What does it mean to be Weak?

Wow, where have I been?

I've been sick of course. People ask me all the time how I am. It's so funny because it never fails that I'm sick. I feel like I never get a break to at least get myself together and regroup so that I can take on the enormity that comes with suffering with this disease.

I don't want to be that person that always bring people down by what I'm going through. I want to be able to have a normal conversation about the current movies that are out and how horrible or great it was but alas no. I have nothing to share that is different or able to contribute. When was the last time that I was even around a group of people that weren't hospital staff??? Hmmmm...

It really is tempting to want to get sad and down about my life and the apparent hold that I'm in but I refuse to be taken down by this disease. Instead, I've taken my cues from God and decided to stand up under my adversities. It is not an easy task at all but I stop my self after a needed cry and think of Jesus and how much he suffered because of his love for people, me and his father. I push each and every day not because I'm strong, no not at all, but instead because there is a reason for all of this whether or not i know the exact reason I know that God believes in me enough to put all this on my plate. So who am I to disappoint my Father who loves me so unconditionally? The only reason I get through this is because I feel His love and support without that I'd be broken.

But I also had to come to the realization that my suffering, my pain, constant prodding, poking, drugs are allot and because it is all so much it has to incite a series of emotions that are to not be ignored. I used to think that if I cried and felt sad about what I was going through that it meant that I was weak and a sad person who just felt sorry for herself. The truth is if you don't allow yourself to feel those emotions then you can't truly grow as a person and you won't be able to continue to take on the challenges of the disease! You become Stuck.

Allowing yourself to feel sad, allowing yourself to feel frustrated is the key to really taking on the disease. Without going through the process I remember feeling stuck and overwhelmed. Now the key is not giving into those emotions or allowing them to consume you. It's not an exact science and I do fail sometimes and my emotions do get the best of me sometimes but that's when I realized that my faith, my God calls me to give over to him all of my worries and burdens and that he'll take care of me. It's not my responsibility to take on everything and to be superwoman, be strong all the time. It's unrealistic. The strength comes in knowing your weaknesses and knowing that trying to smile and be happy all the time when I'm going through so much is an act and will only lead to more sadness.

I appreciate now how hard it is dealing with this disease and I respect the things that all this suffering is teaching me. It is extremely hard dealing with this disease but I do rejoice in the fact that I'm still here.

C o c k t a i l ~ M e d i c a t i o n s

As you can imagine I take allot of medication to alleviate pain and maintain my health. To really understand how much drugs I take look at the pictures I've provided. These meds have there individual function while as a whole provide treatment for me and trying to control my disease.

It's allot taking down all these pills. Many times I feel as though I'm eating a meal when I take these pills. I take all but 5 of the pills in the above pic twice a day. This specific combo is my night time cocktail. Here is a list of the medications I take on a daily basis:

Hydroxyurea 1500mg (cancer medication used with sickle cell patients)--once a day,

Folic Acid 1mg--once a day,

Opana ER 300mg--2x a day equals 600mg a day for pain,

Opana IR 60-80mg--every 3hrs as needed for pain,

Lyrica 75mg--3x a day for nerve pain,

Ibuprofen 600-800mg--every 4-6hrs as needed for pain/inflammation,

Trazadone 100mg--once a day sleeping pill,

Hydromorphone 8mg tabs (8 pills)--every 4hrs as needed for pain,

Prochlorperazine 5mg--as needed for nausea,

Cyclobenzapr 10mg--3x a day for muscle pain,

Nicosan 350mg--once a day for sickle cell maintenance,

Morphine 400mg*--3x a day for pain

* I no longer take Morphine it has been replaced by Opana

Today was a ShoCkeR!

I woke up this morning Encouraged but I'm sitting here discouraged. Waking up this morning I had an idea of how this day was going to be.

Today was my appointment with Dr. Filicko (my bone marrow Dr.). The goal of the appointment was to finally set a date to begin the transplant, sign some papers, draw some bloods, and leave with a direction, a plan for my health. Instead, as I sit there in the doctors office with my mother waiting as I think with glee on how soon my life will change. Dr. Filicko enters and encourages me that ALL the tests I've had to do for the transplant have been surprisingly Great! She then shares with me that the goal was to get me started on December 10th and be done just days before Christmas. Wow, I'm so excited till I stop and realize she used the word WAS in her statement.

There's a problem she says. Your insurance which we thought would cover your transplant is not covered. She goes into an in depth explanation about what the problem is and why I can't make the December 10th date. As she's talking all I can do is sit there as tears begin to roll down my face. What is happening is the thought running through my mind and does this mean the transplant is Off? No, my doctor says. She shares that the transplant will cost anywhere from $500,000-$1.0 million and that if we were to still go through with it I would be accosted by the billing department. I told the doctor that I am willing to do whatever it takes to do this transplant even if it takes every single penny I have to show good intention to the powers that be. The doctor doesn't want me to have to live that way but I counter with: look at the way I'm living now, I have no life, I'm in pain every single day, I can't sleep b/c of how much pain I go through, I can barely walk at times. I really can't live this way forever.

Hearing about this setback brought about so much emotion. All I could think about was living in pain for a longer period of time. My heart broke especially because I came into the appointment elated and eager to hear the date set for the procedure and instead I got a bomb--blowing the date back to the unknown.

Dr. Filicko suggested I try to find a Benefactor (someone who would donate/fund my transplant). Now, she said whether I do that by trying to contact a celebrity who would be willing to donate (by contacting an association) like Sickle Cell Disease Association of America or SCDAA or family/friend who has the means to make such a donation. So if there's anyone out there thatis reading this an would love to help me or know's someone who would be willing and able to help me please contact me. You can find my contact information at: http://www.wandefightsforsicklecellanemia.com/, http://www.facebook.com/group.php?gid=134212590888, or comment below with the information~> I would be eternally grateful.

So as of this moment the transplant has been placed on hold. I believe with ever fiber of my being that God has put me through all of this and has taken me to Philadelphia specifically to finally bring me some peace in my health by providing me with the opportunity to do this bone marrow transplant. Though this is a stumbling block. I truly believe it is a momentary one and that I will do this procedure and be Cured! Its just a matter of when and how!

I ask for each and every one of your prayers to help me get through this very difficult time of my life. Thank you from the bottom of my heart!!

In Your Prayers

Written on Wednesday, March 17, 2010 at 7:40am



As many of you all know from reading my blogs, I have been very very sick. My health doesn't seem to be getting any better. In fact, in many ways I have gotten worse. Now, I couldn't sleep tonight and can't believe that I am still up but I am writing to ask you all to keep me in your prayers and to specifically pray for my health. My health has gotten to the point where at my doctors appointment yesterday he talked to me about doing a bone marrow transplant. Now, for those of you who do not know or are unaware of what a bone marrow transplant entails~it is a very serious surgery. I would have to find a bone marrow donor willing to undergo surgery to give me some of their bone marrow (prayerfully one of my brother's or parents). I'd also have to pray that my body does not reject the bone marrow along with other side effects.

I have exhausted every option. So all that I am left with is to trust God and pray for the best. Please pray for me and for whatever transpires with my medical team that they do their best in consulting with me and in any decisions they make. And if I do decide to do this, please pray that I come out of it healthier than I am now.


Thank You So Much!


Love,
~Day

Will Sleep Come?

Once again I'm up. I'm up through the night while everybody else is in that place of serenity and peace--I'm in pain and agony.

I long for the days of peace. The day I get to lay my head down and give my body a gift it hasn't received in months, maybe even years and that gift is REST! I long to wake up to the sound of an alarm clock and not the sounds of my own agony and despair which haunt me each and every morning. I long to be free from the paralyzing bolts that shoot through my legs keeping me prisoner to this bed, this room, this house.

These four walls are all I know anymore. I barely remembered what it felt like to breathe fresh air till I pushed myself and broke free from this prison of mine called Life. YES, air! Yes, civilization! Yes, a world not too far from my own yet light years away in the same instance.

These past weeks have been a dream. Breaking free from those four walls have freed something in me that was lost for a while. Yet I must be careful because this outside world is not my true reality. No, that room and all it encompasses seems to be calling out for me to return.

My spirit within me SCREAMS a resounding, No! No, I don't want to take up those shackles once again but I must. It's not a decision that I make but one my body makes for me and I must Listen! I must walk back into that house, that room. Back into that bed. Surrounded again by those four walls and I must take it. I must take what this life has called me daily to swallow and do it all over again.

Here I am back where I started.

You know it's lonely being the only one up throughout the night. No-one to talk to. No-one to laugh with. No-one to understand the depravity that comes with being born with this disease.

Exchange

Some months ago I got admitted into the hospital--just missing my birthday only because I sucked up all the pain in my refusal to once again be in the hospital on my birthday (July 1st). I ended up being hospitalized July 4th to the end of August. While in the hospital the doctors once again found it difficult to control my pain. Now when I say control my pain I mean using pain medications ranging from very high doses of narcotics to anesthetic drugs to overpower my pain.

Since my pain was still uncontrolled the doctors suggested that I do an exchange transfusion. An exchange transfusion drains all the blood out of my body and replaces it with all new donor blood unlike a regular transfusion that just pumps donor blood into blood that is already in your body. The picture to your side is of the machine used for the exchange transfusion. These are the in-and-outs of what a sickle cell patient goes through and it's hard. It's unbelievably hard! In order to do the exchange transfusion it takes allot more than what one goe through to do a regular transfusion which just requires an I.V. access. I first have to go to the surgical ward and have the surgical nurses prep me. Once they are done I met with the surgeon who was extremely nice and distracting because who wouldn't be nervous having someone cut into the side of your neck. The surgeon numbed the area of my right neck and inserted the tubed needed to proceed with the exchange transfusion. It feels like allot of pressure as he inerts the tube into my artery. Surprisingly he was done in minutes and without me knowing. I was still anxious about him starting that I didn't realize that he had already finished!

Once done I returned to my hospital room. A nurse is assigned to me for the procedure and begins preparing the machine and the units of blood required for the transfusion. I received 7 bags of blood which are hooked up individually. The goal of the transfusion. I received 7 bags of blood which are hooked up individually. The goal of the transfusion is to have blood that does not sickle.

Unfortunately for me the transfusion did not work and my pain continued. Actually, I ended up getting an infection from this procedure due to the fact that the tube was not taken out of my artery promptly. The tube finally was taken out but I had to received daily I.V. antibiotics for a month.

Though this was a trying time for me it was one of a few options I had to help me with my pain and so I truly had no other choice but to do the transfusion and I honestly would do it again. Sickle cell sufferers are left with little options with them being: pain management, fluids (I.V., oral), and transfusions. So to escape from my pain I would do all three of those daily if it would keep me from enduring the things that I go through!


Share

Wednesday, November 3, 2010

Laying Here!

Here I am up once again in the middle of the night unable to fall asleep. The hours just roll by like the wind. Wasn't it just 8pm 10 minutes ago?!? No, it's almost 1:30am going on 5:30am which is when I finally fell asleep last night!

This is what happens when the pain just won't go away. I'm left the only one up in the middle of the night trying to figure out ways to make the time go by quicker. Will it be watching t.v., listening to music, reading, or roaming the worldwide web?!? Whatever I decide depending on the night never really makes the time go by as quickly as I'd like because there's that constant nagging reminder of why I'm up in the first place and that's The Pain!

If you can relate to my midnight dilemma, know that you're not alone!


Share

Subscribe to: Posts (Atom)