so many of you know i had a visit to the er about a week and a half ago. i have not blogged about it because honestly the whole thing was miserable. and miserable is not even the right word. i honestly felt like poor green haired anne as i moan it was the pit of despair. then i hear dear mirial warn to despair is to lack God. and might i say for a moment i was so out of my head, i am not even sure i could grasp onto the smallest amount of faith. my head is clear now. i feel like i can write about the whole experience. but let me say this post may be slightly untamed. for the sake of being truthful, i will do just that. i think that is why this post has been so hard to write. i have seen a side of me that is hard to admit even exists. but someone, somewhere may need to hear this. they may think they have too lost their mind. and i tell you if your story is like mine..."you.are.not.crazy!"
one thing i know about myself is i have never tolerated meds well. i am allergic to many, and most just make me feel miserable. when i was in hs i was diagnosed with endometriosis(a horribly painful female issue). one of the only things to help with pain is birth control. i hated the idea of being on it. but reluctantly took it. my hair started falling out in clumps. i saw this was a side effect and told my doc. his response, "oh don't be silly! that side effect never really happens to anyone." I reached up, ran my fingers through my hair and showed him. his eyes became big and he believed. i came off those meds and never tried them again.
so when all my pain started with my head and neck, i talked to the doc about meds. before surgery i was taking vicodan, and she also prescribed me an anti depressent. not because i had slipped into the "pit of despair", but because anyone going through what i have gone through could and would most likely be depressed. this managed my pain and emotions fairly well before surgery. after surgery, i was put on much stronger pain meds. morphine in the hospital gave me hives. i suffered through the hives because i needed the morphine. then they sent me home with percocet. it did nothing, and i do mean nothing. it was as if my body did not even recognize i was taking pain meds. so i quit taking them. this is when i was admitted back to hospital and they tried to manage my pain yet again with morphine. then they sent me home with oxycodone. this managed my pain well, and i thought all was ok. but i felt foggy, and irritable. my pain was ok, so i pushed through...for weeks. then i started getting these headaches. the only way i can explain it is like my head was exploding, and that is putting it mild. i had 2 of these headaches and all i could do was roll around in bed and moan. i kept a bucket close to puke in, and then moan some more. i know not pretty...see why it is hard to blog about? then on thanksgiving i became really sick. i could not keep any food in. i thought it was the flu. but it drug on until the monday after. by tuesday it was hard to even hold my head up, and i was so ill. my sweet friend came over with chicken, broth, and mashed potatoes. her and i decided i needed to heal with good wholesome food.
that night, that tuesday, was the worst night of my life. if you think i am being overly dramatic...i am not. it is hard to even put in words because i can't explain everything i felt. but if you have been through something similar, you will understand. i ate a healthy meal, and took my meds (pain ones included) that night before bed. at 3 or something (i really have no idea what time it was) i woke up in so much pain. i knew as soon as my eyes opened i needed help. i dialed my mom's number and whispered into the phone, "help" i heard her say, "i'm coming." i hung up and dialed 911. i think i may have yelled help into the phone before i fell on the floor throwing up. my heading felt like it was cracking open. i wished more than anthing this was a night tim could be here. i yelled for aidan. sweet boy came running and talked to the 911 dispatcher. i vaguely remember poor brooke trying to comfort me as i army crawled through the hall, throwing up every couple of inches. my body was spasming all over. i was literally yelling. i do not yell when i am in pain but i was. i could hear myself but could not stop. i was sweating and just praying that God would rescue me.
when the ambulance came, i was still throwing up and screaming. they kept asking me questions which i tried to answer and know i did a terrible job. i kept hearing them say, "it's a migraine." and i kept saying, "no my head is exploding." in this moment a mother should worry about her children. she should fear the trauma they are being exposed too. she should jump up in her own pain and comfort them. i did none of these things! i just laid there...i just prayed as best i could to watch over them until my mom got there. thankfully a fireman sat with them. my mom and dad came, and they comforted my kids. the ride to the hospital was excrutiating. i do not remember much except continuing to be sick and screaming. When i was taken to er, it went from bad to worse. i do not really remember the first part well. i just kept hearing migraine, and turn the lights out for her. i was covered in my own sickness, and they never once came to change me, or wipe me off. at one point a nurse came in, flipped on the lights and said, "listen, you better start talking straight or we can't help you!" I just stared at her and moaned, "my head". the doc came in and said, "so you have ms." "no eds." "what is eds?" "Ehlors Danlos Syndrome, it is a connective tissue disorder. i had a c1-c2 fusion in september." "ah that would not being causing your headaches. it's a migraine. will give you some pain meds and get you out of here." he never checked my incision for leakage. he never drew blood to check liver function. they barely gave me an iv fluid, just ran the line so they could give me 2 shots of dilaudid(pain med) and phenergan to keep it down. my mom came in and started washing me off, finally!!!! the pain meds made that terrible pain in my head subside. i lay there barely able to move, but finally quiet, and restful. another nurse comes in and says they have my discharge papers. now we had to wait for my dad to come get us because he had taken all the kids home. we asked if we could wait in room. response- "you have to understand, we need the room." ok, upset, but maybe they are busy. so me in my super nasty clothes, and no shoes or socks...oh wait they did give me slipper socks, plopped my body down in a wheelchair. my mom, very irrate at this point, wheeled me to the waiting room until my dad came. the waiting room was completely and I mean completely empty. i laid my head on my arm and closed my eyes.
now i know some of you may be saying, "oh melinda the medical profession sees all kinds!" you know what..I DO NOT CARE! i am human! I do not care what my life history is, i do not care if every doc and nurse in that place was having a bad day, i do not care! you may think i am being harsh, and you know what, i am! it was all horrible! i left there not knowing what the heck was wrong with me. i was scared i could have a csf leak somewhere. i was scared that horrible headache would come back! it was unacceptable!
that afternoon i talked to my friend monica, who is wise and wonderful! she made it all make sense. she reminded me that people with eds do not process meds well. she told me there was a good chance my liver had not filtered the pain meds like it should. the pain meds may have built up to toxic levels. then she said what made complete sense to me...it was like i was going through withdrawal. my brain clicked on...yes! it was like all those crazy tv shows i watch where people coming off drugs can't control themselves. that is how i felt. it was like my mind and body were not one, and there was nothing i could do about it. it was scary beyond belief. that is where i knew i was. i felt i had a plausible answer, and after talking with a few of my docs, i decided to see if it was true. i basically detoxed my body. i not only quit the pain meds, but also a few other meds i was on. and to really clean my liver out and keep the inflammation in my body at bay, i gave up sugar and gluten. not any easy task! The first 3 nights were miserable! i was no dainty pretty lady those nights! I sweat out more water than was going in my body. I walked and paced back and forth....wanting to run a marathon but not feeling able. my brain raced, and the tears flowed like crazy. i was scared and prayed so much. again, this may sound dramatic, and well it was. it is crazy what my body was doing. 4 days after all of this my head, for the first time in a while, felt clear.
it has been 10 days, and i feel amazing!!! no i am not all better. i am still in pain. the pain did not leave. my neck hurts and my hip, knee, and neck are popping in and out of socket. by night, i hurt all over. it is hard to sleep, and quite frankly i have been kind of grouchy to put it lightly. but i am still getting quite a few meds out of my system. and i still need to take some. i am trying to work with my medical docs, as well as find natural ways of healing(which is a story for another day). this is a lifelong journey. but i have learned something, when i fall into "the pit of despair", look up- there is an hand reaching down. i know this was a terribly long, and quite horrible(in more than one way) post. i just felt it was important to write. it is important because someone else may be suffering like me, and no one will listen. that is a really hopeless feeling! don't give up, keep searching. we have to fight for our medical care. there are amazing docs and nurses who take their oath seriously! hold onto that until you find them! many blessings!