PainFree!!!

I’m never really pain free but considering where I come from, being hospitalized 11 out of 12 months for the past 2 years, couple of times per month, having a level 2 pain for the past 2 months calls for a celebration.

Haïti makes me feel different, better even if I dare. I have not been at a level 2 pain in ages and it makes me feel like I can do a backflip and I’m super excited!

I thought to write this because it’s been pouring rain, and as mentioned in previous posts, the rain is my #1 enemy; but here I am just “chilling”, for lack of a better word. I’m not completely pain free but compared to what I would be living if it was a rainy day in Florida, I consider myself being pain free right now.

There’s always the fear in the back of my head, the worry that I may need to be hospitalized, or might just have a serious crisis, and be in hot water then because my country doesn’t provide proper healthcare for its people, but all this does is fuel my fire. I’m sure you’ve heard the saying “be the change you want to see”, I’m going to be doing just that, however long it takes me, I’m determined to provide healthcare to my fellow Warriors here in Haiti; I’m going to be the change.

I also find that with me not being in as much pain, my mind is clearer and I make better decisions. I have a better attitude towards how I deal with things/people/situations; and I’m 5000% sure it’s because I don’t have to use this medical heroin anymore, which I’m super grateful for!!! Now if only I could be InsomniaFree, will that be too much to ask?

Celebrate the small victories, be grateful for the small wins, which in all reality aren’t really that small. A pain crisis is a destructive thing a Warrior’s body has to endure, and at the rate I was having mines, I’m blessed and grateful to have had those 2 months where I can not only recover but also enjoy my person.

Smile, it could be worse!!!

Alone with my thoughts…

Someone once told me that I shouldn’t wait for people/things to make me happy, instead, I should wake up in the morning and decide that I’m going to be happy, enjoy my day and not let anything or anyone ruin it. All that makes sense if you live in your own world (and I mean this literally), because you can’t control others; so I thought.

Then I started realizing that this wise person was right. It took me some time to realize it but what’s important is that I did realize it. Once it all started to make sense to me, I was able to link that “formula” with my health and I started feeling better.

I woke up extra early today because something was bothering me, so much so that I had a constant headache. I kept telling myself that things really shouldn’t have such an impact on me, but I couldn’t figure out how to get over it. I started thinking about that particular person then I decided to meditate on that instead of letting the other issue take over. Then it clicked.

It’s my life, my experience, my story. I hold the pen that writes the pages of my book. I decide what goes on the book and what stays out. I have a “big ole” eraser at the end of my own for a reason. I always wants to make sure that each chapter ends on a positive note (happiness if you must).

By now I’ve put on my thinking cap and focused on the triggers, whether it be people/things or simply pain related, all things you can’t control, you are still the author of what happens next. How you decide to deal with things, allow things to occupy your brain space, or whatever it may be, your attitude determines how your day is gonna go.

As a SickleCeller, I deal with insomnia on a daily basis, I have a good night sleep 2 nights out of 7, and I function fine at this point (I think back to when I was 9 and couldn’t sleep, I would stay up and watch the moon, insomnia has been by my side for years 😆, what a great friend!!! ) because I use that time to reflect, meditate, converse with God, and by the time I have to get ready for work; I have had time to turn the negatives into positive. Now if I only I could turn the pain into something that came with a great physical feeling (still working on it 😆).

The world will always keep turning, life will go on whether or not you have to take time for yourself, time to heal; so you have to decide if you want to stay down/feel sorry for yourself and miss out or, process what is going on, take the best out of it, end your story, chapter by chapter, on a positive note and keep up with the world allowing yourself to live your best life, even when things/people/situations/diseases try to get the best out of you.

Smile, it could be worse!!!

Relationships…

No relationship is easy. They should be all very unique, they should all reflect us, we should be able to recognize some of our traits in our relationships, after all, we are friends (and our relatives should also be our friends to maintain a relationship) because we have plenty in common (friends and family alike).

I can only speak on my relationships from this point on. I have struggled in my relationships with my siblings, and I find myself sometimes not wanting to share my struggle with them because I do not want to worry them for the most part. As Sickle Cellers, sometimes we tend to hide what we are going through because we think the reaction we are going to receive is one of pity; and if it does come across as such, 90% of the time it is done in advertently.

Someone mentioned to me that my posts paint the image of a single woman, that I sound like I am a single person going through this journey alone, I have never thought about it that way but I have since given it plenty thought. I have thought about it long and hard, so much that it has actually taken me a couple of weeks just to write this post. Two weeks later, I do not feel that I am any closer to having an answer that makes sense but I came up with this.

My experience is one of a single woman, even when I have someone in my life. Even with the support of friends and family, it will always be the experience of a single woman. If I wake up in the middle of the night, and he rushes me to the hospital and stays in the ER with me even when he has to head to work in a few hours, which I love him for, I will always sound like a single woman. We used to argue because I would not let him in because I withheld what I was going through at times; I had to learn to talk about it and talk about stuff that I was not comfortable sharing. All this makes me appreciate him more than he would ever know, but (by now you should know how this sentence will end), I will always sound like a single woman.

When it comes to family, especially since I am the only one who was hand-picked by God to be gifted with Sickle Cell Disease, it tends to be quite challenging to help your siblings, parents, grandparents, understand your ordeal. At times I find it is easier to just say I am fine, I am OK, to keep my smile plastered and push through. I am sure they would drop what they’re doing to tend to my needs during any hospital stay, but I always feel like I am an encumbrance even though I am not.

Being in the ER, getting my port accessed, getting those crazy narcotics injected in my body, if and when the physicians feel like it, being pumped full of IV fluids, dealing with nurses who feel they can disrespect you by insinuating that you are a drug seeker, going through a terrible crisis and just trying to take it day by day so that your body doesn’t shut down on you; even when he is holding my hand in my hospital room, I experience it all by myself, because I can try to explain what I am enduring until I am blue in the face, he will never understand it, so I will always sound like a single woman when I speak about my journey.

I say all this to say that relationships are important and your friends and family give some sense to this life that you’re living, even though at times, as a SickleCeller, you feel like only another SickleCeller, only a fellow Warrior can understand what you are going through, do your part in the relationship, open up and share what you’re feeling. We must break the habit of internalizing our pain and our emotions. I fully understand that unless someone is in your shoes, they cannot speak on your experience, but sharing what you are going through with the people who love and care about you can only be beneficial to you. Relationships aren’t easy and I don’t think they’re meant to be, but if you do your part in the relationship you will find that they are not that hard to navigate through.

Smile, it could be worse !!!

Attitude is everything!!!

We are all faced with issues in life. We all are going to go through obstacles in life, the only thing that will matter at the end of the day is your attitude towards said issues and obstacles.

I’m not saying that you will lose someone and you’re supposed to be all smiles, nor am I saying that you’re supposed to just stand there and watch someone throw a brick at your car window. What I’m saying is deeper than that.

So I’ve decided to take a leap and move back to Haiti, because whenever I think about growing up there, I don’t ever recall being sick, or having a crisis where I had to be hospitalized. My heart always smiles when I’m in Haïti and I always feel better. There is the healthcare issue in Haiti, so normally the people who love me don’t always think it’s a good idea for me to reside in Haiti, and I totally understand where they’re coming from.

Being in Haiti, after dealing with SCD over the past ten (10) years, I always have this voice in the back of my head that keeps reminding me that if I ever have a crisis in Haiti, I will be having a crisis in Haïti. That’s where Attitude comes into play. I’ve tried this before but I wasn’t where I am now mentally. It took a while but I’m finally able to change my attitude towards what comes my way.

You can not let people walk all over without all the drama, the ratchedness. You can defend yourself, your family, your property without violence. You can live in a country without healthcare with SCD. It’s not going to be easy, but it’s not impossible; it can be done.

Attitude is everything!!!

Smile, it could be worse…

Side effects of Sickle Cell…

I start a new job today and I’m supposed to be happy, a little nervous, all the normal emotions that come with that particular occasion.

For me however, I’m stressed beyond anything I can think of. I barely slept last night and I’m having jitters this morning at the office. I’m not stressed because I’m worried the job will be too hard or I’m not going to grasp the concept of my job, I’m stressing because I’m afraid.

I’m afraid that Sickle Cell is going to act up, I’m afraid I’m going to start feeling pain, a bunch of stuff are running through my mind right now and it’s unfair to me. I’m trying to get off that energy but it’s quite challenging.

My Warriors know what I’m talking about, but for those who don’t know, this particular situation should want to encourage you to keep spreading awareness, keep pushing for Sickle Cell to be taken seriously, to help Sickle Cell go viral; because, I could easily make myself sick and stop being considered as the ideal candidate for this position.

We have to talk about this. We have to spread awareness. We have to make this happen. But more importantly, we must know that no matter how Sickle Cell acts up, we can still be the best version of ourselves and make our mark in this world, as long as we leave everything in God’s hands…

Smile, it could be worse!!!