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 !!!

Yet another “lockdown”…

Here we are again. Exactly 4 months after the first lockdown, I’m stuck at home again for yet another “lockdown”.

I traveled to Florida for treatment last month and for the first time in the past 9 months, I found myself asking myself “why did you really move back to Haiti?” Of course I don’t have a valid reason. I have no real answer.

I have had 9 months of NO hospitalization and no one will really understand what that means to me. No one will understand how I feel about that; but moving/living in Haiti comes with a big cost!

Living in Haiti is hard enough when you are “healthy”, (everyone in Haiti is sick, no one knows why or how they’ve ended up that sick, but it’s stigmatized so no one is talking about their health or lack thereof), imagine life as a SickleCeller.

I’m stuck at this impasse, should I go? Should I stay? Can I stay? If only screaming could bring me the answer.

I’m praying that this little stint isn’t another full on lockdown, because as much as I’ve been enjoying my hospital free, home manageable, pain crises, I’d have to put on my big girl drawers on and make a serious life changing decision, which I’m not particularly ready for.

Where are Pinky and The Brain when you need them?

Smile, it could (definitely) be worse!!

Surviving SCD in Haiti…

I’ve thought about different ways to approach this. After brainstorming, I have decided that I want it to be like a series, the details of which I have yet to totally figure out.

Nonetheless, I want to have more frequent talks about SCD, however uncomfortable it gets.

Some people think that because a SickleCeller is out partying or is fine one day and sick the next, that SickleCeller is faking. I think I can speak on behalf of SickleCellers when I say that the last thing we would want to fake is a pain crisis. It’s not particularly glamorous.

I have been doing great in Haiti, in comparison to what life was like for me back in Florida. Anyone with a partially functioning brain can see that I’m much better, health wise, in Haiti. Of course when it comes to the ones, whose brain can actually function at its entire capacity, some tend to ask “Gathy, why did you move back here?”, and there lie most of the answers.

I did not decide to move to Haïti. I was in town for a funeral, impulsively I decided to stay. Sometimes I even ask myself if I made the right choice, then I realize that I’m celebrating 8 months hospital-free, so I stop asking.

Living in Haiti as a SickleCeller also has a lot of negative sides, but for me, challenging those is way easier than fighting a pain crisis at the hospital.

So, how am I surviving SCD in Haiti? Today I’m in pain, and I’ve been in pain for a few weeks, but I’m not in the hospital so that’s a win in my book. Ask me again next week and we’ll see what the answer will be.

Smile, it could be worse!!!

The struggle is REAL!!!

I often hear people say: “talk about what you’re feeling”, but as a SickleCeller my feelings tend to be repetitive and unfortunately, the way society is set up, people are more interested in knowing what toilet paper the Kardashian’s use instead of what SickleCellers are trying to express.

I’ve been nursing a crisis since last Sunday. What makes this particular crisis different, difficult and definitely scary for me is the fact that my pain is in my heart. You read right!!!

Because SCD is a blood disorder, technically my blood is sick, so every single of my organs can be affected, they’re all at risk.

Over the past week my heart has been the one on the receiving end of the struggle. The discomfort I felt along with that pain was like nothing I experienced before; it was new territory for me.

Around Wednesday, things calmed down a bit only to pick back up on Friday while at work. Needless to say, I’m still quite uncomfortable but I’m dealing with it the best way I believe any Warrior would.

The struggle is really REAL!!! While I’m celebrating the fact that I have not seen the inside of a hospital in 6 out of the 7 months I’ve been in Haiti , I’m also living with and I’m forced to live through this struggle. This past experience has to be shared on another blog by itself but it lit a fire in me for which I’m grateful.

I still don’t wish this level of pain on my worst enemy on any given day…

Smile, it could be worse!!!