“Tomorrow is a special day to honor moms, but also a painful day for those who’ve lost moms or children. Let’s be sensitive to each other!”

For some, this may be mistaken as a downer of a message, however this rings all too true in the chronically ill community. It is unfortunate that so many of us have experienced heartache on top of the daily physical pain and suffering we endure from our illness. This tweet from an amazing women who I follow on Twitter was very humbling. The community of the chronically ill are an amazing bunch and we all look out for each other as best as we can.

I know of many women who have tried to conceive and are unable to due to their medical conditions. Other women cannot even try for it would be too difficult for their body to handle pregnancy. There are women who have been successful in conceiving and have miscarried their child.

I, myself had a very scary pregnancy due to complications from lupus and lupus nephritis. I gave birth to a 28 week old, 1 pound 12 ounce daughter who was only half baked in the oven. I am one of the lucky ones (I prefer to use the word blessed) who was able to give birth, survive and have my child survive. She is now almost 6 years old, healthy, and 40 pounds soaking wet.

I did not give birth to my oldest daughter. She is my husband’s daughter from a previous relationship and her mother is barely in the picture. Despite not giving birth to my oldest daughter, she is in every other sense of the word, my daughter. Giving birth does not make you a mother. Raising a child and giving them your unconditional love, providing for them the best you can despite all odds, and simply being there for that child is what makes you a mother.

Pets are a part of families. I think just about everyone reading this who has a pet would agree. I know many women who have pets. They affectionately refer to them as furbabies. I have a furbaby as well and agree, a mom is a mom is a mom. Moms of furbabies are amazing women as well. I must say, their furbabies are very spoiled and well taken care of… they are their children.

I hope that all of the mothers out there have an amazing Mother’s Day this year. No matter what kind of mother you are…a birth mother, a step mother, a foster mother, a mother of a furbaby, or a mother of an angel child… may you have a blessed Mother’s Day filled with love and fond memories. A mom is a mom is a mom, no matter how from.

Related:
Birth of a Lupus Mom

Sometimes its tough to get through the day
Because of how I feel,
But I try my hardest to take it all in stride.
Get off my butt, join the world,
And enjoy life’s crazy ride.

My children, my husband, my family,
Without them I would hide,
But God gives me the strength every day
And whispers in my ear….
I will never ever leave you my dear.

So here I am,
Loving Him,
Embracing His presence.
Despite my illnesses He reminds me that
Life is not meant to be easy.

I brace myself, get out of bed,
For I have so many blessings.
A roof over my head, water, electricity,
People to help comfort me.

I’m a mommy and a wife,
A sister, a daughter, a friend,
And if I weren’t dealt this hand in life,
I would not appreciate as much.
For these cards I’m playing day in and out
Have showed me God’s true light.

I’m not alone,
For God is with me.
The blessings he supplies
Are appreciated so much.
My family is my life.

*Poetry is not something I write, but I attempt =)

I am a very dorky and quirky person.  There is nothing wrong with that statement!  I’m definitely unique!  It has been said before by some that everyone has a twin floating around somewhere in this world.  If I do indeed have a twin, I want to meet her!

First lets get the not so fun medical information out of the way.  I first became sick at the age of 17 years old and the dreams I had for my future were gone.  I have since worked around my illnesses and made new dreams.  I have SLE Lupus, Membranous Glomerulonephritis due to Lupus, Tumid Lupus (rare skin form of Lupus), Fibromyalgia, Depression, Narcolepsy, and Differential Connective Tissue Disease the unknown due to sub-illnesses that are not quite fitting together like a puzzle.  I stump doctors on a regular basis with my non-traditional blood work.  My body thrives on being difficult, but I’m blessed to have doctors that love a challenge.

I am a mother of a micro preemie that was born at 28 weeks, weighing 1 lb 12 oz and 13 inches long.  Because I believe that love and God can provide more strength than anything else, I practically lived in the NICU for 55 days, visiting my miracle, Alexi (meaning defender of mankind).

I am a mother of another daughter that I met when she was 4 years old.  She is my step-daughter Arianna, who has stolen my heart.  She is my second miracle daughter, as my tubes were tied 5 months after Lexi was born.

I am the ex wife of Lexi’s father.  We went through so many battles through the court system.  I thought that I would never be able to forgive him for all of the empty promises given to me during our marriage and the endless backstabbing that occurred during our divorce and custody battle.  I was wrong.  God provides for us as long as we put our faith into Him.  Lexi’s father and I are not only on speaking terms, we are a team in raising our daughter.

I am Brent’s wife, who is Arianna’s father.  We are going through a rough time in our marriage due to financial, communication and health reasons.  We have just finally sought out counseling through our church, and we WILL make this marriage work.  Why do I believe this?  Because we BOTH have the strength through God to pull through, we have not lost that love for each other, and we are working TOGETHER as a team to keep our marriage alive and eventually it will revive itself back to what it was that brought us together in the first place.

I am a person who loves to cook.  Someone please give me a huge kitchen and fill it with every spice, meat, vegetarian alternative, and vegetable you can think of.  I will make your belly come crawling back for more food.  You will never want to leave!

I love to use my imagination (as crazy as it may get at times) and come up with new arts and  crafts projects.  I love making homemade gifts.  I put all of my effort into each and every single gift that I give and get great joy out of others appreciating my creations.

I love nature.  I am not allowed to go into the sun anymore, which is a major bummer.  I grew up camping, nature hikes, bringing home random animals who needed a little TLC before being released back into the wild, and at times we would be running a zoo in our house with all of the animals we bought from the pet store.

I have taste buds that have a mind of their own.  I crave vinegar infused with pomegranite (and drink it as if it were juice), beets, onions, seaweed, anything with wasabi, jalapenos, sauerkraut, any kind of cheese, and tomatoes on a regular basis.  My favorite drink is ice with a splash of water (yes, you read that right).  I cannot live without coffee, and if V8 weren’t so expensive, I would always have it on hand.  Desserts are something I could go without unless I am pms’ing.  When it is that time of the month, there is no telling what kind of dessert I would choose.  One day I love chocolate, the next day it makes me gag.  The one dessert that never fails to satisfy me is a cannoli (or 2, or 5).

I am stubborn.  If I believe that I am right, I will defend myself to the bitter end.  When it comes to my health, I get frustrated to have others who have not experienced my issues and do not have any knowledge other than what they have researched on the internet tell me what they believe is right for me.  I have an excellent team of doctors and nurses who get paid to monitor my health and make the needed adjustments needed.  I do not need anyone with a degree in internet research to come up with their own conclusions as to what my health plan should be.  The reason I say this is that, although my loved ones who are guilty of this are only looking out for my best interest, they are subconsciously picking and choosing what they want to believe is the truth.  Suggestions of questions to ask my doctor are greatly appreciated.  I will never turn anyone down who asks to go to my doctor appointment with me either.  Just do not tell me what is best for me unless you have my chart in your hand and have thoroughly researched it and most importantly understand every aspect of my health.

The most important thing in my life is God, family, and to love and to be loved.  And most importantly, I live for hugs.

Now, that is who I am…. I can go on and on forever, but I tried to touch on the most important subjects and given my amount of brain fog I am experiencing, I am going to have to leave it at that =)  Yep, I’m quirky, dorky Melissa and that’s how I like to be!

No bread? No problem!  I’ve got enough yeast to last a lifetime.  I’ll just make my own bread.  I have perfected honey mustard sauce, and now must have it on hand at all times as everyone likes to dip everything in it.  I make my own salad dressings and  vinegarettes.  I make my own bbq sauce, tomato sauces, sweet and sour sauces and more.  I come up with sauces that who knows what to name them, but they are good.

Lately, I’ve been trying to perfect creamy potato soup and creamy broccoli soup.  I have finally perfected the creamy potato soup and it is scrumdiddlyumptious!  I’m thinking that the broccoli soup needs the same base as the potato soup, with a few minor tweaks.

I can cook just about any meat to perfection and I am a vegetarian.  I go by my sniffer, which has yet to let anyone down, with the exception of about 3 occasions.  When it comes to making taco seasoning, no worries!  I can make that too.  I cannot stress enough how much I LOVE to cook!

2.  I am happiest being around my daughters.  See its a catch 22.  I’m a parent, so obviously, I have moments of frustration, but they mean the world to me.  They are quirky just like my husband and I and say the funniest things ever!  Lexi is 4 years old, so she is at the stage where she either asks off the wall questions, twists words around to make sense of them to herself, and always asks why things are what they are.  Arianna is 7 years old and still says her cute and funny sayings, but the sayings she says are without a doubt in her head 100% correct.

Here are some of the many quotes from the girls:

Lexi:  “Mommy, why is your dad so old?” Me: “He’s your grandpa.” Lexi: “But he’s YOUR dad.” Me: “Why don’t you go ask him why he’s so old?”

Lexi to Arianna:  “Hurry up, get under the covers!  It’s raining men!”

Lexi:  “Why can’t I go to the moon right now?  It’s not fair.”

Lexi:  “Grandma, why did you give me half of your biscuit?” My mom, “Why do you think I did?” Lexi: “Because you’re a fool?”

My dad said, “Okay, I’m going to take off now.” Lexi said in a sad voice, “I don’t know how to do that.  I only know how to take off in a plane.  That’s not fair!”

Arianna:  “Mommy, I want Tori to sleep over our house because our house is embarrassing!”

Lexi:  “I really hope he feels better soon.”  My mom, “Who do you hope feels better?” Lexi in an agitated tone, “Obama!” My mom, “Why?” Lexi, “Because he’s lazy and is always on his knees and doesn’t help the people.”  My mom, “What people?”  Lexi, “The people of our country Grandma!!”

Arianna: “Daddy, can you play deck the halls and feel so jolly?”

Lexi talking to my boobs: “Hey boobies, wanna go to a concert?” …. seriously she says this ALL THE TIME!

Lexi on bathroom issues:  ” Mommy, is my hiney clean as a baby farm?”

Lexi’s pj tee had an owl on it. She said”Arianna u like my hooter? Its an owl but we call it a hooter.”Arianna said”I really like ur hooters.”

Arianna to Lexi, “Get on m fever train!”

How can their innocence and silliness not brighten even the gloomiest of days?  My girls just crack me up and make me smile from ear to ear each and every single day!

3.  I am happiest when I am doing crafts.  Whether it be sewing, painting, creating projects for the girls, or making gifts, I am in my glory.  Give me a table to lay out my crafts, and you have one happy woman here!  I thrive on being able to be creative!

Come Christmas and birthdays, the wheels are turning, and I am always able to come up with unique gift ideas that are hand crafted.  I believe that a hand crafted gift is the best gift a person could get, as it is a gift from the heart.

4.  I am happiest when I am bargain shopping.  There is no greater feeling than the art of saving money!  Whether it be grocery shopping or shopping for gifts, I get so excited to see the bottom of my receipt say how much money I have saved,.  A penny saved is a penny earned.

5.  Last but definitely not least, I am the absolute happiest person in the world when I am showed love, affection, caring and respect.  I treasure hugs and kisses, thank yous, and any form of appreciation for all of my hard work that I do to keep my family happy.

My favorite quote is, “What you are is God’s gift to you.  What you do with yourself is your gift to God.”(by Leo Buscaglia).  Life is too short to sit back and reflect on all of the negativity around you.  It is a natural human response to get angry at situations and fall into a rut at times, but given the right support from friends and family, eventually you will be able to get back to focusing on the positive aspects of your life.  Give me love and hugs, and my positivity will flourish!

Despite my best efforts to pamper myself, my body is a rebel.  I have had to cancel several regular doctor appointments lately due to lack of funds.  I have canceled my appointments with the neurologist for my narcolepsy check up, ENT for my severe sinusitis, and gynecologist for severe cramping, massive clotting, heavy bleading, and to keep an eye on my squamous cells on my cervix.  It is frustrating, but unfortunately, being sick is expensive and I have to pick and choose which appointments are most important.

There is a lot of stress in our household due to many factors.  Money is the major stress factor.  It’s such a shame that money can really ruin relationships.  I am the reason that we have no money.  I cost too much to take care of and because of me, the rest of the family cannot get anything.  Hearing those words hurt.  It is a stab in the back and a feeling of being worthless, despite best efforts to contribute as much as I possibly can to the household.

It seems like all I do and have ever done does not mean a thing because it doesn’t pay the bills.  My children are my life, and they enjoy each and every moment I share with them, but still, hurtful words can sometimes make you question your life’s value to the one who stood there and spoke those vows.  Were they just words that were said out of ritual or do they actually hold value?

Taking care of my children from the time they wake up to the time they go to bed and trying my hardest to run the household while feeling as if I have been run over by a train and then kicked repeatedly doesn’t count for anything anymore.  I have bent over backwards (in my opinion) to give my children the best life possible, but all is a waste if not all parties are willing to partake in keeping our family united no matter how many curve balls life throws at you.  At what point do you give up and say enough is enough?  Mind you, I am applying for disability.  I am not applying because I am lazy and do not want to work.  I have several doctors that back up my chronic illnesses and tell me that I am too sick to work.  They tell me that I need to take better care of myself or I will not be alive to see the age of 30.

I had dreams and I had goals for myself.  When I turned 17 I became sick and had to give up on many of them.  The one dream that remains to this day is to have a happy and healthy family life, and I am failing at that.  I have always wanted to have children, a husband who adored me and treated me the way a woman should be treated, and I always dreamed of making fond memories for my children, as my parents had done for me and my siblings.

Some of the greatest memories I have growing up did not cost my parents a dime, but rather just their love and attention.  They always made the best of every situation.  It is hard enough to suffer from multiple chronic illnesses, but to also feel like the only one to show my children how beautiful they are inside and out each and every single day and to make up excuse after excuse for the other parent is a major burden placed upon me.

I want our household to be a family.  Screw our money issues.  Honestly though, all our children will ever know if this path of destruction continues is that mommy sacrifices everything for them and always ends up becoming sick because of it.  They already feel guilty enough seeing me struggle to be as normal as possible, and for them to see me do it all on my own breaks their hearts.  This I know because they have told me.

God, please give our family the strength to pull ourselves out of this rut before it is too late for my children and for me.

I could be in a room right now surrounded by my family, everyone who I love, and right now I would still feel alone.  There are 3 people who have always been able to comfort me enough to get me out of this rut and at the moment, none of them are around.  My mom is in North Carolina visiting my brother, I think my sister is home (but I can’t call her and expect her to just drop everything and drive up here), and Lexi, who has always been my cuddle bug, is with my husband and other daughter at his dad’s house.  Those 3 people somehow just know how to lay down with me in bed, make me laugh, and give the most sincere hugs.  Its like nothing else matters… for some reason they have a gift of comforting me without even realizing it.

I desperately want my old life back.  I want to feel the way I felt before I got sick… I want to feel 16 again.  There have been so many opportunities that I had, but being sick had gotten in the way of them.  I don’t know from one day to the next how I will feel mentally or physically.  Now, add to it that my body has completely changed.  I am 65 pounds heavier than I was last year because of steroids (which have saved my kidneys), covered in pimples, have stretch marks appearing daily, sweat constantly, am so hairy, and I have moods that cannot be controlled.  No one, and I mean NO ONE, around me understands how steroids create such mood swings.  They try to, but at the same time, they just cannot understand and I am blamed as overreacting and needing to take an antidepressant.  An antidepressant will not help me.  It is not going to change what I see in the mirror, nor will taking an antidepressant suddenly make people listen to me and help me with household chores.  If that was the case, wouldn’t we all be requesting antidepressants?

How do you get over the fact that your body will never look the same again?  I just can’t comprehend the fact that I look in the mirror and my body is scarred for life.

Even if when I lose the steroid weight, the stretch marks will still be there.  The excess skin will still be there.  The scars from cysts and rashes will still be there.  I will never have my old appearance back, not even part of it.  I have been branded for life with these scars and FYI, I am not exaggerating about the extent of my stretch marks.  I already have old stretch marks covering me literally from torso to toes from going through a horrible pregnancy with Lexi.  The marks are 4 years old and have faded, but are still clearly there.  Now, I have new stretch marks from the stretching of my skin while being on steroids, and the stretch marks even hurt to the touch at times.  I have debated over having a mini tummy tuck from the excess skin that will not go away and cosmetic surgery on the stretch marks to help their appearance when I finally get off of the steroids.  The only issue with this is, what if I need to go on steroids again?  All will be a waste of money, and the same thing will happen again, not to mention, is it even safe for me to have this kind of surgery or would I be putting myself at risk for more infection?

My clothes do not fit me right, and it is very hard for me to find clothing that I am able to wear and feel pretty in due to several issues:  weight, excessive sweating, and skin pain caused by fibromyalgia.  There are many requirements when finding the perfect clothing for me, and as crazy as it sounds, you can read all about the requirements here in a past blog that I wrote.  Now that I have stretch marks covering the upper half of my left arm and starting to cover my right arm, I am desperately searching for clothing to cover these stretch marks.  I know how to do the whole make up thing, so I am covered in that department.  I am facing the fact that the pimples are just a part of me until off the steroids and I cover them up to the best of my ability.  I need to now figure out how to get rid of all of this excess hair on my arms, as I cannot stand to see them as hairy as they are.  Still, though… nothing compares to being able to have my old body back… to look in the mirror and not feel as if I am damaged.

When the house is in order and everything is clean, I do tend to feel better, but since I have been having to keep my feet up and have been having a bad bout of fibromyalgia, I have been unable to keep everything as clean as I would like it to be.  My husband, Brent, tries to keep everything clean, and does a great job, but to me it still feels dirty.  I just want a magical wand waved and to have everything dust free, put in its place, and a fresh pine sol scent.  I want the laundry washed, folded, and put away.  I want dinners to be made, and not some frozen food entree, but my dinners that I make from scratch.  I seem pretty demanding right now, but I can’t help it.  I don’t know what else will help me get out of this dark hole other than to have everything in the house the way it is when I actually feel well.  It’s a cycle… unable to do household chores, they go undone, feel worse… why doesn’t anyone hear my cries for help or for that matter, how can they not link the two together and just pick up slack?

No matter how its said, no matter how its done, I’m just not feeling well and wishing that someone would just step up to the plate and put in the extra effort to help me out as I so often try to do for everyone else.  And wish above all wishes, I want to be healthy and free of battle scars.

My daughters had a wonderful summer!  My father came over 3 days a week every single week and took the girls swimming and they have both done so well that they have, for the most part, retired their swimmies.  We have also made mini activity centers in the living room and dining area that kept them busy for hours on end (and, yes, I took their mini trampoline and had them jumping off the couch onto the trampoline!).  We have gone to several Princess Tea Parties hosted by our local Civic Center. Digging in the dirt and making dirt brownies, dirt soup, and other delicious dirt foods was a huge hit as well.  Thank goodness for McDonald’s playscape, as that has saved me on several occasions.  As I said, my daughters had a fun filled summer!

I have been slowly, but surely tapering my methylprednisolone and am now on 32mg (equivalent to 40mg prednisone).  My membranous glomerulonephritis (due to the Lupus) is FINALLY in remission…. Can I get a whoot whoot?!?  Of course, just because I am in remission with my kidneys doesn’t mean that I am out of the woods, so to speak.  I still experience the side effects of long term steroid use even as my steroids taper such as excess weight, hair growth, pimples, easy bruising, mood swings, hot flashes, thrush, stretch marks, and other side effects that I am sure I am leaving out.

With lowering steroids, my joint pain level has increased.  My rheumatologist said that this would happen, as the steroids were masking my pain.  My fibromyalgia has also been acting up more, and is mostly concentrated in my lower back, hips and thighs as far as muscle pain goes.  My skin hurts to the touch most days and I secretly wish that I lived in a nudist colony along with other steroid victims so that I wouldn’t have to wear any clothing and be comfortable with my weight as others would be dealing with the same weight issues.  Narcolepsy has gotten worse as the steroids are tapered, as I am not experiencing the bursts of energy that the larger doses of steroids provide.

Speaking of narcolepsy, I tend to fall asleep in the most random places (as most narcoleptics do).  The other day I was eating a slice of pizza and fell asleep midway through eating.  The pizza fell to the floor and the dog took the opportunity to treat herself.  I tend to fall asleep on the toilet a lot, on the porch, in church, and the latest and greatest place to fall asleep is backwards with butt up in the air hanging off of the love seat.  My husband gets a kick out of the random places that I am able to fall asleep and likes to take pictures.  It is all in good fun though, and I don’t mind.  I just laugh and shake my head.  My neurologist has also decided that I should not be driving at the moment and has revoked my license.  I am on 200mg Provigil twice a day and 5mg Ritalin twice a day.  Before tapering my steroids, these medications worked like a charm, however, since lowering my dosages, they are proving not to be enough to keep me awake and alert as they used to.  I have an appointment on September 27 to discuss my issues with my daytime sleepiness.

I am battling issues with random infections that pop up out of nowhere.  I had a cyst on my left shoulder blade that started out as a small, painful red bump.  The bump kept growing and growing until it decided to pop two weeks later.  It was the most disgusting thing ever.  I was in the girls’ room getting them ready for school when it had popped and it smelled horrid.  The girls said, “It smells like poop in here!”  I’m sniffing around, and saying, “Gross, yes it does!  Where is that coming from?”  Then I moved my upper torso and felt some slimy, thick liquid dripping down my side.

I went into the bathroom to look and my cyst had popped and a massive amount of greenish yellow fowl smelling puss was just dripping, with no end in sight.  There was that smell of poop!  My youngest daughter, Lexi, came into the bathroom and saw what was going on.  As any 4 year old would say, I guess, she said to me, “Oh mommy, you have poop coming out of your back!”  As upset, frustrated, annoyed, and grossed out as I was by the situation, she made me laugh so hard!

It has been about 3 weeks now since the cyst first popped open and it has finally healed, however it took 3 oral antibiotics and an antibiotic ointment to heal everything up.  The initial size of the hole that the open cyst caused was ½ inch deep.  I now have a semi large purple scar where the cyst was that I am sure will take ages to fade, but we’ll just call that one more battle scar I lived through.

My newest battle is massive water retention.  I have pitting edema in my feet and legs and am experiencing headaches, shortness of breath upon exertion, and on again off again tightness in my chest.  My blood pressure has gone up as well as my pulse.  We are treating this with 80mg of lasix (I normally take 40mg) and 20/25mg of benazepril/hctz.  I am on day 2 of 80mg lasix and day 1 of benazepri/hctz with a weight loss of 7 pounds.  My feet are up in the air and I am doing NOTHING!  I am resting, peeing, and praying that this all gets straightened out as soon as possible.  Of course, with lying down, I fall asleep, thanks to the narcolepsy.  Just give that narcolepsy an excuse to kick in, and it will!

So, I am sure that I have left out many things, but this basically what has been going on with me.  I’m a wreck, then I feel better, then I’m a wreck again.  It’s all a lovely pattern woven together and we just call it life with chronic illness.

From: Tjaard.Zwaagstra@philips.com
To: Tjaard.Zwaagstra@philips.com
Date: Sun, 25 Jul 2010 22:43:28 +0200
Subject: Reply by email
Reply by email

My name is Mr.Peter Tung Shun Wong.There is a sum of $44.5 Milion in my bank Hang Seng Bank, Hong Kong. There were no beneficiaries stated concerning these funds which means no one would ever come to claim it. That is why I ask that we work together.

I intend to give 50% of the total funds as compensation for your assistance.  And I shall send you the details and necessary procedures with which to make the transfer if you are interested.

Please respond quickly at : peter755wong@yahoo.com.hk

Sincerely yours,

Mr Peter T.S.Wong.

To: peter755wong@yahoo.com.hk
Subject: RE: Reply by email
Date: Wed, 28 Jul 2010 22:02:02 -0400

Good evening Mr Peter T.S.Wong!  I am super excited to hear of this news!  The only thing that bothers me is that if we use my bank account information, I should be getting a larger cut than 50%.  I have thought long and hard about your offer, and have come back with a counter offer of 80% of funds, a french poodle, and a photo of Al Roker autographed.  Please e-mail me at once and let me know if we have a deal!

Melissa
XOXOXO

P.S.- Just out of curiosity, why is only your first name American?  That’s so silly!

Yes, I have lupus and fibro fog and tend to get overwhelmed easily, but you would think that my family would see my frustration building up after the 3rd or 4th time of me asking for something to get done and just do it because I said so and because they love me and want to help me out.  NOPE.  It’s all in one ear, right out the other; lets see how long we can get away with things; pure laziness.

Case in point:  The dog has reverted to peeing and pooping in the house.  I am totally disgusted with the fact that she is doing this and am trying my hardest to keep up with all of the rules that internet sites have to offer on this topic:

1. Take the dog out every 20 minutes or so to one specific spot and stay with her.

2.  After 10 minutes bring her back in whether or not she goes to the bathroom.  If she does go to the bathroom, give her a treat immediately.

3.  Crate the dog at night and any time that you leave the house.

4.  Firmly scold the dog (but do not rub her nose in it) for any accidents she has in the house and bring soiled rags used to clean up the accident to her designated bathroom spot outside.

I am doing all of these suggestions to the best of my ability (I am home alone with my 3 year old starting at 8:00am and from 3:15 to 6:15pm with my 6 year old), so I do have distractions.  When my husband gets home from work, he does not do a thing to help me with the dog and no matter how many times I have been telling him that I am frustrated with the current situation and could use the help to get her on the right track again, he still has done nothing to help me out.  This morning I said to him to find her another home and that if he doesn’t I will.  Now, all of a sudden he says that when he gets home from work today he will take over and help me out.  Why does he have to take me to my breaking point?  Doesn’t he know that stress is no good for me?

Another example:  I was at the store with my daughters yesterday looking around for clothes that fit me.  I started my journey with them by saying, “I would like for you girls to be on your best behavior.  If you girls are good you can watch a movie and have oreos after dinner.”  In unison, they screamed, “Yay!”  I thought to myself, perfect!  I will be able to be in and out of the store in no time, no distractions to hold me back!

Wrong…

While at the store they did everything short of lighting the place on fire.  They ran through the aisles, held hands and danced around in circles, hid under clothes racks and sang at the top of their lungs.  I asked nicely to please stop and behave.  That didn’t work.  Step 2 was to start threatening.  I said, “If you do not stop right now, you will be going to your room as soon as you get home.”  That worked for about 5 minutes, and then they were right back to being destructive little heathens.  Step 3, the last step I took, was telling them that party time was over and when they got home they were going straight to bed.

The girls suddenly got quiet and stopped what they were doing!  Wow!  BUT… as my luck would have it, that very last threat I made before just giving up lasted a total of 3 minutes.  I was done stressing out over their behavior and to be quite honest with you, I just from there on out ignored them.  Yes, I was one of those moms that let their children run amuck and do whatever they pleased.  I was so overwhelmed with brain fog that I could not concentrate and I got dizzy and nauseous from being so incredibly pissed off that I just plain old ignored their behavior and went about my business as best as I could.

I quickly finished up searching the clearance rack for inexpensive chubby steroid clothes, got in the car with the girls and did not say a thing to them other than letting them know that I was extremely disappointed in their behavior.

We got home and I told the girls to get their pajamas on.  Within 5 minutes my husband was home, already aware of the situation that had taken place due to our phone conversation.  He walked into the girls’ room and let them know that they would be eating dinner in their beds and then going right to sleep.  There would be no tv or computer games for 2 days.  Of course they cried and apologized a million times, but it was too late for apologies.

Those were just 2 examples of being walked all over and not listened to.  The list can go on and on forever.  And everyone wonders why I am in a constant state of anxiety.  Why does it take threats for anyone to listen to me?  Maybe I should do the same to my husband:  send him to bed for not listening.  Haha!  I could only dream!

So where is that secret place that moms hide out and get the pampering they need and deserve?  Seriously!

What have I been doing that has kept me so busy?  To be completely honest with you, it is not what I have been doing but dealing with new symptoms of my illnesses and the side effects of my medications which have basically placed me into the zero motivation zone.  I have been mismanaging my time so much so that my household has become one huge chaotic mess.  Brent comes home from work and his head spins just because of my lack of organization skills.  It has been seeming like I’m running a circus lately.  I just can’t help it!  My brain has been fried from the steroids I’m on to try and get my lupus flare up under control.

My mother in law has just moved down here to Florida from New York and is staying with us at the moment.  She’s been here for a little over two weeks and is actively seeking employment.  Unfortunately, the economy is making it hard to find employment, however, she is no worse off than she was when she left New York.  In my humble opinion, she is better off because she is with us and the grandchildren.

The girls call my mother in law “Grandma Makeups” because she is a beautician of all kinds by trade and she loves to dress the girls up and pamper them.  My girls are walking on cloud 9 lately with Grandma Makeups here and it is so sweet to hear them get nervous and ask where she is going if she leaves the house.  They are going to be so sad when she gets completely settled here in Florida and moves into her own place (although she will be in the same town, and very close by).

Not only does my mother in law pamper the girls, she has helped us out tremendously with our lack of organization skills in the household.  She is slowly, but surely, transforming our circus of a household into what she likes to call a fine tuned machine.  She asked me if she was stepping on toes by giving out advice and said that she did not want to meddle in our business, but Brent and I have told her time and time again that she has been such a huge help and we are so blessed that she is here.  At this time in our lives, we need the help and I believe that God sent Brent’s mother here for that reason.  The girls are not walking all over me and taking advantage of my brain fog, we have a REAL routine, and bedtime runs smoothly now.  The woman works miracles!

In the husband department, Brent has been dealing with a whole host of random medical issues for a couple of years now and we are on the verge of piecing everything together and coming up with a diagnosis.  His symptoms include:  stomach bloating, extremely frequent bowel movements (I’m talking every single time he eats), migraines, pimples on his chest and back, a rash on his leg, fatigue, stomach pains, hiatal hernia, heart burn, tightening of the stomach when eating, and a whole host of other symptoms.  You know how some men (and women too!) can be… they don’t want to go to the doctor to get things checked out.  In Brent’s situation, I think it could be a combination of laziness and fear of the unknown.  Well, I finally took the bull by the horns, so to speak and made numerous doctor appointments for him over the past few months.

So far, test results have showed that Brent’s ALT liver enzymes are slightly elevated and he has a mildly fatty liver.  The gastrointerologist said that signs point to a gluten intolerance or allergy along with another diagnosis of the unknown.  He definitely has more than one issue going on here and is in need of a colonoscopy.  We have health insurance however, here is the kicker:  for a person of his age, the insurance company does not want to cover the procedure and it will cost us a pretty penny out of pocket.  The colonoscopy will be the answer to most of Brent’s mysterious symptoms, but we cannot afford to pay for a colonoscopy!  The next best bet is an endoscopy and my next task to tackle is a battle with the insurance company to cover this procedure.  I am sick and Brent is the only one working to support our family of 4.  Our daughters do not need 2 sick parents.  Hopefully the insurance company will cover some sort of procedure so that Brent can get the medical help he needs and if not I will be at Medicaid’s mercy.  We have tried to get Medicaid in the past but do not qualify, but if at first we don’t succeed, we will try again!

We have removed gluten from Brent’s diet about 3 weeks ago and have found much success with many symptoms subsiding.  It has been very tricky and time consuming.  I have been experimenting a lot in the kitchen with different foods and so far I have come up with several wonderful recipes out of random ingredients.  Last night I crushed up gluten free bread (which, by the way, tasted horrible when eaten as bread) and used it along with buttermilk, milk and drippings to make gravy.  I made meatballs to go inside of the gravy, simmered everything for an hour on the stove and poured everything over white rice.  It was a huge hit and made me feel so good that I could come up with such a recipe that everyone loved.  I am a vegetarian and go by smell alone, so this was a huge feat!

As far as I go, I have been switched from 80mg of prednisone to 64mg of methoprednisolone due to the fact that my C3 and C4 labwork is not improving with the prednisone.  My kidneys are still under attack thanks to Lupus and we needed to try a different method of defense.  The switch in medication has not caused any major difference in side effects.  I have no more insomniac moments and my narcolepsy is back, almost in full force.  I have been forced to take my provigil 200mg every day, and sometimes twice a day.  I am still hairy, full of water weight, pimply and moody, but on the bright side the methoprednisolone has caused me to lose 4 pounds over the past 3 1/2 weeks.  I do not suspect any more weight gain in the near future as I believe that the weight loss was more attributed to the stress of my mother in law moving in.  There is good stress and there is bad stress, and although I am so incredibly grateful for her moving in and helping out so much, it still was stressful initially.  Now that we have a smooth routine going on, I am less stressed out than I was before she got here.

I am able to control my moods better while on Abilify and I am up to 5mg.  Despite the increase in Abilify, I feel that I can still have my medication increased to a higher dosage.  I am looking forward to going to the psychiatrist again to have my dosage of either Abilify or Cymbalta increased.  I should not be as sad as I am as I do have a lot going for me.  I know that I do.  I have a wonderful, handsome, loving husband, 2 beautiful girls, support from friends and family, and despite barely surviving paycheck to paycheck, we do make it and things always end up working out in the end.  I just want to feel normal and look like my old self.  Looking like my old self is out of the question until I start to wean off of the steroids, so I guess medication is the answer for now.

I have been taking care of my garden when I can and have a beautiful avocado tree now growing strong.  I started the tree from the pit of one of my avocados in February and with a little bit of patience and a lot of love it is doing wonderfully!  My newest additions are a staghorn fern which I have hanging on the wall on my porch and some aloe plants , both of which my mom gave me.  In fact, my mom gave me all of my plants.  She is addicted to gardening and when she saw that I was finally getting into gardening and even better yet, the plants were not dying, she was thrilled!  The gardening has been excellent therapy for me, and I just wish I had more room to plant more.  I can only imagine what my yard would look like if we owned our own home.  I am sure it would be just one big nursery!

My mother in law cut my hair and I love the style!  I have been needing a haircut for about 3 months now and the cut she gave me compliments my steroid moon face.  It is amazing how something as simple as a haircut could boost my self esteem so much!  After I had my haircut I immediately painted my nails and toe nails and felt like a brand new woman!

Well, that’s what has been going on in my world in a nutshell!  I have been busy as a bee but hope to have my new routine even more settled in the next couple of weeks so that I will be able to take more time for myself, my blog and my website.  I hope that everyone has a wonderful weekend and God bless!