Leah's Blog

Friday, November 14, 2008

Transplant
Category: Life

I am in the hospital, two days after my transplant and I feel amazing! What a relief! I couldn't even imagine feeling this great so soon! I get to go home tomorrow. My mom's recovery hasn't been as smooth as mine. Please pray for her! She is in a great deal of pain and hasn't eaten since Tuesday morning. It's not fair! Two times she has given me life, yet she has to suffer. I wish I could take her pain away. Besides my mother, everything else has worked out perfect. The girls are going good. They have had 3 different sleepovers to take their little minds off me and I have spoken to them every night. Their spirits have not been broken! Thank you dear Lord! I am relieved. I sent them a card on Wednesday and they got it already! I am sending them another one tomorrow. I leave tomorrow but if mom gets her way she will stay another night cause she is in pain. Johnny and I will probably stay at the Marriott. He has been very supportive to the both of us. He is not just my step father but my father for sure. He wheeled me all over the hospital today without any signs of resistance. His heart and generosity are tremendous. Thank you God for putting him in our lives. You knew we needed him! Thank you! Well it's extremely hard to write a blog with an Ipod, so this is where I depart for now. I will write so much more when I am home and in front of my computer! I love you all! And just know because of everyones support, I didn't shed a single tear! For the first time in my life, I felt complete peace! Amazing!

Saturday, November 08, 2008

The Auction
Current mood: Overwhelmed
Category: Overwhelmed Life

I am lost for words right now. The turnout last night was amazing and much more than I had imagined! I met so many wonderful and caring people. I am honored by the generosity of our community and my family through Christ. I know that my mother and I are in Gods hands. I want everyone to know that I am truly okay! I am very positive and I have great faith. I don't think I would have the ability to get through any of this without God. As a matter of fact, I know that I wouldn't be able to get through it without him and everyone he has put in my life. I can't thank you all enough. I had so much fun and it was so nice to talk to you all. I am sorry if I didn't get the chance to meet you. I tried to make my rounds! I don't even know who to start thanking personally because I am afraid I might accidentally leave someone out, but I will say thank you to the Church of the Rock and all of my friends and family and everyone who donated anything to the auction. Anyone who helped out in anyway! I am blown away by the gratitude you have all expressed. Right now there are so many thoughts going through my head. It is VERY hard to concentrate so I am going to say good night and clear my head so I can pick up where I left off tomorrow! Good night and God Bless!

Monday, November 03, 2008

My Dreams
Current mood: cheerful
Category: Life

Okay...Here I go again! I believe when I started my page, I wrote about my goals. I was in school going for my associates degree. That got postponed when my kidneys failed in February. After I have recovered from my transplant, I intend to finish my classes. But first things first. My main goal is to do something really fun with my daughters. They want so desperately to go to Disney World and I promised them we would when I got better. It has been put off far too long and they have been troopers through everything! Hopefully next summer we will finally be able to do that together. They deserve it. When I am not feeling well, they REALLY behave. I think because they know if I can't take care of them, they will have to go to their fathers! LOL Don't get me wrong, they love their daddy, but they are Momma's girls for sure! They love to get in bed and cuddle with me. That's their favorite thing to do! Then there is my dog situation. I have longed for a dog for so long. I have invested a lot of time and research to decided the dog that would suit me and I've decided that I want a Yorkshire Terrier. That was not an impulsive decision either. For those who know me, you know how I desperately long for my little man once I recover! I've been trying to find a local breeder and one who truly cares about the well being of the dog and the home it is placed in, but no luck yet! I would love one right now, but I have put it off due to my transplant. It would be selfish of me to get a dog if I can't take care of it. And I fully intend to make it my baby! LOL His name is going to be Sebastian. If it's a boy that is! I haven't picked out a girls name yet. Cute right? Anywho. I am going to watch House with my lovely mother. And I will dream about my Sebastian tonight. I can't wait to have doggy play dates!

I’m doing Okay!
Category: Life

Those of you that know me, know that I have been very sick since last Thursday. I had to go to the emergency room Sunday and get medication for my pain. I have not been able to use my hands for anything without sending piercing pain througout my body. Something as simple as brushing my hair, seemed like an obstacle as big as mount everest! I couldn't even open a medication bottle! I woke up Sunday morning in tears because I couldn't get dressed! I wanted to go to the ER Saturday evening but it hurt too much to move so I put it off. Anyway... It was a Lupus Flare. Lucky me! They put me on pain killers, only they did nothing for the pain. I did catch up on my sleep though! LOL So I saw my primary doctor today. We decided to try steroids for the time being. I HATE steroids, but you know I am in pain when I am asking for them! Now here I am, four hours later and I have regained the use of my hands! I felt so helpless the past several days. My family has been very helpful. I have been staying at my mothers so they could take care of me. I couldn't drive myself to dialysis Friday or today. My mother catered to me, with nothing but love! And good o'l Johnny is Awesome! Aren't you Johnny? But I don't want to do it! My mommy will do it for me! LOL That would be an inside joke. Next time you see John, tell him "I don't want tooooo!" He will get it and die laughing. You know laughing burns calories right? Get to it!

I am getting very inpatient for the dinner this Friday. I can't wait to see everyone! And I have a very special guest that evening. His name is Tom. He is 26 and has Lupus just like myself. He had a kidney transplant in 2006. He was diagnosed at 11 and started dialysis at the age of 19! And here I've been in the spotlight for the past month. Where is his recognition? What about his accomplishments? He works 12 hour days on top of everything he has gone through. I find that amazing! I hope he doesn't mind that I am telling his story, but I find him inspiring and I am grateful to have the chance to meet him in person. He told me when I am in recovery and I don't want to talk to anyone, "just push the button and you will fall right to sleep!" LOL I like that one! But now I won't be able to do so, because everyone will be aware of my tactics! I would never! Or would I? JK The anticipation is driving me nuts! I want to go to sleep and wake up on Friday when dinner is ready! I am so excited. I hope everyone gives Tom the recognition that he deserves. He went out of his way to find me. And he is driving almost 2 hours just to eat with me and be of support. I am blessed in so many ways. Thank you everyone that has participated in making this night successful. I am honored by the responses of this community. I will get to put a face to all those wonderful e-mails and prayers finally! Don't be afraid to tell me who you are, because I want to know!

Wednesday, October 29, 2008

It occured to me today while doing an interview with Channel 3 News, that not many people know what Lupus is. I will make an attempt to explain it the best that I can!

Lupus, is a chronic inflammatory disease that can effect various parts of the body, especially the skin, joints, blood and kidneys. Lupus can be serious or trivial, disfiguring or unnoticeable, painful or painless, life threatening or of little consiquence. It is byfar a simple or ordinary disease.

Researchers have identified four types of Lupus: Systemic, Drug induced, Discoid and Neonatal.

I was diagnosed with Systemic Lupus Erythematosus (SLE) when I was 14 years old.

Lupus is an auto-immune disorder that has caused my immune system to turn against my body and attack my kidneys. Therefore, the result is Lupus Nephritis. About 500,000 Americans have lupus. Symptoms vary from person to person.

My symptoms over the years, vary from day to day. The most recurring symptoms include:
-Fatigue
-Joint pain & Swelling
-Hair loss
-Chest pain
-Anemia
-Skin rashes
-Sensitivity to light
-Raynaud's Phenomenon
-Depression
-Anxiety
-Fluid retention & Adema
-Headaches
-Confussion
-Severe hypertension

There are no clear answers as to what exactly causes a Lupus Flare or what Triggers Lupus to become active. The most common Factors that can tribute to Lupus Triggers include:
-Chemicals in hair salons
-Tobacco smoke
-Ultraviolet Light
-STRESS
-Genetics
-Medications

For more informationn contact the "Lupus Foundation of America, INC" at
1-(800)-558-0121 or visit there website at http://www.lupus.org

Hopefully I gave enough information for you to develope a slight understanding of Lupus. It is what it is and I am trying to make the best of my situation and be as informative as I can. Thank you for reading my blogs!

GOD BLESS EVERYONE!

Saturday, October 25, 2008

A friend of mine called today to ask me if I had seen the Weekend Edition of the St. Albans Messenger... I immediately went to the store, cause I had a feeling it was my interview. Sure enough, it was! My mother is beautiful isn't she? Me, not so much that day! LOL! I was asleep and the photographer came in, woke me up and said smile! But Melissa Betty did a wonderful job writing the story. And she got it in the paper durring the month of October! As you may or may not know, October is the month of National Kidney Awareness. It was very important to me to be in the paper this month rather than any other month. Thank You Melissa! Today has been a great day. I'm just so excited. I woke up and checked my e-mail and I had some very touching prayers and words of encouragement sent my way. They brought me to tears. Good tears! Everyone has been so wonderful to my family and me. I can't imagine going through this without the support I have now. I don't think I would be so stable. It's amazing how people come together in situations like mine. It makes a huge difference and the amount of stress that has been relieved is because of everyone's efforts to help us. I am forever debted to all of you wonderful people. And I plan to be just as helpful after my recovery. THANK YOU SO VERY MUCH!  Read the Messenger Article.  See the photo.

Tuesday, October 21, 2008:

Lets see.... What's new with me? Well I have two interviews this Thursday with my wonderful mother. The first one is at 7am with Fox44 and the second interview is at 2:30pm with the local channel 15. I am very nervous as this experience so far has been very emotionally challenging. I am getting anxious. The anticipation is probably the hardest part! I worry that I may get another blood infection. It seems to happen to me about every two months. I had to get rid of my kitty cat, Priscilla because I cannot change a litter box due to the ammonia. I would be risking another infection if I kept her. I miss her. She always greeted me at the door and followed me around the house. She napped with me whenever I was sleepy and she slept at my feet durring the night. If I talked to her in a certain voice, she would meow to me. I miss that. I miss the affection she craved. I do get to see her still. She lives with my dear friend Himey Halhonie! LOL That's an inside joke. Her real name is Jaime Balboni. Besides all of that, I am actually in a much better mood. I am stressed with the planning of who will be with me and when, after my transplant, as I cannot be alone for a while. DJ (the girls father) will have an apartment right here in St.Albans, so they will be able to stay at their current daycare and get on the bus from his place. That was a big concern. I am somewhat relieved at the moment. My mom and I went out to lunch today. I had to go straight from Dialysis as I was very weak and needed nurishment! I was a mess! Pajamas and I hadn't even brushed my hair! What a sight for sore eyes! My mom is wonderful. Everyday that we spend together I am grateful for. I wish everyone had a relationship with their parents as I do mine. I just want everyone to know how important my mother is to me. Yes this experience has brought us closer, in ways that we weren't, but my mother has always been there for me and our bond is unbreakable! I LOVE MY MOTHER! Now I seem to be going on and on about nothing and everything. It's time to say goodnight. Take Care. Give your mother a call and tell her how much she means to you. Or send her a card. Do something, cause every moment that you let pass you by, was a moment you could have taken to express your love for her.

Friday, October 17, 2008:

When your faith is tested, your endurance has a chance to grow. For when your endurance is fully developed, you will be strong in character and ready for anything. James 1:3-4 I plan to start the new year, with a bang! I will get a second chance at life! How awesome is that? I'm so overwhelmed with emotions right now, I don't know what to write. I'm very random at the moment. I am going to go to bed and maybe tomorrow will be a brighter day for me. I am trying to keep a positive outlook on things. It's hard. I'm not questioning my faith. If anything this has brought me closer to GOD and the people who matter most in life. I guess what worries me the most is the effect this will have on my girls. They are delicate angels. This has already affected them. But they are 8 year old advocates! They encourage everyone to be donors! They are wonderful leaders and they have no idea the power of their voices. It brings me to tears when Desi asks me if she can donate blood. Desire'e has her blood drawn for HypoThyroidism. She LOVES having her blood drawn because mommy has hers drawn all the time. We go together. She sits on my lap while mine is drawn and then while she is still on my lap, hers is drawn. The whole time, with a smile on her face! Destiny I'm sure would be in tears if it were her. But she still encourages others! They are amazing! I'm already in a much better mood! But it is late, so I am still going to say goodbye for now. Thank you everyone that has taken the time to get to know me through my blogs. This is me. Unedited of course. Raw and real. God Bless and thank you for all the love, prayers and support!

Sunday, September 28, 2008

I have had a dilemma with the process of my kidney transplant due to dental work that needs to be completed so I am free of infection. If not I would risk rejection of the new kidney. Needless to say that is not an option Dartmouth is willing to take. Nor myself for that matter. Anyhow I wrote a very heartfelt letter to my dentist, asking him to do the root canal (that he informed me I would need prior to my transplant) at the set rate medicaid provides for such procedures. It was quite touching I thought. Yet, he didn't even have the courtesy to respond! He has been my dentist since childhood and has been my daughter's dentist as of recently. He would have been paid for the work, just not at his rate as it is much higher than medicaid would pay. I can't get over the lack of compassion expressed. I am not a person who has failed to care for myself. I have been on chemo and many other medications since I was 14, thus leading to the medical urgency of repairing a tooth. Not my whole mouth, a tooth! Yes I am upset. Does he not have a heart? Anyway... A dentist who heard about my situation, and wishes to remain anonymous, called me! He called to tell me, he will do the dental work at medicaid's rate! Now here's someone that has never met me and took me in for the initial exam right away! And then, made sure to get me in within a week to have my tooth restored! I was so blown away by this mans generosity that it brought me to tears. Before I had heard from this man, Chuck Drinkwater called to tell me not to worry, that no matter what, I was getting the root canal and he was going to pay for it. I am not sure how I came off to him when he told me this, but I was speechless and very shocked! Of course I did not want him to pay for it, being that it was my problem. It's people like him though that give people like me hope. We need more Chuck's in the world! Everyone has been wonderful to me. I can't put into words the gratitude that I feel, but I hope everyone knows I am more than grateful. My mother and I appreciate all the wonderful blessings from Church of the Rock and our community. I just want to say thank you from myself, my family and my extended family. God Bless!

Monday, September 15, 2008