ITP and Me - My Health Update

Last Monday, Perry took the day off work so he would be free to get the kids off the bus while I went to my follow-up doctors appointment regarding my low platelet counts. The quick answer, is that I have an answer, but not a complete one.

Before my appointment began, I had another blood redraw to see what my platelet count was currently. That whole process takes only a few minutes, so I had ample time to sit around and wait as my doctor was running late.

At the appointment, my count dropped 3 units to 66 units. Though it is still much lower than the minimum of 140, it has seemed to stabilize, which is better than it roller coaster-ing I suppose. Receiving all the results from all the samples they drew took some time. Some were sent to Seattle, and some to Oregon State University.

She went through all the positive things first. I don't have a vitamin or iron deficiency, nor do I carry the gene for rheumatoid arthritis. That was relieving to hear, as it does run in the family on my dad's side. I did, however, test positive when they tested for lupus.

For those who aren't aware what lupus is, it's an immune disorder. Normally our bodies create protein, called antibodies, to protect us from bacteria, germs, and viruses. In people with lupus, the immune system can't tell the difference between the invaders and the body's healthy tissue, resulting in autoantibodies that attack and destroy healthy tissue. It can attack skin, joints, and/or organs.

Even though the test came up positive, it is not definitively clear whether or not I have it. More tests from a rheumatologist are going to be needed to confirm it's existence in my body. She said it could be from a difference immune disorder instead, and then rambled off a few. The only one I can remember is malaise. While I don't know much about malaise, I have read that it can be associated with depression and fatigue. I'll go in for more testing right before my trip with the kids to Montana.

The last report she pulled up was from a lab from Oregon State University that confirmed I do have an immune disorder - immune thrombocytopenia, abbreviated as ITP. To put it simply, my body is getting rid of my blood platelets too soon, so my bone marrow is working in overdrive trying to keep up a supply of platelets. Without platelets, my blood has a harder time clotting.

What does ITP look like for me?

Let's see... the big one is that I bruise easily. Really easily. My legs are constantly cover in bruises, most of which I don't know where they came from. While I haven't had much of a problem with it in the past, over the last month or so, my gums have started to bleed when brushing. It's more annoying than anything.

The bruises on my body tend to make me a bit self conscious. Most of the time, they are dark purple and just look terrible. The bruise on my thigh was from this past December. I went sledding with some friends, and never crashed once, but woke up the next morning to this. It took close to three weeks to heal itself. The other picture is of the back of my legs on Sunday. The bottom bruise on the right is now pink and purple. The tops of my thighs are also speckled with bruises as well. As I've said, I've always bruised easily, it's just more or less frustrating now knowing that I didn't do anything to earn that marking. 

Though my day-to-day life will continue to stay the same, I do have to be extra careful when getting sick as having bacteria, viruses, and germs in my body can cause a flare-up of my immune disorder - in this case, a drop in my platelets. Anytime I have spontaneous nose bleeds, or begin getting purple/red dots on my skin, I need to have my count re-checked incase it has dropped too low. If it drops too low, spontaneous bleeding can occur - not just having nose bleeds, but organ walls and vein/artery walls can break which could result in, well, death.

While I don't necessarily have to give it up, alcohol consumption must be done responsibly (obviously) because it can damage my bone marrow, which is responsible for making blood platelets. Other things that can do the same would be drinking things with quinine (like tonic water), or beverages with aspartame (like diet pop and low-fat/sugar free candy and pop). The hard part for me will be reducing the amount of tomatoes, garlic, onion, blueberries, and grapes I consume as they can hinder blood clotting as well.

One of these days, I'll get myself together a list of foods that I should be eating more of to help boost my platelet count, though diet isn't directly linked to ITP. Eating a well balanced diet is always beneficial though!

For now, I wait for July to come so I can chat more with the rheumatologist. Really, I just want to know why I'm so stinkin' tired. All. The. Time. Once a month for the next several months I'll return to the oncology clinic to recheck my numbers and hope they stabilize. If they continue to drop lower, we'll be talking about doing steroid injections. I'm hoping it doesn't come to that though! I'll update you when I recover from my trip to Montana :)

Here's to Hoping For Answers Soon

Moving was really hard on me, physically and emotionally. When is moving easy though? After 5 solid months here, I'm starting to at least feel settled, though I don't quite feel like I'm home. Maybe when I stop feeling like the new kid on the block, I'll start feeling like this is my home. Time will tell, but I'm still ready to move back "home." I broke down crying to Perry last week about just wanting to go home. I miss my people there!

Earlier this year, I touched on my anxiety in this post. I haven't had many anxiety attacks, but almost daily for several months I started to have, what I would call, mini attacks. For no reason what so ever, my heart would start racing. It's such an uncomfortable feeling! I was never able to pinpoint it to a trigger, but multiple times a day it would feel like my heart was going to beat out of my chest, and then after about a minute it would go back to normal. Always at random times too - waking up from a nap, vacuuming, doing laundry, talking to a neighbor, grocery shopping...

With Ms. Gail's birthday on the horizon, Grandma decided she'd come out for her birthday party and then take her to Seattle to have girl time with Ms. Gail's aunt and her little cousin. Knowing she'd be gone for a couple days, I took the opportunity to schedule a dentist appointment, and a physical at the doctor's office, since I hadn't had one since Ms. Gail was born. In order to have that done though, I had to go in for an establishing patient appointment first, so Ms. Gail came along to that one. (I figured it'd be so much easier and a lot less confusing and scarring for her to come with to that one than a physical...)

While at the appointment in early May, I spoke with my new doctor about my anxiety and lack of sleep. I feel tired all the time. She was thinking that my anxiety might be coming from lack of the good sleep. Though I "sleep" for around 8 hours every time, I would wake up almost at the same time every night and then toss and turn for the rest of the night. No pillows, or sheets, or room temperature seemed to change any of my sleeping habits. She ordered a few blood tests to rule out thyroid problems and such, and started me on some meds to help with sleep.

I think anytime you start new meds, there is an adjustment period. The pharmacist basically said you'll probably just get dry mouth as most of the possible side effects listed are more common in the higher doses. The first day on them was a little rough. I felt nauseous, weak, and I was having a hard time getting words to come out of my mouth correctly. That was really frustrating for me - flipping words around or just slaughtering words altogether. I wasn't seeing a huge difference in my sleep after a few days though, so I jotted it down on my list of more things to talk to the doctor about when I go back in two weeks.

Later that week though, my blood tests came back. Everything was normal except for my platelet count. The nurse explained the range for a normal amount of platelets starts at 140. Mine were at 83 so the doctor wanted me to come back in a few days for a re-draw. The next week roles around and I bring Ms. Gail back with me for another sampling. After the technician drew another sample, I held the cotton swab over my vein while he labeled the tube and such. Some alarm should have went off in my head when he checked it and it didn't immediately clot. It finally did, but by the time I got to the car, I noticed, I had sprung a leak again. I was able to use my first aide kit in my car to redress it, and then it seemed to heal fine.

A few days later, the nurse called again, and began with, "don't panic" so I immediately panic. My platelet count had dropped to 47 in a week. Because of the significant drop, my doctor was wanting to send me to an oncology clinic to get my blood tested yet again. She was quick to alert me, "She doesn't think you have cancer, so don't be scared about the name, they have blood specialists there." Oh good. Still doesn't make me feel any better. The nurse from the oncology clinic called me the next morning to schedule me an appointment. She was a little more clear as to why I was being sent there.

In short, my doctor is thinking I might have idiopathic thrombocytopenia purpura, ITP for short. To sum it up, it's an immune disorder that can lead to easy or excessive bruising due to the low levels of platelets. (I've been an easy bruiser for quite some time now. It's to the point where Perry will bump me and then joke, "Oh you're going to have a bruise there now." I never thought much of it though.) When your platelet count drops into the 30s, you have severely low platelets and it's at that level that spontaneous bleeding could occur internally. She strongly cautioned me to lay low over the weekend, no strenuous activities that could cause bumps and bruising, and NO SHAVING because you could knick yourself and have problems with it clotting. Ohh yay... Aside from that over load of news, it was Ms. Gail's birthday weekend so I was already on edge about getting her cake done, but then I was starting to get anxious about my upcoming appointment at the oncology clinic, plus my meds were making me irritable. Such a wonderful combination when I have guests... Just kidding. Things got pretty tense here.

Once Ms. Gail had left for her little vacation, I headed across town for my re-draw. I was told I'd have an appointment with another doctor shortly after to go over the results, but their machines were down so the samples had to be sent out. They were able to at least get a few results back from the 12 or so test tubes they took. In short, my count went up a few notches to 69. Still way lower than it should be though. We briefly discussed treatment for ITP after ruling out other possible reasons for the low counts. We'll discuss it more next week at my follow-up, but possible treatments would be weekly steroid injections to get my numbers up and then taper them off after a few months, or there's the option of doing an immune globulin injection which is a two day hospitalized procedure. Once the other results get back, we should know more about what exactly is going on. Is it an immune disorder? Is it a vitamin deficiency? Do I just naturally have low platelets? We shall see soon...

At the beginning of May I had gotten a cheap version of a FitBit to help me track my sleeping patterns, but mostly to check my heart rate. Anytime it was racing, I was able to look at my wrist and see - is it racing, or is it in my head. I was constantly checking it for about a week. And then all my anxiety symptoms seems to immediately stop. My anxiety started in August. You know what I learned in August? That my mom had cancer. You know when she was done with treatments? The same time my anxiety stopped.

Early in the school year, I had a little chat with HD's teacher, as she just happened to call me at the wrong time so I broke into tears over nothing, so I had to apologize an explain what was happening in my home life so she could be aware of it for HD's sake. Anyways, her mom also had cancer several years ago, and looking back on it, she remembered nothing of it - not helping her with the day to day stuff that she was too tired to do, taking her chemo, or fixing her food. She completely blocked out everything going on with her mom, and can only recall how stressful and hard it was on her, not her mom. For whatever reason, that's always stuck with me too. It's never easy watching someone we love and care about go through difficult things, but I have to wonder if that's where my anxiety came from...Timing is quite a coincidence though!

My Anxiety Kicked In Again.

It's nearly been a month since I've been back to my blog. At the beginning of the year, I said I really wanted to get back to blogging regularly, and I still really do! Every time I think about sitting down to write for a few minutes about some significant happenings, I get overwhelmed with what to write about, and instead jump on to Shutterfly to work on my yearbook. I've been making one every year for the past several years, and while everyone enjoys looking through them, it really bogs me down in January and February. I finally hunkered down last week and put the final touches on it - I'm eagerly awaiting it's arrival next week!

In the meantime I've been keeping busy with home projects - mainly painting. My dad gave me a seven day notice of his and my mom's arrival. It was just enough time to complete the "paint the ceiling" project that started when we moved in. While I was at it, I painted in the kitchen ceiling too. It was white, but needed a lot of love from all the cooking that had been done over the years. The last painting project I finished up before their arrival was picking a paint color and painting the dining room/transition-into-the-kitchen wall.

Picking paint colors has been a huge stressor for me. I sent myself into a little downward spiral when it came to picking colors for the living room. It was terrible. This time around I tried really hard not to over think the color, though I did spend a good chunk of time thinking about what color to make it. All of my walls were a shade of grey - brown. I love color, but went neutral and love how everything has turned out so far, but I knew I want to add a bit of personality to the mix. Keeping with the rustic feel of our home that we are trying to achieve, I was going to go with a mossy green, but somehow found myself going with more of a teal. The color I chose was called "Grey Green Teal" which on the swatched looked more green. When they mixed the paint, it looked green, when I poured it into the painting pan, it was green. However, when I started painting, it was blue. And Perry wonders why I get so much anxiety over colors...

Fast forward to yesterday - we swung by Home Depot to pick out some paint for the basement, and a few other things. After asking for my hubby's opinion on the final colors and his response being "I don't care," I was sent into a bit of an anxiety attack. My heart started racing and I started feeling sick. His response was just the "stick that broke the camel's back" after having to re-think my stairwell project and wrangling the boys in the process.

I haven't felt this way since last fall with my neighbor fiasco. I can handle feeling sick and having sweaty palms, but I absolutely hate when my heart feels like it's racing. It's a very uncomfortable feeling. The most frustrating about it all is not having my husband understand. I can't just stop feeling the way I feel, and I can't just calm down. I over think things all the time - I can't help it!

I haven't slept through the night since before I moved. While at mom's house, I chalked it up to having a child sleeping in bed with me. After the big move, I figured it was because I was just too hot at night, which might be part of it, but when I keep the room really cold... I've started taking melatonin before bed, which has helped a little, but I still toss and turn every night. Is it my anxiety? I'm not sure. I just want to sleep! I've expressed to my hubby numerous times about how I feel lazy and don't accomplish much throughout the day because I'm just so tired. 

Right now I'm feeling a little overwhelmed with all the projects going on at home. I started taking down wallpaper in my stairwell so I could get that painted before our guests arrive this week, but that was put on the back burner when I saw my hubby peeling wallpaper in the basement so he could put up trim around the windows. I know he was trying to make it easier for me when it came time to paint the basement, but that ended up with me striping a good half of the basement of wallpaper. Just as I was cleaning up the mess, he started tearing down wallpaper in the bathroom for the same reason, to make it easier for me when it came time to paint it. Now I have too many open projects and I want to do them all at once. 

One of these days I'll get up a few pictures of all the updates we've done around here. But not today. I'm going to try to complete a few of these projects in hopes of feeling less overwhelmed...One thing at time.