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Monday, June 9, 2014

Migraines ~ Krys from A Healthy State of Mind


Hello there, my name is Krys & I have been a blogger over at a little place called A Healthy State of Mind for two years now. I was really excited when Kristine asked me to be a guest blogger here on her brand new blog, Finding Joy in the Midst of Chronic Pain. I feel very honored to take part in her new journey into the blogger world.
  
To be honest, I felt slightly hesitant at first to write about my own experiences with chronic pain. It wasn't because I didn't want to talk about them, nor was it fear of sharing my thoughts openly... It was because I feel that I am one of the lucky ones. By lucky, I mean that I am able to get out of bed every morning. I am able to go grocery shopping, clean the house, plant in my garden. I am able to do things & because of that I find myself often undervaluing the pain I do have. There are so many people out there worse off than me & more often than not I feel guilty for complaining. A little advice... Don't. Don't ever feel guilty for hurting. Don't ever think that just because someone hurts more or even differently than you, that your experiences are insignificant. It matters & you matter. Your pain, emotions, feelings, life, is just as important. Never forget that!

Moving on & back to a little bit more about myself. I am currently diagnosed with Polycystic Ovary Syndrome (PCOS)Anxiety Disorder, & Migraines with aura. It certainly is a nice little cocktail of some invisible illnesses & some not so invisible side effects. All of which are often misunderstood by those who have never experienced them. Everyone has bad days right? Right. But not everyone has them nearly everyday. Anyway, today I am going to talk about Migraines.

Migraines with aura are actually fairly new for me. I've always had headaches growing up, but last year on a road trip up to the Appalachian trail I was thrown into a full fledged migraine complete with aura. Migraines with auras are actually rare & only account for 20% of all migraines. Lucky me, right? When I first experienced the aura my first emotion was fear. I was nearly blinded by a bright wavy line that started off small & eventually took over my entire line of vision. I could not see & I had no depth perception what so ever. I cried & after it passed, I got home & I researched it. An aura actually comes before the migraine & can last up to twenty minutes. Once the aura passes the pain from the migraine begins. 

Since my road trip last year, I tend to experience two to three migraines a month. Most of the time with aura. I still wonder why they started when they did, but even my doctor couldn't explain it. Sometimes I think the change in the weather brings them, other times bright lights from a computer screen. But either way, they happen & they hurt. 

My Doctor prescribed me a migraine medication called Sumatriptan to take with my double strength Naproxen to treat my Migraines. He made it seem like if you take this magic white pill when your first experience an aura, the migraine will be stopped before it even starts. You'll be all better! Well, the first time I took it, it made me really sick. I was nauseated & warm inside my own skin. I was so dizzy that I had to lay down & eventually fall asleep because all of that on top of the migraine was just too much. When I saw my doctor again I told him that I would not be taking the Sumatriptan again. I told him how sick it made me & after staring at me blankly, he made me feel as if I took the medication wrong. Well, okay then!

I recently tried the medication again, I even took it with food to be on the safe side. Well, apparently I did not take it wrong the first time because it made me even sicker this second time. The muscles in the back of my neck & shoulders tightened & would not release. And, the migraine came anyway. So again, I laid in bed, aching, stiff, nauseous, & in pain. I will not take the medication again... I saw no point in making myself sicker. 

That's the funny thing with medications, they affect everyone differently just like illnesses. You never know who is fighting 
a battle with their own body or even with the miracle medications that the doctors prescribe.
                                                                                                                                        

Thursday, June 5, 2014

Did you really just say that?

Lately, I have been surprised at how freely strangers are sharing their opinions of me (or my loved ones) and asking direct questions that seem so personal. I was shopping the other day and had an older cashier. She was at least 20 years older than me (I am 40 something). As she started packing the groceries, I asked her not to pack them so full and added that I had a hard time lifting them if they were too heavy. She stopped what she was doing, looked at me, and said, "Huh, I can lift more than that!" My first response was, "Well, good for you!" and I smiled. As she finished scanning my items and I was paying, she kept looking at me. I said thank you and started to leave. As she began ringing up the man in line behind me, I heard her comment, "Well, that was weird." and the man agreed. I looked back and they were both staring at me. At this same store earlier in the month, I had another cashier get annoyed at my request to not pack the bags too full. She kept watching me as I struggled to load the groceries into my cart and was visibly limping. She asked, "What's wrong (emphasis was placed on that word) with you?" Unfortunately, in a small town, my choices are few and it happens in other stores as well. What, am I supposed to wear a sign or something? What happened to just general compassion?

My sister broke her leg this past winter and I took her to one of her doctor appointments. She was using a walker and we were trying to find a ramp outside so she could easily get inside. A man, who was leaving, went out of his way to let me know that the handicapped parking was at the other end and I should have parked there. The parking lot was almost full and I parked as close as I could. Since I don't have a handicapped tag, I am not permitted to park in that zone, but he kept persisting. Why? I have no idea. Then, inside, another patient kept hounding my sister with many questions about how she broke her leg, was it at work, how long ago and many other questions. It is nice to show concern, but this woman went on like she was going to write a book. It was awkward and weird.

My teenage daughter has postural orthostatic tachycardia syndrome (POTS). It is a malfunction of the autonomic nervous system (the system that automatically controls heart rate and blood pressure). Sometimes her heart rate and BP just rise or drop suddenly and she gets very dizzy or nauseous. She is in high school so, naturally, I made sure that it is on her records & have spoken with the school nurse about it. The school nurse doesn't seem too concerned though. Earlier this year, she had a sudden and severe rise in her heart rate and BP. My daughter called me and told me that she didn't feel well. I told her to go right to the nurse and have her call me. The nurse told me she was fine. How did she know this? Because, she looked fine. I asked her to take her BP. She didn't think it was necessary. Why? Because, she looked fine. As a mom, I went full-on Bear Mode. I told her to do it anyway. The nurse took her BP and nearly had a fit. "Oh, I am sorry" she says. "Yes, it is very high. You should take her to the ER" she says. I am already in my car, because I knew it was a problem. My daughter had another episode the other day. I told her to go to the nurse and I would call and let them know that I was coming to get her. The nurse was with other adults and just dismissed her. My daughter explained that she didn't feel well and that I was coming to get her. One of the other adults was quick to say, "You don't look sick". The school insisted that I get a doctor's note excusing her from school. Of course, her doctor wrote a note and was very concerned by their lack of understanding and knowledge on the subject. I brought the note and some literature on her syndrome to the nurse and she acted like it was the first time she had ever heard that my daughter had this. Sighhh. She had forgotten the entire episode just a few months ago. I went through everything again, she checked her records & bingo! Sure enough, it was on there! But, her attitude still seemed to be "she doesn't look sick". I know that she has a lot of students to care for and many might just be trying to go home but it shocked and really disappointed me that she wouldn't have remembered something like that.

It really blows my mind that so many people seem to lack compassion or aren't even willing to try to understand others before they jump to conclusions. Most likely, everyone we know is either suffering from some ailment themselves or know someone who is. I wonder if the people who are easily annoyed, amused, or confused about why some people act sick but don't look sick would feel if they (or their loved ones) were on the receiving end of their own comments, inquiries, stares, or dismissal. We shouldn't need to wear signs that spell out what's wrong with us. If only people were a little more open to the fact that invisible illnesses are invisible and anyone can be sick without looking sick, it sure would be nice!