I hope that this post finds all of you having a fantastic and loving holiday season. I have been thinking what I can do new and I would love to offer one of you the opportunity to share your story or to write a post.
If you’re interested in being a guest writer, please email me a small snippet of your story or why you would like to share to: firstname.lastname@example.org.
The guest writer will be selected this Sunday night!
I can’t wait to hear your stories!!! Please don’t be shy to share. You can stay anonymous if you choose.
The life of a Asthma Sufferer… Sometimes I joke that “I’m allergic to the air”, but in all honesty leaving the house sometimes poses a serious threat to my lungs. Case in point today… Although I was dealing with small allergies they were nothing I couldn’t handle with an over the counter allergy pill. This morning I walked outside and felt as though My lungs were assaulted. I felt as though I was suffocating and since I have been reaping the consequences, for simply walking outside of my house. Most of the year and even more so in the summer months the EPA Website and myself are best friends. I check air quality prior to walking out of the front door.
My doctor recently encouraged me to move back to another climate. He looked at me and said these Asthma attacks will kill you if they continue like this. No one and I mean no one wants to hear that but I without question appreciated his honesty. Sometimes I take for granted that I have made it this far. I rarely allow my illnesses to keep me down for long. Sometimes I forget just how serious my illnesses can be. I fight every day and I think at times I become almost desensitized to the very possiblity of a permanent outcome. Sometimes I forget that my illnesses are not just debilitating but can be deadly…
So today was a good reminder, and I took it easy. Living off of my nebulizers and put myself back on a dose of steroids (Yes this is a routine dose discussed with my medical team that prevents a crisis from happening we start on a pre discussed dose of steroids).
*Not recommended to be done without discussion with your medical team*
I’ll never let it keep me down for long but today and every day is a good reminder of life and the blessings it holds. To my fellow chronic illness suffers that have lung involvement I am with you… May we breathe better sooner rather than later!
If it were only that simple. There is tired and then there is the exhaustion that many of us with a Chronic Illness feel. It is the nausea inducing, body shaking, fever generating, limb weakness type of exhaustion. For me, my exhaustion can sometimes include breathing difficulties and neurological side effects such as dropping things, tripping (body imbalance), and fogginess. It is a concept that is difficult to grasp if one has not experienced it.
Sometimes resting or sleeping do infact help but more often than not it only places a bandaid on the situation. It is like plugging in your cellphone that is at 2% for 10 minutes to get just enough of a charge to make a call. You rest/sleep for 8 hours… and sometimes you have just enough energy to do just one activity. You save up all of your energy for one thing. We are not talking about saving up your energy for one big trip to Disney, no. I am talking about you sleep 8 hours to do something like clean the bathrooms or cook dinner. This is of course if you can get to sleep, as many of us are experiencing side effects from medications or in such pain we can not get comfortable.
I wish I was joking. I wish that everything I was saying was a harsh dramatized dream, but it is not.The last time I was experiencing this level of exhaustion I was being newly diagnosed. I have to admit that I have been very lucky over the years as I have been able to kind of gage when I was exerting myself and I would plan appropriately. I worked full-time, went to school full-time, and maintained some level of friendships. Now that I think about it, I am not sure how I did it… but I did. Now a days I can’t seem to make it until 3pm without needing to nap for just a moment. When I was working in an office, many of times I would take my lunch break and nap in my car.
I have been looking up some different shakes and teas to help with my symptoms. Think I will make one in the morning and see if it helps even a little. I’ll share the process! Stay strong my fellow spoonies. I am with you… Have a good night!
After nearly two weeks, I am still confined to my nebulizer. Outside of being admitted to the hospital there is nothing more that the doctors or I could do to get me breathing 100%. These are moments… The silent moments… that the ehaustion and slight defeat kick in. I will be the warrior I am and will push through but in moments like right now, in the darkness of my room, sitting on the floor connected to my nebulizer, there is that moment of exhaustion that sets in. A moment that makes you say “come on, really”. I have attempted everything to keep myself out of the hospital, because let’s face it… The hospital is the last damn place I want to be.
My body is angry… Laying in bed (Yes I realize it is 6:55PM EST) and I feel like I just got my ass handed to me. You know Lupus is part of the culprit when you barely get in the door from driving home and can barely manage to get in the shower. Hell if I could actually bathe myself. So I SAT. I waited a couple of minutes and mustered enough energy to wash and get out. Now I am trying to muster the energy to get dressed. This of course all while still not executing breathing appropriately from my last asthma attack and the shakes.
You may wonder how I have the energy to write. Well, my talk to text is my best friend. Plus, I want any of my fellow chronic illness warriors out there that may be getting your ass handed to you today… I’m there with you and WE’VE got this!!!!
Being able to walk pain-free is a blessing. Being able to walk without showing the pain is a skill.
The pain can be excruciating, mood altering, and downright unbearable. Day’s like today, I get it. I get how someone is pushed to the brink. I get how someone normally so sane and logical can be pushed far beyond their limits and be anything but. Day’s like today, there are only minutes. I count the day in minutes. I made it through another 30 minutes without going home or without giving up. At the end of the day I am proud of myself, but to get there is no easy feat.
Life has been an interesting ride as of late. Diagnosed with steroid induced diabetes a couple of weeks back, I have been fending off sugar drops and rises like the most seasoned tennis player. Add to this insomnia and pure exhaustion, I have a pretty good idea of what induced this onslaught of body pain. None of that makes it any easier. Opening my eyes this morning the pain I felt, felt as though I was in a car accident. The exhaustion I felt, felt as though I had taken some form of sedative. Neither of which actually happened. Like us chronic illness warriors always seem to do, I pulled myself together as much as humanly possible and off to work.
One that does not live with a chronic illness may not understand what it takes. To walk to the copier, to type an email, to even sit for more than a few moments. It is all excruciating. Better yet, to wear clothing that is not loose is a mission. Day’s like today, I am proud of my chronic illness sisters and brothers on a different level. Day’s like today take more skill and determination than normal days. Unfortunately day’s like today often outweigh the “normal”.
So my fellow sisters and brothers on days like today and every day I am with you. I stand strong for you. Above all I wish we were all together to hug and hold one another. Because let’s be honest on days like today what I really need is a hug.
I am pretty sure at this rate I will reach some form of hysteria by midweek… I found myself laughing at the following pictures a little harder than I should have.
I wonder if I would find them funny once I get a decent amount of sleep? Furthermore I am here to inform you my friends that penguins DO in fact have knees! Just in case you were all curious. Lol
Another night, another tortuous night of rapid fire thoughts that seem to never end. I believe I have not only reviewed my life as a whole, but have caught up on my research and revised my life plan ten times over. I’ve also recreated my bucket list at least five times. Who is with me out there? What have you done? Have you designed the next breakthrough in modern science? I swear I am much smarter between the hours of 1-3am than I am during “normal” working hours.
On a not so funny note, due to what seems to be my new power hours my pain level and swelling are on the rise. My brain and body are betraying themselves yet again. I am so sorry to those of my fellow brothers and sisters that deal with this on a much grander scale then I am. May the beauty of sleep find us all… And soon!
Never let the things you want, make you forget the things you have.
For a dreamer and a natural born planner the struggle is real. A never ending battle to focus on the here and now. How often do we stake claim on a goal for the foreseeable future and blow full steam ahead, but forget to “stop and smell the roses”? Lately, I have been so fixated on the future that I have not stopped to look at what is right in front of me, and above all be grateful for it. I found myself transfixed yesterday in a moment that was both invigorating and self-actualizing. It was the moment I realized, time waits for no one. This is not a new lesson but one that from time to time I fail to keep in the forefront of my mind. As I stood in a moment with my son, standing in the grass of our front lawn I realized just how much I focus on things for my future that I want to give or do. Although there is nothing wrong with wanting to create what I believe to be a better and brighter future, I do see a problem missing out on moments in the here and now.
So with that I took off twirling and throwing my little man. Running around on the lawn and eventually throwing us both in the grass, worn out and gasping for breath (who would think I am only 30). In one simple moment, that smiling face brought me back to the here and now. The here and now to be grateful for that small moment. The moment’s we as people with chronic illness only dream about when we are in a hospital bed or bedridden from our diseases. In that moment, my son reminded me to live. Not in any way shape or form am I saying that I am fixed from this thought process, but that moment, a moment shared between mother and son transcends through every aspect of my life. Stay focused Christina… Take a moment and taste your coffee, smile at the passing company, and above all remember that life is here and now, be grateful. Tomorrow is uncertain for all but especially those of us fighting battles. Hell, today is uncertain. What I know is as I went to sleep staring at my son’s face, I thanked him for the lesson. He will never know the true depth of what he teaches me regularly.