I need to start by saying sorry. Sorry to my readers, supporters, and friends that I have been away for so long. Life… that is all I can say. I hope you are all well and kicking ass, and taking names!!!
Today on a day that sadness as found me, I have thought of loss. When one losses someone, it is customary to attempt to up lift them and tell them things that may support those actions. Often times it is something along the lines of “it will get easier”, “Time heals” or even Something like, “it’s going to be okay”. Well the more and more I have thought about it over the years, the more and more I realize how untrue this is. Although yes, you do not cry daily or even every moment. No you do not sulk at every turn, but that does not mean it gets easier with time or even that you are healed as if miraculously back to who you were before the loss.
I do not want to take away from the people attempting to provide comfort, because they are coming from a good place. I just found it enlightening and liberating to truly think this through. Let’s be honest here, there is some level of pressure to heal and get back on the horse after loss. To get back to your daily life and all that goes with it. No matter the level off loss. It could be the loss of a loved one, the loss of a relationship, the loss of self or someone you thought you were. No matter the loss there is a pressure to heal and everyone around you looks to you to heal according to their perception. I thought to myself, how can you be the same after a loss? How can you be expected to be the same, feel the same, act the same after? You can’t, at least you shouldn’t. So on today’s journey I found this… and I will leave it right here.
Those of you dealing with loss… you’ve got this and it is okay to grieve.
Still Undefeated Me
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.
With so much love,
“Being Happy doesn’t always make us grateful, but being grateful will always make us happy”
It was the day before Thanksgiving 2 years ago, when I first felt you. It was a day of first’s and a day that will be with me until my last breath. I am grateful everyday, but today I most grateful for that day. The day I felt you.
The day before Thanksgiving two years ago, was the day I felt my son kick for the first time. I was sitting at the counter watching my mom cook when suddenly I felt my stomach drop. It was a feeling that wouldn’t go away, so I finally told my mom I was going to go lay down and relax. She asked me what was wrong so I attempted to explain it to her and she laughed, turning to me and said “It’s the baby kicking you!”. I stood there shocked, because it was a moment I had dreamt of for what felt like an eternity. She swiftly came over and put her hands on my belly and all I could do was cry. I can recount everything in that moment. It was just after 3pm, the breeze was blowing through our house (Florida Living in the Winter), the light was coming in the front door at just the right angle that the sunbeams hit the counter and floor just right. Everything in that moment was okay. See, because after nearly 10 years of being told I could not conceive naturally, my son Enzo was my miracle. I never thought I would feel what I felt that very day. It is a feeling I now know would make me laugh and keep me up late but that I would cherish. All day today I have been thinking about that beautiful afternoon two years ago.
My words do not live up to the moment but I wanted to share. I wanted to share the moment I am grateful for today, my happy place. Again, I am grateful every day. I pray to my higher power, always giving thanks but some day’s you just are grateful far beyond reason or explanation. Today is one of those days.
I hope I was able to bring a smile to your day.
I know Hair loss is a characteristic of Lupus BUT I truly do not know how I have hair on my head! The clumps are getting worse and my bald spot is back.
I am in search for new remedies, any suggestions? What do you guys do?
Maybe bald is the way to go!
Another night spent awake. If I was honest with myself, I would say it’s been going on for weeks. Waking up in the middle of the night/wee hours of the morning. I sleep maybe an hour or two straight and then wake. It has become utterly frustrating . I’d like to pinpoint why this round insomnia is happening, but I seem to be coming up short. Some nights it’s pain related, other nights my thoughts get the best of me. Then there are those nights where there is nothing… no thoughts, no excessive pain… nothing at all. I just lye here, awake.
Most wouldn’t understand. I’ve tried everything from bedtime routines and baths before bed to medicines and teas. My Sour Sop works the best, but it’s still not full proof.
So I am here, hoping my fellow insomniacs are doing well!
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!
Undefeated Brittle Asthmatic Me!
Me: “I am Exhausted”
Them: “Get some sleep. Rest. Oh just take a nap.”
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.
So to positive thoughts and lungs that work!
Hope you are all having a great night!!!
Undefeated Still Breathing Me!
As I sit and review my week, I am astounded by it all. So much has happened this week both personally and in the world. I do not care to open up a can of worms, so I will start and end with this… We, as people are all in this together. I am unsure where or when, but somewhere along the way we have lost sight of that. This weekend I sat and looked at the world around me and was saddened by the anger, hostility, and all around carelessness out there. Walking by people in need, not stopping to acknowledge a greeting. Look up from your phones people, stop and look around you. Say hello to your fellow man.
Is it really so hard to be nice?
When did we as a society lose grip with the world around us? When did we lose compassion for our fellow man and neighbor?
Never the less it was a fresh reminder to myself that, WE… We the people are all on this beautiful planet together, why not make it great? I hope I succeed in instilling this in my son, each and every day!
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!!!!