Elijah’s Formula

The new formula came today. I’m so happy it came, but I’ll admit I’m a little nervous about giving it to him. He has been on Neocate One + (plus) for 11 years. I pray he can tolerate this formula well.
The new formula is EleCare.
I don’t like that this formula has to be measured.
The Neocate came in packs like this and all I had to do was open and pour it in a container of 6.5 ounces of water.
 
Just as Neocate was, the EleCare formula is very expensive. 6 cans is $204.00 I’m not sure at this moment how long 6 cans will last. When Elijah was a baby his formula was $40 a can and he used a can a day.

Just to explain how Elijah gets his formula…
After the formula is mixed up, it is poured into a feeding bag like this.

At the end of the tube I add an extension tube like this.

That tube fits into a plug on Elijah’s stomach next to his belly button like this. The balloon part is inside his stomach. I have to change his button if the balloon burst or if the button gets dirty and also when he outgrows the button size.

Then the tubes are ran though this pump.

If we are going out we put the feeding bag and pump into a backpack like this. Elijah doesn’t like wearing his backpack. It’s heavy and hot on his back.

If we are staying home then the feeding pump stays on the IV pole and the feeding bag is hung from the top. Elijah pushes the pole around the house with him.


Just a little info on how tube feeding works. Elijah has been tube fed for 9 years, before that he drank his formula from a bottle.

I’ll update on how the new formula is going after he has been on it a while.

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.

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!

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 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

Nasty Drugs!

My health has went down down down. I try my best to push myself and carry on.... at times it is very hard. Sometimes I just have to give in and say I can't do it and take the day off. I feel so guilty on those days.

I'm off Prednisone completly and I can sure tell it. Prednisone was keeping me going, without it I can hardly function. I hate prednisone, but yet my body wants it so bad. This is the longest I've been off of it since March of 2009.

My current meds are 400 MG of Plaquenil and 200 MG of Savella a day and 15 MG of Methotrexate a week.

Methotrexate is a very very nasty drug. Its a chemo drug and I'd rather do almost anything than take it. Matter of fact I skipped it this week. I take it on Fridays and it takes me until Wednesday to get over the sickness. Then I start all over on Friday. It's horrible! I'm going to have to work up the nerve to go take it again.
I've heard people say they will never do chemo again after doing it once.... I now understand those words. It's so hard to take something knowing how sick it is going to make you. It kills your bad cells, but also kills your good cells AND makes you so sick you think you're gonna die.

AND I have a family to tend to and a 10 year old tube fed child to homeschool! I'm usually so picky about my house being clean, but lately I just don't care. Well I care, I just can't do anything about it and I'm too sick to dwell on it.

I look forward to the day I will be healed and off these nasty drugs!

My Sweet Man

Jody spent last weekend in the hospital, but he is much better now.

Last Thursday he commented that he didn't feel well and by Friday morning he was in a great deal of pain. Friday when he came home from work several hours early I knew he was in major pain. Jody doesn't miss work for anything. When I die if my funeral is on a work day he'll go to work!

I tried to get him to go see a doctor but he wouldn't even think about it. As night came his pain got worse. I checked his temp and it was 101.1. I knew he had some kind of infection. I was thinking a UTI. I had made up my mind I was taking him to the ER even though he was fighting it.

We made it to the ER and they sent him right in for x rays and a cat scan. The doctor came in minutes later and said he had diverticulitis. They gave him some strong pain meds, started IV antibiotics and fluids.
He spent the weekend laying up in a hospital bed getting better. Thankfully he was able to come home on Monday. He is doing much better.

Elijah snapped a picture of Jody while he was in the hospital.

Got the GOOD shot again!

Sorry this is a little long....

Please pray I'm on the road to getting fixed! I'm so excited that I might be now starting the new meds that I need to get me on the road to feeling better. I'm also afraid to get my hopes up too.

Tuesday I woke up with a red splotchy face...all over!  I was really so sick. I did go to our co-op orientation even though I felt so bad. I could have called in and the rest of the Advisory Council Ladies would have completely understood, but I wanted to go. I don't want to drop out of life.

I woke up with my face like that two weeks ago and I went in to see Dr. Altick. I've been seeing Altick for over two years now really regular, but I've only ever talked skin issues with him. He is fast in and out of the room so you say what you can before he is out the door. But I do like Jay. He has tried so many things with me and hasn't given up. My primary doctor gave up on me. Back to my face two weeks ago... He gave me a shot of dexamethasone and made me an appointment with a new allergist Dr. Giannobile (who I just loved, he is the complete opposite of  another local allergy doc we have here.)

Dr. Giannobile was very thorough. He ordered a ton of blood work. I couldn't have the skin testing done because I take a lot of vistaril. And I was so glad, I didn't want to add scratches to my body, I have enough going on.

He called me the next Friday to ask if I have been tested for Lupus, my ana was + and my sed rate was high. Also something else that measure inflamation in your body was really high and he said as much prednisone I take I shouldn't have that inflamation. Then he said and when you were in the other day I noticed you have the malar rash on your face. (That malar rash comes and goes, sometimes it's bright red and sometimes it's faded and make up covers it up.) I told him my ana has been + and my sed rate has been high since 2007 at least. He said he would let me know when the rest of my test came back.

This Monday Dr. G called me three time. That man is so worried about me. The 3rd time he called he said "just promise me you are going to get your CBC rechecked." WOW I hope he stays that way and doesn't change when he get so busy with patients.

He first called to say I was allergic to dust, but he doesn't think that is what is causing my problem. He thinks the skin issue is all related with everything else I have going on. The second time he called he said he is sure I have lupus and we talked about Rheumotologist and finding me a new one.

Tuesday morning I woke up with my face the way it was two weeks ago. I was so miserable. My joints hurt so bad and I was stiff all over, I couldn't even turn my neck. After orientation I met up with Dr. Pam for tea. She decided I need to go back in to see Dr. Altick and get another dexamethasone shot just to get some relief for a couple of days.

So after a long miserable night of crying in pain I called at 8 am and got an appointment with Dr. A. The nurse asked how I liked Dr. G and we talked about that visit and his phone calls to me. She called and had them fax over blood work. I think Dr. A called Dr. G too. Something she said at one time when she came in the room sounded like they were on the phone.

Dr. A walked in the room and asked if I had heard of a drug called Plaquenil. (yes, I had, my Dr. Pam (a friend who is a nurse and her husband is a nurse) had researched and said she thought I needed to be on that. ) He started me on 400 mg of Plaquenil and in two weeks will start me on methotrexate shots. Again just what Dr. Pam had said.
He didn't want to start two new drugs at one time. So that is why he is waiting two weeks to start the shots.

As I went to check out I looked in my file to see what all he had written down. He wrote those plans down and under that he wrote Lupus. So he didn't give me the diagnosis of Lupus out loud to me, but that is what he is treating me for.

I also got the shot of dexamethasone today so that will give me some relief for the rest of this week. I might not sleep, but I won't be crying in pain, instead I'll be looking in the fridge. :tounge2:
I have a love/hate relationship with steriods.

I'm not hung up on getting a diagnosis, I just want a treatment that is going to help me feel better, even a little bit better.

So anyway, I hope I am on the road to getting better now! Told ya it was long!
Please pray I do get better and the sooner the better! :thumbup:

Wasted Trip

Last Monday I had a doctor appointment with the Rheumotologist 2 hours away from home.

Thankfully Dakota wasn't busy so he was able to drive me over. I was so looking forward to this appointment because I knew I was going to be seeing the Nurse Practitioner. I figured she would listen to what I was saying and ask me questions and help figure out what needs to be done.

I had my hopes WAY to high! She was rude and crude just like the doctor. What did I expect, he trained her.

If I hadn't had to pay for a doctor visit, gas in the van, wear n tear on the van and my bald tires, eating out... ummm scratch.... that eating out was the best part of the trip, this could have been a comedy!

She came in the room fussing at me. She said I was supposed to have sent some paper work from another doctor that I see. I told her this doctor said he didn't need it. She was going to set me straight. I just happened to have the letter in my notebook so I pulled it out and showed her. She said "Oh he must have forgot" and changed the subject.

She was no help at all. She was not happy that I had typed out a list of my symptoms. She said "I've never had a patient to give me a typed list of their symptoms." She kept saying stuff like "I don't even know what to do with this. How do you want me to address this?"

Her advice for me was that I need to go to counseling to find out why I hurt so bad! Wait! What? Yes, she really said that. This week while I was in Wal-Mart wondering how I was going to make it to the front of the store (I had made it to the back, sat down on a bench, sent the kids to get different things) and had tears welling up in my eyes from the pain and from embarrassment that I'm in this bad of shape I thought about what she said. I had a few words I'd like to have shared with her at that moment.

She also told me I need to get a sleep study done to find out why I can't sleep. Last night as I laid on the couch crying, moaning and yelling out from the pain every time I moved I almost laughed thinking of what a sleep study person would write down if they were watching me. Ummmm Lady can't sleep because she won't stop crying.

Also everything I asked her about she would say "You need to see your primary doctor for that."
Let me just go ahead and say when I ask the primary doctor he is going to say "You need to see the Reheumotologist for that." Who knew, I could be a doctor? I can say "You need to see ____ for that" every time I'm asked something I don't know.

She did say I have all the markers for Lupus and my ANA is +, but then she said it could be 10 years before you get the diagnosis.

They drew some blood and gave me a return appointment that I will be calling to cancel. I'm not going back over there. I'm sure I can find someone just as rude that won't listen to me right in my town.

For now I don't know what my plan is. I put in a call to my primary doctor's office the other day for prescription refill, but didn't hear back. My primary is actually out having back surgery so I expect to hear from his NP this next week. I'm also going to give the allergist a call and see if he got more of my test results in.

Oh I don't think I posted that the Allergist called me. He called and said they had some of the test in but not all. He wanted to know if I had been tested for Lupus. He said my ANA was + and my sed rate was really high. I'm told that every time I have blood work done. Then he said and when you were in the other day I noticed you have the malar rash on your face.

I really don't care if I don't get a diagnosis for anything, I just want relief so I can feel better!

Give Me That Shot Again!

Yesterday I got a shot of dexamathasone. I wish I could get a shot of that every week. I've had such relief today.

It is a steroid which hypes you up and keeps you awake so I was unable to sleep all night, but at least I was NOT crying in pain.

This morning Dakota took me to the doctor. It was the allergist appointment the dermatologist set me up with yesterday. I loved the allergy doctor, he was very nice.
He wanted to do the skin test allergy testing on me, but since I take vistaril like candy he couldn't.
I was really glad though because I have enough going on with my skin and I don't think it would be a good idea to add scratches on purpose. So he sent me for lab work. Lots of pages listing out the lab test, the lab tech actually said "You have a book of test."
They will call with those results later on.

Next we ate some lunch before heading to Wal-Mart to get some groceries. I got some salad stuff. Then we headed to Target and got more prescriptions filled. For someone who hates taking meds I sure do have a collection of them sitting here on my desk.

The plan is to take it easy around here for rest of the week and through the weekend, get some school done and just enjoy life. Monday the kids and I will head to Shreveport for my Rheumatologist appointment.

I hope the affects from the shot will last a few days.

A Renewed Hope

I had a very bad weekend that seemed to be getting worse by the minute. I was so glad when 8 AM rolled around this morning and I could call to get an appointment. The girl who answered the phone told me I couldn't come in today and I started crying. She asked me if it was an emergency and I said YES. She said I could come sit and get worked in.
I honestly felt like I needed to be in the hospital not just going in to the office.

When the doctor walked in the room he said "OH My God, What happened to you?" First off my face is very swollen and then Saturday I woke up with this red splotchy raised whelps all over my face and neck. It is like one big whelp but just running every where.

My skin is also flared up really bad. I'm so sick of this. I've dealt with this for so long with out any relief at times I feel like I can't go on any longer.

After being up all night crying in pain and spending the day at the doctor, who wrote on my paper once again contact dermatitis because he just doesn't know, and getting prescriptions filled I finally made it home, got a shower and went to bed. I cried and cried and called out to God for relief. I can not live like this. I feel so sick I feel each day could be my last day on earth.

When I woke up I came to my computer and googled a bunch of different stuff, but basically that I feel sick all over and doctors can't help. I came up with Candida yeast infection.

I'm going drastic! I've got to give it a try. I can not live like this another day. This will be very hard, but I'm going to give it a go. Please pray that I have the strength to keep this up so I can see if it makes a difference in my health.

I have been on high doses of prednisone for well over a year now and my readings tell me that can cause this infection in your body.

With Dakota's help we've came up a small list of foods I can eat. It's the middle of the month and grocery funds have already been spent on foods I can't eat, but I'm going to buy some salad stuff and start from there.

I have an appointment with an allergist Tuesday morning. I hope he has some ideas to help me. Next Monday I have an appointment with my rheumatologist in Shreveport. Actually I'll be seeing his NP and I'm looking forward to that because I know she will sit and listen and ask questions, not like the doctor who I feel like just sticks his head in the door for a few seconds.

I LOVE how God speaks to me and knows things I don't know a head of time. Last week I started to pay something I owe. I reached in my bag and touched the envelope I had the money in. I heard WAIT. I was ready to pay so I really didn't know why I should wait, but I did even though it felt strange. I didn't know I was going to get this sick and have two doctor visits this week. But Jesus did. I was already wondering how I was going to have gas money and doctor plus prescription money for the rheumatologist in Shreveport next week, which happens to fall two days BEFORE payday. Now I've added two doctor visits and the 4 prescriptions from today. I don't know if there will be more prescriptions tomorrow.

Dakota is googling recipes for me right now. I love that kid! When payday rolls around he'll help me buy some foods I can eat.

So far in this horrible journey the only thing that has made me feel even a little bit better is when I'm in the bed so sick I can't get up and Elijah comes in to lay down with me for a few minutes and he prays for me. That is so precious to me. I hate that my child has to worry about me and pray for me like he does, but I love it when he does pray for me.

Even though I have two more doctor appointments coming up I don't have hope for answers from them, I'm going anyway... just in case! But I'm feeling a renewed hope in trying this candida/sugar free food list.
Please, yes, I'm begging you, pray for me to be able to stick to this for at least a couple of weeks to see if I can tell a difference in my health. Thanks friends.

Gosh I have rambled on and on....

The Pain Behind The Smile

When I'm out and about I try to smile and not complain about my health. Gosh I do enough of that at home anyway. I really just don't want to be a downer around people so I just smile and struggle through.

That might be confusing for some though. I really am sick and it is so hard to do things I really want to do.

The Savella does help. It takes the edge off, but it does not take the pain completely away.

We had co-op registration the other day, 9am - 3pm. That was a long hard day for me. By the end of the day I was in so much pain I got in the van and cried. We did have a heat issue too and heat always makes me feel worse. That night my skeleton and muscles hurt so bad I laid there and cried. Jody said even when I did doze off I was whimpering like a dog.

I knew the registration day were coming so I upped my prednisone in hopes that it would help me get through the next few weeks. I don't think it worked!

I spent Thursday in the bed barely able to move. Guess what Thursday was our first day of school too. HA I have a design to where Elijah can still do some school even on my bad days.

Anyway many people ask me how I am and I always say okay, but the truth is if you think about me please say a prayer for me. Some days are almost unbearable. I am so thankful for the days where I can at least get up and out.

Along with the Fibromyalgia I have also been diagnosed with Sjogrens syndrome and Connective Tissue Disease. My test for Lupus have also came back pos 4 times. I go back to the doctor August 23 so we'll see if he has more to say about that.

I thank my family for being understanding and putting up with me. I hate being like this and wish I could do all that I really want to do. If only my body could keep up with my brain!

I want off this roller coaster!

An update on my health.

On my bad days I can hardly get out of bed. I hurt so bad. I know my kids get tired of seeing me crying all the time.

This week I upped my Prednisone and I'm seeing some improvement. At least I'm getting around.
I hate being on Prednisone, but I just can't live without it.
I hate the way it makes me hungry all the time too.
http://www.youtube.com/watch?v=ygWO30gdpK4
I'm also taking Vistaril like candy and that keeps me groggy. Savella is helping just enough to take the edge off.

The heat is a big killer for me too. Any heat makes me feel worse and if I sweat I pay the price later.

Please keep praying for a healing.

I don't know to laugh or cry

I went to the Rheumatologist today. But before I share I want to recap that Dr. Rutherford that I have been seeing told me I was out of his league and I had to find another doctor. Remember that part.

He had obiviously reviewed my files from 2007 before the appointment because he kept referring to how I was then compared to now and after x rays he noted changes from my last x rays.

So I started out telling him how bad I feel and how my bones, joints and muscles hurt. He asked what I was taking for the fibromyalgia and I told him nothing, but shared that I had tried Lyrica and told him about the swelling it caused. He wrote down two meds on a post it note and handed it to me. I didn't know whether to laugh or cry. I was thinking Target isn't going to take this. Then he said to tell my doctor that I need one of these meds. I told him my doctor said I was out of his league and I should find a new doctor.

Then I told him about my skin and everything I've tried and showed him what shape my skin is in. We talked about the prednisone. He didn't really seem to care that I have been on the prednisone for so long. I told him I wanted to get off of it, but he didn't comment.

He had me to get up on the table and he did a thorough exam and noted that I had some swollen joints, which is surprising since I've been on prednisone.. He also said it is hard to examine someone with firbromyalgia because of how tender they are. I can't help that, every touch hurts.

I told him my ana has came back positive 3 times now and he said it always will. I asked him what that meant and he said something I don't understand about antibodies and arthritis and lupus. So I asked him about lupus and he said Dr. Rutherford would know if I had lupus or not. I told him I believe Dr. Rutherford wanted me to see someone else for that.

Then he sent me to x rays and they x rayed every bone in my body.

Back to the room and he came in to look at x rays. He noted some arthritis, but not as much as he had feared. He said my spine doesn't curve correctly. My muscles in my neck and across my shoulders are stretched tight. The muscles are also like that in my lower back and rear. The tight stretched muscles are painful.

He said he was going to order blood work and send the results to Dr. Rutherford.
Dr. Rutherford has already done his own blood work and decided I needed to see someone else.
So I repeated that Dr. Rutherford said I was out of his league and to find a new doctor. This didn't faze him because he continued to say once he got the blood work back he would write up a report and send it to Rutherford, but he should have it in about two weeks.

Then he was standing handing me my file and told me I needed to reduce my stress as he shook my hand and left.

My next stop was the lab where they drew 8 tubes of blood.

I feel like I wasted a day, gas, wear and tear on my van driving over there and my $$$. And to top it off, Jody took off a day of work to take me over there.
He didn't tell me anything, nor did he give me any prescriptions and he is going to send the results to a doctor who said I was out of his league. I have no idea where this leaves me.

Praying for answers

I have an appointment with a Rheumatologist on Monday in Shreveport. I hope to get answers and some type of treatment plan.

I did see this Rheumatologist back in 2007. He diagnosed me with firbromyalgia and connective tissue disease back then. Also my ana test had came back positive then.
So after I made this appointment he sent me a letter saying they need to test for lupus.

Lupus has came up a lot here lately. I do have the classic symptoms. My ana has came back positive 3 times now.

All I know is that I am sick and feel so bad. Some days the pain is unbearable. Prednisone is the only thing keeping me going the little that I am able to do, but I need to get off the Prednisone... it's killing me. The bad news is Prednisone seems to be used commonly to treat lupus. :(

I just want a treatment plan so I can start feeling better. I'm sick of feeling this way. I miss doing things that I'm no longer able to do.

Am I going to get better? Some days I feel hopeless. I worry about my kids, Dakota will be 18 next week, but Elijah is only 10, he needs his mom.

Please pray that I get answers and a treatment plan so I can function and be able to do things I want to do.
Thanks friends

Would appreciate prayer

I went to the doctor today. I figured we would try something new and I had high hopes for something to give me relief. I was so disappointed with the out come of today's appointment.

He told me I was out of his league and I needed to find another doctor.

I'm already in so much pain and just feeling horrible so I've been down, but tonight I am really feeling down and feel like there is no hope for me.

I'm trying to look into all my options and praying that the Lord shows me what I need to do.

Still needing prayer.

I stopped taking Lyrica and the swelling in my hands, feet and legs have went down. I can get my shoes on now! I'm back to my regular dose of Prednisone. I just can't taper off. Even on the regular dose I'm still itchy, but it's tolerable.

I feel very weak. I have no energy, my arms feel so heavy, I can barely raise them up. My legs are also heavy, weak and feel like jello. And I can't stand for very long at all or my back starts hurting. I feel like I am such a mess! Please pray all this passes soon....

My health

Posting an update on my health to ask for prayer.

I am miserable! I don't know any other way to put it.....

Prednisone is surely killing me. I'm on Prednisone and Lyrica and they both cause weight gain. I have gained so much weight in the last month it is scarey.

I've tried to taper down the prednisone several times, but my body won't let me. The itching never completely goes away, but on the prednisone it settles it down to a tolerable amount. When I try to tapper off, it flares up and I am itching like crazy.

I can not stay on prednisone. Oh and the lyrica causes my hands, legs and feet to swell up like Popeye.

I just feel like crying. I need to start going in the other direction soon! I feel horrible! Please pray I can get off prednisone.

H1N1

Yep, H1N1 got Elijah. He was very sick for about 5 days then the next day he felt so much better.
He can't take meds so we just suffered through it.

He started out with a headache that he cried all night long with. He had fever, chills and was shaking. Then his nose started pouring and he started coughing and then the throwing up came.
It was a rough few days.

We stayed home all week and gave him the weekend to recover, but on Monday we jumped back into life and took some field trips, then Tuesday we had some running around town to do. Last night he felt bad when he went to bed and today it is nearly 1 PM and he is still asleep. He gets run down so easily, he needs his down time.

We had planned to make it to co-op this week, but last night I got the van stuck in the mud when I got home. I guess Elijah needed the day off anyway.

H1N1 seems to be making it's way around in our homeschool group, as I'm sure it is everywhere.

Hospitals are not fun!

What's up with a hospital not having wireless? I couldn't believe they didn't have wireless.

I've been sick for a while and it has just been getting worse and not better. I'll back up and tell the whole story.

Back in February - April of 08 Elijah was sick and in the hospital twice during that time. One morning I woke up with a raw red itchy place on my arm. It was SO itchy and it burned with pain.
I went to the dermatologist and he said it was contact dermatitis and gave me some cream. It didn't really get better, but it was tolerable. Before I knew it I had it on the other arm and on my leg. I went back to the dermatologist and and he gave me a new cream to put in it.

By early 09 I had this on both arms and legs and on my sides. I was miserable and itchy. I went to the dermatologist in February and March. At the end of March it was really bad. I told the dermatologist how miserable I was. He put me on Prednisone and it really helped. Things calmed down and I felt much better. Once I finished the Prednisone it all came back and even worse.

Over the summer I went to the dermatologist ever two weeks. I stayed on Prednisone and each time I'd finish a round the rash would get worse. I even visited a different doctor and didn't get any answers. I was miserable and couldn't function to do things I needed to do everyday.

I've been on every med there is for itching and non have helped. Most seem to make it worse. I had an allergic reaction to Neurontin and that was really bad. The dermatologist kept saying it was an allergy in my skin and there was nothing that could be done about it. I just couldn't accept that. Something had to be done because I couldn't live like this.

A friend's husband works at a hospital so she asked him to talk to a doctor and see if he would see me. The doctor agreed to see me and once he did he thought I had a staph infection. He told me I needed to be in the hospital and plan to be there for two weeks.

Once I was at the hospital they did all kinds of blood work and even took 3 skin biopsies. They determined I did not have staph, I have asthma skin. There is no cure for asthma skin.
So now I'm home, itchy and miserable. I did get a new ointment from this doctor, but it has not helped yet.

Please pray I get some relief. I can not live like this.

Today has been a fog

I'm not even sure where the day has gone. I'm groggy and sleepy.

Let me back up to Thursday night. My plan was for us all to go to bed early! So around 12 AM I started moving us all that way. Yes, 12 AM is an early bedtime for us. We are night owls and our usual bedtime is anywhere from 2 - 4 AM, but it's no surprise if we all of a sudden realize it's 5 AM we need to go to bed. I am most always up by 8 or 9 AM no matter what time I go to bed, but I'll sleep to 10 once in a while. We just don't need much sleep. I've also been known to stay up all night and then carry on with the next day's plans.

So we were getting ready for bed. I get Elijah tucked in and a few minutes later he throws up, so I move him to the futon in the playroom and put some Phenergan cream on his wrist. He felt bad and just wanted to be with me. Jody has to sleep because he has to get up for work. I fixed Elijah and I places to sleep on the couch. He still feels nauseated and miserable all not long. At 5 AM I told him he had to go to sleep because we had to get up at 7 and go to co-op registration.

When we got to co-op he started crying that he was nauseated so he took in the garbage can from the van. He never did throw up and started feeling better after a while. Two boys his age came in so he hooked up DS games with them and they played.

Elijah does not have a virus or I would have never taken him out around people, it's just his stomach and the way he is. We are still having a hard time trying to get his formula intake back up. His body is being stubborn and not tolerating much formula. He is not getting no where close to the amount he was getting before his surgery.

When we left Elijah started telling me how bad he felt all day. He did seem to perk up about half way through the morning. He's really good at putting on a front in front of other people and not complaining. I think he feels bad so much and I try to carry on with life as much as possible he just has to go with the flow.

We left the church later than I had planned so we went straight to my doctor's appointment.
I've been seeing this dermatologist about every 2 weeks since April. My skin is flared up and driving me crazy. I've pretty much been on Predinose over and over all summer since April.
The Predinose helps, but as soon as I finish it I'm a mess again. He has also tried me on many many other meds that have not done anything. Only the Predisone has helped.

I have Firbormyalgia so he thinks it's affecting my skin and my nerve endings are flared up. I have no idea what to think, I just know I can't live like this. It has been horrible and painful. I hurt all over, my skin, my muscles and my joints. It's all I can do to keep from busting out in tears! So he put me on Neurontin 600 mg a day and Xyzal at bedtime, plus I got a shot in the office. I sure hope this helps!!!

We got a bite to eat, went to Target, got my prescriptions and headed home. I had took the first part of my meds as soon as we left Target so when we got home I got my shower and went to bed.

I woke up around 8:30 PM. Elijah was asleep on the futon since his bed didn't have sheets. Around 12 Jody went to bed and Elijah woke up shortly after and was mad because he was asleep when Jody got home and didn't wake up until after he went to bed so he missed seeing his dad. Dakota had went to bed around 12, he was pretty tired. Elijah and I stayed up until 3 AM, we enjoyed being the only ones up and had some snuggle time.

I took the rest of my meds before I went to bed. This morning I woke up at 9 in a groggy fog. I have been so groggy all day long. Plus my vision is all blurred today. I even took a 3 hour nap and missed Elijah's return appointment. There was no way I was getting behind the wheel and putting my kids in the van with me and I didn't feel alert enough for Dakota to drive. I'll just have to reschedule his appointment, it is just to release him from this doctor.

Saying all this to ask for prayer that these new meds will work for me. I'm sure the groggy feeling will pass after I get used to taking them. Also pray that Elijah will be able to start taking in more formula. I think he is back to his reguar self now, good days and bad days. I'd like to see more good days than bad.
Thanks for the prayers.