I'm laying here and wondering where life is taking me. In my last hospitalization I was approached by two doctors of the team. They had a stern conversation with me about how I get sick too much and come to the hospital too much and that they don't know what to do. They can't help me and suggested that I stop coming to the hospital so much. I told them I have no control over how much I get sick and shared how truly frustrating it is for me to basically live my life in the hospital. I asked them point blank if they were telling me not to come to the hospital anymore and they didn't say no but they did say they would be discharging me (though I was still in a lot of pain).

It's a conundrum for me because I truly do feel so lost sometimes because I'm stuck in this never-ending maze of pain and they're telling me to get out but I don't know the way. I need help. I felt so so discouraged while they were talking to me. Imagine, a team of doctors I look up to and am so thankful for has now told me--No. I know that as difficult as it is for me its difficult for them as well. I know that they've been working on solutions, investigating new possibilities for me, and that they desire the best for me but at that moment I felt they aBANDONED me. I feel like they've hit a wall and instead of pushing through as they always have for me they instead decided to lay their sword down and move on.

What Am I Supposed to do with that? Where do I go from here? How do I move forward without the guidance I so desperately need? I do not know.
                                                                     

It's been about a month or so now since being hospitalized and every single day that I've been out has been a battle. These past two weeks my pain has increased exponentially. Almost everyday I have the thought of if I go to the hospital today will they take me? Will they let me stay? Then I lay back down because I know that if they did take me it would only be to send me back home the next day and I don't want to go through that. It would only make things worse for me because I'd be so frustrated that I may get even worse and have to deal with it at home by myself and its already unbearable.

I've been in so much pain that my whole body has been shaking. At first I thought my laptop was overheating and shaking as a result (it does that) but it was off, it's--->>it's me! I've been taking my pain meds, drinking a whole lot of liquids and trying to stay positive but its really hard. Anyone that know's me knows that I will try and do anything I can if it's possible it may help my pain. I do acupuncture, try to get massages every couple months, try new drugs, see a pain psychiatrist (ie. teaches you to hypnotize yourself, gives you strategies on blocking the pain etc.), behavioral therapist (ie. gives me techniques to distract me from my pain, meditation, distraction exercises etc.), whatever I can possibly do to minimize the amount of pain I go through I will definitely try--with reason. But there's only so much that I can do. It only makes things worse that the team of doctors I so desperately respect are so frustrated with my case that they've now transferred that frustration onto me. They've begun doubting me all of a sudden, and growing impatient with me, they're tired of me. All of a sudden they question if I'm truly in that much pain.
                                                                               
was now becoming worse than I was used to. I remember seeing my doctor and asking what's changing in me? All he could say was its different for each person. Some get better with age while others get worse. The degree of fatigue and pain that was different would come up periodically but overall I would get sick just as I usually did. But it did get worse as the years came by. By the time I graduated it was like a dam had bROKE and a new version of my illness had arrived. But I could still work, live life, hang with friends, go out! Fast forward to now and I can barely make it to my doctors appointments. I keep replaying the progression of this disease and I'm dumbfounded. Is there anyone else out there like me? Am I alone in this? I can't be the only one affected in such a way as this!

I really have to leave it to GOD! My strength is not my own. People tell me all the time how strong I am and what an inspiration I am but while I'm silently thinking: I'm not strong! I'm strong because I have to be. I'm sTRONG because God is my strength. This blog is for all sickle cell sufferers out there! You're not alone in this fight. We have good days and we have bad days but we pUSH fORWARD! I hope those of you learning about this disease through reading stories like mine are getting a good idea of how difficult our lives are and how pAINFUL not just the pain is but the process of living with this disease. I hope my story gives you better insight.

Writing this blog helps me and I pray it helps you too.




*Please pray for me if you can. I need all the help I can get. Know that I'm always praying for all the sickle cell sufferers out there!