Why so sick?

Hello everyone. This just a quick update to explain my complications. A lot of people have had questions so I figured I would add a post. I had Food poisoning this past week and most people get over it in a few days. With Scleroderma the GI tract can be compromised. The bacteria from the food poisoning made a little home in my intestines and caused bacterial overgrowth. On top of that, my acid reflux got worse and I was laying flat on my back for several days. The acid fried my esophagus, inflammed my sinuses and I aspirated a little into my lungs. This is why I am so sick. But I got the Cipro and my temperature has gone down. I hope I get to eat some yummy food soon.

101 and rolling out the Cipro

So I still feel like a Gremlin that was fed after midnight and the gastrointestinal nurse was sooo rude. She basically told me to take Immodium and eat potatoes. This may be a good approach but not with the attitude she gave me. Lesson number one for my girl Breanna...we are not numbers and even if we sound crazy....empathize anyway.
Anyways, since she pissed me off I called general whose nurse Holly is a doll with a Southern accent. She was so sorry to hear I felt crappy and took my symptoms and situation to Dr. Lux who also wanted it to run it's course but to call him if I have a fever. It is 7:09pm cst and all the docs are off duty. I get a fever of 101. I haven't had a fever since like the 5th grade. I guess I have to start Cipro tomorrow. Thank you Holly and Dr. Luxfor caring :).

What a weekend!

Well, I had my barium X-ray done on Friday and it took a day or two to recover.  Apparently Barium can do some really bad things to your digestive tract.....makes sense that you would drink it to find out if there is something wrong, LOL!  NOT!  Any who it came back normal so I am happy to say I do not have any strictures or problems with movement.

On another note, both Sharla and I woke up early Sunday morning with food poisoning (best guess).  We had both eaten something together the day before and both turned into the exorcist for about 12 hours.  We had the girls this weekend so super Jimmy stepped in and took care of me, Sharla, Lola, Addyson and Camdyn.  I am still so sick I can't even watch the food channel, LOL!  That's when you know its bad.

Sharla has recovered fairly well but I can tell it will be quite some time before I'm back to normal.  I guess it's pedialyte and soup for the next week.

I also forgot to tell everyone about the shoe shop.  They do make custom shoes but they START at $950.  I'm not so sure I can swing that so I am meeting with a foot doctor tomorrow to see if he can make some inserts for my shoes.  He thinks he can take some pressure off of my big toes so that I can wear my old heels :).

Barium Stinks

Hey Everyone!  Not much to write about today but went in to the Med Center for a barium Xray of my esophagus and small bowel.  It was not too uncomfortable but my tummy is paying for it NOW.  I'll let you know my results when they come in.  Happy long weekend!

Goin' Gastro

Today I had a charming visit with my new gastoenterologist, LOL!  Friday morning I will be going to Methodist in the med center for a barium X-ray to check my esophagus and small intestines.  Systemic Sclerosis can cause a weakening of the muscles at the lower end of the esophagus, which normally prevents stomach acid from coming back up....thus the horrible constant acid reflux.
I have also had a little extra trouble swallowing which could be caused by scar tissue building up causing the swallowing passage to narrow.  He also wants to make sure I do not have trouble with motility (weakness of the esophageal muscles) or have strictures in the esophagus.  
He said that many patients also end up with bacterial overgrowth caused by diverticulitis that is undiagnosed.  All of this can be determined from the barium X-ray which makes me very happy.  I was not looking forward to the words "scope" or "colonoscopy".  Good news for me.....but how am I going to break it to Jim that he has to put cinder blocks under 2 posts on my giant queen size bed, LOL!?

Also in the news.....I have my first Raynaud's ulceration on my left pointer finger.  It is so tiny!
Thanks for listening :)

February Update 1

How to start this update?  Hmmmm....well I guess I will start off by saying how sad I was yesterday because I was too sick to drop by The Village Shoe Shop to ask about some new sassy shoes :(.

However, on a good note I had my pulmonary function test yesterday and I think it showed improvement.  The doctor didn't talk to me afterwards but I always peek at the results before handing them to the doctors nurse.  I didn't see as many red bold numbers as the first time.

I also met with my new dermatologist today and it went very well.  She noticed that I have telangiectasias underneath my fingernails which is often associated with Scleroderma.  Telangiectasis are red spots caused by the widening of small blood vessels under the skin.  They occur under the skin and usually cause no harm unless they become enlarged.  This particular dermatologist uses UV therapy to help with the thickening and tightening of the skin but she did not feel that I was at that point.  I am very happy with this news because it involves 2-3 days a week at MD Anderson....no thank you!  She said I either have a mild form of skin involvement or I am just in the beginning stages.

She was also unhappy (as was my rheumatologist) about the lack of blood circulating in my hands and feet (from the Raynaud's which raged into full purple toes in the middle of our visit, LOL) so she gave me a nitroglycerin cream to help with the cold days we have been having.  I go back again in 3 months.

Tomorrow I will call my rheumy to discuss a visit to a Gastroenterologist and I may move up my echocardiogram.

Stay warm everyone!

Special Shoes

I am super duper excited to report that I found a special store in the Village that makes custom shoes for people with foot issues.  AND they can make them pretty!  I have been so sad giving up my cute heels for stinky flats.  Tomorrow after my pulmonary function test I will drop by to see what they can do.  Maybe I can get a sassy pair of heels I can actually walk in, woohoo!

So Many Different Types of Scleroderma - Mine Is Called Systemic Sclerosis

So I bought this book by the top Rheumalogist/Researcher of Scleroderma here in Houston and there is so much to learn.  She does an amazing job of explaining the 2 main types of Scleroderma which can each be broken down into 3 sub categories.....so technically there are about 6 different variations of the disease which confused me even more, LOL!

The variation I have is called Systemic Sclerosis or Systemic Scleroderma which as explained earlier affects internal organs as well as a small portion of the skin (hands and feet).  My questions were.....what exactly does the collagen do and why does it "overproduce"?  And why does the disease effect the heart, lungs, kidney and GI tract?  Unfortunately, the why part of my question doesn't have an answer which is why I don't have my magic pill.  In order to understand why these things are effected it helped to first understand what collagen is; Collagen is a natural protein that is made by cells and deposited outside of the cell.  It is what makes your skin firm, and it is the major component of connective tissue.  Connective tissue is skin, tendons, joints, ligaments and "capsules" around organs - it is what holds you together.  When you get a cut, collagen is laid down to form the scar.

As explained by Maureen Mayes, "The problem in Scleroderma is that cells start making collagen as if there is an injury that needs to be repaired, even though no such injury has occurred.  And once started, the cells don't turn off.  In systemic scleroderma this happens first in the skin, and then can occur in the lungs, the gastrointestinal tract, the muscles, and elsewhere in the body.  This excess collagen gets in the way of normal functioning.  The fingers don't bend well because of the collagen buildup in the skin; the lungs can't exchange oxygen for carbon dioxide effectively because there is a thick layer of collagen where a very thin membrane is supposed to be; the esophagus and bowels can't move effectively because there is scar tissue where muscle fibers are supposed to be and scar tissue in the heart can interfere with the usual electrical conduction system and cause an irregular or slow heartbeat."

She also goes on to explain that those with Systemic Scleroderma have the extra whammy of having to deal with vascular disease which causes the Raynaud's phenomenon and kidney disease.  Basically, the small blood vessels narrow and sometimes the blood channel is totally closed.

I hope this is helpful.  When people ask why, what and how it is hard to explain.

Next week I have a follow up appointment to see if my lungs have improved since treatment and I will also meet a new dermatologist that uses a special UV therapy on skin to break down collagen.     Hopefully, I will get to use my pinky fingers again, LOL!  I have an Echocardiogram scheduled for April but I may go ahead and move that up so my Rhuemy can give me the results in April.  I will update everyone then.......unless I get more words of wisdom from Maureen Mayes.

The Spoon Theory

Most people don't understand what it is like to live with a chronic illness.  I saw this story referenced on the Scleroderma support group website and I thought it was a great way to explain what it feels like.  It's very lonely and I often feel depressed knowing everyone else is out having fun.  And most people think I am weird for not getting out and doing fun stuff.  I don't have very many spoons so I hope you all understand how wonderful you must be when you receive one of my spoons.  Please read this story:

The Spoon Theory

by Christine Miserandino

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