30 Things to Do While I’m 30

Some people do a “30 things to do before I turn 30” list, well, I’m a little late for that since I’ll be 30 in a month.  When I was 15, I did make a goal to visit all of the continents before I was 30.  I made it to 5 out of the 7 before my chronic illnesses prevented me from international travel.  While I still dream of visiting the final two (Antartica and Africa), it won’t be anytime soon.  Instead, I decided to make a list of 30 things to do while I’m 30.

1. Make a website about cavy genetics. ✓
2. Hang portraits of my pets (past and present) in my hallway.
3. Read the rest of the Harry Potter series.
4. Learn basic conversational French.
5. Bake an apple pie and crust from scratch.
6. Take a picture every week and crop/edit it to learn new skills. ✓
7. “Pay it forward” to someone else. ✓
8. Earn a title on one of my dogs. ✓
9. Crochet a dinosaur.
10. Blow bubbles when it is below freezing outside.
11. Make a planner/organizer.
12. Visit a museum I’ve never been to before.
13. Find 30 geocaches.
14. Release a new travel bug for my birthday. ✓
15. Finish a jigsaw puzzle (500+ pieces) by myself.
16. Become a volunteer at the Humane Society. ✓
17. Make paw print impressions of my pets.
18. Rewatch all of the House episodes. ✓
19. Wear pajamas for a whole day. ✓
20. Try a new food each week. ✓
21. Put my books on shelves in Dewey Decimal order.
22. Visit an Antartica exhibit at the zoo.
23. Visit an Africa exhibit at the zoo.
24. Fly a kite.
25. Blog once a month. ✓
26. Try to grow Brussel sprouts. ✓
27. Plant a tree. ✓
28. Grow a vegetable that is a “funny color” (purple broccoli, white carrots, etc.).
29. Write a letter to my 40-year-old self.
30. Make a list of Things to do Before I Turn 40 (and do them before I turn 40, not after).

I’m Not Your Inspiration

The posts are all over the internet, giving people warm, fuzzy feelings.  A grocery employee squishes a loaf of bread and the patron writes a letter to the grocery, but she isn’t angry, she praises the grocery for hiring an Autistic employee.  A man buys a cake and asks for something written on it, but when an Autistic employee writes on it in spite of not being supposed to, he shares the story with the world.  A disabled man wets himself, but a non-disabled person comes to the rescue, escorting him to the restroom and calling for clean clothes.  I could give hundreds of examples that circulate daily.  But I won’t like a single one because I hate them.

A friend recently shared the story about the lady in the grocery with squished bread.  The employee counted her change multiple times, squished her bread, and she went home and wrote a letter to the grocery praising them for hiring an Autistic employee.  I won’t like it because I don’t want to give them traffic.  But I do want to discuss it and posts like it.

What is wrong with it? First of all, the lady assumed the guy had Autism. She didn’t know, he could have been having a bad day, he could like numbers, he could have anxiety, he could have Tourette’s or a stutter or OCD. Maybe he is bad at math or it was his first day at work or he miscounted his drawer yesterday and was nervous?  Maybe he justed liked squishing bread or was bad at bagging.  I mean repeating stuff and squishing bread isn’t exactly in the DSM 5.

Now, that part aside, let’s look at what makes this story worth sharing. Is it because someone with Autism did something awesome? Because it is spreading awareness or acceptance about Autism? Because it is helping others understand what it is like to live with Autism? Nope, none of those things. It is literally shared because it makes “normal” (ie. non-autistic or non-disabled) people feel warm and fuzzy inside because they aren’t Autistic.

Let’s replace the guy in the story with a non-disabled person. Suddenly, the story is uninteresting, isn’t it? It’s pretty boring when it is about a normal person writing about a normal person who counted some stuff twice and squished some bread. It is only when a normal person acts like a decent person should to a disabled person that non-disabled people get all squishy inside and feel the need to share the story.

Imagine you were the cashier – would you want this story shared about you? What if it were your child? Your parent or sibling? We might be Autistic, but we are people. We have lives and feelings and emotions and believe it or not, we don’t exist solely for your inspiration.

This type of story is known in the disability community as “inspiration porn.” They are at best pointless and at worst ableist and objectifies the disabled. The sharing of this type of story needs to stop.  A good way to draw the line is to replace the disabled person in the story with a non-disabled person.  Does the story suddenly become really boring?  Then don’t share it.  That story about the grocery store is a great example of this.  On the other hand, the story I just read about the four Paralympians who ran faster than the Olympians at Rio in the 1500m?  That is pretty darn cool disability or no!

Five Years

This is a picture of me, five years ago.  Five years ago, I had a surgery on my arm that was supposed to stop the tingling from a pinched nerve and prevent nerve damage.  Five years ago, that surgery damaged my nerves and sent my autonomic nervous system into a tailspin.  Five years later, I’m still experiencing the pain and affects of that surgery, and they aren’t getting better, they are getting worse.

This is the first year that I actually didn’t think about the fact that it was the anniversary of my pain, the day passed just like another holiday.  But now, I think about it and see how far I’ve come since I first started this blog as things were beginning.

First, I look at my post, “I Can Niko” I was living with the use of one hand at the time, and posted some of the things I couldn’t do.

“I realized the other day that I had not used my left arm normally in more than six months. I have not folded my own clothes, zipped a Ziploc bag, or clapped my hands in half of a year.  
there are so many things I can’t do and may never be able to do. I think of the brand new pair of boots in my closet that I can’t tie, the half-finished scarf on my knitting loom, or the new material I can’t quilt. I pondered of all the frustrations I have faced and will face, including toilet paper out of reach, containers I can’t open, and meat I can’t cut.  I still feel a longing for certain things I can’t do with one hand.
The thing I long to do more than anything is curl up on my left side, how I used to sleep and sleep one, long peaceful night.”
I can do all of those things and for most, I don’t even think about them.  I tie my shoes daily, forgetting the months I wore elastic shoelaces because I couldn’t tie my own.  I cut my meat at meals without thinking of how I would cry because I had to have my meat cut like a toddler.  I fold my own clothes, zip Ziplocs, reach toilet paper, and open containers easily without remembering the hard times I had.  Most nights, I sleep on my left side, though my nights still aren’t quite as peaceful as I might wish.
Oh, and those Niko boots?  Yup, I can wear them, tie them, and they’ve been on many adventures!
Going back and reading my post “1,000 Little Steps = 1 Big Step” is more than a little ironic.  After writing a few more things that I’ve accomplished, I wrote:
“Am I cured? Am I perfect? No, but I’m taking little steps toward improvement. And that is all that I ask, that I continue to head toward the goal, a little step closer each day. I need to continue without getting frustrated because I’m not growing enough and be content to grow a little step each day.”
Looking back, I can finally see the big step I’ve made!  I’ve made it 1,000 little steps for my first big step – now for 1,000 more for the next. I can’t wait to see what awaits me!

 

Rare Disease Day – All About Stickler Syndrome

General Information
  • The rare disease I live with is Stickler’s Syndrome, Type III (formerly hereditary arthro-ophthalmopathy) as a result of a mutation of the COL11A2 gene.
  • Because of a genetic flaw, my collagen strand is weaker than normal.  This affects hearing, vision, facial development, and joints.
  • Stickler Syndrome is so rare that it doesn’t even have it’s own diagnostic code, it is billed under the same code as many other rare genetic disorders or billed by symptom (sensorineural hearing loss, joint pain, etc.).
  • Aside from the geneticist who diagnosed me and the genetic ophthalmologist who saw me at Cleveland Clinic, I have never met a doctor who has heard of this condition.
  • The disorder is progressive and joint pain, vision loss, and hearing loss will progressively get worse as I get older.
  • I was diagnosed after genetic testing in the year 2012, but I had symptoms before I was born.
Symptoms
  • The first noticeable symptom was my deteriorating vision.  I was prescribed my first pair of glasses when I was 2 years old.
  • When I go to the eye doctor, I cannot see the large E that takes up the whole screen without my contacts.
  • I’m not considered legally blind because my corrective lenses can get my vision close enough to normal.  This could change any time as I am at very high risk of macular degeneration, retinal detachment, or glaucoma.
  • It is ironic because Type III of Stickler’s Syndrome is known as “non-ocular type” but I have extreme ocular (eye) involvement.
  • I have been diagnosed with mild sensorineural hearing loss, which will progressively get worse.  At this time, I don’t need hearing aids, but may need them in the future.
  • I’ve had painful joints for most of my life, when I was younger, I didn’t really know it because I’d never experienced my joints pain free.  I tended to say that I was “tired” when I really meant I was in pain.
  • Which joint is most painful varies from day to day.  I wear various braces and patches to help with pain and correct hypermobility.
Life with a Rare Disease
  • People would be surprised to know how much this diagnosis scares me.
  • The hardest thing to accept about my new reality has been the progressive nature of this disease, and the constant threat that it will be worse.
  • Most people assume that because I look normal, I’m normal.  They can’t see the pain, the hearing loss, or the vision problems, so surely it can’t be that bad.
  • Something I really miss doing since I was diagnosed is looking at something without thinking about whether I’ll ever see it the same again and wondering if I can do certain things I love if I lose my vision or hearing.
  • It amazes me how much of a difference in my life one tiny mistake in my DNA can make.
  • If I could have one day of feeling normal again I would ride horses all day and enjoy that it doesn’t cause any pain.
  • My illness has taught me to value every day – every sound, sight, and low pain day.
  • I love it when people take time to get to know me – all of me, the illness, the good, the bad, and more.
  • My favorite scripture that gets me through tough times is: “‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.'” Jeremiah 29:11
  • When someone is diagnosed I’d like to tell them that this diagnosis isn’t the end of the world. Most people get this diagnosis when their child is young and it can be scary, but I love my life and can live with Stickler’s and love life too.

Goodbye Gallbladder, Hello Trust

Remember the nausea and related problems that contributed to my medical leave of absence in February?  Turns out it wasn’t the flu, an IBS flare-up, or even another kidney stone.  As my symptoms continued and even became more severe I started seeking some answers and thus some help.  My gastroentestinologist did a few tests including an EGD which showed a slight hiatal hernia, but that didn’t explain all my symptoms, even in combination with Irritable Bowel Syndrome.
The next step was to have an abdominal ultrasound followed by an imaging study to track the function of the gallbladder.  This showed that my gallbladder was functioning well below normal in spite of the fact that I had no stones (the most common cause of gallbladder problems in my age/gender category).  I have once again proved to be unique by getting chronic acalculus cholecystitis, with typically occurs in men in their 40’s to 60’s, or patients with severe burns, in a coma, or on long-term IV nutrition – none of which apply to me!
There aren’t really any management techniques that work for this, so the only treatment option is to remove the gallbladder.  Surgery is scary to everyone, but as someone who lives with chronic pain that could potentially spread with even a minor injury, surgery is potentially life-changing.
I learned long ago that worry and fear do nothing to benefit me and only adds to stress and anxiety which causes pain flares, which turns into a vicious cycle when the increased pain seems to confirm the pain is getting worse or spreading.
A Cycle of Pain, Fear,and Anxiety

I wrote a post about this back when my foot problems began, but I have continued to recognize the importance of trusting God with my future regardless of my fears.  The only way out of this vicious cycle is to break it at one of the points so it doesn’t spiral out of control.  For me, the best place to break the cycle is when the fear first begins, before it becomes an anxiety or worry.
I recognize that my worry simply cannot help the situation; if anything, it has the potential to make things worse.  So at that point, I accept that what is going to happen is going to happen, regardless of how much or little I worry.  Then I choose to allow God to be in control, and trust His wisdom is greater than mine.  When I start to worry, I know I can relax because he is in control.

For those as curious as me – a picture of my gallbladder through the laprascope prior to removal.  There is actually no visible blood (except in bloodvessels) and isn’t really gory at all.  Click here to see!

The Effect of the Positive

I’m not the only one who is doing the April challenge to do something every day, there are others, and one got an interesting response on a post with pictures of some beautiful flowers she had photographed.  The response said simply, “looking at flowers does not stop the pain.”  The blogger had her own response, but I thought I’d respond to it as well.
So, does doing something enjoyable, like taking pictures daily, looking at photos of beautiful flowers, or anything like that really help your pain?
I honestly believe it can.  Not only does doing pleasant things alter the neurotransmitters that can affect your mood, but thinking positively also can help your pain.  I know a lot of people who live with chronic illness or chronic pain hate hearing, “if you change your thinking, it can get better,” but it is true.
Many people feel that using “positive thinking” as a method of treating pain is too difficult, doesn’t show results quickly enough or dramatically enough.  In a world where popping a pill is expected to be a “quick cure,” people want to take a pill and see instant results.  Unfortunately changing how you look at life isn’t as easy as just popping a pill, and the results are not instant.
Changing your way of looking at life, your way of looking at pain, is far more difficult than filling a prescription and taking a pill daily.  It requires careful evaluation of your thought process, and a willingness to recognize and change things.  Not only that, but it requires you to accept full responsibility for your emotions.
Admitting that positive thinking has an affect on how you view your pain, and how it affects your life takes away some of the idea of being a “victim” of pain.  No longer can you state that your pain “made you feel” a certain way, because now you know that pain can’t make you feel any way, but you can choose how you feel in response to your pain.  I love the quote below that has been bouncing around on Facebook, it is so perfect for those of us in pain.
We can choose each day to suffer in misery or to enjoy life as it is – and do our best to change all we can.  I’m choosing to enjoy life as much as I can, I’m choosing happiness today and if taking some pictures, admiring nature, or doing a simple art project can help me feel happy and content, then I’m going to keep doing it.