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Tuesday, October 22, 2019

A Year in the Life of Spondylitis

                                                               A Year In the Life of Spondylitis


As each day passes my Facebook memories remind me that it’s been almost a year since I stopped working. As I typed this I found myself struggling with the word to use in that sentence. “Since I had” “Since I made the choice” “since I was put out” and none of them really felt right. In October of last year my symptoms took a turn for the worse fast and by early November I was no longer working and by December I had applied for Disability. I didn’t want to stop working so it really wasn’t a choice. I didn’t really think I had to stop working because I thought it would go away. I could have pushed through it and stayed longer. Unfortunately my employer wasn’t going to allow that. They put me out of work and because I wasn’t improving and only getting worse they requested I go ahead and file for my work disability. It was then that I realized I probably won’t be going back to work. 

I had been having breathing issues and heart issues since 2017 so it really wasn’t a huge surprise to me that things got worse. I just expected it would improve, I though it is just a flare I will recover and go back to the way I was. The way I was had changed a lot since this all started in 2017. A former hiker, I was no longer able to do that. I was handing off responsibilities to my children at home. They did more cleaning and cooking and helped me more than they should have needed to. I bought a cane, was utilizing a chair to assist with showers and getting help with anything I needed. All of this because I needed to maintain the energy to hold down a job. To provide for my family. 

My health did not improve and I went from a chronic cough that wouldn’t go away and getting short of breath with many activities to not being able to climb stairs or lift more than 10 pounds or walk enough to go grocery shopping. I had to sit for showers, I had to rest before getting dressed after showers. I was out of breath by the time I got dressed. The struggles breathing resulted in my heart rate sky rocketing, oxygen drops and coughing fits that resulted in vomiting, which resulted in peeing and sometimes leaking stool on myself. This was a daily occurrence unless I just stayed inside my home and did little to no activity. That increased my pain. I wasn’t sleeping and more symptoms became aggravated. 

During all of this My Doctors ran numerous test and added tons of medications. We went through several changes and never got it right. I just kept getting sicker. I ended up by April having such severe issues with my heart rhythm that I was admitted to the hospital having nonspecific intraventricular conduction delay disturbances, and several other abnormal heart rhythms along with being very bradycardia and hypotensive. This led to a heart Cath in July. My lung volume and diffusion capacity continued to decline. Monitoring showed issues were present but scans couldn’t visually see a problem. Test results showed there was a problem, but Doctors didn’t have any answers for me. 

Here we are almost a year later and I honestly felt like I was losing all quality of life. I thought I’ll never be able to fully enjoy being active again and who knows how long it will take to find the answers. While I still don't have answers, things are improving. I made a choice to stop all pharmaceuticals and it was the best decision I ever made. My heart rate seems to be more stable. My lung function is no longer declining at the moment. My spasms have nearly stopped. I have not vomited in almost a month. I went to a corn maze and enjoyed myself, while it was exhausting and I got a little short of breath, I didn’t need my cane, and I didn’t have to sit down and I was able to keep up with the kids. I have been sleeping and my pain is even better controlled. 

I have not opted for no treatment, I am using Cannabis now as a replacement to all the pharmaceuticals. I was on 15 prescriptions a day, 39 pills a day if I was lucky that was all. I am only 38 years old. It really started to dawn on me that medication could be a big part of my problem, as it has been in the past on more than one occasion. I really didn’t want to go down that road again. So I decided to speak to my Doctors. They all agreed that maybe the medication was a problem and supported my choice to stop and use cannabis instead. I still see my doctors but I’m taking only 1 prescription medication now and that is for Gerd. Unfortunately I tried to cut that out as well but my stomach is just not in a place to tolerate not having the medication yet. Or I guess I should say I am not willing to be that miserable. 

I don't believe I am cured, and I don't believe that I will never have my symptoms worsen or that I ll never require the use of medication again. I just know right now in this moment I feel better than I have in years. I feel pretty great considering all things. I know that my breathing problems still exist and I know that if I do certain activities that it will get the best of me. I need to be patient with my body. I don't know what the future holds for me but I know that this has brought a whole new desire for me to push awareness of the dangers behind pharmaceuticals and the benefits of using cannabis as a natural treatment option. Stay strong and Kick Some AS 

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