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,
Good Evening everyone,
I have the most amazing support team, but I want to thank you all for being there for me as well. You’re wonderful and I appreciate you reading and showing me such support and love via emails and comments. So I wanted to share some beauty with all of you.
Here’s to another beautiful sunset! Although shadowed by the hospital, it is beautiful.
Happy Friday night my peeps. Tonight I shall Netflix and chill :). Oh and need I not forget nebulize/infuse.
We all have our things, small things we can’t live without. When I am in the hospital, I need to be able to wash my hair (shhh random I know), I need snacks to balance the sugar drops in the middle of the night from steroids, I need my 10ft charger, but above all I need a good damn cup of coffee!!!! Truly any day I need good coffee, but more so when I am in the hospital or going through treatments.
Unfortunately, there is no good coffee place here in the hospital. So I’m feeling like my friend below! Please send coffee!
🙂 maybe the universe will deliver… or maybe I need to just go AWOL for a moment! Either way, the need is real. Good morning and hope you have a great start to your day!
You know you weren’t feeling well when you’re happy to be in the hospital… okay maybe not happy to be in the hospital, but happy to be receiving treatment.
After struggling for 8 long days with breathing problems, I drove myself to the ER. Having put myself on the regimen of steroids and Nebulizer treatements and only progressively getting worse, I agreed to being admitted. Currently sitting in the dark looking out my windows thanking my higher power for the opportunity to receive treatment.
I can’t tell you guys how many times I’ve dreaded the hospital stays. Dreaded the inevitable and incessant poking, coming in, and vitals. Today I was just grateful that I have the ability to seek the medicines that will inevitably bring me back to center. Yes said medicines will cost me sleep and some anxiety… etc but they will help me breathe! Something truly vital, huh? 🙂
So today, I am grateful for the opportunity to seek medical treatment. Never thought I’d be so happy!
Those out there struggling… stay strong!
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!
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!
Good Morning and Happy 2AM to you!
Hold tight for your regularly scheduled programming of prednisone side effects. Todays feature comes with insomnia inducing, night or early morning sweats, severe heart burn, the shakes, and elevated heart rates.
I am just stopping by to say hello to my other Chronic Illness Warriors out there going through their share.
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!!!!