I've never really posted about my health problems on here before. But I've recently gotten a little bit of bad news, and I thought maybe it would help me. But before I get to my bad news, I think a little background is in order......
When I was 8 months pregnant with my daughter, I was diagnosed with ITP, which is an autoimune disease where the body targets the platelets in the blood. It made for a very complicated birth, especially considering I was being induced at 8 months, and my platelet count when they started inducing was below the critical level (30,000). With the help of an IvIg treatment, my counts were up higher in time for Zoe's birt. Zoe and I both survived and luckily she only had a temporary platelet production before her body fought back and corrected it. At the time, my Dr thought I my body would do the same an in 6 months time I would be back to normal.
As luck would have it, the high dose of steriods that I was on at the time slowly stopped working, and my platelet counts started falling. After 6 months, I was termed chronic and told that I would have it for the rest of my life. What did that mean? Well, with some treatments, I might find a remission of sorts, maybe even reach an almost normal level. BUT, I hd to understand what was happening, learn the warning signs that my counts may be too low, learn to deal with the low energy, deal with treatments, side effects and thanks to the lovely bruises -- look like a battered wife most of the time!
The worst part of all this for me was that my counts were staying pretty low, just above critical and that made my job unsafe about 90% of the time. At that time I worked as a jeweler for Paul Morelli Designs in Philly. I loved that job, love the jewelry that I made every day. The day the Dr told me that I may never be able to work in jewelry like I did before ITP was the day my heart broke. I remember I kept thinking, " what am I going to do now?" Being a jeweler was such a huge part of me, my life, it made me happy, it was what I was good at.
I focused on my daughter and husband, learned more about ITP, treatments and went for my weekly blood test. I felt lost a lot, like something big was missing from my life. I very mcuh enjoyed being a stay at home mom, but I missed making jewelry. Depression, frustration, aggrevation. In the meantime, I tried another treatment and only got minimal results. Then my Dr and I agreed to try and just watch and see where I would maintain without treatment. 40,000 was my magic number (the low end of normal is 150,000).
Still with me?
Anyway, I started makign some jewelry pieces, avoiding my saw frame and flex shaft, sticking with beads, wire and pliers. My husband started taking the pieces I made to work and selling them. Requests started coming in and my line started to expand. I felt better, but something was still missing, but not for long. Turns out my husband worked with a woman who's son was working on a wonderful new website that she thought I might be interested in. A few weeks later Lance (husband) calls and tells me to go to http://www.etsy.com/. A few minutes there and I was signing up for an account. The site grew, items were sold, my line expanded even more, and I was well on my way with my brand new business!
For almost a year now, I was enjoying a sort-of remission with my ITP. I had endured over a year of chemo treatments for my ITP (once every 3 months), and the side effects that went with it. I found support in Etsy, confort in the forums from new friends that I had made. It gave me the distraction I needed to forget about the side effects and the treatments for a while. During my remission, I concentrated on my line of jewelry, trying to produce more, learn new techniques, fix my shop, promote, sell at local craft shows. My business was slowly growing, and we were all enjoying it.
On Monday, I went for my usual 3 month check in with my hematologist and got some not so nice news. My platelet count had dropped significantly, from 130,000 to 60,000. Time to start looking into what we're going to try next. Time to get ready for the bruises, etc. My Dr wants me to consider a new drug that is expected to pass FDA approval in a month or two. AMG531. After reading more about it, and the side effects that people experienced -- I think I'd rather get 50 more bone marrow tests than try this drug!
My case is most certainly not the worst. As a matter of fact, my counts are pretty good compared to some of the other people who have ITP. At least I mostly stay above critical and don't have the spontaneous bleeding or need to be hospitalized regularly. But it still impacts my life in a way that I don't like and I guess I never will.
I just have to keep reminding myself, I have family, friends, a husband who loves me, a beautiful little girl, my jewelry and of couse, Etsy. Reading about how other people with ITP are on the PDSA support boards also shows me that I'm pretty lucky. When I read about the kids who are suffering from it and the adults who can't get close to my normal count, who bleed for no reason, well, it makes me realize that I'm pretty lucky after all.
If you read this far, thank you for listening.
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