Posts

Mobility Bucket List?

I don't know if anyone else has done this, but when I discovered I would eventually lose a lot (if not all) of my mobility, I made a mental mobility bucket list. I stated mentally thinking of and doing things I wanted to do before I completely lost my ability to walk and enjoy them with my family. Now, some of the things I do need to do partially in a wheelchair because my legs cannot take the extended exertion, but I'm ticking off memories. Brown's game, Indian's game, Zoo, amusement parks, camping.... I've got a big one coming up. I wanted to walk down the aisle and dance at my wedding. This one was big for me. And in May, I'm going to tick that off the list, but that doesn't mean that I haven't thought or had fun with planning a wedding with my disability. There are some glaring difficulties.


1. My groom is a foot taller than I am. I cannot wear heels. I am resolved to just going barefoot through the whole damn wedding. I asked my daughter to carry a…

Like Genies in a Bottle...

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So, who here is an emotional bottler? Let me guess? Um... guilty... guilty... guilty... It's okay. I am among those guilty. I think a lot of us chronically ill are bottlers... partly out of necessity of our situation and partly because some of us have been our entire lives. I grew up in a "pull yourself up by your bootstrap type" family. This has gotten be through a lot of crazy. However, one of the first things you learn in pain management "boot camp" (those little programs you have to do so they will give you your frickin pills so you can go do the functional adult things people expect you to do), is that bottling all those emotions will manifest in physical pain. This became excruciatingly clear to me over the past month as I tried to once again swallow my grief and act like one more thing was not bothering me. We all know we can only bottle, so much. My pain levels cranked up a few notches and I realized I needed to grieve. Then, I started to think about t…

7,000 views and Bully Love Month!

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Hey! My itty bitty blog reached 7,000 views today! Also, I wanted to do a fun blog to celebrate Bully breed month in honor of my fur baby Sansa! Our Sansa is a 3 year old "Scott type" American Bulldog. We rescued our girl a little over 2 years ago from the local pound. They had found her wandering in the metroparks and had originally thought she was a boxer mix. A bulldog breeder later confirmed her noble breed to a friend that was pet-sitting for us while I was visiting a surgeon out of town. It wasn't always easy with our furry family member. She was hyper and has always been very strong willed. However, over time, she  has become an irreplaceable part of our family. Her personality and expressive nature makes it clear she was meant to find her forever home here with us. To me, she has become more than just a furry companion. She knows when I'm sad or upset. She senses my flares or head spikes before I do and warns me. She calms me when I am anxious. It's only …

The reason I don't do haunt attractions...

I love Halloween! I always have, but as a teenager when I started getting more freedom (and more marked anxiety) I went to my first haunted attraction at 14. It was a dark hayride through an apple orchard when you got dropped in the woods. You had to make your way through the set up woods trail to the hayride on the other side to be taken back to the cabin to get back to your car. A man with a chain saw (I had no idea they took the blades off), trapped me and a friend on a bridge where I discovered my first trigger and another friend had to yank the guy out of the way before I was able to move again. I had nightmares for weeks. I tried again at the Haunted School house and lab where one year I had to take breaks on two floors for panic attacks and another year I scoops up both my baby sisters and took off running when a clown with a chain saw ended up being the main attraction. I just couldn't do it. By the time I was 16, I had sworn off haunted attraction for good. I think it'…

The World Still Turns

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I've recently had to take a step back from my blogging and advocacy work to deal with some issues personally that have been trying. Some I will share and some I cannot. However, while dealing with everything that has come to pass, there is one simple truth that we cannot deny- the world still turns. Even when we are trying to navigate through the turbulence, life does not wait for us. We learn to wade our way back in where we fit in when we come out on the other side. And that's the thing about chronic illness, we CAN wade back in...

Now, stop yelling at me for a second. Let me explain. We obviously cannot wade back into the place where we once were. We are not the same people. The people we have spent time grieving over. The active people that had it all together and could run circles around everyone. However, we still have the same tenacity, the same drive, and the same hearts we always had. So, we have to find something new to do. Life threw a 90 mph curve ball at us and t…

How they make you feel

We all know the saying that we may forget what people do, but we will never forget how they make you feel. This was especially true for my Uncle Carl. I will never forget how loved, accepted, and valued he made me feel to my father's family. He constantly reminded me that they NEVER forgot about me and that they had ALWAYS loved me. For someone who had never had contact with my biological father's family until I was 15, this meant so much to me. He never sugar-coated my situation and he never judged my feelings. He answered all of my questions openly and honestly. I could tell him anything without judgement. So, when I found out he had passed suddenly in his sleep this weekend (we are not sure why yet), I felt like all reason escaped me. I felt such instant raw emotion deep in my soul. I did not realize life could still hurt so much despite all the meds. Our last conversation touched on a number of subjects, but we talked at length about our family history of epilepsy. My uncl…

3 years of awareness

This is my third awareness month since I got my first diagnosis that something was really wrong. I have learned so much since the word syrinx was introduced into my worldview.And I still answer a lot of well meaning questions. like 'Are you better now!?' or 'Why haven't you gone on disability yet?' or 'Can't you take something for that?' And the answers are uncomfortable because no one likes the real answers.
The truth is that I don't feel better now. I will never feel better. I have three chronic progressive conditions that will never go away because there is no successful treatment or cure. Now, I have been able to manage my conditions with meds and essential oils. I have done physical therapy and visited many specialists. I will have to continue seeing many specialists as new symptoms arise because this effects my whole body. And I've gotten used to this way of life. I know how I feel day to day or even hour to hour might change, and that'…