Wednesday, July 29, 2009

Things A Person With An Invisible Illness Hate To Hear

This is some of the top things I can't stand to hear from people who just don't "get it". It may be geared more twards Migraine, but I really want you all to add things you can't stand hearing in a comment - no matter what ICI you are suffering from.

This one is now a really popular web site: "But you don't look sick" I HATE this! So if I had a cast on my arm or was in a wheelchair or something, that would give me more of a reason to be in pain than the fact that I have a neurological disorder?

"We gotta find you a good doctor" - I have an excellent doctor, thank you. The fact of the matter is, I have an incurable disease, so until you walk a mile in my shoes and feel what my life is like and how hard I try to be well, please, just don't.

I have not had this one said to me, but I hear it a lot from others: "You're just not praying hard enough" or "You need to believe in God". First of all, what my religious beliefs are have nothing at all to do with my illness. I wonder what these people say to a person in their congregation or if their priest or minister has an ICI.....or what about a Nun? They are married to God so they should be really healthy by this persons standards.

This one is Migraine specific: "Oh, you have Migraines? I had one.....once, so I know what you are going through." Chances are, if you've only had one Migraine, it probably was not a Migraine. Saying that you know what I'm going through because you "had one once" is not realistic. I get them and tension headaches on a DAILY BASIS.

"Go to a chiropractor" - Yes, there are some that say chiropractic has helped them. I have been to one myself. I used to go all the time. But they will not cure my Migraines and they will cost me a ton of money in co-pays. Sometimes, a trip to the chiropractor (or even an acupuncturist) can trigger a Migraine. I don't know, I'm a believer in pharmacology! As my friend Kelly says: "Better living through science."

Another Migraine specific one, but I'm sure others with chronic pain hear something similar from time to time: "Oh, you have a headache? I have some Advil." First of all, Advil won't abort a Migraine. Second of all, it won't even touch the type of pain I experience from a Migraine or even a tension type headache. I have triptans, narcotics and muscle relaxers (oh my!) for the pain I have. Your Advil is like a tic tac to me, and if you know me and know that I go to a Migraine specialist every six weeks, along with take a handful of preventive drugs and supplements every day - all this does is make me feel bad about myself and remind me of how sick I really am.

Saying something like "oh, I heard about this new drug they are using for Migraines now on the news!" Chances are, it's not new, it's just the first time you've heard of it. Trust me, if it's about Migraine, I am pretty well read on what's on the market as far as preventives and other treatments. Again, this comment just annoys me more than anything else.

"I have a Migraine" - this one annoys me for two reasons. Either you just have a headache and you are exaggerating or you really have a Migraine and are too lazy to go to the doctor and get diagnosed. This one only applies to the people who misuse the word - not the ones that are diagnosed, going to the doctor, getting help and really know what they are talking about. This one also annoys me because people use it as an excuse to take off sick from work or, even better, drug seekers who know they may be able to score narcotics in the ER using "migraine" as an excuse. Thank you, fake migraine sufferers, for making the peoples lives who have Migraine that much more difficult to get proper treatment because now they thing ALL of us are just drug seekers. It takes a lot to get what we need when we end up in the ER due to having a Migraine for 3 days - and I'll tell you - as I'm sure every other Migraineur out there will agree - if an IV drip of straight up saline would take it away - then that would be what I'd want. It's not about the narcotics - a lot of us say up front to the ER docs that we would rather NOT be treated with narcotics. This is for two reasons: 1. then they know we are for real and not faking it. and 2. narcotics only mask the pain, they won't break the Migraine.

"Why don't you want a drink?", "Why won't you stay a little longer." All of those Why don't you or "you used to" type statements / questions just remind me that I can't drink that much because it will trigger a Migraine, and I need my sleep to stay on schedule as to not trigger a Migraine. Whining and trying to guilt me into something when you already know the reason behind it - especially if I am in pain - just makes me not want to deal. Thank goodness all my close friends have learned enough about what I go through to not do this to me. Some family members, well that's another story.

My friend Heather has a great little signature on her posts over at My Migraine Connection. It says: My disabling chronic illness is more real than your imaginary medical expertise.

I love this quote. It is so very very true! If only people would think before they speak, the world would be a much better place.

I can't wait to hear what you all have to say! I'm sure this is not all of them!

Tuesday, July 14, 2009

Back by popular demand....well, maybe just back.

Wow! I have not written in a very long time. Too long....and probably too long to catch up in one post.

On the Migraine front, I am seeing a Migraine specialist in NJ. She is wonderful. I don't think I've blogged since I started seeing her. I forget and due to head pain this moment, I don't feel like reviewing my previous ramblings.

I have been taking Diamox as a preventive. It is a medication primarily prescribed for myopia, but is also used for weather triggered Migraines, and also, Intracranial Hypertension (IIH or PTC) which I have discussed before and convinced I have. I am really going to push my doctor during this weeks visit to order a lumbar puncture for me. I mean, if I'm willing to go through with it, what harm does it cause to order it? At least then I will know once and for all if I have IIH.

The Diamox is working quite well. I do have occasional tinglies in my feet and knee caps, but primarily in my hands. I get the tingles throughout the day, but it's nothing I can't handle. I mean, it has cut my frequency and severity of Migraine down to maybe 3 a month....and that is a high number. Before seeing Dr. M, I was having about 22-25 Migraines a month. This is HUGE!!!!

Currently, we are trying to see what we can do to decrease my tension headaches. I was taking Zanaflex for them, which was working pretty well, but now that I'm on the Diamox - for some reason my tolerance for Zanaflex has decreased. I used to be able to take 2 mgs. no problem.....keep working, driving, not tired, and no pain! Now, since the Diamox, if I take a 1/2 a Zanaflex - I can't stay awake at work. So, I try not to take it while working. I only take it once I am home for the evening. I also take it every night now which has helped my Migraine frequency as well.

As far as life in general.....I recently lost a friend I had reconnected with. She was really funny and I don't remember a time I spent with her when I was not laughing. Kim, the friend that passed, and Sandy, another friend of mine, where around a lot when I was in grade school and starting high school. Sandy lived with us for a while, and she was BFF's with Kim, which is how I met her.

The three of us ended up working at the local grocery store together....ran in the same circles....I was always the youngest and the tag along, although now the age difference is nothing. They are three years older than me, so at the time, they were in high school, and I was in 7th grade. Big difference when you are that age!

I remember that during this time my father had shared visitation with my mom. I would have to go to his house every other weekend and half the summer. This sucked for someone who wanted to go to school dances on the weekends and hang out with my friends. There were no kids up at my dads. It was pretty boring. Kim and Sandy were like my sisters during this time. With Sandy living with us, there was always someone around to hang out with, and with Kim, well, being Sandy's BFF, she was always at the house.

Kim would write to me when I went to my fathers over the summer. I will always remember that. It was pretty much Kim and my friend Emily who would keep in touch those six weeks, which in kid time, felt like FOREVER!!!! When I would come home, we would have ice cream and watch scary movies. I always wanted to know what was up in their love life, because they were older and I could live through them.....since I did not have a boyfriend.....I don't even know if I really even thought about boys all the much yet. I mean I did, but not as a boyfriend I don't think. I just thought they were cute.

I was so happy when the three of us recently reconnected on Facebook. I found out that both Kim and Sandy were married and had children. Sandy now lives where I pretty much spent my childhood, right around the corner from my BFF Emily's childhood home. Kim's family lives right across the street from me practically. Kim and I both got married at Modick park, in the Gazebo. Her husband works for the fire department for our town, and I work for the town at the pound. It was like coincidence after coincidence....except for the kids part! LOL

Kim and I had been trying to get together, since we lived so close. On July 3rd, I had taken the day off because the 4th is our anniversary. I know that Kim and her family hang out at the "Mud Hole" as they call it here, which is the community lake. Shawn and I were coming back from shopping and drove past the mud hole and I said "I wonder if Kim is down there". I was thinking of walking down after we put away groceries to see if she was there. I put away the groceries and went to lay down for a bit. I kept thinking I could hear someone calling my name from the mud hole. I would have sworn it was Kim.

I got up and checked my email, facebook, and all that and saw a status comment from Sandy saying that Kim had passed away that morning. I could not believe it. How? Why? Kim had just lost her mom to cancer on Easter Sunday, and now she is gone too? this can't be happening. I really did think it was a joke at first until I read other comments and posts from people. I couldn't believe it. She was only 35. Way too young.

Kim and Sandy were very influential in getting me away from my father. He was by no means a "dad". He definitely has/had some mental issues that needed to be addressed. Plus, by this time I had a boyfriend and didn't want to have to go to my fathers every other weekend. I wanted to be with my friends. They gave me the courage to stand up to him and say that I wanted to only go up there when I wanted to go up there and that was that. That was the last time I saw my father for a weekend. I think I saw him once or twice since then - but even so, that was over 13 or more years ago. He only used me to get back at my mom anyway, so it was a destructive relationship from the get go. Probably one of the best things I ever did was get away from him.

This got me to thinking of where I was in my life....where I had come from. Thinking back to where I was then and where I am now. Also, thinking back to another huge moment in my life, when my house was struck by lightening. It was three years ago this past 4th of July.

Since that time, I ended a toxic friendship. I had been "done wrong" by this person once before....fool me once, shame on you, fool me twice, shame on me. I started hearing a lot of things that this person was saying and doing (she was my roommate at the time when the fire happened) and it was not good for either of us to stay friends at that point, even if she didn't see it yet.

I moved in with Shawn, since he was my next door neighbor, renting the apartment on the other side of the house. We started dating pretty quickly and started looking for a home after only dating about 3 weeks! We both just knew. We moved out of that house at the very end of November of the same year - yes, just 4 months after the fire.

Two years ago, Shawn and I got married on the 4th. We just had our second anniversary. We will be together for three years on August 13th.

I am one of those people who just don't want to ever regret things in my life. I don't regret anything thus far, since it has made me who I am. I feel like my life has had so much suffering that Shawn is my prize for enduring it all. I really could not imagine my life without him now. It's hard for me to think of a time before him. We knew from the start that we were going to be together. We both just knew. I don't know how else to explain it. So, if I were to regret anything I did, or take any of it would not have led me down the same path. I would not have the friends that I have, the husband I have, the life I have. I'm not saying it's perfect by a long shot, but it's mine.

For some reason, I felt the need to get this all out today. I have felt very sad today. I have been thinking a lot about Kim and what she meant to me, and also of my sister in law, Becka, who passed three years ago now.

Death sucks. Losing people you love, sucks. It is even worse when the person is young and has so much more to live for and experience in life. It is almost easier when the person is older. Maybe easier is not the best word, but when someone has lived to an older age, it does not seem as much of a shock I guess. All the deaths that have happened lately, well, the last three years, have been of people that were taken way too early. It sucks. It just sucks.