I've held off on writing this post because I haven't felt great and I needed to get some things figured out at work. Now that things are ready to move forward, I'm ready to talk. Thanks to the steroids, my count today was 218,000, which is amazing for me. It also means my body has been working in major overdrive.
Jimmy and I made it into the clinic Wednesday morning. At the appointment, Dr. M looked me over and we decided that other than the nosebleed, there was nothing that would have brought me into clinic or needed treatment. We had a good deal of discussion about what would come next. Chronic diseases flare up occasionally. I haven't had major flare-ups since high school and college (when I was a standard, once-a-month fixture in the Duke Children's Hospital). Dr. M thinks this is a flare-up and I agree with him. Since the school year started, I've just been off. I've had the female symptoms and just haven't felt as good as I usually do. The conversation I've always had with Dr. M is that when my symptoms start affecting my quality of life, that's when we need to start some sort of maintenance treatment. I told him Wednesday that I put it in his hands. I said, "I can't have nosebleeds like this and live my life, work, and do the things that I love. I'm ready to start this medication whenever you say it's time." Dr. M said, "Okay, it's time."
Nplate is the new drug I will be taking. It is a subcutaneous shot that is platelet growth factor--if you remember the red blood cell stuff Lance Armstrong got in trouble for using, this is the same thing, except for platelets. The medicine has only been on the market for 2 years and is a controlled substance. This means that before I take it, I have to have blood work done to help determine the dosage and make sure my count is where it needs to be. Nplate is not used to make a platelet count within the normal range (150,000-350,000ish), but within a safe range, approximately 50,000. I am also now in the Nexus Nplate registry. Part of being on this drug means the drug has to be administered in the office of the prescribing physician, which also means I will be going to Duke once a week.
This was the most stressful part for me. The medicine doesn't scare me because we have been finding out information on it for about a year. But what am I going to do with my "kids"? Thank God for a supportive work family.
I spoke with my principal on Thursday. She was truly wonderful. I found a sub who is able to come in for the Mondays between now and Christmas. My kids will work hard for her and I know she will do a great job. I am blessed beyond belief with my students. They are one of the best behaved groups of kids I've ever taught. My wonderful coworkers have also been just amazing. Despite being on steroids and not feeling like myself, I've been humbled by their kind words, thoughts, and offers.
Segueing, this round of Dexamethasone/Decadron is much different from what I remember. I am much more in charge of my emotions and haven't had major mood swings. However, I am in a lot more pain than I remember being in before. My bones, teeth, and stomach hurt. I've been hungry, but certain foods turn my stomach and don't taste normal. I've woken up about 3:45, 4:30 the past few mornings just wide awake. I've been trying to listen to my body and do what it says to make life easier for these 4 days. Tomorrow is my first day without steroids. Coming off of them will be very difficult--like going 100 miles an hour then hitting a sudden stop. Again, I'm very thankful for my wonderful husband, who I have warned and my father has pitied for this round of steroids. Even when we forget, God is looking out for us.
Friday, October 29, 2010
Wednesday, October 27, 2010
An Ode to My Husband...or...Why Midwives Made Men Boil Water
Jimmy Swindell is the most amazing man I've ever met. I never really envisioned dealing with my ITP throughout adulthood, but I could not ask for a better partner for dealing with all this. When anything goes wrong, he is right there, asking what I need and offering to do things for me. However, when my nose was bleeding today and there was really not much he could do, I felt so bad for him. All he wanted to do was help make things better and yet, there were very few things he could do. Jimmy did get me some things I needed, drove me to school and Walgreens, and fixed my lunch, but he could not heat up a bowl of soup that would stop my bleeding. I hated it for him, but it led to a revelation.
This is why midwives made husbands go boil water when they were delivering babies.
When water had to be boiled for births, I'm sure it was an ordeal. The husband had to go chop wood, build up the fire, draw the water, and wait on it to boil. I've read that way back when, people obviously weren't on the up and up on hygiene, so really, there was no point in having boiling water. Obviously, it was a ploy to get men out of the way since there was really nothing they could do to assist the birth process, or so was the thought of the times, but at least getting the water to boil made them feel like they were doing something to help and kept them busy. Sometimes I think life was better then.
Don't get me wrong--Jimmy never got on my nerves or aggravated me with his attentions. I appreciated his lovingness and willingness to help during my grossest moments. There are some ITP-related things I never thought I'd do in front of people other than Mom and Dad.
Jimmy, I love you and am thankful beyond words for your love and support. You didn't pick an easy woman for a wife, but we make an amazing team. The next few days on decadron are going to be a rollercoaster, then this weekend coming off of it, but we'll make it through.
This is why midwives made husbands go boil water when they were delivering babies.
When water had to be boiled for births, I'm sure it was an ordeal. The husband had to go chop wood, build up the fire, draw the water, and wait on it to boil. I've read that way back when, people obviously weren't on the up and up on hygiene, so really, there was no point in having boiling water. Obviously, it was a ploy to get men out of the way since there was really nothing they could do to assist the birth process, or so was the thought of the times, but at least getting the water to boil made them feel like they were doing something to help and kept them busy. Sometimes I think life was better then.
Don't get me wrong--Jimmy never got on my nerves or aggravated me with his attentions. I appreciated his lovingness and willingness to help during my grossest moments. There are some ITP-related things I never thought I'd do in front of people other than Mom and Dad.
Jimmy, I love you and am thankful beyond words for your love and support. You didn't pick an easy woman for a wife, but we make an amazing team. The next few days on decadron are going to be a rollercoaster, then this weekend coming off of it, but we'll make it through.
Tuesday, October 26, 2010
Nosebleeds, ugh! A lengthy post
Today was the worst nosebleed of my entire life. I can say that scientifically, because usually they will stop after holding them a few minutes. Early on in my ITP journey, it would take longer to hold them, but they would stop for a while. I was getting ready to go to my second inclusion class of the day, at 9:45, and while using the bathroom noticed my nose was dripping a little bit. I held it for a couple of minutes and thought that would be enough. I've had a chest cold, but I didn't have any upper respiratory issues, just lower.
During the class, I tried to sit still as much as I could, since movement makes it worse. I was still sniffling a little bit. I took my second pull-out group at 10:15, still sniffling. I used some tissue to hold my nose, and since my kids were doing assessments and I've rearranged my desks as a group, we were good. They were productive and I was able to assist them as needed. But my nose still wasn't stopping. At this point, it was a little after 11 and I knew I needed to call Dr. M and get home where I could put my feet up and get my blood pressure as low as possible. Stress also makes my nosebleeds worse.
I got home and called Dr. M. He suggested I hold it for another 45 minutes and see if it stops. He called the Infusion clinic to see if space would be available should I need IVIG, and we would reconvene after 45 minutes. My dear, dear husband offered to bring me anything I needed. I lay on the couch, held my nose, and we watched "The Science of Dogs," a National Geographic 45 minute special. Perfect timing, right? My nosebleed stopped and I called Dr. M. We said, "Ok, sounds great, see you in December at our regular appointment."
Of course, 10 minutes after I hung up, it started bleeding again when Jimmy was washing out my washcloth and I had to use the bathroom. So we called back. We (Dr. M, Jimmy, and I) debated over whether Jimmy and I should come to the Duke ER (the infusion clinic was packed today and will be tomorrow) to get IVIG or if calling in a decadron (high dose steroids) would be more beneficial. In the time it would take for us to drive to Duke and get processed through the ER, I could have already taken the decadron and it begin working in my body. Dr. M called in the decadron. However, Dr. M still wants to see me in the morning, and we're going to do, "Whatever it takes to get that %*$#@^ spackled shut." Jimmy drove me by school (still bleeding) so I could set out emergency sub plans and talk to my principal. She is a bottom-line person, but that doesn't mean she doesn't care. She wants to know what's going on with her staff and help make sure we are taking care of ourselves.
Decadron doesn't come in a 40 mg tab, which is the correct dosage for me. IT COMES IN A 4 MG TAB. That means taking 10 pills at one time. But hey, I can do anything if it'll stop the bleeding. As soon as Jimmy and I got home, I took my pills. He went on to work. He and I decided we would just go to Rocky Mount (and stay with my wonderful MIL) after he got off work. I know he was worried about leaving me, but there was really nothing he could do, unless things got worse, and I'd already taken my meds. Jimmy gave me strict orders that, "If the shit hits the fan, call me, then call Lauren." I promised and got settled on the bed with a washcloth, a cup to spit in, a glass of water, and my laptop. I even took a short nap because I know steroids will mess with my sleep and make me super restless.
Right now, my nose has stopped bleeding. I can totally feel the decadron kicking in and am getting a lot of jittery energy. Heck, maybe I'll get the house cleaned before Jimmy gets home at 11:45 and we leave.
During the class, I tried to sit still as much as I could, since movement makes it worse. I was still sniffling a little bit. I took my second pull-out group at 10:15, still sniffling. I used some tissue to hold my nose, and since my kids were doing assessments and I've rearranged my desks as a group, we were good. They were productive and I was able to assist them as needed. But my nose still wasn't stopping. At this point, it was a little after 11 and I knew I needed to call Dr. M and get home where I could put my feet up and get my blood pressure as low as possible. Stress also makes my nosebleeds worse.
I got home and called Dr. M. He suggested I hold it for another 45 minutes and see if it stops. He called the Infusion clinic to see if space would be available should I need IVIG, and we would reconvene after 45 minutes. My dear, dear husband offered to bring me anything I needed. I lay on the couch, held my nose, and we watched "The Science of Dogs," a National Geographic 45 minute special. Perfect timing, right? My nosebleed stopped and I called Dr. M. We said, "Ok, sounds great, see you in December at our regular appointment."
Of course, 10 minutes after I hung up, it started bleeding again when Jimmy was washing out my washcloth and I had to use the bathroom. So we called back. We (Dr. M, Jimmy, and I) debated over whether Jimmy and I should come to the Duke ER (the infusion clinic was packed today and will be tomorrow) to get IVIG or if calling in a decadron (high dose steroids) would be more beneficial. In the time it would take for us to drive to Duke and get processed through the ER, I could have already taken the decadron and it begin working in my body. Dr. M called in the decadron. However, Dr. M still wants to see me in the morning, and we're going to do, "Whatever it takes to get that %*$#@^ spackled shut." Jimmy drove me by school (still bleeding) so I could set out emergency sub plans and talk to my principal. She is a bottom-line person, but that doesn't mean she doesn't care. She wants to know what's going on with her staff and help make sure we are taking care of ourselves.
Decadron doesn't come in a 40 mg tab, which is the correct dosage for me. IT COMES IN A 4 MG TAB. That means taking 10 pills at one time. But hey, I can do anything if it'll stop the bleeding. As soon as Jimmy and I got home, I took my pills. He went on to work. He and I decided we would just go to Rocky Mount (and stay with my wonderful MIL) after he got off work. I know he was worried about leaving me, but there was really nothing he could do, unless things got worse, and I'd already taken my meds. Jimmy gave me strict orders that, "If the shit hits the fan, call me, then call Lauren." I promised and got settled on the bed with a washcloth, a cup to spit in, a glass of water, and my laptop. I even took a short nap because I know steroids will mess with my sleep and make me super restless.
Right now, my nose has stopped bleeding. I can totally feel the decadron kicking in and am getting a lot of jittery energy. Heck, maybe I'll get the house cleaned before Jimmy gets home at 11:45 and we leave.
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