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

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

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

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