CF, Drugs, and Rock n Roll!

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

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True Love

Laying next to the most amazing man, listening to him breathe, and looking so peaceful, I can't help but reminisce to the passion I was once able to show my husband. The hunger for his love that ran through my body is still there, but the actions are nearly impossible.

For years I couldn't stop myself acting like teenagers half of the time as soon as he'd walk into the room. Now, I feel like a 97 year old woman with a broken hip. The rush is there, the desire is there, the heat has always been there. The only thing not there, is me! I can't even walk to my dresser any longer let alone try to have relations with my husband.

I find it interesting and very depressing how quickly things can change. What once was a head over hills get a room type of passion is only possible for one of us. Sadly, it is no longer me. What we have is a beautiful love for one anothers soul, the person we have become, and our love of life more so than our bodies.

☆Trust me I know that the love and the bond we have for each other is stronger than anything in the world. I cherish our relationship and our love more than I think he even knows. In reality this situation bothers me more than it bothers him.

As I get older and this disease takes a stronger  hold over my body, I find myself longing for those days of being healthy. Seeing him laying in bed beside me cuddled up with all three animals makes my heart skip and tears fall from my face. I can close my eyes and remember his arms pulling me tight and we would make love until the sun came up. Feeling his strong arms around my waist and seeing the look in his eyes just takes me away to another place and time. A time where I could breathe and nothing could stand in my way when it came to anything, not just the topic at hand.

My diagnosis was bound to eventually take over every aspect of my life. I just thought I had a little more time. Now, it has finally taking my capability for a love life away. From what was at it's highest peak down to nothing at all. I knew this would happen eventually as each year everything gets harder and harder to accomplish. I was only hoping that it wouldn't happen at 28.

I was hoping to have a few more years left before I would be where I am today. Sadly, CF is finally controlling the spark that started years ago for the man that I fall deeper and deeper in love with everyday. The man who can turn me on with only his amazing smile.

☆The worst part is that he is getting the short end of the stick and it KILLS me! I feel like half a woman. Like I can no longer please or take care of my man and it hurts so much. CF has taken a lot from me. The ability to work, drive a car, go to school, make it to events, concerts, just about everything and now this.

All of the passion that once ran through my body for this man like lightening striking down on me has been taken away so quickly. All because of the air I breathe or should I say the air I can no longer breathe? The love and the desire I once had before is still there and stronger than ever. I just do not have what I need to act on these feelings and it is frustrating and depressing more than anything.

How can this be? How can it take away my ability to physically love my husband? We would lay in our bed at all hours of day, legs intertwined, bare skin on skin with a hunger for one another. There was nothing that could stop me from touching, kissing, or holding the man of my dreams close to my body. That is no longer the case and has sadly been left on the back burner. Thanks to Cystic Fibrosis. Each day it eats at me a little more and there is nothing I can do! Nothing I can say. Just nothing!

Now, don't get me wrong we still love one another more with each day! The passion for one another is still there especially for him. I am just no longer able to act on those urges as I would love to. I used to have so much energy and planned so many romantic nights just to make our love life perfect and amazing. Now, I am lucky to kiss him more than twice a day.

The fact that my feet barely hit the floor anymore, my hair is never brushed and I am always a mess. I know that I have a medical smell, I never wear make up and am in the same pj's for days at a time. My body is rarely bathed, scared and ugly, and now I am down to 99lbs and my weight just keeps dropping. What do I have to offer this incredible man?

I am nothing as what I once was. I am not the beauty he met and fell in love with. The model I was long ago has faded into the depths of my memory and staying in the past. I am so ashamed of how I look and even sickened for who I see in the mirror each day. I hide in the memories of the way I used to look and ignore mirrors as much as possible.

☆Ours is a love that burns inside our hearts that will never fade away. I just wish it didn't have to be this way.

I have begun to blame myself and even starting to hate this part of who I am. The medications, treatments, and hospital stays make me weep in bed every night. I can feel his breath upon my skin and my body begins to shake. My heart starts to race and in my mind I am that young, healthy, energetic, sexy woman I was when he first fell in love me. I want so badly to roll around in the sheets with him, laughing and running around the house in nothing but his tshirt. Just for him to catch me, lift me up, with his hands on my body and my lips on his skin!

☆I can't even imagine what that feeling is like any more.

This is a pain that no one knows, no one but me. It hurts worse than any surgery, tattoo,  or infection I've ever had. How do I explain it all to him? How do I explain it to myself at all when all I see in myself is a sad shell of the woman I used to be.

Instead of being caught up and tangled within each other, I am wrapped up in oxygen cords, caught up with medications every 4hours, and can hardly make a move on my own. My body so frail and weak, I have a coughing fit with every breath I take, and my life has become so meek. I was once a beautiful woman with passion that ran so deeply and only for him!!

This disease is so ugly it is so cruel and it doesn't care about your plans or who you are. It doesn't take mercy on your love life, your personal life, or your goals. I never thought I would be in this boat and feel this way at 28.

To understand what it going on would be impossible unless you are in this situation. All I know to do is smile at this amazing man who has devoted himself to me. Pray that he doesn't resent who I have become, in turn making him the man he is today. It makes my skin crawl at the fact that he is now my caregiver more so than my husband and lover. I sometimes feel as if he thinks of me as a burden. As he is the one who has to be both the man and the woman within our house hold. Taking care of the animals, myself, the cooking, cleaning, laundry, working double shifts to pay bills, grocery shopping. He does it all without a complaint and still loves me. He truly is amazing and I don't deserve such an amazing man.

☆I sometimes worry it will be too much for him and he will leave. That is my biggest fear at the moment! Not death, not sickness, not surgery, or lack of friends. I can't lose the man that brings me the sun and the moon, but if it was me I can't say for certain that I would have stayed as long as he has. Only true love and devotion would make a man stay with a woman like me. Going through all of this with him makes it easier on me, but I worry so badly he will eventually want someone who can do everything that I can not. Domestically, physically, and intimately.

So thankful for true love and devotion,
   Sandi

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