Wednesday, January 11, 2012

Alright. So the kiddo, being a strong-willed girl and knowing what she wants, insists I make heart-patterned clothes for her frog. So I'm going to attempt to hybrid two patterns and see what happens. I'll post results when they happen ^_^

Also, I made Chicken Divan for dinner tonight. I short-cutted some of the prep because it seemed ridiculous (I don't really feel the need to poach chicken when I can dice it and sautee it with the onions and garlic for better flavor...)

Wishing I did't live in the middle of nowhere...

so I could find  a support group to help myself and others. This has been the worst stretch of Gastroparesis I've ever had. It is not only terrible in throwing off my sleep cycle, but I inevitably end up waking up my guy and my kiddo. And it makes it harder to fight off the urge to nap during the day, which is also bad for sleep (obviously). My goals for this year are now more specific and realistic. By next year, I will still be sick. This is probably going to stick around as long as I do. But it will not defeat me. I am going to have these issues under better control by next year.

   I am also going to shift my focus from being sick, to being a better parent. I'm not the only one who lives with it every day. My daughter does too.

In crafty news, I started crocheting a baby elephant for my kiddo, and she has also asked me to make clothes for her Scentsy buddy, Froggert. She feels he needs clothes with hearts on them, and by the end of the day I intend to find a pattern to knit or crochet her such. I also have a Martha Stewart knitting and weaving tool coming from, as well as four skeins of alpaca yarn to make my guy a really nice scarf. He does a lot for us, and deserves nice things.

Sunday, January 8, 2012

Wondering if anyone else...

with an auto-immune disorder feels like they're sort of re-visiting the angst and insecurity of teenage life? It's so bizarre and deeply uncomfortable. And hard.

And so passes another night with even less rest. I need better help with this Gastroparesis crap. I am going to beat this.

Rough Night.

Despite using a good relaxation soundscape, gastro is giving me a bad time both last night and this morning. Looks like I'll be taking it slower today than I hoped...

I took some Yellow Root-based tonic that my cousin Mechell made and gave to me, and at first it numbed my stomach really well, but then I threw up. My stomach does feel a bit better, which is good. But I'm now feeling the effects of last night's poor sleep. I really love the Emu Oil lotion she also sent me for Christmas. It's fantastic!

Saturday, January 7, 2012

So, I really want to invest more time and effort into this, and help others.

On Facebook, I belong to Gastroparesis Support and Living With Sjogren's Syndrome communities. I have done research online, through my brilliant cousin Mechell who is awesome and well-versed in Holistic Medicine among other talents. I have a family history of auto-immune disorders, though I'm still pending a formal diagnosis of Sjogren's. I use Biotene toothpaste, mouthwash and hydrating gel (at night), Thera Tears as needed, Refresh P. M. sensitive ointment (at night) and am on Neurontin for the diagnosed Fibromyalgia, though it's never really helped. I'm hoping to get my doctor to prescribe Domperidone for my stomach and maybe try Lyrica for the neurological pain. I've also considered asking for an ADD medication for my fog and inability to concentrate well. I use olive oil-based soap for my face because it's non-drying, but cleanses well and Dove Sensitive SPF 15 lotion. And for my body, I use Olay Body Butter Ribbons. I was using a steroid solution called Clobetasol for my Seborrheic Dermatitis but it isn't working anymore. And I take Lisinopril for my Polycystic Kidney Disease.

I hope to make this an open forum for others who suffer from chronic illnesses to help one another. I also hope to use what I learn as I go to help other mothers organize and figure out how to better manage their time. My lovely daughter will soon be 3!

In coping with my medical issues, I am fortunate enough to have a loving, supportive boyfriend in my life. He is the love of my life, and my greatest supporter in life. He is a fantastic partner and parent, and I am incredibly lucky.

My main entertainments outside of my family are usually craft-related, and I enjoy sharing what I create with others. I look forward to sharing that aspect with my readers also!

I wish all of you peace, strength, hope and love for the new year!


An Update.

So far, I've been diagnosed with Gastroparesis, and I suspect I have Sjogren's Syndrome and not Fibromyalgia as diagnosed. Through research and trial and error, I am now using Thera-Tears instead of allergy eye drops as previously advised, and a saline nasal gel which is reducing my nosebleed frequency. I am also using Biotene tooth paste, mouth wash and mouth gel at night to reduce my dry mouth (previously thought to be chronic thirst, attributed to my kidney disease) and reducing my mouth sores. Every day I'm learning and hoping to find a means of better managing these issues and modifying how I craft. I just have to keep moving and fighting this.