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I’m a mum about to turn 50 with a soon to be teenage son, a husband and an elderly mum.
I was first diagnosed in May 2011. At the time, I was feeling fatigued and stressed. I needed to rest a lot. I had experienced unexplained bruises, gum bleeding and I sneezed blood; as well as an excessively heavy menstrual cycle. It was near Easter and I just thought I had run myself ragged but didn’t have a clue what was happening.
When my doctor saw the bruises, he took a blood test. On Monday he called and said “Get to the ER. Your platelets are 3,000. And don’t bump your head.” I had a CT scan because of my headaches, but all was good, thankfully. That was when the hematologist and doctors told me I had ITP.
“What the heck was this? How did I end up with this crap?” Wrapping my head around it all was quite the feat. I was able to go into remission (not sure what to call it) by just taking prednisone. It took me a good month to get back up and running and it felt like a good month to get the prednisone out of my system.
My fear was that it could go south and I’d have no idea if I didn’t stay vigilant with my symptoms. It could have been bad had I bumped my head, or a cut myself. Fear of catching a cold or flu and setting off my ITP. The bruises, sometimes I just get so self-conscious of them, I try to hide them from others. Sometimes I just don’t even want to look at them. I wouldn’t wish ITP on anyone. It sucks.
I made it two years.
Then I had another episode when I was taking care of a family member who had fallen ill. After helping for a week I ended up in the ER July 2013 with 800 platelet count (a hospital record). I had a better grip of what to look for and what to be aware of. I dealt with everything much better than the first time around. I stayed in the hospital for a week. I was not going too far up with the prednisone and the last few days in the hospital I had IVIG treatments which boosted me back to 90,000 and then higher.
My third bout of ITP happened in April 2017, landing me in ER with a platelet count of 3,000. My job, my family, life and not taking care of myself, which leads to fatigue and stress. I fell last on my list. My usual signs are bleeding gums. I’m pretty aware and know what to look for. I also have a great group of doctors as well.
This time April 23rd 2017 was a 4 ½ days at 31,000 on a Thursday when I was released. Prednisone did help a bit, one platelet transfusion, two days of IVIG transfusions, but I was climbing slow in the hospital. When I was out I was dropped to 60 mg prednisone and by the time Monday rolled around I dropped from the 31,000 to 9,000. I was glad my hematologist knew I’d rest better at home and trusted I knew what to do.
My husband would take me in for labs and treatments. She bumped me back up to 80 mg of Pred, took a bone marrow biopsy which came out fine and started me on Rituxan a few days later. I did react a bit but they were there to handle it. I’m currently having 3 more Rituxan transfusions and being tapered from the prednisone (and meds to deal with side effect like pantoprazole to protect my stomach) and am currently at 130,000.
To say I have a love/hate relationship with prednisone is an understatement. Prednisone messes with me each time. I get anxiety/panic attacks, joint pain, shakes, insomnia, first time blood pressure, this time blood sugar, GI issues, moon face, water retention, mood swings and all the fun being on it and being tapered from it. The third time on Prednisone I was much better at controlling my eating. The first two times, wow, could I pile the food away!
I love Meg’s list of Top 10 things not to say to a person with ITP. Humor has been great. Sometimes I get frustrated explaining ITP. I think that’s why I also just didn’t say much to people. I get the “you look fine.” I get tired updating people and reliving each up and down with the numbers.There is no set rule for it how long it takes to get over. With me, and it seems with others, each time it’s been a little different.
It’s interesting how people interact with you and you learn a lot about others and yourself. Sometimes you are consoling others while you are sick instead of them consoling you.
I have come to realize I’m not superwoman, though I try my best to my own detriment. I overdid it because I didn’t want people to treat me weird or think I’m defective.
Maybe I thought I was defective? This all played quite the mind game with me to the point I went to therapy after the first bout of ITP. I still see my therapist. It was the nicest thing I could have done for myself. I did see a holistic doctor along with my other doctors and realized gluten and dairy are not my friend. I eat low sugar, complex carb, organic veggies and organic whatever I can; good fats like coconut oil, avocado and olive oil. I prefer grass fed meat or wild caught seafood. No alcohol. I love my coffee, but I limit it. I think low inflammation is the key with immune disorders. I need my sleep, need to take time for myself whether it’s a walk or just a day to rest depending on how I’m feeling.
I have traveled to Europe, working with the hematologist. My therapist came up with ways to cope if something happened and how and where to go. Having a game plan is key for me, it gives me a little control with an unknown.
I’m a pretty positive person and have kept a positive attitude. God and prayer have been important for me and I have a great family to be strong for.
Great piece of advice I got from a friend, don’t panic. I can only go forward. The world does not stop. I know who is in my corner and that I have limitations and to accept as best I can that this is only a part of who I am. It’s ok to take care of me, because who else will and who else will be there for my family. I’m not being selfish. Those who don’t understand it, well, I just develop the too bad too sad for them attitude.
This is not a sprint but an endurance race.
Update, on the 6th June, Mira had a doctors appointment doctors appt for me and I may not have to have the rest of her 3 rituxan transfusions. Last week she was at 153,000 just tapering on prednisone. If she stays around the same or higher today, she may not take the transfusions and just keep tapering me off the prednisone. Fingers crossed Mira!