. I enjoy giving learning opportunities to the awesome medical professionals that take such good care of me. I loved how happy the nurse looked when she pulled out that large needle successfully!
I also wanted to take this opportunity to personally thank each and everyone of you who donated to my GoFundMe account. I have officially raised enough money to purchase a Portable Oxygen Concentrator! I am now free of heavy tanks that hinder my ability to partake in my favorite activities such as swing dancing, hiking, and traveling. I now have the ability to travel on planes, trains, and ferries; no longer locked in to my small hometown. I am so excited to start this new journey of breathing easy! Thank you all from the bottom of my heart! You have literally given me the gift of adventure!
Next week will be a busy one! I have another Iron Infusion, a Rituxan Infusion, and an appointment with my Rheumatologist; however, Saturday is the day I have been waiting for! The Seattle Scleroderma 5k will finally be here! Please contact me by email for more information regarding the walk or visit Scleroderma.org/washington and follow the 'special events' link to the Seattle "Into The Feature" walk! I look forward to seeing all of you there supporting myself, and this amazing cause!