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!!!

Are you taking care of your emotional health?

This is by far one of the most difficult posts I’ve had to made. I’ve postponed this times and times again, I’ve gone on to write about everything else but now is finally time for me to do it. It’s time for me to be candidly vulnerable.

This Sickle Cell journey has been very challenging and difficult for me but it has found the right person to challenge. I’m obviously not made of steel so I am liable to get hurt and it will obviously hurt but I will not be defeated by it.

Sickle Cell hasn’t only affected me physically; mentally and spiritually I took a beating as well, and I’m still struggling with that.

After my first hip replacement, I had to relearn everything I knew, physically. Before my hip replacements I was strong and independent, I was growing and was happy that I was heading in the direction that I actually wanted to go. Then there was a halt in my life. Everything was discombobulated!!!

In the midst of all of that happening, I started feeling like a failure. I felt like I failed myself, even when I had absolutely no control over what was happening. I then fell into a serious depression.

Depression is real and it’s quite taboo. No one, especially within the Haitian community, engages in conversations about mental health, which made it more difficult for to approach anyone and get the help that I needed.

For years I struggled, and I still have challenging days, but I’m determined to fight this until I can no longer fight.

Going through this is not easy let alone going through it alone.

Life is to be lived, life is to have fun and be happy. There are supposed to be ups and downs but always make sure you take care of your mental health. It’s not always going to be easy, but you will find the strength to do it. I’d rather keep fighting for it than becoming a victim of depression.

Smile, it could be worse!!!

Dare to have fun?

The people who have an idea or rather an understanding of what you’re going through as a SickleCeller also fully comprehend the fact that having some fun, however you’re able to, is something that can do you some good.

It has happened to me, and I’m almost 100% certain that all SickleCellers experienced that issue; where I was out, having fun, partying; hanging out with my friends, then BOOM, the pain snuck up on me.

I avoid hanging out with friends and partying a lot of times because I don’t want to be labeled the “party pooper”; but eventually I realized that I was labeled something else altogether.

“Fun” is in the eye/blood of the party goer. My idea of fun is very different than yours and that’s the way it’s supposed to be. Nonetheless, some seem to think that as “experts” on SCD, they’re the judges on certain things. If a SickleCeller feels fine enough to go out to the club and ends up in the ER the following day, they’re fakers. If a SickleCeller gets released from the hospital and decides to go out (God forbid), more judgment!!!

For SickleCellers, there’s a stigma attached to their every move; it ranges from being a drug seeker to being a faker because you dared to have some fun to avoid from being too stressed and bringing about a flare up/crisis.

Before judging anyone, it would be wise to get to know said person, but coming from a SickleCeller, please know that 1) I need to avoid stress as much as I possibly can 2) I will always put myself in a position where I can avoid aforementioned stress and 3) just ask if you’re interested in understanding, and 4) mind your business!!!

Smile, it could be worse!!!

Hear my cry…

I’m mentally spent. I find myself always counseling others, one way or another I always want to make those around me laugh. I’m not a comedian nor am I a psychologist, but I have a way of making light out of difficult situations, I guess that’s one of my gifts.

Unfortunately, because I’m able to do that and because I make sure that I stay smiling, sometimes in the hopes that people around me laugh and smile because it’s contagious, I was given the title of “the strong woman/the strong one/strongest woman I know”; and I don’t think I can live up to that.

For a long time, and for the most part still, I keep things to myself, I always chuck it up as “not wanting to worry anyone” or “no one will really understand”; and I’m not sure that does me any good.

I do believe that I am able to tap into my strength when I need it, and that my experiences have shaped me up to be able to go through certain situations but sometimes I want to stop everything and scream “hear my cry!!!” I can’t always go through it alone but I’m not too keen on showing my vulnerability, even though it won’t kill me.

I’ve said it before and I’ll say it again, please take the time to check on your strong friends. They might need you right this minute and they don’t know how to ask for your shoulder to lean on.

Smile, it could be worse!!!

And so it happened.

I know it’s hard for people to grasp how SCD works, how a crisis happens. How is it that you were fine in the morning and you’re hospitalized at night.

I’m sure if I wasn’t wearing that shoe I’d ask similar questions, but since it’s my story, it makes sense to me and I expect for others to understand that.

A few days ago I made a post about the current political situation of my beloved Haïti, about lockdown #2 and me being stuck in the house, hoping and praying that a crisis does not sneak up on me with no recourse.

June 1st 2019 marked exactly my 9th month of NO HOSPITALIZATION. It may seem like nothing but it was a BIG victory in my book. Called for a celebration.

On June 9th, the lockdown started. I was determined not to let those issues get the best of me. It was indeed a very stressful week. The following week, with the streets eerily quiet and empty, where even the birds were afraid to tweet, timidly we started to bring back some sort of normal to our lives.

Out of nowhere, while in the shower, this excruciating pain started in my right hip. The typical SickleCeller in me didn’t want to alert anyone. I bore the pain for a while before I started asking around for meds. I wanted to avoid going to the hospital at all costs. Unfortunately, it won that round.

In the back of my head I always knew that having a Sickle Cell crisis while in Haiti meant that I would be was having a “crisis crisis”. On the eve of Sickle Cell World Day, I had to rush out of Haiti, land in Fort Lauderdale and make the hospital my first stop.

And so it happened, on my 9th month free of hospitalizations, the month where I had to decide if I could actually make it in Haiti, this happens. I won’t say that I made a poor decision by staying in Haiti, I will still celebrate my small victory because this is simply a minor setback. SCD won that round but it’s not over. (As I’m typing this, I’m very emotional, vulnerable, fed up, but… hoping and praying that I get out of that funk sooner than later).

Smile, it could be worse !!!