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!