My Twilight Zone… (opioids induced…)

I have been focusing more and more on the idea of transitioning completely and totally to Medical Cannabis and I am 93% there, but what of the remaining 7%?

Every time I take a trip to Trulieve (my dispensary), I come home not only happier but also more convinced that I am making the right choice by transitioning. Now I see my hematologist monthly and he is not the one who prescribes the cannabis, so I always leave his office with a prescription for Hydromorphone.

So far, the only negative I can honestly say that I have experienced with the medical cannabis is the fact that the products are not covered by insurance, and it gets pricey. That is something I think needs to be changed and I feel like it is part of my calling to start working on that to insure that our baby Warriors can reap the benefits.

I recommend that anyone, especially living in Florida, venturing into the world of medical cannabis, do not limit yourself and most importantly, think about how much it rains in Florida. If money permits, try oils, capsules, ointments and/or anything else that will help and also that you will be able to use if it is pouring rain, especially if you don’t live alone.

I was in pain earlier, around 2:30 a.m., enough to know that I needed to take something for it. My choices were: 1) roll a joint or 2) take an 8mg diluadid (hydromorphone). Of course I opted for choice 1. Great! I got up, rolled my joint and headed outside to take in my medicine. Upon opening the door, I realized it was pouring rain; my AC was running, maybe that is why I did not hear the rain, but I was sure the rain was on the way because of the pain. Well shucks then, now I have to go with option 2.

I realized long ago that when I take my oral diluadid close to or after 12:00 a.m (midnight), I have more difficulty sleeping. What do you mean you ask? Well, let me tell you! I have yet to figure it out, and maybe I will pose the question to the SCD community and to some of the doctor friends I have. When I take my pain pills late in the night or early in the night (or is it the day?), I end up in my twilight zone.

After taking the opioid, since my system is more used to it now, it takes me a good hour before I can get any relief, which sucks big time but I digress. I eventually fall asleep, but it feels as if I am not really asleep. I know I am sleeping, my eyes are closed, but it feels like an out of body experience. On the nights that it is more challenging for me to fall asleep, I put on my headphones and listen to some music and fall asleep eventually (does not work every time unfortunately), but on the nights that I do use the opioids around the time aforementioned, my headphones are in, my “Celine Dion” or my gospel is playing on low, I feel myself falling asleep, so I know I fell asleep for sure; but then, I feel as if I get out of my body and I then am watching myself sleep, if that makes sense. Kinda creepy actually but since it’s me watching me, it’s all good lol. I recall every single detail during my opioid induced twilight nights, and I dislike those with a passion.

If you live in Florida and you are starting your journey towards Medical Cannabis, whether it’s for minor or major use, take into consideration that you might not be able to go outside to enjoy your meds because it is always raining, if you do not smoke inside your house that is.

Now that it is 8:17 a.m., it is still raining, but at least the sun is out. You think I will get super wet if I step out for a quick minute? Lol… Let me try to catch some zzzzz’s before the day starts starts. If you have a solution for this twilight zone I deal with, please share.

Now, smile it could be worse!!!

Don’t you dare take life for granted!!!

I have a lot of sleepless nights, I just deal with them. Usually, after 5 days, I gotta do what I gotta do to make sure I don’t drop. Maybe my body knows this and I’m sure it knows it better than me, after 5 sleepless nights I start feeling numb.

The positive out of that is the fact that I don’t just lay there and waste, I pray, I read, I pray again; then I get on YouTube and it’s then time to wake up I’m not the biggest Netflix fan, but that’s a story for another time.

I started realizing why I didn’t sleep and as I do with everything else when I have the “aha moments”, I pray then I start fixing it. My prayer at that time is usually just asking God to show me how to fix it. I don’t like the method of “removing what is causing the problem”, just because I think it would then be too easy and eventually it would be in vain. (I know I’ll make sense to some people 😊)

During this process, I usually realize that I’ve been taking that particular thing for granted, which in turn means I take a lot out of life for granted and I’m just going around not really accepting my blessings, in a sense… I know I may not make sense but humor me for a second.

I spoke about my lack of sleep. What is the first question in your mind after reading that? The best question should be, the one my grandma asked me when I told her: “well do you sleep during the day?” No ma’am I do not, but I have a superpower, that’s how I’m able to go 5 days with no sleep 😝.

Because of COVID-19, I’m stuck in the house, I can’t work. Because of COVID-19, because I have SCD, the best choice for me is to stay home, away from anything and anyone that could potentially bring me COVID-19. For that reason, I tend to spend a lot of time in my room, in my bed, and because my body is always in that stage, it doesn’t recognize that I rested and so as far as it’s concerned, I already slept (don’t ask me to make it make sense if it doesn’t make sense but I get what I’m trying to say 😂).

I miss waking up at 7:15 a.m. to start getting ready for work. My last job was cool but my boss was a real jerk but I miss working, imagine I took that for granted and did whatever I wanted, disrespected my position, and just was a complete rugrat at work? I can appreciate this here hard time because I valued my position prior to this “hard time”.

Now let me go pray that my body figures things out so that I can get some great sleep but in the meantime, don’t you dare take life for granted you hear?! Eventually it won’t sit well with your soul.

Now smile, because it could be worse!!!

Gotta keep pushing…

I did not realize that it had been so long since I last shared anything with you. I have been in a little funk, as I am sure a lot of us have experienced during these trying times. These times really are trying.

When they started talking about Coronavirus, I did not really take it seriously, and I thank God that my mother was in town, because if it was not for her, I would not have started taking all the precautions that she made me take, because of SCD. I am eternally grateful!

July 13th marked three (3) months since I have been home, stuck, because of the “Rona” and boy did it change me! Because of SCD I am used to staying home, but it was not a situation like this where I am totally forced to stay home to make sure I do not expose myself nor my family to this “virus” and, when you factor SCD in this equation, you literally have a recipe for disaster on your hands. I was focused on work and different other projects that I was working on, and I had tunnel vision.

If you really have been following me, you do know by now that SCD does not have a schedule, it has its own agenda. There’s no way to predict a crisis. You have no way of knowing. And as life would have it, a couple of months ago, I had a major crisis. I mean MAJOR! I have never had a crisis of this magnitude before, and I was scared…

I was stressed out, and since life does not stop because we have a virus, because we are going through personal issues, nor because we are stuck home almost unemployed. It keeps going, minding its business, doing its own thing; it keeps rotating.

We have to figure out how to keep going, how to keep moving, how to push forward because things are not getting better. Coronavirus snuck up on us, the actual people, we are not the most informed and we’re still going to feel stuck because they will never give us all the details as they relate to this virus. What do we do?

Pushing forward is not going to be an easy task, but it is the task at hand. As I always say, “if you have no choice but to be strong, you will find strength within you”; at this juncture, the only choice we have is to push forward, let’s find the ability to do so within us and improve our quality of life, at least that part we have some control over. Let’s keep pushing!!!

Smile, it could be worse…

Oh how I’ve longed for YOU!!!

The beginning of quarantine did not encourage me to do anything productive, positive; nothing!!! I was just existing… At times it scared me because of the familiarity it had with some of the scariest times in my life.

A lot has happened! I’ve been going through a lot, as I suppose every single person on this planet has.

With every situation, I felt like I grew up a lot. People call me Warrior and/or Soldier and it has been quite a challenge for me to accept that title and to wear it with Honor.

If you’ve been reading my blog, you are very aware of the purpose of the blog, but in case you’re never read any previous post I have made, the title of my blog should be the biggest clue. At times I allow myself to be super vulnerable and write candidly and other times, I have the biggest block and I can NOT for the life of me feel inspired, motivated, and to be quite frank, at times, I have found myself not caring enough about promoting awareness.

My title has ambiguity in it. I’ve been working on my relationship with God, the spiritual part of my being. I am starting to crack this person down. I’m seeing a new and improved version of Gathy whom I longed for. I can only seriously relate this to SCD; because of what I have been going through physically, I lost a lot of the essence of who I’m supposed to be; but I was faced with hard reality and made a choice. I have longed for this version of me and the only way I was able to discover her was by longing for and looking for God at a different level.

Writing this post hasn’t been easy because it feels like I should be writing a book on it. I have to edit, delete and contain everything I need to say to make it fit a blog post. I believe ”the best is yet to come”. Best of Gathy by way of Best of God!!!

Smile, it could be worse!!!

SCD and Depression…

This is not going to be easy to write, I already know that, but I don’t get defeated and so it’s gonna get written.

I touch on mental care here and there, and I tend to thread lightly but within the SCD community, it’s imperative that we address it.

I was at the SCD clinic a few weeks ago (because of COVID-19, they only accept a handful of people daily, helping us with distancing while still trying to take care of us, considering the ER is out of the question), and one of the ladies told the nurse that she has been depressed and scared, especially with this crazy virus spreading the way it is.

That young lady is not particularly my friend, but as a fellow SickleCeller, I felt I had to check on her the following day, and I did.

It was important for me to check on her because I went through depression, I know what that feels like, even if everyone experiences it differently but the thought that this young lady was in that dark hole made me feel uneasy. I don’t have have the skill set to counsel anyone going through anything mentally, but as a SickleCeller, a human being, an intelligent individual, God asked me to contact her and just have a conversation with her.

Years ago after my hips surgeries, my dance with depression started. My take on depression is this, you look well physically (because you don’t want anyone to suspect anything), so you keep up with the charade (hair done, nails done, etc.), you keep a smile on your face (again so that no one suspects a thing); but you’re in a dark hole. You have these crazy thoughts. You have no positive energy/attitude/outlook on life.

Getting out of that funk is not easy. They recommend a therapist and that is great. I think the care package for SickleCellers should include mental health care. We have a plethora of doctors to see; some are monthly appointments and adding a psychologist/counselor/therapist to the roster is something we all can benefit from.

In all honesty nonetheless, personally, I think that the person going through depression has to do a vast majority of the work themselves. Your mental health should be at the forefront of everything. You need to take it into consideration, work on it, push through and not only see the light at the end of the tunnel, but do what all is possible to get out of that tunnel.

SCD is not a joke. Mental illness is not a joke. Any “normal” person dealing with mental health issues/stress faces a real struggle. When these two get mixed together, it is something that is out of this world, so you can’t do it alone but you have to want to take care of it.

My personal experience is coming up next in another post, but in the meantime, please take care of your mental health. We’re in this together SCD community, and anyone else who wants to join the party!

Smile, it could be worse!!!

Let’s talk about it !

I have written about mental health and its importance but I have never felt ready or vulnerable enough to share my personal experience.

Today (1/31/2020) marks 12 years since I had my first hip replacement so it’s a good time to actually write and publish this. Today is actually April 25th, 2020 and still yet, I’m still editing and deleting this post because of how fragile it is and how vulnerable I have to be to finish writing this and posting it.

Today I spent almost 4 hours on the phone with my godmother and it was what I needed at that time (even if I hate talking on the phone).

A while ago there was this post going around that read “check on your strong friends”. I thought about that and looked at it on very different angles; but at the end of the day, you need to check on your strong friends.

Within the “sickle cell ” community, and in turn the “black” community (sickle cell anemia is no longer just a black people disease, I know that very well so please don’t come for my neck), talking about mental health is stigmatized. There is shame attached to it and the worse is the idea that if you seek professional help, you’re “crazy”.

You should know by now that I’m working on my goal of becoming bionic woman, and that I have a big sense of humor. After my hip replacement surgeries, I made the discovery. I started a dance with depression. I wanted to avoid talking about it like the plague, and for a long time I did. I also realized that I was not becoming a better dancer, I had yet to put on any shows. I had to face it, I had to talk about it, I had to decide to deal with it.

Over the years I had horrible bouts of depression, I had to talk myself off the edge, I was afraid of my thoughts, and I had to plaster a smile on my face.

Your strong friends are strong, but when the light is off, when the house is totally quiet, check on them.

Gathy, we’re gonna get through this!

Smile, it could be worse!

COVID-19 (coronavirus)

I’ve been MIA and I figured now is as good a time as any to come back and be present.

The world is going through a crazy period. The scariest part about this is the fact that, at least that’s what I’ve observed, no one really knows nor understands what is really going on; what exactly is this virus and how should it be handled?! If that’s not scary then I really don’t know what is…

It’s a struggle. What do I do? Should I stay or should I go? Do I go to work or do I stay home? If I stay home, because I’m being responsible and taking into consideration that I’m a SickleCeller, will I lose my job? Will I still be able to pay my bills?

Regular humans are having this same conversation in every other household these days, so therefore, as someone who is not considered “regular” (in that context), what conversation you think I’m having?

I always end my posts with “smile, it could be worse!” But today I want to end with something, considering that we are living through something quite different currently.

I know things are not easy easy on us these days. We don’t understand what’s really happening. They’re not telling us much, because they don’t really understand what’s happening. Being on yet another lockdown adds unto the trauma but, what does panicking bring? For me, it’s a sure path into stress and hospitalization. I’m choosing and strongly advising everyone to not panic until we know what it is we’re panicking about.

I say all while having in mind that it could be easier said than done but, I really encourage everyone to try. Until we know more, let’s try not to panic and stress and get sick and let’s smile, because it definitely could be worse.

Reminiscing…

A year and two days ago, I was writing about the side effects of SCD and how much I was worried about starting my new job. Here I am a year and two days later, in my bed, unable to sleep, and enduring and pushing through some side effects of SCD.

I’ve talked about “pain-somnia” before, and just like before, how it pushed me to write the past, it is also my motivation for this particular post as well.

I was finally able to get out of the house and go to work today, but as life would have it, I had to do so while in pain. I was home for days, on a forced house arrest. It started getting to me in various ways, and as mentioned previously I had to walk and talk myself off the edge. After being stuck home for almost 19 days, the thought of getting out of the house , even though it is still very unstable and unsafe out there, got me overly excited (kinda sad when you think about it, but that’s the sad reality!).

My excitement got the best of me. It then started pouring, needless to say, my first day back at work was not heading in the right direction, but I made it!!!

The pain started while I was sleeping, I stayed in bed with my heating pad trying to not think about it. Upon waking up, I realized I was limping a bit and my hips were hurting more than they usually do when I wake up. My first thought was that the rain was coming so I ran to my meds.

I finally made it to work (super late). Few hours later, the pain started knocking at my door. I was furious, because I was finally out and here I was, on the brink of having to head back home. I was determined to push though and stay at work. And with that I missed my “work-niversary”, but I was not confined to my four walls, and these days that’s a win in Haiti.

While I lay there, unable to sleep, in pain, reminiscent of my first year back in Haiti and at work, my smile doesn’t last long because I’m faced also with thinking about the sad reality that I’m currently living in Haiti. I’m glad I pushed myself to make it to work today despite the way I was feeling because I’m not even sure if I’m going to be able to get out of the house in the morning.

Smile, it could be worse!!!

Surviving yet another lockdown in Haiti.

I don’t particularly like to use the word “surviving”, but it seems that in Haiti all I’ve been doing this year is surviving.

This is lockdown #3 for me and I have to say this is not a fun part of being in Haiti. I feel like I’ve been served a prison sentence for absolutely nothing. The 3rd lockdown, this year alone, has made itself everyone’s daily topic of conversation among other things.

As a SickleCeller you become a double Warrior when you live in Haiti. If you lived in the States and were used to a certain way of life and you come back to Haiti; as a SickleCeller, you’re a triple Warrior. I definitely shouldn’t forget to note that all Haitians are capeless heros, just for being able to live through and endure these past 18 days.

One thing that worries me a bit is the fact that there’s no hope in sight, but I stay praying and hoping for something better; for my part, I wish I could live and work here in peace, so that my health keeps improving and showing off in this tropical climate of my beautiful Haiti which is just going through some downs at the moment.

It gets pretty scary, and I’ve had to walk myself off the edge a couple of times. I’ve been asked by colleagues and friends why am I still here, but I’ve also discussed having to start over if I decide to leave Haiti right now. What does one do?

I’m surviving in Haiti, but I’m still on the direction, on the path of staying out of the hospital. I have no real and concrete answers, I simply know that Haiti’s tropical climate is somehow agreeing with me.

Smile, it could be worse!!!

Am I defined by SCD?

Sickle Cell Anemia is no small feat (achievement that requires great courage, skill or strength) hence the reason we are called Warriors.

Dealing with SCD is a daily struggle and staying true to the word Warrior. From morning to night, from sunrise to sunset, from 0 (zero) to 10 (ten), it’s always something, never a dull moment (not always the moment you wish it could be, but definitely not a dull moment).

While I cannot compact my life story in this post, and because I want to leave the major details for my book, I am going to be brief about this part.

I have a lot going on. I love to stay busy (helps me focus less on SCD); between work, my blog, school, family and different projects ; I probably will need a clone soon. Nonetheless, I have to thread lightly because of SCD.

Depending on what I’m busy with at the moment, I have to proceed with care, for lack of a better word. I have to tiptoe around the situation. I have to make sure I don’t ruin everyone’s day, I have to try avoiding stress to the best of my ability, for fear of not ending up in the ER.

At some point, I become “the talk of the town”. My character starts being questioned; on one hand some worry, show concerns and want to know how I’m feeling while others question the authenticity of this illness on another hand. Whichever way the wind blows, I end up focusing and talking about SCD.

I give my all to what is at hand at the moment but unfortunately everything leads to SCD and it bothers me. Am I defined by SCD? Do I have to be defined by SCD?

Smile, it could be worse!!!