What A Great Book!

I wanted to share a little bit about a book I just finished reading. It was great and had so much information about Adrenal Fatigue. It is called 'Adrenal Fatigue, The 21st Century Stress Syndrome' by James L. Wilson. It was on the recommended list I received from my physician that compounds my hormones. She did a saliva test to see what all my levels were about a year ago and found out that my adrenal glands are barely working. I have a textbook case of Adrenal Insufficiency and I have been supplementing with an adrenal cortex supplement. It gives useful and practical advice on lowering stress, eating better, supplements and more. I really enjoyed reading it and will keep it in my personal library for reference!

For some reason yesterday I could not get going! I felt better pain wise but just didn't have the energy. Come dinner time I was rolling though! I worked through dinner and got some much needed packing, sorting and picking up done in my bedroom. That room seems to be the catch all for everything we don't know where to put! Since I spend a lot of time in there when I am down I thought I would try and make it a little less stressful. Seeing all the things that I should be doing when I am not feeling well sometimes just makes me feel more guilty!

The girls and I are getting out of the house today! We are going to treat ourselves to lunch and possibly an hour at the park. We will see if the weather holds out and if I am feeling up to it. So far my pain level is tolerable today, just a little achy in places :)

I just received information for the Walk For Lupus that they are holding in Nashville, TN in September. I would love to participate this year if I am able. I am going to talk to my DH about taking the camper over for the weekend. They have a 1,2,& 3 mile walk to help raise money for the Lupus Foundation of America. I tried to get a team together last year or the year before, cannot remember lol, but I was not able to make it. I figure I can either walk or wheel at least the 1 mile. So I am going to start my fundraising website and my goal is at least $100. We have to come up with a name and I would like to get some t-shirts done. Sounds like fun while raising money for a cure!

I Should Be A Weather Person!

As many people with arthritis, Lupus, Fibro or any other ailments that deal with joint pain may know, my body can tell me when a storm front is coming in! I was down yesterday with aches from head to toe! Even the pain medication just took the edge off to where I didn't curl up in a ball and cry. I was very irritable, tired and whiny....sorry DH and kids! It is so hard to be "sick" sometimes when it's just the kids and I. The older one pretty much understands, the 10yr old is in a world of her own and the 5yr old is sweet one moment and ornery the next! She made me a sweet "get well card" then yelled that she was hungry and wanted lunch. Oh my aching body!

So today is raining and stormy...haha! I am feeling a little better from yesterday. I was up about 7:30am and got to wake up slowly without the kiddo's demanding things right away. I finally got my Plaquenil refilled, due to waiting on doctor to refill, and have started back up with my vitamin regimen. I always feel better when I am taking them...they get expensive and at times I have not refilled out of guilt. A family of 5 runs out of $ quickly these days and sometimes I don't include the vitamins in with my medication budget. Even with insurance I am still paying a lot out of pocket each month. Since I don't eat well all the time, they are great to help me get all the vitamins, minerals and herbs I need. Currently I have restarted taking a super multi-vitamin, adrenal cortex supplement, calcium w/ vit D, vitamin C & glucosamine. These were all recommended by my natural hormone replacement doctor. There are several more I have tried and liked, but these are the bare essentials I take, when there is extra $ I try and take a few more. I am lucky and get them at physician cost since I am a licensed nurse, without that discount there is no way I could afford them. The brand I use is medically tested for accuracy of ingredients and have no fillers and are easily digestible...thank goodness!

My plans today are to get out of the house! Sometimes I have to just get out...anywhere! I am going to one of my favorite craft stores to pick up some fabric to line some crochet purses I have been making. Crocheting is my hobby, along with photography & digital scrap booking. Two of the three hobbies are easy to do if I have to stay in bed! I even have a handy dandy laptop desk! Well, kids are ready to go...guess they need out of the house too. Until later!

Conflicted Emotions

So, I have been an LPN for 10 years now and have loved being a nurse. I have worked in hospitals, nursing homes, doctor offices and in the schools. Each job had it's pro's and con's, as most jobs do, but I can honestly say I have truly enjoyed all of them as each job was at a different time in my nursing career. Right at this moment I am not working due to the Lupus. It has been extremely hard coming to reality that I may never work as a nurse in the capacity that I have before in my career.

As a nurse you have lots of stress, emotional & physical. There is many hours of standing, walking and lifting as a hospital or nursing home nurse. Many times I had to turn 300+lb patients, help them walk steadily, lift them up and out of bed and so forth. Thankfully this all happened early in my career, pre-lupus years. I know that there is no way I could be a hospital/nursing home nurse at this point in my disease. I had always prided myself in my abilities to perform needed skills and have often missed not working in a hospital setting.

Working as a pediatric nurse in an office setting was another challenge. I didn't have to do all the skills needed in the hospital setting, but there were many other skills I had to work on. Being able to take care of the patient (child) as well as the parent. As a parent I know all to well that taking your child to the doctor can be a scary experience. Your child is afraid of what may happen to them and you (parent) feel guilty when they have to get needed procedures which may hurt. I have helped many a crying parent when their child has experienced the pain of stitches, shots, broken limbs, etc. You are nursing the entire family. Physically I was able to do fairly well at this job. There were many hours of being on my feet, but I was able to take short breaks and rest. The hardest part was when we would get the pre-k children in and I would have to wrestle with them to give them their shots! Gosh those little one's could kick hard and pack a punch! The other issue was the early morning hours 5-6 days a week. That is very hard on a Lupie!

My experience as a school nurse has been positive. I absolutely LOVED my job. I felt honored to be able to help the children, families & community. Physically this job was the least demanding on my body. I had my own office and was able to sit, stand or walk as much as I needed to. Many a mornings I was still able to function while in a flare. The hardest part of this kind of nursing for me was the emotional stress. I became to love many of the children and their families. The stress came in when I had to work with children that were being neglected and abused. There were many children that I wanted to take home with me and feed them a good meal, give them a good bath, and new clothes. Not to say that all the children were like this, just many. I worked in a very rural community that has high poverty rates. Like my previous job, I had to work 5 days a week but for only 5 hours a day. My hours were 9:30-2:30, a perfect schedule for a Lupie with children still in schools. When they were out, I was out too. For 3 years I was a school nurse and I truly feel like this is where God wanted me to be.

Today, I am a stay-at-home mom to 3 beautiful girls. I am sitting in bed with my laptop as I am in a flare. I have had a wonderful experience working as a nurse in all areas of nursing. I am not ready to give up my license that I have worked so hard for. I get tears in my eyes and anxiety just thinking that I may never nurse again. Coming to the conclusion that my nursing career may be ending has been hard. I spoke to a fellow nurse and friend last night about her new position and my heart started beating faster and the excitement of talking to her about nursing procedures kept me up most of the night. I miss it, but in all of my years of nursing and in all of the different areas of nursing I worked in there was a common factor....helping people & educating them about their health. I may not be able to start an IV, open medication packets, lift & turn patients or pull a 12 hour shift on my feet, but I can hold the hand of a dying patient, hug a scared family member, educate a new mother about her baby or make sure that everyone I come across knows about Lupus, it's symptoms, treatments and hopefully soon, steps to a cure!I know God has a plan for me...may He guide me and be with me on this new journey in my life!

Time To Share!

I wanted to share this digital scrap book page that I did with a kit I made a few years ago. It was called "Wings of Hope" and I did it for Lupus/Fibro Awareness. It is a pic of my Mom and I a few years ago on Mother's day. She has had Fibro, Chronic Fatigue and a list of other problems for years. I have SLE and Fibro with a few more things. We have a few other members of our family that have other autoimmune disorders.....guess it must run in our family! Just thought I would post it, good memories!

Just Another Day In Lupie Land!

Well, as you can tell by the time stamp on this post it is early in the am on Saturday. I am still up since I didn't make it into bed by 10pm. It is so weird, I can sleep anytime during the day, all I have to do is sit still for a moment and I am out. Yet, I have such difficulty sleeping in the evening.

So, my family is in bed and my DH has recently put Netflix on our Wii, so I start flipping through movies. I came across this one in the "Emotional Drama based on a real life" section. Sounds like a good chick flick to me! So I pick this one called, 'What Makes A Family'. Seems to be off of the "B" list since I have never heard of it before. It has Dean McDermott (yum), Brooke Shields & Whoopi Goldberg in it. It's from 2001, so not too far back. So I start watching it and realize about 15 min into the movie it is about "alternative lifestyles". Well, okay I really don't have an opinion on that, other than it's not right for me.....so anyway, Brooke Shields character's partner comes down sick after delivering their baby. You will never guess what it was! LUPUS!!! Holy smokes! So of course I have to finish the movie! At first I was excited to see it played out on TV, than I was mad because it almost seemed exaggerated a bit. The next emotion was worry, sadness...hoping that my disease would not progress as hers did. It showed how she was trying to come to terms with not only the disease, but the medications & their effects, financial strain, relationship strain and some of the problems I have everyday with parenting a small child while having Lupus. Bravo! I hope to see more in future about this disease, maybe than we can get some more funding for research for a cure!

So today was pretty quiet for this Lupie. I got up early this morning before everyone else and had some toast and read for a little bit before the little ones got up. It was nice, but only lasted about 10 minutes! The girls and I stayed inside today as it was HOT and HUMID...not good for me. My DH came home and we (he loaded I supervised) loaded things up for a garage sale in the morning at my Mom's house. Luckily my DH understands that 7am and sun doesn't work well for me, so he is going to be a dear and do the garage sale with the kiddo's. I am going to get some much needed rest :)

I have been reading a great book on Adrenal Fatigue and in the book it has many great suggestions for not only supplements, which I take and highly recommend, but it also talks about certain foods to avoid and include in your diet. So, I AM ADDICTED TO DIET PEPSI....there I said it! My cells float in Diet Pepsi/Coke, I am not too picky as long as it has ice and it's cold! I have never been much of a water drinker, so I wake up and grab a soda and drink it all day long. I have recently switched to no caffeine, hoping to help with my sleeping problem! Unfortunately cutting out the caffeine so quickly I have been dealing with a horrible headache. Ice packs seem to help a little :)

We got the news that we will be moving at the end of the month....days before we leave for the beach! I hear a flare coming on! I am going to try and pace myself and except help getting this house packed and ready for the guys to move. Before Lupus started dictating most of my life, I used to be able to pack up a house and have it all organized in a day, no I did not grow up in the military, just picky! I know I will have to not be such a control freak, just sit back and pray nothing gets left or broken. Oh well, they are just things!

Oh, the local SS office called today and asked a few more questions. He said that my application was very thorough and that he would be sending it to the "decision makers" today. I am not going to get too excited, I am almost expecting to be turned down, most people do. I have spoken with a great attorney before I even filed and he said to just file and if they turn me down to come on in and we will compile a case. I so dislike this....trying to have a Lupie remember dates, times, all these things just make me more confused...help I am lost in a Lupie fog!

Well it's time for this Lupie to try to get some sleep. Not much done today, just another day but I am alive and surviving!

Oh Aches & Pains, Please Go Away!

This morning I had intentions to go to the local SS office to start my process of filing for disability. But my body did not cooperate! So I shut the 8am alarm off and was awoken by my sweet DD#3 at 9am wanting breakfast. Thank goodness for the DD#1 as she was able to get her something while I started the morning ritual of snap, crackle popping my way to the restroom and kitchen to start taking my morning meds.

Thankfully I found that you can file for disability online, so 3 hours later I finally had a receipt of submission. Whew! After a rest, I got up and got dressed. This is something I have promised myself to do everyday, unless it is a bedridden day. For some reason it always makes me feel a little better if I am able to at least answer the door should someone come knocking, lol! My Mom decided to come pick up DD#1 for some quality time, so after she left I decided to treat DD#2 & DD#3 to some lunch and McDee's. They love it and it was close to the SS office that I had to drop off forms to. Luckily it only took about 20 minutes to wait and get the forms turned into them, so step one of filing the first time is done!

After lunch I was feeling pretty achy again, so I decided to head to the bed with my laptop and check out some Lupus blogs/websites to catch up on any new news. I was trying to find a blog to follow that talked about dealing with small children when you have a chronic illness/pain. I have to be honest, after about 15 I gave up and decided to start my own. So, I may not have all the answers, but maybe just maybe someone will find something in my life that they can use to help theirs. I am also hoping that it will work as a place to write down and keep track of my thoughts and feelings regarding this disease. I try not to overload the DH when he comes home from work. It always seems like I have a pain here, or complaint there and I know he must tire of hearing it. So maybe just writing it down and getting it out may help. I am blessed with a DH that has been pretty understanding here lately and with a child that helps whenever she can. It has not always been that way, but here lately they have been exceptional!

My last day of work at the school was May 21st. I am now unemployed....hmmm heart races just a little faster when I read that. I am extremely lucky in that my DH makes enough $ for us to survive. My income was used mainly for spending $ and extra's. So it's been 11 days since my last day and I have only been out of the house for the 5 of those days. The weather has been pretty hot and humid here in the South and so I try to stay in more. We have a family beach trip planned for 4 weeks from now, not exactly the perfect Lupie vacation, but I am bound and determined to get my DD3 to the beach! She has never been and I am sure with lots of planning, sunscreen, shade and sun clothing I can hopefully make it the whole week. My Mom has fibro and has been disabled for many years and understands completely about the need for rest, so I am sure with her and my DH I will be able to get the afternoon rest time that I need. We are also looking to move to another house in about 2 weeks if all the paperwork goes well. This is super scary to me. We have about 1/4 of the house packed! I may have to call in the friends to help get everything packed and ready for moving day. Oh I can see many bed days in my future!

New Life, New Beginning

Ok, so I am starting this new blog so I can share my trials of living with Lupus and Fibromyalgia. I am a mother of 3 girls ages 15yr, 10yr & 5yr. I have been married to my DH for 17yrs this July. I was diagnosed with SLE April 2004 and Fibro in the fall of 2009. Until recently I had been working part-time as a school nurse in our community. I have been a nurse for 10 years and have just starting taking the first steps of filing for SS Disability.

I am currently on Plaquenil, Flexeril, Cymbalta, Synthroid, Adrenal Supplement, Calcium + VitD, Vitamin C, Mega Dose of Multi-vitamin, Asprin, natural hormones and Lorcet for pain. At my last blood draw I had a negative ANA, but suffer from many of the typical Lupus symptoms,therefore I have been given the formal diagnosis of SLE. The main symptoms I have are joint pain, fatigue, sun sensitivity, swelling, mouth & nose sores and facial rash.

So, this is my place in cyberspace to share about my life....welcome!

Lupus Poem

Another great piece from Butyoudontlooksick.com!

“But you Don’t Look Sick”
Is an often heard phrase
To those battling illness
Invisible most days…

Having an Invisible Illness
Makes life so much worse.
As we are prejudged, misunderstood,
Not believed, and/or cursed…

What we experience each day,
Fatigue, symptoms and pain,
Is really life altering,
And a huge, great big drain…

Doctors, prescriptions and treatments,
Are now part of our life,
Costing more than we have,
And causing trouble and strife…

Because we are “Normal” to look at,
At least most of the time,
People think it’s Ok to treat us badly,
Or like we have committed a crime….

But the only crime we committed,
Was to get invisibly sick,
It just something that happened,
It’s not our fault we feel Ick…

We didn’t ask to be ill,
It wasn’t something we did
Not something we didn’t do,
We couldn’t have hid…

It’s just something that happened,
A totally random affair.
I am trying my hardest to treat it,
Of this I do swear…

But now you must realise,
That there is rarely a cure,
But we try what is recommended,
But each day there a fewer…

Please don’t recommend
Any remedies and/or cures
If it worked then we’d know
Of this our doctors ensures…

Please don’t think ‘cos I’m smiling,
That I am healthy and well,
It just means that I’m happy,
I can still be very unwell…

Happiness is just that,
A feeling of joy,
When you suffer long term,
You work hard to enjoy…

Don’t tell me you understand or know what it’s like,
Don’t pity me or exclude me,
I know what my limitations are,
Please try to understand, that is my plea

So Please we all beg you,
Don’t Judge us by looks,
But understand us and help us,
Don’t treat us like Crooks…


© 2008 butyoudontlooksick.com

The Spoon Theory

I have never found a better way to explain the fatigue associated with Lupus. So I have decided to share the Spoon Theory by Christine Miserandino, posted on But You Don't Look Sick.com. It is a little lengthy, but so worth the time!

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!