Quilting Mends The Soul Day 2

Yep, it's 0114 Saturday morning - I AM AWAKE!

So, do you all know an Autoimmune Disease is?


"Autoimmune disease affects up to 50 million Americans, according to the American Autoimmune Related Diseases Association (AARDA). An autoimmune disease develops when your immune system, which defends your body against disease, decides your healthy cells are foreign. As a result, your immune system attacks healthy cells".


"There are as many as 80 types of autoimmune diseases. Many of them have similar symptoms, which makes them very difficult to diagnose. It’s also possible to have more than one at the same time. Autoimmune diseases usually fluctuate between periods of remission (little or no symptoms) and flare-ups (worsening symptoms). Currently, treatment for autoimmune diseases focuses on relieving symptoms because there is no curative therapy".

Yep that is right my body attacks itself and tries to kill it - much like white cells attack an infection. My body thinks it is one GIANT infection.

The following are some of the more common autoimmune diseases:
rheumatoid arthritis: inflammation of joints and surrounding tissues
systemic lupus erythematosus: affects skin, joints, kidneys, brain, and other organs
celiac sprue disease: a reaction to gluten (found in wheat, rye, and barley) that causes damage to the lining of the small intestine
pernicious anemia: decrease in red blood cells caused by inability to absorb vitamin B-12
vitiligo: white patches on the skin caused by loss of pigment
scleroderma: a connective tissue disease that causes changes in skin, blood vessels, muscles, and internal organs
psoriasis: a skin condition that causes redness and irritation as well as thick, flaky, silver-white patches.

Well, that list there I have 5 of those most common ones. My worst by far are Systemic Lupus and Scleroderma. Saying it causes inflammation - well that is an understatement.

TRY I AM ON FREAKING FIRE - from the inside out.

Currently the SLE has gotten my skin, lungs, heart, and colon as well the scleroderma decided- HEY IT's A FREAKING PARTY - let's go and really mess with this guy! A**wipes!

What I am guessing is that you did not realize Rheumatoid Arthritis is an Autoimmune disorder, most think its genetics. It can be just that - however they still are not sure of what causes these wonderful little additives to our lives. All I know is it can be taken back by whoever gave it to me if it is!

"Causes - The cause of autoimmune disease is unknown. There are many theories about what triggers autoimmune diseases, including":
bacteria or virus
drugs
chemical irritants
environmental irritants



"Diagnosis - Because there are so many different types of autoimmune disease, the symptoms vary. However, common symptoms are fatigue, fever, and general malaise (feeling ill). Symptoms worsen during flare-ups and lessen during remission. Autoimmune diseases affect many parts of the body. The most common organs and tissue affected are":
joints
muscles
skin
red blood cells
blood vessels
connective tissue
endocrine glands

Remember I said I went to a crap ton of doctors - well I was not kidding at one point I think I had at least 11 at any given time - I hated "ologist" anything ending in that I hated with a freaking passion. I was young I was supposed to go on to great things, and then you hear all this BS of "it could be this or that, we are not sure or well let's try this". You just want to say "screw it; I am done". But we did not, we persevered, and found a doctor who was willing to go the extra mile. THANK GOD! My parents had good health insurance at the time. We won't even go into later in life and "we do not cover pre existing conditions" - because well we just won't!

"How are autoimmune diseases treated? Autoimmune diseases are chronic conditions with no cure. Treatment involves attempts to control the process of the disease and to decrease the symptoms, especially during flare-ups. The following is a list of things you can do to alleviate the symptoms of an autoimmune disease":
eat a balanced and healthy diet
exercise regularly
get plenty of rest
take vitamin supplements
decrease stress
limit sun exposure
avoid any known triggers of flare-ups

Yeah Yeah yeah, eat this and not that, do this and not that, reduce your stress and do this. How bout go take a long walk off a short pier instead - (insert very very colorful words hear). The one that got me the most - "get plenty of rest" - really and I do this how when I have bills to pay and work to go to and things in life that need attention - SERIOUSLY "You gonna pay my bills and clean my house"? Of course not, and lets not even go into even though Lupus is the NUMBER ONE reason for disability I was denied more times than I can count.

Who do I go to for this little life long friend?

Rheumatologist - Another "Ologist" but I like mine she is amazing - BUT getting a referral and getting an appointment right away...

Forgetaboutit! say that with an accent....

What do we do at this little gem of a place?

We talk, we think, we look and play show and tell. What I forgot to tell you after the first 8 years of this crap - I was also diagnosed with CREST, Raynauds and Sjogrens too.

Yep just bang my already aching head against a broken glass filled concrete wall while you are at it.

What do all those mean?

PAIN! Period PAIN PAIN PAIN!

Oh lets not forget half the time I look like Barney's cousin when I turn my wonderful shades of purple and blue and gain weight due to a steroid (prednisone) burst. (That is when you start on 100 mg a day and taper back to your regular dose in a period of about 5 to 10 days).

Crest is this: "CREST syndrome, also known as the limited cutaneous form of systemic sclerosis is a multi-system connective tissue disorder. The acronym "CREST" refers to the five main features: calcinosis, Raynaud's phenomenon, esophageal dysmotility, sclerodactyly, and telangiectasia. It is associated with detectable antibodies against centromeres, and usually spares the kidneys. If the lungs are involved, it is usually in the form of pulmonary arterial hypertension".

See that last line there?

Pulmonary arterial hypertension - YOU GUESSED RIGHT! I have that too! I am a walking text book at University of Michigan Health Centers - its nice to be liked, but not for your diagnosis and what you can teach!



A little media here, practicing my puter skills!

So. What does this mean? Well...

C - hardening of my skin especially my face - thus no selfies with smiles! AND my mouth is shrinking (could be a good thing for those who are tired of me talking too much - not so good a diet plan though).

R - BARNEY's cousin appears when I am stressed, cold, or hot or well hell let's face anytime it damn well pleases!

E - ahhh good old GERD and my throat closes when I am eating or breathing for no apparent reason other that well EXCITEMENT during a meal!

S - This little biotch makes the tips of my fingers come off (digital ulceration). A LOT OF NERVE PAIN! Messes with my quilting mojo too! They too are A**wipes!

T - Whelp this one really keeps me from selfie moments, the pic you have seen of me is touched up. In real life I have read blister looking things on my face, neck, chest and arms. They are collections of capillaries that have burst in and form little pocks on top of my skin that will continually worsen and become a BIG red patch! Yep Barney and Fog Horn Leg Horn all rolled into one! NICE!

Scleroderma is a form of this as well, except mine decided my heart and lungs looked like a really good place to take a hiatus! Yep it sucks, but you know what its all in the attitude you have!

Okay I am over the information part here! Its depressing as hell, where did I put those happy pills again?

What are my happy pills you ask?

Well let me tell you - Lyrica SING IT LOUD AND PROUD LYYYYYYYRRRRRRIIICCCCAAAAAAA - -my best friend which I discovered quite by accident when I had an outbreak of shingles last year. Nurse mode I caught it the day it broke the skin and started itching, so I went through it like a champ even went on a "FART" (fabric acquisition road trip) to North Carolina!

It does help me with the nerve pain - I think it really is for Fibromyalgia which I thankfully do not have! OH MY GURD one thing I don't have!

Sew, here is the good part. When I am in a flare of one or more things I do a couple of things:
I imagine myself creating thousands of works of arts in my head
I sleep A LOT!

It is important when you have an Autoimmune Disorder to recognize it, and know when it is coming to get you! PAY ATTENTION to your body!

Now as for me being awake - Even though the other two happy pills (xanax and zoloft) are on board. New moon! YEP - those of us with AD's need to pay attention to lunar cycles, barometric pressure changes and weather changes too.

I take a great number of pills a day for sure. But I stitch a hell of a lot more stitches than I swallow those damn things!

Here is the secret secret - Push through it if you can, get yourself prepared and know your limits. If all fails - pet the fabrics you have, imagine in your head what you will make with them, divert your mind!

Out look on your life can be gloomy, but if you have the right attitude you can get past it! Oh and get yourself a few colorful words too! Those can make a day for you! Face pillow screaming well hell that is a given - (Just remember to remove said pillow between screams and take a breath)!

Hell at 19 I was told I would be in a wheel chair by the age of 21, HELLO I will be 50 January 2019 and I still shimmy my fluffy butt across a parking lot the rain! I still get wet, but I did it on my own two legs and feet (wearing comfortable shoes of course).

Oh had to shuffle my fluffy butt the potty - Lasix kicked in!

Even though I may feel like crap - Quilting or the thought of creating a new one always helps me get past it. I can be down for days - at home or hospital. BUT I always have a pad with me, or iPad to look at quilts. I created QPI for that, it is a real diversion for me unless I am on the good stuff (pain meds) and just go to sleep with thoughts of me being the next Jimmy (jenny) Doan~!

The key to living with all these "warts" on my mojo - positive attitude.

I can tell you I can be a walking raving lunatic some days. I can have a million ideas in my head at once. Hell, I am pretty sure I thought of the "World Peace" dilemma cure - but then I heard this weird plop and the damn thing fell right outta my head on to the floor and died right there, no five second rule nothing, just poof dead gone. So therefore No World Peace at the moment! But I know I thought of it and how it would work!

Hey don't judge we all have our moments!

Sew for real. Do what I do - Make light of it, take it one day or one hour at a time and if this fails and petting fabric just isn't doing it for you. SLEEP!

If you are suffering like I have, and no relief - Find a doctor who listen's number one. One who will not judge and make excuses to you about how addicting some medications like xanax, Lyrica, or Zoloft can be. HELLO You are in pain, you need to rest and you need help to do that! Don't script shop by any means there is a real list for those who do that, and you can go to jail without the get out free card!

My point for those of us who suffer from all the (80) to be exact Autoimmune Disorders, is this. It is real, it does hurt, it does make you wanna kill someone at times, It makes you hard to deal with, it ruins your life, and you will think your better off out of this world.

TRUTH - there is hope! I will help you find what you need resource wise if you need it.

I will continue to involve you in my journey - and GOD forbid any Panic attacks along the way! I will touch on that tomorrow since so many asked me how I deal with it. I am wrapping the pee pods around that now, and I can hear some rattling in the old noggin' on what to say.

I have been multi tasking this entire time with shipping and printing orders to go out to you that have them. DIVERSION on the way - Your welcome!

Until tomorrow - remember there is hope, there is a place to go when you need to and I will make you laugh whether you want to or not - just not in person (I don't like to real time people).

So get your cuppa and relax (what ever that cuppa is). I will be here, and I hope you are too.

Long winded and wide awake - Not a good combination!

Oh Maybe I will have a Carrie moment and my blog will be a book some day! We can all wish! I do have curly hair, but alas I am too fluffy to wear a tutu in public while looking at my billboard on the side of the bus...

Peace - Keep that faith!

T

(reference soucrce) - don't hate me on my citation I did enough of that crap in college to even think about it now!

AARD 2018 - http://www.healthline.com/health/autoimmune-disorders#Overview1, Autoimmune Diseases List: Causes, Symptoms, Types & Treatment

https://medlineplus.gov/ency/imagepages/19507.html