This Week...-6-10

It's simple to explain what a chronic illness is. It's an illness that doesn't go away. What that short sentence doesn't include is the emotional impact of a chronic illness. When I was first diagnosed, it was really difficult for me to deal with people who meant well, and were just trying to help. Until you do the research on autoimmune diseases, they are not easy to understand. When people are throwing advice at you from every angle, it's overwhelming and it made me just shut down.

Someone told my mom, and I can't remember who, but paraphrasing, "Women go into survival mode when there is a crisis. They might break down after it's over, but they just want to get through it while it's happening." When there are serious things going on with my ITP, I typically just want to hide from everyone, get through a particular episode, then go back to regular life. It's hard to know when this feeling is going to come up, and it's not every time I have an issue. When it happens, I do become distant. The only people I really want to communicate with are my husband and parents. It's just too much to deal with more than that. I just feel emotionally depleted. Which in turn then makes me feel guilty for not being communicative. It just kind of sucks all the way around. Today though, I'm finally feeling better and more like my normal self. Except for the butt stuck under my ribcage, which is a very odd feeling.

This week has been one of those weeks. We did have a wonderful weekend in Rocky Mount and Jackie and Jennifer gave us a wonderful baby shower! It was great to see everyone and we got some very nice and sweet things. When we came back Monday, I had to get bloodwork done. My counts were 5k. Dr. M decided to bump up my steroids from the 12 mg/day to do a 40/40/20/20 pulse, and will keep me on 20 until next week. Also, he wanted to do a 4 day run of IVIG. Now, usually when I have a count like this, OB wants me in the hospital. He was trying to get in touch with them and never heard back. So we spent almost 24 hours waiting to hear from them and never heard. I tried calling the office directly Tuesday and they gave me the on-call pager number, "for my hematologist to call." I had a meltdown and Jimmy had to talk to Dr. M. I was so frustrated because this man has worked his tail off for us, and the OB people are just not as on top of things, until they want to be. On top of that, the office in Jacksonville would be able to administer the IVIG, but had to get prior approval from my insurance--IVIG costs more than liquid gold and has no shelf life. I just knew that as soon as Jacksonville called saying, "We got approval, we're ordering it," OB would call 10 minutes later, insisting I come up.

Thankfully, OB decided I didn't need to come up, since we were doing everything they would be doing in the hospital, and I'm pretty sure promises of bedrest were made until my count went into the safe zone. Jimmy made me promise that I would stay in bed or sitting as much as possible. Jacksonville called and they would be able to do 3 of my treatments this week, and then we will have to do the 4th one at Duke on Monday, because I have regularly scheduled OB appointments. My first treatment was yesterday, and it left me feeling pretty miserable. Thanks to the steroids, my counts had already gone up to 82. Jimmy also put me under strict orders to "not do anything" while he was at work. He has been driving me back and forth, but since there's not a lot he can do afterward, he has gone into work. Today was not as bad--they ran the meds a little more quickly and I came home and slept. Tomorrow we start very early--7:30--as the clinic is only open for a half day.

The stress of not knowing what we were doing threw me into a complete nesting mode Monday night and I washed pretty much everything. Sheets, clothes, and blankets are washed and put into the changing table or in the crib. We just need to put up the fencing and clean out the paint stuff, then we can arrange the nursery how we want. I have been keeping up with my online pregnancy groups because I can share with them without feeling like I have to go into all of the medical stuff, unless I want to, and it helps distract me from my bubble.

Another Monday, another trip to Durham

Today was my 4th treatment.  Not that the 4th treatment is significant, but this was the first trip by myself and didn't have anything to crochet while I was waiting.  I happened to be between projects.  It may not seem like this is such a big deal, and I do love to read, but you have to understand the dynamics of a day at Duke and the Duke Treatment Room Waiting Room.

I arrive and check in for labs about 10.  After I sit down, I usually have less than 10 minutes to wait for my labs to be drawn.  I could pick up a book then, but would just have to put it down again, and I am always on alert for my name to be called.  After labs are drawn, I go down the hall and check into the treatment room waiting room.  The wait time here can be 1-2 hours or more.  I have to wait on my labs to get back and from those results my doctor determines whether the Nplate dosage needs to be increased.  There are people constantly in and out and any one of those people could be Dr. M with my counts.  Pagers go off, people are talking on cell phones, and Rachael Ray is cooking something or the women of The View are talking.  It's a very distracting environment and not conducive to reading!  When I've taken my crochet, it gives me something to do instead of just sit.  You can only play Angry Birds for so long and no one wants to sit and stare into space.  Then you're that weird person staring at everyone.  Needless to say, I have fresh yarn and a fresh pattern to begin!  And I got yarn for a project that has to be finished by March 11.  Very excited about that--these colors sat in the bin and YELLED at me to get them.

And so many people have been so kind and offered to go with me and I truly appreciate it, but I'm not ready for that yet.  That may sound odd to everyone but my parents.  I really do try to....not downplay the ITP, but not make it the driving force in my life.  I'm having to take a lot of time out of work, and part of me feels like if more people take time off work, it makes this a much bigger deal than it is--and this is maintenance therapy.  An emergency is different--I need/want support when I'm having urgent issues, because my urgent issues are a big deal.

Despite having a blog, my ITP is something I tend to keep close.  I think what I like most about the blog is I can just write.  I don't feel like anyone's going to feel sorry for me or pity me.  I don't like telling the same story forty-eleven times, so it's much easier on me than the phone.  If charted, my ITP history would look like a roller coaster with its good things and bad things.  Early on, I discovered how frustrating it is to have good news one day, bad news the next, and it's exhausting to relay all that to people.  My counts today were 244,000--in the normal range--YAY!--with the Nplate being the only medication.  This is really encouraging.  My dosage is going to stay the same for now, unless we see something different.