I know nothing of this topic. I will come back to it when I have actual content!
I know nothing of this topic. I will come back to it when I have actual content!
I have been cooking for the better part of 30 years. From simple things like toast and how to make butter to cakes and cookies to candies and roasts and pies. I learned how to make almost everything from scratch from bread to pasta to egg noodles, sauces and stocks and desserts.
As I learned how to cook various foods and use different tools, I was taught the safety rules of everything. How to properly handle sharp and hot things were constant drilled into me from a child until I was a teen and began working in a restaurant. I had to be safe because I used bread knives (which can cut you) and an extremely hot espresso machine.
Not a week ago I was boiling pasta and I just grabbed the pot handle, luckily I caught myself. A day or so later, I was going to check the headlamp in our truck and I turned it on. Now, I have worked on cars since before I had a child, and I know better, but with my right hand I grabbed the wiring harness that connected into the bulb, and with my left hand I GRABBED THE BULB! Then, with my right hand I juggled the wiring harness to see if it was causing the sporadic outages until I felt a thousand suns on my left hand. I opened my fingers and there was skin burned unto the bulb, so it was definitely getting changed. I turned off the truck and the lights and went and got an ice pack. Ever curious, I took my three screaming fingers and the ice pack back out to the tuck and grabbed the bulb housing (where I SHOULD have grabbed) and examined the coils in the glass. They weren’t perfectly aligned and some look like they somehow got turned around. Made sense, it probably wasn’t getting a solid connection with twisted coils. I examined the rest of the bulbs with the lights off and put the housings back together so we could go to the store and get the bulbs, then I replaced them later.
However, this is a serious issue that seems to keep coming up, especially in the kitchen. I can take something out of the oven, take the oven mitts off and turn around and grab that dish. I bought an aloe vera plant because I am a menace to myself. I grab the handles of iron skillets that I KNOW have been on the stove cooking and it’s like I have no thought about it at all. This is one of the reasons I have slowed down cooking is because I don’t want to really hurt myself or anyone who may be in the kitchen with me, so I try to wait for days when I feel good and someone can still be there with me to keep an eye on me. I think of it as another small dignity I have given up for the good of myself and those around me.
This process of going through memory loss and all that we are doing to try to preserve what is left is difficult and we all have had to make sacrifices that really were awful, but needed to get to get this far. We all plan to keep making them until we have answers and nothing else has to be given up!
I am pretty sure I have talked about it. Maybe not as much on here as on my other blog, but being unable to create stable, flowing memories has a curious effect on my ability to place things in time. I have a difficult time putting memories in order or even knowing if something was a few days, weeks, or months ago.
This is something that is lightly addressed by my doctors as I suspect there is very little they can do for me in that respect. I am not creating mile markers in time. I can still tell what time of year it is by the sun, but what does that even mean in the context of real life? I have to live by a schedule that I loved at some point but now I feel like it is a burden. What if my body does not FEEL like getting up and going to another appointment.
Doesn’t matter because I have to go anyway. I often am waiting 2-6 months for appointments, so when they come around, I go even if I feel like death is nigh. The rate of descent news from these visits is probably around 40% because most of my doctors are pointing their fingers at my brain and my neuros are scratching their heads because I am not a textbook case of someone who has chiari and a normal decompression, I had problems before I ever came in, I had already felt the boggy breath of the reaper as my brain exploded into my neck. Am I rambling? Sorry!
In the end the appointments are necessary to make sure that the doctors, my family, and I can be on the same page and collectively understand what our treatment options and expectations are. Not having a regular schedule beyond church and doctors and naps is probably detrimental to my health. We are working on it. It is a little harder now that I can’t drive. However, know that you are not the only person going through this. If you have ha a major trauma and you can’t get it together, THIS IS YOUR GRACELAND! I feel you. I too am tired. I too had med-head. I too need to take 2, sometimes 3 naps a day.
If you can’t figure out why it is so hard to get it together, I can be the first to introduce you to brain injury, Either by book or by force. No one, not even these prominent doctors can truly understand how the brain and mind function, however they seem to be able to spot when it is not functioning well. You may think many people fake their symptoms, but you’d be surprised at the number of improperly treated brain injuries. (This can either be from patient refusal or from under trained doctor who cannot spot the signs of abnormal cognitive behaviour and speech and they just give them a mental health stamp and never look at the brain as the cause).
That’s not true! You yell at me!? I kept going back to the doctor for 8 months telling them something was wrong, and they told me I was depressed and sent me to a psychologist. I went to that psychologist for SIX WEEKS trying to figure out the root of my hypochondria before I was told my cerebellar tonsils had herniated out of my head and into my neck and I needed immediate surgery based on my symptoms,,,you know, the ones the other doctors told me were in my head. Technically they were, just they were now starting to fall out!
Especially in out intelligence we must consider how to humbly deal with the unknown. The last three years of my life have remained largely unknown to me. My doctor says that it won’t come back. It is lost forever. The people I have met, the things I have done, washed away as I open my eyes from sleep. waking up every day, checking my phone to see the day and month. My life is like a mouse treadmill right now. It isn’t really going anywhere and the scenery doesn’t change. I hope that this part of my life gets more interesting, sooner.
I think it is unsettling to have pain and not have a reason for it, so, here is another lie I tell myself about my headaches! I just need to eat something! I just ate? Well, I didn’t eat enough!
It is crazy to think that eggs and bacon are going to fix what is wrong with me, but something about my memory problems gives me this daily dose of hope that things are going to work out just fine once I do a certain thing. Then, when it doesn’t work, I am forced to accept that hunger was not the reason for my pain. It is OBVIOUSLY some other thing that I believe I have control over.
Just wait, I have a whole purse full of lies that I tell myself. I will keep telling them to myself because it keeps me moving forward. I don’t want to lose faith, so I choose to believe that one day, one of these things is going to stop my head from hurting and I can just be thankful that the pain is gone. Like, I would love it if God gave me healing eggs, but if He chooses to allow me to go through this insanity, at least it is interesting and full of plot-twists.
If you are struggling to keep afloat, remember that there is always the chance that pain can go into remission. Whether you share my belief system or not, people have experienced pain relief through various methods and sometimes it is spontaneous. If you don’t get the relief you have been searching for, don’t let that keep you from enjoying however much of your life that you can. if you can only do a little, do it well and be thankful. I know it seems cliche, but thankfulness can have a terrific effect on how you view your situation and once you spot a little bit of good, you are likely to find more and more.
I hope you find the joy you seek, even if it takes time. Know that I am on the same journey as are millions of others in the world.
Going through the medical dog and pony show has been quite the eyeopener for me. I now understand things about people in pain that I never even considered. I also now feel the inconsiderate thoughts and words of others and it can be very alienating. Some people are mean because they think it is funny, some because they don’t know better. Some treat me with kid gloves or like I have become a fragile relic, some artifact that reminds people of who I used to be.
Then there are the people who feel like I have overcome some supernatural enemy and I stand in bloody victory waving my banner. They weave a narrative about how horrible everything became then how it was miraculously transformed and I have earned some type of sainthood for enduring life. And while I imagine is is great to bask in that feeling, I do not wish to be stuck in my own puffed up head as if I had much to do with surviving my ordeal.
I am no hero. When they told me that I had to have brain surgery, I sat in the parking lot and wailed as if someone had died. I called my mom and was in such a worked up state that she had to calm me down before I shouted that I had to have brain surgery. I hear my daughter gasp. Mom’s phone was on speaker because she was driving. My daughter, who was on her way to a performance, had heard me lose my marbles on the phone. I went to my sister’s house and cried for three days. Sometimes she sat and cried with me. Other times, she let me cry in solitude.
Hard to imagine Batman ignoring everything (even my own child) because he was told his brain slipped out of his head and was drooping into his neck. He has his own source of pain though. I suppose this is where we differ. He has turned his pain into a mission and proactively fights crime. I am good to be making it to my doctor appointments. While I do some volunteer and advocacy work, I am not fighting for anyone else right now, I am fighting for me. So that I can have the ability to speak out for other people who don’t have a voice.
Just imagine how awkward it is for someone to tell you that you are brave for living or a hero for living or an amazing person for living. I feel like that takes away from people who are actually heros. A firefighter puts his or her life on the line daily to save others from dangerous situations. THAT is a hero. Police deal with all sorts of insanity, knowing every day that they leave their house might be their last. THAT is a hero. Our service men and women willingly go out onto battlefields and too often come home changed physically, mentally, or emotionally. THAT IS A HERO.
My neurosurgeon spent 6-8 hours operating on my brain with the full understanding that my entire life was in the care of his highly skilled hands. HE IS MY HERO! He got me out of there alive.
Still, I am no hero. I feel that we shouldn’t use that word so lightly. If put in my situation, most people would do pretty close to what I have done. Deal with it day by day. Try to enjoy the good times. Complain about the bad times. Really, it is a dull existence that pushes me to want to become a hero of sorts. I spend a lot of time with doctors, on the phone with insurance and doctors, and scheduling future appointments with doctors. Not nearly as heroic as it sounds.
Don’t let that fool you though.
I plan to be a hero one day and use my abilities to assist my community. Then I can accept being called a hero. Living in pain is a life that many people have and they make it through. They go through the same things I do, at times more and they aren’t being called heros. They are often forgotten about. Some are considered a burden and are made to feel ashamed about their condition. I just happen to look “normal” and seem “normal” to many people and so I must have overcome some giant hurdle and I am now an inspiration. I wonder if I am as inspiring when I haven’t taken a shower for two days and my hair looks like a rat’s nest and all I want is coffee and cartoons because my head is killing me. Am I an inspiration when my attitude is like a fiery cyclone leaving only destruction in my wake?
No. No I am not.
I do not wish to be. I want to be Michelle. A mom. A minister. A witty woman. All of this other stuff that is going on is just me doing the things that I have to do to keep going. I am not sure how to just give up and that is NOT heroism, it is simple perseverance. I have to keep going so my daughter has me here to help guide her through life as well as I can. That is the SAME THING that every mother does no matter her situation. Sometimes I don’t do as well or go as fast as other parents, but many parents are perfectly healthy and slow.
Life would be easier if we recognized that it is not brave or heroic for going through a medical procedure, it is simply a part of some of our lives. I would like to feel welcome and loved instead of having to live up to the standard of a hero. That is too much burden to bear. I am human and I fail. I have moments where my faith is wearing thin. The best are the moments when I can’t control what is coming out of my mouth and I would be considered ANYTHING but a hero.
So, before we celebrate victories we can’t comprehend, let us just treat each other well and be there in the victories and the losses. Be there when the test results come back and aren’t good or be there in the middle of the night when there a tears of pain overflowing. You will find a fragile human with issues that is not wearing a cape, but is wrapped in a blanket to help feel comfy. There will be no soaring through the air, only splayed out on the sofa or bad, trying to stay in a position that feels OK!
While the sentiment is lovely, save it for the people who deserve and earn that title. I am a fighter who is training to be a hero someday.
*This is the viewpoint of Michelle. If you take something in here personally, look up “conviction”. I really just want to inform people and I sometimes just say it in a very direct way. Stay real.
There is nothing like waking up and being able to go through your whole day without having to be fake. Now, when I say fake, I mean doing anything that is not based off of the true emotion that I feel at any given time.
If I have bothered to get up and put on an entire face of makeup, it is because I look so bad that people will ask me if I am sick (or if I know I look terrible) and no one wants that. So, I get up early on Sunday and spend 2-3 hours doing my hair and makeup (a lot of rest breaks) so I can at least feel good about the way I look.
Of course, that means that I am cured.
Yes, this is what people think. I use a good layer of primer so that they can’t see how uneven my skin is when I put on my liquid foundation. Then I blend a bit and add concealer because sometimes my skin hates me and gets blotches, and don’t forget about the under eye concealer that drowns out the dark circles that often grace my face. Pink blush on cheeks, nose, forehead, and chin because I need to look like I have decent blood circulation. Blend. Blend. Blend. Contour nose, cheeks and jawline because my weight keeps fluctuating and I need to look like I have some angles. Blend. Blend. Blend. All of this goes down my neck to my chest so I can be the same color and not have to worry about my face being so bright. Then bronzer on bony structures. Blend. Blend. Blend. Then all of the eye makeup and lie-brows, which is where the most effort is put in as far as coming up with a theme and creativity.
As a rule, when someone comments on how “healthy” I look, I thank them for their kind words and let them know that it is really just makeup. I don’t want people to get the idea that there is nothing wrong with me, but I also don’t want to look half dead. I can blame a lot of it on myself because I do many wild and free designs with my eyes. Still, I would love to live in a world that doesn’t pressure me to look one way or another. That doesn’t make me feel good because I “look healthy”, and it doesn’t make me feel bad for “looking like I actually feel”. Unfortunately, I think humans, like other animals, take a lot of information from visual clues to draw conclusions, so I am kinda part of the problem I guess.
I doubt that a day is coming where I will be able to go do things in my true ugly, splotchy-faced, racoon-eyed form and no one will take notice. For goodness sake, though, just say “Hi” and move on (unless you have something to talk about) if you know the person is chronically ill. You will greatly reduce your risk of saying something they may cry about later.
It may be PETTY, but I am going here anyway. Most people I know are aware that I have had brain surgery. Many know I suffer headaches and other symptoms still. Some actually understand the surgery and issues. A golden few ‘get it’ and they are my favorite folks. (I want so badly to be sorry, but I am not.)
So, prior to my whole head thing, people would say things like, “Hey Michelle, how are you?” or “How are you doing, Michelle?” like normal folk do. There has been a change in the greeting and I am going to be honest, it drives me to the point of unfathomable ire because it turns me into the very thing that I am struggling with.
“Hey Michelle! How is your head?”
Uh, small and hurting, but what about the whole rest of my being? You know, my emotions, my heart, my mental status, and every other part that effectively sums up “MICHELLE” is stripped away and all that is left is a head with a name. I am more than just my head. I know people WANT to hear that my head is doing fine, that allows them to infer that I am also fine. The only answer I have left to give is that I am still alive; My head is still there and as far as we know, my brain is still in it. THEN I AM THE BAD GUY! When they were just trying to be nice and see how I was doing and you know, I shouldn’t pay that close attention to the words people use because sometimes they speak so carelessly…but THAT is the problem, isn’t it?
People speak carelessly. Not choosing their words to comfort one another, but using words that betray their true desire; to get the skinny on someone so that they can either be thankful to God or whatever that person happens to believe in because there was a healing, or to question the validity of one’s faith or illness.
Then I told people I had balance issues, they thought nothing of it. We’re getting old is what everyone likes to say. When they see me with a cane because I fell or do not feel steady, then somehow my issue can be taken seriously. Now that I have a medical aid, I am much more believable. Now the focus is magically pulled back and a fuller picture can be seen. Weird how that works.
If I come back without the cane, I am fine again. Often, people do not take the time to consider the real situation of another person. So, they will ask what is wrong, but they don’t really want to know if it isn’t good or gossip-worthy.
In closing, I want to say that if I am of concern to you, ask about ME. If you are that concerned about my head, ask my neurologist. Choose your words to interact honestly because I feel when there is callousness and fakery in your words, but I usually just allow them to hurt me because I am used to pain.
My idea of a “real” headache has changed drastically since 2015 when I experienced the first of many unrealistic headaches. The headaches I used to experience would be welcome friends today. What pain meds am I on for it? Glad you asked! None!!
Right now, I deal with the pain through sheer determination. The worst happens to be when I need to sleep. I can be so tired, by whole body is ready for the sweet release of REM sleep and the feeling of a hot metal bit boring through my brain keeps me right on the edge of sleep. Where any movement is greeted with a sledgehammer to the back of the head. I feel like I am being held hostage and tortured by my kamikaze brain. It doesn’t care if we both go, as long as I hurt.
The morning after a night of this insanity is the freshest Hell on Earth. People are annoying for no reason. It’s hot. The coffee tastes off. My clothes don’t fit. My thoughts are slurred. Everything that comes out of someone’s mouth is oer stupid than the last thing I heard. It devolves quickly into a mess that I care not to be involved with.
So, how do I cope with this kind of headache AND not kill every human? Easy! First, if I have been up all night, I cancel all of my appointments (if possible). I can handle one appointment for a short period of time. Otherwise, I limit my interactions to my family members (so no phone calls, texts, or responding on social media). I can be honest with my family and tell them that I am not having a good day and I am irritated and annoyed and I am having trouble controlling it. These folks will listen to what I am saying and give me the space I need to nap or watch cartoons, or just sit and be mad.
Unfortunately, we cannot always control our symptoms, even if we are doing everything right. We still have the power (in many cases) to choose where we go and who we interact with. I also understand that everyone doesn’t have a super-supportive family like I do, so it may be harder to find your voice or set your foot down. This is my way but surely there are several other ways to handle post-insomnia irritation.
I ALWAYS recommend therapy because it can be a great way to get your feelings into the air so you can rationally think about how to deal with them with the guidance of a professional. There are plenty of resources online to help deal with anger and non-medical means of pain control.
In the end, you may have episodes where you just get out of hand. It is difficult, but grab a tall glass of milk while you eat crow. Apologize and try to explain why you behaved in an unseemly manner. Most people understand intolerable pain. It may not qualify as “your level” of pain, but everyone knows their worst pain. I am sure that someone out there will say there is no need to apologize. I wholly agree, but there is nothing wrong with making the first step to reconciliation, especially when it is over something that can easily be forgiven and laughed at.
This life isn’t what we asked for and it probably isn’t what we want, but we all have a role to play in life and for some of us it is to be an example, a beacon, and an advocate. Once you realize what you need, you will be able to help others obtain the same thing.
Also, can I sleep now? Is this enough words?
There are many things that challenge me in life right now. It has been a long road figuring out what I can and can’t do about certain situations. I CAN call and check the status of a referral, even ask them to expedite it. I CAN NOT circumvent any part of their process and having an attitude with them with NOT get things done faster. So, it is empowering to know that I can keep track of the process.
However, I have some remaining frustration because I only have so much control over the process. So, my neurologist referred me to Music Therapy. I consider myself a musician. I sing, I understand Music Theory, I write, but I am not at a professional level and right now I pretty much just enjoy listening to music and playing my ukulele. So, when the therapist was explaining to me that we were going to listen to music and not offer any views about the musical structure or type of music, we were going to focus on how the music made me feel and why. I was quite skeptical.
Although I didn’t get to finish, being a student of music caused me to become very critical of music. Not in the negative way, but to listen to the instrumentation, the rhythm, the back-beat, the notes in cracks, and all sorts of musical methods, so I was not convinced that this was going to be a successful therapy. HOWEVER, I remain open to all of my doctors’ suggestions and try them because I am willing to do anything if it means I will get better.
I have been in Music therapy for three months. I love it! So, for the curious, I will spill the beans on what happens in some of my sessions.
We go into a little office either with a desk or with really comfortable chairs. It depends on what she has planned for that session. If we go with the desk then she will do a guided meditation with very neutral background music that does not follow the common harmonic progressions that we are used to hearing. It is the type of meditation that allows you to focus on the physical feelings in your body and focus on each part and relax it. Then, you think of a place that make you feel happy or loved or comforted, kinda depends on what you are going through. When you think of this place, you look around, in your mind you focus on the things in this place that you find beautiful or comforting and you impress that feeling of calm in your head. Then, you get to draw the place! Once it was a forest, dappled with sunlight. Once it was a banana split. I don’t question the meaning of these things because that is not the point. I enjoy both things and they make me happy and comfort me.
Sometimes we go into the room with comfy chairs. In this room we do a different, more challenging type of guided meditation. Often it is dealing with a specific anxiety and sort of untangling it and allowing me to look at the situation without distraction. What this does specifically for me is helps me see what I have the ability to do and what is outside of my ability. I can then act on the things that need attention and I do not feel guilty about things I have no control over. It is really great.
One of my favorite exercises is lyrical analysis. We don’t stick to any particular genre of music, she chooses music based on lyrics. Remember, it is not a time to spend judging the musical composition of the piece, UNLESS it is in conjunction with part of the lyrical structure. We talk about how the words are used in the song and if I can or cannot relate to it. I am always asked what phrase catches my my attention the most and why. It has exposed me to music that I would have never listened to on my own and I have bought a few of the songs.
The most important thing we did (in my opinion) is on our second visit she helped me create several playlists that I can use to help shift my mood when I am upset or frustrated. It is a way to acknowledge how you feel and then proactively improve your mood by listening to music that is gradually uplifting. At this point, I can just pick and choose a song that matches my mood, one that feels comforting, and one that makes me feel energetic. It is a great tool for preparing for situations that I expect to be anxiety inducing and I use it all of the time now.
I must admit that the worst part of music therapy is that it is not an ongoing type of therapy. We work in four week blocks and then we do an assessment. When I started we met weekly and now we are meeting every two weeks. Eventually, we may only meet during times of medical and severe emotional crisis. I am very thankful that my therapist is the kind, gentle soul that she is. I am glad that I can describe my feelings to her using musical terms and she gets it.
I am glad that the art therapies are becoming more common in the treatment of chronic illness because everyone needs a way to express themselves and music touches us in ways that can be indescribable but understood. I encourage everyone who has the ability to take advantage of alternative therapies in conjunction with the more traditional treatments and therapies. You might be as skeptical as I was, but you might end up advocating for more access because of how helpful it was. Should you try it and it doesn’t work for you, don’t give up, try something different. We can’t always get rid of the pain or sickness, but we can change our perspective. It’s VERY DIFFICULT, but it IS possible!
I am by no means famous or well known on the internet. I have focused most of my social media accounts on Chiari Malformation awareness and just preserving the essence of my experience since my memory is so poor. The account that I probably use the most is my Instagram (FOLLOW ME: michellex2plus) and so it is where I tend to have the most interaction with people about Chiari.
I post about my headaches and without fail here come the Snake Oilers. They tell me that their concoctions will not only rid me of my headache, but make my skin brighter, restore my soul, bury my skeletons, slim my waist, harvest my crops, improve digestion, restore circulation, align the planets and get mercury out of retrograde, thicken my hair, and make my nails grow.
I WANT TO BELIEVE ALL OF THIS!!!
The problem is that this is some person out there who saw a hashtag that somehow aligns with the product they have chosen to push and they don’t care that they might be derailing the actual healthcare of people. They don’t care that there is no scientific proof that essential oils can fix Chiari Malformation. They don’t care that being bombarded by false hope is disheartening and tiring after a while. I have spent almost 3 years with awful headaches and there is no medication they have given me that stops them. Yet, some person out there thinks that a coffee enema is going to get rid of my pain. If that was really a thing, I would have done it already, as I am often desperate for pain relief.
To make matters worse, many of us with chronic pain are on a limited or fixed income and still there are people out there who are willing to take your little bit of extra cash in return for something that might help you feel good in some way but may not do what you were told it would.
I love essential oils. I have one of those sonic vaporizers for the essential oil, and I often have something coming out of it. Does it lighten my mood? Sure! Does it make me smile? YES! Does it take away any physical discomfort? NO! Have I had someone some to me touting the “healing powers” of essential oil? Yes! I tend to school these people on exactly why essential oil can not fix a brain herniation or intracranial pressure. Then I let then know where they can learn more about Chiari Malformation and how they can actually help people. Last, I block them. I have done all I can and they need to get it together without me.
I have suffered. I have cried out in agony. I have plead for the pain to end however it has to. I have sat as day after day ticks by and I lay in the same place drowning in the misery of a sea of hurt. I WANT the easy answer. I WANT the oil to take away my pain. I WANT kale to make me whole. I DEEPLY DESIRE the relief that spraying coffee up my hind-parts promises.
We live in reality folks!
Most people on the internet selling you promises aren’t properly schooled in herbal remedies and are not as familiar with plants and their healing properties as they claim. Even if they are, you should be willing to do your own research, have a reasonable expectation (JUST LIKE WITH YOUR DOCTOR), and understand any risks associated with what you are taking into your body.
The road is long and there are not always answers for us. I have to tell myself this multiple times a week. Shortcuts won’t always lead to the finish line. Sometimes we will just have to tough it out.
Living in the desert has some very distinct disadvantages for me right now. I have lived out here (for the most part) since 1996 and coming from New Jersey, I love the winters here. The summer was always awesome too, until I had the brain surgery. I had the surgery in December and I remember going outside in the mornings and being warm while my sister was bundled up. After a short walk around the courtyard pushing the walker, I would come back inside and have to take off all excess clothing. She told me I kept it freezing in the room.
I don’t remember much of any of the previous summers, but TODAY was hot enough to melt my thoughts (around 115). I rapidly lose energy and focus in the heat so I tend to plan my events so the I am not outside for a long time. I have to have air conditioning in a vehicle or a building. I can overheat from doing my hair. Or getting dressed. It feels like such a horrible weakness to have in the desert.
I try to remember that I am blessed to have refuge that not only has AC but also cable, food, and a pool. It is easy to focus on what I have lost: I have the lost the ability to endure extreme heat. As I learn my life lessons, the positive things that have remained or increased have begun to outweigh the negative things. In reality not much has changed except my perspective. Turns out that was the most important change that could be made.
Still, at times I find myself in the broiler that is outside and I am amazed that the human body can withstand such brutal temperatures. People have lived in the desert for many years in all kinds of deserts. I am so thankful that I had the opportunity to endure the heat and work in it, and hike in it, and all other manner or activities I did. I enjoyed those times so much and I had an awesome tan! Now, I am thankful that my life affords me so much air conditioning, cold water, and frozen treats. I have what I need and in this world that is a miracle.
If you find yourself in a situation that is not awesome, take the time to consider the good things. Now, this is not what you should do if the situation is dangerous or abusive, but if you are just in a funk about life or a thing, take time to consider the things that you have that seem inconsequential but make life so much more convenient and comfortable. If this exercise doesn’t even come close to touching your issue, I recommend talking to someone (from a trusted friend to a therapist) who can help you get the assistance you need to live a happier life.
Should you see or talk to someone who is in a terrible funk about something, let them vent and blow off steam. Many times people just need to direct their excess energy outward and then once they let everything out they can think a little more rationally. Never undervalue someone’s feelings or their current reality. Each of us has a unique life experience and each person has something that they struggle with. Some people have multiple things. Lending a caring ear and validating that the person has a complaint (even if you don’t agree) allows a person to feel heard. I often spot my own flaws in thinking when I vent. Hearing my thoughts out loud helps me to make sense of my feelings.
I wish more people could understand that my body does not tolerate heat well. I don’t want to be the only person sitting inside at gatherings. I don’t want to be the one who avoids get-togethers because they are outdoors and I can’t do over 75 degrees. I hate that temperature is something that influences everything from household comfort to vacation destinations. I am not trying to be the center of attention or bail out on my friends. I know I LOOK fine, but I am not OK. I have symptoms that control most of my life, from walking to the going to the restroom. Life for me is a little crazy. So, if I am going to take the time to get ready to go out with friends, it is because I have been guaranteed a nice cool place to rest.
I tried on my swimsuit from last year. I have not gotten smaller, that is for sure. A stick in my side is my weight right now. Not because I want my summer body (which has been missing for AT LEAST 15 years, put out an APB) but because I can feel the excess weight on my knees and ankles. Still, I won’t lie, I would love to have my awesome body back!
So, recently I took a Functional Capacity Evaluation. Normally they are used for worker’s comp or for return to work after an injury to make sure that the employee is sufficiently healed and strengthened to safely do the work they were doing. In my case we are using it as a baseline. I obviously can’t go back to being a warehouse worker, however I was happy to learn that physically I am able to do some kinds of work.
More importantly, it has given me a baseline to use to put together a workout that is good for tackling the areas that I really need to get stronger. The test is laid out in such a way that I can easily read it and pull information to use, so I think that is probably what I will do.
More importantly, I want to send out the message that it is ok to want to change your body into something healthier. It is ok to be happy with your body just the way it is. It is ok to make little or great changes as long as you talk to a doctor first and do it safely. There are so many messages out there about how you you should look, but focus on how you want to feel. That will get you much more satisfaction from whichever route you choose. Know that I am standing (sometimes sitting) behind you, rooting for you and your continued success!
It can be hard to accurately describe one of my headaches to someone who has never endured an injury that resulted in severe nerve pain. In the spirit of spreading awareness, I would like to share some of the descriptors that I use when dealing with brain pain:
I could go on and on. There is not a pain that I can’t accurately describe using colorful language. At times I use more color than at others. I could never use just one set of words to describe the pain that graces my grey matter as it continually is morphing from one misery to another, afflicting different body systems as it crushes my faith in endorphins.
If you can’t imagine describing your pain in this kind of detail, count yourself among the blessed. Hopefully that means you have never had to experience this pain. If you have a list similar to mine, I offer my condolences. There is no one who should have to deal with pain all or most of the time. Unfortunately this is not how the world works and some people live with their pain as a constant companion.
So, if you run into someone or you know someone who has chronic pain, don’t even pretend to understand the level of hurt they endure. As much pain as I endure, I don’t act like I understand the pain of others, I only know my own pain. Just offer your support and comfort. Chances are, any advice you have to offer is terrible or they have tried it and don’t go on a quest to fix them. Just support and love. Trust that you probably don’t know more than their doctors, so no medical advice! Just support and love. You would be amazed how encouraging friendship can be.
I am human and I love dogs. I have been this way my whole life, but right now, I am not in a situation that allows me to have pets. That is probably good for now, considering I may not have the energy to properly care for a pup. That doesn’t staunch my desire at all, though.
I think that there is a part of me that wants to take care of someone else. I want to be the caregiver instead of the cared for. I suppose I would love to see myself in the stronger roles in life. Still, this isn’t the right time, so my dream will remain a dream.
So many people I know with chronic illness or pain have a fuzzy companion and I think part of it is also just having a companion that never tires of your voice and loves snuggles. Humans are wonderful, but sometimes my neediness is too much for them. I suppose a dog would enjoy me talking to them since they would have my full attention.
Forging relationships and trust with animals has always been easy for me and I just miss having that comfort. As a child life was unpredictable and often frightening, but there was something about the dog that was reassuring. He offered and reciprocated love and compassion. A love untainted by annoyance or anger. Dogs are such precious gifts. Cats are too, but I need more attention and affection than a cat is often willing to give.
Either way, I have to wait until I get situated in my own place again. Then I can go down to the pound and rescue a doggie!
I am no doctor, nor am I a scientist, but I can tell you that your support system can also include the animals that help bring you peace and calm. People are a wonderful blessing and a valuable resource when it comes to major life changes, but they are human and no person can take on everything. Having a pet that helps to cheer you up or make you feel loved and safe helps bring balance to many lives and I think in the future I will benefit from this. For now though, I am going to dream of the lil guy who will someday get 30% of my snuggles and love!
Most people make plans for the summer and I suppose I do too. Turns out, my plans are not always fun but they are quite necessary. Like jobs, medical appointments don’t take the summer off so I am trying to enjoy the time I have around these visits. The downside is that seeing specialists means that I scheduled most of these appointments in the Spring and they take precedence over every other event that crops up during the summer months.
Birthday party? Not on a Friday, I have Music Therapy every Friday and it is tiring. Anything on a Tuesday is forbidden since I have my regular therapy and I also use it as a doctor appointment day. Sunday is church, family, and volunteer day. We are now down to 4 days that aren’t even in a row.
Now, because I finally received my accident settlement, I was able to put together a week where I had a staycation on The Strip and I managed to live that good vacation life for 8 days. It was wonderful to be able to take that break because although I will spend the summer being tested and evaluated, I won’t have any answers for a while. I will still be in a state of limbo for a bit and that is just stressful.
Luckily, we have a pool and cable and air conditioning here at the house. So, I think that while I can’t make it out of town or to all of the events, I still come out on top. I don’t actually have to leave to enjoy a smoothie while floating on the water. I am learning that every situation has a better viewpoint than I give it credit for. I am a little jealous of people with the means and ability to do all of the things, but I am surrounded at home by the things people go out to find! Fancy coffee? Got it! Hot tub? Got it! High-speed internet? Got it! Plus an awesome family is included!
I may be at home, but home is like a home away from home but still at home.
Recently I have had the joyous occasion to have several days on little to no headache. I still have the nausea and pressure in my head, ringing in my ears, but that weighty headache let up. I simply can’t help but think that my brain is plotting its revenge on my for not entertaining the normal amount of pain. For me it has been nice to go to church and not fake smile (much) and enjoy a day of pedicures and shopping, even dress up to go to therapy. It hasn’t even really mattered that other things hurt, the headache subsided.
Sure as the sun will rise, I will get another headache. Probably sooner than later, but hopefully later because life is pretty nice without that burden. Now, I know this probably sounds kinda wild coming from a Christian as I should probably be believing that God is going to miraculously heal me. If course I believe He can. Still, if I am more valuable to the world in this state of being, then I will use it to spread awareness and help other people.
I suppose my point is that anyone can be afflicted and we shouldn’t use religion to brush away common sense or medical treatments. We are each free to make our decisions, but we have no right to dangle carrots in the faces of suffering people. Religion is not a baton to beat someone who is down. The ultimate goal should be to love and encourage one another. Most importantly, to listen to one another so we can now what they are feeling.
I know when I am feeling a headache coming on. No one has the right to question that, or my faith, or anything. I have spoken to so many people who have walked away from church or organizations because they were not heard. People spread their own ideas of how you can be healed or what you are doing wrong and it feels terrible to be seen as someone who isn’t even helping herself. I hate it. I know other people endure it and probably hate it too. Just know, it is ok to educate people and to walk away if they choose not to learn. It is ok to stop someone mid-sentence and let them know they are too far across a line already. It is ok to stand up for yourself and straight out tell people exactly where they are messing up. You are not inferior to anyone, so you are not required to stay and listen to nonsense.
You know your body, and if it is showing signs of being overworked or tired, listen to it, not to people. These are the same people who will complain about their own back when you ask them for piggy-back rides because you are tired or in pain. They want the best for you but they don’t know so just shut them down and tune them out. It’s healthy and they can maybe learn about you with the added bonus of being quiet.
If you are the one scratching you head and mumbling about how you are just trying to be helpful, just relax. The most helpful thing you can do is let your friend who is hurting talk and don’t act like you know more about their condition than they do. Be a friend, not a doctor. We know your intentions are good, but your degree in anything but neurology disqualifies you from giving cound medical advice to someone who has had brain surgery.
I know it seems harsh, but the reality is, being up front with someone in the beginning is easier than trying to fix it later. If you have a worthy relationship, this will not harm it, but it will make it better because you will understand each other more. We should grow in our relationships, and that can hurt, but it is worth it!!
All this being said, I feel the telltale heaviness inside of my head that precedes a headache. I expect I will wake up with one but I hope that is not the case. If it is though, I have had an awesome few days and I can live with that.
WE MADE IT! At least in blog form (right??)!
This is the last step in all kinds of grief (to the best of my knowledge at the time of writing this) and in my *PERSONAL* opinion it can be the most difficult. See, I am not really at this step yet with what I am going through. Maybe some things I have come to accept, but as a whole, nope.
So how do I know how hard it can be? My brother was murdered when I was 18, I was stuck in my grief for about 15 years. I got through all of the rest of it, but I had to be able to accept a few facts before I could move forward emotionally:
That is only six things. I lost myself for a long time trying to wrap my head around those six things. That is a long time for six things.
With medical issues, I expect it to take time to come to acceptance of all that has gone on and may never end. It isn’t as final as death. It can be a lifetime of being in multiple stages of mourning my losses, however, the goal is to spend just as much time celebrating the wins. The positive attitude is what is going to keep me getting through each day until I can accept all that my body has to offer, good or bad.
If you have been blessed to make it to this stage you deserve a standing ovation. I can’t imagine what you have gone through to get here, but I do hope that you spread encouragement to those who are in earlier stages of grief and can’t seem to move forward. We look to you as a beacon of hope to us all; that we can learn to accept everything that has happened to us and live a quality life without dragging the weight of loss around.
I just want to thank everyone who read all of these posts, or even just this one. My goal is to spread awareness about Chiari Malformation and whatever else I can help be noticed for the community of people who aren’t “normal” in the brain, body, or both. We may look nice and act proper, but we often suffer behind closed doors or even in public when someone must make a comment about “how” we are. We are people with feelings, family, friends, bills, pain, love, humor, thoughts, ideas, opinions, style, and so much more. Some of us have to figure out all of that all over again, but we appreciate the people out there cheering us on and encouraging us to do more than we ever thought possible.
Again, the article I got this from is here and I used it as a basis for my drawings and for this idea in general. Let’s talk about out mental health so we can be healthy. Grief is healthy when completed and not stalled. If you are having trouble with loss, talk to your PCP or therapist, or someone in your support system. There are a lot of ways that help can be accessed and we need to use the avenues that have been opened to us so we can help ourselves and the future generations. No Shame!
One of the issues that follows me in life is the sudden ceasing of my leg’s functionality. I can just be standing there and it will just stop working. More often it is when I am turning while walking. My body just cuts off contact to a limb and boom, I have fallen. It happened at church one day and I was so embarrassed because people saw, nevermind that I hurt my butt and arm.
This is just one of my medical mysteries and as time goes on, it is just becoming a part of my life. I love the idea that I am now going to a brain health clinic and they know all of the different disciplines in neurology and are not afraid to use them. They also aren’t afraid to say that there is the possibility that this will never be solved.
I suppose I have come to a place in my journey where that isn’t as scary to me as it was before. I am figuring out what my limitations are and with the new therapies I will be going to, I may see some improvement in my quality of life. In the end, I want to be able to enjoy my life and this place seems like that is their end goal; to bring quality back to life.
So, remember that you are not your illness and that there is joy to be found even on the days filled with pain and despair. You might have something going on that causes you to be embarrassed because you can’t control it. It is ok to have a multitude of feelings about it including lots of bad feelings. That is normal. At some point, if you are able, face those fears and ignore the faces and reactions of other people. Eventually, you may learn to just laugh at yourself and accept that in some way you will never fit the “normal” standard.
It’s also ok if you don’t want to show the world your private life and so I can respect trying to minimize the issue and make it unnoticeable in most cases. However you choose to handle it is fine as long as you deal with it. Don’t let it be a hindrance to you in pursuing your goals and dreams. Just be open to being creative because you might have to make some adjustments on how you achieve your goals, but you can do it.
I feel like I am at this stage in most places but I am not fully here yet. I do not yet have a definitive answer about my memory or some of my physical issues, so it is hard to set up rock solid goals at this point or know what to plan for in life. Therapy has helped me learn to see this is a different way though.
The important thing I had to understand is that I am not defined by my abilities. This is still hard to swallow some days, but it is important because if I feel worthless or useless, then life isn’t really worth living. I am neither worthless nor useless, I simply have had to learn to integrate other tools into my life to help me. As I go through the process of reevaluating my life, I am more concerned with people than things, quality than quantity, and love above all. So, since I have value that I can add to the world, what role will I play to do that?
First, I am a mom. I am not the best mom in the world (probably). I forget a lot. Still, my daughter is my heart and I want to be the best mom that I can be for her. I love her to pieces, but my memory isn’t strong enough to keep her on track at school. So my whole family helps me. Now, “Mom” is a little different, so the role I play as primary parent has changed. We get through it.
I am a minister at my church. I have had to change how I do things there so that I can still be effective and of service to the church. I don’t mingle as much as I would like to because people will hug me too tight or be wearing too much perfume, but I try to make sure that I call and text and keep track of people so they know I am thinking about them. I still plan funerals, but I always make sure that I get everything double-checked. I have had to shift some of my responsibilities, but the only role that got taken away was ‘worker’. I like the role of being a provider, but even that has to take a back burner for now because in its place I have to be a patient. That is almost a full time job and it is more work than one would think to juggle doctor appointments.
Goals have also changed drastically. I had hoped to graduate with my Bachelor’s Degree in Music Therapy. Now I go see a music therapist. When it all came crashing down and I felt like I had nothing left the goals disappeared. My means for reaching the goals I had set were gone. Setting new goals without knowing what I can and can’t do is hard. Again, therapy came to the rescue. Reevaluating goals in THIS case means figuring out how I want to feel about my role in my treatment. It is my goal to be an active participant in every step of my treatment and to advocate for my treatment. Beyond this, I want to be an advocate for Chiari Malformation and Mental Illness. A house? Who knows?! I need to get well first, that’s my goal.
This is an exhilarating place to be because hope is finally on the horizon. I can’t make out its exact shape yet, but there is something there worth striving for after all this time of feeling helpless and astray. I think this stage will probably last a while. As I learn new information I am becoming more familiar with how to reevaluate all of these things because this process will take time and I have to remember to keep my mind flexible enough to find ways to overcome the obstacles that seem insurmountable.
If this is where you are, CONGRATULATIONS! You have made it very far in a process that so many people lose themselves in. Grief should never be the destination, but it is a journey to be respected, explored, and then left behind to draw wisdom from. I imagine other people might be in this place for a while too because it takes time to establish your new role in life and the goals you wish to achieve. It can take a lot of experiences and thinking to reevaluate life and to gain a new yet comfortable perspective and establish a new normalcy.
Definitely take you time with this stage as it will develop your new foundations and enjoy the freedom of creating a routine and lifestyle that work for you. In time, you will pirouette to the last stage where you will find the solid footing you have been seeking.
All of those things I was depressed about and had anxieties over? They have manifested into many questions about how I will define myself in the future. With the bitter portion mostly cleaned out I am left with pieces of myself that don’t seem to be who I was.
I picture it like broken glass that spent time being smoothed by sand and time. So many abrasive feelings had to come out and the changed the pieces of me that were left. Time has left the glass warped and changed. None of the pieces fit back together like I remember. I often feel like I am living in someone else’s body. Really, I have to internalize the idea that I am free to choose who and what I want to be within my limits. However, I have to stop being scared to be something.
I am afraid of being broken again. I have put myself back together so many times, but this has been the hardest journey of my life. This is the one that seriously made me question the value of living in pain. I still struggle with that question when the pain is very bad. At that moment, I am a person who likely can’t even feed herself. Is this who I will be?
I struggle with wondering what I will be able to do to earn an income or if the issues I have render me disabled, what will I do with myself? Right now these are possibilities of who I may become. That’s scary stuff. I have always acted and done things KNOWING who I was. I am not the same lady from a few years ago. I have lost some physical ability and sometimes my brain goes on the fritz, but I have gained wisdom and patience so I don’t even approach things the same way. So does that make me untrue to myself? Why do I hold such allegiance to my former self?
She commanded power and respect. She was not meek and kind. Not really forgiving or tactful. I don’t feel strong life that anymore. I don’t feel like a fearsome woman with laser focus on what I want. I just want everyone to love each other and be nice and thoughtful and respect my personal space. Who am I?
I am underdeveloped right now. My whole life has been altered and I am being created with my new life. Piece by piece, day by day, trial by trial.
What keeps me so hopeful is that the change is taking place. It is a long process, but I am moving forward and I am sure after I work out some more anxieties and other issues, I will be able to see who and what I am being crafted into and what my purpose is.
Should you find yourself on this stage, nothing will feel familiar. You might have to improvise a dance, but you may learn that you had a skill you were unaware of. This stage is frightening and the house is empty except for the shadow of your former self peering at you from off-stage. I just tell myself, I can’t dance like you (old me) anymore, I have a new dance, and that’s ok!
This stage can be scary but it opens you up to lay the groundwork for healthy recovery or living. You deserve to ask yourself the questions and you can try to figure it out yourself or seek professional help for dealing with this confusing stage. You will strip your emotions and idea of self to the core and from here you will spin onto the the next stage in this progression.
Was there ever a more perfect pair? In my personal experience, depression digs the rut and anxiety makes you afraid to get out. I have spent my life defining myself by my ability to accomplish. The accomplishments themselves were not nearly as important as the ability to do it. I COULD work on a car, I COULD landscape a yard, I COULD clean a pool, I COULD take 9 classes and work and volunteer and be a mom all at the same time.
As the realizations about my mental, cognitive, and physical status began to sink in, I felt like I sank into the earth. Not able to do the things I was used to being able to do, I no longer felt useful. The things I love became things I didn’t want to talk about or hear about.
I got tired of hearing that my friends were getting married, buying houses, going on vacations, living their best lives (*through my personal lens, which was very out of focus*) and here I was dealing with headaches, unable to use the bathroom normally, and unable to get through the day without multiple naps.
It was like the blackness that swallowed me in anger left me bitter and depressed and unable to see value in myself. Then my eyes were veiled in bitterness and I saw value in nothing anymore. Making it to the point where I felt like I was just existing was the lowest place for me. Just the disappointment of opening my eyes everyday and coming back to the realization the ‘this is my life’ was changing my thought pattern and things were getting dark in my mind. I couldn’t fix anything going on, so how was life worth it anymore? So, I decided to seek help and get a psychologist and psychiatrist.
If intervention had waited longer, I might not have made it.
Interestingly enough, my psychologist focused on my anxiety. If I was depressed about something I could get specific about, then she would turn to the anxieties surrounding it. I have (as of writing this) been in therapy for 10 months and the one thing I always try to carry with me from therapy is that I am prone to try to repair and repair instead of looking for a new solution or viewpoint. I am anxious to know if my health issues are going to be permanent but if they are, so what? I have to learn to live with them. This is obviously over-simplified, but I am always willing to at least try the methods and tools my therapist gives me to help look at my thoughts from multiple angles.
One way I do that is by writing. If I am very anxious about something I will write it down and read it to myself and imagine one of my friends wrote it to me for advice. Seems silly, but it works for me because I often feel like other people deserve better than I do, so it helps me put my thoughts into a more realistic perspective. I deserve to be happy or safe or cared for just like any and everybody else.
Still, I have plenty to work on in therapy and I would not say I am totally out of this neck of the woods. As my treatments change and we test and get answers, I will have other woes and fears.
Many people don’t realize that you can go through this whole grief process with every symptom (I have about 17) and after every disappointing specialist (I have about 14) because each new thing takes something else away that you now must mourn. The feelings overlap and mix and can be overwhelming. My support system and my medical team all keep a close eye on my depression and anxiety because I won’t be able to improve if I lose hope.
The worst anxiety I have is that I will have these symptoms forever. Headache and nausea for the next 20 years is an unbearable thought. However, I currently temper it by telling myself that I have made it this far without answers and whatever happens I have my family and my faith and I can cross some bridges when I get there. I only have to worry about my headache today. Tomorrow will take care of itself.
I am not saying these are the universal experiences of anxiety and depression. I only know what I go through. However you’re feeling it, I encourage you to seek professional help if you have feelings of depression and anxiety. At least find someone who you trust to get your feelings out so they can be validated. Depression is not a ‘phase’ in life, it is a stage that must be addressed when it is where you are. Same with anxiety, it is a stage that needs to be addressed.
If you find yourself being the third-wheel of this strange pas de deux, try not to get caught up in their dance. The spotlight burns your soul and turns you into a shell of your former self. Spend your time on this stage and figure out what is the root of your depression and anxiety and come up with a plan that will restore peace of mind to your life. You may not get the diagnosis you desired, but there are people who have it worse in some way but have rediscovered the joy of living. I want to enjoy my life again and I want you to also.
Don’t get me wrong, I felt angry about something at every stage and on a bad day, that anger is right there to hold my hand and seethe me. Going through accepting your newly downgraded body/mind while dealing with the deficiencies of this magical gift is definitely anger-inspiring.
I thought about this young man and just the most intense rage would swirl within me slowly growing and swallowing everything. In my head, his family didn’t even have the decency to have adequate coverage considering how often their son got driving violations. I was also angry with the system about this. How does he have a driver license?
The anger grows.
When I wasn’t able to hold things as well anymore it changed and became a constant companion. Every time I fell. Every time I stuttered. Everytime I I forgot what the conversation was about. Every time I just couldn’t get up. Everytime I had a painful test. Everytime I got no answer.
The anger can be consuming. Many people get stuck at this step of grieving and it isn’t hard to imagine why. Someone else changed your life forever, yet they get to live a normal life. He got some traffic fines. His parents’ car insurance probably dropped them.
The anger has no rationale.
People in their early 20’s are just idiots. You shouldn’t be able to drive unless you can parallel park between 2 dimes with only 2 movements. I should set their house on fire, bet they wouldn’t like how inconvenient that is (*NO ACTS OF ARSON WERE COMMITTED*). I should sue them for the car their son hit me with.
Misdirection is a best-friend of anger. In the end, I was angry that I lost all of my time spend at school, angry that my body felt weak and fragile for the first time. angry that I could never horseback ride again, and so many more things. I was angry because I felt like he took that all away from me. No apology, no offer to help, he hit me, drove off, and left me to a live a completely different life.
I still have my days. I have had to come to terms with each angry thought individually. They all deserve to be addressed. Yet, some days I have EVERY SYMPTOM and my body is revolting against me. Things hurt in my head that I don’t think people were made to experience. Luckily we are built to endure even the most torturous pain inflicted upon us, internal and external.
I have a lot more peace about the accident and it’s outcome since I began therapy and have been able to work through many issues. Still, I am human and at some point I will be angry. The key is controlling it better and better each time so I can thing through anger and not have such a negative reaction to things that upset me. There is a better way, we just have to be willing to learn.
If you are angry, I want to let you know that you have every right to experience the emotions you feel. It is unhealthy to push your feelings down so please seek the counsel of a therapist or friend of whatever allows you to safely express yourself. We all want to be strong, but our feelings are valid and deserve our attention, especially when they cause tension or stress.
I know how hard it is to break up with anger, but it is toxic. Be angry but continue to move forward as this stage turns into a macabre venue to spend your time if you linger. Learn to forgive, learn to let go, remember, it’s ok to be sad.
From here we move to the next stage that no matter how hard you practice, it’s wrong. That’s ok though, it’ll be over eventually, right?
Now I went to God and made my petition known. Not only was I asking for my old life back and none of what I was going trough, but I would read my Bible even more than once a day, and do more Bible studies, and teach more, more conferences, more Duolingo Spanish and Italian every night, Lumosity everyday, go to the gym, cook everyday for my family and other families, just please give me my life back. If not my whole life can I have no headaches? Or can the nausea go away? Can I stop falling? Can I just write more.
One thing I feel negatively affects a lot of people is that they feel like because they are Christians or “good people” or any religion is that many people are made to feel like their illness or condition is somehow their fault. Lets be honest here, you can be a Christian and get cancer. So can an Atheist. Neither deserves it more than the other. Sometimes people get cancer and cancer doesn’t care your religion, skin color socioeconomic background, or any of that. I do not struggle with feeling entitled to better health because I am a Christian. However, I still want the pain to go away, and that is my point I guess. My beliefs have not blinded me to science, I knew there was a chance I would not recover well, I just chose not to believe it which made getting through this process more difficult.
Sorry, just trying to ramble for understanding sake, but might not be working.
Anywho, at some point I ran out of things to bargain with. At the worst of times I pleaded like a dying man for comfort and peace. It’s a hard place to be because when it hurts so bad you think you might die, surprisingly, comfort and love become just was important as medical intervention.
I don’t want to leave out desperation. First, the desperate thoughts come. Here is a list of some of my own:
I acted upon none of these thoughts. See, when I was in that place in life, those thoughts in parentheses were brought to my attention by the people I love. I think this is why it is import to have a support group around you who you can speak freely and frankly to without judgement. That does not stop the thoughts or change how I feel, it gives me perspective so I can see my thoughts from someone else’s eyes. There are times I say what I am thinking out loud to my family and just hearing it lets me know that it is probably not a positive or productive thought.
It is my body (and not someone else’s) so I have to keep dealing with it’s failures. Coming to terms with the fact that there may be nothing that can be done to “fix” me is accepting my limitations, my perceived inadequacies, and loving myself in spite of the changes I have undergone.
So, it’s like finding a unicorn. You really want to, but when you try, it gets difficult quickly.
From time to time I revisit this stage. As a musician, I tend to crave new stages, but the familiar ones are so easy to glide onto. The show must go on, so off I prance to the next stage that will grace me.
I was nominated with for a Liebster Award and I am a little surprised it wasn’t for my actual long-form blog! I want to thank Mom Life With Chiari for the nomination. I enjoy reading her blog because it’s filled with the love of a mother, the talent of an artist, and the pain that life sometimes brings us. Most of all, she is an encouragement to me as a mom and as a writer and always lets me know I am not alone in this fight. I am honored to be nominated, thank you!
For more history and the Official Rules for the Liebster Awards please visit the page here. But basically, someone will nominate you and they will have 10 questions for you to answer and them you want to put 10 random facts about yourself. Then, nominate 3 bloggers who influence you and come up with 10 creative questions for them! However, official rules can be found (and maybe more easily understood) at the link above.
1. What’s your advice to a person thinking about blogging?
Go for it! We get these ideas about how something should be and whether we can fit into a mold, but we are so much more than we imagine. Blogging isn’t about eloquence or loquaciousness (although both help if you are writing about fancy stuff), it’s about putting your thoughts and experiences in front of yourself and in front of others if you choose. Go for it. The worst that can happen is that you find you don’t like it and you journey forth to find an activity that allows you to express yourself comfortably.
2. When and why did you begin to blog?
I first started blogging years ago when I worked on cars. I stopped, but my when I was diagnosed with Chiari Malformation I had such a hard time finding people’s everyday life experience post-op that I started The Life Of A Music Monkey and that got me through a lot of lonely nights after surgery and it gave me hope that someone else would read it and not feel lonely too. The blog I was nominated for came about when I rejoined society and people started saying crazy things to me like, “have you tried kale?”
3. Do you think there is a line to be drawn with blogging, when do you keep your personal life personal?
I feel that a blog should be what you need it to be. In my own blogs I tend to share what many people might consider to be ‘too much’ but I usually leave my family business out of the blog because it involves other people. I tend to not mention my doctor’s names or office names for privacy. I can share everything about myself, I have no shame, but I try to afford the people I interact with a little privacy. So, many of the people oin my blog have had their cartoon identities changed.
4. What have you recently done and loved because it made you feel ‘young at hear’?
My car case finally settled!! So, I went to the salon and and treated myself to a new cut and mermaid hair with teal, emerald, purple, blue, and magenta. Everytime I go by the mirror I smile because I feel like a beautiful unicorn mermaid princess. However, I am a minister at church and my pastor has not seen my new multi-colored hair. Pray for me, ya’ll!!
5. It’s summer time, what plans do you have?
We have a pool so I envision many lazy bbqs. I am from Las Vegas, so I am doing a staycation with my sister and probably taking a road trip. I have a lot of therapy appointments (regular, OT, PT, music, meditative) this summer and a few neurologists in different disciplines to visit, neuropsych exam, and a crown on my tooth. Yay, adulthood!
6. What’s your favorite color and why?
Blue is my favorite color. I think that it reminds me of the ocean and sky as a child. Looking out I remember looking out and seeing the horizon and thinking that while the sky and the ocean were both blue, they we beautiful, each in their own way. Moving to the desert, I miss the water, but the sky is almost always a clear blue that is just amazing as it changes through the day. Every shade is beautiful, even the velvety blue midnight sky.
7. What do you most struggle with?
I struggle most with losing my ability to work and be a proficient musician. I have lost important pieces of myself along the way. I hope I can eventually find them.
8. What does it mean to be ‘in love’ for you?
I have never been in love, so I am not sure. I imagine it is that same magnetic need to nurture and protect like with my daughter, but more intense and deeply intimate emotionally. Maybe I will find out someday.
9. Are you a morning person or a night owl?
I am an owl-lark. I go to bed at 2 am, I am up drinking coffee at 6am, but I take naps during the day. My body works on a weird schedule.
10. Do you like tea or coffee?
I liken this question to “which child do you love more” and it is very difficult to answer. Coffee is like a warm hug on the inside, but tea is like the reassuring embrace of Mom. I feel that they are both superior in their own way… but have you tried Crio Bru? Puts both to shame.
1. If you could pick up and move today, where would you go and why?
2. Where do your blog ideas come from?
3. If we all had to blog with pen and paper, would you still be blogging?
4. If you could transform into any one animal at will, which animal would you choose and why?
5. Do you have a set amount of time that you spend on your blog?
6. Do you have a blog ritual? (Mine is a bottle of water, a cup of coffee, and Twitter open so I can say crazy stuff.)
7. What is your favorite meal? (in detail, please)
8. If you could end one problem in the world, what would you choose and why?
9. How do you relax and unwind?
10. Who has been a positive influence in your life and how do you plan to pay that forward to the world?
One thing I may not have previously pointed out is that we often go through shock before we make it to grief. They are very different (*IN MY NON-MEDICAL OPINION*) because shock is the immediate response for most of us. We tend to handle it different ways in different situations. For myself, I am usually able to stay calm and rational until I no longer have to be responsible for a situation, then I fall into pieces and hyperventilate and become quite useless.
The day my PCP told me I had to have brain surgery, I kept it together in the office, although she could see I was upset. I walked to the truck as giant tears welled up and poured from my eyes, and then I got in, shut the door, called my mom, and though the anguish of a thousand souls I told her I had to have brain surgery and soon and I was scared and I released every anxiety and fear. She got me quiet long enough to let me know that she was on speakerphone and my daughter was in the car. I immediately felt horrible. My daughter had never experienced me in that state of mind and now she knew it all as we were all on our way to her performance. We went, I watched her perform. I stepped off to the side and called and told my job to put in for disability, and that was the last day I worked. Then, I went home with my sister and cried for three days straight. All the time. All day long. All night.
That is shock.
It wasn’t until about three months after surgery that denial became a thing. We noticed that some things weren’t going back to normal. Still, I am a strong woman, I have made it through so much, I just figured I would have to work harder to get better. According to statistics around 80% see improvement after five or six years. So, I am going to get better. At my six-month post-op, my neurosurgeon was concerned enough to recommend I go to the Cleveland Clinic because something wasn’t right. Physically, everything healed as it should, but the memory and cognitive issues concerned him after six months with no improvement. This was followed by a steady decline in physical ability, memory retention, focus, and cognitive function.
I then bowed out of stage one and hurried to the next stage in my journey.
The contents released in this series were inspired by this article: The 7 Psychological Stages Of Chronic Pain which I found last week while surfing the net (dig my lingo, guy) looking for how different types of losses cause different types of grieving. When we lose a loved one, we are faced with the finality of death. It is often a hard reality for most of us who have experienced the actual passage from this life. Time usually helps these wounds close over and they become tender spots in our hearts. Memories that can bring back tears and smiles.
When we lose our home or job or car we often feel violated, ashamed, or helpless. I have lost all of these things and they can bring alone a grief that is very dark and scary in the beginning, but as life continues on and new opportunities arise we make it through the ending part of the grieving process and begin fresh again.
When you lose your memory the process becomes more challenging. When you are in chronic pain the process becomes longer. When you have a degenerating disease it just becomes a mess.
For me, the memory loss is awful because I am constantly being reminded that I forget things and it is like I am in a constant state of being shocked about something I already knew but forgot. I don’t know how often I tell people the same things over and over.
The addition of chronic pain makes the anxiety in my life miserable. See, I could be having a fairly painless day, but I know it’s coming. Maybe a day, maybe a week. I am going to have an amazing headache. I know in my heart that it is coming and it’s hard to tell myself to just enjoy today. I feel like I need to prepare to feel the wrath of the Palm of God pressing the crown of my head onto my neck. Then, like yesterday when a pre-headache symptom appears, I am just counting the hours until I am debilitated.
My body hasn’t died. My body as I knew it and loved it are simply no longer present and I have been travelling a river of tears trying to get back to a dream. I think my old body would want me to learn to love my new body and take the time to explore it’s bells and whistles. It’s hard. I just don’t know what I am or who to be. That’s ok. If this sounds kinda familiar to you, I encourage you to read and comment about your experiences over the next 7 posts. It honestly is nice to know we are not alone.
After the gnarley headache, the nausea is the worst symptom I experience on the constant basis. It is usually low level, but if the weather changes or the headache increases, nausea will shoot up and become THE ONLY THING THAT MATTERS! My daughter is hungry? NAUSEA! Front door unlocked? NAUSEA! House on fire? NAUSEA! LET ME LIVE!!!!
For most people it is a feeling they may have for a few hours or days, a couple weeks if you are pregnant (unless you are me, then 40 weeks) but for me it has been over two years and really, I am sick of it (no pun intended, but good for me). It’s that feeling of sick RIGHT before you actually throw up but I just don’t always throw up. I pray that I won’t as it makes for a terrible headache/vomit cycle that can get out of control quickly.
The worst is when I have a day planned and NAUSEA hits me. It is paralyzing. You don’t move unless it is to a more laying down position. I lay there thinking about the things I was going to do. Some things are only available for a time like dinner with friends or sales, some things I can do later, but the worst things are the ones I have planned with my daughter because she gets the short end of the stick. She often ends up supplying my ginger ale and ice and ice packs.
I want to be able to do the things that I plan but I am at the mercy of a body that is kind of confused right now. Most days I get through it, I ignore it, I get ginger or drink ginger ale, but some days, nothing but meds can cut through the nausea and the meds come with their own set of problems.
So, if you know me and I tell you I just don’t feel good, that is actually code for, I could throw up at any moment. I am just being polite.
The thing I have begun to realize about anxiety is that even in the same person, it can manifest itself in different ways. In myself it is often a stream of depressive and negative thoughts that just get worse and more outrageous he longer the cycle continues. Or, I will cook. I will cook for hours and days, all sorts of meals. Way too much for my family to eat. It is a physical show of anxiety. If I don’t have a headache, I will go to the gym and give all of my frustration and anxiety to the weights.
Still, at times I get carried away with my anxiety and we go somewhere off the deep end for a while and it takes some time to get back to reality. It happens. I work through it in therapy, and if you check out The Life Of A Music Monkey you can see my Monkey Countdown where I am working on getting my anxious thoughts under control and turning them around. Everything is a process.
So, don’t be too hard on yourself if you have a day where the negative feelings seem to be winning. You are still an amazing person with the ability to try again and win the fight. I am still on the circuit, I am no champion. I have not defeated the darkness and saved the kingdom. Some days, I just sit in the forest of despair and eat guilt berries, just like everyone else. Eventually, I get back to the task of fighting the battles and winning a bit, losing a bit, and learning a lot in the process.
This is my next imagining! I think this would be a good fit for me if fantasy could become reality. I LOVE the forest and it has always seemed like a magical place to me. The wind sounds different. The air smells different. There is so much that is particular to the forest and I enjoy my memories of days spent running down sun-dappled trails and living my best life.
As an adult, I don’t live in an area near the forest, I live in the desert and I don’t know if there are desert pixies. I imagine it must be sand-fairies or desert ogres. I need that humidity that only a large gathering of trees can provide.
Notice my wings are made to mimic the leaves found in the forest and help me to blend in to my surroundings. Also, my stick arms and legs are green for added camouflage. That stuff falling from me looks like pixie dust, but it is actually pollen that I got all over myself because I am a messy eater and I get overjoyed at the abundance of the forest. Eventually, all of the pollen is gone and I don’t look so magical, but you can see traces of it around my mouth and on the front of my dress. Some things don’t change just because it is fantasy!
One of the scariest things to learn to deal with after surgery was that I was no longer on my “schedule” but I now lived according to my body’s needs and doctor appointments. I tried desperately to cling to some type of schedule (I still do, like a fool) but it was in vain. Remember having to go to a doctor appointment and then wanting to take my sister out for lunch. By the time our drinks got there my body was slunched in the booth crying out in pain. We had to get the food to go. I felt so bad. I wanted to take her to a nice restaurant and my body was not having it that day.
Now, there are certain things I to on schedule like take my meds. I have alarms set so that I don’t forget. I spend enough time each day drinking coffee because so far that is the only thing that stimulates peristalsis so I can get things moving in the morning. (poop, if you haven’t figured it out.)
Sometimes I will be having a lively conversation and then I need to take a nap now. Not in a few minutes, not later, right this second I must get to my CPAP and sleep. If I don’t, I become crabby, like a mix between an angry 2 year old and a crotchety 87 year old. I am not pleasant at all. God bless my family for putting up with this mess of a woman.
Often the clock changes as the needs of my body change. I have been having a lot of headaches recently and no doctor appointments, so there are a lot more naps on the clock and reallys, a lot more blogs as I try to get ahead in preparation for my visit to the Cleveland Clinic. I suppose that by the time this publishes, I will have already visited and will be drawing stories about that.
Love your body. I mean take care of it. Listen to it. Follow it’s instructions (unless they are murderous, then see a therapist). It will share it’s needs with you if you are willing to listen and give it a chance to tell you. Remember that it’s needs will change and grow over time and that is normal. That is life.
*Warning!!! This post contains the word poop several times used in several ways. If poop scares you, that’s strange.
The hidden life of chronic illness can be one filled with horrors unimaginable. I had to see a Gastroenterologist because sometimes my body won’t poop. The poop is there, I explain, but my body does nothing with it, no urge to go. Then all of the sudden, I have 45 seconds to make it to the nearest restroom. There is no warning, just the full strength peristalsis of my colon gone mad with power.
Oh, but once the madness begins, it only gets worse. First it feels like my body is turning inside out. Then we get to the best part! Everything just stops! Right in the middle of the process, my whole digestive tract gives up and plays spades.
Just push, you think, right? HAHAHA, you’re so cute. That is a Chiari problem. That can put a little too much pressure on your brain stem and think parts and you can have a bad reaction. So a little push here, a little white-out for a second. A bigger push there, I have become sick to my stomach, taken off all of my clothes, and am on the verge of blacking out and making an awful mess. (Ask me how I know…no don’t. It’s a sordid tale)
So, the Gastro asks about my diet, I tell him I eat plenty of fiber, I record my water, I eat vegetables and fat. I also tell him that this is all much worse when I have a headache. With sad eyes he looked at me and told me that there was nothing that he could do for me. Any medication he prescribed would make something else worse and really, the problem sounded neurogenic and needed to be looked at by the Cleveland Clinic because this was a neurological issue that happened to affect my digestive tract.
I have now heard this many times from many doctors and it really puts a lot of pressure on these doctors to find a cause for what is happening all over my body. As of the writing of this comic I have 39 days. When it is published I will have 6. I am wondering everyday if these doctors are good enough to really help me, and my faith says they are.
I know it sounds crazy, but I just want to poop like a normal person again. Like I did before the brain surgery. Like I did in the Before Time.
Check out The Life Of A Music Monkey
I don’t live much in a fantasy world, but I have loved unicorns ever since watching Legend back in the day. I also watched a lot of The Last Unicorn. I could always picture myself as one of these magnificent creatures; endowed not only with the grace and strength of a horse but with magic in the form of a breathtaking horn set high upon it’s regal head.
Yeah, very into that scenario in my head. That’s not a cutie mark on me, that is the brand from the music farm that I live on where we all sing in harmony and our magic is harvested to make pop icons. Not how I thought I would spend my existence as a unicorn, but it is good money and the hours are awesome so I can take care of my growing filly while earning some carrots.
I should have given myself wings and been an alicorn, but it’s too late for all that now. Now we just look at this picture and all be a little thankful that I am not a unicorn as I see them because I look kinda creepy, like “I would take you to town, but I would also go through your bags while you are sleeping” kind of creepy.
I imagine the freedom of running through open fields can’t be beat, unless you are an alicorn and can also fly. So, there’s that. I hope you have enjoyed Michellicorn: the power of awesome!
Don’t forget to visit The Life Of A Music Monkey my blog on life with Chiari behind the veil.
Ya’ll know 2018 is the year of self-care. So, you see, I try to take time out of every day to to do something nice for myself. Sometimes it’s a good foot bath or a nice nail job. Other days, it’s a face mask and drinking coffee while listening to some nice music.
None of these things give me superpowers or make me young and beautiful again, but they remind me that I am worth spending time on myself. I am happy that I will at least be hydrated and have smooth skin and good smelling feet. What else do I really need in life at this point? I can’t get anything, so I may as well care for what I have!
Even these blogs help me feel better about the life I am leading and how I spend my time. I don’t keep my thoughts for long, so I draw them and write them down. I will forget this and come across it later and think about how silly I am! It is worth it for the sake of knowing in the future that I have been working harder to get myself to a better place!
Please, take the time to do something you love. Something that benefits you and no one else. Fill yourself up with your love so you have plenty to pour out on other people.
Also, check out The Life Of A Music Monkey
I enjoy blogging and especially this comic because it is just a fun expression of my life. So, I like to sit outside at night, and last night I started imagining myself as random fantasy creatures. Here and there between my other posts, I will post my series of wild imaginings!
For 27 months my life has revolved around going to doctors, imaging, testing, therapy (of all kinds) and it has been a neverending schedule of this. It has been a couple of months since I went to a doctor aside from my psychologist and my speech therapist. I am waiting for the big appointment. The one I have been after for 18 months. The one I have been electrocuted for…several times. It’s only taking an
I am getting involved in some other volunteer activities and slowly trying to figure out what I can do, what I want to do, and where I want to be.
For now, though, I wait.
One of the areas in my life where I am quickly gaining knowledge is compassion. I was JUST beginning to think that I had a handle on it, but the further I get from surgery and the more normal (whatEVER that is) I “look”, the more I see where we fail each other.
Just because I look fine and I have not lost my intelligence or my moderate knowledge of things and stuff, people think I am doing great. Of course I can have a conversation with you about how a combustion engine works and ways to make it most effective with the least waste of energy, but I open the spice cabinet almost every times I head my coffee up in the microwave. Every single time I wonder where my coffee is. Then I remember, I am not heating it up with spices, I am increasing the temperature. Try the microwave. There it is. Or the day I was getting ready to go out and wondering why my boot felt so weird. My daughter brought me my boot and removed the glove from my foot. I laugh a lot at these events with my family because we are all scared of what they mean, and we don’t want to give up hope.
Yet people hear my witty banter and think I have no problems. So if I don’t look well, they ask, and I’ll tell you if I feel like vomiting, or my stomach hurts, or my head feels like it is in the process of a slow motion explosion. Then people advise me on what they think the best remedy is. You know my favorite is Kale. Apple cider vinegar mixed with water twice a day. Just give it all up to the Lord because by his stripes you are healed. (I hope my fellow church-folk didn’t think they would get away. Y’all the worst sometimes.) All of these answers I get without just a listening ear. Now, I just tell people I’m alive and go one about my business if I don’t avoid them altogether.
None of my doctors will see me right now, so maybe it’s a good thing that I am running into all of these people who know everything. We are waiting for the Cleveland Clinic visit because no one can fathom what is happening to my brain.
I know this though, you probably aren’t a doctor. More importantly, even if you are, people need comfort and validation during difficult periods in their lives. Stop giving so much advice and give some compassions, concern, love, attention, and care. It will help the people who need it so much more.
Also, check out The Life Of A Music Monkey to read about the highs and lows of my errday Chiari!
One of my issues in life is not feeling like I am able to do enough stuff. I enjoy filling my life up with things to accomplish. So, I recently had a conversation with a friend that I know speaks from the brain. I am not saying he doesn’t have a heart, but he does not let his emotions cloud his sound judgment. I went to him with my feelings, knowing he would give me back factual information and cut through the ambiguity of my emotions. while he said many encouraging things, the craziest one was to get a part-time job. My medical team and my lawyers would kill me. My body would give out. I don’t expect him to know all of the details concerning my condition, however it got the wheels turning, and THAT is what I needed from him. I am a woman of many talents and while many of my body parts are failing me right now, I have not given up the hope of going back to living a semi-normal life.
That takes money. While I languish, waiting for disability, I feel very useless. So, in his eyes, getting a job will fix some of those problems. Still, I can’t work by someone else’s hours or by their expectations of my body.
Then it dawned on me. I have been a business owner since 2010. I ended up having to get surgery on my nose and throat shortly thereafter and then the accident and the brain surgery, but I don’t need to get a job. I’m a freaking BOSS! Hahahaha.
He told me to figure out what I was still good at, I bet I can still do loom work and I would love to design a set of handbags. So, sometimes, you have to go to someone who sounds like they are being harsh (he never used a harsh or condescending tone, he is always very matter-of-fact and pleasant in delivery) to force you to take that really hard look at yourself and say what have I been missing? This person said this, this person said this, and how do I out it all back together? Well, I put it back together and now I am getting ready to reopen the creative doors of Haus Of Simeon and I am going to not get a job, I am going to create the job.
Have faith in yourselves, my lovelies!!
Also, check out The Life Of A Music Monkey because I am up to some fun stuff over there talkin bout Chiari and right now anxiety and how I am working through some of my scariest moments of anxiety.
I love to be clean, but Chiari and the Flu have me walking around like a two week old corpse with death breath.
“EttpzO1iGs0w” Hi! My name is Michelle. I have Chiari Malformation and I had decompression surgery. If you have never heard of Chiari, that is understandable as most people have not. It happens in about 1 out of 1000 births but it is not always symptomatic. So, when I tell someone about it I tend to have an interesting conversation. I decided to start making little comics about these conversations and I hope that it will help people to understand what they sound like from my point of view. More than that though, I hope to give you a glimpse into the life of someone who has a hidden illness and is just trying to figure out life. Stick figure Michelle and Chiari brain will help me tell my tales. I will introduce them now and stay tuned for Saturday, July 23 when they begin their journey.
The last few months I have been trying to build a habit of being habitual. Each month it is about a different thing, but it seems like my mind has done fairly well at remembering it needs to do SOMETHING each day, even if it isn’t sure what it will accomplish. I can say that in November I spent every day (except on when my daughter got stitches) writing and I wrote over sixty thousand words! Who would have ever thought that I would do something like write a novel? It is a collection of my days and events and memories. I just started reading it from the beginning and it is already weird.
What I learned is that I am able to apply myself for a small period of time each day and slowly finish a project. December is going to be a little tough because I will be making and uploading at least one video per day! If I can do this, then I think I will have more than proven to myself that I am able to be productive. I don’t feel productive, but I am doing things.
Still, in the end, I am very proud of myself and I feel like I have exceeded my own expectations and I haven’t had those feelings in a long time. I know I put myself into a box because I don’t want to fail but at this point in life, I personally have nothing left to lose. At this point it is solely about ego and how I would feel about myself as a person if I went out there and failed again.
At this point I finally understand that it really is about the journey. I could still be so angry inside and depressed. I have not tackled all of my issues, but I am glad to be able to smile again and I am stating to enjoy things again. Like, I took my daughter shopping for her Christmas gifts. I don’t have the stamina like I used to, but just being able to hang out with her and talk with her was fun. I miss it. I try not to think about it because I am content to hang out at home, but she enjoys going out (like teenagers do) and walking around and looking at things.
I am going to physical and occupational therapy now and doing it at home. I was supposed to start speech therapy but the lady was sick. That will start soon. I am in dance and being active as much as possible. I am like a professional superstar patient. I have embraced that I am part of the solution and I must do my part. In my head, I am on a mountaintop playing air guitar because I am awesome! We are all awesome in our own ways. We each have difficult obstacles to overcome in life. My hope is that everyone finds their mountaintop and feels the rush!
It has been four years since the accident, and three since the surgery. Between then and now I have had a certain set of neurological symptoms that keep deteriorating. I have had my concerns since the beginning but now it is center stage in my life and it is affecting me and my life and my family.
It’s a lucid madness that allows me to understand what is happening and also not be able to do anything but watch as my cognitive function fades and my memories disappear and hope that we can stop it before I lose too much. It is my living nightmare.
The neurologist is hoping that this medication that he put me on will help improve my quality of memory. I am hoping more than he is. Really, I think he is trying to see if my memory loss is following the same pattern as Alzheimer’s and Dementia. This is my theory as he was clear that we are doing a light treatment since we have no answers as of now.
No answers. I see him again in 4 months. In that time, we will see if there is improvement, no change, or decline in memory. We haven’t even touched on the seizures. We increased my valium to see if it helps suppress the nighttime seizures. Now we wait. We keep notes, we live life, and we wait for the new year to bring us news about my health.
This journey involves a lot of faith. Faith that God isn’t trying to drive me crazy and that He has a plan. Faith that my family will stick with me no matter how insane this situation becomes. Faith that my doctor has a gut that is correct that he has faith in. Faith that I am going to look at this situation one day and see every blessing that isn’t currently apparent to me.
Everyone’s journey is different. My hope for other people who suffer with medical uncertainty is that they will have the faith to continue on through their journey and bring to light all of the bottle necks, red tape, and other events that make this process more difficult, longer, and emotionally draining. Be the change that you want to see. Hold open the doors you pushed open. It is important that we support those who do not have the support system or voice to speak out.
I hope that one day we will have answers for Chiari Malformation and it’s many comorbidities, but until then, we are the advocates who have to keep the wheel of change turning and even speed it up.