Today's Thoughts... Faith, Strength, Grief and Coping

Family is the most important thing in the world as you are growing up, but what happens when one or both of your parents pass away, that unit starts to fall apart.  I think that is what happened in our family.  Our mom will be asleep in death 20 years in October.  That one event changed our lives as we knew it, and changed us as well.  I have three siblings, all younger than me.  

I have always been a tough kid, lived on my own from a young age, but I always had to talk to and hear from my mom, even if it were just to say hello, just knowing that she was there, was enough at times to get me through the toughest of ordeals, my Daddy was everything to me, he fell asleep in death nine years after our mother.  

When people tell you time heals all wounds, let me tell you they are wrong, the death of a parent or the death of a child are not something you get over no matter how many years pass, yes one can learn to cope with these things,  but at times I can't keep the tears from surfacing, pouring out and just taking over my day... I miss them.  

My oldest son was a twin, before birth I didn't know that, but as soon as they told me the pangs of grief hit, making it that much more important to keep my son alive no matter what happened to us, I am so happy to say he turned 30 years old this past February, but that is as well 30 years I have mourned his sibling.  

Even before that, long ago when I was a child, I learned what grieving a loved one was like, for my two grandmothers both died when I was young, my mother's mom, died about a month before I turned 12 and then my other grandmother died when I was 13.  I grieved my Granny, for she and I shared Spiritual Interests, we read the Bible together and prayed together all the time, while she was battling her cancer, I think it is from her strong faith and true example that I have gained the strength to keep on fighting this battle, no matter what my Lupus has thrown at me.  

Sometimes we just need that good example to follow, I am so thankful, that she showed me where her true strength came from.  

My faith came from an early ritual of Bible Reading, Daily Prayers, and Meditation on the Scriptures of the Bible and all the true Blessing Jehovah bestowed up on me, and created all around me.  Many people don't see a sick person, when they look at me, I hide it well... sometimes too well.  I suffer in silence and alone, I don't tell a whole lot of people about what I go through, the closest ones to me, know, because they see more of me that I can't hide from them, the pain, the nausea, the vomiting, the migraines, the dizziness, the falling, the fatigue, some of my closest friends, have known me long enough that they know I have had several strokes, but I hardly ever talk about all of this to anyone, that is why I am going to try to increase my blogging, to start talking and showing others, that there is a way to cope with this wicked system of things... to truly start building a relationship with your heavenly father and creator, that can fortify you when you need it, comfort you when you need it.  

James 4:8 says " Draw unto me and I will draw unto you." That is a personal invitation for us to form a truly great friendship with our maker.  What are we all waiting for? 

Pick your self up off the ground and pick up your Bible, and find the strength from the scriptures, from the many examples of men and women who have gone through some similar things we are facing and gain courage, strength and faith from meditating on those examples and praying for him to give you what you need to survive these situations we are facing.  

Thank you all for reading my blogs, I pray that something I am writing can benefit somebody somewhere, to help you find the courage and strength to continue to keep on coping in life... 

Until next time, agape Love to all.

Memories...and what happens when you lose them...

Fibrofog...

It is hard to deal with memory loss even if it is just loss of concentration, or if it is periods of time that you can't remember, what is sad though is when you have this thing called Fibrofog, or Brainfog, some times you can get this even when you don't have Fibromyalgia, but mine started a while back before I got to WA state, but it was fully explained to me by a good Rheumatologist out there, he is the one that found my Fibromyalgia, too bad he didn't discover I had Lupus too, that didn't get discovered until much later, but in 1996 I started seeing a doctor, in Olympia, WA, and he found that I was suffering from something very real, and very dangerous if you ignored it.  

I was a single mom, had just lost my mother in October of 1994, major move to WA from TX and dealt with the death of my marriage.  That was a whole other story to be told later, back to the fibro-fog.....it is where you can't remember where you put things, you look for them for hours and then you find they were right in front of you the whole time.  

You forget to do things, you forget that the water bill was due yesterday and cut off is today until the little guy from the water dept. walks up and knocks on your door, to give you a friendly reminder before he shuts it off. I liked that kid.  I have gotten better though, in the past few years.  You have to constantly battle forgetfulness, and some people will even call you a flat out liar, which devastates your very being and soul, You aren't lying, you just forgot. 

What is worse is when you were paying a bill, or doing something that needed to be done, you thought you finished it, but then later some time later, discover you never finished it....wow, what a big mistake.  That isn't good when you run a business.... but I dealt with it for years.  Now I have a good secretary who writes things down on her desk and she tries to keep me on track.  

Short term and long term memory loss is very hard to deal with especially when you were a very intelligent and independent woman all of your life, who always prided herself on being punctual, prompt and proper.  

Lupus Confusion...

Now add Lupus to the mix... and it really all becomes interesting.  Now not only are you forgetting from day to day, but now there are times you can't remember what you are supposed to do in a week or a month, you have missed doctors' appointments, missed deadlines, missed payments and days where you just don't want to get up and all you want to do is stay in bed and give up.....

You can't... 

Strokes...mini...TIAs...and major....

Now it all just gets thrown in a big old bowl of unknown....look out what is flying around above your head, because something is gonna just come up and hit you smack in the face.

My husband doesn't know it, nine years later, but we started going out to eat all the time, because I literally forgot how to cook, now for somebody who used to pride herself in being able to follow a recipe and cook up anything in a recipe book, that was one of the hardest things for me to deal with after my first stroke.  I lost memories, I forgot how to do things, what was sad is I knew I used to know how to do those things and did them all well.... 

What do you do, then a memory of what my doctor told me years ago when he diagnosed me with Fibromyalgia, You are a very determined young lady, you are the strongest woman I have come to meet in my entire life, and I am pretty old, I just can't picture you lying in a bed and giving into this or any other disease, I see you fighting it every day and every step of the way... YOU have a purpose, to touch lives, so therefore, I know you will draw strength from your faith and continue on to face whatever comes for many years to come... I have patients when they are told they have Fibromyalgia, that draw up inside themselves and stop living, I see you going forward and learning to control your diseases, not allowing them to control you.... WOW what a memory to regain in the midst of learning to even walk again without a cane....to cook again without burning water, to scramble an egg that is eatable, much less putting on an extravagant meal or desert like I can remember I used to make. 

So I picked myself up, pulled up my big girl panties and started living all over again, 2005 was definitely a year of changes for me... I became severely disabled overnight, one day I was living it up, the next my whole right side was paralyzed from a stroke I had, sitting in the ER flat of my back not being able to talk so people could understand me good, I will never forget my only thought was of my son and my husband....who was gonna take care of them, Christopher had moved into a group home the month before, was scheduled to graduate from High School in just four weeks... what was I going to do.... so the doctor come in and explained about that new clot busting medication (good thing I had just watched an episode of ER, where a lady had just survived a stroke, because of that medication, or I may not have allowed them to give it to me) but the 3 hour window was closing fast to possibly reverse the effects of the stroke.  I told him I wouldn't sign the release until I got to talk to my sister, Tanna who lived in TX.  I was losing time, but finally the doctor asked me for her phone number and he dialed her from his cell phone.  I wanted her to promise me that she would help take care of Christopher and allow Marco to go on as a single man without obligations, for her to go to see Christopher and make sure he was taken care of if I didn't survive this night... 

She told me just sign the release and we will talk... I refused....she had to promise me first.  Tears rolling down my face... She said of course Dorraine, I will help Marco take care of your things and get Christopher settled down. Now please sign the paper..... I did the best I could with my left hand, they gave me the medication, and it busted up the clot, but I laid flat of my back for three and a half more days in CICU Cardiac Intensive Care Unit. on the fourth day, they sat me up, and on the fifth day they moved me to a regular floor to start walking and moving on my own.

That began my long journey to learning to live all over again. Yes there have been major obstacles in my road, but with the help of Jehovah, I survive, endure, have patience beyond what I can even comprehend.  I am at times so amazed at how much I have gone through and what I have been able to cope with in my life, but I am nothing without him and everything with him....for Jehovah our heavenly father is holding onto my right hand in his right hand and never allowing me to totter..... 

One day I will look back at all of these things, and say man was that some ride.  But look where it got me.

Hope all of you have a great day, <3

Dorraine

Lupus Monday.... Gotta love it.

Living With Lupus...never been on a roller coaster quite like this one...

I was diagnosed with Lupus in a funny weird kind of way.... I had just spent 5 wonderful days on vacation with my husband in the middle of July of 2002, in none other than my Beautiful Washington State, showing Marco where I had  lived while in WA state, in the Olympic Mountains area... foothills to be exact.  I so missed it, and was extremely happy to be spending several days around the area that I still to this day so love.

We had spent those few days, visiting friends, hiking in the mountains, visiting the ocean shores, and making some new memories for us to share in the future.  We left WA in the late evening hours, to be home by the next morning.  I was only going to have one hour and forty-five minutes to get Marco home and get to work on time... after landing at the airport.  We picked up our luggage, and we unloaded baggages, and I kissed my Christopher hello, and spent only enough time at home to change into some fresh clothes, and head back out the door for work.  

Upon getting to work and sitting down at my desk, I noticed my shoes were getting too tight, so I changed into some slippers as I often did at work during the day to keep the pressure off of my swelling feet.  As the day progressed I noticed my wedding rings were cutting into my finger, and my slippers  into my feet as well, I started running a slight fever and aching all over, my face had that red coloring to it, everyone said that the WA weather had put the color back into my cheeks, so I thought nothing of it.  That evening as I got ready to go home, I felt horrible, like I had caught some horrific type of flu....I was so exhausted, I don't know how I even made it home, I crashed as soon as I walked through my bedroom doors, and Marco peeled my slippers off of my feet, and my Christopher cuddled up beside me and told me "ooooh Dorraine, you hot"..... my body hurt like it had been run over by a convoy of 18-wheelers.... and left on the side of the road for dead.

The next morning my fevers were spiking, and all the muscles in my body were hurting, and Marco took me to the doctor, I was so swollen I couldn't even put on my pair of soft slippers... so I went to the doctor in a pair of Christopher's flip flops... my regular doctor wasn't in that morning, so the other associate saw me, and she asked me the regular questions about how long these symptoms had been happening, and I told her since Monday evening, and got worse during my day at work, and overnight, she asked me to tell her what had been different about the previous days leading up to the onset of these symptoms, so I told her about our beautiful vacation hiking and enjoying the beautiful outdoors in WA state, and she said..... (are you guys ready for this?)

..."How long have you been diagnosed with Lupus?"  I looked at her crazy like I guess, because she rephrased the question..."When were you diagnosed with Lupus?".... I answered with a question......"Are you telling me I have Lupus?"

That was the day my life changed as we knew it... my life just truly got harder for a long time to come.... I refused to tell my dad anything for he was already having many health issues himself, and I didn't want him to worry about me... so I kept it between Marco and I....

Sometimes I think back to that day, and I am not for sure how I should have felt, but I know I was relieved.... I wasn't just imagining all the bad things that I had been going through, I was stupidly insane, or crazy, I was really sick.... now to deal with it all.... the best way I could, the way I had always dealt with everything..... Putting my full trust in God to get me through it all.... I turned to Jehovah in prayers... to deal with it all with a strength and faith.... <3.  That day was a day that I learned I was a whole lot stronger than I felt.

More details later on in another blog, for today is a Lupus Monday, I forgot to take my injection this morning for my lupus treatment, so I gotta go run and do that now, love to all of you, and I pray for you all daily. <3 

Sorry, but the <3 makes a heart on facebook, don't know why it doesn't everywhere else....

Dorraine

My Best Friend and Partner...

My best friend and partner...

by Dorraine Storm-Lugo

In June of 1999, after a few years of really having a hard time of everything after losing my mother in October of 1994, divorcing the father of my children, losing my home, and then relocating back to Texas in 1998, only to have more devastation hit my life... 

In May of 1998, I got hurt in an accident while working at a truck stop, as a waitress, very busy night, slipped on some ice, I caught myself from falling flat of my butt by grabbing onto a table, never realizing I did more damage to my wrist than I had done to my foot, I strained the muscles of my right ankle, and was off work for a good bit... I realized I needed a different job, and was accepted to work as a cashier at our local Wal-Mart.... I thought my life was finally going to work out.... boy was I wrong.

A month later, my house burned down with all of my craft store supplies and crafted items, I lost almost everything I had ever owned, and my pets, two beautiful black and white miniature long hair Pekingeses, and a beautiful beloved male cockatiel, named Tweety Bird....who talked with me and danced to my music.... my son and a cousin were in the house when it caught on fire, thank God, they made it out alive and with only minor damage... my son's left eye's retina detached nasally and for a long while, we just went through the motions of existing, our local Wal-Mart donated some clothing, and immediate household items, and that began the long dark journey that I am going to try to describe in this blog, so that all understand, that life's issues really do take a toll on us all...

A month after losing my house, I realized I couldn't turn my right wrist over and it was very painful, I went to the hospital where they determined that the accident in the restaurant had torn all the cartilage in my wrist....and hand and between my bones in my arm...which needed an operation to fix, the worst part is being told at that age you have a birth defect.... my ulna bones are both too long and leaving no space between the bottom of my ulna and the bone that starts my hand...so therefore the cartilage wasn't going to heal without removing a piece of the ulna and putting it all back together with a plate and screws, so here I am in a cast for the next five months.... becoming deeply depressed, and so I decided to try to move closer to my sisters, who lived near Houston, and once again, I thought maybe my life would get back on track, but no.... not yet...it was just going to continue to get worse for a long while to come.

In March of the next year, 1999 my son was injured to his eye, which lead to an eye surgery and I realized within a month that he had lost the eyesight that he had....lived with all of his life, he was Visually impaired from birth, but now he was 15 and lost all of his vision.... that is when the epileptic seizures started up again... the next month or so was the hardest of my life, so I fell down to my knees, crying and begging God to send me a partner to get me through this toughest time of my life, ... needless to say, it was all just the beginning and I think Jehovah knew I was going to need a partner to help me survive it all, the next day I met my Marco Antonio in a laundry mat.... 

How many of you all believe in love at first sight.... we started dating, he proposed within months and we were engaged 9 months later.... we got married six months after that.... in between meeting him and our marriage, my son got sicker, and my daughter moved out of our home, and got married and was expecting her first child... I lost my daughter, and my son as I knew him to be that year, our whole life started spiraling out of control...the only thing I had to hang on to, was my faith in God, that nothing was going to be too strong for me to handle, and my new marriage, that was really already facing trials and tribulations it shouldn't have ever had to face.....

Things were okay, I lost my job and got really sick shortly after our marriage, my son and my husband bonded so well, I am going to be forever grateful for the husband that Jehovah provided me.... for I know without him, I may not have survived my life from 2000-2003.

More to come on that one soon, here are a couple of photos of us, one is from 2005 the month I had my first major stroke, and the next one is from two years ago, right before I had my last one..... <3 

Leona Mae Foundation

Leona Mae Foundation

Founded in 2011

by Dorraine Storm-Lugo and Marco Lugo

In 1994 I was making a crocheted baby bonnet or cap, for a gift for a friend so that she could give it to her friend at a baby shower, I was working on it, while visiting my mother on a two week trip back home to Belton, TX from WA state, where I had moved to only two months earlier... if only I had known my mom was going to be diagnosed with terminal lung cancer, hereditary by the way... I would have put off my move to another state, and cherished my last few months with my mother instead, but as it was a difficult thing... I had chosen WA state for moving our family to, in order to prevent an early death for my son, Christopher, who was literally dying before my very eyes, from uncontrollable Epilepsy.  

Anyways, on August 6th, my dad called me to tell me my mother was in the hospital, where they had just found and diagnosed her with small oat cell Lung Cancer, rapid growing type, which they had determined was a hereditary lung cancer she had lost her mom to when I was just a child, all too familiar with what her mother had gone through during her battle, which was over 11 years of my life, I was praying I would be as fortunate as that to be able to see my mother battle hers for a long while yet, but the next words out of my father's mouth devastated me, they give her 3 months to live at most with the treatments.  I instantly tried finding a way to come home to see her...and possibly stay with her, my trip was planned for 3-4 weeks, but even before I could make all my plans, my father called me back to tell me they found cancer in her bones, and tumors in her brain a few days later..... oh man, my life started a turn for the worse.

I got home to Texas, where everything was so different than it was when I left it.

My mother had lost almost 40 pounds, in just the two months  that had passed since we left Texas... she was just a shell of the person I knew as my Mother.... 

I was crocheting and we were talking about her losing her hair, and she told me... " My that sure is a pretty cap you are making, Dorraine", I looked up at her, and she was holding a small hand full of hair, she had a tear rolling down her cheek... "Maybe you should make some pretty hats for the lovely ladies that are losing their hair like I am...you can make such beautiful things, I am sure that your caps could make the ladies feel pretty when this cancer and treatments make them feel ugly".... I will never forget that.... 

Two days later, I was on a plane back to WA, where my Christopher and Rita were for the first time in their lives away from their Mom.  I instantly found a beautiful soft yarn, in Mama's favorite colors, she loved greens, emeralds and jades..... any shade really.... so I started fiddling around with the hats from baby patterns.... and started one for her... a couple of weeks had went by with all the working up a pattern, it being too small, tearing it back out and redoing it.... when I got a call from my Dad, "Dorraine, they took your mom to the hospital and she won't be coming back home this time...." 

Needless to say, I was on a plane the very next morning, thanks to my now ex-Sister in law.... I will never forget her giving heart that year, two trips home to see my mom before she died, I will never forget that.... 

I made it really late that night from the Austin airport, to the hospital where my mom was lying in a coma... I hadn't made it in time to get to talk to her, because she had drifted into a coma that afternoon. 

My mom died that Friday afternoon, my world started crashing out of control.... and that is what leads us into what is called Stress related diseases..... which will all be covered by other blogs.....

So my mother died at 47 years of age, and her mother had died at the age of 47, and now I am facing 47 years of age, so when I had outlived my mother by one day, I decided I wanted to do something with the rest of my life.....so I talked to my husband and we formed the 

Leona Mae Foundation.... where we give hand made gifts to those suffering from illnesses, and diseases, stresses in life that causes such pain and grief, that affects one's ability to live life normally from day to day... we are not a big foundation, yet, we are however a big hearted one..... 

So my foundation makes handmade gifts and gives them to cancer patients, survivors and their caregivers, to others who suffer from other invisible and visible disabilities in life... to bring cheer and joy to all those who receive a loving reminder from our foundation that they are not alone in this battle called life. 

I will add more blogs about our foundation and its accomplishments from time to time, but this is a start to tell you a little bit more about me... love to you all, Dorraine

An Introduction to Me.... Dorraine Rae Storm-Lugo

Hello everyone, 

I am so truly blessed to still be here, but it has truly taken me over a decade to restart my life.  I am going to start here and today, and try to fill in the blanks as we go.  So here we are, I am going to be writing my story to all of you in the first person but my introduction I had written when thinking of telling a good story to all based on my life, but as a third person effect.....

I am going to start by giving you a few details, I am married, raising two children, nine years of age, and trying to rebuild my life as it was so rudely destroyed between the years of 1998 and 2005... you are wondering what took so long to destroy me.... I will gladly fill you all in.  But for now, lets see what has led me to this BLOG.... I was sitting here at the end of my day on Friday, after closing my office, children were playing, Daddy was  busy, so I was  all alone after closing for the week, and sat here in a thoughtful fog.... here is what came out....

Learning to Live Again

by Dorraine Rae Storm-Lugo

July 11, 2014

Sitting at her desk, she was deeply lost in her thoughts,  she realized she was finally healing, finally starting to live again, why had it taken her this long, when had her life truly started falling apart, when had she stopped living and only existing?  

Her busy day had truly left her exhausted beyond what she was even used to experiencing. This past week she had been waking even before the alarm went off, having set the alarm rather earlier than normal for those days, knowing she had a very busy day in her office, she had a ton of work to get done, so she had been setting the alarm to go off between seven and seven thirty every morning, but something was causing her to be awake even before that every day, even if she had a late night the evening before. 

She was thinking of her hectically busy life, and how she was yearning for more time for spiritual activities and family life; time in the preaching work, witnessing, and time with her husband and children.  She was trying to figure out how to slow down a little bit and take more time for those very important aspects of her life, this past year she had made some good changes, towards regaining herself and her happiness back into her life, making a difference in others' lives, and trying to reconnect to her husband and family.

To look at her, one sees what looks like a normal healthy and happy woman, that is because she has tried so hard for so long to hide the truth and her limitations from all except her immediate family, she was even hiding the whole truth from her children... She had done a good job, hiding the truth from the world for so long, that she didn't know exactly how to start telling the truth, she had thought for a long time to write a story, start a blog, or something, maybe what she has found to cope with and relearn to live with would help somebody else.... who knows. 

So here goes, Welcome to Dorraine's world she thought, ... how is anyone going to ever really know what it is like to live with invisible diseases unless somebody truly stood up and spoke out?  So here I go...

I am going to let you all have a good look see what it is truly like in my world... and learn what it is like when you have to Learn to Live all over again... after such a devastatingly horrific ordeal in one's life before ever turning 41.