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Wednesday, May 15, 2013

Surgery This Morning

This morning at 9:30 I had another abdominal surgery (my 4th) and it all went well! The surgery was scheduled a little over a week ago, so thankfully they got me in fast because I've been in a lot of pain for about a month or more now. Sometime, hopefully very soon, I'll update as to why I needed another a abdominal surgery and where we are going from here. We are hopeful about some new options we have. But tonight I just wanted to let you know all know that the surgery went well and there weren't any complications! I'm doing as well as expecteded after abdominal surgery  

Thank you so much for your prayers! Please keep praying for my recovery from the surgery! 

Hope you're having a great week and have a peaceful rest of the week and weekend!

Monday, April 8, 2013

Finally an update!

I'm so sorry for not posting sooner. Thank you so much for being patient with me. I hope I haven't lost any of you because I haven't posted in so long. I've started probably over 20 posts and just haven't been able to finish them. I'll explain why in my big update post, which I am almost done with. I'm hoping to finish it today, and if not today, then tomorrow. I'm really trying to get it done today though. I really, really miss blogging, but there have just been things going on that haven't allowed me to finish the posts that I've started. I REALLY appreciate your emails to check on me and make sure that I am okay. They make my day and I absolutely love hearing from you, especially those of you who I haven't heard from before! So thank you so much for the encouragement, prayers, and emails to check on me. So how am I doing? I'm doing okay, just worn out and like I said, I haven't been able to finish all the posts I've started, which is very frustrating. My brain has been very overwhelmed lately, more than normal, which makes it hard to blog and figure out how to put my thoughts into words.

I had to go to the ER last weekend, while my parents were out of the country visiting missionaries from our church, for severe abdominal pain and we found out that I have more endometriosis, but I'll explain more about all that in my big update. Because of the endometriosis, I've had to have my pain medicine increased, and have also been put on Valium because my abdomen is so tight and swollen from the endometriosis. Because of my pain medicine increase and the Valium, I feel out of it which also makes it difficult to express my thoughts. But I'm slowly making progress. One step at a time.

These past several months I've been so frustrated that I'm still sick and missing out on a lot, and now I'm even more frustrated that the endometriosis is back and causing a lot of pain again. I've already had 2 surgeries for the endometriosis and tried several medicines to stop the endometriosis, but it's not working and our options aren't very good ones, but we're not giving up and we still have hope, but it's so frustrating. I'm trying to stay positive and remember that God is carrying me and my family through all of this.

The past several weeks, the sunrises and sunsets have been incredible. They make me stop and realize that GOD, the same God that makes these breathtaking sunrises and sunsets is holding ME in His everlasting arms, and promises that He has great plans for ME, and that through His son's sacrifice on the cross and because I accepted Him in baptism for the forgiveness of my sins and to receive the gift of the Holy Spirit, that one day, when God calls me home, I will be safe in His arms forever! And God promises all of this to everyone who believes in Him accepts Him in baptism! When I look up and see these sunrises and sunsets that take your breath away, I'm reminded that I can say "It Is Well" because one day in Heaven, all will be well, and I will be healed from this disease that is destroying so much and causing so much pain. It reminds me of such a great old hymn that we sing in church.

"Because He lives, I can face tomorrow, because He lives, all fear is gone, because I know He holds the future, and life is worth the living just because He lives!"


This first picture was the sunset right as we were leaving the hospital last week when I had to go to the ER for severe abdominal pain, when we found out that the endometriosis is back. I was so upset but felt a peace when I saw the sunset.


Beautiful sunrise one morning



The sunset Saturday night. This picture is not edited at all! How great is our God?!

This sunset was just after it rained, so the storm had just cleared and turned into a beautiful sunset!

Wednesday, February 27, 2013

I'm working on an update to post so it'll be done in the next couple of days! I've just been exhausted since my grandma passed away 11 days ago. I didn't realize how much goes info planning a funeral. For about a week, we didn't get home until very late after being gone all day to plan the funeral, so we are all very tired! Some nights we didn't go to bed until 3am! But we are doing okay, just missing my grandma a lot. It still doesn't seem real to me most of the time. But I'm so thankful that she's safe in Heaven with God, not hurting. I'll post a real update as soon as I can, which should be in the next day or two! Hope you're having a great week so far!!

Tuesday, February 19, 2013

My Grandma, Anita



"May 1, 1930 - Feb 15, 2013 Edmond Anita Jackson Hall passed away February 15, 2013. She was born in Madison, GA to S.E. and Lois Jackson on May 1, 1930. Anita attended Stetson University the fall of 1948 and then transferred to Harding College in Searcy, AR in the fall of 1949. She married Elmo Hall on August 10, 1951. She and Elmo became members of the Memorial Road Church of Christ in the spring of 1977 and have remained active members until her death. She is survived by her husband, Elmo Hall, of the home; two daughters: Janet Hall, of Edmond; and Teresa Wilguess and her husband John, of OKC; two grandchildren, Victoria and Landon Wilguess; brother, Harold Jackson and his wife Lois, of Sarasota, FL, and their three children. The family will be available to greet friends during visitation, Tuesday evening from 6 to 8 p.m. at Baggerley funeral home. Services will be 2 p.m. Wednesday, February 20, 2013, at Memorial Road Church of Christ, with interment to follow at Memorial Park Cemetery."

http://www.legacy.com/obituaries/oklahoman/obituary.aspx?n=ANITA-HALL&pid=163165941#fbLoggedOut



Like the obituary says, the visitation with our family is tonight and the funeral service, followed by a graveside service is tomorrow morning. Thank you so much for all your prayers and words of encouragement during this difficult time. We find peace and comfort knowing that she is with God now! We also love hearing memories about her so if you have one, please share them with us! We love hearing them.

Friday, February 15, 2013

My grandma is in Heaven

My precious grandma (my mom's mom) went to be with Jesus in Heaven tonight. She is HOME. "She has fought the good fight, she has finished the race, she has kept the faith" 2 Timothy 4:7

Tuesday, February 12, 2013

My Parent's 24th Anniversary!













Happy (late) 24th anniversary to the best parents in the world (Their anniversary was yesterday)! I don't know what I would do without them. They show us how to live for Christ every day and they've sacrificed so much the past 6 years that I've been sick-they never gave up when doctor after doctor couldn't figure out what was wrong, they took me across the country, looking for answers and did what they had to do, even when that meant going to a clinic that doesn't take insurance and is all the way across the country. That also meant that my family has had to spent a total of 6 months (spread out over 4 years) apart while my mom and I were in Nevada while I was getting treatment at the clinic where my Lyme doctor is. My dad and brother had to stay home so my dad could work and my brother could go to school, while they tried to maintain some normalcy since life has to go on, which I know wasn't easy when they know I'm sick enough to need treatment across the country and they can't be there to know how I'm doing. But my parents do what they have to do, and they've sacrificed so much. They've sat in the hospital with me too many times to count, feeling so helpless but never leaving my side, and comforting me as only parents can do, telling me it will be okay, even when they aren't sure if it will be. They've become close to being a nurse and doctor as they have to make big medical decisions on their own since my doctor is across the country and no one here knows about Lyme. My mom gives me shots, accesses my port for me to do IVs at home, and stays up way too late researching possible treatments all over the world, hoping for a cure for this disease that has invaded our family. This disease has changed our lives, brought many tears and fears, but the most important thing that my parents have done in our lives is made sure that we know that God hasn't changed and that we will praise Him always, even in this storm, because this life is temporary. Illness and trials like we are experiencing can break a family and cause them to be bitter toward each other and God, but because of my parents faithfulness to God and them teaching my brother and I, by example, how to live for God, these trials have only brought us closer together. We've learned that God does give you more than you can handle, BUT, He doesn't give you more than you can handle WITH Him. Because of that, we've learned to completely rely on God because He never changes, and we've learned to cry out to Him. My parents are incredible and I'm so thankful to God for them! "If you only look at us, you might well miss the brightness. We carry this precious Message around in the unadorned clay pots of our ordinary lives. That’s to prevent anyone from confusing God’s incomparable power with us. As it is, there’s not much chance of that. You know for yourselves that we’re not much to look at. We’ve been surrounded and battered by troubles, but we’re not demoralized; we’re not sure what to do, but we know that God knows what to do; we’ve been spiritually terrorized, but God hasn’t left our side; we’ve been thrown down, but we haven’t broken. So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. There’s far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can’t see now will last forever" -2 Corinthians 4:7-12, 16-18 (MSG)

Thursday, February 7, 2013

My Grandma

(I apologize if there are typos or anything in this post, I've been sick with a virus and this is a very long post so forgive me if something doesn't make sense)

I'm so blessed to have the best grandparents on both sides of my family. My dad's parents live in our neighborhood and my mom's parents live just 10 minutes away! I am so thankful for each of them. I know a lot of you from church know my mom's parents, Elmo and Anita, so I wanted to share with you what's been going on with them. I've been updating Facebook, but haven't had a chance to update here yet. Things have been crazy and I've just been exhausted. But I know many of you around the world know them and care about them so I wanted to update you.

This was taken last Christmas (2011)

My grandma, Anita, has had Rheumatoid Arthritis for over 30 or 40 years, probably longer. She's always struggled with her health but hasn't ever let that stop her. She's done so many treatments for her arthritis, including experimental ones, over the years. Apparently all the medicines that she's taken for the RA over the years have really affected her kidneys now.

This past fall, she started getting sicker, and they thought she might have cancer. They did tests that were inconclusive, so for several months they've been in the process of repeating those tests. So over the past 4 to 5 months, she's gotten sicker and weaker and they weren't sure why.

I got done with school last semester on December 13th, so Christmas break officially started the next day, Friday, December 14th. My brother, who is in 8th grade, still had a week of school left though.

So that Friday, December 14th, my mom went to my grandparent's house and found out that my grandma couldn't get up from the couch and was in a lot of pain in her back. My grandpa was home with her thankfully when this happened, so they were trying to figure out what to do. My grandma just wasn't doing well and they knew something was wrong. They decided they needed to call an ambulance and get her to the hospital. My mom called 911 and then called my grandma's rheumatologist while they waited for the ambulance. He told them to tell the ambulance to go to the orthopedic hospital because they all thought it might have to do with her arthritis or hip replacements or something else like that.

The fire department arrived first and then the ambulance came. The ambulance was at their house for about an hour before they left for the hospital because they were trying to get her pain under control and it didn't seem like a "real" emergency at the time. They got her pain more under control and took her to the orthopedic hospital.

When I arrived at the orthopedic hospital shortly after the ambulance got there, I could tell a difference in my grandma. She didn't seem normal. She was really confused and just not herself. They had started running blood work and did X-rays. The X-rays were totally normal, which ruled out problems with her hips or knees, but the blood work was not normal. It showed that her liver enzymes were off the charts high and her kidney function was terrible. They realized this was a medical emergency, and that she needed to be transferred to a regular hospital and not stay at the orthopedic hospital since everything orthopedic related was fine. So they got her transferred to a normal hospital that night, which is the hospital I go to the most and where all the ER doctors know me. They transferred her late that Friday night, so my dad took my brother and I home since all they would do was get her situated in her room since it was so late.

The next day, Saturday, when we arrived at the hospital my grandma was almost unrecognizable. She was so sick. She didn't really respond much and was so out of it. At that point, we didn't know why her liver enzymes were so high and why her kidney function was worse, but we knew something was really wrong. We stayed with her all day that Saturday as they continued to run tests. I'm not sure when they told us, but either that day or the next day, Sunday, they found out that she has severe congestive heart failure. That was causing the very high liver enzymes and the kidney problems. As I said earlier, she was getting sicker over the past several months and one of the problems were that her kidneys were not functioning very much. Throughout the past few months her kidneys have been functioning around 25% and when she was taken to the hospital they were functioning around 20% so they had dropped from her "normal", which still isn't normal at all.

So that Saturday, December 15th, and the next day, Sunday, things were not looking good. Friends and family were coming in and out and many were coming to say goodbye. But once they found the congestive heart failure, they started her on some medicines and she started to improve. I say that it was the medicines that made her better, but I also believe that it was mostly God answering the prayers of so many for her. But, even though she was improving a little after starting the heart medicines, her mental status was still not her normal. They attributed this to the high liver enzymes and/or the heart failure. She was so weak and lost the ability to do everywhere. She couldn't even swallow to eat or drink, but within a few days she was able to eat pureed food with help from someone.

She remained in the hospital for a week. She was there from late Friday night, to the next Friday. She continued to improve as they treated the heart failure, but was never her normal self. It was very hard to see her struggle to do everything. The week she was in the hospital, we took a small Christmas tree to her room to try and it make it more like home.



The hospital discharged her after a week because they had done all they could do for her, however, there was no way that she could go home. She was on oxygen, couldn't really feed herself, and couldn't sit up or move on her own. My family had to choose a skilled nursing center for her to go to once she left the hospital. They told us the normal stay at the skilled nursing center was 10-21 days with the hope that she would go home after that. At that time her prognosis was not really known, but they were hopeful that she would be able to return home like normal.

The nursing center has been incredible! They have long-term care, assisted living, independent living, a memory unit (Alzheimer's unit), hospice care, skilled nursing, a beauty salon, and probably other things I'm leaving out. Their food is pretty decent, the nurses are incredible, and it's like its own city. God couldn't have led us to a better place in this situation.

My grandma's first full day at the skilled nursing center was Saturday, December 22nd. Christmas was coming up very soon. We took the Christmas tree that we had in her hospital room to her new room in the nursing center.

This year was the first time that my grandma hasn't been the main chef for Christmas. She usually makes the main parts of the meal. So this year, my parents, brother, and I tried to copy her exact recipes. I have to say we did pretty good, but there's nothing better than your grandma's cooking and I know we all missed having her cook. We cooked the food at our house and then took it all up to the skilled nursing center for Christmas. We were able to get my grandma in a wheelchair and the nurses got us a room with a big table for us to eat in. My grandma got to eat some of the food, but she was still on a pureed diet because she was having to relearn how to eat. But she got to sit at the table and eat homemade food! We were all so thankful to be together, although it was bittersweet. We didn't stay at the table long because my grandma got really tired but we were so thankful for the time we did have. We went back to her room and opened a couple presents. I got to sit in the bed with her and help her open her presents. She was really tired by then so we were only up there for a couple hours. That was hard since Christmas is usually an all day event, but we knew to cherish the time we did have with all of our family.

Holding her hand one night

After Christmas, my grandma started therapy. There was speech therapy, occupational therapy, and physical therapy. So for about 4 to 5 weeks she had been doing those therapies. At the beginning, they said she would probably be there for 10-21 days, but she has now been there for about 48 days. Up until 2 weeks ago, we thought that she would be able to go home.

Two weeks ago, the doctors and nurses said they weren't seeing much progress with my grandma. She can eat by herself but doesn't eat much, she's able to have a conversation most of the time, but they said she is very sick.

The day they told us that they weren't seeing much improvement, they realized they needed to take my grandma to the hospital immediately. Since they found the heart failure, she has been on diuretics to help her body to flush out the fluids since her heart can't pump them out itself.

So about two weeks ago on Tuesday, January 22nd, she had increased swelling and they determined that the diuretics weren't working. She was on the highest dose that they could give her at the skilled nursing center and she really needed to see a doctor. They took her by ambulance and we were all called to the hospital because things weren't looking good. They increased the diuretics once more, but she is now on the highest dose. They sent her back to the skilled nursing center after about six hours in the ER since there was nothing else they could do for her. 

There were many, many hard meetings with doctors and social workers after she was brought back from the hospital two weeks ago. The doctors said that they thought the best option is to keep her comfortable and for her to just be surrounded by family and friends for the time that she has left here on earth, but of course my grandma and grandpa had the final say. 

The doctors can't do anything more for her heart or kidneys except continue the diuretics, her normal medications, and oxygen that she's been on since she was taken to the hospital the first time. It's actually not just the heart failure that's the only problem. If it was "just" that, she might be able to get better, but her kidney's are functioning at 25% or less and are also not making a hormone that stimulates the bone marrow to produce red blood cells, which carry oxygen throughout your body (at least that's how I understood it, I could be wrong). So her blood marrow is also not functioning as it should, and those 3 things are bad enough on their own, and terrible when put together. The left side of her heart is the side that isn't functioning properly, and that's the worst part of the heart not to be functioning. So, like I said, she is on the maximum dose of lasix, which is used to treat water retention caused by the heart failure since the heart can't pump fluids out like it should, but then the lasix almost dehydrates her, which makes her kidney worse. It's all a vicious cycle. She is still so swollen and it's only getting worse as her heart gets worse, which causes her kidneys to be worse. The reason that all of this happened so fast is because there has been so many problems going on for so long and no one has put them together. She had been seeing a kidney specialist and hematologist/oncologist for months because of the problems with her kidneys and bone marrow. So no one ever put those things together or caught the severe heart failure until it was so bad that we didn't think she would make it through the day after she was taken to the hospital on Dec.14th for the first time. It is very possible that she also had a mini stroke that day since she had to re-learn how to even just swallow and eat and drink after that day.  

After a week of praying and talking with doctors, social workers, my grandma, and our family, my grandma was put on hospice last weekend. She has stopped the therapy that she was doing and will only do what she feels like doing. We tried to figure out how to get her home on hospice, but unfortunately, she just needs too much care to be able to go home. But, she really likes it where she is, and we do too. The nurses have become like family and my grandma just loves them so much. 

The next few weeks and months will be very difficult for our family. My brother's 15th birthday was last Saturday and we are so thankful that she was here to celebrate with us. She remembered his birthday and even got annoyed with my grandpa because he didn't get a card as early as she wanted him to! That made me happy to see that she remembered and even got on to my grandpa about it! She still has her fighting spirit! She's already asked me what I want for my birthday which is in a couple weeks and that also made me so happy that she remembered my birthday too! I don't need anything for my birthday, I just want her here to celebrate with us. 

My grandma was officially put on hospice last Saturday (I think..), Feb.2nd, my brother's birthday. Last year on Feb.2nd, we were told that my best friend, Rebecca, would be going to Heaven soon because the cancer was everywhere. I can't believe it has been a year since we got that news. And I really can't believe that exactly a year later, on Feb. 2nd, my grandma was put on hospice. What a year it has been. 

Please pray for peace and comfort for my grandma. Please pray for our family, especially my grandpa. He and my grandma have been married for over 60 years and he hasn't ever left her side during this. We are thankful for every day that we have together as a family.

We know God is carrying us every step of the way, just as He always does. Times like these remind us of God's hope and promises. Times like these remind us that this world is not our home, Heaven is. Some just get there before us.


This song is perfect for what we're all feeling right now. It's called Worn by Tenth Avenue North. God is the only one who can give us peace and rest during this time.  Thank you for always praying.  

"I'm Tired I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world

And I know that you can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn

I know I need to lift my eyes up
But I'm too weak
Life just won’t let up
And I know that you can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn

My prayers are wearing thin
Yeah, I’m worn
Even before the day begins
Yeah, I’m worn
I’ve lost my will to fight
I’m worn
So, heaven come and flood my eyes

Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause all that’s dead inside will be reborn

Though I’m worn
Yeah I’m worn"


Wednesday, January 30, 2013

The book "Jesus Today" by Sarah Young (Also author of the very touching devotional "Jesus Calling"), who has Lyme Disease


(The quotes I use were taken from the article at the bottom of this post)

Sarah Young, the author of the popular devotional "Jesus Calling" that has touched so many lives, has been struggling with Lyme Disease for over 3 years and is still battling it. She lives in Australia but this article says, "she spent six months in the U.S. in 2009 getting 'intensive, expensive treatment' without seeing significant improvement". She has a new book out called "Jesus Today" that was written during her hardest times with her illness. '“I am convinced that if I had been healthier I would not have been able to write this book,' Young says of her latest offering. 'It chronicles my journey from discouragement to hope.'" I didn't know that she had Lyme Disease, or was even sick, but it makes me respect her even more. She has allowed God to use her and what she's going through to glorify Him and hasn't let her illness stop her! Did any of you know that she has Lyme Disease, or that she was even sick?? Have any of you read her new book "Jesus today" ? I can't wait to read it!! I'm so thankful for people like Sarah who allow God to use them.

http://www.publishersweekly.com/pw/by-topic/industry-news/religion/article/54756-sarah-young-amid-suffering-devotion.html#path/pw/by-topic/industry-news/religion/article/54756-sarah-young-amid-suffering-devotion.html


Tuesday, January 29, 2013

I know I said I would post last night but I ended up staying with my grandma longer than I had planned, which was totally fine and I'm so thankful for that special time with her, but then by the time I did a little homework I was exhausted! One post is almost done so I will post that later today. I'm starting physical therapy today, which I will explain in another post, so I'll be able to finish the post that I'm almost done with after my physical therapy assessment this afternoon! Thank you for being patient with me as I try and get caught up on my posts!!

Monday, January 28, 2013

Update

I'm almost done with a post that I will finish this afternoon, so it will be posted by this evening! It explains what's been going on the past 6 weeks with my family, specifically my grandma, so I will get that done this afternoon. I'm also hoping this week, maybe even tonight, I can post about a big doctor's appointment that I had last week, what I'm doing for this semester, and everything else that's been going on! I am going to start posting more, but you'll understand why I haven't been able to post much once I share what's been going on with my family. So be watching for a post this afternoon or evening!

Monday, January 21, 2013

Replying to comments

Well, I feel kind of dumb. I just realized how to reply to comments that people have left in the comment section...Lots of you have asked questions in the comments, and I've never realized that I can just reply to your comment there...I'm so sorry if you've left a comment asking a question and I haven't replied! Don't worry, it's not you, it's me. It probably seems like I don't want to answer your questions since I haven't replied to anyone; however, that is totally not the case at all! I just honestly didn't know how to reply to them. Now that I do, I am really looking forward to answering your questions and hopefully I am able to help you in some way.

I will try to go back and answer questions that you've asked in the past, but if you have a question and I don't reply, please ask me again in the comments of a recent post so I see it and can actually respond to it! I'm not sure how I will find the questions in the comments that you've asked before, so if you don't mind, it would really help me if you asked your question again on a recent post so that I can find it easier and reply to it!

I do read every comment and love them so much. They're so uplifting and encouraging to me! I really love hearing from all of you. Please keep leaving comments and asking questions since I now know how to reply! Seriously, when I'm having a bad day, I will go and just read your comments on my blog because they encourage me and remind me that God can use any situation for good. So your comments really mean a lot to me.

If you've never left a comment, I would love to hear from you! Where are all of you from? I'd love it if you left a comment and told me where you're from! I know I have readers on every continent except Antarctica! I would also love to know how you found my blog and if you told me your story!

Also, if you have emailed me directly and I haven't gotten back to you, I will try to very soon. I'm sorry that it takes me so long sometimes. Thank you for being patient with me!

So, once again, I'm so sorry if I haven't replied to one of your questions! I promise to do that now that I know how :)

Monday, January 7, 2013

What it's like to live with a chronic illness-The Spoon Theory

(The story I share here is incredible and so helpful. Please take the time to read this and share it with anyone you think might benefit from it. It helps people who do not have a chronic illness understand what it's like to live with one. It really is the best way I've found to help explain what it's like to live with a chronic illness, and how tasks that most people don't even think about become so difficult and tiring to us who do have a chronic illness. The story I share is called The Spoon Theory by Christine Miserandino. I hope this helps you understand more!)

Please read this first and then I'll comment on it at the end!


The Spoon Theory

by Christine Miserandino www.butyoudontlooksick.com

"My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”."
© Christine Miserandino

I love the way Christine explains this. One of the most frustrating things about having a chronic illness is trying to get people to understand what it's like to live with it every single day. And what I want to make sure people understand is that it's not their fault at all that they don't understand and don't know what to say or how to act. It's not your fault! Just remember that. 

It's common for me to hear, "you did this yesterday, so why can't you do it today?" Being chronically ill is very hard to deal with because it changes so much. One minute I will be fine, and the next I'll be on the way to the hospital. Our illness don't give us any warning about when it will strike. Like I said, I have been sitting somewhere (class, church, a restaurant), having a good time talking to people and all of the sudden I get really sick and either need to leave or go to the hospital. 

One of the reasons I haven't blogged much in the past month, and also this past semester, is because I've run out of "spoons" for blogging. Things such as walking to the bathroom from bed in the morning and showering are taking more "spoons" than they normally do. It's not a new problem, but I like I said, these tasks that we usually take for granted are costing me much more energy than normal. This too will pass, hopefully soon, and I'll be able to use more "spoons" for fun things like hanging out with friends instead of daily tasks that we normally do without thinking. Tonight I got to go out to dinner with two of my best friends! It was so much fun! But to be able to do that, I had to plan ahead and save "spoons" by going to bed really early last night and resting a lot today. We have to learn how to adapt to how many "spoons" we have each day, depending on how we're feeling. One day I'm able to go to a class and hang out with friends, and the next day I can barely even walk to the bathroom that's only a few feet away. I'm so thankful for the days where I have more "spoons"!

I hope this helps paint a better picture of how each day is different and that we have to choose how to spend our "spoons". Most days, I say to myself that I need to blog that night and I have a post all planned in my head, and then once that night comes, I'm out of "spoons" and am too tired. Tonight, I knew I wanted and needed to post, so I saved a "spoon" for that, so here I am! 

I am going to really try to post several times a week, maybe even daily this year. I love hearing from you and how God has used this blog to encourage you somehow. It really encourages me to know that God is using my situation to help others. If you would like for me to pray for you, I would absolutely love to! If you want to share your story with me, I would love to listen! If you would like to ask me questions about anything, I would love to answer them! Just leave a comment or email me directly (my email is on the side by my profile I think). And I apologize if it takes a little while for me to respond. I love hearing from you!!!

I will post again soon on what's been going on this past month!
Just want to let you all know that I'm still here and have a post almost done, which I will hopefully be able to post tonight! In the meantime, please pray for my grandma. I will explain in one of my posts in the next couple of days, but please be praying for her and my family. I will definitely post tonight and hope to post more this year. That was one of my New Year's resolutions!

I really, really appreciate the emails and comments making sure I'm okay since I haven't posted in a while, and I'm so sorry for not posting sooner. You will understand why I haven't posted as I share what's been going on in the next few days.

Once again, I cannot tell you how much it means to me when you check up on me, encourage me, pray for me, and all the other wonderful things you do for me. I can't thank you enough.

"I thank my God everytime I remember you." -Philippians 1:3

(I will also give an update about my friend, Alisa, who I asked you all to pray for in early December. I'm so sorry that I didn't post an update about that either! If you missed the post that I'm talking about, you can read it here http://victoriawilguess.blogspot.com/2012/12/prayer-requests.html)

Look for a post tonight!