My friend Melanie has Immune thrombocytopenic purpura (ITP). I wanted to learn more about it so I decided I would do some research on the internet and also and interview with Mel. I hope you learn something from this too.
I found this information on the internet:
Immune thrombocytopenic purpura (ITP) is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. People with the disease have too few platelets in the blood.
ITP occurs when certain immune system cells produce antibodies against platelets. Platelets help your blood clot by clumping together to plug small holes in damaged blood vessels.
The antibodies attach to the platelets. The body destroys the platelets that carry the antibodies.
In children, the disease sometimes follows a viral infection. In adults, it is more often a long-term (chronic) disease and can occur after a viral infection, with use of certain drugs, during pregnancy, or as part of an immune disorder.
ITP affects women more often than men. It is more common in children than adults. In children, the disease affects boys and girls equally.
Here is my interview with Mel:
Kelsey: What was your first sign of getting a blood issue and what is it called?
Mel: I was diagnosed with Hashimotos Thyroiditis on my 20th birthday. My immune system had made my thyroid essentially non-functioning. I had significant bleeding, and more blood work found that my platelets were dangerously low. After unsuccessful blood/platelet transfusions and antibody infusions, I was also diagnosed with ITP – Immune Thrombocytopenia Purpura.
Kelsey: Where were you when it happened?
Mel: When I was first diagnosed I was living in Camrose with my sister in my third year of University at Augustana. When I relapsed a few years later, I was living at a L’Arche community in Edmonton. I resigned from that job so that I could move home for treatment. I spent time in St. Mary’s Hospital and the University of Alberta Hospital. Then a quick stint at the Mazankowski Heart Institute.
Kelsey: What was your family’s reaction when you were in the hospital?
Mel: My family was pretty worried for me, my Dad especially. I’ll never forget him crying to my hematologist, begging him to fix me. Now that I am a parent, I can understand the agony of wanting desperately to take your child’s place, and how helpless that feeling is. My family was incredibly supportive and I am indebted to their concern for my well-being – then and now.
Kelsey: If someone was going into the same problems what would you say, do you have any tips to give them?
Mel: I would say take things one day at a time. Medical conditions can be a lot of trial and error, and surprisingly a lot of “best guesses.” You’re not always going to get the quick answers you want and it can be incredibly frustrating. It may require more patience and acceptance of some unknowns.
Try and stay as connected with your body as you can. I had a lot of “talks” with my body that helped me to process what was going on and kept me communicating with myself – this was usually done on a long walk or in the bath.
Kelsey: What’s something positive about having your blood issues?
Mel: ITP taught me that it’s okay to be scared, but to never let your fear be bigger than your faith. Instead of my faith feeling tested, I felt it stretch and deepen as I spent more time in prayer and understood the value of telling others that you are holding them in prayer. I’ve never felt more held and supported by something so much bigger than I could ever comprehend.
Kelsey: What would you do if you got this again, what would you do differently?
Mel: I would have kept a log or journal. At the time I thoughtI would remember everything, but our memories can be fickle historians.
If my ITP relapses I think I’m kind of screwed because taking my spleen out was a last ditch effort, so we just won’t consider that one haha.
Kelsey: What was the hardest things to give up when you got sick?
Mel: Because I had low platelets, I was at high risk of spontaneous internal and external bleeding. I was told not to floss or shave my legs so my hygiene took a bit of downturn. But the hardest thing to give up was sense of control. I had to change a lot of plans, and then put plans on hold. Sort of like a pandemic.
Kelsey: What’s is the hardest thing to go through with a blood sickness?
Mel: The hardest thing was the unknown. I remember having trouble falling asleep one night because I wasn’t sure I was going to wake up the next day. I also always had the taste of blood in my mouth when my platelets were low due to blood blisters lining my mucous membranes, and that was not pleasant. To this day I can’t stand the taste of blood.
Kelsey: What’s makes you a better person because of your blood sickness?
Mel: I have an appreciation for what it’s like being a patient and how difficult it can be to navigate our health care system. I was young with all of my faculties, and yet still had to strongly advocate for myself at times. It also gave me perspective, and a shift to what really matters in life.
Kelsey: Do people see you differently today than you were before?
Mel: I’m not sure. I remember at the time, people would ask me how I was doing, when really I think they just wanted to make sure I would be “okay” and that’s it, especially when you don’t know what information people were given.
Kelsey: Where’s your favourite place in the world? Where have you travelled?
Mel: Honestly my favourite place in the world is at home. I’m very much a homebody, but I’ve traveled to Italy, Greece, and Mexico, and a few places in the USA. Not having a spleen anymore limits where I can travel to, but my next destination of choice would be New York City.
Kelsey: How was growing up and going to school?
Mel: I grew up on a farm outside of Camrose with my parents, sister and brother (Kelsey’s true love). I did ballet for many years and was active in our church. I went to Sifton School until Grade 9 when I started going to CCHS. I really enjoyed school and liked getting involved in various extra-curricular activities and leadership opportunities.
Kelsey: Did you make friends easy?
Mel: I did make friends relatively easy. I like to make people laugh and feel comfortable.
Kelsey: How do you like being a RN?
Mel: I love being an RN. My ITP journey showed me that a good nurse and a bad nurse can really stick with you, and I wanted to be a positive part of other peoples journeys.
Some days I’ll come home from work exhausted and smelly, but also with a validating assurance that everything that I’ve been through has led me to where I am now.
Kelsey: What is it like living in Edmonton?
Mel: I like living in Edmonton – Mur and I moved here for school and now both work in the city. I could do without the traffic but I also really like living near a Costco.
Kelsey: Where did you meet Murray and tell me about your friendship?
Mel: Murray and I met in high school. I admired the back of his head in Biology lab and it wasn’t until Grade 12 that we spent more time together filming a movie for Drama class. It’s a painfully awkward film, but fun to see how we’ve changed since then. I’m more in love (and friendship) with him than ever before.
Kelsey: Do you think having twins would be different because you got sick?
Mel: Likely only insofar as it gave me a deep gratitude for this life, and having twins gave this life quite a new sparkle– one that I am tremendously grateful for.
Kelsey: What’s it like being a parent with twins?
Mel: Being a parent of twins is pretty cool! You get a lot of attention when you’re out in public. The general population finds twins fascinating, so I’m happy to answer questions and hear about a stranger’s-cousin’s-neighbor’s-dog sitter who also has twins. It’s also really hard because it’s a lot of extra work and you may require more support.
Kelsey: What’s the hardest thing to raise twins?
Mel: For me, the hardest thing about raising twins is the feeling that we have one shot to “get it right”. You’re going through developmental stages at the same time, where as with singletons you’ve learned things from your first child that you can bring to your second, and so on. It’s a strange pressure that I try to give myself some grace with.
Kelsey: What’s the best thing to raise twins?
Mel: The best thing about twins is watching their relationship grow and evolve. I love that they will always have each other and share a special bond. While they have their own personalities and certainly squabble, they look after each other and are each other’s best friends.
Kelsey: What did you say when you found out that you were having twins?
Mel: When I found out we were having twins, my first reaction was that I didn’t know how to raise twins – would I raise them as individuals, or honour their special relationship as twins? I like to remind expectant twin parents that twins are siblings born at the same time, and to try their best to not always compare one against the other.
Kelsey: Do you teach a class on raising twins, what are your tips?
Mel: Yes! I’m the Program Director for the Edmonton Twin & Triplet Club. Part of my role is facilitating the Managing Multiples classes. One of my biggest tips is to get involved in the twin community and to make connections with other families with twins. It’s such a unique experience and only people who have twins truly know what it’s like.
Thank you Mel for taking the time to help me educate all of my blog followers! I hope you stay healthy!
Do you have any other ideas of blogs I should do? I would love to hear from you!