Monday, January 31, 2011

What a hassle!

Elijah's formula, Neocate One +, is being discontinued so the medical supplier called me a couple of weeks ago to say he needed to change formula. I guess his formula will change to Elecare. It is also another formula for Eosinophilic Gastroenteritis.

So it began.... around and around with the doctor's office and medical supplier trying to get it all worked out.

The medical supplier is saying the doctor's office said Elijah had to come in for a visit before they could give a prescription. And when I call the doctor's office for an appointment, they ask what is wrong with him and I tell them he needs a new formula prescription. They say that doesn't warrant an office visit.
HMMM it's not like I want to come up there in an office full of sick people. And I can't make him sick to justify an office visit.

Ole Doc must be doing pretty good if he can turn away money.

The doctor's office finally told me they sent a prescription to the medical supplier. The medical supplier says the prescription wasn't signed by the doctor.

I've talked all I can talk I'm not sure how to get through to these people.

If I get nothing else done this week, I have to get all this worked out so Elijah's formula will come SOON! Having a starving child is not going to be fun. I’ve been at this for a couple of weeks now, it has to get solved this week!

This really isn’t anything new… a new prescription is needed every 6 months and it’s always a hassle! Someone sitting behind a desk just can’t understand that when you need formula for your tube fed child you have to have it, you don’t have time for them to play around. Because even when they decide to send the prescription it still has to get approved by insurance, then formula has to be ordered by the supplier and then they turn around and ship it to us by UPS. This process doesn’t happen over night.

Please pray someone gets a clue and realizes this is a child’s life they are playing around with and prescriptions get sent and formula is shipped quickly.

Friday, January 28, 2011

6 more weeks….

I went to the doctor yesterday and he is keeping me on the chemo drug, Mathotrexate, for 6 more weeks.

I am not a med taker, I hate taking meds and especially a medicine that makes you sick. I can tell the drug has helped me, but yet it itself makes me sick.

Doc said I look like a new person. I do look much better than I have in about two years.

Also he said my immune system is very low because of the medicine so I need to be extra careful about being around people that are sick. So I’m asking all sick people please wear a sign so I will know to stay away from you! Go a head and wear a sign if you think you might get sick this winter. LOL

I could have cried yesterday when the doc said let’s do 6 more weeks. 6 more weeks of making yourself sick on purpose is not something to look forward to.


Methotrexate Side-Effects
Some of the common side-effects of methotrexate are as follows:

  • Increased Risk of Infection: Use of methotrexate may result to a decrease in the white blood cells produced by bone marrow, thus causing an increased risk of infection. The person may also suffer from headaches, aching muscles, sore throat, pain passing urine, or may feel cold and shivery.
  • Anemia: Anemia is caused by the deficiency of iron in the body and results in low number of red blood cells. There is a possibility of the person becoming anemic while undergoing treatment with methotrexate resulting to lethargy and breathlessness.
  • Diarrhea: Diarrhea is characterized by frequent liquid bowel moments and may cause severe dehydration. If the symptoms of diarrhea occur and last for more than a couple of days, while the usage of methotrexate, a doctor should be immediately consulted.
  • Nausea and Vomiting: The occurrence of nausea and vomiting are seen when the patient is prescribed with a high dosage of methotrexate.
  • Other Side-Effects: The other side effects of methotrexate include ulcerative stomatitis, abdominal distress, undue fatigue, chills, fever, leukopenia and dizziness. It is also inadvisable to become pregnant if any one of the parents, or both, are undergoing a treatment with methotrexate, as the developing fetus may be harmed.

I usually don’t get side effects from meds, but this one is so different. Severe headaches and muscle aches are a part of every day. Then at night I can’t rest because I ache all over. I toss and turn keeping Jody away until I move to the couch so he can sleep. Lately I just go straight to the couch so he can rest without me flopping around.

I’m usually so hot and everyone knows I’m a always hot and like the cold, but on this med I am freezing to the point that I am so cold I hurt.

Diarrhea and vomiting! I just don’t know why I haven’t dropped 100 pounds yet!!! And even if I’m not vomiting the waves of nausea that come and go through out the day are just as bad.

Life must go on! I do try to pull myself together and make the most of it. I feel like just laying in bed, but I want to be with my family and I want to make memories with them so I push myself to do more than I feel like doing.

I appreciate the prayers, that’s what keeps me going!

Tuesday, January 25, 2011

January Art

We have been having the best time out in Bayou Art Classes studio. I love painting!

Here are a few paintings I have finished and one I’m still thinking about.

One day I kept singing Jesus loves the little children, red and yellow, black and white they are precious in his sight… and I ended up painting this 20x20 acrylic.  I’m giving it to my friend, Nicole, so she can hang it in the children’s room at her church.


I love how this next painting turned out. I didn’t really have a plan, but I had fun painting it. 16x20 acrylic


I decided on a zebra print cross because no two zebra’s have the same stripes and it is a great reminder that God made each one of us different too. 8x10 acrylic


I’m still working on this piece. I haven’t decided what to add just yet. It’s a work in progress.


Here is some art Elijah has done in art class at Bayou Art during the month of January.

This 11x17 bird print was a fun project.163808_141459242581701_110081792386113_244756_618611_n


The students really enjoyed making this 11x14 acrylic marble painting. Each student picked out 3 colors and Elijah wanted a Mardi Gras look so he picked purple, green and gold. Turned out great and I love how Dakota frames their art work for them.


Night time landscape of birch trees in water color on a 9x12 canvas. I thought this turned out to be a cool picture.


Here Elijah is working on an 18x24 acrylic painting that he designed. I can’t wait to see it finished.



We have some exciting events coming up at Bayou Art Classes for February. Dakota will be doing an art class for 27 girl scouts where they will work on 3 projects. I’m having our homeschool group Mom’s Night Out at the studio and Dakota will give us an art lesson. I can’t wait to enjoy art with my friends. We have new students starting in February also.

If you want to see more projects done at Bayou Art Class check out our facebook page.

It's a workbook week!

Everyone knows I'm a unit study/lapbook/notebook kind of teacher, but this week is a workbook week. I have been feeling bad and not doing much of anything with Elijah as far as school goes. I just feel too bad to even make an attempt. He has been doing his TT 4 math that is on the computer. Over the weekend I prayed about what to do and the ole Spectrum workbooks came to mind so I looked through them and made him out some lesson plans for the week. I'm glad to have these workbooks to fall back on, but I don't care for that being our school for very long at a time. I much perfer real learning.

Today wasn't so bad,  Elijah did Math on the computer this morning before it was time for us to head out to the Spelling Bee where Dakota was asked to come be a judge. Elijah took his Word Study book in the van and did two pages on the way to meet friends for lunch. I almost hinted for him to go ahead and do two more pages so he would have Thursday's work already done, but I decided not to push.

We enjoyed watching the Spelling Bee. The kids did an amazing job. I can't even pronounce some of the words they spelled. I was really proud of each and every one of the spellers.

When we got home I told Elijah he needed to finish his work for today, but I wanted to go paint so he took his books out to the art studio and did the rest of his school while I painted, but yet was there to answer questions and help him along.

After he finished his school work he started on a painting that he is really excited about. Then we came in and both took a really long nap.

I hope the rest of our school week goes as well as today.

Thursday, January 20, 2011

Chemo Drugs are NASTY

This week I will complete the 6 weeks of the chemo drug I have been on. I tried the drug back in October, but it made me so sick I couldn't continue on it. When I stopped my health went way down fast so the doctor told me I needed to get back on it and stay on it. He said we would give it six weeks and then re evaluate. This Friday will be six weeks. It has been a ride that is for sure. With Lupus you are already sick and feel really bad everyday add chemo on top of that and it is horrible. Chemo is about the worst thing you can do to yourself on purpose. One night Jody was at work and I texted him if it wasn't for Elijah being so young I'd be ready to just die.

While I feel horrible and don't feel like doing anything I do try to push myself to do things even though I know I'll pay with pain later. Even the simpliest task that I used to take for granted are so hard for me to complete. Washing my hair for example. I'd love to go in there right now and wash my dirty hair, but I can't. My arms hurt and are so weak. One day Dakota was waiting on me to get ready so we could go buy groceries. I told him I need to wash my hair and I need to buy groceries, but I can't do both. Either I pull my dirty hair up in a hair clip and off we go or I wash my hair and stay home. I pulled the dirty hair up in a clip so we could have groceries that week. One day my hair needed washing so bad and I had somewhere to go that night, but I knew I couldn't do both. I had decided I'd have to cancel my plans because I couldn't go looking like a hag. Then I thought if I can just get dressed I'll go by a hair place and get a wash. I ended up in town all dressed up with my dirty hair and couldn't find a place to give me a wash. I called a friend and even though she has 3 young kids and was probably busy she said come on over. She washed my hair and even styled it. I was so thankful!

I don't go and do like I used to. I love to be busy and be around people, running from place to place, I am just not a homebody. Lately I've had to say no to many things that I really wanted to attend. It's a hard adjustment because my body can't keep up with my mind.

I think Lupus is hard for people to understand. Sure you can google it and read about it, but that doesn't really tell you what it is like to live with Lupus. I don't think my family really understands even though they see the tears and know I am suffering. It's hard to describe how I feel also, but I found this article that really explains what life with Lupus is like.

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