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Jay’s Holiday Visit!

As you might know, I’m from Ontario, Canada. But my boyfriend, Jay? He’s from Pennsylvania. So the fact that he drove here on November 27th to spend five days with me is quite a big deal. (Hint for any non-US readers: that was their Thanksgiving.) Since it’ll be way too snowy for him to come here for Christmas itself, and since he missed out on bird day because he was driving, my mom actually cooked our family a turkey dinner last weekend so that we could celebrate a holiday with him–even if it wasn’t ‘technically’ ours. (Canadians celebrate Thanksgiving in October.)

Aside from the weather he faced on the way down mother nature totally cooperated. We went to Kingston twice–the first time to do some Christmas shopping at the Cataroqui Mall and the second time to watch Mockingjay Part 1 (which we both really liked.) We also did lots of running around in town: we probably went to the Napanee Walmart five times, we went to Union Burger twice–once by ourselves and once with my brother Shawn. We had two McDonalds’ breakfasts. I tried a McGriddle for the first time. It tasted interesting but … weird. I can’t decide whether or not I actually liked it. I went with the much safer Sausage, Egg & Cheese McMuffn the second time.

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A long standing Jay & Kat tradition: the “first day” breakfast.

But by far our favorite meal out during the visit had to be lunch at Five Guys Burgers and Fries on our last full day. I mean c’mon! Look at this food!

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I was nearly done my burger by the time Jay took the picture!

Jay got the Little Burger with Bacon and I got the Little Bacon Cheeseburger. We’ve made the “mistake” of getting Five Guys full sized burgers and totally not being  able to finish them. Don’t get me wrong–they’re fantastic. But wasting food, especially their fries–which we love–is not. As for those fries, I’m sure it’s pretty obvious in the picture that we shared a large. And according to Jay there were as many in the bag as there were in the container. That’s just awesome.

We had our Christmas presents for each other purchased by the end of our second day, but we put off actually opening them up because we wanted to do that under the Christmas tree. Unfortunately,. things just didn’t turn out that way. At least we did get pictures! Want to see what we got?

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My nickname is Mao (think a cat noise) so this stocking was perfect for me!

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Jay loves penguins, so we bought this stocking for him. 🙂

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Tim Hortons White Pomegranate Tea–my favorite!

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The Dragon Age: Inquisition strategy guide. Witness the power of trading in games. 😛

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My beautiful new tea maker! ❤

If there is anything in life that a cup of tea can’t make better, I haven’t found it yet.

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Dragon Age: Inquisition. Maybe this game will actually keep Jay busy for a while? 😉

We also learned some interesting things as gamers this visit:

1. Watching someone else play a Dragon Age game is way less interesting then actually playing the Dragon Age game.

2. I like Hyrule Warriors, a game which I had absolutely zero interest in prior to Jay visiting. He’s lucky he had it digitally on his Wii U–it would have stayed with me otherwise. 😛

3. Kat and Smash Bros do not mix. I love the characters and the art style is really cute, but I can’t beat Master Hand on easy mode, which means I can’t really get anywhere. What happened to your story mode for single player, Nintendo?! It’s what I bought the other games in this series for. I’m still debating whether Smash needs to get traded or not. It’s frustrating to pay $65 and tax for a game and discover I may not like it / be able to play it.

Overall, though, I think that Jay and I had a beautiful visit filled with lots of laughs, love and fun. By some form of good fortune I wasn’t very sore while he was here, so we got to go out and do a lot of fun stuff. I can’t wait for it to be time for him to visit again. ❤

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While all the world wants everything,

All I want for Christmas is you!

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Needle Phobia: It’s Nothing To Poke Fun At

It is estimated that on the continent of North America, 10% of adults and 25% of children have some form of anxiety, fear or phobia of needles. There are a variety of ways that these problems can manifest and a variety of reasons why people end up with them in the first place. Fortunately, there are actually many things that can be done to help ease these issues so that those who suffer from them can still get the good medical care that is vital to living a happy and healthy life.

The big problem is actually finding people within the medical profession who are willing to understand and empathize with this situation. Many people, both within the health care field and in our world in general, have been conditioned to think that having any form of a fear of needles is just cowardly and “stupid”. The big problem with this line of thinking is that it actually results in people who are afraid of needles not seeking or receiving the treatment they need. And if that is happening, it means that the numbers I stated at the start of this article are false in the worst possible way: because the number of people who are afraid and not getting help makes those numbers higher.

Here is a fabulous TED Talk with Dr. Amy Baxter about this issue that I wish everyone would take some time to watch. This video focuses mainly on the effect that indifference to needle phobia during childhood has on society, but as such it does also touch on how that fear tends to carry on to adulthood and on how the fact that if this happens it is a serious issue. Also, Dr. Baxter’s numbers are even worse then mine. According to her, 25% of adults and 2/3 of children are afraid–and without proper treatment, that fear does not go away by itself.

This is a problem we cannot continue to ignore!

My First Blood Test In 18 Years: 

The thing is, depending on the level of fear someone feels about needles treating this problem can be done with relative ease and minimal drama. The key, at least from my experience as someone who -needed- help with this, is to find out what it is that actually makes someone afraid. I had several concerns:

— How much is this going to hurt?

Solution: I had the option of using EMLA cream to numb the area where the needle would go. There are a variety of topical agents that can be used for this throughout the world if you think you need one. Do a bit of digging (there’s a great resource for needle phobia here.) and find out what’s available in your area. I didn’t end up choosing to do this, BUT the nurse and I agreed prior to my test that if we learned pain is my problem, I would do this in the future.

Luckily for me, we learned that’s not my big issue. For me getting a blood test in my elbow hurts about as much as when my mom clips my big toes. Something I can’t do because of cerebral palsy and balance issues. Do NOT feel ashamed if pain IS your issue! Pain tolerance and pain triggering are both very personal issues that effect everyone differently. I can handle a blood test–especially now that we’re using music to keep me calm–but I can’t handle holding a hot cup of coffee worth crap!

— I don’t want to see the needle

For me, this one is huge. I. Do. Not. Want. To. See. The. Sharp. Pointy. Object. About. To. Be. Inserted. Into. My Body. My research has informed me that there are people who reject the idea of anything piercing their skin. Think about it! Up until about 200 years ago the idea of anything piercing our skin was a horrible thing. It has been suggested that some people have genetically passed down aversions to this. For me it just feels weird and makes me anxious. However, others appear to experience vomiting, tears, urination, shortness of breath and even fainting due to this.

For my problem, the solution actually presented itself as we were getting me ready to get the blood test. Sunglasses. Yes, I realize that a person can just look away, but for me sunglasses allowed me to maintain a more normal position and still kept me pretty clueless about what was happening. Once I knew that the spot for the test had been cleaned, I just closed my eyes (much less weird to do that behind sunglasses!), listened to my iPod and let Kendra (the nurse) insert the needle.

— I have massive pre-needle anxiety that can make the procedure a LOT worse if it’s left to run its course.

Keeping my mind busy prior to the draw, both at home and while waiting, is something that made a huge difference in helping me to remain calm and therefore have an easier time with the overall process. At home I deliberately drank 3 large glasses of water throughout the morning to make sure I would be well hydrated. I put moisturizing cream on the area where the needle would (likely) be going so that the skin would work -with- the needle. I did exercises to ensure maximum blood flow. And I listened to my iPod while having my elbow wrapped in my heating pad for 10-15 minutes before we left.

At the Doctor’s office, I listened to my iPod while I waited and visited with my brother until it was time for me to go in. I kept my coat on until it was time for the test, preserving the warmth I had set up at home and by wearing the winter coat while traveling. Because my balance isn’t great, we had me sit in the doctor’s roller chair and used the examining bed as a place for my arm, rather than having me lie down on the bed (since it’s high and that makes it hard for me to get on there and stay still.)

Kindra and Dr. Wilson (whom I believe is studying with Dr. Andrawis?), along with my brother Mikey, kept me focused on talking about things like the trip my boyfriend took from Pennsylvania to visit me last week, what we all wanted for Christmas, and where Mikey and I would go to lunch after the draw. This allowed them to mix in any instructions about what we were doing without me losing the calm I had gained from my iPod. Once we were all ready, we put my headphones back on, I extended my arm and looked moreso toward Mikey. We turned my music on and the test’s physical prep–putting on the tourniquet, applying sterilizing cream, finding a vein–happened, followed by about one second of mild discomfort (again: YMMV! This is how -my- test went.) The overall test itself–tourniquet to putting the sticky tape onto the cotton ball, took about two minutes with a butterfly needle. That’s pretty quicky, considering that my brother counted four vials swapped when I asked him about it after.

The added bonus of my experience is that Dr. Andrawis had the foresight to actually get the blood needed for the tests he would want for a yearly physical, as well as what we needed for my arthritis. While I am now confident that I could go and get another blood test much easier if I need one, that doesn’t mean I want to get poked any more than is actually necessary. I don’t need to love the feel of something going into my veins–I just need to be able to be able to sit and chill while it’s being done. It’s better for me, my family, and the nurses and doctors who want to help me.

Preventative medicine, including blood tests, is awesome! It can help us catch or even avoid problems before they are able to get out of control. By doing this, we also have the opportunity to reduce or avoid procedures that suck far worse then a one of the mill blood test ever could.

For those still suffering from needle anxiety, fear or phobia, I will end with these three thoughts:

1. You are not alone. Look at those stats again. You might not know who your fellow needle haters are, but we do exist and you’re not crazy! Also, it’s not just a “little kid” problem where you need to “grow up”. Consider this: needle phobia is special because it is a phobia that we need to face (unlike, say, clowns) but which we don’t get to face on a daily basis like someone might face an elevator. Ultimately, though, it is a fear that can either save or destroy our lives, so face it we must!

2. There is nothing shameful about being afraid. Anyone who tells you otherwise is stupid! Fear is the body’s reaction to something it has acknowledged as a threat. Would you just sit there and let someone run you through with a sword? Hell no! But that’s what happened centuries again. Piercing weapons were totally the norm. So does it really come as any shock that some of us subconsciously react like we’re gonna die if we get poked? Not in the slightest.

3. There is help and there is hope! Again, I urge anyone with strong needle fears to watch the video I posted and to check out this link that goes to a comprehensive needle phobia page. I also strongly encourage you to take time to talk to your doctor about this fear. (And if you get an idiot, find a new doctor! If they can’t tactfully and empatheticly help you with “I’m afraid of needles.” how are they going to be if something that’s actually BAD ever happens to you?) The purpose of medicine is to reduce pain and suffering in any and every way possible by protecting our bodies from disease, disability and damage. If something doesn’t have to hurt, it shouldn’t.

I won’t say “If I can do it so can you!” because I know this is something that works differently for everyone. I -will- say, though, that it -can- be done. You just need to work with your doctor, nurse(s), phlebotomist, etc. to figure out what issues you are dealing with in regard to your fear and to find adequate solutions to help alleviate them.

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The Doctor Dilemma…

As I spent roughly four weeks waiting to go to my doctors appointment in early November, I was left with a lot of time to think. Some of it I spent productively, researching different types of arthritis, their diagnostic process, their symptoms, their treatments and any co-relation they might have with cerebral palsy. Some of it, though, I totally wasted. As I sat and waited, it occurred to me that “all doctors” had to come in one of two flavors:

(a) Doctors are highly intelligent people who have chosen to dedicate their lives to the comfort and wellness of their fellow human beings.

or

(b) Doctors are the grown up version of those creepy kids in biology class who were actually excited about dissecting a frog and a cat.

While I am sure that both of these statements are true about some doctors, I’m also quite sure that these two statements are far too broad to actually have a snowball’s chance in hell of covering every doctor I have or will ever meet. More important, it was (and is) a silly set of generalizations that would do me no good at the appointment that I was gearing up to attend.

For the record: I was worried about absolutely nothing. But the amount of time I spent on research? That was very helpful and totally paid off.

On the “down” side, I most pressing fear did come true: I needed a blood test for us to be able to gather information that will help rule the likelyhood of different types of arthritis. On the plus side, I had that blood test on Thursday. and it went fine. (I’ll be writing more about it and needle fear / phobia in the near future, while my thoughts are still fresh.)

But in contrast to that part of the appointment, which I was afraid of, I actually gained several very valuable things. For anyone who might be reading this post who has a fear of doctors, here they are:

(1) I have finally met my new GP after 18 years of avoiding going to the doctor. I actually like this man. He is smart and compassionate. I wish I had made an appointment sooner–there is no doubt in my mind that many things could have been better faster had I done this.

(2) I finally have an accessible parking pass after 32 years of living with cerebral palsy. This will drastically reduce my chance of hurting myself on ice in the winter, and it will also help tremendously with helping to reduce pain from arthritis by conserving some of my energy but also encouraging me to go out despite how my body has changed.

(3) He set me up to receive both occupational (mainly for my arthritis) and physio (mostly for my cerebral palsy) therapy. The fact that he knew -anything- about the challenges I face in life as an adult with cerebral palsy, and that he actually flat out asked me whether I had received any help since childhood, was extremely impressive. My research had told me that most GPs don’t know a thing about my condition once someone is no longer a child. (And quite frankly, not all are aware enough to recognize a child might have it in the first place. But let’s just not go there today, hm?) Further, the fact that he actually wanted me to get both physio and occupational therapy (PT and OT) was great, too. Apparently there are too many doctors out there that aren’t aware of the value of OT. Having had my first OT appointment on Friday, I can already tell you it has been a tremendous help.

(4) He made certain I knew how to take my medicines properly and safely, and corrected the dosage that I was using so that they would work better. We were definitely on the same page–by the time I got to see him my issue was milder pain and stiffness, not the more extreme pain I’d had earlier. We discussed making sure my medicines were safe and using complimentary things like heat cream (a535), a heating pad, etc. rather than bulking up on more pills than I actually needed.

(5) When we discussed the need for me to have a blood test, he set it up so that I would come to his office for that rather then going to a standard lab. He made sure that I was aware that I could get EMLA (numbing) cream if I felt it would help me and checked to make sure my veins were large enough that it wouldn’t cause an issue. He also assured me that we would use a butterfly (smaller & less painful!) needle, made sure I’d met the nurse who would do the draw, and advised me that many people who have the anxiety I do over needles find it helpful to bring music to listen to during the draw and a small snack to eat after it.

I think the two most important things I can say about this first appointment with my new GP are:

(1) I left his office feeling both relieved and hopeful about the future. I knew I was no longer alone with regard to either of the conditions that were or that had become a part of my life. Further, I felt that I had found valuable allies in both the doctor and the nurse.

(2) I actually felt a sense of power, both about what was happening to me and what I (and those helping me) were going to do about it. For someone who went through a lot of procedures as a small child, this has been a very uplifting and enlightening experience.

I know the road ahead won’t always be easy, but at least it is starting to look somewhat manageable. That’s far more than I dared to hope for going into this.

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It All Started With A Big Bang…

According to “The Hallow Men” by T.S. Elliott, the world ends with a whimper, not a bang. Considering how much of an impact the last three months have had on my life, I find this idea very comforting. The changes happening to me and around me may be going off like a series of grenades, but at least I have some reassurance that I will find a way to get through them. It may not be easy to find a way through the smoke and rubble, but I will eventually find a way to maneuver within the debris, if not escape it (mostly) intact.

But I’m getting ahead of myself. Who am I? What’s happened in the last three months? And why so much freakin’ drama? I guess I’d better start from the beginning.

I was born in a little town in Ontario, Canada to my wonderful parents…

Oh, wait. Not -that- beginning!

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Hi there! My name is Kathy Coleman and if you’ve managed to find your way here you likely are someone living with cerebral palsy and / or arthritis, or you know someone with one of these conditions. No? Well you might also be here because of a review or opinion about music, gaming, books, movies or anything else I become obsessed with during the time I spend writing this blog. No matter what has sucked your mouse into clicking the link for my blog like some devious black hole, welcome! Thanks so much for dropping by!

Anyway, getting back to the topic at hand… (I hate introductions–especially blog introductions!)

Everything went nuts on September 16th, 2014. I had spent the past two weeks going over to my grandma’s for a steady TV diet of Steve Wilkos, Judge Mathis, Jerry Spring, Maurrry Povitch and Family Feud. She has Multiple Myeloma (more on that in the future) and my mother hoped that me being there would encourage grandma to eat and drink more. And it seemed to be working…

Then I just had to open my big mouth…

My dad and I were in the kitchen the weekend before that fateful day, and we were talking about the possibility of putting a TV signal into my room.

“Gee, that’s a great idea,” I said, feeling oh so clever as I set up the punch line to a three year and counting ‘joke’. “If we do that I’ll be able to sit and watch TV for hours. We all know my hands are going to do ‘their thing’ in the next few weeks. I might as well be prepared.”

For the record, my hands ‘thing’ is to swell up like a pair of hot air balloons. It ‘never’ fails. Damp weather hits and my hands become mitts. I felt so, so, so smug thinking I had them outsmarted for once. Like what happened to them was a chess game and I was calling check before we had even put the pieces on the board.

Is it any wonder that under such hubris that life decided to bend a few rules of its own? I can’t prove it, but I do believe there is something out there and I believe it has a sense of humor… So, I’ll play the “yes” card there.

What happened?

By the end of that fateful weekend, my left knee was “a little” sore. No big deal–it had done that a few times before. A week or two and my “grumpy” knee would get over itself and everything would return to ‘normal’. (Or as normal as 5 day a week talk-show binges with grandma could be.)

I’m really glad ‘grumpy knee’ is not a horse I was bettin’ on at the races, ’cause I would have lost a lot of money. Mind you, maybe it would have been better to bet on a crappy horse then to put up with what actually went down.

By Tuesday September 16th, the pain in “grumpy” knee was also in my right knee, both my ankles, both my shoulders, both my hands and both my elbows. I ended up being unable to keep going over and watching grandma. Her bedroom is at the top of a flight of 8 stairs, and with cerebral palsy, if I can’t grab a railing stairs are a big fat no.

“Give it a few days. It’ll be fine.” My mother reassured me–and no doubt herself since no one else could really do what I had been doing.

Oh no. By the following weekend we were at emergency showing a nice doctor what was happening to me. She advised me to use Tylenol Arthritis and Advil Arthritis Pain and to make an appointment with my GP. She told me that it was vital that I find out exactly what type of arthritis I’m dealing with.

I’m terrified of going to the doctor. I endured -horrors- as a child getting procedures done to my body which I did not understand. But this woman won my respect and I promised her that I would make an appointment with my GP as soon as I could.

I kept my word. I made and went to that appointment. In this blog, I will talk about my experiences since that fateful trip to the ER, as well as some of my hobbies and passions–the things that I’m fighting to be able to keep doing, that give me the courage to keep moving forward.

I hope that you will choose to come along for the ride. There is much that I can tell you…