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

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

Bone pain increasing...

Hi everyone. Been struggling with my daily symptoms lately so, I apologize that I have not written for a couple weeks. Still struggling with daily fevers, sore throats, pain.... And, the pain is worse that is has been-getting worse. Somehow, I feel I can work past it. I do miss going through the day feeling 'normal' and think our brains are fascinating in the way it has us work through hard times and how it becomes your daily reality. Pain meds have helped, but I have had to take more-which I hate. To the individual who wrote me-I hope the acupuncture works well for you. Take care. Please write if you need to chat. Have a good week everyone. Kat

July 7, 2012

Hi there, Hope you are doing well. And, if you live ib the US, I hope you enjoyed you 4th of July! Most of my symptoms from the last post ae gone. I still have bone pain and the overall fatique/weakness that is not alleviated by sleep. But the mouth sores, stomach issues, and UTI are gone! I haven't been to the acupuncturist for some time. I need to call and make an appointment. That may help. Hope you all enjoy your 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

Trying Acupuncture

My doctor gave me a referral for acupuncture. And, yesterday was my first session. It felt great. I only felt one of the needles going in the skin and it didn't hurt at all. They inserted about 5 very tiny needles around each ankle and each wrist. Then, I laid in the dark with soothing music for 15 minutes. Very relaxing. Anyway, there were times when I felt energy and warmth moving around my body-that must be something! Even if it's just hope :)

I did have color in my face afterward the acupuncture-I am usually pale. I did feel better for about an hour after the appointment and then the bone pain starting to return. I have 5 more sessions over the next couple months. So, we'll see how it goes.

Have a great day.