Thursday, January 12, 2017

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 footstool and we just Lord Farquat this wedding like in Shrek. Rayne informed me 'Absolutely not, Mom. You need to wear a heel for the ceremony only. You can throw them at me afterwards, but I am not carrying a stool."


2. This brings the problem of the first dance. My mom suggested I just have a pair of heels for the important things.... dance...ceremony.... pictures. I suggested that Dan could carry me at his level. Rayne thinks this idea is hilarious and fantastic.


3. So, when I chose the church, everyone is all like- "Oh, the aisle is short, so our elderly relative don't have far to go..." Okay, true. But on a selfish note, I was thinking "Okay, sweet, aisle is short. There is less chance of me tripping over air and face-planting." Oh, did you know that they have a slip that goes under the wedding dress that holds out the skirt so you don't trip over it? Um, I call that a good investment.


4. Speaking of wedding dresses, does anyone realize how heavy those things actually are? Can I pay a person to occasionally sneak over when the photographer isn't looking and just hold up my dress for me? Like, that is going to be the main energy exertion of the day right there.


5. Oh, then, what if I have a seizure while dancing. Can I get y'all to promise that I just created a new dance craze and just make me a YouTube star? Can we just make it a thing? I mean I've seen stranger things go viral.


Yeah, that's it right now. We are going to the big bridal show this weekend. I'm sure I'll have more to think about after that one. Have you guys planned your wedding while currently disabled? What about a mobility bucket list? Anything I should do before my legs wreck themselves completely? Hit the comments!

Thursday, November 3, 2016

Like Genies in a Bottle...

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 the idea of active grieving.

Anytime we go through changes, there is an emotional grief of the old way. I don't know who goes through more changes than a person who is chronically ill. There are new lifestyles, treatments, diagnoses, relationship... then there is loss. We lose dreams, self, identities, family, friends, self-esteem... etc etc. How many of us get stuck in the emotional badlands? We let all that fester without letting it out or really dealing with it. We have to allow ourselves space to be authentic, to grieve, to be angry, and to roll with the punches. We spend out days putting on masks for the ones we love and sometimes we get so good at it that we even mask our true needs from ourselves. I fully believe that acknowledging the change and loss in our lives is a necessary part of self-care. So, what emotion have you been hiding from lately?

Tuesday, October 18, 2016

7,000 views and Bully Love Month!

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 fit that I write a blog to celebrate this amazing furry grumbler! Oh, she also likes camping and barking at squirrels. You know... dog things ;)

Sunday, October 9, 2016

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's just recently I have begun to understand some specific nuances about my own brain that just meant I was not made to be that kind of adrenaline junky.

A recent 2016 study shows that those with Chiari Malformation 1 are predispositioned for hyper-vigilance. Hypervigilance is also a common symptom of PTSD, fibro and other chronic pain disorders. So, I suppose I should explain what it is. Hypervigilance is an enhanced sensory state accompanied by exaggerated behaviors designed to better detect threats... it is also accompanied by heightened anxiety that causes extreme exhaustion. A hypervigilant person is always on guard.

So, light and sound sensitivity, always looking for an escape, sleep disorders, heightened reflexes etc etc etc. So, while I wanted to be like all the other teens going to haunted houses, my body and mind was unable to handle the sounds, lights, and potential threats (though imaginary) that occurred within these attractions. So, this also has be wondering if this same hypervigilance would be the reason why my alpha waves continue to be so high during my sleep studies. Anyone else who has experience with hypervigilance have similar experiences? Do you have sleep or sensory disorders? Let me know below!

Monday, October 3, 2016

The World Still Turns

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 told us to watch the fuck out and we didn't duck in time. Opps!

So, we learn new ways to do they things we once did. We use tools and adjust to life as a chronically ill person and we continue on. We do things a little slower, and take more breaks. We understand the need to reserve energy for big events. We know which events for which we will need canes, wheelchairs, electrolytes, and extra meds. We know when it is prudent to hit the doctors and when it is better just to hit the pillow and wait it out. We haven't given up on finding answers or new treatments, but the people in our lives need us to be in life too. And, the ones that really love us accept ALL the ways we strive to wade back in after our dreams have been crushed.

We make friends in the oddest places. We pick up new hobbies. We find compassion in the waiting room at the physical therapist. Our world becomes a lot smaller and a lot more medicated, but it keeping turning. And even if all you can do is breathe today... by golly... you're still moving. We got this.

Monday, September 12, 2016

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 uncle experienced the gambit when it came to seizures, and my grandfather experiences a special type himself. This subject had been on my blogging radar due to it's importance to CM and SM sufferers, so in honor of my dear late uncle I dedicate this blog to him.

Epilepsy and Seizures

The Epilepsy Foundation states that seizures are caused by problems with the electrical and chemicals signals in the brain. What happens during the seizure depends on the area of the brain affected and can be caused brain injury, infection, or genetics. Sometimes, the cause is unknown.

There are two groupings when it comes to the types of seizures: primary generalized seizures and partial seizures. Each begins in a different part of the brain. Primary generalized seizures involve both halves of the brain and begin with a widespread electrical signal. These usually have hereditary components. Partial seizures usually start in one area of the brain. These can be caused by head  injury, infection, stroke, tumor, or cortical dysplasias. Genetic factors can be involved here too.

The definitions of the different types under these groups seem to be in flux between different sources. However, some symptoms of seizures can include auras, change in consciousness, uncontrollable limb jerking, staring spells, and temporary confusion. It is important that you contact your health provider immediately if you feel you have experienced a seizure. Until next time... Namaste and Blessed Be.

Sunday, September 4, 2016

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's just the way it is. And, no, most the time, there is nothing I can take for that. 

And at 30, I am not willing to throw in the towel and go on disability. I would probably lose my mind. I would most certainly qualify, but I'm looking for a certain quality of life for myself and my family that I'm not going to let these conditions take from us. I'll have to bite that bullet someday,but not anytime soon. 

Overall, I'm grateful for the support system that has been so critical in helping me manage day to day. I certainly don't feel I would have managed this well by myself. Many don't realize just how important they are and can be to their chronically ill friends and family. Mental health factors into well-being of chronic health suffers. So, if you haven't hugged your chiarian yet this month, you should put a gentle hug on your to do list soon.