Surgery and unexpected ER trip

Surgery went great yesterday! It was a short surgery and I have very little pain! He said that he cleaned up a lot of the torn cartilage that was catching and causing the pain. I have to leave the dressing on until Sunday and then the new giant brace will stay on until I go back and see him a week from Thursday. Right now I have only taken regular Tylenol twice since the surgery.

The biggest struggle we had was that I did not receive enough fluids during the surgery and my autonomic dysfunction really flared up! I ended up going back to the emergency room for more fluids. I felt like I was going to faint and had a low heart rate. After about 5 hours in the ER and 1.5 liters of saline solution I feel FANTASTIC!!!! Right now I think we are doing ok, just for the next surgery I now know that I need to make sure to ask for more fluids!

Surgery green light!

I have the green light for surgery on Friday on my right wrist. I have to be there at 6 a.m. and surgery should be at 8 a.m. My hope is that this should be a relatively easy and straight forward surgery; they are estimating I will be discharged around 11 a.m. or noon. My neurologist wants me to recieve IV fluids both before and after surgery to try to help with my low blood pressure and autonomic dysfunction. I will try to update you guys ASAP after surgery.

I also started school this week. So far so good! I am taking 4 classes, which is 12 credits. I am excited to get into my major classes for speech pathology! Hopefully my energy level comes up a bit to help me get through! Headaches are also much worse right now... I am thinking it might be one of the medications I am on. I will check back in with my neurologist next week and see if we need a medication tweak at that point.

Surgery time... again!!!

Hey all it turns out that I did have the TFCC (cartilage) tear in my wrist that we thought I had. I had the MRI on Tuesday, which stunk because I had to lie on my stomach which hurt my back and neck :( Anyways, I had my appointment today and the cartilage is torn for sure. My surgery is scheduled for next Friday 8/30. It is an outpatient surgery, so I will come home the same day. It is an arthroscopic surgery so they will go in through a few very small holes in my wrist and repair the torn cartilage and remove any lose pieces. It should be a relatively short surgery. We are not expecting recovery to be overly difficult, but you never know with me! I will be having the surgery done at NIMC (Centegra-McHenry) at 7:30 a.m.

The only concern we have is that the surgery will set off my autonomic dysfunction symptoms (heart rate, blood pressure, etc.) I contacted my neurologist via email today, but he is out of town until next week. Hopefully he will have some suggestions on how to make that aspect of my recovery easier!

Neurology Appointment

My appointment today was not as eventful as I expected! He upped one of my medications to try to get my blood pressure up even more. I am going up to taking the florinef 2x a day 3 days a week and 1x a day the other days. He also wants me to start on Prilosec which is a stomach acid reducer. This is to try to help with my mild acid reflux and the chronic nausea and low appetite. I also need to start exercising very gradually to try to condition my heart and blood vessels. This was not an option before medication and he did NOT want me to even try for fear of me passing out. I need to exercise laying down and very carefully so that I do not dislocate or otherwise injure my joints which I am prone to due to the EDS. I am looking into a recumbent bike because this is very low impact on my joints and is done in a reclined position. I will check back in with him via email in about 3 weeks to see how the increase of florinef is doing and how the prilosec is working.

The sad news is is that I have to drop sign language :( With my wrist we are too worried of doing more damage to it this semester and then since it happened in sign language class we do not want it to happen again or to a different joint. Both my orthopedic surgeon and my neurologist agree that this is necessary. I am pretty upset by this, but not surprised. Oh well, these things happen!

TFCC Tear?

I had an orthopedic appointment yesterday. It was not very eventful, basically they moved my wrist around, I came close to crying in pain, and they said I needed an MRI. They think that it might be a TFCC (triangular fibrocartilage complex) tear. The TFCC is a structure of cartilage on the side of the wrist where the pinky finger is. This structure helps to cushion and support the wrist when you grasp something or rotate the forearm. They at first thought this was unlikely since this is normally an injury associated with someone who falls on an out stretched wrist or some other injury with great force. With me though we know that nothing is "normal".

I have an MRI scheduled for next Tuesday 8/20 to confirm this diagnosis. I will then have another orthopedic surgeon appointment on 8/22 to discuss what the next step is. This is an injury that can be treated by bracing (which is what we are currently doing), casting, or surgery. Casting is normally only done for 3-4 weeks after the injury and it has already been 3 weeks since the injury, but this is still a treatment method he might use. Otherwise surgery is an option, but is normally not done on patients my age. Younger people tend to be able to heal without surgery, but again with my EDS (connective tissue disorder) I heal MUCH slower and may not be able to heal the cartilage at all. Overall, we will have to wait until after next week to see what exactly is wrong and what we are going to do about it.

I will update again soon since I have a neurology appointment tomorrow and hope to lots of things with him at this appointment!

Finally!!!!!!

I just took my bp and hr and wanted to share because it was so good! My bp is FINALLY up and my hr is down!!! This is one of the best numbers it has ever been! YAY!!!!!

Laying 103/66 59
Standing 103/74 85

I still have some adjusting to do with medications to get them just right, but this is a great start!!!! 

Spoon Theory

This is a short story called "The Spoon Theory".  It is specifically about a woman with Lupus, but it is highly applicable to me and all people with disabilities and illnesses. Hopefully it can help you to understand the limitations people with illnesses/disabilities go through on a daily basis!

*I did NOT write this or take credit for it in any way!!!!

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”.

- See more at: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/#sthash.DIWbUPR0.dpuf

New Medication

I heard back from my doctor today and he wants to start me on a new medication. I am going to be starting on a very low dose of a medication called Bisoprolol. This medication is in a class of medications called Beta Blockers. Normally, this medication is used to treat high blood pressure, but we are using it to bring down my heart rate when I stand up. It is difficult because we are trying to raise my blood pressure, so I have to closely monitor my heart rate and BP. 

Just to give you an idea of what my heart and blood pressure do when I stand up these are my numbers I sent to my neurologist. 

Saturday 8/3

110/73 63

104/81 112

Sunday 8/4

98/67 75 Irregular

106/78 114

Monday 8/5

99/67 61

107/80 85

Tuesday 8/6

100/69 68

106/70 100 irregular

Now these numbers are GREATLY improved from what they are without medication. My blood pressure is so much higher and is not dropping as drastically. My heart rate is also not jumping as much.


I have an orthopedic appointment on Tuesday and an appointment with my neurologist on Thursday. I will update sometime next week.