"Always the Statistic", raising awareness one post at a time.I keep "dancing" the best way I can.: Dysfunctional Function

Imagine a sledge hammer has weasled it's way into your head and starts pounding profusely on your brain. All you can feel is this intense throbbing that just continues to get worse and worse. You can hear your heart beating and feel the blood pumping throughout your entire body. You could tell anybody your pulse just by counting the beats that you not only hear, but feel with each throbbing, pulsating beat. You are extremely nauseous and the slightest movement can have you hunching over the nearest blue puke bag, trash can, or toilet puking and dry heaving with such force it leaves you with severe abdominal pain.

Now shine the brightest light in your eyes and try to not let it bother you. Every noise causes chills to go up your back and you just want it to stop. Even the sound of air can be so loud, every sound drives you insane! You want to scream, but can't because that will make it worse. Try to carry on with your day, as though nothing is wrong, because you've got to have your brave face on. After all, it's only a headache, right? Yet, soon you find the noise, nausea, pain, numbness, etc. simply unbearable that you become extremely irritable. You are having the hardest time focusing on anything. Every little noise is magnified by 1,000 that even the sound of the air moving is intolerable. You need to find a quiet, solitude place as soon as possible, but there is still so much to be done. While you are experiencing all of the above, imagine you have just spun around in circles over a dozen times and are extremely dizzy. Between the dizziness and the nausea you try to move as little as possible. Did I forget to mention that you also have a very heightened sense of smell, and the scent of something as simple as coffee can escalate the migraine so that the painful, intense throbbing is even worse now than, it was ten minutes ago? Just when you think it can't get any worse, the pain heightens even more. Even though you want to continue on, migraine wins!! Your body starts to go numb. You break out into hives. Your lower extremities turn dark purple (Reynaud's Disorder). You can't speak coherently. You can't write. You are confused. You can't see. When you try to stand up, you pass out. When you come to, your start retching again. You took meds, but have since thrown them up. You lay in your bed hoping for a little rest. Maybe if you can get some sleep, the migraine will ease up. You lay there for hours writhing in pain. Painsomnia! Don't forget about the allodynia, where even your hair hurts. Allodynia is often referred to as "other pain" where a normal stimulus usually doesn't hurt, but it does not. For example, hair touching my head is so painful. I have been so tempted to shave my head to get reprieve from the pain.

As you lay there willing yourself to get better, the guilt sets in because you can't even take care of yourself, let alone your family. You feel like such a failure as a Mom, a Wife, a friend, and a daugther. The guilt consumes your entire being, there is so much you wish you could do, but the migraine has caused you to surrender. You lay in bed willing to sleep, but you are a victim of painsomnia!

Also, you cannot pee. You sit on the toilet forever hoping for just a tiny stream of urine, but nothing. So,you get the pleasure of having to straight cath yourself in order to pee. It is pretty damn humiliating that you can't even pee by yourself. You suffer through this excruciating pain nearly every day. You have 1-2 days a month where you feel well enough to run errands or do things that normal people do. As time goes on, you start getting numbness in you lower extremities. You have been ordered to have an assistive walking device, because you were having frequent falls secondary to the unpredictable numbness in the lower extremities.

Do you think you could do it?

I am not writing this post for you to feel sorry for me or feel bad for me. I just wanted to give you a tiny snippet of what I have been fighting for over a year. I wish a migraine was just a headache that would go away by taking two ibuprofen and putting ice on my head. No, I have chronic, debilitating migraines. I have a migraine every single day, some days are much, much worse than others.

Migraines can be so complex. My entire body hurts beyond recognition. The slightest touch makes me writhe in pain. It is so hard not being dependable. I cannot plan my life because I never know when another debilitating migraine will take over. I say debilitating because when I get a migraine, my body goes numb. The numbness used to be confined to my left arm and left side of face only. Now, the numbness is unpredictable and affects any part of my body, at random. There are times I can't walk. I can't drive further than a few miles from the house, even then my driving is limited, depending on the numbness and pain level. I have to depend on my husband or bestie to be my chauffer's, most of the time. When migraine is at my worst, my body throbs in pain. I can feel the pulsations between each and every tooth. My tongue swells. I forget who I am. I can't speak coherently. I can't write. Vomiting, that's just an added bonus. I rarely get nauseated. I usually get a 2 second warning before the vomiting begins. I carry the blue puke bags, from the hospital, everywhere I go. Feeling like such a horrible mom because I can't even take care of myself, let alone my family. I don't know what we would do without Rick. He has taken on so much and I know that he carries a very heavy stress and burden. I hate that I make his life so much worse.

There have been times that I have mentioned that I wished I would die. LET ME BE CLEAR, NOT ONCE HAVE I BEEN SUICIDAL. There have been times that I have voiced that I give up, that I am throwing in the towel, that I can't keep doing this. When I have said these things, it is because I have been in unrelenting pain for days. It gets to the point that I literally have to take things minute by minute to keep going. I go to a psychologist every week. I have individual sessions with him and Rick and I go to group therapy every Wednesday. There are times Rick can't go because he has LifeFlight meetings. The group therapy is phenomenal. I have told my psychologist exactly what I have said about wishing I were dead. He validates my pain. He told me it is so hard living a life with chronic pain. He told me that admitting I wish I were dead and writing about it, shows how strong I am. In my eyes, I have thought it would be easier for everybody if I went to sleep and didn't wake up, solely because I feel like I cause so much stress and anxiety to everybody in my life. No, I have not contemplated suicide. Living with severe pain is horrendous. I want at least one person to understand how much pain I am suffering with on a daily basis. If you knew how much I can do with my high level of pain, you might have a greater respect for all of this. When I have to hide away from the world, it is because the pain is so severe, like a level 10+. My bed has become by cocoon where I hide away and hope and pray for some relief. I do not like it when I have to hibernate. I hate when I miss out on family activities. I hate when I hurt so bad that the tears just roll down my cheeks. So yes, I have said that I wish I would die, but not because I want to die, it is because I want to free myself of pain and anguish. I want to be able to take care of my family. I want to be able to return to work someday. I want to feel human again. I don't want to suffer day in and day out with such excruciating pain, but for now this is my life. I accept it and I make the most of my life. I am one tough warrior and I don'g give up!

You wonder how I can be on the computer if I claim to be in so much pain, the answer my friend, is it is a distraction from the pain. It is something I can do from bed. My vision is not affected very often when I get migraines, sounds and smells bother me more. I found an amazing support group, for chronic migraine suffers, last summer. When I found CMA, I was ecstatic to find a group where I am not the only person that is constantly battling chronic migraine. As times have passed, I have found other support groups as well. All of these support groups are a life line for me, because I can talk to people that suffer and they understand. Being a chronic anything, pretty much takes away your social life, so your social life becomes your support groups. I have met some of the most amazing people in these groups and if it weren't for chronic migraines, our paths would have never crossed. I have so many friends that I cherish, oh so very much.

I take each day as it comes. If I am feeling good, a pain level of 6 is a good day for me, you better be darn sure that I take advantage of the time I have. I play with my girls. We cook. We dance. We try to do fun things together as a family. I can't promise my girls that we can do something in a few days because I have no idea how I will be doing. I take advantage of the moment. I don't forget about the beauty and great things in front of me right now and focus solely on the future. I know that I need to appreciate each moment as it comes. Times are VERY hard for my family right now, but that hasn't stopped us from giving up. I love it when my girls come and hang out in my room with me. During the school year, they do their homework in here with me. We watch Parenthood, Grey's Anatomy, Austin and Ally, Shake It Up, etc. We do our nails. We talk. I love how they open up to me and tell me all about their lives.

Life is Always Better When Dance is Involved.

My girls take great care of me as well. They have brought me breakfast in bed so many times. When Mallory is at a friend's house, she calls to check on me. My girls are so precious and I love how much they care about me and help me anyway they can.

I have had to have 2 full body MRI's because my migraines changed, I started experiencing new symptoms, and I was falling frequently. The good news is, I do not have MS. There are a couple of other areas that my new neurologist is worried

about, so I will be getting additional testing done in the next couple months.

The sledge hammer continues to beat me on the left side of the head. Two ice picks are jabbing from the back of my head coming out through the front of my eyes. A block is gently hitting my ride side. My fingers are only tingling at the moment, I can feel them. My entire right leg is dead, numb.

I am not a quitter. I am not an attention seeker. I don't blame migraines or use migraines as an excuse when I don't want to do something. Do you know how depressing it is to have your identity taken away from you? Well, I sure do. Right now I am not near the wife that I want to be. I am a so/so mother because I have to opt out of so many activities because of excruciating, debilitating, migraines...NOT A HEADACHE!!!

I have not been able to work for 19 months. I was so in love with my job. I loved my job at Primary Children's Hospital. I was a RN/Charge Nurse and I loved. NICU was my passion. It was my calling in life to be a NICU nurse of very critically ill newborns. I am depressed and discouraged because I have lost the identity of two very important things to me; being the kind of Mom I want to be, and being a NICU nurse.

Right now I am floating in space hoping to make a safe landing and find myself once again.

I have set backs. I am not a quitter. I will continue to spend all of my days researching for help, studies, etc. I may not be able to do much, but I can most definitely do research.

LET ME BE CLEAR, I DON'T PUT ANY OF THIS ON MY BLOG TO UPSET YOU. When I have such severe migraines that aren't easing up, I voice I wish I were dead not for you to freak out and think I am seeking attention. I write this because it is my out, my way of hoping for even one person to say I understand, instead of attack. I can be on computer when I am in so much pain because I can lay back on pillow and type away. Everybody has their own way of dealing with pain, and this is one thing I have found. I just wanted a small way to explain to others what it is like suffering with debilitating migraines. Writing and sharing my story is very therapeutic for me. I also do it so I can look back and remind myself what a strong, valiant warrior I am.