Q&A – Your questions about ITP

I’m definitely not an expert on ITP or autoimmune diseases in any way. I can’t answer all the questions, especially since I still have so many myself. The Platelet Disorder Support Association does a tremendously good job answering frequently asked questions on their Web site. So if you’re feeling curious, head on over and check it out.

On the other hand, I can probably speak semi-expertly on my own situation. I’ve had a lot of the same questions, especially after starting a new job and trying to keep myself safe from infection.

So, here are some of the questions I’ve heard recently:

  1. Why are you avoiding hand shakes and door handles?
    I laugh a little about this. I have always been a bit of a germaphobe, but now it’s actually necessary. I’m trying to lower my chances of getting another infection. The longer I battle infection, the longer any treatment takes. With prednisone, infections seem to reset the clock. I need to be healthy (infection-free) for the prednisone to work properly and the blood work to reflect the treatment’s effectiveness. Infection complicates treatments for autoimmune issues  because most treatments involve suppressing the immune system, which fights infection. And the immune system can’t fight if it’s asleep.
  2. How did you get ITP? Does it run in your family?
    From what I understand, ITP is not genetic. Anyone could develop ITP because doctors believe it begins with an immune response that results in confusion. It’s difficult to know for sure what causes each case of ITP, but I believe mine began with a severe viral infection. Somewhere in the battle, the wires of the immune system got crossed and the system started attacking its own allies. I have never felt the same since recovering from that infection, which was fairly severe.
    That being said, I do have a distant cousin who also has ITP. He has had it for several years and never reached remission. His platelet counts, unlike mine, seem to hold steady at a certain number while my counts ride a roller coaster. So it’s not impossible for family members to also have ITP, but it’s not something connected to your genes.
  3. What made your doctor decide to treat you? Was it getting worse?
    No, there was no breaking point for me. We discovered my condition by accident. We tested my blood weekly for probably 12 weeks before determining that my lowest platelet counts were borderline dangerous. My doctor suggested we begin treatment instead of crossing our fingers and hoping my counts don’t drop any lower. Treating right now is giving me a better chance of remission without all the drastic measures of hospitalization. While I am healthy and young, I can handle the treatments better, reach a point of remission, and hope that ITP will not be a lifelong battle. At this time, we are going on six months of treatment without much success, but that doesn’t mean these treatments will never work. In the meantime, they are doing what they were meant to do, and that is to relieve symptoms if only temporarily.
  4. What kind of treatments are available for you?
    There are a few treatment options ranging from corticosteroids to immunoglobulin infusions (IVIG) to chemotherapy. There are some drug options in there, too. From what I’ve read, they are expensive and relatively new. We tried corticosteroids and determined they are not a good long-term treatment option for me. I have had three sessions of IVIG, but I do not think IVIG will ultimately achieve remission. My doctor recently discussion the chemotherapy option with me, but he says it’s in the back of his mind (even if it’s in the front of mine).
  5. How do you feel? Before and now?
    I slept a lot before starting treatment. I sleep much more normally now, around 7-8 hours a day but now with the help of Benadryl. Before, I would sleep 7-8 hours a night plus a 1-2 hour nap in the afternoon or evening. I was intimidated by road trips, travel, long events, even the grocery store. I was just so tired. I am still pretty tired, but I don’t feel the need to nap when I get home from work. It’s nice to know now why I was exhausted. I used to do P90X and immediately go to bed afterward. The fatigue was crushing. I also had some pretty significant tenderness in my side (from the spleen, I suspect), which has been mostly relieved by the prednisone.
    Piece of advice on this one: don’t tell chronically ill people you hope they’ll feel better soon. This is a long battle–one that will last the rest of our lives. This comment just creates an awkward moment where I want to re-educate my friend on what it means to have a chronic illness. This isn’t the flu–it won’t go away.

Do you have another question? Let me know and I’ll try to shed light on it from my ITP experience.

Happy ITP Awareness Week!

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Health Update – And ITP Awareness Month

Awareness campaigns make me uncomfortable. Usually I am on the receiving end, but now I’m in the middle. They make me, the subject of the awareness, feel like a door-to-door salesman for my own illness.

Please wear my t-shirt. Buy my bracelet. Share my Facebook post. Join my group. Tell all your friends that I’m chronically ill and what it means!

Awkward…

Last week, I had blood work (as I do every week) and met with the hematologist afterward. I had a drop from last week–almost 30. (When we say 30, we mean 30,000 k/uL, which is thousands per cubic milliliter.) Although I’m well out of normal range, the doctor is happy. I think he’s changing his view of my ITP case, which is that my normal may never be a healthy person’s normal.

So the new plan for the next 30 days: pausing treatment. I will continue on prednisone. In my opinion, it’s only preventing the counts from dropping as quickly. So we’ll monitor how low my counts get in the next five weeks. In the meantime, I’ll probably sleep a lot. Which is unfortunate. I have a lot to do in October.

I’m documenting this struggle to help others understand what is usually an invisible illness. In my own way, I’m bringing awareness to ITP. But I don’t want you to buy a t-shirt, a bracelet, share my Facebook post or join my group. I’m not trying to sell you sadness or pity. But maybe someone reading this is considering a career in research. Maybe they want to be a doctor or a nurse or influence the way our government views and handles invisible illness. Maybe you’ll just learn a little more about ITP, and the next time you see a bruise, you’ll think about it differently. That’s enough for me.

I’ve asked my coworkers to wear purple tomorrow–enough purple that people in our building ask questions, and then those questions (I hope) are answered with my ITP story. If nothing else, maybe someone will know how to save a life one day.

So tomorrow, wear a ton of purple, and tell people it’s for Idiopathic Thrombocytopenic Purpura (ITP), an autoimmune blood disorder that causes low platelets. And if you have to explain what platelets are, well, tell them to visit www.PDSA.org.

 

Hey, health insurance workers, I forgive you

I have waited too long to write. I’m sorry. My head is filled with thoughts to share with you, but every draft I write doesn’t feel right to post.

Today was challenging for me. It reminded me again how difficult and necessary patience is, and not just for chronically ill people. Everyone has a struggle, though it might not be like mine.

(Well, if you must know, I have many struggles. ITP was just the cherry on top.)

I spent entirely too much time on the phone with my health insurance company today. I hate all forms of insurance. I am leery of anyone who works in insurance. I do not tolerate lies. I am a human lie detector. I can tell when something is off, when people are evading the truth or not telling the entire story. I know what candor sounds like, and insurance industry workers do not strike me as masters of truth-telling. In fact, I believe they might be good journalists. They should consider a career change.

I should back up and say I have a deep-seated distrust of anyone who sells something. Which is ironic since I work in marketing; however, I have a unique approach to my work, one that I’m proud to say demonstrates integrity and candor. But that’s another story.

What I want to say to you–you sales people and insurance representatives–is thank you. And I forgive you. You helped me learn to speak with kindness and clarity and patience. You helped me develop boundaries. You taught me to be cautious. And if I’m talking to you, I hope you can go home to your family and friends with a clear conscience, and sleep well knowing you’ve done your best to help someone navigate an industry seemingly saturated with corruption and deceit. I hope you are choosing a course of kindness and compassion, especially if you are talking to people like me who are ill, worn out, and ready to give up.

And if you’re not, well, it’s not too late.

The Last Duck

graduation jar

On Sunday, Jordan and I were asked to serve communion at church last minute when they were short on volunteers. We’ve never served communion. I don’t think they knew that when they asked. But we’ve watched it enough to know what approximately to do.

About halfway through dozens and dozens of the-blood-of-Christ-shed-for-you’s, I realized I was serving the blood, or the juice that represented the blood. And the blood was back as fast as it arrived on Ash Wednesday and Good Friday, when the blood was the only answer to my ailment. I was sharing with others that which saved me, just like I’m doing here.

I’m not really sure how it all ties together yet, only to say that my blood has been insufficient. His blood has been enough.

On a lighter note, we’ve been planning a celebratory vacation to a warm, tropical venue. We’re going to mark some items off of our bucket lists. I am laughingly calling this vacation the Rachel’s Make A Wish trip. We were planning this to celebrate my graduation from grad school, but we have so much more to celebrate. It’s about moving forward when I could have dismissed or abandoned treatment altogether. It’s about celebrating the people who shared the difficulties of the last six months with me. So I’m going to go, even though traveling now makes me a little nervous, and I’m going to try some new things, eat good food, read books on the beach, and cover myself in 70 SPF sunblock to counter the Prednisone.

Also, I remembered I still had one duck to put in the graduation jar. I did that tonight. All ten ducks in the jar. Eight weeks of work for each duck. Sounds so silly, but it is finished.

When the doctor says, “I have good news.”

Today I had a follow-up appointment from my IVIG infusion treatments. I had been emotionally working myself up to this appointment because I figured we’d talk about Rituxan infusions, which is the chemo option I mentioned in a previous post.

Some more blood work, some more waiting. And then my favorite hematologist walked in, smiling, and he said, “I have good news.”

“Oh, really?” I said. “You never have good news.”

I was skeptical and not shy about it. I waited while he looked through my chart.

“I believe we might be looking at remission here,” he finally said. Not what I was expecting him to say. Today my lab results showed my platelet counts have been in the same general range for the past three draws. This is not how my immune system responded to the first two attempts at IVIG. The first two infusions sent my numbers skyrocketing only to plummet quickly a couple weeks later.

Remission, unfortunately, can’t be determined by a test. It can only be determined by more waiting. So we wait again. But it’s a good wait.

The only downfall is it sounds like I’ll be on prednisone for a long, long time either way.

Personally, I think the optimism comes too soon. I’d like to see a couple more weeks at these numbers. The difficult part of this process is not having a good baseline. What I mean is I’m a rare ITP patient. I was mostly asymptomatic when I was diagnosed. Most ITP patients are diagnosed as a result of dangerously low platelets, bruising, and bleeding. I was diagnosed by accident.

Basically, we can’t compare my progress to other patients. I’m an unusual ITP fighter.

Ironically, I just ordered a more permanent medical ID bracelet. And this preliminary news comes just in time for September, which is ITP Awareness Month. (Wear purple for platelets!) So hopefully I can share more than awareness next month if my immune system holds up.

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Why I Won’t Take Your Advice

I have written or spoken this monologue so many times over the past six months (yes, it’s been six months):

Thank you for thinking of me. I know you mean well, but I’m really not interested in trying [a new doctor, an herbal supplement, natural remedies, a cure-all beverage, etc.]. My doctor and I have a plan. We’re a team. Maybe someday I will explore your suggestion, but for now, this is what we’re doing.

I believe I know what’s happening and why I’m being bombarded with unsolicited advice. People are interpreting my discouragement with recent results as a white flag for the treatment plan altogether. That is not the case.

It’s difficult to explain this kind of exhaustion until you’re embedded in it, whether it’s ITP or some other chronic illness. Driving to the doctor every week, encountering needles every week, waiting for the results every week. Prednisone every day. Feeling fat, overheated, sweaty, agitated. Tired but unable to sleep. Sensitive stomach. Daily headaches. Hourly trips to the restroom. Clothes that don’t fit anymore.

I hate to list out the things that encumber my day, because so many people deal with so much worse. I am cared for and loved well. I am in the presence of gracious, understanding family, friends, and coworkers.

But some days, I just want a break. That doesn’t mean I want to quit. It just means I want to sleep through the night without Benadryl. I want to stand up without breaking into a sweat. I want to stop involuntarily donating blood to the cancer center. I’m not giving up. I just need a change in the routine for the better. So let me answer your question.

Why won’t I take your advice?

Rather, why do I abstain from the alternatives?

  1. A second opinion. I don’t need one right now. More voices means more options, more opinions, and more decisions to be made. The goal is to keep stress low so platelets can be high. My life is not in danger or on a deadline at the moment. I trust and like my current physician. I consider myself fortunate to have a skilled specialist so close to home. Additionally, most physicians probably wouldn’t treat me since my platelets are not quite in the “danger zone.”
  2. Herbal supplements or non-prescription drug solutions. I’m not saying they don’t work. There are a few that have helped ITP patients. And prescription drugs are refined from these early solutions to health problems. So they certainly do work, but what will they do to my blood? If we introduce a new “treatment” for ITP to the current one, we don’t know how they’ll interact, and if my platelet counts are affected, we won’t be able to know what worked–the supplement or the prescription treatment. Also, a lot of unstudied, scary “natural” remedies are floating around out there right now. My doctor would be pretty upset if I undid six months worth of work with some shady supplement I heard about in an online forum.
  3. Slim-plex-nutri-advo-Jenny-diet cure-all shake powder. Listen. I’ll say what I said to the salespeople. If you are struggling with a chronic illness, you already know there is no magic cure. If there was, it wouldn’t be called chronic. In a moment of desperation or discouragement, don’t spend hundreds of dollars on an as-seen-on-Facebook magic elixir. You will only feel worse later when you realize you could have paid off three months of lab bills with that money. Some people are genuinely trying to be helpful, but some are trying to take advantage of fatigued, discouraged chronically ill people like me. Shame on you. That’s all I want to say on that topic.

So, am I ignoring your advice? No. I’m in a support group for ITP patients. You can’t tell me about a treatment I haven’t already researched, witnessed, or experienced. I think I can speak for most patients with chronic illness when I say this: Thank you. We know you mean well, but you don’t always speak well. I’m guilty of it, too. When you don’t know what to say or how to talk to a sick person, sometimes it just comes out as word vomit. You feel like you have to offer something in order to be helpful.

We’ve had plenty of time to learn to be patient and gracious. Don’t worry. There’s some left over for your word vomit.

Finally a Master of Science in Communication

I stood outside the music hall after graduation for a good five minutes hoping if I stood still long enough, my guests might find me. We were a sea of black gowns, and the only thing identifying me from the other students was a “citron” hood that was as itchy as it was hot. August is not a pleasant month to graduate, but it is always pleasant to have graduated when it is said and done.

I don’t know why, but there’s this song I’ve loved for many years. It plays in my head like a soundtrack at the most opportune moments and seems to apply to every kind of situation I find myself in. It started playing again after the graduation ceremony, when I had a few minutes of reflection unexpectedly available to me.

Here we are
Here we are
Here we are
We’re still here

And what a beautiful mess this is
It’s like taking a guess when the only answer is yes
And through timeless words and priceless pictures
We’ll fly like birds not of this earth
And tides they turn and hearts disfigure but that’s no concern
When we’re wounded together

And we tore our dresses and stained our shirts
But it’s nice today
Oh, the wait was so worth it
(Jason Mraz, “A Beautiful Mess”)

The gentleman who prayed at the ceremony asked us to reflect on who has loved us well during this journey, who helped carry us here. And I started to cry from my seat, even though I was sure I wouldn’t.

I looked back through the pictures (okay, selfies) I took during the processional. The torture hood for Master’s graduates swallowed my neck and really emphasized my prednisone moon face. I thought the puffiness was going away, but these pictures were proving me wrong. They were downright horrifying. So I was hot, itchy, and now mortified at what other people were seeing as they met me for the first time.

Purdue graduation 2016
But to be honest, the moon face–it’s a badge of honor. I mean, 8 out of 20 months in this program, I have been dealing with the ITP diagnosis. So, I’ll look back on it and remember how challenging and good it was. And I’ll be continue to be grateful.

In my moment of reflection, the Jason Mraz song played. Here we are, I heard, and first I thought, Here I am, waiting for all seven of my guests to somehow find little me in this huge crowd. But that seemed selfish and impatient as the rest of the song played in my head.

A generous gathering of people who love me have followed me here to this moment. I entered this journey not knowing the changes and hurt we’d endure. I want to say the journey didn’t change me, but my goal was to exit the stage a better me.

If I have gained you or lost you on this journey, I’m sorry. Sorry to you who have joined me for a certainly difficult road ahead. Sorry to have lost some of you. I did change, but I don’t want to go back.

And if you were here for both the beginning and the end, I see you. I appreciate you.

In January 2015, I had no idea I’d be changing jobs or hearing a life-changing diagnosis or burying family members. I didn’t know I’d start blogging again. I didn’t know the Tuesday after graduation I’d be sitting at the cancer center receiving more infusions. I didn’t know I could be as grateful for one day as I was at graduation.

But here we are, here we are. Oh, the wait was so worth it.