Getting Back to It

Hey there Readers and Followers!

It's been a long time. And I'm sorry about that.  I've been gone way too long.  So here's to starting fresh.  I got out of the habit of writing and just haven't been keeping promises to myself.  So I'm trying to start back. 

In the last 8 months I've been up and down with my SSU and I've tried a few new treatments.  I started Xolair shots and they have been working wonderful. I'm so much better than what I was 6 months ago.  I still have good days and bad but more good than bad.

I am riding a flare right now and it's a rough one but hopefully I'll get through it with flying colors.  I think it is in part due to stress; financial and personal.   So I'm trying to bounce back and blogging is one way to cope. 

On the financial front, I am saddened because the Xolair treatments that are working so fabulously have also come with a price.  My funding for Xolair is finished and my health insurance will no longer pay for them.   So as a last resort I have decided to ask for help.  I HATE asking for help.  It makes me feel like a failure.  I've started a GoFundMe campaign to help raise money for my treatments and with a little hope and prayers maybe I can continue treatments. So here I am asking.   I'm including the link to my campaign for my treatment.   Hopefully too this will also bring more attention to the disease.  I still pray for a cure and healing everyday.   Until next time, blessings to you all!  And I promise not to stay away so long this time.
Jackie ♡

gofundme.com/tkmeeg

Dreams and Inspiration 8 June 2014

Hello Readers!

I've talked in the past about inspiration and what drives me. I get my inspiration from many things, but today I share a dream.  I've always been a big dreamer and my dreams are often vivid and full of colors. Some of my dreams are reoccurring and the dream I'm about to tell is one of those. I've been having this dream for several years and each time I awaken completely inspired and refreshed. I think I draw love and hope and relief of finding these from this dream. So I've decided to share it. I hope no one is offended by the content. Enjoy it and may you find your inspiration.

Love and Blessings,
Jackie

Dreams...
It's cloudy and misty, the air is thick. I cannot see where I'm at or what I'm walking towards or even where I've come from. There's nothing around me, only the mist and it's never ending. I'm alone in this space and time. I realize I'm searching for something or someone, but what or whom exactly, I don't know. I'm not scared, but I am drawn to this place, like I need to be here. I know I will find what I'm looking for. There's nothing around, no trees, no hills, no landmarks of any kind, nothing. It's just this place covered in thick mist, it's almost comforting because I know I belong here. No fear at all, it's rather peaceful. I know I cannot be hurt here because this is where I will find what I'm looking for.

I've been searching and looking for what feels like hours or even days with no sign of anything. I'm ready to give up. Suddenly I see something, movement, but I cannot tell what it is. Hope is rising in my chest and desperation, a need to continue. I'm trying my hardest to get closer but I can't. I can't get trough the damn mist. I'm frustrated, aggravated, and I'm growing more and more impatient. Just when I 'm ready to give up and scream, quickly and unexpectedly it's clear, like the mist could sense that I was done and I was ready to give up.

I realize that I'm now standing in a bright green field filled with wild flowers  and daisies and roses. It's so colorful and smells wonderful. I look ahead in the distance and I see what I've been looking for, searching for, for so long. It's a person, but they are still so far away from me. I still cannot tell who it is or even if it's a man of a woman.  The distance is too great to see in detail. All I know is that I want them! I want them now! The feelings are uncontrollable and I realize finally it's who I've been searching for. It's the one person who will make me feel loved and wanted.

They see me too and start making the journey across the field. I also start trying to make my way. I take a step but it's like for every step forward the space between us gets farther away. I'm finally getting closer now but it's still so far away. There's progress, and I can make out the figure ahead and its a man, and for what seemed like such a long time in searching and waiting, I finally find him. Who is it? But I really already know who it is. It's the man I've been waiting for' the man who can rescue me from the mist. Nothing can hold me back from reaching him, I won't let anything stop me. I know who this is and I want him. I can feel his love in my heart and soul. To the core, the deepest depth of my sheer being needs him. I ache for him and need him like I need air to breathe. And finally I reach him.

Deep dark chocolate brown eyes with slight crinkles at the corners and they stare into mine with a warmth and joy like I've never seen. Also there's another side to him, a sexy smoldering just beneath the surface. He's happy to see me and relived, but hungry for love and lust, like a hunter waiting to pounce on the prize. H's standing here before me and I cannot believe he's really here. I smile up at him sweetly with a hint of seduction in my crooked little smile.

I like what I see and I know what I want, but I can't have it or at least shouldn't have it. There are no words spoken. There's no sound to be heard except the beating of our hearts. The sound is erratic and speeding, pounding, and the rhythm is driving me further towards my prize; like a seductive dance just building in intensity. It's like everything around us has disappeared once we realize what we were both searching for. It is a strange euphoric feeling. I'm not sure it is a good thing yet. I'm bound to get into trouble and I know better, but I want the quiet, the intensity of the closeness. I welcome it and he wants the same.

We're not even touching, only standing so close that if I wanted I could reach up and touch his face with my hand. I can feel the tension between us. I know he can too. It's so surreal, I'm standing in front of this beautiful, athletic, sexy man that I so desperately want and still I know it's wrong. I should remain in the mist.

Suddenly, he moves so quickly and smoothly, that I barely see him do it. He pulls me to his chest with his hands at my waist. His hands are large, strong hands that are a little rough and calloused, but with them touching my body, all I feel is their heat, and I know they belong on me. touching me in the most intimate ways. He raises one hand to my chin and pulls my face up so my eyes are forced to look up into his handsome radiant eyes and smile.

I cannot look away, I'm spellbound. It's like there's a magnet pulling me deeper and deeper into a time and space that I cannot escape from. He towers over me by a foot in height, but I'm comfortable, warm, and excited all at the thought of being with him, wrapped in his embrace. I want nothing more than for him to kiss me. And as if he can hear my very thoughts, he moves his hands up to cradle my face and leans down to place his lips to mine.

With lips so soft and full he kisses me, gently at first, and then with a heat and passion that has been smoldering, bursts into full flame; his kisses become more forceful and strong. Forcing my lips open, his tongue invades my mouth and I surrender to his will. I wrap my arms around his neck and open myself to him, his passion and his love. I don't care about anything going on around us or have any cares or fears. None of it matters when we're together. I've found him finally, the mist has cleared and I'm home in his arms. And with a final kiss I wake.

Spring Has Sprung!

21 May 2014

Well folks the frozen tundra that is Indiana has finally melted. I'm thankful for non-freezing temps. We had a very long winter here, which meant major cabin fever for me. But then again I have cabin fever year round now. I have found I miss going outside during the day and looking at all the spring growth and flowers budding. I'm going to have to put on all my gear and go out  at dusk and walk our flower beds. Maybe I can get some photos taken too. One of my favorite things to do in the spring was take pictures of the flowers.

Speaking of spring,  both it and the time change have thrown my system for a loop. I'm finding that I have to adjust my days and schedule according to the rising and setting of the sun. So that means I'm sleeping later to avoid the sun and also staying up later. I've also started showering at night and lighting the bathroom with candles. It's just easier on me when it comes to overall exposure levels. So with the latest swing in flares and good days vs bad days, I'm having a hard time adjusting, and that brings me down a little.

As for my current treatment, I was taking Methotrexate but I've stopped responding to it and my symptoms have increased. So my doctors are researching treatment options for me and I have a appointment this Friday to discuss the remaining options. So needless to say I've been praying a lot for answers, solutions, healing and guidance.

Since I've been having a rough go of it, my mom surprised me by making an outdoor patio out of her potting shed. She moved out all the gardening things and moved in an outdoor love seat and tables and candles. She even hung wind chimes. She made a wonderful night time oasis for she and I to escape to after dark. It's my new happy place and I absolutely love it . What a mother won't do to make her child happy; even if that child is 38 years old. I love her so much!

Daisy J's Creations, my crafting business, is keeping me busy. I have haven't sold any think on Etsy yet but I've been doing quite a decent little business on private sales, and traffic on Etsy is picking up. "Shameless business plug"- lol. Feel free to check out the shop at https://DaisyJsCreations.etsy.com

I look at my business as something to keep me busy and my mind occupied. I can't make a living off it but at least it keeps me happy and active and helps support my artistic side.

The gluten free diet is going well. I didn't think it was helping much but actually it is. I haven't noticed ti helping my skin but it is helping me lose weight. I find that I don't over eat like I sued to. I have more energy and I'm not craving carbs like I used to. So I'm sticking with it. I've actually lost a couple of pounds which is good. I need to be in the best shape possible in all other areas.

 In my quest for gluten free bread, I've tried some terrible tasting breads and baked goods and I wanted to share a wonderful bakery website. You can order their bread or the ingredients for the bread if you want to bake it yourself. It's fresh and is shipped quickly, and tastes amazing. I highly recommend it.

The bakery is Little Aussie Bakery & Cafe; their website is www.thelittleaussiebakery.com
They are out of Texas and they have several recipes on their site. So check them out.

Well that's about if for now. I'll be keeping you posted on treatments and other fun moments in life.

Love and Blessings,
Jackie

Bumps in the Road

Hey there long lost friends!

It's been forever and a year since our last posting. So sorry about that, but between Buffy's family getting winter sickies and my family having sickies we're finally back on track. I think this is a perfect time to discuss "bumps in the road".

Everyone's journey on this Earth will have curves in the road. Sometimes that road will be smooth sailing and other times will be bumpy and hard to travel. Sometimes we stumble and need help back up. I am no exception to this.

When I.'m having a flair I'm grouchy, whiny, and just not real fun to be around. So glad I'm over this last one. It's hard and I'm so very thankful that my family has patience. We don't really know what caused this one but sometimes I get stressed out by all of this, especially the financial part.

So after talking with he doctor she has recommended yoga and activity. I have to admit I've been a slug lately. But no more. I've started back with Weight Watchers and buckled down on my eating habits. I've also started yoga. I'm not very good at it yet, but it does help. I'm less tense and I feel great after a session. So we will see where this leads.

Also in an attempt to stave off boredom and keep the creativity up a storm. I've even opened an Etsy Store to sell some of my things. It takes minimal light time and it helps bring in some extra cash. I'm still off work and yes it stinks, but with this last set back what can you do but pick yourself up and carry on.

I still pray everyday for a miracle of for patience and healing. I also pray for others who have this disease and hope that one day it won't be an issue anymore. Maybe there will bean awareness day for PMLE and SU. It's just such a mystery still and each case is unique.

Until next time hang in there and I promise it won't be too long between postings.

Love and Blessings,
Jackie

Hello!

Hello to everyone that has been reading and keeping up with Jackie and her blog! We have been struggling with health on both sides of Camp Jackie and Camp Buffy. Jackie had caught a bug and then she has been having some severe light sensitivity. Camp Buffy has had some bug issues too, but hopefully we will both be back to a good place soon and back to a regular blog!

Inspiration and Stress Relief

In my research with SU and by advice of doctors, I have learned that it is very important to avoid stress. When your body/mind are under stress it wreaks havoc with your immune system causing it to over react and release chemicals into your body, which as a result causes SU to react harshly within your body. As a result I become more sensitive and reactive to light and end up with set backs. One one way I combat stress is exercise, which I've talked about in past postings, but the other way is through arts and crafts. I've always been told play to your strengths, and one of my largest strengths is my creativity. I've always thought of myself as an artist and it is a God given talent that I'm proud of. So,use your talents to manage your stress levels and stay happy and healthy.

I've always had a very active and creative imagination which my parents always encouraged. In my personal opinion I think the arts get left by the wayside too much. If I could go back in time and change my college major I would have gone to school for art and developed my talents to make a living on my arts. But I went another way in my schooling. I don't regret it because it lead be to who I am today, but sometimes I wonder "what if". So before I got sick I was an insurance agent by trade ad an artist by heart,. Hopefuly one day I can focus more on being an artist by trade.

I'm not afraid of trying anything new in the realm of art, except acting. I'm terrible at acting or playing a part, but that's a whole other story for other blog entries. I've worked with all different kinds of mediums and learned all different types of crafts. My current favorites are crocheting and painting. The majority of my creations I give away as gifts or I donate to the less fortunate. My favorite thing lately has been crocheting hats and donating them to the poor, and since spring is coming I'm thinking I may make chemo caps and donate those to the local hospital. All my donations stay local to help out my own community.

Of the things I have created and kept for myself I keep close to me in my bedroom since that is where I spend a lot of my time escaping from the light and staying under cover. And the art I create for myself has special meaning and a place in my heart.

Whether that be a painting or sculpture or a crocheted blanket. It all has meaning or has been a product of inspiration and expression. I even have a couple of tattoos that I was inspired to get when I was younger. I have one other tattoo that I had decided on but since developing SU I cannot get it. So I had another artist make me a bracelet which represents my tattoo, and I can keep it close to my heart instead.

 People have asked me, "How do you do that?" and I can't really answer them. I see something in my head and I create it, whether that be in pencil drawing, painting, sculpture, or fabric or paper. I just see what I want and I manipulate the materials until my version is created. I've never had any professional training except one drawing class in college. My step mother-in-law tells me its a gift that God has bestowed on me and I agree. I have no other explanation. For whatever reason I was gifted with the arts.

The other question people also ask me is "what inspires you or gives you your ideas?" And to answer that I say life experiences and people in my life, or just the dreams in my head and my crazy unending daydreams. Anything can inspire me. To one who looks for inspiration use anything you experience. From your first kiss to a beautiful photo to a conversation with an old and special friend to the joy of holding a new baby in your arms. Use it all.

For me art is my main stress reliever a take all of my feelings fears, joys, worries, anger, and frustrations. All of it goes in my art. When I combine all of that with my inspiration I work everything out. Even writing this blog helps me get my stress and feelings out. So to my readers I say find your niche and I hope this helps you find your reliever. Until next time I wish you all well.

A Clean Slate and New Beginnings

***1 February 2014***
It's a strange feeling to start new beginnings. You may feel fear, or excitement or joy or even relief. You may feel one of those or all of those feeling all at once. Since September my life has been full of new beginnings and changes. Some changes have been wonderful and some a struggle, but all of those changes have brought me to today.

Yesterday was a huge and amazing change in my life. A fresh start, a clean slate. My relationship with Jesus has been growing over the years. I don't have any one date that I can definitively say I accepted Jesus Christ and became a believer, but I can say that on January 31, 2014 I was baptized in his name and was washed clean and accepted into his arms. It was an amazing experience and the feeling for me isn't something I can completely put into words. But I took all my worries , fears, past failings and put it all into Jesus' hands and he lifted them off my shoulders making my load easier to bear. It was one of the best decisions I've ever made.

I know the path is long and filled with curves and rocks and I will come upon trials and temptations, and I know as a human I am a sinner, but with Jesus as my savior I am saved and with God in my corner everything will be fine. I will work to make him proud and serve. Nothing is impossible with God.

***10 February 2014***
In the last several days since my baptism I find my faith is renewed and strong. I am so thankful for the many blessings I've received and I look forward to the future and leave behind my past failures. I've faced fears and worries and I've asked for advice in dealing with decisions I have to make on a daily basis. My life is forever changed and I am happy and have no regrets in life. Every trial and bump in the road brings a lesson, and right now I'm learning patience. Patience is something I've been struggling with, and knowing everything happens in good time, this is my current lesson. Having patience with my own healing or having patience with those who don't understand my illness, and having patience with people who are making decisions about my future and leaving me hanging while they decide if I must return to work before my body is ready and against doctors orders. Even with my medication that isn't regulated yet.

So I ask for patience in my prayers and I let God know my frustrations and fears. I try to give it all to Him, he can handle everything and bring peace and stability back to my life.

Deciding to be baptized was one of the best decisions I've ever made in my life. I believe it has changed my life forever. Not to say I won't struggle and slip along the path but it is one more tool for me to pick myself back up and learn to carry on and live a good life. It reminds me that no matter what I may face in life, God loves me and is part of me. He created me and will never abandon me even in the hardest of times. I am loved, I am a sinner , and through His love I am forgiven.