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

Blood counts drop

Hi everyone. I'm sorry that I have not written for awhile. I have been feeling good for awhile-and have been loving it. Recently however, I hurt myself. Nothing major, just a little tougher to get around. But I had to see the doctor and my counts were done. I wasn't expecting them to be great but was saddened that they were as low as they are today. My neutrophil count was 0.2 and was only 6% of my total blood count. I know we all hate it when our own body can make us sick. Anyway, I'm just venting. I hope you are doing well. Kat

Reaching out...November 2013

Hi Michelle. I am so sorry for your frustrations. I have had similar issues and struggles. Some days are good and other are not. And, you do muster up all the energy you can just to get through the day. Please feel free to write again and let me know your email address if you want to exchange emails. I would be happy to do so. I will not publish your message or email. I will be thinking about you. Take care. 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

Living with chronic illness

Hi everyone. Hope you are doing well. Wanted to write about living with a chronic illness. Some days are good. Some days are bad. And, well, other days suck. Others may not know what to say or do when you are living with a chronic illness. After all, they don't necessarily see any thing. I know that's frustrating. I've been there too. You can live with symptoms for some time-just becomes part of daily life. Family may not understand. Friends do not understand. And, your doctor may not even know what to do. You may even be so frustrate you lose hope. Please do not feel hopeless. Keep trying to live as healthy as you can. Reach out to those who understand. Know that what you feel physically and emotionally are real. Take care of yourself. Kat

Reaching out..... Please respond

Hi there. Thanks to the individual that sent a message recently. I am so sorry about your experience with cyclic neutropenia. Please feel free to write again, and include your phone or email- whatever would be the best way for me to get in touch with you. I would be more than happy to talk to you. I went years without knowing anyone with neutropenia and it's almost validating to do so! So please let me know. I do not post the comments, so no one will see it but me. Honestly, I remember talking to someone who had neutropenia and I almost felt a sigh of relief-like I'm not crazy; this is real! So please reach out. I would love to talk with you. 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!

Bone Pain Update

Hi everyone. Hope you are well. Bone pain has been significant lately, ugh. It's like I'm not taking pain medications. I'm trying to exercise regularly to help alleviate some of the pain. Stretching helps a little bit. Making sure I get enough sleep. This time of year is probably not helping. But trying to stay upbeat. Praying for all of you going through hard things. You are so strong. Kat

Try acupuncture...it may help

Hi everyone. Hello to the kind individual who just wrote. I appreciate your nice comments about my blog and about my dealings ith neutropenia. I would suggest you try acupuncture to see if it helps with your neutropenia. I tried acupuncture a year ago and it did help alleviate some of the pain. Unfortunately, I could no longer afford to get regular treatments. And my insurance will not cover it any longer. It did take some time to feel the difference the acupuncture makes-so I hope you are able to feel the difference in your pain. Recently, I have tried massage, since it's not as expensive and I only have it done once a month. It does help with the pain and feels good overall. So, you could try that too if you are able? I'm glad your found my blog. Thanks for reading. Take care of yourself. Kat

Dear Neutropenia

Dear Neutropenia, I am stronger than you. While you may 'get me' in the end-I get 'to win' the battles while I am here. Me. Not you. I AM strong. I plan to keep going. I wish I could pretend you are not there, but you are always just under the radar, ready to show yourself at any moment. I hate that. I wish I could feel well. While I don't remember the last time I felt 100% great, I do miss that. I hate feeling like I'm about to get sick all the time. But, I AM strong-and bigger than you will ever be! Kat

Message response to Bone Pain

Aisha and others, thank you for reading. Thanks for writing , Aisha. Thank you for your kind words. My bone pain is tolerable. Sure, I have bad days but, so do others. And honestly, I'm grateful for what I do have in life-a loving family, great friends, etc. I do take medications to make it tolerable. The pain is usually in my arms and legs but sometimes in my jaw, hands, hips, and rib cage. Usually it's just a deep ache but I do have shooting pains occasionally that increases the pain. On a normal day, the pain can be anywhere from a 3 to 6 with the shooting pains bringing it up to a 7 or 8 (on a 1-10 scale). But the shooting pain only lasts seconds luckily. Aisha asked for some help in regards to neutropenia, so here's what I can tell you: Netropenia is different for everyone. Most get bone pain from the injections but I don't take them. Daily, I have sore throats and fevers, with my Lu gs hurting occasionally. Things I have foud that help: moderate exercise, stretching, getting enough sleep, yoga, acupuncture, massage, and eating well. I do get nauseous sometimes so it's probably the hardest to eat healthy because on those days, I just want bland for like crackers, bread-carbs. I wash my hands a lot and stay away from those who are sick. My neutrophil count stays between 200 and 600 most times. It has been lower and up to 800 at times but stays in that range for the past 6 years. The doctors have not foud anything else wrong besides the Autoimmune Idiopathic (no known cause) Neutropenia. I have often thought there is something else that is making my neutrophil count low but, nothing has been discovered. I have had with the condition for 20+ years but really struggled with it the past 6 years with lot counts and daily symptoms. Aisha, if you want to talk more, please message me again with your email and I would be happy to answer any questions you have if I can. Take care everyone. I wish you all well. Kat

Bone pain, July 2013 update

Hi everyone. Thanks again for reading my blog. I hope it helps those that need it. And, Happy 4th July to those in the U.S. and to all those throughout the world. Just an update for those avid readers: I have been feeling nauseous off and on (sometimes occurs when ANC counts fluctuate), exhausted later in the day, and moderate bone pain, even on pain meds. The last few nights the pain was enough to make me rest/get in bed earlier than normal. I have still been exercising and stretching. And, taking vitamins. Just is what it is. Funny how we can get accustomed to higher pain tolerances as time goes on. What is a 5 now (on a 1-10 scale), used to be a 7-8. I assume that will keep happening-the bone pain getting worse-as my body fights harder and harder to get healthy. I get mad sometimes but really-I am so blessed and have so much in my life, it's hard to think about complaining too much. Sure, I want more things, I still have dreams to make differences-but I am honestly happy and content with everything I have now. Family and friends and things I love about life. I hope you find contentment and happiness with the things and people in your life. Take care. Thanks for reading. Kat

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

Neutropenia: real symptoms

To the individual who wrote this evening-E-thank you!!! I am so glad my blog has helped you feel less alone and that your ailments are 'real'-sore throats, fever, mouth sores, bone pain, bruising, bleeding gums, etc. Your message made me smile-not because of your symptoms and what you go through-but because I have felt that exact same way! Alone, hypochondriac, symptoms that make no sense, etc. please know I'm glad my blog helped you! I'll write more for everyone later. Take care all. Kat

Neupogen & Magic Mouthwash

Hi there. A new reader sent me a question/comment and I want to make sure I answer her. Thanks for reading. I do not take Neupogen on a regular basis. It does not work as it does for most users. (Yes, I wish it did so I could feel 'normal' and not so tired and in pain). But, I do use Magic Mouthwash. It's a great thing when you have canker sores and inflammation. The local pharmacy started making it for me about a year ago. Thanks for your concerns. I appreciate you reading and for contacting me. Thanks for reading anyone. Enjoy the rest of your weekend. 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

Mouth Sores

Hi everyone. Thank you for reading my blog. Hope it's helping you or your loved ones. Right now, I have mouth sores. One is in my throat and is about the size if a nickel-although feels like it's half my throat. Very sore, painful, especially when swallowing. Hot water and tea help. Not much else. Thankfully, there us not much more going on with me- just the regular crap, as I like to call it (sore throat, low grade fever, fatigue, and bone pain). Exercise-and just moving around-helps. So, I have been trying to keep up with swimming, walking, running, weights, and the elliptical-not all at once! (Laugh). I alternate and try to keep it to 5 times per week. If I do more, it's too much for my body. Although I do light stuff on my 'days off' like a walk around the neighborhood. Stay healthy everyone. And, take care. Kat