Neutropenia....Still Doing Well & You Don't Define Me

Hi everyone, Hope you are all doing well. I have still been feeling good. (Knock on wood-right!) I still have the every day bone pain-but the pain meds are helping with that. If I forget to take one, I remember why I take the pain meds. Ouch! I am continuing my regimen: exercise, eating well (Most days!), vitamins, stretching, herbs in my protein smoothies, and enough sleep. I also don't feel that I get stressed as easily since I have been home from the hospital. I guess thinking you could be near the end puts everything else in perspective :) Last week, I took a class. We discussed our inner critic and why we couldn't write about certain things. Anyway, it eye-opening for me. One, I am not very good to myself and I need to change that! Second, I starting talking to the 'neutropenia' like it was a person. Wow! I finally said-Neutropenia You do not define me. I get to define me. Neutropenia may be part of my body and it certainly has the capacity to bring me down-but it does not define who I am! My family, friends, my interests and passions help define who I am. While I am passionate about helping others with neutropenia and advocating for their health care-I am not passionate about the condition itself. As you know, the condition sucks. One day you feel fine and before you know it-you feel like crap for no reason other than your body cannot handle all the germs and bacteria it comes into contact with every day-not to mention your own bacteria/germs in your body. Sometimes, Neutropenia sucks. But, I do hope you find an inner peace so that you can enjoy life-a quality life-and not worry about it all the time. That is my wish for all of you. Have a wonderful day! Kat

Great Counts...then Pneumonia

Hi everyone, Well, it's been an interesting month to say the least! After my last post, I had my blood counts checked and they were the highest they have been in 4 years. I was so excited; I was on cloud 9! I felt great! My WBC was 2.8 and my neutrophil count was 0.8. (high for me). My family and I went on vacation for a week in March. We all had an absolutely wonderful time! And we returned home. Three days after returning home, I woke up ill. Granted, I had a scratchy throat the night before but thought nothing of it-and went to bed. Well, I woke up feeling miserable. I vomited all day, had a fever, and my lungs hurt-and by hurt I mean it felt like there were 10 belts wrapped around them all pulling tighter as the day went on. Ugh! By the next morning, I was very weak. And, my cough sounded like a 12 on a scale of 1 to 10. No kidding. My husband and I thought that this was not good-and brought me to the ER (it was Sunday). They called me back to a room after sitting in a waiting room chair for about 7 seconds. My temp had gone up to 101. They checked my blood counts right away and then took me down for an x-ray. My blood counts were not good-1.0 WBC and 0.3 Neutrophil count. Docs said I was being admitted. I was place in isolation under neutropenic precautions. I had several bags of IV antibiotic and pills as well-they were covering everything I guess. The next day, I was scared. My counts had not really moved and I hurt. I had a heart monitor on as well-just to make sure. Come one! That did nothing for my relaxation. :) But it was the pneumonia that scared me. Perhaps this was it. I grew very weak. My bones hurt a lot. Fever kept returning. I was not doing well. I was resting as required. Tuesday morning, they came with the neupogen shot. I have a serious LOVE/HATE relationship with neupogen. I LOVE the fact that it saves lives-honestly, what's better than that. But, I HATE the pain it brings. To those that have had migraines-it's worse than that (and I mean no disrespect-I have had those). And, it's usually not just your head-it affects your whole body. At least they took pity on me when they found me in tears, holding my head, in the dark and gave me pain meds to help. That lasted about 14 hours-and then the nausea set in and I didn't want any more pain meds. The injection did the trick and my WBC shot up to a whopping 4.5. Now those with neutropenia I am sure at least smirked at that last sentence-cause honestly folks-normal WBC for most people is higher than that. On Wednesday, they returned with another injection, which I refused. I asked them to consult with my physician because if you have followed my past posts-you know that the Neupogen injections only work to boost my counts for 24 hours and then they drop again (even if I continue to take them). So, there is no need for a second shot. Lucky for me, they agreed and I did not have a second shot. It's been a little over a week since I have been back home-and I am feeling better. It did take some time. I still have a very slight cough and my lungs still hurt from time to time-but that could be the Neutropenia again. My high fevers are now gone and they are now staying at or below 99.6. (Still enough to make you feel somewhat icky :) ). I haven't started to exercise again-but was planning to do so this coming Monday. Still giving my body some time to rest and heal. I did start my protein drinks again today. My stomach has been somewhat nauseous-which I am sure was from all the antibiotics stripping the 'good bacteria' in my stomach/body. I started yogurt days ago and that has started to help. I am hoping it goes back to feeling great-like just this past January-March. I'll keep you posted on my recovery, which is going well so far :) Thanks for reading! Have a wonderful weekend. Kat