ITP Awareness Month: My story

September is ITP Awareness Month, so I thought I’d share my ITP story with you.

First, some key bits of information so that you know why it’s such a big deal:

  • ITP stands for idiopathic thrombocytopenic purpura which is, essentially, a very low platelet count. A normal count is 150,000-400,000 (generally said as 150-400).
  • The lower the number, the higher your risk of bruising and prolonged bleeding/healing—or at the extreme, spontaneous internal bleeding and haemorrhaging (‘brain bleeds’ and such).
  • It is classified as a rare autoimmune disease.

This story is about my personal journey. If you want more information on ITP, check out the following links:

Right. Now let’s get this story going!

My story begins in late 1995 when I was just 21 years old. My energy levels were sapped and I could barely drag myself out of bed most days. My arms and legs were covered with bruises; my gums bled when I brushed my teeth; cuts took ages to stop bleeding and even longer to heal. It took a while for me to fully realise that something was wrong, at which time I went to the local clinic to be checked out. By this time it was January 1996.

It was only an hour later that I was called back into the clinic for more blood work because my platelet count was in the single digits and they thought it might be wrong. A subsequent draw gave similar results. Then there was a bit of panic with the nurses and doctors who were making loads of phone calls before prescribing me some prednisone and asking me to come back the following day.

In the days to follow, I had my blood drawn almost every day. I also began to experience the evil side effects of the steroids. But despite the medication, my platelet counts never rose above 30. I was frightened, to say the least.

Soon, my rural family doctor made an appointment for me with a haematologist in Seattle. I didn’t have anyone to take with me, so I made my way on my own and found that the haematologist’s office was in the Oncology Unit. You know, like cancer! As I sat there in the waiting room, watching cancer patients come and go, I began to cry. I was even more frightened by this time and there was no one there to hold my hand.

Meeting with the haematologist was strange. She talked to me about the possible causes including leukaemia. She also talked to me about the various tests she needed to run—some of which required bone marrow aspirations. As I left the hospital, I was shaking. I was still no closer to knowing what was wrong with me, but I was increasingly frightened that it was the worst case scenario. (The side effects from the evil prednisone didn’t help.)

Eventually, it was decided that I had ITP and that they would do a splenectomy to ‘cure’ me—a decision I felt I was bullied into at the time and one that I regret to this day. My surgery was April 1996 and by June of that year my counts had stabilised to a ‘normal’ count of around 160, though they would drop to the 80s when I had a cold or other illness.

Unfortunately, by February 2002 my body decided that stable wasn’t good enough and my counts took a drastic nosedive—with a count of six (yes, 6) on my birthday. Once again, I found myself back on the prednisone. And, once again, I found myself frightened. But because the prednisone wasn’t working this time, they put me on azathioprine as well.

It took several months for my body to regulate itself again, only this time it stabilised at an average count of 70-80. Which meant that getting sick means drops of 40 or below.

Today, my average counts are still around 80, but I have had a couple of 150-180 counts, too. (Which makes me happy.) But, sadly, I still get low counts (my last low was 13 back in March).

What does this mean for my life? Well, it means that I have to listen to my body. It means that I have to be careful and pay attention to any new bruise. It means I have to keep an eye out for signs of a low count (fatigue, petechiae, nose/gum bleeds). It means that when I get a cold, I get a double-whammy of a low count. It means I have to be careful around things that can lower my counts (chemicals, certain foods). And, frustratingly, it means that I have to argue with people who think that I need to be treated like an invalid.

But I can still live my life. I can still run and play and do things. Yes, I have to be careful and I have to use common sense, but that doesn’t mean I don’t get to enjoy life.

So, that’s my story. It’s not interesting or anything, but at least I’m alive to tell it!

[That’s a picture of my platelets that I drew when I had a count of 10 in January 2011.]

Quiet-ness

I’ve been quiet again. (Still?) So I feel that I should pop in and say hello, since so often I’m quiet when life is hard and I’m feeling down. But that’s not the case right now. Well, mostly not the case.

The past two weeks have been… interesting. In fact, this past week it got even more interesting! I’ve had a lot going on and have been mulling over all sorts of things. Some good; some not-so good; some potentially good but yet undetermined. But nothing life threatening. (Life altering, maybe.)

I’m being vague. I know. And I’m sure that there are a few people who may think they know what I’m talking about. But they don’t. (I know! More vague-ery. Is that a word?)

Anyhow, since I’m not really in a position to share the interesting-ness of the last couple of weeks (yet) I’m just checking in to say that life is mostly good right now. I am busy working on my dissertation and am filling out job applications like a mad woman.

But since I’m being vague, I’ll at least share a few highlights:

  • I finished a swirl drawing for my lovely [former] foster daughter. (I must get it in the post next week!)
  • I had a platelet count last week and the results came back at 164. Yes folks, that’s in the normal range. Awesome!
  • I am running the Edinburgh Half Marathon tomorrow. Only I didn’t get registered in time, which means I’m running as someone else, since they kindly sacrificed their entry for me.

Anyhow, I expect that the next couple of weeks will be weird and filled with more mulling. (And job applications.) But I’ll try not to be too quiet.

[Photo is the swirl drawing I’m sending to the kid. She is, after all, one of my biggest swirl fans!]

An ode to my platelets

Once again, I’ve found myself with a lower-than-ideal platelet count. Well, it was very low last week (13!) and I had them re-tested today. Hopefully when the results come in later this week, they’ll be better. In the mean time, I have been referred to a haematologist again. Not that they can fix me, as this silly little condition seems to be sticking around.

But it got me thinking about my poor little platelets and how much I love them. I mean, first of all, my bone marrow is a bit stingy with its output of the little guys. So they’ve already started out life at a disadvantage for their required job. And if that’s not bad enough, my immune system bullies them to death. Literally.

So when you hear me complain about a low count, it’s not the platelets I’m angry with—no, they’re fighting the good fight and they’re doing it with a super-small army and are up against the rest of my body. I love those little guys. They’re my friends. And so I’ve decided to write them a poem. (I hope my prose isn’t so bad that they in turn commit suicide!)

An ode to my platelets
by Just Frances

Oh platelets, my platelets
You circulate with grace
You plug, you clot, you scab
You are constantly under attack
By my over zealot immune system
But you fight to help spare my life

Oh platelets, my platelets
How I love you so
You are few in numbers
But still you rush
To fix my cuts and scrapes
Your dedication means the world to me

Freedom of the City

My day started out pretty lazy and I didn’t have plans of leaving the flat until early afternoon. But then I learned that there was a military pipe and drum band making their way through town. Which meant that I needed to get dressed and get a move on my day. And I’m so glad that I did!

The reason for the parade was that the Royal Regiment of Scotland was given the the honour of The Freedom of the City of Stirling. [Read the BBC’s story about the event here.] And since you weren’t able to be there to see it (or were you there and I missed you?) I’m sharing the video I made of the event. Yay!

After the parade finished, I made my way through the Stirling Farmers’ Market to pick up some fresh produce, buffalo steaks, and a bit of smoked cheddar. I even ran into someone from one of my classes and had a nice chat. It’s always nice to run into people I know!

So, now I guess I need to return to my weekend of rest. Yep, it would seem that I have a low platelet count after last weekend’s cold. For those counting, the count was 13. But don’t worry, I’m sure they’re on the upswing again.

Paranoia

Last week I finally got around to seeing my new doctor and this week I’m regretting it just that little bit. You see, on the outside I look like a perfectly healthy, 37-year-old woman. (Though some people think I look younger than that, which is cool.) On the outside, no one would ever guess that on the inside my body is not-so-healthy.

Of course, the problem with looking healthy and (mostly) feeling healthy is that I sometimes forget that I’m not as healthy as I appear. And when I neglect to go to the doctor’s office for checkups, I can forget a lot easier. (Kind of.)

Anyhow, back to the story: Last week I went to meet my new doctor and he promptly had me schedule an appointment for blood work—a standard procedure for someone with ITP. So, on Friday afternoon I went back for labs and was told I’d have the results in about a week. And when the phone rang Monday morning and the person on the other end introduced herself as someone from the clinic, my heart sank. It’s never a good thing when you get a call…

And so, yesterday I learned that my platelet count is 50. (Normal range is 150-400.)

Now, that’s not a really bad number (I’m normally around 70-80) but it’s always a bit worrying because I never know if a lower-than-my-normal number is because it was really low and is now climbing up, or if it’s on its way down. Which means stress and worry and paranoia.

The doctor wants me to go back in on Monday for another blood draw to see where I am. I’m hoping that it’s climbing up because I’ll be a little (maybe even a lot) sad if it goes lower.

And that means that for the next few days I will be obsessed with ITP and platelets. I will worry about this, that, and the next thing. I will have irrational fears that it’s getting worse. I will dream about cutting my finger and bleeding forever. I will second guess every niggly little twinge (Yikes! Is that spontaneous internal bleeding?) and will panic at the smallest bruise. I will be afraid to exert too much energy and I will worry that I’m pushing myself too hard. I will wonder if I’m tired because I’ve just spent a day running errands or if it’s ITP-induced fatigue.

I’m always careful and aware of my condition(s), but it seems that my carefulness goes into overdrive when I know that my counts are low. You see, this is why I shouldn’t have gone to the doctor. It I hadn’t gone, I would never have known, and I could have carried on pretending that I’m just a normal, every-day, healthy 37-year-old woman.

However, it’s OK. I’m OK. Everything will be OK. So please don’t worry about me. I’m not in any danger; I’m not sick and dying. I just have a lower platelet count than I want.

It’s days like this when I really miss Paul. I mean, he would be just as obsessed as I am about my counts and would commiserate or celebrate with me when the numbers came in. And, of course, if they were lower than I’d hoped, Paul could be counted on to wait on me hand-and-foot and completely fuss over me with his ‘A woman in your condition…’ line. And even though I didn’t need to be fussed over, it was nice.

But now the real question is how I can spin this so that I can get my friends to fuss and take pity on me and come over to clean my flat. You know, because I shouldn’t stress myself out just now. You know, in case it has an adverse effect on next week’s counts. I mean, a woman in my condition… (No? No volunteers? Darn!)

[Note: That’s a picture of my platelets from last year. So, those 10 guys are like the ancestors of the 50 I have now.]

Why run?

I’m running my first—and last—ever marathon in the morning. I’m pretty excited about it, but at the same time I’m rather dreading it. You see, I don’t actually enjoying running exceedingly long distances. 10Ks and 12Ks are fun. Heck, even the occasional 10-miler or half marathon would be an exciting race to train for. But a marathon is 26.2 miles and is simply too long to enjoy.

Of course, that statement makes one wonder why I’m going through this torture in the first place. So, let me tell you!

I am running a marathon in the morning because Paul didn’t; because Paul can’t; because Paul died about a month before his first marathon.

When we first met, Paul was anything but athletic. Then, shortly after we got married, he decided to join my gym with the caveat that it was a one month trial—and the insistence that he would hate it and quit. In fact, in the first week or so I thought he would! But then he found the treadmill and was pretty excited about that.

A few weeks after finding the treadmill at the gym, Paul set a goal to run a 5K. But he would never run more than that. Then I mentioned the Spokane Bloomsday 12K and he was uninterested (too far, you understand) but eventually he changed his mind and ran that. But he would never run further than that.

Then he ran his first half marathon. And then he started to talk about how he’d like to run a marathon before he was 50. So when he decided—at the age of 47—that he was ready for that first marathon, I smiled. After all, he only ever wanted to run a 5K!

Paul loved running. It became a true passion in his life and he was good at it. And he trained and trained for the marathon—he even ran whilst we were on our last holiday to England.

Paul died a week before what would have been our third run at the Bloomsday 12K—and a month before the Coeur d’Alene (Idaho) Marathon. The Bloomsday 12K took place the day after his funeral, so there was no way I could have done it, but at the time I felt this odd need to run (or at least walk) the marathon for him. But that was silly since I could barely stand on my own two legs for the first few months after he died. In fact, I gave up running all together for quite a while after he died.

Anyhow, I eventually got back into running again and felt the need to run a marathon before what would have been his 50th birthday. And that would be this November, so I needed to get in gear and start training!

Of course, I am not really in shape for this adventure. I don’t have the stamina to run that far. Between my blood condition and kidney disease (and pure laziness), I’ve been struggling with getting the training in and maintaining my health. In fact, often times I can hear Paul yelling at me about how a woman ‘in my condition’ ought not be running a marathon. I can also hear him nagging me about getting my training in and about how I need to be careful not to make myself sick and about how I need to eat my breakfast—especially on training days—and that I need to remember to cross-train.

But, as Paul well knows (knew?) I am stubborn and when I say I’m going to do something, I do it.

So that’s why I’m running. I’m running for Paul. But since running for Paul makes me feel happy, I suppose that I’m running for myself, too.

Oh! And I managed to talk Rebecca into running with me. She’s running for her own reasons as well as for charity. (Don’t be shy you don’t have to know her to sponsor her!)

Paul: I know I won’t enjoy this race as much as you would have. And I know that I won’t make as good of time as you would have. And I know you probably don’t think I should be doing it at all. But I know you’ll be there cheering me on. I love ya, luv! xx

Lost voice messages

[Note: This post has nothing to do with phones or other technology.]

Just before bedtime on Sunday I started to feel a bit of a tickle in my throat and by the time I woke up Monday morning, my voice was gone. (I think the tickle stole it!) I was certain it would get better as the day went on so I headed into the office. Only my voice didn’t get better and I found myself sipping mint tea just to keep going.

By last night my body was beat so I went to bed early hoping that a good night’s sleep would coax my voice out of hiding. Instead, I had a miserable night’s sleep because my throat was so very sore and swollen that I was in too much pain for proper rest.

So this morning I woke once more only my voice was completely gone by this point—not a squeak to be heard—which meant sending an email to the office to let them know I wouldn’t be in. But I still needed to go to town to take my foster daughter to day care, which meant that I might as well stop by the doctor’s office. And since the kid had a ride home, I didn’t have to stick around when I was done.

Anyhow, the doctor says I don’t have strep throat, which is awesome. And that I have a platelet count of 100, which is almost unheard of for me, which is awesome. And since I was in town with a sore throat I took the opportunity to pick up a few messages. (Ah! There’s that word from the title…)

And when you have a sore throat and have lost your voice, you need to have think carefully about what sort of messages to get. I chose apple juice and lemon-lime soda, apple sauce, chicken noodle soup, and fresh raspberries (one pack didn’t survive the drive home). Oh, and just in case my voice comes back and my throat stops hurting, a bag of pretzels and some cheese-in-a-can.

But for now, I think I’ll pour a glass of apple juice and soda and attempt to kip for a couple of hours…

(Do you like how I’m starting to use more Scottish terminology in my blog?)

For the last time

Well folks, the Bloomsday 12K results are in. But I’m going to get all melancholy for a bit before I get to that part.

You see, it dawned on me sometime last week that this may very well be the last time I run Bloomsday. It’s not my hometown race and once I leave the Palouse it won’t exactly be convenient to participate. Sure, about a dozen people travel from my hometown for the race each year, but I’m not returning to my hometown; I’m returning to my home county.

It also dawned on me that this was the first time I participated without Paul. We were registered for the race in 2009 but he died a week before the starters’ gun went off. Of course, knowing that it was a matter of ‘when not if’ Paul died, part of me is glad we didn’t run it. I mean, what if the ‘when’ was whilst he was running a race with 50,000 plus people? I don’t know how I could have coped with that. (I know: Whatifs are silly things. But the mind seems to go there from time to time!)

Anyhow, I am a bit sad about my time. I mean, I came in under my goal of 1:45 (just) but it was a whole 23 minutes slower than my last time. And we’ll not talk about what my time would have been in my teens and early-20s when I was at my top fitness!

I know I shouldn’t be upset. After all, my physical, mental, and emotional wellness really took a hit when Paul died and I’m not yet at my pre-widowed levels. (I might not ever be!) I also have to remember that I have had two severe platelet crashes since January—the last of which was just two weeks before the race when I sat in the doctor’s office discussing the possibility of a platelet transfusion. So, really, I probably shouldn’t have been running in the first place! But, I guess that my slow speed is just another indicator of how much life has changed for me in the last two years.

So, now that Bloomsday is done, I guess it’s time to start thinking about that marathon in October. And, of course, the hometown Runner Stumbles 10K over 4th of July weekend—my last American race for who-knows-how-long.

And, finally, here are the times for our group:

  • Nearly-12-year-old nephew, Haden: 1:41:39
  • Me: 1:44:22
  • Nearly-13-year-old niece, Flik: 2:10:14
  • My sister, Celeste: 2:11:31
  • Nearly-12-year-old foster daughter: 2:11:34
  • My neighbour (Kerry): 2:42:28
  • Kerry’s friend, Leslie: 2:42:28

Don’t forget to check out some of our photos, too!

100 random things

My friend posted a list of 100 random things her daughter wrote about herself out of boredom and I thought I’d give it a shot and create my own list. So, if you’re not already bored, this should help…

100 Random Things about Just Frances

  1. I am the preantepenultimate Cook Girl.
  2. I enjoy showing off my vocabulary skills.
  3. I cringe when I see incorrect grammar, spelling, and punctuation. But I only correct errors when I’m being paid to do so. [To clarify: I generally correct the errors in my mind, but only tell people of the errors when I’m paid or otherwise requested to do so.]
  4. I think that demonstrating the ability to change a vehicle’s tires and oil should be a compulsory part of passing a drivers’ license test.
  5. I wear glasses and will never get eye surgery because I like that the glasses obscure the fact that I don’t wear makeup.
  6. I’m a distance runner. (Well, I dabble in the sport at least.)
  7. I am Catholic.
  8. I joined the school cross country team because the coach asked me after church in front of my dad and the priest. How could I say no?
  9. I have never felt at home in my hometown.
  10. I am proud of my small town red neck roots.
  11. I found my true place of belonging in Scotland nearly 10 years ago.
  12. I am returning to Scotland later this year!!
  13. I am rubbish at math[s] and I don’t care.
  14. I am correct handed (also known as left handed).
  15. I believe that there is a conspiracy in the works by right-handers who are jealous of us amazing lefties. Even pens are made with righties in mind! (But not all of them!)
  16. I have hazel eyes that are more on the green end of the spectrum, but wish that I had truly green eyes.
  17. I pretend to be happy even when I’m sad.
  18. I can’t fake tears; I’ve tried.
  19. I am dyslexic. (Yet I edit things for a living. Ironic!)
  20. I had speech therapy as a child.
  21. I am the co-inventor of the term SUBS Syndrome and hope that one day the term is widely used to describe the condition of sudden, uncontrollable bursts of sarcasm.
  22. I honestly believe that the media is helping to perpetuate ignorance in our society. The biggest culprit being the “news” media.
  23. My master’s degree will be in media and culture, so I’ll get to do a lot of research on this very issue!
  24. I once sang on stage with Pat Benatar who was opening at the Gorge Amphitheatre for the Steve Miller Band. Really. True story.
  25. I’m a little bit country and a little bit rock-n-roll all at once.
  26. I like candy, but I could live without chocolate.
  27. I love to fly!
  28. I prefer the aisle seat on airplanes.
  29. I say a prayer asking God to guide the hands of the crew and to keep us safe in our journey; and I ask that if His plans don’t include our survival that He comfort our loved ones. I do this for every take off and landing because something compels me to.
  30. I try to order low-sodium meals on the plane and drink lots of water so that I’m refreshed and non-puffy when I arrive. I even wash my face 2-3 times on long flights to/from the UK. I think it helps the jetlag. But that might not be true.
  31. I can’t decide which movies I like better: The Godfather series or the Monty Python movies.
  32. I have polycystic kidney disease. It’s a genetic condition with no cure. But some smart people are working to find a cure!
  33. I have a blood disease called idiopathic thrombocytopenia purpura. Even the haematologists who study it don’t know much about it. Which sucks for me.
  34. Despite my medical maladies, I think I’m mostly healthy.
  35. I dream that my doctor will one day say “To live a long and healthy life you must eat lots of good steak and salty, deep-fried foods, drink lots of wine, and smoke.” Of course, if I hear those words I know it’s time to find a new doctor.
  36. I cry myself to sleep at least once a week.
  37. I recently ended a friendship that I didn’t want to end. I’m sure it will be one of the reasons I cry myself to sleep over the next few weeks.
  38. I haven’t slept through the night since Paul died.
  39. I sometimes wonder if I’ll ever sleep well again.
  40. I thought that I was ugly growing up because one of my sisters told me over and over again that I was. (Funny, we all look alike!)
  41. I thought that I was stupid growing up because a couple of my teachers said I was.
  42. As an adult, I’ve learned to love myself and know that I’m good looking and intelligent.
  43. One of my Paul’s friends told me that I’m a great person and I’ll find someone new when I’m ready—but that I’d have better luck if I’d dumb it down a bit. (Said person has likely never been married for a reason.)
  44. Several of Paul’s friends have become my friends and I don’t think I could have survived the world without him without them.
  45. I didn’t go on my first date until I was 20 years old.
  46. I married my first true love.
  47. We were a month shy of our 4th anniversary when he died.
  48. I try to be happy and enjoy life because I know it’s what Paul wants for me.
  49. I sometimes think that I’ll meet someone new and fall in love and get married again and I know that Paul would be OK with that. But I can’t be bothered to date because no one is good enough for me.
  50. Thinking that no one was good enough for me is what gave me a reputation for being an overly-picky dater in my 20s.
  51. Being an overly-picky dater meant that when I did land a man, I got the best one on the market!
  52. A stupid woman once told me that the reason I can’t have kids is that God thinks I’d be a bad mom.
  53. I have been a foster mom for a little over six months now—so at least the State of Washington thinks I’d be a good mom!
  54. Paul and I planned to adopt two adorable children before he died.
  55. Sometimes I’m heartbroken that I may never get to be someone’s mom.
  56. I have 17 nieces and nephews and 2 great nephews.
  57. It irritates some of my sisters that their children want to be so much like me.
  58. I’ve had green hair. And pink, purple, blue, yellow, orange, jet-black, and bleach-blonde. Sometimes multiple colours all at once!
  59. My favourite colour is green.
  60. My first car was a 1978 Ford Granada.
  61. My friends and I sanded it down, primed it black, and then painted a big yellow smiley face on the hood and flowers and peace signs all over the body. It was awesome.
  62. I passed my driving test on the first try.
  63. I taught Paul how to drive.
  64. I’ve taught some of my nieces and nephews how to shift gears. (But please don’t tell their moms!)
  65. I have a fascination with butterflies and have since I was a young child.
  66. I have a butterfly tattoo.
  67. I played clarinet in the school band.
  68. I am training for the Loch Ness Marathon.
  69. I am a Pisces.
  70. I was born in the Year of the Tiger.
  71. I don’t believe in astrology stuff.
  72. I will be 37 years old on Monday.
  73. I don’t really like to make a fuss about my birthday.
  74. I have read dictionaries and encyclopaedias for entertainment since I was in junior high.
  75. I don’t like romance novels because they make me uncomfortable.
  76. My friends think I am a prude.
  77. I try never to use profanity because I think it’s vulgar and shows a lack of respect. (But sometimes it slips out in a heated moment of upset.)
  78. I taught myself how to knit and crochet but can only make basic things like scarves and afghans.
  79. I like root beer.
  80. I don’t really care for Coke or Pepsi.
  81. When I was in my late-teens and early-20s, I’d hang out at the local 24-hour diner with my friends drinking coffee and eating cheesy fries with ranch dressing. It was awesome!
  82. I am considered a computer and gadget geek by my family and friends.
  83. I love Doctor Who, but I hate SciFi.
  84. I define SciFi as anything I don’t like.
  85. I always like to have the best gadgets in the room. Sadly, some of my new friends are gadget geeks with better incomes so this is hard to do now.
  86. I love my family.
  87. I am going to miss my cat, Schrodie, so much when I move to Scotland.
  88. I am going to miss my family so much when I move to Scotland.
  89. I used to have Mork & Mindy suspenders (braces) when I was a kid and I wish I still had them now.
  90. I loved Weebles as a child. They were awesome they way they weebled and wobbled but didn’t fall down!
  91. I always wanted tassels on my handlebars when I was a kid. But not so much that I got them as an adult.
  92. My favourite toys growing up were a telescope, a microscope, a rocket kit, and an electric circuit board kit.
  93. I don’t like gold-coloured jewellery.
  94. I like dirty martinis with extra olives.
  95. I drink my coffee strong and black with no sugar.
  96. I am excited about starting grad school in September.
  97. I am afraid that I am ruining myself financially by going to grad school.
  98. I am convinced that going to grad school will fix me emotionally and mentally.
  99. I am excited about my future for the first time since Paul died.
  100. I feel guilty for being happy about this new life, even though I know Paul would be happy for me.

Wow! That was hard! Are you still reading? You deserve an award for that!!

Edited to add: Since folks have been asking where/what their award is, I feel it’s fair (OK, not fair but cheap) for me to say the award is knowing me that little bit better. Sorry it’s so lame! (But thanks for reading!)

The life of tiny platelets

A low platelet count means I’m on rest orders from the doctor. My foster daughter is spending the night at a friend’s house. I’m too cheap to pay for cable so I’m watching The Godfather for the gazillionth time. Which means I’m a bit bored silly at the moment.

I’m also totally obsessed with my blood disease, idiopathic thrombocytopenic purpura, right now. Which seems to happen any time my counts are lower than 50. (Normal is 150-400; mine are generally around 60-80.)

So, to entertain myself I searched ‘platelets’ in YouTube. And I found a series of three really corny animated videos that I thought I’d share with you.

Apologies about going on and on about platelets. I promise to knock it off as soon as mine get back to ‘my’ idea of normal. (Soon, I hope!) In the mean time, you can bore yourself and your children with lessons in human clot creation! (Yay!)

Ten

Following up on yesterday’s spotty confession, I had a blood test today and had a platelet count of 10.* This means that I am officially on rest orders.

It also means that I am officially sad. I mean, I’m used to my counts being low, but 10 is lower than low. Ten is a dangerously low number that reminds me of the constant risk I face since I don’t always know what my counts are from one day to the next. Ten is a number that reminds me that no matter how well I feel, my body is constantly fighting a war with itself.

In the old days Paul and I would have commiserated together. Just as we would have celebrated a count of 80+. (A normal count is 150-400.) It’s not that I want to throw myself a pity party or anything, but sometimes it feels good to rant and cry and complain about it to someone who sort of understands.

Oh well. I guess I’ll just think about the good things about having a dangerously low platelet count:

  • It’s a great excuse to make my guests do all the work when I have a house full of people over for Burns’ Supper in a week’s time
  • It’s a great excuse for not beating my 11-year-old nephews in the Freeze Your Fanny 5K (because you know I’d kick their fannies otherwise!)
  • It’s a great excuse to sit on the couch eating junk food for the up-coming three-day weekend (that’s following rest orders, right?)

And, of course, because there were so few platelets I was able to draw a picture of them for you. I stopped short of naming them, but please feel free to offer name suggestions if you feel so inclined.

* Counts are actually in the 1,000s so a count of 10 = 10,000, meaning the normal range is 150,000 – 400,000.

Seeing spots

Somewhere in the midst of this cold I was hit with chills and pains. My whole body ached. My head was pounding. And I had an 11-year-old foster daughter to take care of so I couldn’t do what I’d normally do, which is to go to bed and stay there.

But I couldn’t function with the pain so I took an extra-strength Tylenol. In fact, I took an extra-strength Tylenol a couple of times; just one at a time, even though the dose is two. Yes; I’m a light weight. But it really did help the pain.

Of course, what I feared might happen happened: The dreaded petechiae.

You see, I have an annoying little ‘blood disease’* called idiopathic thrombocytopenic purpura. Which basically means that my body is on self-destruct mode on two levels: 1) My bone marrow doesn’t adequately produce platelets and 2) my immune system thinks that platelets are evil and kills them. (Yay! It’s like my own internal civil war!)

When I’m sick, my immune system goes into overdrive and my platelet counts generally drop even lower than they normally are. But the petechiae don’t show up until my counts are ‘really’ low.

And guess what? Some medications—yes, even ones as ‘harmless’ as Tylenol—can lower platelet counts.** But I took the risk the other day because I couldn’t function without it.

When I went to bed last night there were two or three little guys on my right leg. When I woke up this morning there were dozens and dozens and dozens of them on both legs. Thankfully, as I write this post there are only a handful of ‘new guys’ since this morning.

And so, I guess I need to go have my blood work done first thing tomorrow morning. And I guess that I won’t be running full-speed at the Freeze Your Fanny race in a week and a half’s time. (Not that I would have with my poorly coccyx anyhow.) And I guess that I have now shared more about my medical maladies than you may care to know. But now you know. Sorry about that.

Oh! And it seems that today is now the day that I am knocking into coffee tables and doorways. I have watched three small bruises form on my lower extremities today due to my clumsiness (aided, of course, by the low platelet count). I think I’ll just stay put here on the couch until bed time now.

But on the happy side: I returned to work today. I’m not completely over the cold (or the cough!) but I was pleased to feel well enough to make it to the office—even if I did leave two hours early because I was so tired. Yay! for back to work though. Right?

* I used quotations here because whilst it is classified as a disease, I actually hate to call it that because saying you have a blood disease freaks people out.
** DON’T PANIC! Whilst there are dozens and dozens of things that can cause a depletion of platelets, if you have a normal platelet count you will not be adversely affected by a small drop in the numbers.