Some days, I wonder how I make it.

WARNING THE FOLLOW POST MAY CONTAIN TMI, THERE IS A LOT OF TALK ABOUT BODY FLUIDS!  READ AT YOUR OWN RISK!!

The past couple of weeks have been so emotionally draining and challenging for me. I find myself crying over everything.  I've had high hopes that I would be back to work by now, but I continue to be a zebra, that none of health care providers can have been able to piece together. I feel like I am no further ahead, then I was a year ago. They know that I have complex neurological issues, but I am not cut and dry, straight out of the textbook diagnosis. I am in pain all the time. I don't medicate a vast majority of the time because I do not want medication overuse headache, which can be caused by any medication you take, not just pain medications. I try to tough it out. But I do take meds, when my pain level is extremely high. I always write down what I take if Rick is not home and I do not drive. 

Today was such a hard, challenging and extremely painful day.I had a 3D migraine, which are the worst for me. I know that I am here, but I totally feel like I am living in a different dimension.  I have to lie as still as possible or it exbasturates. I think my gastroparesis has been acting up because if I eat anything outside of the BRAT diet (bananas, rice, applesauce, toast), I throw up. I don't get nauseated. I get about a 2 second warning before it makes it's way back up. Sorry, this next part might be too gruesome for those that can't handle vomit. This afternoon, I tried eating a doughnut, and yes I know they are not good for me, but it sounded so good. I wasn't even done eating it before it made it's way back up. It was awful because I was choking and gagging. Anything like bagels, doughnuts, bread, etc. are the worst to throw up, because it is like big chunks of dough, so I was puking, and gagging, and choking. My children were scared to death. They asked if they needed to call 911. I told them  no, I would be ok. It's just my stupid stomach. It was the worst puking experience I have had in a long time. I am so grateful for the the vomit bags, because if I were to puke in the toilet the chunks of dough would catapult into the water and then come back splashing me in the face. It is miserable. I hate puking. I would much rather puke bile. It tastes nasty, but it doesn't add to your "I can't eat that food  anymore" list. 

They come folded flat like this, so you can stick them in your purse, car, bathroom, etc. I have them everywhere.

This is what it looks like when it is open. It allows you to see how much you are vomiting. It helps me keep track of my intake and output a little better, than just guessing.

Here is what I look like my my pain level is about a 9 and I am trying to get out of bed and function like a normal human being. Not to worry, I was back in bed not too much longer after this pic was taken. I just couldn't do it. It is way too bright and every noise and smell was escalating my migraine symptoms. I showed my face to my hubby and girls to let them know I was still alive, but was far from feeling fantabulous!!

Here is another view of the blue puke bags. So, when you come over and you see this blue plastic bags strewn about the house, you will understand .  I don't know what I would do without the blue puke bags. They carry them at the hospital and at my neurologists office, so I always pick up a few with every visit because I go through a lot of them. I puke into these all the time instead of the toilet. I could list many reasons as to why I don't like to womit, yes womit, (it's just a fun word to say)  in the toilet and I will gladly fill you in, if you so desire.  TMI? Sorry I warned you!

I am sorry if that was too gruesome and TMI, but this is what my life is currently like. There are times I am grateful I don't get nauseous, because being nauseated is pure misery. On the other end of the spectrum, it is also hard not getting nauseous, because I puke when my stomach says no!  I can't predict when it is going to happen. I can eat something one day and be totally fine, I can eat the exact same thing another time and I know right away if my stomach is going to send it back to me. It makes it so hard for my husband. There are so many foods that I can't eat because of my gastroparesis, mix that in with a level 10 migraine and it is very difficult to find things to eat. I have been living on bananas, rice, applesauce, pudding, and toast. My bestie gives me crap about eating pudding, but I say "hey, if it helps keep food down where it belongs, I will gladly eat my tapioca pudding.  I drink a lot of water to stay hydrated. I have to keep track how much I drink, and how much urine I get when I void (I have to go every 3 hours and 15 min whether I have the urge or not, if I can't go on my own, then I have to cath). I have to set a timer on a phone, or I forget to go.  The blue puke bags help me keep track of how much fluid I am losing by vomiting. As long as I am fluid positive, I don't worry. But I can always tell when I start to get dehydrated, and I will get IV fluids when needed.

I have lost 12 pounds in less than 2 weeks. I have not been trying to lose weight. I lost a pound from yesterday to today. 

In 2010, I was hospitalized because of a GI bleed. When they did an EGD (scope of esophagus, stomach, and duodenum), my stomach fractured. They learned that my stomach is very rigid and does  not expand at all. So, I have to eat until satisfied. I cannot overeat, otherwise I get a second meal in reverse.

 Gastorparesis is a disorder in which there is delayed gastric emptying, usually caused by damage to vagus  nerve, but can still occur with vagus nerve in tact. In my case my stomach doesn't expand at all. The Gastroenterologist and several hospital personnel, i.e. physicians, residents, interns, RN's, Rad Techs, etc. had never seen anything like me, so I got several visits from many specialties and their residents to see if they could figure out the cause. I even got the privilege of suffering from utter humiliation when a big group of residents walked into my room (door is closed, maybe knock next time) just as I was shooting bloody cucka on the commode next to my hospital bed. All I got was, "you have had this since birth, and we have no idea what causes this or how this occurred. We are perplexed that you have lasted as long as you have. Me speaking in fluent sarcasm "oh I am so lucky to have lived so long with this non-existent medical condition because it is all psychological, and I surely need to be admitted to the psych ward".  (I did not speak these words out loud, I only thought them.) 

 I can eat very little and I have to eat bland, bland food.  I hate it when people don't understand all my issues, but I am not going to walk around talking about it openly either. I can write about it on my blog, because it is my blog, but when it comes to talking face to face with somebody I don't know very well, that is a whole different story.  I get told that I'm anorexic, sometimes they say it jokingly, but I can tell by their body language that they really are concerned that I'm anorexic. It can take hours for my stoamch to digest food that I eat. There have been times that I have puked in the morning, what I ate for lunch yesterday. I eat small frequent meals, and I try to make the most out of the calories I get. I have a difficult time drinking protein shakes because they taste much worse coming up the chute than going down.  I have irregular bowel movements, sometimes I can go a week without pooping. This is ok with me, because I hate to poop.I hate the smell and the mess that it makes. (ready to admit me to the psych ward yet?)  I would never poop if possible, but I know how bad that can be, so I have turned into a Senior Citizen and make sure I keep track of my bowel movements. I always look at my poop, due to being a nurse, before I flush the toilet to make sure there isn't anything abnormal about the color, shape, smell, etc. I do what I can to maintain a regular schedule. I recently had my doc write me a script for stool softeners, only because I can get 60 of them for $4 from the pharmacy or pay $18 for 20 over-the counter pills. The stool softeners have really helped because I no longer have catapulting marbles shooting out my #2 hole! I have normal soft stool. I take prilosec twice a day for the severe reflux from gastroparesis.  I sleep on a slight incline to help prevent refluxing in my sleep. I have to have a fountain coke to take my meds or I puke. Coke disguises the taste of the meds, plus I think a little bit of carbonation helps my tummy, so my darling husband makes sure I get a fountain coke in the mornings to choke down my meds.  There isn't much he can do for me, and he hates it, but believe me, he does anything and everything that he can do to help me feel better, he makes sure there is always food in the house that I can eat, he  makes sure I take my meds on time, etc. Yet through it all, he still tells me how much he loves me. He never lets me forget how beautiful I am, even though I tend to disagree with him on that one,  and how he is so lucky to have me as his wife. I disagree, because I feel I have brought him nothing but stress, financial woes, and a crazy lady that will sing and dance anywhere, without caring one bit what people around her think. He has even started joining in on the fun, which is the best therapy for me and my little girls.  I tell him and the girls that life is way too short, stop worrying about what everybody else thinks and just let loose and have fun. I strongly think that it is important for one to have fun and enjoy what he/she is doing without winning the approval from anybody but him/her self. 

My bucket list is very short. Participate in an, out of this world, flash mob and to learn to play the harp. If I don't learn to play the harp before I kick the bucket, I will be ok. BUT I MUST PARTICIPATE IN AN AMAZING FLASH MOB OR I WILL BE CRUSHED LIKE PEANUT BRITTLE!!!

In this picture, my bestie was having a rough day, so I tried to ascary (yes ascary) with my morning bed head! At least I wasn't the angry cat!

I have been bruising far more than my norm, I have been on aspirin therapy, but these gigantic bruises just started showing up a couple of weeks ago. They could be from all of the falls that I have done, which is why my doctor strongly encourages me to get a "walking stick". When we can afford it, we are going to get the walker that I can sit down and be pushed if I get too wiped out. For now, I am starting with a cane. It should be here any day now!

I barely bumped my arm, this is the bruise I got. My entire body looks like this right now. I joke with my husband and tell him that I could go down to the police station and tell them that my husband is abusing me, and they would probably believe me. But, my husband is so far from beating me. He treats me like a princess. He does whatever he can do to help me feel a little better. I feel so awful and guilty for giving him such a large burden to carry. He must love me, because he is still here, even after all the worry, stress and financial burden I have caused him. (Let's not forget the sharting, puking and passing out on him!!) One thing is for sure. I love "Rickety Tickety Tan Tan" more than any body else (children and fur babies are loved just as much) in this world!

I am facing a huge trial right now, but it has been good for Rick. Although I have had to suffer tremendously, I would do it all again because he is finally realizing that family is so much more important than any material possession, no matter how much it cost him financially. He is finally starting to see that a dirty house is o.k. if I am feeling o.k. and I want to spend some quality time together then he makes it happen. He has even cancelled meetings at work to be with me when I am feeling o.k.  He doesn't get as angry over little things like he used to, but it is still a work in progress.  He smiles.His smile (his real smile) takes my breath away and I love seeing him truly smile. He has realized the importance of spending time with the girls. He is looking for hobbies they can do together. He is Mr. Mom., the Bread Winner, the Caregiver, the Chauffeur, the Errand Boy, etc. I would go through this all again just for Rick. Had I not gotten sick, I don't think that he would realize how important family is. I don't take him for granted. He is not perfect. I am not perfect. We both know that. We are always working on ways to improve our communication and understanding of each other, but we do it together. We attend a couples session every week if he is not working, and I think it is going to be good for he and I both.

Rick, Jamie, Scott, Savannah, Mallory, Callie, Mattie, my Mom, my Step-Dad, Joe, my Dad, my Step-Mom, Linda, Brittnie, Terry, Mysti, Rusti, and various friends have all been here to help us in one way or another, and I am so grateful to have them. We have our ups and downs but we will always be family. I love them all so very much. I have the faith that I will get better and I will be able to do the things I want to do, I will be able to plan my life. But for now, I take it as it comes. I try not to complain. There are times I am talking about symptoms I am experiencing, it is not complaining or attention seeking, I am trying to educate so that one will know when something is off. I TELL JAMIE AND RICK THAT THEY DON'T NEED TO WORRY ABOUT ME UNTIL I LOSE MY SARCASM AND HUMOR. WHEN I CAN NO LONGER FIND MY SMILE, IT IS TIME TO WORRY AND THEY NEED TO GET ME HELP!! FAST!!!

I didn't expect this post to be so long, but I just started rambling on. When I sit down to blog, I just open up and express whatever is on my mind. Thank you for taking the time to read it. I am o.k. if you ever want to share my blog with others. I really want to spread awareness about the seriousness of chronic migraines so that more funding will be made available for further migraine research. The stigma of migraines needs to be changed, just like the stigma of AIDS of Diabetes was changed. Together, we can do this!

LET'S GO TEAM CARTER!!!

THE LOVE OF MY LIFE!

About Time

The other night, my husband and I watched the movie, "About Time" with Rachael McAdams in it. I thought it was an incredible movie. At first I wasn't quite sure what to think, had a slow start, but turned out to be a phenomenal movie. In the movie, once the men reach a certain age, they are able to go back in time and get a redo, per say. They cannot go back to somewhere they have never been. For example,  he regrets asking a girl out on a date, when the opportunity was right there in front of him. He just had to go into a small dark room, like a closet, bathroom stall, etc. and he can go back to that exact time, but this time he asks her out on a date. The wives and women in the movie do not know that the men have the capacity to do it. As the movie continues, you learn more and more about what they can and cannot do. By the end of the movie, I was sobbing. I was like "wow"! that movie had such a great message.

We all know that we are dying, we start to die the minute we are born, we just don't know when and how. The movie left me thinking deeply about this. Would you want to know if you were dying soon, but didn't know exactly when you were going to die, or would you rather not know? This question leaves me so torn. In a way I would want to know, so I could make sure to make peace with whom I have hurt. I wouldn't waste an opportunity to tell somebody how I felt about them. But, on the other side, I wouldn't want to live each day in fear wondering if today, tomorrow, next week, etc. was the day I was going to die. Does it make it easier or harder on your loved ones knowing you are dying? Or is it just as easy or harder to learn of their unexpected death?

What gets to me, is that once somebody finds out their friend or loved one is dying, they make sure to visit them and be there for them. They make time for them, where as, if this same person were healthy, most people wouldn't give them a second thought until they hear of their passing.

Why must something tragic have to occur in order to check in on our loved ones, make the extra effort to make time for them, etc? Shouldn't we relish each moment we have together? Take advantage to tell the person how you feel about them, regardless of whether they are going to die tomorrow or in 20 years. I don't think I should pass up the opportunity to share how I feel.

I wonder, would it  be good to know when I was going to die so I could prepare my girls, or would this make it harder on them? Would it make it harder on my husband and my extended family?

Ideally, I would like to go to sleep and not wake up, die a peaceful death. I don't want to die a tragic death, but I know that I have no control over that.

I take the opportunity each day to tell my girls and my husband how much I love them. I tell my girls that no matter what happens, I will always be in their heart. I take the time to appreciate the little things. I don't worry so much about having the perfectly clean house. If I have the opportunity to spend some good, quality time with my family, making ever lasting memories or spending the day getting my house perfectly clean, I choose to be with my family. A dirty  house will always be there. When my girls get older, they won't care if the house was always clean or not, but they will care if I was there for them. Family is the most important thing to me. I want to make lots and lots of great memories.

I have a big heart. I love whole heartedly. I hurt easily. I am very sensitive. Sometimes, I think I care too much.

After much pondering, I don't want to know when I am going to die. I want to live each day doing what I love and enjoy. I don't want to ever pass up an opportunity to tell somebody how I feel about them before it is too late. I want to enjoy the little things. I want to be grateful for each new day. I don't want to pass up an opportunity to smile and laugh or find a way to get another person to smile or laugh.

As bad as I sing, I will sing every opportunity I get. I will sing like nobody is listening. I will never, ever pass up the chance to dance. I plan on dancing to my grave. I will dance like nobody is watching. I will cherish each day. I will make the most of each day, as much as I can, with the condition I am in. I don't think that a person should be sick or dying before you make the time to see them. Cherish today. Live for the moment. Love the little things. Never, ever pass up the opportunity to share your true feelings about somebody, as hard as it may be. Love life. Be happy. Smile. Always try to find the positive, no matter how small, in every situation. Don't be scared. Embrace life and make the time to call or visit your friends and family, without reason.

That's my two cents for the day! DANCE! DANCE! DANCE! AND BE HAPPY!

The girls and I being goofy and lip synching! We had so much fun!

I got script for Cefaly!

In a way, you could say that today gave me a glimmer of hope, because my physiatrist wrote me a prescription for Cefaly. Cefaly is a device that one wears on their forehead and behind their ears every day for 20 min. It sends electrical impulses to the trigeminal nerve area. It is used as prophylactic treatment for migraine. It is not intended to be used as an abortive treatment when migraine hits. 

I asked my physiatrist if he had ever heard of it, he had not. I explained it to him. Told him about the studies that were done and why the FDA approved it. He was blown away when he looked it up and confirmed everything that I told him about. I told him that I spend a lot of my time researching, because I am determined  to get my life back. 

He thinks it is worth a try, especially because the cost is around $300. I pay $100 a month for one of my migraine meds, Axert, so it's worth a shot. There is a 60 day money back guarantee. My physiatrist said that migraines are so complex that my bladder issues could all be migraine related. Our visit was so positive. He actually listened to my husband and I. He said that he is always willing to listen to his patients because doctors tend to get set in their ways and are not open to trying new treatments. I think he took me serious because I knew my stuff and I was being my own advocate.

I've got nothing to lose, so I look forward to trying it out. I have to send the prescription in and they plan on sending them out the first week of April. No nasty chemicals going into my body and supposedly no side-effects. Let's go for it!

I also ordered my cane today. It is an actual zebra sitting on a stick. It comes from Africa Art. It is pretty cool looking. I think if I have to use a cane, I might as well get one that makes me smile and I'm sure it will make others smile too, when they see it. I think the image alone of me walking around with Wonder Woman head band on my fore head and zebra walking stick is enough to bring a smile to anyone's face. 

No Spoons Left

Some days I wake up feeling pretty good, pretty good for me is a pain level of 8 or below (pain scale with a score between 0-10). Obviously 0 is no pain and 10  is excruciating, debilitating pain. I function, rucmcfrmnnnb eectss

The mumbo-jumbo written just above, shows you just have that the migraine is getting. I am speaking to Siri and having her write my post since I am having difficulty typing and seeing the words. I keep falling to sleep as a try to write about my thoughts.

I apologize that this is not a happy post.  I am having a hard time dealing with all of this lately. It's only taking me about eight hours to write this post. So,  it might give you an inkling of how difficult it is for me to see and type and do those types of things when I have such a bad migraine.

It makes life especially hard, when I am having such a good day, and then a level 10 migraine hits me full force out of the blue. It is difficult to go from feeling good, to having this excruciating pain where I just want to curl up in a ball and cry because I hurt so bad. I can do so much better when the migraine starts slow and I am able to medicate quickly so that I can medicate and do the things that I need to do to slow down that rapid progression of migraine. It is hard for me to even understand, so I don't expect you to be able to understand and fully comprehend the whole situation either. 

I pray that with some good sleep I will be able to function tomorrow and not live in extreme pain. Migraines suck! I am tired of migraines controlling my life! My goal is to take control and manage the migraine. I want to find a way to help all of us who suffer daily with chronic migraine and pain. All I have to say is that I hate migraine!

If only we could share this with our medical providers and anybody else that doesn't understand what it feels like to live with a debilitating migraine. YouGraine for the WORST HOUR OF YOUR LIFE! 

Today, I let the tear drops fall...

My plans for the day was to have a date day with my husband, because he had a day off and I was crossing toes and fingers that I would feel well enough to go out. Our date day turned out to be an outing at the Dr.'s office. My right leg keeps going numb, which causes me to fall. I have been falling more frequently, and most often it is out of the blue. My left leg has gone numb a couple of times, but for the most part it is my right let. My thigh has severe, burning pain. I am unable to lift my leg when I lie down, I am unable to raise my thigh when I sit down. No biggie, I've been working on strengthening it, but so far I am not winning. We ended up at the Dr.'s office today and he told me that I needed to get a "walking stick", either a cane or a walker.

We've joked about this for weeks, but mentally and emotionally I really didn't think I was there yet. My husband tried to take me to look for one after our appointment and I just couldn't do it. I broke down in tears and sobbed.

I am so confused. I have no idea where my life is going. I hate that I have become a hermit. I'm sure that if I were to die tonight nobody would even notice I was gone, other than my family and close friends that see me. I have been a hermit for over a year now and it is hard. More and more of my independence is being taken away from me. I don't know who I am anymore. My name is Amber, but I am not the same Amber that I was 2 years ago. I still smile, sing terribly, and attempt to dance when able, but it's just not the same. I am wasted space that sits in Grandma's chair and does research and work with Chronic Migraine Awareness support group. I will tell you more about that later.

Tonight I am feeling defeated, so, so defeated. I just want to curl up like a potato bug and cry my eyes out. Maybe after I unravel, I will find myself pain free. Living with daily pain takes so much out of me. But I try to do the best that I can. As long as my pain level is at an 8 or below, I can function. I don't dare drive too far, for my own safety as well as others. I HATE having to depend so much on others. I hate that I can't do the things I want to do. I hate that because of my stupid migraines my children and husband have to suffer. I hate that I can't be there for my family the way that I want to be. I hate that I can't plan my life.

I am 35 years old. I have to use a catheter to pee and now I have to use a "walking stick" when I am up and walking around. I am 35, yet I feel like I am 105. Please, just make it stop.

I heard this song tonight, and it just spoke to me.

Cefaly, a new migraine treatment.

There is a new migraine treatment called cefaly, that has been FDA approved for migraine treatment and prevention. It looks like a tiara that you were across your forehead. I have messaged my neurologist to see if he has heard of it and if he has, is there any positive or negative feedback on the device. You can but it in other countries, but you need a prescription for it in the U.S. It costs around $300. If it really works as well as it claims to, I will gladly pay $300 to get my life back. Below is an article and the the link from the FDA.

http://www.fda.gov/newsevents/newsroom/pressannouncements/ucm388765.htm

FDA NEWS RELEASE

For Immediate Release: March 11, 2014
Media Inquiries: Jennifer Rodriguez, 301-796-8232, jennifer.rodriguez@fda.hhs.gov
Consumer Inquiries: 888-INFO-FDA

Español

 

FDA allows marketing of first medical device to prevent migraine headaches 

Today, the U.S. Food and Drug Administration allowed marketing of the first device as a preventative treatment for migraine headaches. This is also the first transcutaneous electrical nerve stimulation (TENS) device specifically authorized for use prior to the onset of pain.

“Cefaly provides an alternative to medication for migraine prevention,” said Christy Foreman, director of the Office of Device Evaluation at the FDA’s Center for Devices and Radiological Health. “This may help patients who cannot tolerate current migraine medications for preventing migraines or treating attacks.” 

Migraine headaches are characterized by intense pulsing or throbbing pain in one area of the head, accompanied by nausea or vomiting and sensitivity to light and sound. A migraine can last from four to 72 hours when left untreated. According to the National Institutes of Health, these debilitating headaches affect approximately 10 percent of people worldwide and are three times more common in women than men.

Cefaly is a small, portable, battery-powered, prescription device that resembles a plastic headband worn across the forehead and atop the ears. The user positions the device in the center of the forehead, just above the eyes, using a self-adhesive electrode. The device applies an electric current to the skin and underlying body tissues to stimulate branches of the trigeminal nerve, which has been associated with migraine headaches. The user may feel a tingling or massaging sensation where the electrode is applied. Cefaly is indicated for patients 18 years of age and older and should only be used once per day for 20 minutes.

The FDA reviewed the data for Cefaly through the de novo premarket review pathway, a regulatory pathway for generally low- to moderate-risk medical devices that are not substantially equivalent to an already legally marketed device.

The agency evaluated the safety and effectiveness of the device based on data from a clinical study conducted in Belgium involving 67 individuals who experienced more than two migraine headache attacks a month and who had not taken any medications to prevent migraines for three months prior to using Cefaly, as well as a patient satisfaction study of 2,313 Cefaly users in France and Belgium.  

The 67-person study showed that those who used Cefaly experienced significantly fewer days with migraines per month and used less migraine attack medication than those who used a placebo device. The device did not completely prevent migraines and did not reduce the intensity of migraines that did occur. 

The patient satisfaction study showed that a little more than 53 percent of patients were satisfied with Cefaly treatment and willing to buy the device for continued use. The most commonly reported complaints were dislike of the feeling and not wanting to continue using the device, sleepiness during the treatment session, and headache after the treatment session.

No serious adverse events occurred during either study. 

Cefaly is manufactured by STX-Med in Herstal, Liege, Belgium.

For more information:
FDA: Medical Devices
NIH: NINDS Migraine Information Page

The FDA, an agency within the U.S. Department of Health and Human Services, protects the public health by assuring the safety, effectiveness, and security of human and veterinary drugs, vaccines and other biological products for human use, and medical devices. The agency also is responsible for the safety and security of our nation's food supply, cosmetics, dietary supplements, products that give off electronic radiation, and for regulating tobacco products.

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Be Mad At My Disease

This meme was made from a member of a migraine support group that I belong to. She does an amazing job, all credit goes to Susan J. S.

Living the life of a chronic migraineur

The following post is not something that I have written, but was written by Emily A. from migraine.com. A lot of what she wrote, is like she took the words right out of my mouth. I am a spoonie. I live with migraine every day of my life, some days are just much worse than others. I haven't given up hope. I know it is so hard for many to understand, because on the outside, we don't look sick. I do my best to show my brave face when I am in public. I can tell you first hand, that living with chronic pain day in and day out can lead to depression. I find myself getting more and more depressed as the days go on. I am in a relentless battle with time, my health, my life... What life? Hibernating because the pain is so intense that if I try getting up and moving around I will start vomiting, get very dizzy, light headed, short of breath and possibly fall if my leg goes numb. Did I choose this life? I honestly don't know, but I do my best to make the most of what I have. I take advantage of the days that I am feeling better. Sometimes I push myself a little too hard, and I know I will pay for it later, but I want to live my life. I don't want to sleep my life away. I want to be there for my girls. I want to make ever lasting memories with them. I take each challenge as it comes and I deal with it the best way I can. Humor and sarcasm get me through the really tough times. I still love to make people smile. I still love and care for others. I love serving others and helping them in any way that I can. I am very independent and it is very hard for me to ask for help. I feel bad enough asking people to drive my girls to dance on the days that I cannot drive. It is what it is and I will continue to carry on.

http://migraine.com/stories/realized-morning/

Things I realized this morning

Posted by Emily A—March 17th, 2014

I woke up this morning and cracked my eyes to the usual mind numbing pain that always greets me in the am. I have gotten used to the feeling that welcomes me to the day and have learned to wait for a 30 count before it hits. Sometimes I almost feel a little squeal of glee if it takes a full sixty seconds or gasp ninety before I get hit with my familiar friend.

Approximately 10 months ago I was diagnosed with chronic migraines. That day I was hopeful for the first day in a long time. After a yearlong cycle of a migraine day in and day out, visiting my doctor every month, trying every single medication under the sun, MRIs, and CAT scans. I finally had a neurologist look at me and give me an answer. Halleluiah! Now, I had been no stranger to migraines, often getting them for months on end but never one straight for a year and never one without any end in sight. So when I got the diagnosis and the decision for Botox I was certain. This is it. This will fix me. I am going to get these shots and all will be well.

  

My first round went fine giving me a slight respite, but my friend came back soon after and has subsequently been able to stand tough against the last two rounds of Botox. So I am now rounding out 2 years of the same migraine.

That’s what brings me to this morning; I looked in the mirror and finally registered what my doctor had said. He said Chronic Migraine. And that is what it is. It is a chronic disease that has to be battled every day. People will often say, oh yeah I have had a migraine I know how that feels. But imagine having that migraine, that you may have had for 4 or 6 hrs, maybe even a day, I have had it for seven hundred and thirty days give or take a few…..

One of the hardest parts of having a chronic migraine is that I don’t look sick. In fact chronic migraineurs try very hard for people not for people to know that they are having a bad day or avomiting in your head day, as I like to call it. But as Christine Miserandino tells in her, Spoon Theory, it often will take all our energy to do the smallest outing that we pay for the next few days. You can often tell us apart by the fact that we wear our sunglasses on cloudy days, can easily be distracted by watching the floaties and auras floating around you as you talk. Our words and thoughts often get lost or scrambled. And our intentions are good but our follow through is lousy. I always have grand plans of what I can do for the day, week, and month but often find that after I have made it through my first few tasks dealing with the roaring in my head makes it impossible. When I am out of my bed I dream about crawling back in it and covering my head to block out life. When I am in bed I day dream about what my life was like before. Before I realized the word chronic…..

It is very hard for chronic migraineurs that don’t look sick because they can be told, at least it isn’t fatal, or at least it’s not cancer. But chronic migraineurs have an extremely high incidence of anxiety and depression. There are many days that I sit and dream about the quietness that death could bring just for the release of the constant pain that is going on in my head. No I am not “suicidal” I just have a chronic migraine. I think that that is a thought very common in people with chronic conditions. Looking into the abyss of chronic, at times can feel like a long stretch in front of you. I am very blessed that my husband and children understand that mommy needs to spend a lot of time in a dark roomand that sometimes that they all need to be very quiet but it is very hard to tie them to this quiet life as well. One night the four of us were driving in the car and after admonishing them for being so very loud I asked my husband if they were as loud as they seemed to me. While he supported me to the girls, he quietly told me, no they weren’t that loud at all, and suggested maybe I should get ear plugs. I looked at him horrified. Didn’t he realize that’s where the pain releases? If I use ear plugs it will get trapped in there! Completely irrational but, that was my first thought!

I woke up today and had to admit to myself every day is my fight. There is no cure. There is no magic combination of pills and herbs and yoga positions that will suddenly take this away from me. Does this mean that I am going to stop doing and trying everything. Hell to the NO! But I can no longer sit down and pretend that the next treatment it going to make my life a completely different thing. I will always be either in this place or waiting to be in this place. So, if I can’t keep the plans I made, I apologize, and if I can’t chat on the phone please understand that if feels like you are shouting in my ear, if I haven’t texted you back I probably forgot it was there, if you really want to find me, you know where I will be huddled in my bed that is dark and quiet. Believe me I wish I were with you.

For a chronic migraine, there are no triggers, life is my trigger. For chronic migraineurs there are no cures, there are only patches that will get you through to the next bout. Have we tried, acupuncture, herbal remedies, diets, standing upside down on our heads? Yes. The answer is if we have gotten diagnosed as chronic migraines then we have tried anything, and if by chance we have been able to get up and put our mask on that day please let us wear it, under our sunglasses and large hats. It took a lot to get there, and ain’t nobody got spoons for that.

Reduce Stigma of Migraine

I take to credit for the information posted in this article. The link is posted below. I posted this for education purposes only.

http://www.healthcentral.com/migraine/c/680301/168155/reframing-migraine-reduce/

Reframing Migraine to Reduce Stigma, Increase Research

William B. Young, MD Health Pro March 19, 2014

• 
  
  
  NIH spends about 20 million dollars a year on Migraine and headache research. This may seem like a lot, but it is actually a tiny amount. If Migraine was funded like other diseases that cause a similar amount of disability, it would get from 200 to 400 million dollars a year. One reason Migraine research is so poorly funded is because of the social stigma of the disease. In a study of research funding of disease, the social stigma of the disease was an important factor in determining which diseases get funding. Disease advocacy was critical in reversing stigma and improving funding.
  
  
  Stigma is the extreme disapproval of a person based on a disease or characteristic. A person with a disease hears and experiences this disapproval which is called “enacted stigma.” Eventually this leads to internalization of these beliefs through a process of self-concurrence which leads to “internalized stigma,” causing psychological distress. For other diseases, there have been concerted efforts to reduce stigma. Good examples are AIDs and epilepsy. These efforts have been successful, and as both diseases were de-stigmatized, they got more research money.
  
  
  Several years ago I read a paper on measuring stigma in various diseases, and the very next day an intern in training at our facility who had a month of research elective asked if I had a project for her. So we measured stigma in episodic Migraine and Chronic Migraine patients in my clinic, and in epilepsy patients in the epilepsy clinic. On average, the Chronic Migraine patients had worse stigma scores than either the episodic Migraine or epilepsy patients. You can read the original article, "The Stigma of Migraine." You can also hear more about my research on stigma in this video:
  
  
  
  
  Patients who sit in my waiting room are not the average persons with Migraine – their disease is much more severe. More than 45% of the Chronic Migraine patients and 20% of the episodic Migraine patients were unable to work due to their Migraine. The epilepsy patients’ ability to work was similar to the episodic patients’. In large part, the worse stigma of Chronic Migraine related to its relationship with the ability to work. For both episodic and Chronic Migraine, there was no relationship with a person’s gender, age, or income: stigma hits everyone.
  
  
  Disease stigma can be reversed. In order to do this, we need an understanding of why Migraine is stigmatized and we need an effective plan on how to reframe it. Unfortunately, the ignorant public sees people with disabling Migraine as morally weak for not functioning normally despite their headaches, and having them because they did something wrong by not properly addressing their lifestyle. The disease itself is, bizarrely, perceived as either being easy or impossible to treat. Part of this comes from pharmaceutical companies who have touted their medications as very effective, undermining the very large group for whom they don’t work.
• Migraine gets lousy press. Sure, we get a lot of articles in women’s magazines on “holiday headache,” “foods to avoid,” and “sex and headache.” Unfortunately, these types of articles encourage the notion that Migraine is a nuisance disease, lead to misunderstanding for the journey of people with serious and disabling Migraine, and ultimately restrict funding for the research that will lead to meaningful treatments for people who really need them.
• 
  
  The other problem is that the pharmaceutical industry, along with the world of academic headache medicine has emphasized the large number of people who have Migraine, without differentiating the mild from the severe. Saying that 36 million Americans have Migraine (and implying they should be on an acute medication and a preventive) is good for getting investors to see the market potential of a drug, but it undermines the credibility of Migraine as a serious disease. At some level the public says that if that were the case, they should know dozens of people with that serious disease, and they believe that they don’t. There are two reasons for this misunderstanding: the epidemiology mixes in the a few Excedrin a year person, with the person who is on three preventives, uses 3 abortives and still has out of control disabling Migraine. The other reason is that people with Migraine hide what they actually have, and people around them don’t know what is going on in their lives, because of the social stigma.
  
  
  So what can we do about it? I believe the headache community must take responsibility for reframing Migraine into something that is both true and sympathetic. This should not be spearheaded by drug companies, but by the community of persons with Migraine, the doctors who treat them, and the scientists who study Migraine. But most importantly it should be done intelligently, and not repeating past mistakes.
  
  
  How do we reframe Migraine effectively? Any new frame must be very simple, and attention getting. The American Headache Society’s ad hoc committee on reframing came up with this new frame:
  1. Migraine is severe; it is common to lose a job or have a severely restricted social or family life due to Migraine, and
  2. People with Migraine are sympathetic, good people doing as well as possible in the face of unrelenting pain and associated symptoms. I would go further; persons with Migraine are heroic, carving out their best possible lives even when there is little effective treatment, and damn little understanding.
  The problem for now is how do we study a new frame? How can we know it is going to help, before we make a concerted effort to gain acceptance for it? We need to determine the most effective frame that leads to what we all want: more understanding of the disease and help for the person who has it, more research, and better treatment.
  
  
  If we can study a series of frames, find the one that is most effective and all get on the same team in changing the perception of Migraine, then Migraine patients will be less stigmatized, research will get funded, and the lives of all persons with Migraine will improve.
  
  
  William B. Young, MD, FAHS
  Professor of Neurology, Thomas Jefferson University
  President, Alliance for Headache Disorders Advocacy

- See more at: http://www.healthcentral.com/migraine/c/680301/168155/reframing-migraine-reduce/#sthash.F5XeI6cD.dpuf

8 Things Everyone Needs to Know About Migraine

The article below was written by Keri Smyres, I take no credit for the information posted. I am posting this as another piece of education about migraines.

http://migraine.com/blog/8-things-everyone-needs-to-know-about-migraine/

8 Things Everyone Needs to Know About Migraine

Posted by Kerrie Smyres—March 8th, 2014

Everyone, whether they have migraine or not, should know these eight things about migraine.

1. “Migraine” is not synonymous with “bad headache.”If a person has a bad headache, they do not automatically have a migraine. Migraine is a neurological disorder that 12% of Americans¹ have and research increasingly shows that it is genetic. When someone “has a migraine,” they are experiencing an attack of this neurological disorder. If someone does not have the underlying neurological disorder, it is impossible for them to have a migraine attack.

2. Head pain is not the only symptom of migraine.Impaired vision, nausea and heightened sensory sensitivity (to light, sound, smells and touch) are the most well-known migraine symptoms. But, because migraine is a neurological disorder, its symptoms can be felt in any part of the body – it can increase the frequency of urination, change blood pressure or heart rhythms and cause nasal congestion, brain fog, mood changes, temporary paralysis and many,many more symptoms. Not everyone has all of these symptoms and they can vary in each person during different migraine attacks. It’s even possible to have a migraine attack with no pain at all.

3. For 90% of people with migraine, attacks are disabling.World Health Organization research found that the pain phase of a migraine is as disabling as quadriplegia². This may seem melodramatic or impossible, but most people who have endured a migraine understand how accurate it is. Moving exacerbates the pain so much that even scooting over an inch in bed can be too painful to bear. Getting up to go to the bathroom or to get medication from another room can be nearly impossible.

4. Painkillers are not a panacea.Over-the-counter or prescription painkillers help some people during a migraine attack, but not the majority of us. And “help” usually means that it reduces the pain somewhat, but does not eliminate the migraine. Adding caffeine to a painkiller tends to make them more effective. In addition, painkillers and caffeine can have a rebound effect, ultimately triggering more migraine attacks.

5. A migraine is not over when the most painful phase passes.There are four distinct phases of migraine. The part most people are familiar with is the third stage, which is the most painful. The fourth stage is postdrome (or migraine hangover) and, while not as painful as the third phase, can feel as horrible as influenza, including a headache, heavy fatigue and impaired thinking. Postdrome usually last longer than the acute phase and, for some people, it can drag on for days.

6. During a migraine, thinking and finding words are difficult, decision-making ability is impaired, and a person can be extremely irritable.These are among the migraine symptoms that few people recognize — even some people who have migraine don’t know about them — but they can have a huge impact on our interactions with others. Carrying on or even following conversations is difficult and we often seem angry when we’re not. This is partly due to pain and feeling horrendous, but the neurological activity in the brain during a migraine is the major culprit. Even when the pain lets up, it can take a while for our thinking to return to normal.

7. People who have migraine are not more stressed out than those without migraine.Stress is unavoidable and it affects people in different ways. For those with underlying medical conditions — migraine, heart disease, rheumatoid arthritis — stress may cause a flare up of that condition. For those who are otherwise healthy, stress can make a person sleep poorly, eat too much, or have a hair-trigger temper. Anyone, whether they have migraine or not, can benefit from learning to better cope with stress. It’s not that people who have migraine don’t manage stress effectively, but that migraine is sometimes their body’s response to the stressors that are inherent in being human. Many migraineurs don’t find stress to be a migraine trigger at all.

8. Lifestyle changes are often beneficial for people with migraine, but they aren’t always sufficient.Dietary changes, exercise, eating at regular times, keeping to a sleep schedule and meditation can all help in the management of migraine. (All of those things could also probably improve the lives of people who don’t have migraine.) These changes alone are rarely enough to stop the migraine attacks completely. Also, some people have migraine attacks that are so frequent and severe that lifestyle changes are impossible to implement.

 

Now in her late 30s, Kerrie has had chronic migraine since she was 11. She's been writing about migraine and headache disorders on her blog, The Daily Headache, since 2005. Kerrie is also the cofounder of TheraSpecs, which makes eyewear for migraine and photophobia relief.

VIEW ALL POSTS BY KERRIE SMYRES

Another MRI

A couple of weeks ago, I told you that I was going to tell you all about my journey, since I sort of started this blog in the the middle without a background history. I still intend to do that, but I have not done it yet. I have been really struggling emotionally and mentally and I can't seem to make myself sit down and write about it. In my head, if I don't talk or write about it, then it isn't real. None of this is really happening. Truthfully, I know this isn't the case, but that is how I dealing with it all right now. I am shutting it out instead of facing it. I know this is not healthy, but for today, this is what I have to do.

Wanna know the truth? I am scared shitless, I apologize for swearing, but there is no other way for me to describe it. I never know what tomorrow will bring, let alone a few hours from now. I live in fear every day, every moment, not knowing what is going to happen. I try to keep my brave face on and keep moving forward, but I am having a very difficult time doing that right now. I find myself crying... a lot. I have become this hermit that shows her face for doctor appointments, to pick up prescriptions and events that my daughters are in. We leave as quickly as possible. I have to depend on others, frequently, to drive me somewhere because I am unable to drive most days.

I think that I am grieving. I am grieving because I am not the Amber that I used to be. I am not the Amber that I want to be. I feel like I am just taking up wasted space. I don't know how else to say it. Pain has changed me. Living with severe pain on a daily basis can wear one down in a hurry. I wish I could say I was a drug addict, because I can fix that. No, I am not a drug addict. I rarely take any narcotics, because I know they can do as much damage as good.  I do take valium at night, for two reasons: 1)I clench my jaw when I sleep, it is supposed to help that, 2)Anxiety, I have had anxiety most of my life. We have learned that my body sleeps, but my brain does not. So, I have to take something at night to calm my brain down so that it can sleep. I also have ambien that I take if I am unable to fall asleep after 15 minutes. Recently I have had more nights that I don't take it, then I do. I have found music therapy and meditation to help me. I am not ashamed to say that I need help sleeping. Sleep is a huge contributor to my migraines.

I am seeing a new neurologist, Dr. Robert Hoesch, because Nina Riggins is gone. He referred me to a Neuropsychologist that works in his same office. His name is David Ranks. I have one on one sessions monthly. He does a meditation class every Wednesday that I attend, when I am able. He also does a couples therapy class every Wednesday that is amazing. Rick has agreed to go with me on the days that he does not work. I can attend the class by myself if he has to work.

I am also seeing a Neuro-Physiatrist, that works with Dr. Hoesch, to see if he can help me with my bladder issues. When I had my first appointment with him, he walked in and was very quiet as he looked over my records. Then he looked up and said "I am stumped, you are a zebra"! He is now the second doctor to call me a zebra. A zebra is a term used in the medical field when they cannot figure out what is wrong with the patient.

For now, Dr. Parley Williams, the Physiatrist is trying to retrain my bladder. I have to go every 3 hours. If I can't go independently, then I have to cath. I have to keep accurate records of my intake and output. So, basically, I get to be my own nurse. More details on this later.

I have to go for MRI first thing in the morning. This will be my 5th MRI since October 2012. This MRI is of my spine, focusing soley at the base of my spinal cord, contrast will be used. It's not the MRI that I fear, I actually find MRI's to be very relaxing because of the rhythmic beats. Since I am a music connoisseur, I distract myself by focusing on the rhythm and beats per measure.

I am having this MRI because I have had several bad falls from my leg going numb out of the blue. It used to be my right leg only, but my left leg has started as well. My right leg is by far more worse than my left. I woke up this morning and I could not even feel my leg. I knew it was there because I could see it, I just couldn't feel it. I have also been having severe back pain. Plus, nobody has been able to figure out my bladder issues. I hate that everybody is stumped and that I am the statistic. Why can't I be cut and dry, just once?  I am scared. I am so frightened. I don't know what is in store. All I know is I am finding it harder and harder to find my brave face. I cry over everything.

I AM SCARED OF THE UNKNOWN!