It's a wrap, Sickle Cell Awareness Month comes to an end! I am so proud of those who donated to Sickle Cell, reposted my blogs and joined me in the conversation of Sickle Cell—this is all part of awareness.
Please, let my experience be the conversation you have for years to come
as you make others aware of Sickle Cell!
In conclusion to my Sickle Cell journey, I will wrap up with
my last, horrific hospitalization. For
many of you, you read the, “Won’t he do it” blog from 2015 when I spoke on the
experience of the hospitalization, but if you did not read it, here is the link to get caught up, look you get 2 blogs in 1!
In short, in 2014 I started to have breathing issues and it
all started after I participated in the Sickle Cell walk (ironically). It felt as though a gorilla was holding an
elephant and they’re sitting on my chest, and the feeling of not being able to properly breathe makes you feel
disoriented and scared at the same time, and by now you know me, I refused to go to the hospital. However, within 2014 - 2015 I went through a series of sleep tests, oxygen masks, pulmonary tests and everything was simply attributed to sickle cell, but nothing specific.
Well, in November 2015 I was hospitalized for what they thought was pneumonia. I was in the hospital for 6 days the week of Thanksgiving! Talk about feeling lonely! Granted I had my WONDERFUL friends, frat and sorors who visited me EVERY DAY during the day and even on the Thanksgiving holiday, but it was at night when the loneliness seeped into my mind and it was literally me and God in that hospital room after visiting hours.
I'm not saying God instructed me to move home to Washington, but he certainly showed me the reality of being "sickly" without a relative or significant other. I was released from the hospital the Saturday after Thanksgiving only to end up back there two weeks before Christmas for another 3 day stay. This time they found that it wasn't pneumonia, but instead pulmonary embolism...blood clots in my lungs. HOLY SHIT! See, there was a gorilla and an elephant in my little lungs!
Two hospital stays within a month, both times equally nerve wrecking. Seemingly I bounced back, but again at night when the world stopped, my head was on the pillow and I lay awake starring out my bedroom window, I couldn't help but constantly feel alone. Could this be depression? Could it be anxiety? Simple loneliness? I mean, professionally I was growing, socially I was at my peak, but the fear of being sick and alone in my apartment was to overwhelming. Dying alone was suffocating me at night...literally.
So, April 2016 I made an emotional decision to move back to Washington. While my friends in Maryland questioned my haste decision, they supported me and helped with that transition. My family in Washington naturally was excited to have me back, but I don't think they really understood what I was leaving in Maryland and how taxing it was on me mentally, physically, financially and emotionally for me to actually make the move. Here I was coming back to the state where there lacked sickle cell support and my family was clueless about my disease, yet I wanted to be closer to them. In my mind, MY FAMILY should be responsible for me, not my frat/sorors, yet now looking back, it was my friends/frat/sorors who took care of me the most...and I left them. Yeah, that part. I'm back to laying awake at night starring this time up at my ceiling (no more fly ass downtown apartment), tears streaming down, screaming in my head WHAT THE HELL DID YOU DO, LISA?
I miss this view and this apartment in Baltimore. WHY DID I LEAVE IT?
So, how am I doing today? Today I'm kool and the gang. I have a great doctor, Dr. Adesina who is Nigerian and her main focus is Sickle Cell! I've had minor issues here and there and had to have an emergency blood transfusion April 2018, but I was not admitted (that was another horrific experience, but I won't go into it).
Shout out to all you blood donors out there THANK YOU!
Ironically, I did not tell my family I was in the ER until I was released. Perhaps it was habit of doing the sick thing by myself, or it was this feeling of again not wanting to be a burden, yet being with family was the reason I moved home. Funny, if you read my "Dating over 40" blog, Distant Derrick was the one who convinced me to go to the ER and was on the phone with me my entire ride to the ER and my check in process.
Recently, I came across the Stem Cell transplant for Sickle Cell patients at NIH (thank you, Tranise). This type of transplant would not necessarily cure me, but reduce my need for transfusions or any pulmonary issues in the future. While I do prequalify for it, both my doctor here in Seattle and my NIH nurses are discussing if it is really suitable for me since I do not have as many crisis as the average sickle cell patient. Naturally, I will keep you all posted on if I become a candidate and I head to NIH for the transplant.
What I want you all to take away from my experience:
1. While Sickle Cell patients may look fine, most times they're silently suffering.
2. Hospitals generally think we're drug seeking because we "appear" to be fine. WE'RE IN PAIN
3. More GENETIC TESTING! Know your family health history
4. If you cannot donate dollars, DONATE BLOOD!
5. EMOTIONAL SUPPORT is appreciated more than you know.
6. EDUCATE & ADVOCATE!
7. I'm not the only one with Sickle Cell, I'm the only one who shared her story. Reach out to those silent sufferers.
Until next time, keep me in thought while you're out there spreading the awareness of Sickle Cell Disease!
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