If someone would have sat me down, back in March, and told me that I would be where I’m at now…. I’m not sure I would have believed them. My life was going wonderfully. It was my birthday month. The first three months of 2014 had been amazing, on every level possible…. Still had rocky moments, but that’s life. I didn’t want to leave that place I was at. I had written some difficult articles on this blog. I had been getting in touch with my Beautiful Me. No, I was firmly in touch with my Beautiful Me! Who would want to leave there?
These last 17 weeks of my life have been some of the most trying I have had to face. I decided that I would attempt to write about what has been going on.
Now, for those of you who don’t know, you will have to forgive my writing. There will be plenty of typing mistakes I will miss, and sometimes my sentences may not make sense. You will understand why in a moment. So please, bear with me. I just feel like this should be something that I write about and share. Maybe my struggle, like any other struggle in my life, can help someone else.
Also, though it goes without saying, I will say it anyway! My experience should not be used to diagnose anything! This is simply what I have been dealing with and my journey that I am sharing. If it helps you, great! Just please, use your common sense and seek medical help if you need it!
And now, for the story of the last 4 months. Wait, maybe I’ll break it up into months. As I have kept notes about so many days as I have gone along. We will see how it unfolds.
Without further adieu…….
My life has not been the same since March 30, 2014. I got sick that morning. I was feeling under the weather, so much so that we cancelled our weekly podcast that my husband and I do. You know it’s bad if I do that. Doing that podcast was one of the absolute highlights of my week. March 29 was the last “good” day I have had since that day. Everything simply spiraled downwards from there.
April 2 was spent in bed. I could barely move due to the severe headache I had. I had to keep my eyes covered. I couldn’t eat, and I could barely drink. I ended up finally coming down to join the family at around 4pm that afternoon. My head still hurt so badly, but I could at least be upright at this point.
Since that day my headache has never gone away. No, really…. never. I have not a single, solitary minute of no headache. It started that day and has been tormenting me since then. There is not a moment that goes by the my head isn’t pounding, and I’m not in pain.
Shortly after that day, approx. a week later, I started getting extremely nauseous. A week later I started throwing up. In the span of 5 weeks I lost 15lbs from my lack of being able to eat. I was able to drink , for the most part, but even that was a struggle some days.
Now where the fun… wait, fun? No… “fun” begins. Back in February I had made an appt with my Dr. It was my initial visit being that we were new to the area, I had new insurance, etc. Given that our state, Oregon, chose to roll out the full intended insurance from the ACA and expand Medicaid for adults, the Dr’s in the area were SO backed up with new patients! So, my phone call in Feb. got me an appt. on June 24.
Fast forward to April 18. The pain had gotten to be to much. We called the office of my new Dr, but since I had not had my initial visit yet they couldn’t so anything for me. Off to Immediate Care I was sent. Thus began my joyous experience with Immediate Care and ERs. Sigh.
I was given multiple medications at Immediate Care and it didn’t even kind of make a dent in the pain. Actually, it did nothing. I was given the option to go home and see if it might kick in later, or head over to the ER. They highly recommended I visit the ER. So, over to the ER we went. I was given another round of much stronger meds this time. It relaxed me but didn’t take down the pain much at all. CT Scan and bloodwork was done. Everything came back clear. I was given an RX for Zofran, 800mg ibuprofen tabs and oxycodone. I was also given a referral to a neurologist and an ENT(for a small cyst found in my nose). My Dr, whom I had yet to see, approved neurology and denied ENT.
My days passed in a dug induced haze. I was simply trying to cope with the pain. I was trying to get through, all the while hoping and praying that the headache would just go away. Sadly, that is not the case.
April 25 we were back at the ER. There was no approval of neurology, no ability to move my Dr’s appt sooner. I was out of pain meds and in severe pain. This Dr refused to give me a migraine medication of any sort. He didn’t even want to give me more oxycodone. He said “I’m sorry but I just think you need to learn to ‘tough it out'”. He finally gave me a little more, but essentially said that I was fine.
By this time, prior to my second ER visit, I was taking 6-8 oxy/day just to make it through. I didn’t WANT to, but there wasn’t any other way for me to deal with the pain. OTC meds were NOT working, and Dr’s were telling me that there wasn’t anything wrong.
The next day a miracle happened, and I was given my approval for neurology. Yay! May 13. Wait. What? That was on April 26. I had another 17 days to wait until I could see the neurologist. Sigh.
My headaches had gotten worse at this point. Little did I know that I hadn’t felt anything yet. Joys. I called my neurologist office on April 30. I was almost out of oxy again. They told me they couldn’t give me anything, and that I would need to go back in to the ER. So… back we went.
I ended up in tears at the end of this ER visit.
Actually, let me pause here. I have had so many moments of feeling utterly hopeless during all this. From people telling me that I’m fine, to people telling me that it “can’t be that bad”, to Dr’s thinking it’s all in my head(no pun intended), to the implication that I can’t have a headache “ALL the time”(newsflash buddy…. I do. 24/7), to feeling like this is never going to end, to feeling… literally… like I’m going to die. It has been a battle of wills. Just keeping my nose above water during those darker times.
So this ER visit was my last for my migraine. Wait, no…. I was informed at this ER visit that I wasn’t allowed to call it a migraine. It was simply “a headache”. The Dr I saw that night refused to give me any medication of any sort, including the Zofran for my nausea. It didn’t matter that I was throwing up, she wouldn’t give me more. She also refused to give me migraine meds, or pain meds, of any sort. My appt. was still 12 days away. She informed me that I wasn’t avoiding my triggers, that it wasn’t a migraine(just a headache), and that I needed a way to manage the pain, not just mask it. NO KIDDING!?!? Why do you think I came to the bloody ER???? *insert look of annoyance* I was given 6 oxycodone pills, wished me luck, and sent home. She didn’t tell me that, by law, she couldn’t give me anymore oxy. She just said she wouldn’t give me anymore, or anything for that matter.
Ok. Let me tell you something. Taking oxy as much as I did had me hooked on the pills. I didn’t really grasp this until I was down to those 6 pills. I had to get off of them, and get off them in a hurry! Introducing the “fast detox”. Oi. I took 2 pills the first day, 1 pill the second day, 1 pill the third day, 1/2 pill the fourth day and 1/2 pill the fifth day. I left 1 for emergencies.
I can’t begin to tell you how awful it was coming off of that stuff. I was sweating, shaking, and weak. I felt like death. I just…. there are no words to express how horrid I felt. Not even close. I was so glad to be off of those pills. They are NOTHING to play with. I hadn’t wanted to take them in the first place. I just wanted to be better.
Oh yes, and let me tell you.. there is nothing worse then something like this when it comes to the doctors you face at the ER. I was treated as someone who was simply “trying to get meds”. Even though that was the FURTHEST thing from my mind! I even asked them for migraine meds, as opposed to the narcotics, but was denied. I wanted them to FIX ME! Not drug me!
So that is Part 1….. Part 2 is probably going to take a bit to get out here. Will probably sum it all up in the next post.