Happy Valentine's Day, My Dear, Butt Kicking, Pain Ensuing, Endless Suffering Jack Of A Migraine!

I had the pleasure of spending my day at LDS Hospital getting a migraine cocktail that insisted of Magnesium Sulfate, Solu-Medrol, Toradol, Phenegran, and a fluid bolus.

I went to my neurologist on Tuesday to receive a nerve block for a migraine that was on day 20 at the time. He injected lidocaine, bupivicaine and decadron via both occipital nerves. He told me the lidocaine should kick in right away, but it takes about three days before I would know if decadron was going to work or not. He told me to call him on Friday morning if I wasn't feeling any better. He told me that he would be out of town, but he would have the order all written out and ready to go if I needed to go to the infusion center on Friday. The whole purpose of going to infusion center is to avoid the "rig 'em 'n roll" of the ED.

Friday morning rolls around and I am in excruiating, debilitating, help me, I wanna die pain.(just to clarify, I am not suicidal).  My husband called the Neuro-Science Institute (which is where my neurologist is) at 0800 and he got sent to the voice mail of Dr. Hoesch's CMA, Mo.  Rick left a voice mail. Waited two hours, and called again. He got sent to the voice mail of CMA, again. I also sent a message via "My Health".  By noon, we still had not heard from anybody. My husband came and woke me up. Their office was closed at this time, as it was lunch time (don't they know that people still get sick during lunch hour). My husband even called the infusion center and they told him that they had to have the orders before he could make appointment. And don't worry, my opinion about this whole ordeal will be heard. Patients should not have to play the game of you call here first, but we can't talk to you until this time, and so and so is gone today so we can't help you.  I told Rick I would wake up and shower so we could be to their office at 1300 (1:00 P.M.) and maybe have better luck.

This is what I looked like yesterday when my pain level was down to a 7-8.

We got to the office and Mohammed, the CMA said I could just go to the infusion center. I questioned him because that is not what Dr. Hoesch told me on Tuesday. He said that I needed to call the Neuro-Science Institute so they could get the paperwork ready to fax infusion center,  and so I could schedule an appointment. He said the Infusion Center at IMC is sometimes full, but I could go to other infusion centers throughout the valley if that were the case.

 Mo was like, really? "O.K., I will call them right now". He called them and they were full. He told me that I needed to call two to three days in advance for appointment at the infusion center.

Me: "Oh really, I'm just supposed to predict when I will be plagued with yet another debilitating migraine?"

Mo:"You could just take the paper to the ER and they could do the orders in the ER."

Me:  "I appreciate that, but the whole purpose of the infusion center is to get migraine treated quickly, quietly, and as effectively as possible without causing more stress, pain, and anxiety for the patient. Will you please call Alta View Hospital and LDS Hospital to see if there was room at their infusion center?" (sound anything like Amber, the CN?)

 Mo comes and tells me that McKay-Dee had some beds available.

Me: "I'm sorry, but I can't go up to Ogden. I asked you to call Alta View and LDS. I appreciate you calling McKay, but we can't make that work today.  My husband has to be able to get my girls from school". Another 10 minutes goes by and Mo comes back to tell  me that I can go to the infusion center at LDS hospital, but I had to register before I got there. "OK, thank you".

I called and registered on my way to LDS hospital as it takes 25-30 minutes to get there from where we live. IMC is not too far from our house. I arrived and they were just finishing up the registration paperwork. I gave them my copy of updated medical information (the one I make that has meds, allergies, medical providers, past medical and surgical history). Even with migraines, color coded, nerd sheet Amber lives on!!

They wasted no time getting my treatment going. I had my snuggly and my rice bag with me, of course. The tech was even nice enough to warm my rice bag up for me, even though I told her she didn't need to. It is just a comfort thing to lay across my abdomen.

The nurse, Jeanne, was one of the best nurses I have ever had. She was so sweet. She sat in my room and talked with me for over an hour. Her son had rhabdomyosarcoma and they lived at Primary Children's Hospital for over a year. To date, he is the only child that has lived past the age of 10. He is 15. She said they have been studying the success rate for about 50 years, and her husband is involved with the research. I love hearing great success stories like that. She was amazing. We talked about everything from our favorite authors, to the things they don't teach you in nursing school, to fun family traditions, etc. I also warned her about my unstable cognitive function, where I can go completely blank in the middle of a conversation and then have no clue whatsoever what I was talking about. I told her that I can also speak jibberish and become disoriented. She thanked me for warning her, other wise she would have freaked out. I told her, still have to do the stroke test, (smile = for example).   She kept checking on me every 10-15 min.

She said she was so sorry that I haven't been able to work in over a year and that I have to use a straight cath to drain my bladder. I told her, "don't be sorry, we all have our challenges, and this just happens to my challenge at this time". I told her, there is nothing I can do to change it. I accept it and I keep moving/dancing forward.  There are so many people out there far worse off than me. I am not expecting sympathy, I am just trying to change the stigma of migraines, and if my pain and suffering helps raise awareness and change the stigma, then I did not suffer in vain.

So, yeah, life can be hard, but we all know that. We all know there is no such thing as a perfect life. We all have our demons we are battling. Some are more open than others. I am more open, because it helps me psychologically. It is hard not knowing when I will have a good day or a bad day. The NOT KNOWING anything right now is so extremely scary for me, but I can't waste my focus on the what if's. I need to focus on what is right here, right now and if I can do anything about it.  I don't write or talk about a lot of things, because "if you don't talk about it, or write about it, then it never really happened or happens, right"?

I spent the day at LDS hospital, but it was a pleasureable experience with an angel for a nurse. I don't expect miracles, I just want to live as normally as I can, with the situation at hand.

Lying in bed at the infusion center. Plugged into my headphones, playing the music that calms me and relaxes me. Cold sore and all. (I desperately need my hair done).

The IV with different meds being Y'd in.

I still don't feel great, but I am not complaining. I think I kinda look like a little kid in this one, scared and vulnerable.

Mallory and Savannah came after school. I had to have oxygen for a little while, but I am ok. 

Sadly, thanks to Mommy's migraines, plans were cancelled, yet again. We were going to have a family game night. I was going to make my famous corn chowder. We were going to have a family night, free of any electronics, but it is just on hold for now. I promised my girls we would do it, and I surely don't want to break a promise. I am sorry that my girls have a Mom they have to worry about so much, a Mom that can't make plans far in advance, a Mom that can't do and be all that she wants to be for them. But, they know I love them. They know I am a fighter. They know I am strong. I just have a couple days here and there where I let the guilt, of all of the above, get to me.