Tag: autoimmune

Idaho: Coming Back to My Reality For Two Weeks

After two months of travel and adventure in Western USA, coming back home (for two weeks) was more than I expected. d

We are back in Idaho. Home sweet home. However, Idaho brings about a whole new set of emotions with it. A little less than two months ago, we set out on our first adventure. There was so much to see and so much that we didn’t even have time to see. We added trips to Utah with Zion, Bryce and Cedar Breaks and Arizona with Lake Powell and the Grand Canyon. These were not on the initial itinerary but were phenomenal additions that helped me cross off some bucket list items. The entire trip was breath taking with a lot of great pictures, memories and feelings along with it.

Coming back to Idaho was a wakeup to reality though in a way. The day after getting back into town, I had a couple doctor’s appointments and today rounded it off with another optical appointment. Each brought back the harsh reality that I am not the same girl I was a year ago and there is a big possibility that I will not be the same girl a year from now. It is a hard pill to swallow.

Going on the first trip was almost an escape from reality. There were issues that we had to overcome. Days like Bryce Canyon where I can barely remember the day because the pain in my eyes was so bad that I laid in the front seat on our way there trying not to throw up. However, the storm settled and I pulled it together to go on a bike ride with the kids, soaking in their smiles and the beautiful landscape that unfolded before my eyes. The reality of how life has changed in the last eight months was always present, but less to deal with since in a way I was trying to run away from the reality of it. I suppose it was bound to catch up with me.

Oh! But I have missed Idaho. I miss the “suspiciously nice” people that live here. I miss the scenery. Good friends and a familiarity that I hadn’t had in nearly two months.

The thing that got me was the doctor appointments. It wasn’t bad enough that there were still no answers or solutions to the puzzling health issue. It was the fact that I was returning to my former place of employment. The place I had to quit because I was no longer physically able to work. My old life. It hurt more than I was prepared for. It hurt bad enough that my doctor had tears roll down her cheek as she gave me a hug and told me WE would get through this. Being there reminded me that my life has taken a huge 180 and brought me from a professionally motivated go-getter to someone who can’t read for more than 5 minutes without pain and can not work because she got death the wrong cards. It was not the place I was ready to be at.

The first couple of days in Idaho also made us think a lot about where we want  to be. Do we stay in Idaho where the mountain streams beckon to our wild west side? Or do we leave the West and move closer to family, who will not only provide the support and history but also allow for our kids to grow up while getting into mischief with their cousins? How long will we travel full-time? We are currently doing two weeks in Boise followed by two weeks on the road. What is our end game? There are so many things on the table that make things hard to figure out. What we do know is that we are happier having a simpler life. We are in a house that is about 400 square feet but are more relaxes than when we lived in something five times the size. It brings with it an easy fresh start, new adventure, or good memory. Life is better when it is less complicated. Less stuff. I focus more on the stuff that matters instead of the stuff that I once collected to impress those around me.

Coming back to Idaho has really shown me that while you can’t hide from your life, you certainly can embrace the new normal and make the most of it. It has made me appreciate the relationships I have with my friends, family and those I meet along the way. It makes me realize that we need to have an end plan. Maybe even a place to settle down and make my own. It had me torn about where I should be. For just the beginning of the Grayt Adventure, it sure seems to pack a lot of emotions with it. Good thing, we leave for the next chapter in less than two weeks. Maybe it will bring yet another perspective of the future. Only time will tell.

How to be a “Leaf in the Wind”

The lessons I am learning as I work at letting go the idea of normal.

I had a conversation with my mother yesterday. Being Mother’s Day and all, I tried my very hardest not to engage in any kind of argument, however, being she is my mother and I her daughter, that can be quite difficult. It also didn’t help that I called at a time when I was not feeling the best. I was on edge and didn’t have much patience for some reason. I would love to blame it on the medications I am on to help save my sight and even though being grumpy is a common side effect, I am bound and determined to be in control of my emotions. This means I was just not in the mood.

Before I begin this story, I suppose I should also tell you that my mother does not know of my medical issues, therefore she really doesn’t understand the basis for us renting out our house, buying an RV and traveling. She does not know that I have lost vision in one eye and that I had to quit my job due to the illness, not because I wanted to explore the country, homeschool my kids, and start a blog. She believes that I chose to do this because I am a “leaf in the wind” of sorts; not wanting to settle down and establish roots. I’m still waiting for the right time to tell her, but telling her over the phone is not the place and considering I haven’t seen my mother in over ten years, I am not sure when this conversation will take place.

The conversation started with the traditional “Happy Mother’s Day” stuff followed by me letting her know I was currently in San Diego. We talked about the kiddos a bit and how nice the shower pressure was in the hotel compared to the RV. (Surprisingly, I was not as thrilled with staying at a hotel as I thought I would be after living in an RV). She then asked me the loaded question: “So how does it feel to just not to work and travel all the time?”

“Deep breath. Know your audience. Count to ten. Close your eyes. Another deep breath. Remember…. It is Mother’s Day.” My mental list for relaxing was not quite working. Yes. She is right. I did quite my job and yes, I am traveling. But I had to quit my job. I am losing my vision. I can not stare at a computer all day. Even as I write this post, my eyes are closed due to the immense pressure and pain caused by straining or even trying to move my eyes. We are traveling because I want to see this country while I still can. We are not on a vacation. We are living the RV full-time lifestyle. I am homeschooling two kids. That is more work than ANY job I have ever had. In fact, I would be lying if I said I didn’t miss having a “real” job that earned money and allowed me to run away to a corporate environment while my kids drove their other teachers to drink. We are not bringing in the same money we used to. It is not all fun and games all the time.

I love traveling around the country. It is beautiful. The people are unique and diverse. There is so much to learn, see, visit and experience. However, it isn’t always that spectacular. It is a lot of work trying to figure out campsites, places to visit, YOUR BUDGET. It is exhausting when you realize that on top of seeing the beauty of the country, your first priority is to teach Math, Grammar, Spelling, Reading to the little people living with you and now provide all three meals of the day.

Being a “leaf in the wind” requires a whole new perspective. One that allows you to accept any change and to roll with it, whether it is good or bad. It means that some days, even though life may be shitty, you figure out how to let it turn to gold. I’m not quite at that point. I am more like a kite. I have let myself fly in the wind and am getting used to the breeze. I am learning how to soar and I pray that when I land in the branches, it is only temporary.

I wish I could tell you how to be a leaf in the wind. How to accept and embrace all the changes. Hopefully one day, I will be able to write a post about that. Until then, I have learned a few things I can share:

First: There is no such thing as normal. We are all mutations of sorts. All abnormalities trying to get along and survive in this crazy world. I don’t want to be normal. I want to learn how to embrace my new normal. Whether it is a good day or a bad day, it is MY day.

Second: Stress comes in more forms than one can imagine. Whether it is working, planning a trip, homeschooling kids, getting dinner ready or even going for a walk; there is some sort of stress that is wrecking havoc in your body or head. Having an autoimmune condition is slowly teaching me that I need to embrace the stress instead of fight it. If something is too much, I need to stop the battle. If not, I only fuel the stress.

Third: You BECOME the people you surround yourself with. Negative people only come branches keeping you from flying in the wind. I was able to see some great friends this weekend that reminded me of all the good energy that I need in my life. I am also so blessed to have a husband that is willing to sacrifice so much and be so supportive of me in this crazy time. If I gave into the fake people, the negative people and the people who thrive on insecurities, I would only suffer more. Instead of letting the negative people control me, I let them go and do not waste my time trying to make them happy. It is better this way, even if it is hard at first.

Finally: Breath, laugh, reflect, relax and enjoy the ride. You may not be thrilled at the ride you are on or satisfied where it has led you, but it is YOUR ride. Make the most of it. I don’t have the best relationship with my mother, but I am bound and determined that that aspect of my life isn’t going to hold me back. My body is fighting itself, but it isn’t going to keep me down. Gas prices are through the roof in California, but that doesn’t stop me from taking a walk on the beach. YOU are the only one who can make your day be good or bad. It is alway YOUR choice on what you FEEL.

So going back to my phone conversation. It was Mother’s Day. I didn’t lie to make her feel better but I did tell her (for the 50th time) that this wasn’t a vacation. I love homeschooling the kids. I miss working in so many ways. However, I was okay. I was making the most of every day. I was exploring and I finally was able to SEE the Pacific Ocean for the first time in my life. Maybe this summer when I am finally able to visit her and introduce her to the man I have been married to for eight years and her two grandchildren, I will tell her more about the life I have been living. But until then, I am doing my best. I may not be a leaf in the wind just yet, but I am doing alright being a kite in a field.

Claustrophobia and the Grand Canyon

Claustrophobia and the Grand Canyon. How one saved me from the other.

Claustrophobia. The fear of tight spaces. It is a very common fear and well known. Up until recently, I thought that it was a fear that a person was born with. I had never had this fear. I could crawl in the tightest spaces, unafraid of anything. However, a couple months ago, I learned what claustrophobia was… the hard way.

I was laying in an MRI machine again. With the rapid progression of my visual loss and the way my body has been attacking itself, it was no surprise that yet another MRI was ordered. I’ve had several and tried to approach this one on the light side as though it was another well-deserved nap since my body was continuously running on empty lately. I laid down on the cold, hard table and the technician placed the face mask over my head. In my mind, I remember thinking not to comment about feeling like a hockey player and just relax. So I did. I fell asleep quite quickly since lately my energy levels had been nonexistent. All of a sudden something happened. I think I went to swallow some saliva and ended up choking instead. Worst possible thing to happen in the middle of an MRI. With a face mask tightly secured, I couldn’t sit up. Frantically, I hit the panic button. Again and again and again. My eyes popped open and all I could see was this shield blocking my face; immobilizing me. Keeping me from fresh air… from breathing. I reached for the mask, trying to rip it away. The technician came into the room and retracted the table as slowly as I thought was humanly possible.

When I finally was able to sit up and gasp for breath, the technician looked at me in amazement. She asked me what happened and all I could tell her was that I started choking. When she asked me if I wanted to come back to redo the MRI, I told her that I was able to finish and that it was just a random occurrence and that I was ok to complete the procedure. Turns out: I wasn’t. That simple occurrence made me develop this random thing that is called claustrophobia. I was terrified of that mask being secured over my face again. I laid down and the moment it went over my head, I freaked out and jumped up again. My heart raced. My anxiety was through the roof. What happened to that nice nap I had expected? Now, it had been replaced by fear.

I knew that if I was going to make it through this procedure the way things were progressing. I had to calm myself. I didn’t want her to know what was going on so I asked for a drink. I knew that seeing that mask cover my face would elicit the panic I felt. So I took a drink and closed my eyes. I laid down and took deep breaths. The sound of the mask clicking into place raised my heart rate but I knew if I opened my eyes, the panic would take control. I too a deep breath and pictured a place I had never been. A place open and wide. A place bigger than life: the Grand Canyon.

The remainder of the MRI, I took myself to a place I had only seen in pictures. The Grand Canyon. It was a place that was deep and vast, open and wide, free of anything confining. I felt myself standing on the edge of a cliff with my kids as the wind flowed through my hair. Nothing held me back. Inside, there was still fear that everything would cave in and that I would choke to death, but I made my mind believe that there was a place that this could never happen.

That is how I made it through that day. Even after the radiologist ordered contrast and I had to endure another thirty minutes of deep breaths and my imagination taking me to a far away place. The Grand Canyon saved me from claustrophobia.

Today, I finally made it to the Grand Canyon. While my imagination did a pretty good job letting me know the freedom it brings, my mind did not do it justice when it comes to the depth and magnitude it holds. While sitting on the edge of a cliff, my husband said it perfectly “you can feel it’s silence”. In fact, it is so large and powerful; you feel as though nothing can escape its’ greatness. It is deafening. Frightening. Calming. Tranquil. For the first time since that MRI, I felt as though everything was okay. I was just a dot on this Earth that existed in such a small amount of time. My panic and fear was not even an blip in history. The greatness of the canyon was almost too much to take in; a counterbalance of what the mask felt like in the machine.

Now as I sit writing for the first time of that new fear, I feel a sense of relief and gratitude. Maybe I was meant to know what it was like to feel constrained and fearful so then I understood the relief of being free and grateful. Maybe I would not feel the greatness that the canyon holds if I had never felt the restraints of being out of control.

I would love to sit here and describe the Grand Canyon to you. I would love to tell you about the way the layers of rock and earth delicately fall upon one another. How the stone is older than the dinosaurs and how water and wind eroded the land to form the beautiful landscape. However, the Grand Canyon can’t be described. It can only be felt. Lived. Seen. It is a monument that pictures can only capture the surface of the power that it holds.

While I sat in that MRI, imagining myself at the Grand Canyon, I saw a beautiful canyon with an open horizon before me. Freedom and solitude that I needed to get through a procedure. Today, I saw time. Evolution. Peace and serenity. Today, I saw Mother Nature in all her beauty. Today I witnessed the power of the Grand Canyon.

Before the world goes dark

When the things you take for granted are taken away from you.

Imagine if you will. It is 7am. You are drifting in and out of consciousness, contemplating waking up when your four year old daughter lands on the bed. “Good moaning mom!” she exclaims, still not yet able to get that good “r” sound. She loves the mornings when she is one of the first ones up. She curls up next to you and starts coaxing you out from under the covers. “Mom! It’s moaning! The sun is shining! The birds are singing. The flowas are going to bloom today! You have to get out of bed!” Her giggles are contagious and uplifting, better that the coffee you can smell brewing in the kitchen. She snuggles her face up to yours, gently nudging like a puppy would do. You open your eyes. You can’t see her. And right at that moment, your heart drops and a tightness rises in your chest. You can’t see her.

You can’t see her expresso eyes glittering as the sun coming into the window hits them. You can’t see those chubby cheeks that you kiss at least fifty times a day. You know she is there, but she is hidden. You have been blinded in one eye with the very real possibility of being blinded all together. Today, you are able to roll over so the one good eye can see that beautiful miracle you made. But before you are able to think about how lucky you are that she is yours, you first have to push aside the fear that one day, that face may forever be hidden from you.

This is my story. Over the last few months, I have lost the eyesight in my right eye. My eyes constantly hurt with pain ranging from throbbing to stabbing pain. It is accompanied with other issues such as muscle weakness, fatigue, and body pain, but the loss of vision is the main issue that have the doctors struggling to find answers. I have been through more tests than I can count, yet we don’t have an answer for why I have lost half my sight or how much further it will go. As of the current moment, the doctors know I have some sort of autoimmune disease that is causing my body to attack itself, but autoimmune diseases are interesting in the fact that some are nearly impossible to diagnose or even figure out what can cure or at least slow it down.

Millions of people in this world suffer from autoimmune diseases. Some being very well known life Multiple Sclerosis, Celiac Disease, Type 1 diabetes. However, many are still random, unknown and not understood. It not only makes a person going through the process feel lost, but also a bit like they are losing their mind. There are days I can go all day without any issues (other than the whole blindness thing), and there are days where I feel like I am trying to workout while battling the flu. Days where naps are mandatory and even then, there is no energy flowing through my body. It’s perplexing, haunting, frustrating, and heart wrenching to say the least.

I have had to quit my job as a result of my loss of vision as well as the other physical tolls that this disease is having on me. I miss working. I miss the people, the job and the mission I was a part of. It is hard dealing with a constant sense of defeat, but I am not the type of person who settles and admits defeat. Luckily for me, I have a wonderful husband who has been there for me throughout this and is supporting me like no other. We decided to buy an RV. We took the kids out of school. We are traveling. We are seeing the world before the world goes dark. We are learning how to adapt.

My son is kind of like my seeing-eye kid. He walks on my right side everywhere we go and tells me what is on that side so I don’t bump into anything. He keeps me focused on the positive. My husband is devoted to finding a natural way for my body to heal itself. We are working on breathing, meditation, yoga. He reminds me not to stress myself out. He is understanding and encouraging. And then there is my daughter. Well, she is a bit too young to understand the concept of being sick. That’s what I like most. She pushes me to get out of bed. To open my eyes. To giggle and cuddle as much as possible. To go outside and see the “flowas” bloom.

The spring is here, it is a beautiful day. Let’s go out and see it.