You know it's funny that I've always said I'd never make a blog on narcotics and CF, and here I am doing just that. This may be a bit wordy, I apologize now!!!
For a little back story let's go back a few months maybe even years. As I progress in my disease being "end stage" and no transplant option, my lungs get worse. My breathing gets more complicated and the pain associated with it continues to climb.
One thing I have always been proud of is my way of pushing through this pain and only using pain medication during hospitalizations. Sadly that needed to change recently.
☆I would push through the pain all of these years, because I pretty much had to and it's wasn't as bad as it is now. My particular CF makes it difficult to absorb ALL oral medicine properly. Not all CFers have this problem, which is just another sign that we are us first and the disease second. That problens makes it scary to double or triple pain meds at home in hopes that they work.
As many of you follow me and know my ups and downs as of lately, you know my health has made a downward spirl. Making the days at home harder and harder to cope without pain control of some sorts. Long story short I was proscribed home IV Diludid along with home IV Benadryl, as I have an allergy to the Diludid.
With this combination at home I have been able to have a better quality of life and could even lower the amount of oxygen I needed do to less pain. Taking Benadryl regularly has acted as a bronchial dilatator opening my airways making it possible for me to accomplish what I try to do. It has also had an effect on my mood and with the everyday activities I was having such problems with. Like showering alone, cooking, walking my dogs, going to the mall alone, caring to do my hair and makeup, and so fourth. Of course I still needed to wear my o2. No miracles here!
☆This combination of a small dose of narcotics and an antihistamine has been a game changer in my life these past few months. One that I would love to figure out how to do a medical study on the matter. More so with the side effects of the Benadryl and my lungs.
Here comes the monkey wrench!!!! My life is CRAZY. Things happen that would never happen to anyone else, but me. I have found myself in so many unbelievable situations that if I wasn't there and there wasn't some type of report of these things I would not believe them either. So, that being said I have needed my meds sooner on some occasions do to out of town trips, doctor appointments (before I found out the infusion company was in my town), court dates for one of those Sandi only situations, a nurse jumping the gun, and hospital stays that left me with them being thrown out while I was hospitalized. Another long story.
☆Trying to make this a short story bare with me here.
Last Friday I was discharged from the hospital! Discharge papers in hand, PORT pulled, street clothes ON, ride at the door. A doctor came in telling me how to follow up with blood draws for the levels of the IV antibiotics at my PCP ' office. She told me that everything was good to go. Before she could leave my room another doctor came in and said, "We pulled your discharge you have to stay here until Tuesday to get your IV antibiotics approved through your insurance for home health. The fact that it was the holiday weekend and the end of the work week they wouldn't get to it until Tuesday."
I was PISSED! Here I stand discharge papers printed and signed in hand! Being told that my health didn't warrant urgency to those who work 9-5 Monday through Friday at the insurance companies, because they had a holiday weekend. Staying an extra 4 days could jeopardize my health being in a hospital environment after I started showing progress, which I didn't want to risk!!! The doctor then informs me if I didn't stay I would be leaving AMA. Well, I was angery, upset, and irritated. I had my discharge papers, so I left! That's when all hell broke loose.
What I did not know was that the infusion center had gotten the antibiotics approved that same night at 6pm. I, however, was never called or told that they had gone through. I thought the antibiotics wouldn't be worked on until Tuesday as that is what the doctor had told me. So, I waited until Tuesday and no call. Wednesday rolled around and I called and was told I was no longer allowed to receive medications from them because they believed I was "Lying" and trying to "doop" them for the pain medication. Which, I can assure you is not and never has been the case.
I then later get a call from my Dr. at Ruby Memorial who proscribes those medications for me, knowing I need them. Knowing I am not a drug seeker. Yet, he has now decided to not proscribe anything else for me and will be making a note stating I have a "history" of narcotic drug seeking. I was told to go to Chestnut Ridge for addiction issues other than that he was no longer working with me.
☆I'm not addicted to them, so that wouldn't even help. I admit when we first started this course (Back in Feb.) I was having a small problem, but I pushed through and fixed it with the help of my husband and an amazing friend talking with me.
☆Here is what all my babbling is about right now, sorry! I said stay with me.
Because, I have a life where my roller-coaster derails almost every day. I have things that go on that I can't explain and it may sound fishy, sadly I can prove every single thing that happens in my crazy ass life. But, because of a misunderstanding of a doctor telling me that me staying over a holiday was more important, then saying I went AMA when it really wasnt, and calling me a liar I am screw for pain control!! I can NO LONGER get any type of pain relief. No one will proscribe anything due to a "history" that I now have losted and do not agree with or is it true.
What am I to do in a few months when my breathing is worse and my lungs are worse? I will have to suffer in pain with every breath, every sneeze, cough, and yawn. Because, of something I am being accused of based on my hectic life and circumstances being shitty. How can they deny someone with legitimate reasons to need pain control based on BS, yet those who are doing what I'm being accused of get their meds like clock work.
Irritated and Disappointed,
Sandi
Follow my story by liking my Facebook!
