Since my last post/update, I wish I could say I'm feeling a lot better, or even just a little better for that matter.
Like I mentioned in my last post, I was started on an antibiotic in hopes that it would help whatever seemed to be the problem (because I still haven't figured it out yet.) I am allergic to six antibiotics already and the one I was prescribed was the one that seemed to do the most out of the ones I have left. Unfortunately, I developed an allergic reaction to it and put that on my allergy list as well. So obviously, the antibiotic didn't help my fevers/headaches and still struggling a little with that. I get some testing done on Wednesday so I'll update about what those say, next time.
However, my fevers/headaches seem to be the least of my worries now. I think it's been about a week (sorry I never know my days anymore) since I started noticing more issues with my lungs. I have a spirometer at home. which is the same concept as the PFTs I get done at the hospital, so I can keep track of my percentages everyday. So I can tell how well/poorly I am doing by my guidelines that I have set in place!
My lung function has been significantly lower for a while now lately. Not getting higher but not getting lower. have Albuterol and Atrovent to use when needed. When it comes to Atrovent, I can only take 3 maximum every six hours. I never take 3 within six hours at home, I take two and if I'm still struggling I let the hospital do the last one. Well last night I was watching a movie when my wheezing intensified and I was quickly getting shorter of breath. I took multiple Albuterols, and 2 Atrovents and improved, just barely avoiding an ER trip and admission. I called my pulmonologist this morning to see what the next step would be even though I already knew... steroids. We talked about what I wanted to do and if I wanted the steroids or not, but I told him I after that previous night, I wouldn't last tonight at home if I didn't start them right away. My first dose was tonight (Monday) and once again, multiple albuterols and atrovents were taken. Not being able to take my last Atrovent at home, I have until 2:00am at the very earliest to take some more. Fingers crossed, hoping and praying I last until then.
On a different note, I wanted to write about something multiple people have asked me about. Cleveland Clinic Pain Rehabilitation Program. I just wanted to clear some things up as some of my opinions may have seem a bit confusing. The program was 2 weeks inpatient and 1 week outpatient. It consists of very structured physical therapy, occupational therapy, mind & body skills, yoga, exercise groups, etc.. I loved the therapists, psychologists, nurses, doctors, other patients, everyone. They were such a huge part of everything and couldn't do it without them!
When it comes to how much the program helped me, how much of a "normal life" that I returned to, and how much I'm doing despite the pain, is where my answer gets a little tricky. Yes, I think it's an amazing program and I am ecstatic for everyone who got such a major benefit out of this program. I think it is a little more challenging on my part, due to not having just one illness, or having one reason why I have such severe pain. I have such a combination of illnesses that a lot of the reason I can't get back to doing everything I want to do is not always necessarily from pain, it's from the illness perspective. However, if you took out all my illnesses and left me with just chronic pain, I would say yes, the program is very effective. It gives you such a strict schedule, gives you strengthening, endurance, and you start taking baby steps to getting back to the things you love to do but weren't able to, do to the pain. I am very happy for all of my friends (who I went through this journey with) and how, for the most part, they are doing extremely well. I am keeping up with everything I learned from this program, except for times when my body is physically not capable of doing it. So yes, I loved Cleveland, and I am making baby steps, may not be as fast as others, maybe not as fast as I would hope, but I'm trying and even if I take one step forward and two steps back, I am trying, and that's all I can hope for.
One day, I will get there, one day.
Like I mentioned in my last post, I was started on an antibiotic in hopes that it would help whatever seemed to be the problem (because I still haven't figured it out yet.) I am allergic to six antibiotics already and the one I was prescribed was the one that seemed to do the most out of the ones I have left. Unfortunately, I developed an allergic reaction to it and put that on my allergy list as well. So obviously, the antibiotic didn't help my fevers/headaches and still struggling a little with that. I get some testing done on Wednesday so I'll update about what those say, next time.
However, my fevers/headaches seem to be the least of my worries now. I think it's been about a week (sorry I never know my days anymore) since I started noticing more issues with my lungs. I have a spirometer at home. which is the same concept as the PFTs I get done at the hospital, so I can keep track of my percentages everyday. So I can tell how well/poorly I am doing by my guidelines that I have set in place!
My lung function has been significantly lower for a while now lately. Not getting higher but not getting lower. have Albuterol and Atrovent to use when needed. When it comes to Atrovent, I can only take 3 maximum every six hours. I never take 3 within six hours at home, I take two and if I'm still struggling I let the hospital do the last one. Well last night I was watching a movie when my wheezing intensified and I was quickly getting shorter of breath. I took multiple Albuterols, and 2 Atrovents and improved, just barely avoiding an ER trip and admission. I called my pulmonologist this morning to see what the next step would be even though I already knew... steroids. We talked about what I wanted to do and if I wanted the steroids or not, but I told him I after that previous night, I wouldn't last tonight at home if I didn't start them right away. My first dose was tonight (Monday) and once again, multiple albuterols and atrovents were taken. Not being able to take my last Atrovent at home, I have until 2:00am at the very earliest to take some more. Fingers crossed, hoping and praying I last until then.
On a different note, I wanted to write about something multiple people have asked me about. Cleveland Clinic Pain Rehabilitation Program. I just wanted to clear some things up as some of my opinions may have seem a bit confusing. The program was 2 weeks inpatient and 1 week outpatient. It consists of very structured physical therapy, occupational therapy, mind & body skills, yoga, exercise groups, etc.. I loved the therapists, psychologists, nurses, doctors, other patients, everyone. They were such a huge part of everything and couldn't do it without them!
When it comes to how much the program helped me, how much of a "normal life" that I returned to, and how much I'm doing despite the pain, is where my answer gets a little tricky. Yes, I think it's an amazing program and I am ecstatic for everyone who got such a major benefit out of this program. I think it is a little more challenging on my part, due to not having just one illness, or having one reason why I have such severe pain. I have such a combination of illnesses that a lot of the reason I can't get back to doing everything I want to do is not always necessarily from pain, it's from the illness perspective. However, if you took out all my illnesses and left me with just chronic pain, I would say yes, the program is very effective. It gives you such a strict schedule, gives you strengthening, endurance, and you start taking baby steps to getting back to the things you love to do but weren't able to, do to the pain. I am very happy for all of my friends (who I went through this journey with) and how, for the most part, they are doing extremely well. I am keeping up with everything I learned from this program, except for times when my body is physically not capable of doing it. So yes, I loved Cleveland, and I am making baby steps, may not be as fast as others, maybe not as fast as I would hope, but I'm trying and even if I take one step forward and two steps back, I am trying, and that's all I can hope for.
One day, I will get there, one day.