Monthly Archives: July 2015

I get Botox.

I get Botox on Thursday. Last week I knew to check my calendar because I remembered, “ah, this is why we get the Botox.”

If you are thinking about Botox. Do not get advise from someone who quit after the first round. Like all medicine it takes a while to work, if the doctor sees no improvement after the third round they stop. It is expensive, but I know at least some insurances cover it and there is financial aid available through the Botox company.

The most important thing about Botox is the doctor. The angle that the doctor holds the needle will impact your side-effects and amount of pain, I know this from experience. I go to a teaching hospital and one appointment a recent graduate did my injections, he wanted more guidance on the angle of the injections. There was a big difference. If you are thinking about Botox, find a doctor who specializes in Botox and is known to be good at it.

The Botox did not take away my migraine pain or my headaches. It did not reduce my daily pain, it reduced my migraine pain by a smidgen and reduced my daily side effects of migraine by a significant amount. It is the only thing that has put a dent in my migraine/head pain. I remember the first time in nine years that I stepped outside and didn’t feel like I my head was going to beat itself out of my skull. That is why I am on Botox.

I got my first Botox injection in March of 2014. It is thirty-one shots around the head with a needle that reminds me of inline needles, there are about 5 of those filled with medicine diluted with saline. The doctor scrubs your forehead with the alcohol pads and then does the first set. Repeat. Repeat. Move on to the side of your head and behind of your ear (open and close your jaw please). Now across the back of your head right above the hair line. Finally, down one side of your neck and then the other. My doctor has done two different patterns of injections, experiences of injection sites do very. The severity of my side-effects were also different. The day he chose the different pattern I had a severe migraine and said the alternative pattern was better during migraine.

It hurts. The first time hurts tons more then the following appointments. The first appointment had me off my feet for a few days and hurting a few weeks. I could barely turn my neck and had issues moving my right arm because it hurt so much. But there was humor, I couldn’t move my eyebrows and on up. But after that it got better. The day of the shots and the day after the appointment I am sick. A few days to a few weeks my arm will hurt. My forehead will still get a little stiff, but not paralyzed. I get worn out easily, more so then before I started the injections.

Botox and pregnancy do not mix. If you are sexually active your doctor will do a pregnancy test before hand. I would just let them do it. Botox causes instant miscarriage.

My thoughts are a mess. Any questions from a patients point of view, leave them in the comments.

Note: I do not have any medical training.

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Filed under Doctor, pain

Dyslexie Font: Awesome

I found the best font to use for anything. It is Dyslexie. Dyslexie was designed for dyslexic people. On the website you can read how Christian Boer invented it. (http://www.dyslexiefont.com/en/)

I have a the type of dyslexia that the letters move and get jumbled around. So, instead of two letters being switched or a letter being upside down, I see the letters swimming off the page while randomly doing flips and playing do-si-do. Before I became ill it was always very slow, but now the speed is controlled by my migraines.

Mr. Boer achieved his goal. It makes it easier to read even when I am experiencing some harsher symptoms. I think the font is worth a try for people who need to be able to read while having minor visual troubles. None of these letters look the same. This font has made the arches and erratic spaces between letters and words that make reading difficult easier to overcome.

I would like the stress that I think it would more helpful with minor visual side-effects of migraine. It is not going to help if you are seeing in triplicate (I have been there) but if things are a little blurry I think it would help. Also, it could be a life saver for a dyslexic person.

It is free for personal use. The draw-back is that it is expensive for any other kind of use.

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No Spoons for You!

If Grandpa wasn’t standing there. If he had seen. If my surroundings had not suddenly collapsed. Or if we were not surrounded by family she was meeting for the first time. I would have  given my step-grandmother, the retired nurse, a piece of my mind.

She just wanted to see me smile, she didn’t know any better. Yeah, right, the nurse had no idea.

I experience allodynia all the time. It gives me extra little bursts of pain when I am touched. Usually it only presents on my head and face. She knows this, I told her the first time she patted my head like a good little child and the time she laid hands on me to pray. I wish she didn’t have the psychological need to touch people.

The family re-union began early Sunday morning with a church and memorial service (we remember all who have died since we gathered last). It was a nice service, Mom gave a good sermon, distant cousin did the memorial, and we sang/prayed. So, typical noise and light trigger fest that I was expecting. In-between the service and family meal, step-grandmother slinks over and bends over the pew in front of me. She grabbed my face and started patting it and squishes it together a little. Then she kept patting my cheek as she patted the bottom of my chin. I think my brain began playing a bit of impromptu soccer.

I must be really good or she sees what she wants to. Somewhere a thought boomed, smile idiot or every single person here is going to know you feel like crap and why because she will announce it to the 100+ people here. It was just me there, my keeper of the day was in  the bathroom. To my luck she says I love it when you smile..and then asked for my Mom. She did it to make me SMILE. I had to hurry and get myself back into check before I started to cry or the before extended family noticed.

I learned pained face can look like a smile. I can’t figure out why she would have stopped otherwise.

Smiling is something I practice. When I look into the mirror I try while looking at an old photo and get frustrated with myself. I watch comedies, read the funnies, and keep up with things I am suppose to laugh at. I practice. Smiling is a skill that healthy people take for granted, I did. I was that annoying person who smiled for no reason. I was often told I smiled too much or was too happy. I giggled and laughed easily. But now it’s hard. I can feel the vibrations of laughter in my skull. Giggling is tiring. Smiling is hard when your physical pain is so consuming. I was in acting before I got sick. So I can smile while engaged with someone, it takes effort but the smile can look natural. When engaged with someone I can even get distracted enough to make small smiles and soft laughter naturally. I have learned to laugh silently. My niece gets a kick out of it. It all takes practice and concentration. It might sound silly, but part of me is afraid that I will forget how to express happiness so I practice.

It is almost an insult to be told to smile. It is unkind to make someone feel like their best efforts to function in an hostile environment is not good enough. Especially by someone who knows why the environment is hostile. It is unfair to have to hold all the things you want to tell the jerk in because of what others think are okay excuses, her age, family status, grandpa, her feelings, she probably doesn’t remember, trying to show they care.

My real grandma taught me that it is more important that I go to these things then to put on a happy face or even interact with anyone. It is about effort and showing that I care. She said that I should pick the most comfortable spot and if anyone wanted to see me they could come to me. She would say that anyone who did not appreciate the effort of showing up wasn’t worth my time. Now, they didn’t have to come see me to appreciate my effort, they just had to respect the fact that I am a disabled person who needs control over my environment and can become overwhelmed by crowds. I am making a statement to you by being here. I am giving up all my spoons to be here. It might might end up taking everything I can muster today, but I wanted to be here. Grandma also said its okay not to go, don’t try to give out spoons you don’t have. It is like stealing, only jail is the hospital. When you don’t go it is their responsibility to show caring: we missed you, take care, there will be another time, do you need.

I do not understand step-grandmother. All she had to do to see me smile was to engage me in conversation. She does something uncaring every time I see her. I am told it’s because she cares. She violated the spoons. Grandma took years to teach my extended family a way to be around me without being awkward or fearful. Step-grandmother is announcing that I don’t meet her requirements, I do not cope with my illness well enough, I cannot function well enough to be presented in society. The time before she actually said that I am still sick because my mom, gramma, and deceased grandma did not care for me well enough. I find it ironic that in my immediate family I’m the nicest and most tolerant, so before we met her I was chosen to create that bridge of acceptance into the family for her.

I have not been patted on the cheek since I was a child. Grandma did it saying I was a cute rascal. When being treated like a five-year-old I really want to act like one. Five-year-olds are allowed to cry, be crabby, and whine when it hurts. They can tell people off and be the worse brat imaginable because of a boo-boo. Makes me want to be 5.

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Filed under pain, Spoon Theory, tolerance

Aggravation, Cigarettes.

I had one of my annual outings today, Holy Hatter birthday lunch. Big deal for me because outings are hard. It was a new restaurant.Bright lights. The place was small with no where for sound to go. Loud. It took forever for food. Food was good. Then I learned they allowed smoking. That was around 1pm. It’s 3am and I am still feeling it. Cigarette smoke is one of the worse for me. It is a seizure and migraine trigger. It could have been worse, I didn’t have a seizure. Unbearable pain and allergic reaction. I was already having a bad streak, probably because of the weeks of flooding. Man comes in and lights up. I am used to the ban on smoking in public places so it was very unexpected. I had to step outside into another awful situation and wait outside in the sunlight, Mom and I carpool. This was rather a deal for me, I was stepping out on the eighteen people I had gone to lunch with. With all the research done about how harmful the smoke is to the people around you, why would you disregard those around you? And in a restaurant. Gross. Take it outside and stand still so people can avoid the smoke. Why?

Aggravation. There should be more words to express the different angers.

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Reflectinos on Independence Day

My Uni hates this story, says what we did is awful, this is a warning, some may take offence. I feel like sharing my childhood 4th of July tradition anyway.

When I was little we learned about soldiers every Independence Day. My Dad would buy us the tanks and toy army men. My brother and I would take sometimes an hour to set up an elaborate battle with our allocated men and weaponry. After everything was perfect, sometimes hours went into the effort, we set off the firecrackers, tanks, fountains, helicopters, and other little fireworks at once. Then the little green and brown army men were not flame resistant. After the light show and pops were  all done, the four of us would servery the damage and start the casualty count. Unwound had no black, wounded scorched to melted, dead melted to the pavement. Whoever had the least men dead was the victor. My brother usually won. We hardly ever had a soldier come out unwound-ed. And if it wasn’t melted, it was sent back in next year. Each soldier that could be scraped off the pavement was saved. Not a one has ever been thrown away. I still have them all. My Dad is a vet and started the tradition to teach us about the mindset of those who protect our freedom. Our heroes enlist and re-enlist knowing that they are going to be sent into dangerous situations. They know that they are not going to come out of them whole. War leaves scars. Soldiers scar themselves for us to live in peace. They are to be honored and treasured. It does not matter whether or not we agree with the politics, we support them. It boils me that parents do not teach their kids to respect soldiers. What do they think today is about? Yes it is remembering our beginnings and the birth of our freedoms, but shouldn’t we also remember those who protect them?

It makes me sad that my illness has changed the meaning of the 4th for me. It used to be the best secular holiday. I looked forward to it, the best part of summer. Dad grilled and we did fireworks. One of the only holidays we normally didn’t have church, it was just the family. But now it is just full of pain. I can’t stand it. These past weeks that fireworks have been legal have been awful. That makes me sad. My illness has turned one of my favorite times of the year that is very meaningful to my family into a very stressful one. It limits what my family can do. We don’t really do fireworks anymore, smoke bombs and sparklers during the day replaced the elaborate wars and show my did Dad after dark. We don’t go to city display anymore. That is more a time of stress, is it going to be louder this year? Could it trigger a major attack?

Today was not as bad as last year, thankfully. I hope the same was for all who read today.

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Migraine is my Kryptonite

I found a place to read DC Comic’s “Supergirl” online: http://www.hellocomic.com So I’m excited. As I was reading last night, before the internet went out, Kara is encased in the kryptonite. I want to share how she described it on page 3 of issue 4.

I will tell people that sunlight is my Kryptonite because it is my worse trigger. But being at the height of a migraine feels like this. Like you have been greeted by something hazardous and it is not letting go. It is making all your senses go crazy and the consumable pain. Before long your senses going crazy bother you less and less because the pain all that you can feel is pain. Soon you feel like all there is pain.

Then turn the page, Kara found a rescuer in an expected place. Maybe on our bad days we can find new and unexpected surprises.

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Filed under DC Comics, migraine/headache, Supergirl

What Does Hope Look Like? – MHAM Blog Challenge Day 26

This made me smile. I worked on VBS all day. and was thinking of what I have to do tomorrow, I’m glad I read it right before bed.

MigrainePuzzlePieces

Today’s prompt: Choose your own hope topic: Please choose your own topic related to living with hope and write about it.

photo credit: Silhouette via photopin (license) photo credit: Silhouette via photopin(license)

Eyes of fire,
Even when sad.
Stance of strength,
Despite the bad.

Legs that are stable,
During rocky times.
Feet ready to adjust,
Despite the difficulty of the climb.

Face of beauty,
Though hiding pain.
Hands that give,
Despite feeling lame.

Hope is inside us,
Though we are weak.
Trust it to guide us,
Especially when things are bleak.

– Skylar

“The Migraine and Headache Awareness Month Blog Challenge is organized by the:
American Headache and Migraine Association.”

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