Quilting Mends the Soul - You are Your own Worst Enemy!

Boy oh Boy! Let me tell you! I am my worst enemy for sure! I think to myself all the time, that I need to do this or do that but I just don't get up and do it. I should know better unless I am in a real serious flare.

Being a retired geriatric nurse I know better than to just sit around or lie in bed as I have done for a couple of days just vegging out. I mean I have gotten up to cook, bathroom, shower etc., but actually doing something. NO! I did a little here and a little there, but not enough to keep my circulation going. That is just wrong of me to do! I know that, but like I said I am my own worst enemy.

It goes both ways, there are days I know I should just lay around, rest or nap and I do not. It is a vicious cycle for sure.

Now let me tell you, yesterday my left arm and pectoral muscle was killing me. I know what it is from too. When you have an ICD (Implanted Cardiac Device) which can be either or a pace maker, defibrillator, or both (which is what I have) you are not supposed to lift your left arm up for long periods of time due to muscle strain, pulling on the lead that goes to your heart etc., and I have a lot of scar tissue connected to mine so it is worse. But, on Tuesday I had my left arm over my head for a very long time for those test, which were one after the other for over an hour by the time I put my arm down, I could not feel my left hand at all. Then yesterday it caught up with me for sure, it was a doozy too! I do not have pain meds at all. I don't like them and do not take them unless necessary! So I did the massage and all that, took most of the day for it to finally relax. Then I did sew and let me tell you, getting those creative juices flowing helped to take my mind off things for sure. I had one of my favorite cd's in as well which always helps!

I hoped to write yesterday, but no left hand feeling kind of inhibits that, as today I am writing and have to stop every so often to let my hand rest and my wrist, it is all do to the ICD and I think it may be against a nerve in there! We will soon find out I am sure.

Sew, what do we do when we are our own worst enemy?

Realize it and work on it. Let yourself awareness take over. It is imperative no matter how bad we feel, that we get up and move around. We do not want blood clots forming, nor do we want our muscles to become weaker than they already are for many of us. Getting up and going to the bathroom is NOT enough. We need to do some stretching at least, and get up and walk in place for a bit, just to get the blood flowing and back to a regular viscosity.

Take your meds on time, following the directions and ask for help when you need it. Your Pharmacist is the first place to go as they are more knowledgeable than most doctors on the meds prescribed. Also, there are Doctors who only do medication reviews that are called Pharmacologist, they are the ones who can tell if you have meds that are contraindicated and will scribe new ones if so. You can always ask for a referral to one if you think you are having medications counteract or react to one another.

I remember my Dad who passed today 9 years ago, who had to take a Benedryl in order to take a heart med he was on. I just don't think that is normal. I said the whole time he was doing it as well. As Benedryl has dyphenhydramine in it and can cause drowsiness and fatigue. But, he was okay with it, until the end when he just could not breath on his own anymore. He passed from complications of Myasthenia Gravis and Lung Cancer.
This is a neuromuscular disorder.

Extremely rare (Fewer than 1,000 cases per year in US)

Diagnosis often requires lab test or imaging

No known cure, treatments available

Can last several years or be lifelong
It causes weakness in the voluntary skeletal muscles. Muscle weakness occurs due to breakdown of communication signals between nerves and muscles. Symptoms include weakness in arms, legs, drooping of mouth and eyelids, difficulty in speech, swallowing etc. There is no cure but treatment helps manage the symptoms. (Medline 2018).

My dad's form affected his lung function, so he spent several weeks on a ventilator before he made the decision to end it. Just do nothing until the end. I was there, and after life support was turned off, it literally was less that 20 minutes before he took his last breath. And yes, that line from Steel Magnolia's is true. It was so quiet, and he drifted off. It looked as if he was talking to someone in front of him, which I was standing at the end of the bed, but I know it was not me. It was more like his eyes were looking up above my head - so I think it was my Grandparents and his best friend and my uncle who passed before him. At least that is what I want to remember and believe.

Many have asked about certain things to me if it is considered a form of Auto Immune Disorder. So here is a list as of today of what is considered an Auto Immune Disorder. Never confuse this with Auto Immune Deficiency that is a whole other animal and will get you a lot of Looks, and runnin away as people are not educated on that topic still today.

A list of the most common disorders: There are approximately 80 that are known:


Rheumatoid arthritis. The immune system produces antibodies that attach to the linings of joints. Immune system cells then attack the joints, causing inflammation, swelling, and pain. If untreated, rheumatoid arthritis causes gradually causes permanent joint damage. Treatments for rheumatoid arthritis can include various oral or injectable medications that reduce immune system over activity.
Systemic lupus erythematosus (lupus). People with lupus develop autoimmune antibodies that can attach to tissues throughout the body. The joints, lungs, blood cells, nerves, and kidneys are commonly affected in lupus. Treatment often requires daily oral prednisone, a steroid that reduces immune system function.
Inflammatory bowel disease (IBD). The immune system attacks the lining of the intestines, causing episodes of diarrhea, rectal bleeding, urgent bowel movements, abdominal pain, fever, and weight loss. Ulcerative colitis and Crohn's disease are the two major forms of IBD. Oral and injected immune-suppressing medicines can treat IBD.
Multiple sclerosis (MS). The immune system attacks nerve cells, causing symptoms that can include pain, blindness, weakness, poor coordination, and muscle spasms. Various medicines that suppress the immune system can be used to treat multiple sclerosis.
Type 1 diabetes mellitus. Immune system antibodies attack and destroy insulin-producing cells in the pancreas. By young adulthood, people with type 1 diabetesrequire insulin injections to survive.
Guillain-Barre syndrome. The immune system attacks the nerves controlling muscles in the legs and sometimes the arms and upper body. Weakness results, which can sometimes be severe. Filtering the blood with a procedure called plasmapheresis is the main treatment for Guillain-Barre syndrome.
Chronic inflammatory demyelinating polyneuropathy. Similar to Guillian-Barre, the immune system also attacks the nerves in CIDP, but symptoms last much longer. About 30% of patients can become confined to a wheelchair if not diagnosed and treated early. Treatment for CIDP and GBS are essentially the same.
Psoriasis. In psoriasis, overactive immune system blood cells called T-cells collect in the skin. The immune system activity stimulates skin cells to reproduce rapidly, producing silvery, scaly plaques on the skin.
Graves' disease. The immune system produces antibodies that stimulate the thyroidgland to release excess amounts of thyroid hormone into the blood (hyperthyroidism). Symptoms of Graves' disease can include bulging eyes as well as weight loss, nervousness, irritability, rapid heart rate, weakness, and brittle hair. Destruction or removal of the thyroid gland, using medicines or surgery, is usually required to treat Graves' disease.
Hashimoto's thyroiditis. Antibodies produced by the immune system attack the thyroid gland, slowly destroying the cells that produce thyroid hormone. Low levels of thyroid hormone develop (hypothyroidism), usually over months to years. Symptoms include fatigue, constipation, weight gain, depression, dry skin, and sensitivity to cold. Taking a daily oral synthetic thyroid hormone pill restores normal body functions.
Myasthenia gravis. Antibodies bind to nerves and make them unable to stimulate muscles properly. Weakness that gets worse with activity is the main symptom of myasthenia gravis. Mestinon (pyridostigmine) is the main medicine used to treat myasthenia gravis.
Vasculitis. The immune system attacks and damages blood vessels in this group of autoimmune diseases. Vasculitis can affect any organ, so symptoms vary widely and can occur almost anywhere in the body. Treatment includes reducing immune system activity, usually with prednisone or another corticosteroid.
(WebMD Medical Reference Reviewed by Jennifer Robinson, MD on August 14, 2018).

The blue links will take you to more information from there!

To combat my enemy today, I did little things like hang up some laundry while sitting in the floor, not very hard to do. I did vacuum which tires me out for sure, that was before I sat down to write today. I will also do some order cutting today, and then sew later in the evening. Once again, I can not stress the TO DO LIST - do the things on the list you can that day, keep crossing off, adding others as you can and do them as you can, do small stuff on bad days - remember we need to move, keep our muscle memory and elasticity going, as well as hydrate those muscles.

Be vigilant with yourself! Do not let your enemy win this fight, but fight it with all your might.

Quilting has meneded my soul for sure! I felt so much better sitting down at my machine and making something, not done yet most likely will be a couple of weeks for sure. I have too many projects going, and not enough hands to get them done. It is a new moon cycle as well which affects me terribly! But I am up and breathing today, that is a good day. Pain level is low, and I hope to keep it that way!

Until next time - Be creative, be vigilant and most of all take care.

OH one thing I totally forgotten about. If you have a respiratory issue NEVER clean your liter pan for your kitties! That is not good for you! EVER!

T