Alayon Inspiration

Immunity Long Road to Recovery

I will be the first one to admit that maybe staying home to avoid Covid was good for me. My doctors have stated that my labs have been the best ever.

Endocrinologist even stated that when he met me 6 years ago my adrenal glands and hypothalamus had shut down. They are now both functioning after 5 years.

Let me be honest. This has been 5 years of trying different vitamins, adjusting food intakes, dietary accommodations and re-arranging my life down to every day, hour and minute. If something made me feel bad, try doing less, not doing it or finding an alternative. This applied to food, exercise, errands, sleep, pillows, equipment, ADA accommodations and clothing.

If you have been recently diagnosed with an auto immune condition, please do the following….

Educate yourself. Find out how it affects you physically and mentally.
Try different therapies. I added complimentary therapies, changed diet, yoga and massage in addition to my medications.
Do communicate with the Doctor(s) about ANY side effects of the medications that may be prescribed.
Stay in communication regularly with the Doctor(s) about any new symptoms.
Keep a journal for at least the first year. Log how you feel each day, what you eat and exercise. It helps you find a correlation between symptoms and reactions to daily activities.
File for ADA accommodations at your work. JAN network is a great resource. Your company may have a disability office to do this with.
Realize that your life will never be “normal”. It will always be different each and every day. Thank God every morning you open your eyes whether you are suffering or not.
Remember that it is okay to ask for help. It is also okay to stretch yourself to stay active.

Most of all, start your day of with God. Read the Bible, pray and meditate. Know that when He limits you, there is a better purpose ahead.

I know that this journey is not even close to being done.

No Double Standards to be a Victim

I wanted to take the time to share with something I recently had to experience. I was receiving death threats from a past student. It was frustrating. I knew who it was. I was able to verify the person with a little bit of detective work. I filed a police report after the first death threat. Filed an addendum with the second death threat. I was informed by the police, school resource officer and my supervisors that nothing was going to be done because the young adult was special education. The person continued to call. I got frustrated. I filed another police report. I was continually being told nothing could be done because he was special ed. I refused to allow this double standard because of being “special”. Mr. Cruz from MSD was “special” and look what he did.

Parents have fought for their special education children to have extra rights, yet be treated as normal. Except when they get in trouble. I refuse to allow that to be the excuse for this young adult’s behavior.

Finally after talking to a friend, I was given the guidance to file a restraining order. Now, this takes some preparation. I had to take the recordings of the death threats and transcribe them into a document. Transfer the threats to my computer so that they could be used if the judge allowed the order. Fill out a 3 page form before even going to the court house. I had copies of the police reports.

Next, go the court house and plan to spend 2 to 4 hours to process the request for the order. Go with something to read and a sweater. With Covid, this was even more challenging. You will need the intake form mentioned above and any proof of the threat. It is done through the domestic violence unit. The intake clerk was kind and helped me process everything. The judged signed immediately for the temporary injunction.

Next came the court date done via virtual platform. I had such a nervous stomach. The meeting was done via Zoom. It was scary. I understand why victims refuse to testify. Even though I was not on trial, it was distressing to have to listen all the recordings again in front of those in court in attendance on Zoom.

The judge ordered a permanent injunction be filed. The young adult is not allowed to call, email, social media or show up in person at my home, work and any future home.

I received the permanent order in the mail. I made a copy of the first page and keep it on me. Just in case.

What has this done besides inconvenience me? It gives me peace of mind. It was a hassle, a fight for justice, and even scary.

I am sharing this because you don’t have to put up with being a victim because the rest of the world thinks that person is protected. There are laws. Even those with special issues have to follow them. Parents, please be strong with your children. Do not allow bad behavior “just because they are special”.

Masking About

Well, time has come to return to work. I am ready. But, I have to admit that wearing a mask all day is daunting to me. I already have breathing problems, then add oxygen hoses and a pair of glasses to the mask bands. This makes for a sore ear. I have enough masks to use two a day. I have purchased more scrubs to be able to wear pretty clothes that can handle hot washes. (I got the idea from an article about Texas teachers returning to the classroom wearing scrubs.) I have antiseptic sprays for my office and home. I will also have a clear plastic barrier for the front of my desk.

Let’s get back to the masks. I find them very hot. My face has great skin now from the cleansing sweat. It is easier to breath with the oxygen on while wearing the mask. But, it is still hot.

I did recently try to go to a small gathering of people who were supposed to wear masks during a presentation. The seating was set up wonderfully. Everyone was more than 6 feet from each other. But, halfway through the presentation, I looked around. There were several people who had taken their masks off. It was heartbreaking. On one hand I understand the fact that we were all more than 6 feet apart. The con side of the masks being taken off was that the presentation was indoors.

The presenters had the area sanitized immediately as we were walking out. Kudos to the presenters. But, unless everyone keeps their mask on all the time, I will not be going to any presentations until this virus stuff is gone.

I am afraid I am becoming a Mask Shamer.

So, I did some research. I looked up what medical conditions would allow people to not wear masks. There wasn’t really any medical documentation or articles to support the assumption that those with breathing problems should not wear a mask. The basis being that wearing a mask is actually better because it filters the air. I wear a mask when the Air Index Pollution count is moderate and high anyway outdoors. Then, the articles stated that if you have problems breathing, staying at home is better for you anyway.

The bottom line is I wear a mask when outside of my house. At work I will wear my mask. Oxygen will be added if exertion is necessary to do my job. I already wear a mask and my oxygen during my work for a charity. I will just have to make sure that as the mask gets sweaty, it will be changed out to a dry one.

Just beware, if some little old lady gives you a glare because you are not wearing a mask, take the warning. Your life is more precious to everyone around you. You have a circle of influence that will be empty if you get sick and die. You are more precious than a sparrow to God.

I pray everyday for the protection of those I am around frequently. I pray for myself that God will protect me. Each morning I thank Him for allowing me to see another day. Take a reality check and read Revelation.

Article Links:

https://www.wbir.com/article/news/health/coronavirus/who-cant-wear-a-face-mask/51-ecea9b9d-81ab-47a8-bbfc-73d373ec3da9

by Shannon Smith July 2, 2020

https://www.health.com/condition/infectious-diseases/coronavirus/can-you-be-medically-exempt-from-wearing-a-face-mask

by Claire Gillespie June 29, 2020

COVID Update

It has been a while since I have updated you. My last set of labs went very well. Actually, they were the best I have had in 5 years. So, there is a good point to staying at home more often.

I will be honest, I hit a really low point about 3 weeks ago. I felt like my heart was on the ground. I just couldn’t seem to shake it. I realized that I might be suffering from depression. It is understood that my many conditions can cause this, the medication can cause this and also the current economic and virus related scare can cause this reaction. What did I do? Well..

I acknowledged that I was not feeling right.
I reached out to my closest friends and family for assistance.
I reached out for prayer.

It took about three days of sincere praying and coming up with a plan of action to help me out of this well of pity that I had ended in. Three weeks later, I am functioning fine.

Even though staying at home because of the Virus has been good for me health wise, it has not been for me mentally. It is recognized now. I have to remember to keep one hand on the Bible and one hand on staying busy.

In the mean time, knitting a very large project has become my busy work. I have also stepped up to help a charity refit their business for Covid issues. It has helped me keep my secretarial skills honed.

I am scared about returning to work in August. Honestly, I don’t even know how to express myself completely. As a medically fragile employee, I need to make sure that precautions are in place. I was informed that my desk has been measured for a plexi-glass shield which is good news. Then comes the what about the gloves, sanitation wipes, masks, office flow, office capacity, working from home questions, how many days in office, who will supervise parent contact, nursing orders for students when they are in the building for hybrid models, busing for students, etc. It gets really complicated and quite the rabbit hole fast.

Before this current school year ended, I did come up with a guidelines for the office I work in. I tried to use common sense and various guidelines from the CDC and other office related articles. I am sure that the school district will have their own guidelines for office procedure. It will be interesting to see how mine compare to theirs.

I will still continue to wipe down everything each morning. I am hoping that the school system will now provide the supplies for that instead of my wallet. I will wear the masks my sister and I have been making, unless the school provides disposable ones.

I might have to reconsider how my desk is laid out functionality wise. That might mean becoming more organized somehow to get the paperwork off my desk. Maybe a rolling system that I can move around easily for the paperwork I am always needing to have at hand. Something like the below organizer. Since less people will be allowed in my office, I will have room to move it around to have access without cluttering up the desk where the shield will be.

I feel like I am grasping at air for something substantial when there really isn’t anything. What I have decided that would be the most important thing to do is to pray daily to God about my health, work situation, virus protection and safety. When scared, up the communication with God. He has it all under control even when we don’t see anything.

Articles that may be of interest:

https://www.cnn.com/2020/07/07/us/florida-schools-reopen-august-trnd/index.html

M-DCPS Reopening Plan – Special Board Meeting of July 1, 2020 – SP-1 Presentation

The What If Blues

It has been almost 4 weeks with the Stay at Home shutdown of our country. Returning to work seems like a century away. I wanted to take the time to share with you that if you are feeling down, you are not alone.

Unfortunately, Sunday I started down the depression aisle of What If. It took me a few days to get out of that funk. There is just so much uncertainty about work, health, medications and cabin fever.

As a person with immunity issues, going out to the store is whole endeavor now. Now, understand that when I was diagnosed over 3 years ago with my health issues, I had already adjusted my social distancing. I had stopped going to the stores when they were crowded. I stayed away from concerts and any other large gatherings. Now, because I cough uncontrollably and without any warning, I am sure I will be wearing a mask everywhere for the next year.

Back to the What Ifs…

What if…

I have to get tested to return to work?

I test negative for the antigens?

How will I control the social distancing in my small office?

Will they let me return to work with my problems even though I had been wiping down my office every morning previously and will continue?

Will this virus prevent me from getting timely refills of my immunity medications?

Will my spouse drive me crazy?

Will I have to wear a mask in my office all of next year?

Should I wear a mask all of next year even if it isn’t required?

Will I even get to finish the work I left undone? Or will it be back logged to next year?

No one really has answers for all of this. Everyone is winging it.

I got on my knees Sunday and Monday night and prayed for all my acquaintances, friends and family. I didn’t ask God any of the above questions. I know He has an answer. He will reveal each truth in turn and help me do what I need to survive. Each morning He has allowed me to live another day. He has allowed me to help a charity I hadn’t been able to commit more time to in the past.

The biggest part is that I recognized that I was not feeling totally emotionally stable. I admitted it to those around me and continued to push through. I have stayed busy cooking, cutting mask patterns and working for the charity. I am still not to where I like to be cheery and upbeat. But, I am in a better place than Monday.

God has me in his hands. He has all of us in his hands.

A friend sent me the below picture of flowers that were picked at a local farm.

How could you not look at that and smile.

I am grateful to all of you. It is okay to feel blue. Just don’t stay in that color for too long.

Shelter In Place = Retirement/Disability Experiment

Like all of you, I have been home for two weeks now. It looks like the schools will be closed beyond the April 15th timeline that was originally set. I have had the opportunity to do things I haven’t been able to do or experience since I was diagnosed with my multitude of immune disorders. Here are a few things I have learned about myself in the last two weeks that make disability or retirement not so scary for me now.

I was able to clean the apartment. It took 5 days. My husband even helped a little with the vacuum. I used this cleaning activity as a different form of exercise. I did the old fashioned type of mopping on my hands and knees with a rag.

I slept each night without the assistance of any sleep aids or pain killers. In fact, I was able to keep the cpap machine on for an extra hour a night during these last two weeks. I only fell asleep a little later than when I work, sleeping an additional hour. The dog wakes me up.

I was still motivated to do yoga in the morning. I even threw in circuit training once a week.

I used less to no cough syrup during the week. I did not have severe coughing attacks everyday that I normally experience. Less coughing meant less body aches.

My arthritis was not as severe. I even finished a big knitting project. Less pain, less pain killers, less water retention from the pain killers.

I was able to assist with one of my favorite charities. Designing spreadsheets and work flow processes. I haven’t had the time to that before for that charity.

I have gone down to 2 meals a day. A large breakfast and a late lunch or early dinner that was medium size was all that I needed. Less activity, less food needed. I was able to maintain my weight.

I did get a little stir crazy around day 13 when I hadn’t left the apartment complex in a long time. I alleviated it with doing an extra set of circuit training.

What does this have to do with retirement or disability? Honestly, quite a bit. It has been an anxiety of mine to be forced to leave work because of my health in the future. I know now that I will only be little bored. I have enough projects, friends and volunteer opportunities to keep me busy even if I am unable to go about business outside.

I am grateful for God allowing me to experience this with minimal worry about finances. I am also grateful that God has allowed me to help the charity keeping my secretarial skills honed. It will be interesting to see how God guides me through the next set of weeks to come. Keep reading the Bible. It provides peace of mind during this time of unknown economic and health crisis.

Update and Ramblings

I have good news. I saw the pulmonologist this last week. I had been concerned because I have not been feeling very good lately. In fact, I have been in a lot of pain with a lot of coughing. I was concerned my lung function had started to decline. The doctor assured me that I am still stable.

After some diligent research on the Lupus site, Everyday Health and Sjogren’s Foundation, I did find out something interesting. It is normal to have a flare of an auto immune during winter and spring. Why? Well, it seems that unbeknownst to us, our muscles and tendons flex with the movement of the barometric pressure changes that afflict the northern hemisphere during those seasons. So, my increase of pain goes with the fibromyalgia being over stimulated. The extra coughing goes with the lack of rain, increased wind and higher pollution counts. Of course, the cold encourages me to stay in and cease exercising, causing a cascade of stiffness. There you have it.

I have been getting a lot of questions as to my dealings with the Covid 19. Honestly, my routine has not changed. What changed was what I did when I was first diagnosed with Lupus three years ago. I invested in gloves and clorox wipes. I wipe down the main points of contact every morning. Last summer, I upgraded to the hospital strength wipes. I take the time to wipe down the coffee pot handle, fax buttons, telephone, keyboard, mouse, scanner screen, copier screen, door knobs, light switches and the handle on the toilet and sink every morning. By the end, more than 2 minutes has passed as per the directions on the wipes allowing me to begin my day. I am more concerned about getting the flu and roto virus than Covid 19.

On the lighter side (or heavier) depending on how you are feeling while reading this.

Covid Conspiracies I have heard-

New virus to distract from problem afflicting the elections.
Coincidence that Covid came about when 5G phones were released in China. Virus could be riding the technology wave.
China getting back at world for sanctions.
Shutdown of global economy.
Elderly cleansing of the planet.
Force United States to become self sufficient instead of importing so many goods.

I know that some of the ideas sound pretty weird. But, it could be any one of those or none. It is just interesting to hear what people think.

My job now has the custodians wiping down door knobs daily. That wasn’t even done during the bird flu, H1N1, SARS and MRSA outbreaks in the last 10 years. What I would like to know is why wasn’t this done on regular basis to begin with. Every year, within 10 days of school opening, Roto Virus and the flu are rampant through the staff and student body. Maybe this little extra step will continue to the beginning of next school year. Maybe….student and faculty absences will be less with this step.

I recently listened to a broadcast about Covid 19 and the cause. It was one of the conspiracies I listed above. My favorite part of the whole broadcast was the end. The guest speaker said that all this does not matter, except to know Jesus and hold our hope in Him.

Whether me or someone I know succumb to this virus, it is in God’s hands. We all have a beginning and an end date that only God knows.

Every day God allows me to wake up. He is not done with me yet.

Closing thoughts totally off the subject….

Take some time and see Code 8 and Farmaggedon. Code 8 is thought provoker and makes a person consider just how far we are from a new type of prejudice. Farmageddon is a funny Shawn the Sheep movie. Just sit back and laugh.

Enjoy the little things. Let God carry the big things.

You are not alone

I wanted to share an update and an interesting article I found.

First of all, my purchase of steel toed work sneakers for the bruising of my toes has worked. My toe nails are growing out nicely. I figure in about 2-3 more months. I can go without dark nail polish again. I am still trying to find a balance between yoga, circuit training and walking. I am still ending up too sore most weeks. That may just be the way it is due to the other underlying factors.

I am having a little anxiety about my pulmonary function test tomorrow. Oh well, I am taking it easy today and drinking plenty of liquids.

I recently ran across an article on Everyday Health website by Cathy Gerard about “Celebrities with Rheumatic Diseases“. If you get a chance, read it. Everyday Health is one of my favorite websites. The articles are relevant to my concerns along with being short and sweet.

Some of the highlights from this article are…..

Morgan Freeman has fibromyaglia and still exercises with golf and walking. Dan Reynolds has ankylosing spondylitis and uses exercise with anti-inflammatory diet. Nick Cannon has lupus and eats properly while taking preventative measures to avoid flare-ups. Venus Williams has sjogren’s syndrome. Matt Iseman has rheumatoid arthritis and uses a combination of yoga, swimming and social support. There are more celebrities in this article. I just wanted to highlight a few with what they are doing to control their problems.

Bottom line, these immune disorders do not discriminate on any level. Work with your specialist team to find what works to help you control your issues. As you know I am a strong believer of complimentary therapy along with the right medications. So do your morning exercise, eat anti-inflammatory and adjust your lifestyle to stay symptom free as much as possible. Find a support group of some kind or even start your own circle of influence that will help you.

Above all, remember God has your back.

Not feeling so Holly Jolly this Christmas?

I am not going to hide this. I really enjoy Christmas. I start planning my gifts for next year as soon as I have given out this year’s. I enjoy it even more now that my sister is living close now.

For some reason, this year I haven’t been able to quite grasp the jolly of the season. I am content. I have food, good friends, housing, clothes, my dog… Why am I not feeling it this year?

Well……you know I went into self analysis mode…..

It could be because….

I feel like I don’t have enough money to get everyone what I want to give. (notice the I in that sentence?)
Work has sucked the life out of our office. Even decorating the office was hard. It didn’t help that someone helped themselves to our decorations one night.
It is hard to be happy when those close friends around you are suffering. I want to help, but I am at a loss how to.
It is hard to be happy when so many of our students are getting in trouble for THC, vaping equipment and general anger issues.
Christmas and New Year fall in the middle of the week this year. It is hard to plan anything during the week. I work the weekends.
Family issues at home also influence how I react to the holidays. If the other part of the family is not feeling it, I most likely will not either.
I can’t do everything I want to. Decorating the house is work. It used to be entertainment.

I could go on and on. My final conclusion after witnessing so many young women and men go into mental health wards these last few weeks, the arrests for self medicating with THC vape pens and the overall lack of motivation at work, is that it is okay to be content this year.

Decorations at home don’t have to go up. So someone stole decorations from work. I need to pray that they use them in honor of God somehow. (or honestly, what comes around goes around – God will get them.) Even though I haven’t been able to give everyone what I originally intended. God provided other substitutes. Just like I don’t have a good day everyday. Not every Christmas is going to be Wonderful. It might just be Okay. I did get my toes done for a Christmas party.

The point is that God allowed me to live another season with my friends and family. I should relish that.

May you have a Merry Christmas and a Happy New Year.

Picture from last year.

Esophogeal mano – what?

As I promised, here is the final gastric test I have had this year. It was called a Manometry (AKA esophogeal motility test). Once again I found myself subject to unknown torture. But, after waiting a month to talk to you about it, I believe my perception of the torture is more due to the medicinal fast than the actual procedure. Please be reminded that I only had one part of the test done. I do not think I could have handled the second part at all.

So, What happens with this test?

Let me break it down for you……

Fast from foods and medication from midnight on. (no biggy, right?)
Have a spray in your mouth, then swallow.
Have gel put in your left nostril. Sniff. Swallow.
Have gel put in your right nostril. Sniff. Swallow.
Have long skinny tube threaded down your left nostril and then swallow repeatedly to get measuring technology down esophagus to stomach.
Spend next twenty minutes swallowing saline solution (no talking allowed) in various positions.
Count to 20 fast.
Exhale hard as technology is removed from your nose.
Deal with upset stomach, medication withdrawals and sore throat. Oh, and now be reminded because of GERD problems, you need to wait another 2 hours before eating or drinking anything because of anesthesia administered through nose. This is so that you don’t choke yourself or cause pneumonia from aspiration.

Actually, the worst part for me is the afterwards. I take my medications around 5 am and pm every day. So any time I need to fast for a 9 am appointment or later really throws my body off. Then you tell me I have to wait another 2-3 hours to eat or take my meds? That really puts me into a world of funk. These so called tests cause me to get out of sync on my medication by over 7 hours sometimes.

I asked the doctor why getting out of sync on meds has such a profound affect on me. He said it shouldn’t, but he would note it.

This time, I had a sore throat for about 3 days.

I did finally get a an explanation as to why I am having a few problems. I have aperistalsis of my esophagus in the middle. So, that explains why I have to eat sitting up, stay sitting up for three hours after eating, and swallowing large chunks of vitamins (or food) no longer works. I was informed that this is part of the condition of having Sjogren’s or Lupus or Schleroderma. I kindly asked the doctor not to add any further auto immune conditions if not needed. He laughed and said he meant Sjogren’s. Unfortunately, treatment is not needed at this stage unless the top muscle or bottom muscle cease to function.

Being a self-diagnoser, I looked up the treatment option. I did not like what I found. So, I will stick to liquid calcium, gummy vitamin C and chewing my food 20 times before swallowing.

What about the 2nd part of the test? Not unless I am desperate will I have it done. It would mean 5 days without my GERD medication, then a sensor stuck down my nose for 24 hours to measure the acidity in my stomach. Nope, not gonna happen. I am all for finding out about what is going on. I am not for being uncomfortable for a week to know my stomach has too much acid. I already know that answer. YES.

I want to take a minute and let you know that I really, really believe that God is allowing me to have these experiences. Already I have been able to help a couple of people to get help that they need by my walk with Him. I don’t have to like these experiences. My last nurse who processed this procedure with me stated that I had such a good attitude and positive outlook. I know it was God in me. Because I really did not want to do these tests. As long as He allows me to wake up each day, I will keep on walking.