Quilting Mends the Soul - Priorities

Errrrrgh! A little stressed this morning!

I just have too much to do and not enough time to get it done!

I have orders to get out, I have refunds and payments to do, and follow up on outstanding orders from suppliers, a living room to clean up from cutting, sewing, and binding this weekend, as well as a floor to mop due to the flour bucket falling out of the pantry and popping open. Oh and laundry, dinner, and on and on and on.

But the worst is the 3.5 hour drive one way for a Doctor appointment tomorrow morning at University of Michigan Medical Center - Cardiovascular center which will be repeated for the next several weeks!

I can do it all I am sure at some point, but this is where Prioritizing comes into play!

When we have a chronic illness we have to prioritize our days, weeks and months. It is a must! Not all things will get done at once!

HEY! They did NOT build Rome in a day as they say. I don't live in Rome for sure, nor do I want too.

I love where I live, but I woke this morning at 0500 with Asthma issues and I was sleeping so good too, but then the damned wheeze woke me, had to get up fumble for my inhalers and wait for it start working. Then of course it was coughing whatever was in my lungs in the first place. A lot has to do with humidity right now. I so long for fall days to get here and just stay, I am happiest in those days before winter.

Sew back to priorities. If you work BLESS YOU! I have not worked since 12/08/2015 it was hard at first knowing my illness took away my love for what I did. Nursing and Geriatric Social Work - I LOVED IT! But the stress just got too much for me and I was in and out of the hospital so much my doctors gave me no choice! I had to quit or die as they put it!

I chose to live - FIRST PRIORITY!

Then it was depression after only a couple of weeks, that lasted for some time SO Zoloft became my friend to help with my OCD and the depression, it works I still take it! PRIORITY #2!

Then, I thought there has to be something I can do to supplement what I lost in income, and that was fabric - I thought about what I loved and it was fabrics and sewing and creating. Priority #3! HOW DO I DO THIS?

It was not easy, it was slow and it was arduous, and I had to live on what little savings I had until my Disability came into affect, which by the way is a pittance of what I made in my job! Seriously I was in shock! PRIORITY #4! Figure out living and making it, while LIVING!

There are so many things in our lives that change when we have a chronic illness. The one thing that was a major adjustment for me was the thought I never I MEAN NEVER will be going back to work EVER! It was daunting, and it was depressing and I was pissed off for sure. I never did the why me thing. Why? Because I was born with what I have, nothing did this to me but my own body.

PRIORITY #5 - Get over it and move on. Accept the things which one can not change. etc. etc. It is not easy for sure, but it is necessary or you will just become more sick in the long run.

Okay so I got to the point I realized I am done! NOW WHAT! And then embarked on a journey to learn what I could and could not do each day. Let me tell you it was more than I thought as my disease progressed rapidly for several months. I was at the doctors or hospital more than I was at home, it was even more depressing, but I asked for the good stuff to help me cope and I got. I am the worst patient for sure. I am a nurse after all and a nursing supervisor on top of it. Talk about pain in the ass. But the funny thing is; now it is in my chart so all my nurses KNOW do not "f" it up! "He will rip you a new one for sure" is how I overheard one nurse tell another during shift change. I call them exact teaching moments, even though it can be harsh, do your job and do it well. I am not just a body I am human damn it and you better do things right, because well shit, I was in the same position and did everything I could to make it right every day I worked! And I did not want to get something from a stupid mistake!

PRIORITY #6 - be diligent in your own health care! It is imperative!

You are responsible for you, and you must journal your treatments, what works what does not. Keep a list of medications with you at all times, and for GOD'S Sake keep a list of what medications you are allergic to as well. I was just told yesterday Insurance is not paying for my Renexa which controls my Angina, they want me to switch to Amlodipine! I AM ALLERGIC TO IT! So at some point I have to call the the dumb asses who make these decisions based on money to tell them they are idiots of course! Try and make me take something and kill me, and see how fast I call an attorney! I have one on speed dial actually, funny when I give that information out, they seem to approve thing's much faster, except I am screwed if they do not do it before I run out this week! It is an uphill battle always with a chronic illness and pharmaceuticals. I have one med I have to pay for every month. BUT here is a secret or two:
Good RX - it helps you to find the lowest prices on every drug out there and tells you where to go and you print the coupon.
HealthWarehouse.com Now this is where I get the medication insurance has not paid for ever! Even with Good RX it runs anywhere from 1500.00 to 3800.00 a month who the hell can afford that! I found this little place out of Kentucky and it cost me $54.95 a month!!!! What the hell? How is this possible? I know right I am saying the same thing you are. Those f'ers are over charging at pharmacy for sure!

PRIORITY #7! Keep up on your cost if your insurance is not paying 100% or if you do not have insurance at the moment. Right it all off on your taxes!!!!

For those of you waiting for decisions on disability, get your doctors to conference, and send the letter to Social Security!!! That is how I was approved in 2 weeks after being denied several times before. My U of M doctors actually did it without me knowing, and was surprised when my approval letter came, right after I did all the paper work for it. For those who are scared of the process there are people out there who help for free in your area - Area Agency on Aging is one that comes to mind, they are a good referral service for many things. Look them up for your state!



Take care of you. Know your limits and stick to them, and do not feel bad about it. That list at the beginning here. WILL NOT GET DONE TODAY!

Hell, I bet I end up sewing most of the day after I do get some orders ready for shipping. That is a job yes, but it is playing with fabric and reminds me of what is in the studio and store, and I can tell if something is selling well or not. Then I figure out the coupon codes for the month and get sales Generated again. I need to move inventory to get inventory.


I barely charge just over the wholesale prices. I am not out to be RICH, but I am in love with fabric, and with the new taxes coming in to play soon, I will continue to provide the best quality and the best price I can so that we chronic's can enjoy what we love, and that is creating. NOW if they touch Social Security I hope the Boston Tea Party repeats on the White House!!! I will call it the Party of the Fabric Hoarders! YEP! I am not political, but we paid that insurance, and it is ours, if they want it, well they will have to fight for it! Here that is my rant! I just don't do that, but I am reading too much on taxes, and taking and not giving or caring!

Priority #9 ! YOU!

Take responsibility for your health always. Never let anyone tell you anything different, and if a doctor placates you, find a new one. Ask around, join support groups and find who is best in the field you need. I was asked the other day at my VERY LONG Rheumatology appointment to speak at her support group meeting. I will once I am done with all this heart stuff at U of M at least the major stuff.


Priority #10 - YOU!

Take care of you, when you are tired, fatigued, stressed, anxious, so full of pain you want to cut the area off, and cuss out the world. Do what you need too for sure. CUSSING well that is up to you, I like colorful words and phrases that I make up with a litany of words just to rant out and get it out. I do get frustrated and angry; and that is okay too. I am so sick of pills DAMN I take A LOT of pills with A LOT of side effects, and am so sick of them I could just hurl - and do sometimes when they react or I develop a new allergy! I can take something for weeks or months then develop and allergy. YEP Lupus will do that for you, your immune system after all is what controls the LUPUS and the LUPUS controls you and the Flares control you and you just keep going in circles. So I say "F" the circle I want to be a square today, and I go way out of the box!


Make time for yourselves - "me time". That for me is sewing or cutting or just looking at patterns to try and figure them out! Or I hand embroidery that is for really bad days though, when I am too tired to think, I do not have to think to do hand embroidery.

DO NOT FEEL GUILTY for taking time for you and letting the house work go, or dinner be late or ordered in, or the dishes just not done.

I do it all the time. The one thing I can not let go is garbage; don't like to smell it, so it goes out at least to the porch if I can not make it out the can. And the better half see's it and knows it is a bad day. Funny how little things after so long are the way others know you are NOT having a good day. I like that about mine, just knowing that fact is a relief at times, it means I won't be bothered and or asked why is dinner not there, or how come the house is a mess etc., etc. For those of you who do not have this yet, it will come if your new to chronic illness; it is a time thing. Once you and those who surround you know what is happening and it is not you GOING CRaZEEEE, it gets better on this end. YOU ARE NOT CRAZY - You ARE ill. Simple and fact.

God for bid the person who tells me its all in my head, they will not have one left when I am done, because I am going to blast them to next week with information! Then politely ask them to get out of my life if they can not support me and my health issues.

PRIORITY # 12 - YOU and WHO surrounds YOU!

You must make sure you have people around you who support you, and do not berate you for the changes that come along with a chronic illness. It is imperative to get those who do not out of your life, and do not try to make them understand. Well, of course if it is your other half, knock em' up side the head and tell them to shut the hell up and leave you alone ;(NOT CONDONING ABUSE HERE) [figuratively do this]. Once they get this a few times, it will change. You are going to have mood swings FROM HELL! Dante's Inferno has nothing on me in this department. I can go from 0 to 180 in 2.3 nano seconds. No reason other than it takes over and I have to get it out. I usually use the pillow method, but for those in my path at that exact moment, Well let's just say I do apologize at some point. Usually a day or so after, I let it sink in to not mess with me during a flare or when I am not dealing with life that day. They get the gist after a few rants and raves. It is imperative to have a good support system is what I am saying here.

Priority #13 - YOU do NOT feel Guilty!

I have been here done this; "I need to do my share"; "I need to contribute to society"; "I need to do what I went to school for"; (FOR MANY YEARS) thankfully my student loans were forgiven or I would be in storm of shite for the rest of my life!

When you feel guilty over not doing, well let's just say it makes things much worse!

I have known people who are perfectly fine and DO NOTHING and FEEL FINE ABOUT being a slave to the system, because that is what they wanted, to get something for nothing. I did everything I could to keep working as long as I could and them well hell they just worked the system, used to make me so mad, well it still does. BUT! I do not care as much anymore cause "it ain't a gonna change" as my mamma would say!

Seriously though, do not feel guilty over cancelling plans or being so tired you just can not go to a kids game or show. It is the reality of chronic illness. I am still working on this as well, it can be a long journey to get passed not being a part of society, but I have made my home mine, and it is where I am most comfortable for sure;.

PRIORITY # 14 Make your space yours and as comfortable as possible.

Keep your chin up and move on. Know you are supported and that you will have good and bad days. Prioritize the important stuff and put off what can wait, it will still be there when you get to it. NOW I am not saying let your home become an episode of "Hoarders" (I do watch this show from time to time to get motivated), not that I have EVER come close to that, but it does make my fluffy butt get up and pick things up and straighten or just dust off a few things. I do it in time, I take my time and it may take all day to get just a few things done, but if I put it on my "To DO List" it will get crossed off at some point.

I have never planted seeds on my coffee table and had them grow!

That is it for today! I hope you enjoy this and get some relief as well, I hope you laughed a little and I hope you joy in your creating. I will be in bed early as I have an 0300 appointment with the highway across state in the morning to be on time for my appointment I just know I am going to hit traffic from hell on a Monday that early. So If I sit in the parking garage I may nap and set my alarm on my phone and I am good with that, or I may go in to the lobby and embroider or hang out on my iPad. Who knows I will let my body do the deciding for sure. Wish me luck! I may have a rant post this week! - hahahaha.

Take care.



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