Saturday, March 24, 2012

Boy, has it been a tough and busy month!

I want to start this post off by sharing something very important to me, that I need to make a point in sharing with others: I fiercely love God. I realize that I've never made it a point to share that openly with anyone except those I know who also do. And since it's an area my fiance has trouble with beyond his belief in God, I have moments where I share my views and beliefs, and my personal experience with God. In this, I've taken to reading other Christian Housewife blogs. I may not agree entirely with everything these women believe, but I want to make my life a living example of God's love and grace, and encourage others to do the same. I want to be a true help meet to my future husband, and to encourage and support his growth in all areas of his life, especially spiritually. We are an unconventional family in many areas, but I want to plant the seeds of faith, personal growth, tradition, humility, community, and most of all...LOVE!

So, this past month...I had no luck with my family doctor, so I asked to switch to another doctor. I started the process, and my the Kulpmont office faxed my records to who was supposed to be my new doctor. Well, for whatever reason, the records were entirely out of order, and the first page was from August!? Why!? Well, it was a bad part of my medical life, before I was diagnosed with Gastroparesis and was in and out of ERs constantly. I was given Morphine during these visits, and during one of them, I was given a script for 5mg oxycodone. Based on this, I was written off as a drug-seeker (mind you...I haven't been prescribed any narcotic-type medications since August.) And now have no provider. I have no way of getting scripts, as my former doctor's office changed my provider on file immediately upon my requesting to transfer. They claim insist it's his job to write my scripts, despite my informing them of the problem. I have a patient advocate, and a nurse case manager now, through Geisinger and Access Plus respectively. My case manager can't do anything until I get a doctor, and is completely unhelpful in finding me a doctor outside of the Geisinger...and my advocate won't admit to any wrongdoing on Geisinger's part. I have been told to go to the ER any time I have any issues, ignored when I've asked for blood tests, and been denied scripts for my medication with no actual reason. I've had enough. I'm getting nowhere. Joey's also realized that his lack of luck in getting a job in NC so far is due to not being down there to interview, so we're speeding up the original moving plan by a month. We're packing up now and getting ready to move now, though he's planning to stay back for a little while so we have some sort of income to get set up with.
Gastroparesis isn't too bad, other than the bloating aspect. It's there, I have pain and fullness and other issues, but they're more IBS-like other than the bloating. It's just tolerable right now. What isn't tolerable is the pain. Last week I went to the ER with the worst head-pain and pressure of my life, and they ran a TSH (though I requested a complete thyroid panel...) and compared to a TSH and T4 from November, the TSH is lower now, and the T4 was low then. I'm suspecting there may be a pituitary involvement, and upon questioning my family, there's a family history of pituitary problems. So I need to make sure to note this for my future endocrinologist.

I'm excited, I'm tired, I'm hopeful and I have a plan. This is good.
In part of my studying what other home-makers and mothers are doing, I've set up a family home management binder with some good information in it. I have a better way of grocery shopping and organizing my housekeeping, and I'm really happy about it.

This is all I have for now. Joey and I are doing super well, we're learning to communicate better, and I am so grateful to have him in my life. He is truly the best partner I could ask for.

Tuesday, February 21, 2012

Tonight we went to Walmart to get Cori a new pair of shoes, because her toes almost touched the end of her old pair of shoes. We got her a pair of Hello Kitty sneakers, and saw some Hello Kitty micro fleece in the fabric section. I bought two yards of it and am going to make her a blanket tonight ^_^

Also, Joe and I are engaged!!! Woo!

Sunday, February 19, 2012

We're Engaged!!

On Valentine's day, outside in the rain, Joey asked me to marry him!! I've been on cloud nine, and have been channeling this joy into our wedding website.

Sunday, February 12, 2012

One hour left to enter! Check out this site, and enter to win!

So I'm learning that I'm not the greatest at blogging, but mainly because life is in a strange place. I have a lot that will hopefully be happening soon, for the better. And at the same time I feel like nothing major is really happening. I did finally receive my prescription for Domperidone on Tuesday, and so far other than being gassy, there's no real change yet. Fibro/peripheral neuropathy is fairly rough, but it's been worse since my kiddo partially dislocated my right shoulder. I should probably go to the doctor for it, but I really am sick of going to the ER. I don't want to drag my daughter there, and I don't want to be given some pain killers and sent home. It's a waste of time. I'm already in a state of flux between apathy and passion and I don't need to fuel the apathy more.

I have started working on another project. I finally taught myself how to use a knitting loom and by the end of the week, my guy should have a nice new alpaca scarf for himself.

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.