I’m Happy I Haven’t Been Hospitalized in 2 Years
In September, I celebrate two years since my last serious sickle cell crisis and hospitalization. I’m so happy to be in this position, because I don’t take my health for granted. I know how bad sickle cell can get, so the fact that I’ve stayed healthy for so long feels like nothing short of a miracle.
Many factors contribute to my health, including my frequent red cell exchange transfusions. I started the transfusion program in 2019, and it has worked wonders to reduce my symptoms.
I also must give a lot of credit to my family and friends. I have an amazing support system. I’m so thankful for the people who make my health their priority, whether I like it or not. From constantly checking to see if I’m hydrating and eating a balanced diet, to the ever-present help they offer whenever I’m in pain, I cannot fully express my gratitude.
Going so long without being hospitalized is a great thing. However, to me, it is also a Catch-22.
I love advocating for my fellow sickle cell patients. However, I occasionally wonder if I’m “qualified” enough to speak on behalf of others who may experience greater difficulties when dealing with sickle cell.
My fear of not being sick enough isn’t new. One of my earliest memories is from when I was about 7. Every year, I looked forward to a Christmas party my hospital organized for the kids under their care. However, one year, I was only infrequently hospitalized, so I didn’t receive an invitation to the party. Upset, I asked my mum why. Trying to comfort me, she told me it was because I wasn’t sick enough. I know she hoped I would be grateful not to receive an invitation, but instead, I felt like an outcast, almost wishing I was sicker so I could be included.
Nowadays, I do not wish to be sicker in order to fit in. However, I occasionally feel out of place. At times, I feel like I’m not sick enough to relate to my fellow sickle cell patients, and yet, I’m also not well enough to relate to those without sickle cell.
This isn’t the first time I’ve reached this milestone. This time around, however, I’m not counting down the days the way I used to, at least not as publicly. I’m aware that many people may be happy for me and would want to celebrate with me, but I fear being perceived as boastful.
Irrespective of these thoughts, I’m happy this milestone is approaching, and I pray I’ll be able to celebrate many more years hospital-free.
If you have sickle cell disease, do you ever feel like you don’t fit in? What’s the longest you’ve gone without being hospitalized? Please share your thoughts in the comments below.
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Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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Comments
Collette Goldenheim
Hey, I can relate to your article! I went almost 5 years without being hospitalized!! This is after I had given birth to my son in 2012. In 2017 I was hospitalized due to a brain infarct, I was experiencing the worst headaches and had been on a morfin drip. Apart from undergoing treatment, I have not been hospitalized since late-2018. Though I still have the headaches and crisis, I have medication(opioids) at home and usually, after a while, the pain will go away until a new one submerges. The worst pain is a unique pain. I call it a unique pain if it is a new pain and you; "what is this now?"Though never " sick enough" to be admitted. Like you, I feel I can't relate to my friends who are sicker because of SCD and my friends who don't. I feel like I'm stuck in between. As a mom, I have to be there for my son even when in pain. By doing so I get perceived as not sick. It's a tough balance. Sometimes, I can go a while with no pain and medication that I start doubting that I have SCD, but it is always round the corner waiting to attack just when you have gone long enough.
Titilayo Talabi
Hi friends am so happy to be part of this forum where experiences are shared on daily basis, infact it encourages people who find themselves in this situation, that there's hope.
I will appreciate if some of us who are interested could be connected to our friends who have gotten some relief in regards to this crisis which is persistent in my daughter's lately. I dont wants to loose her ,I love her so much and it's gives me a great concern.Thanks.
Tracey Doing It In Leopard Creely
I went 2 yrs without hospitalization when I moved to and settled in AZ. I was 43 with 2 little girls and right before my divorce. I was content, supported, comfortable in what God was doing in my life. Once the divorce happened I got sick maybe once a year. I would send my children to a friends house so that they could get the same love and support that I was giving them. Then my ex started fighting me on every little thing and that started my going back to the hospital twice or three times year, now I am in a hospital with fluid overload, new port installed but I’m not having a sickle cell crisis because my hemoglobin is 8.7, wonderful.
Adesuwa
My daughter was diagnosed when she was 5 years plus and was admitted that same time. Since then, she have not been admitted again. We only go for the regular check-ups and ensure strict compliance with her medications and intake of water.
She is 14 years old now and have been doing great by the grace of God.
Michele Roberts
I totally understand. i did not know that anyone would have these same thoughts. I have not had a crises since 2007. I was wondering if I grew out of them. I just take it as a miracle. I've had joint replacements and some other ailments, but not crises. My hemoglobin hovers around 10 after taking folic acid daily since 2013.
I will not brag or take any credit for these things. I will just not concentrate on not being sick enough and thank God that I am not!
Mercy
By God's grace and mercy in my life I haven't had any crisis or symptoms of sickness for the past four years. Sometimes I begin to doubt if am sickle cell because I don't take drugs neither....
I begin to feel the pain of those falling into severe episodes of crises and wish they were like me.
It all God.