Spoonie Spotlight: Heather

Spoonie Spotlight is my way to use my platform to share the stories of others living with arthritis or an arthritis-related condition. The point is to share the realities of living with arthritis and to make others’ voices heard. (New posts every 2 weeks, but I screwed up this month and haven’t posted in longer.) If you would like to participate, fill out the form!

What’s your diagnosis?

Ankylosing Spondylitis, LGL Leukemia, Adult Onset Cyclic Neutropenia

When were you diagnosed?

The cyclic Neutropenia in 2008, the LGL Leukemia in July of ’13, and the ankylosing spondylitis in June of 2015

How long have you had symptoms?

Since I was a teenager – I started having reoccurring infections and joint pains at that point. 🙂

Have you been limited in any way from your illness? If so, how?

I think “limited” might be a bit selective no? But yes, to some extent I’ve had to learn to cope with my illnesses. I’ve learned to walk on with crutches to manage my back and hip pain, I’ve had to call off plans on days I’m not managing well which can be a major bummer, I’ve had to learn to take meds on a timely manner, etc.

What’s your story?

I was in the hospital for an enlarged spleen when I was 18. They thought I was being a hypochondriac or had mono. I returned 3 days latter and my white blood cell count had plummeted. After months of testing I was diagnosed with Adult Onset Cyclic Neutropenia which meant that every month my body would go into overdrive and kill off otherwise healthy cells. As time wore on, I kept getting sicker and sicker and after my hematologist/oncologist suggested a bone marrow biopsy to see why my platelets were dropping off, I found out I had a rare and incurable Leukemia that is known as Large Granular Lymphocytic Leukemia. I ended up on chemo for 8 months and so far, I’ve been doing good! However, LGL Leukemia has a high co-morbidity with RA so when I found out the symptoms of AS, I asked my doctor to check into it for me and sure enough I had it! Although after a hip surgery and spine issues it wasn’t really a big shock. 😉

How has your illness changed your life?

I speak up for myself better now, I’m an admistrator for the largest support group for LGL Leukemia that also has a nonprofit that funds research efforts. I feel much stronger and more approachable, plus I’ve become a really good person people can come to and talk to about issues they don’t feel comfortable telling others which is pretty neat!

What are your goals for the future? (Not related to your health)

Finish school – I had to quit my Comp Sci program when I started getting really sick. Keep being a great partner for my girlfriend of 6 years and always be there to support her, encourage her, and love on her. Read more, draw more, and be an awesome owner for my dog and gecko when they need me!

What are your goals for the future? (Health related)

Be approved for social security disability. Right now this is my biggest hurdle as I’m really dependent on others for financial support at present. I have a great attorney though and she thinks it’s my age that really is putting things from moving forward. I want to get better at being an advocate for myself with my doctors, and I also would like to go into remission at some point for all of my illnesses; a girl can dream right? 🙂

Do you consider yourself handicapped or disabled? Why or why not?

I would definitely consider myself disabled in the broadest of terms – I have a handicap placard and need to use crutches on bad days however I can feed myself on my own, I can walk with assistance, I can bathe myself, and I can breathe on my own. Every day is a blessing and while I may be different, I am very thankful for what I have that is disabling.

What would you like readers to take from your experience?

I think its really important that people not get in a slump when they’re diagnosed. Its natural to grieve of course but your illnesses needn’t define you – they’re simply a part of you to help you grow and overcome and you will do both of those things! I also hope that people can realize what being a good self advocate can do for yourself too!