Every little bit counts.

I’m having a hard time getting myself motivated to do alot of the things I want to do. I wouldn’t exactly say it’s just motivation that I am lacking. I didn’t understand what it takes to make a change in one’s life, until the past year. I was involved in a group session with other patients from the pain clinic I have been going to for years. We met twice a month and spent the entire morning together, learning about ways to manage life as a chronic pain patient.  I was open to the idea of a group in the beginning and so I really put in effort. I pushed myself through my never ending anxiety and tried as much as possible to get involved. 

  The topic of discussion on a particular day, was change. But It wasn’t just saying that I have a problem that is affecting my life and I’m going to stop. The entire concept showed me just why I have always had a difficult time changing. First off you need to look hard at what is bothering you and find out what triggers that action. So I have a bad way of dealing with public places and people, but I can’t just say that tomorrow I’m going to make friends. I need to find what it is that gives me the habit of wanting to be alone instead of with other people. In this case, I am most likely protecting myself from rejection or hurt and have gotten very accustomed to being alone. 

  As refreshing as it was to realize that I had been trying to make changes in a way that never would work..I also felt very inadequate in doing anything To change my life, since the root of my problems were almost always very deep and painful. I am not involved in the group anymore. But I find that I am constantly being frustrated with my patterns and behavior. It wasn’t until just recently when I realized that even though I’m not taking all the steps to solve my problems. Even being aware of the issues on a daily basis has given my life little bits of change without my knowledge. 

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Finally I feel normal (only by way of mess) but yeah!

so it’s almost sunrise and in AZ at this time of year it’s close to 5:30am.  But if you have any type of sleeping disorder you won’t find it odd that I’m out and about right now.

    So my nuvigal is what I take for fatigue and what I’ve been diagnosed with as OSA(obstructive sleep apnea) a fairly mild form of sleep apnea.  When I took the over night sleep study, I of course begged for a take home test and was able to get one. I  picked up the equipment in the afternoon on a Tuesday and got a little instructions from the front desk and a pamphlet for doing it at home.  So later that night when I was very close to falling asleep which was maybe 7:30 pm.. And this was late for me, but I was instructed that I needed to keep the device on my body for at least 8 hours. At this point in time my pattern of sleep was to eat my largest meal as late as possible and try to space out my last remaining clonapin so I could crawl into bed before I fell asleep.

   Sounds strange but for the last 3 years I have been very comfortable sleeping outside… And at first I would fall asleep in a camping chair in my backyard.  But when summer came so did allot of my worst things… Cockroaches! I Hate  the little bastards.. And by hate I mean despise and fear more than any other small insect. I really don’t know how I have been living in AZ my whole life since roaches are a seasonal habitat of the dessert.

  But back to the sleep study.. I found it  to have less bugs in the front yard on a metal glider. So I have gone from just a few hours of sleep out side, to the entire night out side, and then back to my bed when I would get extremely sore in my back and neck. Which is a story in itself as to dealing with neck pain.  

    So I had eaten and not taken any clonapin but was still getting very tired.. So I quickly assembled my test outfit with was a strap across my chest that was positioned right under my breasts.  Not very comfortable but it also had the main part of the device attached to it.. The strap was a 2″ tall velcro strap and it has a 4×4 black machine that when I hooked up the link to my chest with a sticker and an oxygen tube in my nose, I turned the machine on and it popped up with my oxygen saturation, my pulse and my heart rate. 

What do you do when pharmacy dictates my life..

I’m sitting in the back of my pharmacy and it’s dark and quiet because it’s Sunday morning and the clinic is closed so I have a quiet spot to sit down and talk to you about the last few days.          I’ve missed quite a bit of posting and I am frustrated with myself for this, I have tried to get the energy to make a post that is helpful and positive because having chronic disease is something that I have found makes it hard to find very much positive in my daily life. So just a lot of anxiety and depression and ups and downs from what I found out later was a serotonin saturation that was caused by my cymbalta and my allergy medications. Living in AZ my whole life I am just now beginning to develop seasonal allergies that increase to the point of congestion and eye irritation and skin itching, nasal congestion and the whole bunch of shit that differs from a normal spring day to a windy day. So I have been trying different types of allergy medicine and I found mucinex to be pretty good at working on the congestion.  So I am going to post a video of the ridiculous mess of symptoms and hopefully I can start to feel a little bit more balanced. Not to mention today is mothers day and I haven’t talked to my son in over a week.  But I will post more about what I have found to get myself through the last week of running out of medication and going to the sphycologist and all the stressful shit that I have been having to deal with.  And I know you have just as much to deal with in your life so please let me know your thoughts on coping with withdrawal from meds or having meds clash and make you feel crazy..  I would love to hear some feedback.  Have a great day and take time to tell your mom how much she means to you… Even if it’s a step mom or if you are not in a great place with your mom.. Or if your mom has passed away, maybe you have a fantastic person who you are close to and look up to in the absence of a mother. Anyways I do hope you can relate or laugh at my ridiculous behavior. Love Sarah 

Is sleeping all night what normal people do?

Hello I am obviously going to let you know a bit about some of my nightly habits, and sleeping for 8 hours is something I really can’t remember… I know I did it as a kid, but for the last 5 years I have not slept all the way through the night.  

             

marbles is with me all the time .

  so I can start by saying that you won’t probably be very interested in what I do when I can’t sleep, because I smoke.. And I have been through many arguments with my Dr’s who want to blame anything that I have trouble with, is because I smoke.  (I know it causes cancer and is terrible and I don’t intend for you to support the habit) The actual beginning of my sleep issue was when I started to fall asleep in a camping recliner in my backyard.. My mom who I have lived with for the last 8 years when my dad passed away from colon cancer and at the same time I was beginning clinical trials. But my mom would yell at me and wake me up, but after a few weeks I started falling asleep in the process of having one more cigarette and not remembering what happened.

   Fast forward to now.. I still fall asleep outside, but I have been able to get into my bed for a good part of the night more frequently. The reason I believe for having a better way of managing my OSA(obstructive sleep apnea) is one I finally was capable of forcing myself to do a sleep study , and second is because of the drug Nuvigal (armadafanil)? Not sure of the exact drug name.

    Beautiful as it sounds to take a pill and sleep all night and wake up not feeling like you were attacked by wild animals all night, and be productive and useful until the end of the day… Yeah I don’t have the delusional expectations for medications like I used to.. I  have great and terrible things to say about Nuvigal, but I am going to post my drug reviews of the meds I’ve ever had and am still taking, in a different category. But if you have taken nuvigal and have any suggestions or questions I would love to hear from you.

      As for now I am going to try and make the best of my day and right now is my prime time for energy and motivation so I hope you are well and I would love to hear any story’s or complaints.. US sickies need to stay together. 

     Sarah ♻️

In remission but what is a life?

     Hello my name is Sarah, and I’m 34 years old. This is the very first entry for my blog so I will sum up a bit about myself.. I was diagnosedd with a very rare type of cancer at the age of 9.  No one knew anything about it except that it had only been found in adult men, and that I was the 5th person in the United States to have been discovered.  Surgery was the only option for me and was  for the next 8 years. But I will cover all the Gorry little details in my future posts, but since my goal in creating this blog is to hopefully find anyone in the entire world of any age, race, or health condition to be able to relate to me and anyone else who shares about the multitude of struggles we go through on a daily basis, and most importantly how we can make our lives as meaningful and happy as our bodies will allow.

      So if you have come here through a search or a post, I  hope that you can try and make contact with someone and hopefully find something that inspires and comforts you.. Because I have been looking for that since I was 9 years old.