August 2014 update, keeping off gluten

Hi everyone. Hope you are doing well. Sarah, thanks so much for your note; I'm so glad you are doing well. Keep it up. I'm glad this blog can help someone. Feel free to ask my any questions.
An update on my health-I've been doing great. Keeping off gluten has done wonders for the symptoms I had for years. The constant pain, sore throats, and intermittent lung pain are gone. I still get low grade fevers due to the neutropenia but it stays between 99-100.  But I feel great! The diet can be hard but I'm able to make it work and have been getting better at it. Please note: I do not believe that gluten causes neutropenia nor going off gluten fixes it. But the other symptoms that I have been dealing with for 7 years seem to have gone away. I do believe gluten can cause issues in some people. Anyway, just wanted to clarify. Again, hope you are all doing well. Take care. Kat

Feeling absolutely wonderful....knock on wood

Hi everyone. Sorry that it has been so long since I have written. I didn't know what to say anymore. I didn't want to complain about my symptoms because honestly, I believe there are worst things. Many of you suffer from terrible symptoms-I'm so sorry. I do hope the best for you and keep you in my prayers. Last month, I had the stomach flu pretty bad. I couldn't eat and it lasted a long time. During that time, my pain went away. Yes, all of it. Bone pain. Sore throats. I started to think it was connected to food? So, I wanted to try something-I have eliminated gluten and have limited my sugar. I feel wonderful! The pain is gone. No pain meds for weeks! Yes! Please note-I do not believe this is associated with the neutropenia. For years, doctors said the symptoms do not match others with neutropenia and thought it was something else. I didn't believe them. Perhaps it is true? Too soon to tell. I still have low grade fevers-which is from the neutropenia. I hate to even write this knowing the pain could return at any moment. I have had neutropenia for over 20 years. The other pain-bone/muscle, nausea, sore throats, lung pain-started about 2008. It's been a long ride. Ugh. Anyway, it's hard to eat this way-but if keeps making me feel this good-I'll continue forever! Yahoo. I'll keep you posted. As for my neutropenia, my counts are staying in the normal range for me: moderate to severe neutropenia. I have continued to exercise-swimming and walking. I am afraid to run still, thinking the pain will return. But I will keep moving along, praying this all stays this way. Thanks for reading. I will keep you posted. My thoughts and prayers are with all of you who struggle with neutropenia. Kat

Lower counts... November 2013

Hi everyone. Thanks for reading my blog. I hope you find it helpful to you. As for an update on me, I am still having trouble with increased bone pain, sore throats, low-grade fevers, and other intermittent symptoms. I try to take care of myself so that I can keep myself as healthy as possible, which seems to be the best preventive care right now. My white blood counts has fallen below 2000, or 2.0, and my neutrophil count is below 300. I am exercising again, taking vitamins, eating lemons and fruits and veggies, and drinking water. Washing hands. Will be hard to keep the germs from others at bay, but gotta try. Hope you are all doing well. You are in my thoughts. Feel free to write anytime. Kat

Sick of symptoms, but try to stay positive,October 2013

Hello blog readers. Hope you are well. Thank you for reading this blog; you are appreciated. The bad bone pain I was struggling with a couple weeks ago did go away. I still have it every couple days but at least it's not every day right now. Thanks for your concerns. Now, I'm dealing with tonsillitis that is bad and lung pain that makes my ribs feel like they are broken when I take deep breaths sometimes. I know it's the neutropenia working overtime, but really? Can't you take a break? I really try to stay positive. I do feel blessed with many things that I do have in my life. But some times, I just want to feel no physical pain at all. Days like today make me want to scream: is that too much to ask? Ugh. I know many of you feel the same whether you have neutropenia or you struggle with other things. I am aware that every one struggles with something. I don't pretend that I am the worst off. I don't believe that at all. Some times I just want to feel 'good'-no pain, no symptoms, no fever. On the bright side-just so you all know-I am Thankful and appreciative for all I have in my life. Thanks again for listening and reading. Take care. Kat

Hard Days in regards to pain

Hi everyone. Hope you are doing well. I have had a hard couple days in regards to bone pain. Some days my body sucks. Bone pain has been in my toes, fingers, ribs, legs, and arms. It sometimes feels like my bones are going to snap in half. Nice huh. I know I should not get down about it-my body is working hard, I get that. But, I still hate it. Even my collar bone hurt today. Throat is still sore but I would take that pain any day over this recent increase of bone pain. My lungs have hurt too-I will keep an eye on that and be seen if it gets worse. Just think it's part of the whole package going on right now. Hope you are all doing well. Thank you so much for reading my blog! I appreciate each of you!

Neutropenia: Being Tested for other things

Hi everyone. Now, I don't know about all of you, but I'm always afraid the neutropenia will become something else. I'm always waiting for something else to show up on tests that make the doctors go, uh oh. I don't think it will ever go away. I will always wonder and wait... But it recently happened. I had tests one to make sure it was fine. Three days of waiting...stinks. Luckily, this time everything turned out fine. Everything was normal. But the waiting and wondering that comes with neutropenia stinks. Will it become leukemia? Will it go away? Or, will it become something else? Other than what you just read, things are good. I hope you are all well too. Kat

May 2013 update

Hello readers. Hope you are doing well and able to take care of yourselves. I would say I'm doing well. I still have my ups and downs but hey, I still here. My bones continue to hurt everyday, more so than before. And, I still have the sore throats, fevers, intermittent lung pains, and fatigue. Just get so tired. Like coma tired. Sleep does not help. So, people telling me to rest does not help (I don't get mad, I know they mean well). I still have days when I just get mad about it all. I get sick of the pain, the fatigue, and just feeling like crap most of the time. What does get under my skin is when others complain about mild symptoms that they have had come on-sore throat, for example. I know that it isn't always there and it does hurt but, really? $&7)&$($. He he. I honestly try not to think too much about "Why me?" Because honestly, why not me? I would rather have this than have the children suffer with it. If I could take neutropenia away from them,I would in a heart beat. Anyway, now I'm just ranting :) wanted to send a quick update. Thanks for reading. Take care. Kat

Bone Pain & Fatigue

Hi everyone. Hope you are all doing well. My bone pain has been moderate the last couple days, even on pain medications. And,my bones feel fatigued-like they are deteriorating. I know that sounds crazy, but they feel weird, very tired, and hurt. I know they are working hard. Just sick of of this crap. I know those that have neutropenia know what I'm talking about. Some days you just get sick of it all. Ugh! So, while I am so very thankful for all I have in life-my family, home, and things I take for granted all time-I just want to wallow and scream about my neutropenia pain, symptoms, and the deterioration of the health I do have and will lose as time goes on. Ugh! These days suck. I am thankful to all of you who read. I pray for all those with neutropenia and other health conditions envy day. My you find some peace. Kat

Hate not feeling well

Hi everyone. Hope you are well. I have not been feeling well for about 2 weeks. I have had infections and have already had antibiotics. My body is weak, exhausted, and just doesn't feel right inside my arms & legs (hard to explain the feeling-like when your stomach is hungry and empty-that's as close as I can get too telling you what my arms and legs feel like today). I've had a bad headache, bad sore throat, stomach issues, lung pain, low grade fevers, and significant bone pain. I'm sick of not feeling well-and having others feel bad for my condition and always saying sorry. I'm sorry too. I didn't wish this, want this. The exhaustion is the kind you do not get rid of with sleep. I know this is not going away (although I wish that all th time). But I just want to feel well. I hate feeling sick every frickin' day. Sorry-just frustrated that there is not a lot that can be done and jut sick of feeling this way all the time. I hope you all have a great day. Thanks for reading my rantings.... Kat

September 8, 2011 update

Hi there,

Hope you are all doing well. Just an update for this week.

On Tuesday morning, I went to have acupuncture. At that appointment, I was able to move my hands and feet and not feel the needles! Never done that before. I felt no pain at all. Before this appointment, I would feel little pings of pain (minimal) when I moved-so this was pretty cool. According to the acupuncturist, it meant I was stronger and had more chi. (or is that 'qi'?).

When I was leaving the appointment, the specialist who had the last test done on me, was in his office with the door open. So, I decided at the last minute I would stop and say, "Thanks!" (I did plan to send him a card). Anyway, I stopped and knocked and said I was sorry to bother you and not sure if you remember who I am-but I am Kat XXXXX who had severe neutropenia. He said, oh yes, you had the severe bone pain. Well, I told him I wanted to stop by and say thank you because I still continue to have no fevers, no sore throats, and no bone pain. He asked about the pain management/medication. I smiled, and said, "I haven't taken any pain pills for over a week!" (And I was taking 3 a day!). He was very excited and said he would update my chart and made sure my doctor knew. I said my doctor does know and I am having WBC with differential on Friday to see if they have done anything. He asked me to keep him updated.

So, I have my blood counts done tomorrow morning. I continue to feel well. But, to be honest, I still think that I am going to wake up one day soon and I will have the same fatigue, fevers, pain, sore throats, I had just weeks ago. I realize it has only been 3 weeks of feeling well but I so want to believe that I will feel this way forever! It's like a miracle! But, I also hear the doctors in my head telling me-not too long ago, I might add-that it was going to get worse and worse and to brace myself for less work, more pain, more fatigue, more illness, etc.

I am LOVING the way I feel. It is truly a GIFT and I know that. I thank God every day-and then some. But there is still part of me that feels it will pass. I guess we'll see.

I am curious about my numbers and where they will be. Will they still be low, even though I feel better? or, will they have jumped up a little? And, then, what does that mean? will they stay that way? So many questions no matter what the outcome I guess.

I will definitely keep you all posted. Thanks for reading and for your thoughts. I wish you all the best.

Kat