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

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

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

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

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

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

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

Family members better

Hi there. Hope you all are having a great start to 2013! Just wanted to send you a quick update-my family members are better. It was influenza and they are fully recovered. It took a full week. They were miserable during the illness, poor things. I am still hoping to get through it but, I'm not so sure. I'm trying to will myself healthy. But, my bone pain is so bad today-it hurts to move. Yes, it's just the neutropenia crap. It's not influenza. Although, part of me wishes it would just come so I could get it over with. I have no fever, cough, stuffy head, etc. it's just the bone pain from the neutropenia. I am sure my body is working really hard. And, I appreciate that. But, it still sucks. Not to mention, the pain just makes my body exhausted. Just keep hoping that it can fight it off and we can get back to normal around our home. Lastly, I hope that that you all are doing great and will have a very healthy new year! Kat

Happy New Year 2013

Hi everyone. Hope you had a great New Year's Eve. My family stayed in-have some sick ones here. Poor things. High fevers. Up to 103. They do not have neutropenia. They are just miserable. They are hoping they don't share with me, who does have Neutropenia. High fevers are not good for us! I believe they have a nasty virus, not a bacterial infection. I do hope they are better soon. Alternating the ibuprofen and Tylenol to keep the fevers down. On a positive note, I had blood counts done last week and my neutrophil count was 0.9. Higher than it has been in awhile! Yeah! My WBC was 2.5. Perhaps keeping me healthy! Don't get me wrong, I want my family members to get better. I have been eating really well too! Limiting carbs and making sure I get plenty of protein. And tons of fruits and veggies! I had a great protein shake today-vanilla protein, amlond milk, clementines, and coconut. I felt like I should be on the beach! Usually I have more fruit in them, but today, I was just hoping for yummy! And it delivered! I wish you all a very happy and healthy 2013! Take care! Kat

Glad you find my blog helpful.....

Hi there. Thanks to the individual who sent me a message yesterday. I'm sorry you have been dealing with Neutropenia. I'm glad you found the blog helpful to you. That is one of the reasons I started it. Please feel free to message me anytime if you wish to vent or if you have questions. Thanks to everyone who is reading. I appreciate the time you spend reading. Take care everyone. Kat

I really hate Neutropenia today.......

Hi folks. Okay, I probably hate Neutropenia most days, but really hate it when it takes over my life and keeps me in bed for days! Ugh! My throat is sore and raw, lungs hurt-front and back-but no cough, and fatigue so bad it's hard to move. Those with neutropenia know what that fatigue feels like. It takes over and sleep does not relieve this kind of fatigue. I know my body is telling me it's time to rest, but I get it. Can we be done now? I have a low grade fever but nothing too alarming. The meds are keeping that down. There is no underlying infection that I would need to see my doctor for, unless I crash. I do remember what that feels like and will go in if that occurs. But, I'm not there. Anyway, just venting more than anything. I just want to get out of bed and live a normal life! Ugh. Thanks for listening. Hope you are all well and enjoying the long weekend. Take care. Kat

November 2012 update

Hi everyone. Thanks for reading this blog. Much appreciated. I'm doing ok. To be honest, I've been frustrated and depressed about the pain increasing. The pain is in my bones, increasing throughout the day. I've been trying to work with the pain meds to see if I can figure out to make them work better by time of day, taking together or not, etc. I do need to remember to stretch because that does tend to help-life just gets busy, as you all know. I've been good about being 'good to myself'so I don't over-do it. Life continues and I still want to do things. But sometimes it's hard dealing with the daily pain that comes with Neutropenia. So, I continue to move forward as you do too. Thanks for reading. And, I wish the best for you. Kat

Bone Pain

Hi everyone. Hope you are all doing well. Just wanted to send an update. This fall, it has been hard to keep up on managing bone pain. I've been taking pain meds but still have been having bone pain. The past two days, I've had the excruciating shooting bone in my legs-and it was very painful. Not sure what its from. Just trying to get through the days dealing with that. No significant infection that I know of-just 'normal' sore throat. Hopefully, it will stop soon. Still keeping up with vitamins, exercise(moderate-so that's not causing more pain), and sleep. Hope you have a great week! Thanks for reading! Kat

October update

Hi everyone. Thank you so much for reading my blog. There was a huge spike in the last 24 hours, but cannot figure out why? But, hope it's helping those that are reading. I have been ok. I was on antibiotics for an infection. Throat was worse than normal but, not strep. Bone pain has been worse this week. Doc tried alternating pain meds with ibuprofen but, didn't work. Stomach cannot handle the ibuprofen. Discouraging. But I try to keep living positively. Still here, and that's awesome. I wanted to make a call out to Susan! I hope the acupuncture is working for you. I'm sorry I didn't see your message before. And, to anonymous-good luck dealing with the bone pain. It sucks. And most people do not understand what it's like. Please feel free to shoot me a message any time. I get it. Have a great night everyone. Take care of yourselves. Kat

September 2012 Update II

Hi there. Hope everyone is dong well. I did want you to know that my higher fevers went back to normal for me. So, they are staying between 99-99.8 each day. I continue to make sure I am eating enough protein each day. Most days, I am having a fruit/protein drink for breakfast. I think it's helping. My bone pain is the same but manageable through pain meds. The cysts that I've had are gone and I don't know of other cysts present-that's good! Every couple days, my gums bleed. I know-gross. Gum! It helps my mouth not feel so dry. (yes, I floss every day-so that's not the reason). Anyway, just wanted to let you know that the fevers went back down to the 99s. Have a wonderful week! Thanks so much for reading. I wish you well. Kat

September 2012 update

Hi everyone. Thank you so much for reading this blog. I do hope it is helping others. Please feel free to contact me if you have any questions. I started eating really well-making sure I'm getting enough protein and lots of fruits and vegetables. And, wow! I can tell it has made a difference. That being said, unfortunately, I have gotten a fever today, higher than normal for me. I'll see what happens overnight. I do not have any other symptoms other than the typical-sore throat, bone pain, fatigue. Will see doctor if it continues to rise. ( No worries!) have a wonderful day or night. Kat