Cathy Bamptom is a young girl in her early 20’s who suffers from Immunopathicthrombocytepinapurpura (ITP) and Borderline Personality Disorder (BPD) and is speaking out to raise awareness for the two disorders.
I would like to introduce a new series for CraZee Advocacy known as Spoonie Sessions. Spoonie Sessions will be featuring people who suffer from chronic pain and disorders that create a disadvantage for the people who deal with the disorder on a daily basis.
“If you know what a “spoonie” is, then odds are you may be one yourself. A spoonie can refer to any individual who suffers from a chronic illness. The term originated from a post written by Christine Miserandino entitled The Spoon Theory.” – Huffington Post
How many people have chronic pain?
I was in 11th grade when I had my first ever blood test. That’s right, I had never gotten my blood taken until I was 16 years old.
At first, I downright refused because I had never had it done before and I didn’t like needles to begin with, but with a little bribery I got my blood taken and the results were not what we expected. The next day I got a call from my doctor who said that I needed to make an appointment to see him ASAP because he had my blood test results back. So, I made an appointment and when I got there he asked, “Do you normally bruise easily or get a lot of big or dark bruises?” At first, I didn’t know how to respond because I never really thought about a lot of my bruises. Of course, when I was young I was always covered in bruises, but, we thought it was because I was a kid that liked to play outside. When my doctor started to explain that my blood work wasn’t normal and he wanted to refer me to Sick Kids Hospital I became very scared.
My blood test showed that my platelets were only at 79 thousand. He later explained the normal range for platelets should be between 150 thousand and 450 thousand. At this point I didn’t even know what platelets were, but then my doctor explained that platelets are a clotting factor in your blood and if you don’t have enough of them then you have a much higher chance of bruising, bleeding and will have a harder time stopping a cut from bleeding than someone with the proper amount of platelets.
Since he wanted to keep an eye on my counts he sent me for another blood test. Again, my platelets came back much lower than normal but a little higher than the first time at 83 thousand. This is when my doctor started to think I have a blood disorder, so off the referral went to Sick Kids and off I went to another blood test. Until I was able to see a specialist (haematologist) he watched my counts closely by sending me for blood tests…lots of blood tests. It got to the point that I was getting my blood taken every week, sometimes even twice a week, and the bruises I was left with from just a simple CBC (complete blood count) blood draw were insane!
They were big and dark and eventually turned all different colours, which made me self-conscious about wearing a t-shirt. To help with that some of my classmates would try to make me feel better about myself by finding shapes and designs on my bruises, and would outline them in pen to make the shape easier to see. At one point I had a bruise that was shaped like a carrot that had just been pulled from the ground, it was about the 3 inches long and 1.5-2 inches wide!
It was months before we heard back from Sick Kids, and because it took them so long to respond to the referral they said that they needed new counts. Again it took a few months to hear back and at this point I was probably about seventeen and a half, meaning by the time I would be seeing someone at Sick Kids I would be 18 and I would be too old for their programs specialists. This is when things starting getting even tougher, I was still getting weekly blood draws and continued having low counts and now I was at an age where I was too old to see a paediatric haematologist and just a few months too young to see an adult haematologist. My doctor started sending out referrals to several different haematologists to see if anyone would take me on as a patient. It took a couple weeks, but finally someone did, but, sadly that didn’t mean I would have an appointment with them soon, it meant that I now had a specialist that took me on as a patient and was put on their waiting list. What a drag! Due to how often I was getting my blood taken, my classmates and I started to joke around about platelets and would ask where they were going or if I “had platelets.”
Until later on I didn’t realize how little I knew about my condition, so I did some research. The name of my blood disorder is called Immunopathicthrombocytepinapur
1. The body just doesn’t make enough platelets
2) The body does make enough platelets but also creates antibodies that attack the platelets and destroy them making for a low count.
When you are sick your platelets can be lowered. I can’t recall when it was but at one point my platelets got as low as 53 thousand and my doctor started to sound serious and a little worried. When I got to his office he sat me down and started to explain the risks of my platelets getting that low and told me about blood transfusions which were incredibly scary. He said that they don’t generally give transfusions until counts are around 20-30 thousand, but because my counts were so close to that he felt the need to inform me of what could potentially happen in the future.
Now that I finally had a date to see a haematologist, I got really nervous because the Hematology and Oncology clinic were at the same part of the hospital. I thought this meant I could have cancer but luckily I was wrong. The people at the clinic were so nice and extremely helpful. They showed me where to sign in when I got there and where to go from there. Fast forward a few years, I am still seeing the same haematologist and I still have low counts, but I am not having weekly blood draws for my ITP. I only have to see my haematologist every 3 months; although he did warn me about the risks and let me know when I need to go to the emergency department to get my counts checked. The main red flags were
- large bruises that are bigger than the palm of my hand on the ‘trunk’ of my body
- cuts that don’t stop bleeding after 10 minutes or if I need stitches
- If I hit my head hard in case that causes a brain bleed.
I may not heal as quickly as most people and get crazy bruises from needles and IVs, but as of now, my platelets have been higher than ever at around 126 thousand.
Spoonies who feel depressed
Spoonies who feel hopeless