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

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

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

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

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

Glad you found me

Hi K. I just read your message that you sent to me a week ago. I'm glad that you found me and find the blog helpful. I'm sorry you have neutropenia but, glad you have had no major issues. Thank you everyone for reading my blog. I hope you all find it helpful and interesting! I have been doing well. Still struggle with the same daily issues-fever, bone pain, sore throat, and fatigue-but really try to have a positive outlook. The last couple days, I have been really tired. So, going to try to take it easy. I have been exercising moderately and trying to adjust my diet even further to help with my health. Limiting carbs and eating more protein. At least trying! I wish you all well! Have a great weekend. 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

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

Foods & Neutropenia

Hi everyone. Thanks again for reading this blog. Someone wrote to me and asked about any foods that you need to stay away from with neutropenia, or low neutrophil counts. Please note-I'm not a doctor, just an individual who struggles with the effects of neutropenia. My doctor and I have felt that I can eat almost anything-the only thing I stay away from are sprouts. I make sure I wash fruit and vegetables well. In addition, when my counts are lower, I tend to stay away from salad bars at restaurants. However, when my counts are really low, I tend to eat pretty bland foods anyway since my stomach is not always 100%. I do know that others have restrictions that they follow in regards to food selections. Please follow what your physician wants for you to stay healthy. Sorry if this doesn't help much. Just want what is best for everyone. Take care. Kat

June 5, 2012 Pain, Fever and Bruises

Hi everyone, Hope you are well. I am doing fine. My bone pain in my body has increased in the last couple days. I can handle it but, it still sucks sometimes. Sometimes I wonder, Why? What's the point? Not sure yet. If these posts help someone out there-you-then, that's good. That is good enough for me. So, I get over that quickly. My pain meds-which includes acetaminophen-has not been taking care of my fevers. So, my daily fever-with the meds-is between 99 and 100. Never enough to go to the doctor, but enough to make you feel like crap. I guess they would be higher without the meds. I have been noticing more bruises on my body the last couple days. Ugh. Bruises on legs and stomach for no apparent reason. The bruises on my legs have always happened-but there are a few more than normal and the stomach is new. And those hurt. (I do not take Neupogen injections; so, they are not from that in case you are new to reading the blog :) ). As far as the rest of things go, I have been feeling fine to good. Like many of you, I will sometimes get mad about the pain that I experience or just the general feeling of fatigue and feeling run down; but then realize that there are so many others out there that have to deal with worse things.....so I get over it. Honestly, I have two legs, two arms, the ability to see, hear, feel, etc. I thank God for those things every day. Thanks for listening (reading). Hope you all have a good week! 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

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

Neutropenia Specialist?

Hi there,

Today, I saw a doctor that looks at the over-all health of an individual and makes sure that everything that can be done has been-and every test that could be done, has been done as well. The doctor was nice and seemed to understand Neutropenia. Expert? No. Actually, he didn't even consider himself an expert either. Probably helped me like him. I think the experts are those that deal with Neutropenia every day (not the Hematologists that have 'heard' about it :).... ).

We discussed a person's overall health: food/nutrition, vitamins, exercise, sleep, mood, alternatives-like acupuncture, and spiritual needs. He said there is good news and bad news. The good news is-you are doing every thing you can to stay healthy and to limit infection. The bad news-is you are doing every thing you can do. sigh. (As I have stated before-I try really hard to eat well-I am a vegetarian, just feel better when I eat that way; exercise; sleep; meditate; yoga; hot baths; acupuncture.) We did discuss my recent sadness about the condition affecting my daily living more and more lately.

However, he did bring up a blood test that I have not had done before. It tests the Immunoglobulins within the blood to see if they have malfunctioned in some way that has affected the Neutrophils. He thought there may be a 10% chance they could find something. Now, I realize that means there is a 90% chance they will not find anything and that is most likely what will occur. But hey-it's something to check.

He said if that does come back normal, we can look into nutritional issues-perhaps an allergy to soy, corn, or something else? I have taken myself off dairy before and gluten as well-but didn't make any difference. I have also had the gluten allergy testing-and that was negative.

Anyway, I wanted to keep you posted about the 'specialist' I saw today.

The bone pain/fever was up yesterday. I was scheduled to work a long day so, it made it tough to get through the day. Today was a little better-a little more fatigued this evening, but plan to go rest soon.

Thanks for reading/listening. Have a good night.
Kat

Counts Dropping

Last week, I have my blood counts drawn. My white blood count and neutrophil counts have dropped. The symptoms that I have been experiencing are due to the low levels. My body has always done fairly well with Neutropenia until recently. Now, it seems I will have to put up with the symptoms that come and go-sore throats, muscle pains, etc. I have had low grade fevers each day for several months.

My doctor says I need to relax and take it easy when I do not feel well. I understand-but this is difficult for me. Not only do I have 2 kids-6 and 8-but I have such drive to get ahead at work that being satisfied with my current work is hard for me to do. I will try to learn! Really! I am thankful for what I have-I know things could be worse. And, I know I need to keep myself healthy. We'll see how it goes. However, in reality-I think I'm in denial.

My counts have dropped over the last couple years-and I am worried they will continue to fall. I sometimes wonder when it hit-when will I get sick-and will I ever feel healthy again?