October 25, 2011

This is one of those times I wish both Sadie and I could write about how things are going as I feel that we both would have different takes on things. Yesterday Sadie saw Dr. M (surgeon) for a follow up both on her ankle and the broken bone. Sadie was only to be in the boot for about 3 weeks, but at week 6 she is more comfortable in the boot then out of it. I have been concerned that the bone wasn’t healing. I felt like the pain hasn’t seem to decrease and that is obvious as she doesn’t object (it’s actually not a question) to wearing the boot and because she has had several days of being very sore. The good news is the break is healed and looks good. That creates the questions why there is so much pain and now what?? Unfortunately the answer is not that easy. The very short of the long is that the area that she is hurting the most around the ankle is the area in which they removed the large part of the bone. It is very sore there and the swelling is still present. The other areas of her ankle seem to be better and that is good. Why does the top of her foot still hurt? There are two answers for that 1) the break took her back a bit in recovery and 2) because she has lost all motion from right to left (not that she had much to start with) her foot joints, tendons and muscles are having to relearn normal. Dr. M explained that in it (break aside) can be very sore, very tired and take some time to get use to.

So… where does that leave things? It leaves it with she is still recovering and although I can say to her “you were not suppose to be doing this well at this point” it is still hard on her. If you remember the initial recovery time put her to out of the boot by Christmas. When she was healing better than expected, she felt like she would be done and moving on and pain free. That is not where she is and she is frustrated by that. The good news is I still feel hopeful that this is just part of the recovery process and that once her body realizes that it needs to heal that one area where the bone was cut that she will have pain relief.

Dr. M wants to follow her closely; he said she should wear the boot if that feels best, try different braces to see if that is helpful, try different orthotic inserts. All of that has been done before (which is why Sadie doesn’t love those suggestions), but none have been done post surgery and he believes it will be different this time.

At this point, Sadie has decided to keep wearing the boot for a while longer until she is ready to try something different. We as a family have a very full plate, she as a student has a huge load right now and it is a hard time to “try” and see if something works. History has proven that just like working out, the initial try will cause her to be increasingly sore and at this moment she doesn’t feel like she has the ability to have the down time needed to recover from that.

Sadie has her regular infusions, eye doctor, rheumatologist and then another visit to Dr. M all before Christmas. I will update at that time.

Please be praying for Sadie’s pain, that her body would heal QUICKLY in the area in which is causing her pain. That her body would learn QUICKLY how to respond to a new way of walking. Please pray for Sadie’s spirit. Help her to feel hopeful that she won’t always be faced with pain. She left yesterday feeling pretty discouraged and down yesterday and it is really hard to watch because no words can assure her heart. I just ask that you pray for peace for all of us and honestly a miracle. It would be amazing to see her wake up one day pain free… please pray for this. Please pray for Bill and I as we continue to seek ways to help her learn to cope with the situations at hand. Once we learn something that works, it seems something changes. It has been a really, really long road for her and we are all (her especially) are tired.

On a really positive note: The rest of Sadie’s body is doing amazing. She has been able to reduce one of her medications (slowly); in the past 5 years every time this was attempted, it failed. The moment we would drop the medication to a specific dose her body would go into a horrible flare up. We are now on phase four of this process and she is still doing great. I feel that is a HUGE praise!!

I wanted to share a short story with you all also… it is a great way to describe a chronic illness to someone who doesn’t understand (written by a women with Lupas). Being that I too have arthritis I find this description to be really true and I hope that it can help you all to understand a bit more about what it is like to live with a chronic (often unseen) condition.

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; hell 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

One Small setback (September 15, 2011)

Quick update on Sadie – As previously posted; Sadie came out of her cast on August 26th. That was great, but by August 28th she was really swollen and experiencing quite a bit of pain (her ankle really started to swell out of the cast badly). She was so swollen, that we couldn’t’ even get the boot on her foot, we ended up wrapping her ankle and she crutched for a few days and then slowly started to put weight back on it. She realized that ice and elevation were going to be needed to get her over the hump. Sadie was determined to go back to school walking and she did… Sadie is a determined girl! However, before school started her little sister had a 2 day long soccer tournament. Day 2, Sunday, September 4th Sadie was walking (slowly mind you) and she stepped on a rock. Not a bolder, not running, not messing around, just walking and stepped on a rock… she immediately knew something was wrong… hobbled a bit and then sat down. Unfortunate we were not with her (she was going to the car and back). The next day her foot where her toes connect to her foot were black and blue and super swollen. I was sure at that point that she had broken a bone, but she wasn’t, she thought we should just give it some time (not to mention she was determined to walk into school with two SHOES on). So… we let it be. Sadie went to school and on Thursday she said “you know, maybe we should call the doctor, but please don’t call until after Friday because I don’t want to miss Unity retreat” (a middle school field trip). So, I called Friday after school and although we couldn’t’ fit into see Dr. M, his nurse agreed to see us and then find Dr. M if she felt needed. We went yesterday and as soon as she took her sock of his nurse said “well, okay… I will be back”. Back she returned with Dr. M and he looked at her and said “oh, so you broke it – that’s obvious”. Took x-ray, confirmed broke (actually “crushed”) her forth metatarsal. By the way… if you are doing the mathematical story problem, yes, she walked on a broken foot for 10 days!

Good news is that her surgical area still looks really good, the swelling in her ankle area is totally normal (and expected to be such for another 6-12 weeks) and as odd as this is, it is a really good thing this isn’t related to the surgery specifically (Thank you Auntie Maria for making that point to me!). The reason it happened is due to the fact that when you are non-weight bearing for a long period of time your bones can get soft and as seen, break easier. So, she is in a boot and encouraged to walk to build up her bone strength, but encourage to take it really easy and if it hurts, use crutches as needed. So far, the boot is alleviating a lot of the broken bone pain, but it’s aggravating her ankle a bit. So, it’s a double edge sword.

That’s where she is for now… otherwise Sadie is doing amazing… school has started on a good foot (pun intended, but obviously I am talking about her LEFT FOOT) and she has expectation that this will be a great year!

August 26, 2011

June 23, 2010 subtalor fusion with calcanus osteotomy
Recovery Plan: minimum 12 weeks hard cast – 2 months walking boot putting us into late December.

Today: OUT of the cast and into a boot AS NEEDED! Yes, you read that correct AS NEEDED.
9 weeks and 1 day and she is out of a cast and boot!
Sadie still has pain, swelling and is not able to use her ankle to full capacity yet, but that will come with more and more use. Her bones have healed… they look amazing and her body obviously has responded well to the surgery. Dr. M said to expect pain, it was a major surgery and it takes a long time to recover… he said pain could be another 6-8 weeks; not to be alarmed and to just read her body. He said Tylenol and pain meds are appropriate as needed, but only if needed and the boot is there as a cushion for bad days as needed.

This is nothing short of a MIRACLE… seriously who would have thought????? Oh, wait… God knew! Thank you for all your prayers and for those who provided meals, cards, activities for Sadie to do and support and love! Thank you, thank you! God is Good!!!

August 2011

A video made by: Sadie





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August 1, 2011

Good news and Good times...

I am buried in stuff at the moment and have not had time to put together thoughts around camp other than it was amazing and I feel completely blessed that we were able to go again. I will try to wrap my head better around that soon, but for now I have some good news to share.

Sadie had her follow up with Dr. M (surgeon) today. She had xrays done with her cast off (which gave me a near heart-attack to watch for no other reason than being an over protective parent). Dr. M came in and pulled up her xrays and showed us before and after photos of her sub-talar joint; you can visually see where it is fusing or as he put it "is fused". Her healing is doing amazingly well - so much so that.... she gets to start putting weight on her ankle.

Neither Sadie or I could believe it... seriously, after only 5 weeks 4 days - she can put weight on her foot!!! As Dr. M put it "weight + NO pain = stimulation to help bone healing" and "weight + pain = no healing". If she feels any pain she is to hold off putting weight on her foot for a few days and try again. Sadie said "how will I know if it is pain verses discomfort from not using it for so long" and he said... you will know and if it hurts... STOP.

Obviously we don't expect her to be walking tomorrow, this will be a slow process, but this is a process we thought we were 7+ weeks away from - this is HUGE!!!!

Due to the fact she had to have a new cast put on today she was not allowed to try the new weight rule until tomorrow so the cast can fully set, but tomorrow she will try it.

Sadie see's Dr. W (rhuematology) Wednesday and at that point I will do another update with an update on her "weight" experience. Hopefully I will also be able to digest a bit of the KAT Camp weekend to share.

We are SO grateful for today... this is a HUGE Praise. Thank you for all who have continued to pray for Sadie's recovery!!

July 14, 2011

Three weeks post surgery – 9 weeks left in the cast! We are all celebrating each week that goes by.

Sadie is doing remarkably well, she is a crutches master and jokes that when she is out of the cast she is going to attempt crutching stunts (she is wise enough to know not to attempt these with the cast!). Our house has found a new “normal” routine around crutching and have made several outings and she is moving right along in the right direction.

She had her normal remicade treatment this week… always a reminder of how blessed we are as we are surrounded by kids struggling to fight against cancer.

Sadie will see Dr. M (surgeon) on the 1st and Dr. W (rheumatologist) on the 3rd. I probably won’t update again until then, unless it is to announce a project Sadie had been working on (which I hope will be the case, but you can’t rush an artist).

Our family wants to thank each and everyone for their continued thoughts and prayers for Sadie. She is doing beyond any of our expectations and for that we are so very grateful!

June 29, 2011

Sadie is doing really well; actually amazingly well. I had tried to prepare myself for what I thought this first week home might look like and although it hasn't been free of challenges, it has been nothing in compared to what we had expected.

Her pain is still mostly under control, yesterday she had a harder day in the morning, but we thought maybe she over did things the day before and so she kept really still for the first half of the day and kept her leg elevated (this isn't as easy as one would think).

We have been making goals everyday... either, take a walk (in her wheelchair), take a shower (which requires her to get upstairs) or get off the couch and to the table to do something... the point here is to try and get her moving a little bit each day. Sunday we walked (she rolled) to the mailbox and back. As soon as the fresh air hit her she said "let's walk to the store!". I replied with "let's make it to the mailbox and see how you feel". After the mailbox she was done and appreciated that we didn't get to ambitious. Monday she wanted to make her goal to get upstairs and take a shower. She did it, but it was a lot of work (much more so than a walk to the mail box). Yesterday, we went to Bartell's (drove) and were there for about 10 minutes. Again, that was about all she could do. It is good though, I didn't think we would be even considering goals for a bit, so I am grateful for this much. There are times when we are home you would almost forget that she had such a major surgery, but these little outings remind us quickly of the reality that she is still very much in the process of healing.

When we are home she is getting a little stir crazy already (not that we mind being home, but when you know you HAVE to be home, it is different that choosing to be home). She has been drawing, painting, watching movies and playing a few games. More than once she has asked if her foot heals really well is there anyway she can get out of the cast sooner... I keep reminding her "it's only day insert number of days since surgery here".

All and all she is doing amazing and we can't say enough to how grateful we are for the thoughts and prayers that have been sent her direction. I would just pray leading up to, day of and during recovery that she be released of the burden of her ankle pain and I truly believe the Lord has granted her (and us) much Grace in this process.