This is My Life!

                                                                               

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.
                                                                               

It's hard because I feel like I'm supposed to prove it to them somehow but How?!? If I could I would. If they could walk a mile in my shoes for a week of what I go through I'd wholeheartedly allow them to experience what I go through on a day-to-day basis. So I'm left with this. This seems to be my dESTINY! 

I remember when the signs started while I was in college. There would be days where I literally couldn't stand up with exhaustion. I'd sit for an hour before I was able to get up and go to my dorm room. My 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!

The ScALE (1-10)

One to Ten is the scale they use in the hospital by doctors and nurses to put a level on how much pain one goes through. ONE being the least amount of pain to TEN being the most amount of pain.

Whenever I get to that point where I'm faced with having to put a number to my pain I tremble a bit because if I give a number which changes like the wind, will I be taken seriously and treated accordingly? It's amazing how pain functions and how wide of a range it covers. So its hard to put all the pain I feel into a box when its above and beyond any constrictions the One to Ten scale provides.

There are many times where I've given my pain a SIX when the nurse/doc/family member will look at me and say "No, you're definitely not at a 6. By looking at you I would at the least give it a 10." Its hard giving my pain a ranking because what I consider an 8 someone else may give it a 10. For instance, I personally have a high tolerance for pain so when I give my pain a number then that's what I'm giving the medical staff to work with and at times it can limit or affect the type of care that I receive.

When I go to the hospital it becomes a kind of a game trying to really capture how much pain I'm going through with the number I decide to give. It's also hard because my pain isn't black and white as the scale might want it to be. For example, my pain has not just been throughout my whole body but in certain sections of my body. So there are times when I go through pain in my legs, stomach and shoulders and I'm asked to rate my pain. Well in this instance I rate all three areas separately and average them out to one number which I then give the nurse.

Imagine if there was no scale and no instrument in which nurses and doctors alike could use to identify a ballpark area the type of pain we sickle cell anemia sufferers endure! It would definitely make things allot harder. Though the scale is not a perfect science it is a tool that helps identify the level of pain I go through. It's the beginning to a conversation or dialog with the medical staff as to what I'm going through and I appreciate that because its the closest thing to them knowing/understanding where I am at for that moment.


Share

The Effects

My name is Wande Soluade and I am a 28yr old female living with Sickle Cell Anemia (Sickle Cell Disease~SCD). There are different types of Sickle Cell but the type I suffer from is SS. SS is the most severe form of the disease.

When I was younger I would get hospitalized every 6wks and I would be in the hospital for the maximum of 2 weeks. I would hide my illness from friends at school because I was afraid of what they would think of me. No one at school other than the nurse and a few teachers knew I had this disease. I always said this disease is not going to dictate who I am, my life, and how I enjoy my life! Finally, in my senior year at H.S. I shared with few friends that I had SS. To me that was the beginning. The beginning of making people aware of what SS is and what SS does! I began to open up.

When I went to college it was extremely hard for me to make it to class, or even do the work assigned to me but somehow I made it! Thank God! It wasn't easy (at times I put too much on my plate) and I had difficulty with my GPA but in the last two years in college I was placed on the Deans list despite my illness! Once I graduated from college, my pain crises also graduated to another level of intense pain.
Last summer I was hospitalized for 3months which included me being in the ICU, celebrating my birthday in the hospital, and missing the whole summer. In the past 3 yrs my hospitalizations go like this: I'm admitted into the hospital and am there for at least 1 1/2--2months. Once discharged then two months later I'm admitted back into the hospital for about 1 1/2-2 months. This has been a constant cycle for about 3yrs now.

As a result of the frequent hospitalizations and severity of pain I had to stop working as a social worker, of which I loved doing. I also had to return my car to the dealer, move out of my apartment and move back in with family. Sickle Cell Anemia has radically affected how I live my life. I've had my gall bladder taken out at age 9 when it's usually taken out in others who don't have SS at a much older adult. I've also had surgery on my left shoulder due to Avascular necrosis.

Avascular necrosis (AVN) is a disease resulting from the temporary or permanent loss of the blood supply to an area of bone. Without blood, the bone decays and the bone collapses. If AVN involves the bones of a joint, it often leads to destruction of the joint. For me it is both my shoulders and my back. Because of my AVN, I have had surgery on my left shoulder. I've yet to have surgery on my right shoulder. The end result though is that I'll need both my shoulders replaced. Imagine that! The doctors suggested I have them replaced because of the affect AVN has had on them but I feel I am too young to have them replaced. I feel that way because the replacement will only last for about 20yrs. If I do have them replaced now it would only last till about my 50's. So I decided to wait till my late 50's to have the surgery done. Waiting till my 50's would have them last to my 80's.

Not long ago I was released out of a 2 month stay in the hospital. During my stay in the hospital my knee grew swollen with fluid in it and I began walking with a cane. Due to the severity of my illness, nurses had to come to my home to aide me. Additionally, I received home health aides to assist me in my daily life.

_________________________

Many ask me what my pain feels like. Depending on where my pain is at times determines what kind of pain I endure. When I have pain in my legs, back, and shoulders it feels like several knives being stabbed into me simultaneously and none stop! When the pain is in my stomach it's a dull/pressure pain that feels like a person trying to push their fist through a balloon without sucess. My shoulder pains also feel like two rusted metal rods grinding against each other. My back pain feels like having lightning rods shoot up my back-paralyzing me in pain! The pain that I go through is called having a CRISES. It's so intense that the description above can't even touch or come close to explaining how deep and hurtful the pain is. In the midst of having these crises I can't breathe properly because of its intensity.

THE REASON I AM BEING SO BLUNT AND OPEN ABOUT HOW SICKLE CELL ANEMIA AFFECTS ME IS TO MAKE PEOPLE AWARE. MOST PEOPLE ARE AWARE OF HOW CANCER AFFECTS A PERSON BUT MOST ARE UNEDUCATED/UNAWARE ABOUT SICKLE CELL ANEMIA AND HOW IT AFFECTS THOSE THAT SUFFER FROM IT. THAT IS WHY I CREATED THIS BLOG.

Share