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

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

Neupogen & Magic Mouthwash

Hi there. A new reader sent me a question/comment and I want to make sure I answer her. Thanks for reading. I do not take Neupogen on a regular basis. It does not work as it does for most users. (Yes, I wish it did so I could feel 'normal' and not so tired and in pain). But, I do use Magic Mouthwash. It's a great thing when you have canker sores and inflammation. The local pharmacy started making it for me about a year ago. Thanks for your concerns. I appreciate you reading and for contacting me. Thanks for reading anyone. Enjoy the rest of your weekend. 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

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

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

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

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

Sore throats bite

Hi everyone, Thanks for reading my posts. I appreciate it. Just wanted to write and say I'm sorry to those who struggle each day with pain. It doesn't have to be neutropenia; it can be any pain that you live with each day. I have chronic tonsillitis due to my low neutrophil counts. My throat is always sore and is red in the back. Most of the time I am used to it, but this week bites. I have had 5 canker sore-or should I say craters-besides the sore throat. Ugh. I hate those. Bleeding gums too. I hate brushing my teeth when that happens, it's gross. But you have to do it-clean mouth certainly helps the sores heal faster. I was lucky to get some 'Magic Mouthwash' to use, which helped a lot. My bone pain has been steady. It's Friday, so I hope you all have some nice weekend plans-spend time with friends or family, take in a good movie, or sit down with a good book. Take care of yourselves. My thoughts are with you. Kat

Chronic illness bites

Today I was frustrated about living with Neutropenia. I was just sick of it all: bone pain moderate even with pain meds; fever; raw sore throat; fatigue; and just over-all feeling of 'feeling like crap'. Yet, I feel a need to go about my day as if I'm just fine. When in reality, I want to scream! I just don't want the hurt any more. I don't want the pain. I don't want to think about the fact that I could really sick at any moment. People ask, "How are you?" I answer I'm fine because who really wants to hear about it all the time. I realize I write on this blog in a positive way, but thought you would want to see the other side- that I don't feel positive all the time-and it's normal to feel this way sometimes. I hope those with chronic illness don't feel this way every day-that they can see the good things more often than not. But when you do feel down, know that you are not alone and it's okay to feel this way sometimes-it's normal! Have a great week everyone. 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

Still feeling better....

Hi everyone,

Thanks for reading my blog posts. Just wanted to update you: I continue to feel better. I have not felt the overall weakness and fatigue; no sore throat; no mouth sores; no lung pain; no bone pain in arms/legs. I have had pain in my hands like before-probably like mild arthritis. And, my temp on Monday was 99.0. That's it! YAHOO!! What is going on? Before, I had fevers everyday between 99.4 and 100.

I am starting to get excited-but still am worried it will not last. My friend's funeral is Friday so I guess we will see in a couple weeks if I was just numb and all the symptoms come back.

Today, I played football with my son after dinner! And, I have been able to run and swim-and I haven't felt sluggish afterwards.

My vitamins came from a health place-better quality vitamins. I never thought there would be such a difference. Sad they can sell the cheaper ones. Try chaning to better vitamins to see if it helps you alleviate some symptoms.

Take care. Thanks again for reading.
Kat

New Test Results

Here are all the results from my test:
Hi everyone,

I saw the specialist late this week regarding the results of the “NutraEval” tests. This test checked all the vitamins, antioxidants, and minerals in my body and blood. They wanted to check to see if there were any deficiencies that could be causing problems within my immune system or body. This test did not check the blood work that is normally checked when I have blood tests.

The main issue they found! I am severely deficient in the mineral “molybdenum”. I have never actually heard of it! This deficiency can cause mouth sores and an increase in infections. MMmmmmm….. get those!

I have not been using the best quality vitamins. So, switching to better quality vitamins was priority.

Some other issues that are not a big deal: I am low on the B-vitamins & Magnesuim. He was not surprised since I am a vegetarian and most of the B vitamins are found in meat; and, the fact that the vitamins are not the best-I am not absorbing the most I can. He thinks with the better vitamins that this will take care of itself.

I am also low on Ammonia-from protein deficiency. Lysine & Anserine is also low and is usually found in meat proteins. So, I need to increase my protein and decrease my carbs (no surprise there). It’s fine that I get my protein from powder and beans/legumes-and not meat. I can stay a vegetarian and it will still work for my health.

Omega 3 Fatty Acids: The test could tell I was taking flax seed but my body was not completing the transformation of omega three/six processes. I am not getting enough DHA in my fish oil pills. It actually showed ‘abnormal omega-oxidation’. Individuals with this issue often present with lethargy and fatigue. MMMmmmm… again!

So, I purchased good multi-vitamins and good fish oil capsules with DHA in them. I am to take 2 multi-vitamins & 2 Fish Oil pills for the first month and then one capsule of each/day after that.

The doctor is hopeful that taking the above will help alleviate my symptoms of fatigue and weakness. He said it won’t take care of the neutropenia that I have had forever-but it may raise my counts a little (try not to get my hopes up-but I still cannot believe that they found anything-and look at all this!

The Great news: he said he has only done about 200 of these tests for patients-and he could ACTUALLY TELL that I EAT REALLY WELL! Top people! Yahoo!! It does work! All the other vitamins and minerals were excellent!! A, C, E, Antioxidants, etc. 

So, I will take the ‘good’ vitamins/fish oil for now. I will increase my protein/decrease my carbs. And, we will see how it goes! He said the next thing to do is to add the Lysine.

My next appt is at the end of October (with my regular doctor) and they will see how I am doing then and where my counts are.

But, that is the information they found from the test.

I felt wonderful the last two days-but the bone pain/fatigue is setting in again today, so I assume it was the adrenaline from the test results. Now, don't get me wrong, I know that none of this will cure the neutropenia. I wasn't looking for that-but that would be nice, huh! :) I guess it just gave me some hope that there could be a reason my symptoms took a bad turn these last couple years. I guess we will see. As usual, I will keep you posted.

Have a great night everyone!
Kat

August 2, 2011

Hi there,

I had an acupuncture appointment today. Felt great.
Relaxing and felt energized afterwards. Perhaps it is helping!

I have one week until I hear back about the immunoglobulin tests. I am sure they won't find anything new-but at least we can rule out everything! There are some nutritional things they can do-but we'll see.

Bone pain my my hands has been significant lately-perhaps that is becoming arthritis or something? Bone pain in my arms and legs too. Most of the time, it starts out mild to moderate in the morning and intensifies as the day goes on to moderate to severe. I still get shooting pains through the legs-that is really intense but hasn't been lasting long. 30 seconds at the most.

Hope you are all doing well. Take care of yourselves.
Kat

Deep Pain

Hello. Today, I tried to do whatever I could to alleviate the pain I am having in my bones. It's such a deep pain, deep within the legs, hands, arms and jaw. At one point, my arm hurt so much that I thought it may break if it just twisted.

I started the day out by going to the pool to swim laps. I did hurt already but thought that the exercise may help. Well, I wasn't able to complete all the laps and I did stop. At first, I was mad. I hate that my body cannot handle swimming as I once did. Not too long ago (1-2 years ago), I could easily swim 1 mile. I had to decrease that to 2/3 mile, which I can complete most days. I do have to push myself to do so, but finish it most of the time. But, not today. So, I was mad at first-and then cried on my way home.


Unfortunately, the pain increased throughout the day. Luckily, it was my day to work from home. So, at least I could work in my shorts and t-shirt to stay comfortable. I tried heat and stretching but they didn't help much today.

I was sad this afternoon. I thought I may need to stay home again tomorrow if the pain and not feeling well continued. I am hoping it's just one of the bad days and tomorow-I will be 'normal' again. I guess we'll see.

I do hope you are all doing well. Take care.
Kat

So Tired

Good evening,

The last three days, I have been so tired. And again, it's not the tired that can be helped by sleep or rest. Your body is just tired, achy, and there isn't a position that feels good.

The bones that hurt today were my legs, arms, jaw, arms and hands. My pain med helped a little bit. Didn't eliminate the paint today.

Starting to get a mouth sore-and it's on my tongue. Ugh! I hate when they are on your tongue. Those are the worst.

Still trying to work out most days. Sounds crazy some days-but it does help wtih the whole day-not as tired and usually helps the energy. There are a few time where my body is so tired that workint out does no good-and wipes me out the rest of the day.

I do wonder my WBC and Neutrophil counts are-has been a couple months. Still waiting for the big test that was done a couple weeks ago. But, it will be a couple more weeks until the results come in. Waiting game. You know what that's like ;)

Thanks for reading/listening. Hope you are all doing well.
Take care,

Kat