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

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!

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

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

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

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

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

July 22, 2012

Hi there, Thank you to every one who's reading the blog. Much appreciated. This week, I have struggled with fever, skin cysts, sore throat, and bone pain. My pain meds continue to help make the bone pain tolerable. The pain has been moderate in my legs. One night this past week,I felt miserable. Very tired, in pain, and thought I was getting the flu or virus. But it only lasted one day, so that's good. I have not been able to exercise due to infections. But am hoping to start tomorrow or the next day. Hope you are doing well. Take care of yourselves. 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