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

Dysfunctional function

I posted this on my family blog back in November 2013, before I decided to start a new blog about my medical journey. I feel it is very important to post it on this page too. My goal is for at least one person to learn and understand that a migraine is not a headache. Migraine is a neurological disease, that is hereditary, and there is very little research on the topic. Migraine is not all in my head. I have been battling chronic migraines for over a year now, but I am not used to them. My pain isn't any less severe then it was two months ago. I have learned that on top of migraines, I have Reynaud's Phenomenon, Gastroparesis and Sjogren's Syndrome, all of which are auto-immune disorders, but are usually secondary to a primary auto-immune disorder. I don't know if I have a primary auto-immune disorder or not because we have not been able to fit any of the puzzle pieces together.

Imagine a sledge hammer has weasled its 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. Then 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. And because of the noise, nausea, pain, numbness, etc. you get extremely irritable. The sound of air moving is so loud, you must find a quiet, solitude place as soon as possible. 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 escalade 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. 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, you 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. The guilt sets in because you not only can you not get out of bed yourself, but you can't even take care of your family.

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 I can't even pee by myself. I suffer through this excruciating pain nearly every day.

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. 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, my entire body goes numb. I can't walk. I can't drive. I have to depend on my husband to help me or wait for the numbness to subside enough that I can get out of bed. 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. 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.

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, I have not been seeking attention. I go to a therapist every two weeks. I have told her exactly what I have said about wishing I were dead. She validated my pain. She told me it is so hard living a life with chronic pain. She told me that admitting I wish I were dead 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. No, I have not contemplated suicide. She said I am strong because instead of acting on those wishes, I have verbalized them which will help me. 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. I have said that I want to die because I want the pain and hurt to go away. 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 instead of suffering day in and day out with such excruciating pain.

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. I also have a wonderful CMA support group that has helped me so much. I have found a group where I am not the only person that is constantly battling chronic migraine. I have found a group that understands what I am going through, because they are in the same boat as me, and we are there for each other to offer me so much love and support.

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. We do homework, 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.

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 have had to grow up quicker, because they have had to become pretty independent at getting ready for school, making their school lunch, and making it to school on time. I get up with them, I offer to help, they usually turn me down and tell me to rest.

I had to have a full body MRI a few days ago because the severity of my migraines have changes and my lower extremities have started going numb. MS was the main concern because I had numbness in places that had never been numb before. 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. My right leg is pretty numb and Dr. Riggins was concerned when I couldn't lift my right leg in the air.

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, migraine...NOT A HEADACHE!!! I have not been able to work for 15 months. I was so in love with my job. I loved working as a nurse/Charge Nurse in Primary Children's Hospital in their level IV NICU. I am depressed and discouraged because I have lost the identity of two very important things to me; being a Mom, and being a NICU nurse.

Pain has changed me.

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

I have had to put ear plugs in because even the sound of air is way to loud for me to handle. I can feel the pulse between every single tooth. My tongue is swollen. I am having difficulty speaking coherently and making sense of it all.

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.