Life on standby

I am on standby on life. With everything going on, I am struggling to just hang on. I have had so much life happen that it is overwhelming. Dealing with life while having a chronic illness takes an amazing amount of effort. I takes twice as much work and twice the effort and we bare this with the constant remarks of “Other people have it worse” or “Its not as bad as you think”.

It is as bad as we feel.

So I close this short post with the fact that I have life stuff. I am continuing to fight, both my illness and my problems. I hope I have the energy to keep going.

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Take me home, Country roads.

Music is such a powerful healer. The sounds and vibrations can help break up stress and tension. Feeling the the beat can raise or lower your heart rate. It provides positive feelings and an escape. For someone with chronic illness, this can be such a welcome escape.

When I am going through a fibromyalgia flare or when anxiety starts to pump adrenaline through my body, I have a method of calming down. I use a sensory deprivation where I go to a dark room, put a nice heavy blanket on, hug a plushie, and I listen to music.

My personal favorite is the Lord of the Rings soundtrack (Fellowship of the Ring, Track 17 The Breaking of the Fellowship). I hear the notes and get lost in the music. It gives the soul something to attach on to and it pulls the body with it. By closing off the rest of your senses, with darkness and being alone, you get swept up in the sounds. It is amazingly peaceful.

In difficult times, music has a way of helping us find a way through. I have known quite a few people going through a bad break-up and listening to their couple’s song over and over. I distinctly remember living in a 22-foot pop-up camper with my family (6 people and a dog for 6 months) in a trailer park. The trailer site next to us had a husband and wife who fought like cats and dogs. Being a trailer park, and VERY thin walls, everyone in a 5 mile radius heard everything, much to our regret. The husband who leave each night slamming the door and the wife would play I Will Always Love You by Dolly Parton, sung by Whitney Houston while drinking wine.

Every night.

As a teenager, this was not a fun event each night. However, I realized that this was a coping method and was a way for her to calm down. The next morning they would come out of the trailer, smiles and hugs until the next evening. Now this is a very unhealthy situation and was horrible for them (and all of us around them). It has shown me that music can help in a very difficult situations and lead you through them.

I am currently facing a huge hurdle in my health. I am having my Tramadol removed from my medication. My doctor is no longer allowed to prescribe it to me. He was very chagrin while telling me. He was upset. Due to the “Opioid Crisis” I am found to be no longer fit to take it. After almost 6 years of being on it with little/to no side effects, a much higher quality of life, and one of the backbones of my pain management, I am being told there is no reason to have it. My chronic pain and illness disagrees.

Strenuously.

I have have to agree with it. I am having to go through a new cycle of pain management. I am having to adapt to life with severe pain once again on a daily basis. So in order to do this, I have been bringing out music once again. My new favorite is Country Roads by John Denver. I have listen to the track 20 hours in the last month alone, though not all at once. Most times it is only about ten minutes. And finding ten minutes to allow my body to relax and get a break from feeling is sometimes all I can get.

I will take it.

#hugaplushie my friends.

PS 

I have seen my readers in Germany SKYROCKET! I wanted to call upon all you out there and thank you with all that I have. Hugs and love to you all! I will being doing a special post for you all! PROST! ZUM WOLH!

Pain invades my sleep.

It has been a bad couple of weeks. Pain has been a constant reminder of my condition. An aggravating and hard reminder. One that reminds me that, yes, I am sick. A reminder I wish I could forget.

Waking up in pain makes me never forget. You lay in bed feeling like a major test in school is waiting for you, that you just worked out so hard your body is screaming, and if you even tried to roll out of bed and hit the floor, you would not feel it as your are at your pain level cap. I hurry to get pills in me and have them start working as soon as possible. A baby waits to be taken care of and I am responsible for this 7 month old bundle of joy and energy. I have to get going as soon as she wakes up.

Coffee is my nectar of the gods very morning.

Pain is also available in the evening, free of charge. I hurt in the hours leading up to the time when I can lay down to not sleeping. My body does not relax and is tight from being in pain all day. Insomnia sets in for a few hours. I used to be able to fall asleep in under a minute. I trained myself in college to fall asleep fast as I had 3 noisy roommates. Those days are gone now.

And now pain invades my dreams.

I had a dream last night. Dreams are a rare occurrence. Most nights I can’t fall into REM sleep. This night I was given a very strange view of my life. In this dream, I was hooked to a morphine pump for my pain and told to press the button as often as I needed it. As soon as I felt the pain, I would hit the button. Every 5 minutes I would press it. Over and over again. The pain never left me. It was dulled for about 30 seconds. Then it came back. For what seemed like hours I tried to fight off this pain. It never went away.

I woke to my usual pain and I grew afraid. Was this my life? Was this my fate and destiny to be chained to drugs? This is what drives people to depression. This is what causes anxiety. To be under constant bombardment and never getting a moments peace.

On common theme I see in my fellow pain warriors is when we do get a low pain day, we over-do it. We push ourselves and celebrate. We try so hard to live a normal life, even for a day. To get that day of relief is a blessing. It keeps us sane for when the next comes crashing down. It keeps us going.

I fully understand my need for help. I understand my need for medicine and how it helps me. I know some days, most days I would not be able to get out of bed without this help. This blessing and curse.

And my constant pain reminder that follows me.

#hugapony my friends

Gone baby gone.

I have been so sick I don’t remember the last 2 days. I have been trying to sleep but a fever has kept me in the mid state of sleep/not sleeping. Not my favorite way of enjoying myself.

I did want to share that I have been hired by a subcontractor company for Google as a website reviewer. I passed all the testing and I can’t be more happy.

Thank you all for your thoughts and prayers. I am going to go eat for the first time in forever.

El quick posting.

I had a 9 pain pain day yesterday. For those who don’t know, here is the pain chart.

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11 was when I had kidney stones for 3 days.

Ow.

I am trying to recover today (the aftermath). I spent most of the day on a heating pad, then iced it down. Needless to say I am back to my normal 4-6 that I am every day. Pain, the non welcome friend who never goes home.

#hugapony
#stuffedtherapy

Emotional pain.

I hate myself sometimes. I have no control of my feelings at times. I see things, people, pictures that are supposed to be cute or funny and I don’t feel that.

I feel terrible.

Case in point, the following picture appeared on social media.

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I understand the point. I know it’s supposed to be funny. It’s a comic. But I don’t feel funny.

I feel pain, sorrow, and sadness.

I hate myself for it because I can’t control it. I feel so sad for him. My heart aches. I hate pain and suffering. I feel it from all different sources. I sympathize with people who are in positions of hurt.

I can’t stop the sudden feeling of dread followed by pain, internal pain.

Hug a pony my friends. I am just too sensitive….

Oh day of days.

Crying. I am crying.

I can’t stop.

It is all my fault I feel.

I could have done something different. I could have been better. I should have been better.

I had a doctor’s appointment today to refill my medication because I literally ran out today. My last dose was this morning. My doctors appointment was scheduled and when I got to the office I was held up for paperwork in the main lobby. I was told I did not have to do any paperwork because I don’t have insurance it would be self pay. While waiting to get my paperwork the receptionist were talking and chatting so much that when another person came by they told them that they needed to finish up my paperwork so I could get to my doctors appointment. Because they took so long getting my paperwork to go see the doctor which I was not supposed to be doing anyway I ended up being 15 minutes late to my doctors appointment at which time I was informed that I was too late for my appointment and told to reschedule for next week.

I was in full panic mode.

Ask and then begged explaining that I had run out of my medication and that I needed to see the doctor and I was met with just a plain no from the nurse. I ended up barely talking to the receptionist asking if I could reschedule for later today or at least get a refill for the weekend until my appointment could be set.

I have to tell you that I was in shock the entire time. My body was numb and I just couldn’t believe that it would happen that way. My hands were trembling as I walked downstairs to the lobby and sat down to call my wife.

I had forgotten that I had to pay for parking and I left the only bank card with money on it at the moment at the house. Because I did not see the doctor I did not get my slip to cover for my parking and I did not have any money on me to pay for parking. Frantically I looked through all my pockets and found $0.71 in change I went and checked the parking charge and it was a dollar.

Defeat yet again.

I talk to my wife who was understandably furious at the situation and I tried to remain calm but I’m still in shock.

Somehow I just feel this is my fault I feel that I should have left earlier or done something different or ran to the appointment or hurried up the receptionist or anything. I know part of my problem is self-blame and in this situation I know while there’s only so much I can do I still feel it was my fault.

I am now sitting in my car across the street because of a very, very nice lady at the ticket counter let me go through without paying for parking. Small simple acts of kindness I think are going to save me as they do so many people.

Unfortunately while I’m trying to be very grateful for that wonderful act my body is still in full panic because I don’t know how I’m going to make it through this weekend and next week without my medication. Detox is not fun as a recorded here before and I’m not looking forward to doing that again. I am praying that my doctor cruise a small prescription so that I don’t run out again so I sit here and wait pleading, begging, praying for another miracle.

I’m hugging my pony very very tight right now.

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I now ask for all my dear readers for your prayers and strength. I hate asking for things it’s a pride issue something that I need to get over but I just don’t know how I’m going to be able to make it through without a miracle.

I hope all of you are having a better day than I am.

Hug your ponies for me my friends.

Just a stone’s throw.

I have not had a chance to write here in the past few days due to a medical complication. I managed to survive but it was not an easy ride. On this past Monday I was at work when I felt a slight pain at my side and the need to rush to the restroom. I sprinted (gently) to the room only to have the pain increase. I did my business and left feeling only slightly better. As I walked out of the room I was hit with some of the worse ( at this time) pain I had ever felt in my life.

I have had a kidney stone in the past. It was not a pleasant experience and I did not expect to repeat the performance. My colleges at work were extremely helpful and watched over me for about an hour until I could pull myself up off the floor. I was curled in the fetal position as I whimpered in pain. A completely helpless feeling.

I hate that.

I was driven home and crawled into bed on a heating pad. I was feeling better and could move around. I took it easy the rest of the day. And then the night came.

And also the pain.

I spent most of the night on the floor pleading with God asking for help. My cries of pain and agony woke my dearest wife. She sat helpless to help me as there was nothing she could do as this stone of great pain ripped through my body. When you have a kidney stone, you just try to find a position that relieves the pain some. Anything will help.

Hour upon hour passed until the dawn broke. Still the pain lasted. I sat on a heating pad for most of the day and drank as much water as I could. Pain came and went throughout the day but the evening came brought some relief. I had not seen the stone but I had hoped it passed. I ate some dinner (first real food I had eating besides a few small snacks). I felt well enough to hop on a video game and play with some friends. I had not been playing with them too long when once again I was struck with pain that overwhelmed the body.

Sweat and tears ran down my body. The agony had doubled and now there is no relief in sight. The hardest part is the fact there is no end. It is just constant pain. If it came in waves or if you could get a break (like I did during the daytime) I could have handled it much better. I have a pretty high pain tolerance but this broke me. I could not find relief. As a fever took hold of me, I stepped into the shower to cool my body and to help hydrate myself. Cool water washed over me, cooling me. it brought the pain down some. Some was the best I got.

Hour upon hour of straight agony is too much for anyone. I would not wish this upon my worse enemy. My body could not keep up with the pain. I threw everything I had eaten up in. Nausea washed over me. My stomach twisted with the rest of my body. No medication would stay down. Water that was drank would come up an hour later. I pushed and pushed trying, willing, pleading for the stone to move. Only one thing met me after each try.

More pain. More twisting.

Morning broke as I managed to grab about 20 min of restless sleep. After 12 straight hours of pain you would have hoped I would have passed out. I came to the realization that I would not be able to pass this without help. My wife and I went and dropped my daughters off with a friend. We then rushed to the ER. Agony was still my bedfellow as I was admitted. They gave me some heavy duty narcotics which, unfortunately, did not seem as heavy duty as they made them out to be.

And then the tests and scans came.

More meds and waiting followed.

After about 6 hours of being there, the doctor told me that I had mostly passed the stone and I was in the last stages of the process. She prescribed more meds for pain and to help push things along.

About an hour later I was the parent to a brand new kidney stone. I will never be able to truly put into words how painful and helpless it was. I did manage one picture (with a pony of course) that I will share. I hope you all have had a better time than I have this week. I will now go rest a body that is sore with muscles that should not be sore.

Hug a pony my friends. I now await my hospital bills…..

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Death comes in threes.

I have looked were that phase came from, but there is not a whole lot of information on it. I do know that it is a much truer statement than I care to admit. These past few months have been crazy. I know I have held on as much as I could for my family.

Our pet Guinea pig died this morning. His name was Pascal from the movie Tangled. He was my daughter’s first family pet. My wife got him from a gentleman about 5 years ago who was getting rid of him following a bad break up. It was her pet and she loved him. He was nervous of us at first but soon, when he realized that we all loved him and was caring for him, he was very happy in his new home. He loved fruit and veggies. His favorite was the tomato. He would get one and he would squeal like a pig (go figure). When he was especially happy he would do little hops (or as my girls called it “he is doing his popcorn dance!”).

He was getting old here lately. He never liked being moved (our last move was 3 years ago) and we were not looking to move again. He was at least 2 years old when we got him and we had him for almost 5 years. We knew his time was coming soon.

I am tired of death. The death of the unborn, the death of a family member, and now the death of a family pet have worn me thin. I am having to explain once again about death to my daughters. Parenting has never been easy. This is by far one of the hardest experiences to help them through. I just need a break.

I think it is time to hug a pony.Sad_fluttershy