oct 29, 2012

sorry i havent been on in a while a lot has happened. in june we found out that we were expecting baby number 2, we were very excited and ready for another baby. my fibro was pretty bad this time and i had to quite working and start physical therapy for my back and hip pain and it was slowly helping. on oct 12th we went in for a routine ultra sound at 20 weeks so measure baby and find out the sex. the few days prior i just had an uneasy feeling like something was wrong but i figured i was worrying for no reason, as i worry a lot anyway. the ultra sound tech started the ultra sound and the measurements. after only measuring the head and arms she whipped off my belly and excused herself to go talk to the dr. at that point i knew that my horrible feeling that something was wrong was true. she then cam back into the room and escorted us to a different exam room where we waited for what seemed like forever for the dr to come in. i could tell by the way he was carrying himself when he came in that something was wrong. he proceeded to tell us that the baby had no heart beat and was only measuring 15-16 weeks. i had been in since that point in my pregnancy so i was so confused because we heard a heart beat at the last appointment. he just wasnt growing. i went back in later that afternoon for them to insert dried seaweed into my cervix to help start it to soften, at 8 am sat the 13th i was induced. i went through labor all day and all night and had our baby at 5:42 am sunday the 14th. it was a boy, Connor Allen McClung. i didnt get an epidural like the dr and nurses kept trying to make me get and it was the longest night of my life. i have never felt so much pain to have such a terrible end. out little angel with be buried with my dad and my grandpa. i cant even explain the emotions that i have been feeling. there are so many people in my life right now that are having babies and its hard for me to be happy for them. i held my son for a few seconds but couldnt bare to any longer. he weighed 5.25 ounces and was 6 inches long. my husband couldnt even look at him. we are dealing with this in two very different ways but i know thats ok. our son Liam has been such a blessing to have during this hard time, he is keeping us strong. i think that this has made our relationship closer in a lot of ways, ways i dont know. i just wanted to share this with those of you who do follow my blog. its a huge part of my life now. 

IBS

In one study, 32% of people with IBS also had fibromyalgia symptoms, compared with 4% of people without IBS. Another study showed fibromyalgia occurring in 20% of people with IBS. And studies have estimated 32% to 70% of people with fibromyalgia also meet criteria for IBS. Both are functional disorders. There isn’t anything wrong with the structure of the organs, but with how they work.(http://www.webmd.com/fibromyalgia/features/fibromyalgia-and-irritable_bowel-syndrome) Ibs or ibs like symptoms are embarrassing but very real! I have had these sypmtoms all my life but they have recently gotten worse. Diet if a big factor, I've hit a road block in my diet and excersice due to back pain, I have kind of given up. I need to get back on track and eat healthy again it will be much easier once we move home and there are more healthy options like fresh produce and more whole, raw foods.


 Here are 2 links that have some home remedies for ibs I hope they help! http://health.howstuffworks.com/wellness/natural-medicine/home-remedies/home-remedies-for-irritable-bowel-syndrome.htm
http://www.home-remedies-for-you.com/remedy/Irritable-Bowel-Syndrome-(IBS).html

Scentsy

I am soooo excited I am officially a scentsy consultant!! I love the products and it is something that I can do to make a little money to help contribute and it isnt a lot of physical work that will be too hard to handle between my 7 months old and my fibro. My fibro has been really bad lately and there is no way I could wake up in the mornings and get ready and go to a full time job. I can barely take care of my house and my son through out the day. I am really hoping that this will be both fun and help with a little extra money :)

PLEASE WATCH THIS!

http://www.youtube.com/watch?v=hTxxjh_7bx4&feature=player_embedded

Realization

So my breast reduction got denied for the third time because my husband is getting out of the marine corp next month and they dont want to pay for it. I am sad and mad and frustrated! I have come to realize that it isnt gonna happen unless we pay for it even though I have 8 years of documentation and 4 different doctors saying I need it. My back will continue to hurt :( I have been in so much pain lately I cant keep up on my house work and its getting hard to hold my 6 month old son because he weighs almost 20 pounds. I have been trying to loose weight but its very hard when the only exercise I can do is walking, I'm not gonna get very far with only being able to walk. Its a viscous circle I hurt cause i have 10 pounds to loose but there isnt much I can do about it because of the pain. I have had a kink in my neck for days and I cant even turn it to the right. Having my son has defiantly made my fibro worse but i would not change anything! He is amazing and I love him so much if I could go back in time I would still have him!!

Update :)

So sleep has not gotten any better. I have to take an ambien to sleep at all or stay asleep at all. all of my joints hurt so bad I can barely do anything, I cannot take any pain medication just in case my breast reduction gets approved. The pain killers mixed with my zoloft cause excess bleeding so because of the high risk during surgery I cant take anything so I have been miserable the past week or so. I ordered some glucosamine chindroitin with msm today so hopefully it will help! I really hope that once we move and get settled in my body will start to feel a little better, I dont know how much longer I can handle this. I can hardly even hold my son.

Fed Up With Fibro

Here is the key chain that im making to help raise money for fed up with fibro organization

 

I made these bracelet for Fed Up With Fibro organization to raise money. They will be $10 you can visit my page Carris Creations to see them along with the other stuff that I make. The link is on the side of my blog under my profile description :)

Household Chores

So today I had family come and visit so I wanted to have a clean house. I try to keep a clean house because it is hard for me to clean it all at once so I have to do room by room. Well today I needed to do the living room and kitchen. My husband is great and helped but I wanted to let you all know how I have to clean......

First I did the dishes and my hubby swept for me, I then had to rest because my back was in massive pain. I then had to take a break and rest my back. Once I rested for a little while I cleaned the living room, vacuumed and cleaned off the tables, I then had to rest again before mopping. At that point I was in too much pain to even walk so I had to take two pain pills and rest before I tired to go shower. I took a long hot shower to try and relax my muscles, it will probably take two days to re-coop.

I still need to clean my upstairs but since no one else can see it it can wait :)

Home Remedies

PLEASE FILL FREE TO SHARE ANY HOME REMEDIES THAT HAS WORKED FOR YOU

One of my very best friends is my heating pad :) I sleep with it at night, some nights I cannot fall asleep without it. Warm baths also help a lot to relax your sore muscles. Quinine is a muscle relaxant that is naturally found in tonic water, I mix it with cranberry juice so I dont have to drink it on its own cause Im not a fan. Melatonin is another natural thing you can take, it helps with sleep. Melatonin is what the body naturally produces to help you feel tired and fall asleep but people with fibro, and chronic fatigue produce less of this and that is one of the causes of the sleep/drowsiness. I encourage a good healthy balanced diet with small amounts to no gluten and no artificial sweeteners. Exercise is also very important, but only what you can physically handle. Start slow and work your way up to where you want to be, it is possible!!! I was able to get up to being able to do zumba five days a week and I felt amazing but I did not get there over night it did take a little time. There are a ton of different diets you can try and see if it helps with any of your symptoms. See the educational links portion to find a few links to where you can find diet and exercise info.

Sleep Deprived

So I already have an opportunity to give you a little insight on one of the many problems we who have fibro face. The lack of ability to fall asleep, sometimes it doesnt matter how exhausted you are you just cannot fall asleep. Last night was one of those nights for me. I was so tired in every way last night from having a busy day but no matter how much I wanted to or tried to I could not fall asleep until after 5 this morning. It is now 7am and my son is awake. I cannot go to sleep because my husband has duty and wont be off work until tomorrow afternoon. When I dont get enough sleep my pain level increase drastically. My arms and legs feel like jello and have an aching pain that is so uncomfortable its almost unbearable, I feel like I cant move at all. This is all paired with a headache. My son takes president over anything so I have to ignore how miserable my body feels and take care of my wonderful son.

• It is 4/23 and its 3:26 am and I cannot sleep!!!! I have a consultation for a breast reduction tomorrow and I have a lot on my mind so I think thats why i cannot fall asleep. I am exhausted but i just toss and turn. My body is hurting so bad I feel like I cant even move my legs. My hand and fingers hurt so bad I can hardly type or even make a fist. 

The "Spoon" Theory

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".
© 2003 by Christine Miserandino Butyoudontlooksick.com
Please note that this story is copyrighted and should not be reprinted in any form without permission from the author. Feel free link to “The Spoon Theory” at www.butyoudontlooksick.com/the_spoon_theory - Thank you!

Fibromyalgia Awareness Day

                         So coming up Fibromyalgia awareness day!! May 12th, please show support :)

Getting Started!

So this is my first post :) this will be a learning curve. I want to help people understand a little more of what it is like being a stay at home mom with fibromyalgia. In no way is it easy, I know there is a lot of you who dont think fibro is real or that its all in my head. With this blog I am hoping to help you all understand a little of what my day is like and a day in the shoes of someone with similar struggles. Trying to juggle being a mom, wife, and working is not as easy for me then it is for a lot of you. I am in pain everyday, sometimes it is debilitating and sometimes I can push through like nothing is wrong. I may look like I feel fine but I have gotten really good at hiding things. This blog is not so that I can get attention or sympathy from people I just want to help people understand a syndrome that is not very understood.