Alayon Inspiration

What to do when the symptoms change

Welcome to Fibromyalgia land where pain, tingling and feeling bugs on you are now your new norm.

If you haven’t guessed by my opening sentence, I am in a flare. The Fibromyalgia flare. For the first time in over a year, I had to go home early a week ago because I just couldn’t handle being in pain and dealing with the with the imaginary millions of ants crawling up and down my body. Regular pain killers did not help, heating pads did help, but not enough. I ended up at home in bed on a heating pad, extra strength Tylenol and watched movies behind closed eyelids (I was awake, I just couldn’t keep my eyelids open).

I have never been laid out from symptoms like this before. It scared me to where my rheumatologist and I had a serious conversation. This is not the first time I have complained about it. Did you know that there is a treatment that can help? I didn’t.

Here is the basics of it for me….. Cymbalta- lowest dose. Wait- isn’t that an anti-anxiety pill? Yup. But, it is been shown to decrease the pain and neuropathy associated with Fibromyalgia.

I hemmed and hawed some. Dr. suggested that I fill it, have it available. Only I can decide when it becomes too much. It does have some side affects. Good news is that is has no contraindications with my other medications. Down side is that it takes 2 – 4 weeks to be fully effective.

Additionally, it has been decided to finish the process of getting off steroids. Taking it even slower than this spring. I will be dropping down to 0 mg. Cool, huh!

If I add the new medication, I won’t be able to tell what is from the Cymbalta and what is withdrawals. After mulling it over for a while, I am going to work at getting off the other medication before starting the new one, if I can wait that long.

There is never nothing going on. (Peaceful Warrior-movie)

The doctor was pleased with my weight loss and stated that I looked good. Joints felt great and it seems that Mr. Arthritis is letting me rest for a while.

I know that somehow God will help me to decide if and when I need to take the additional medicine. I am hoping never.

Please understand that I am not a medical professional. I am sharing my experiences, treatments and opinions with you to help you on your own journey through this adventure of dealing with auto immune disorders.

Remember your vitamins, complimentary therapies, massages and self-care. Most of all, stay hydrated.

May God continue to hold your hand and body, just as He holds me.

Being Positive in the Midst of Pain

My arms hurt. My hands hurt. My back hurts. My legs hurt. I am grumpy and short with people. What does that tell me? I am in a flare. Honestly, it is my own fault. I was trying to be everything for everyone but myself. Now, my body is letting me know that I need time for myself.

I then remembered my grateful journal. As much as I really hate that journal right now, I make myself every morning come up with at least 5 things I am grateful for. Believe it or not, it does help with the grumpiness. Even the pain gets a grateful line. If I was not feeling pain, I wouldn’t know to slow down. Or, I guess I would be dead! (hahaha)

Being in pain has also made me turn to more prayer and communicate with God more. It reminds me to pray for others who are currently in physical or emotional pain. I connect with God on how to make it through the day when I just want to stay in bed. I have had to admit to God that I can’t do it without Him.

Additionally, it made me have a talk with my husband about how I am struggling. I don’t really know if he got what I was saying. But, I did ask God to open his eyes.

The pain will subside once I get myself back into balance emotionally and physically. In the mean time, I will keep myself in continuous contact with God.

The final key is that I need to be more aware of myself, my limitations and communicate with God daily.

Back to School Blues

I know I complain every year about the return to school. I have to believe that this year has been the first I was scared. I have never had so many parents have aggressive (get my meaning) conversations with me. There have been complaints about not seeing the classrooms, not meeting the teachers on the first day, not enough masks, too much social distancing, not enough time for lunch and my favorite….why doesn’t the bus stop outside my house anymore.

There are less workers all around. Finding replacement workers is even harder.

I would like to take the time to remind parents that just because your child stayed at home last year, does not give you the right to treat any school staff like dirt. I was in my office all of last year, I am here again and I plan on being there next year. You want protection from the virus, yet turn around and want to invade the teaching space you want protected. Make up your mind!!!

As for the busses??? Well, hold on to your insurances. Many drivers left to go work where there was work. Less drivers, less routes = more corner stops in communities instead of door to door service. So your child is special needs, unless they have an individual education plan that specifies that you must have door-to-door, your child can walk the one to two blocks to the corner where the other students are waiting.

If you are unable to provide transportation to the school, then don’t pick a school outside of the zone that you live in.

What about virtual school? Well, I can already tell that most students did not do well last year. Their behavior is even worse this year. There was a huge influx of special needs students to the virtual platform that is available this year. Now those parents are bringing the students back physically because the virtual platform was not prepared to handle the specific needs of many of these students. I understand the reason why the parents chose to go virtual to protect their children. At some point between getting groceries, going to the doctor or even going to the mailbox, you have been exposed or will be exposed to the virus.

Bottom line…

Think of the sparrow and the lily of the fields, they do not hunger for anything. God has our name written in the book of Life and Death before we are even born. He is the one who knows our day of death. Be kind to those around you. Do not be anxious for anything, but with prayer and petition, take it before the Lord.

Hunger and Auto Immune

September is Hunger Awareness Month. I don’t know about you, but this has become forefront in my life since becoming labeled with various auto immune issues. Eating the right foods helps alleviate some of the symptoms encountered by the auto immune attackers. Sometimes affording these foods or any food can be a hardship. Especially when confronted with high medical and prescription costs. Do I pay for the meds for my disease or buy the foods for my disease?

As some of you know, I volunteer for a charity that does just this. It fights hunger one family at a time. I have been with this charity for 8 years now. What does this have to do with my auto-immune issues? Well, if it wasn’t for assistance from this charity, I would not have been able to afford the specialty foods I needed in the past to keep up my health and stay out of flares. Joseph Dreamhouse Community Development Corp. helped me to be able to feed my family while I focused on my health, also without having to sacrifice my medication during this time of duress.

But COVID has made the issue all more real for various reasons. There are shortages of food, employees, and time.

Volunteering regularly, I have seen the demand go up and the food go down. Due to the shut downs last year of many processing plants, lack of harvesters and even shipping issues, we are feeling the burden of increased pricing and lack of resources. The forecast through to next year states that food prices will continue to rise along with shortages.

Just as no one knew I was food insecure because I had a job, a roof over my head and a car to drive, did not mean all was right in my world. There was increased stress and continued worry over the “death sentences” my doctor had given me. I was your neighbor who always greeted you with a smile. Yet, inside I was battling a war with myself figuratively and literally.

I ask now that you take the time and really look at what is going on around you. Your neighbor, the man across the street, your co-worker in the office may be food insecure.

If you can’t help with the cost of a meal, maybe you would be willing to donate the cost of a cup of coffee? A cup at Starbucks is over $5.

https://gofund.me/6ff8d8cd

Not sure about giving money? How about visiting the Ebay store below. All purchases go to Joseph Dreamhouse CDC. It has a variety of baby items and other items. Maybe you know someone who is expecting or just had a baby?

Help Joseph Dreamhouse Community Development Corp to continue to make difference in families lives. Every little bit counts.

Follow Joseph Dreamhouse CDC

Instagram: https://instagram.com/jdhcdc

Twitter: https://twitter.com/dreamhouse_corp

Facebook: https://www.facebook.com/pages/category/Nonprofit-Organization/Joseph-Dreamhouse-Community-Development-Corp-105619008274540/

Ebay: Joseph Dreamhouse Baby N Things: http://www.ebay.com/usr/josdream_0

God has allowed me to continue on, to continue volunteering for this fantastic organization and helping families to continue on.

Solutions bring forth New Problems

Happy June!!

Finally the end of the school year is near. The last six weeks have been quite interesting. From depression to elation, I have survived it all.

I wanted to focus on a positive that is happening. After having my labs be in the green range for almost everything for over a year and a half, it has been agreed that I should start weaning off of the daily prednisone that I take. This is to help prevent osteoporosis. So….the rheumatologist and I came up with a plan. Slowly convert down to the next level, re-evaluate once I am there, and then maybe start to go all the way off or go down one more level.

Well, about four weeks into the first part of the plan, I ran into a new problem. I got to the point that I was taking 4 days of prednisone at a lower amount and 3 days at the original amount. I started spotting about every other day. I contacted the rheumatologist and my gynecologist. Rheumatologist said to stop reducing medication any further. Just keep it stable. Then suggested I see the gynecologist. I already had.

Now, speculation…… I am not a doctor. I believe the spotting is due to the fact that I am reducing my steroid level down and my body reacted. It has been 18 months since my last period and my endometrial lining could just be thinning because of this medication change.

Gynecologist did an exam and ultrasound. My lining is thick for being in menopause. Then a biopsy was needed. I hope I don’t have to go through that again. The procedure was not bad. It seems to be the medication that made me more ill. Now I am just waiting on the biopsy results.

(This is twice now that medication for a procedure has made me more sick than the procedure itself. I will have to question my specialists about this.)

In the mean time, I am keeping my prednisone the same. Four days a week I am at the lower dose and three the higher dose. I had to put up a chart on my kitchen cupboard to keep track of which day I am to take what. Some days it gets very confusing.

Somehow I know God has a plan for this. I am still here.

Positive Thinking – Setting Goals

I am happy to say that I woke up this morning. It was a good day. Minimal coughing, only a few joints ached and no fatigue.

I have finished a positive thinking course that was gifted to me for my birthday this past year. It has taken me 4 months. But, it is complete. What does that have to do with anything? Well…almost everything.

I have spent the last few years struggling with everything (from my minds eye). Disabled mentally ill husband, mentally ill child, finances, expensive prescriptions, mean medical supply companies, aches, pains, coughing, choking, car problems and on it goes. Some of it you know from my previous posts.

This course is about being positive; putting positive thoughts into the air and reaping their benefits. I always thought I was positive until I took this course. Looking back over the last few years, I believe I was positive somewhat; but more determined to survive than anything else.

This course reminded me to be grateful. I have been keeping a grateful journal for over 4 months now. Each day I write 5 things I am grateful for shortly after getting up in the morning. It can be anything from your eyes, yarn, medications, tile, grout, wheels, tires, gas, etc. Anything and everything can be included. I do not limit myself. I have even been grateful for some yucky things like mosquitos. God made everything. We should be thankful for it all. I have even caught myself writing 6 things instead of 5.

Prayer needs to be constant and specific. God wants to give us our desires. (Sometimes He says NO.)

This course taught me to speak more positive. Avoid negative talk. It hurts you and those around you. It even explained to me why I shutdown after a batch of uncontrolled negativity (whether from myself, family or work). It has helped me to understand why I love crafts and volunteering so much. Due to the positivity influence, I have adjusted the atmosphere in my office to be more calming.

I started focusing on a short term goal and a couple of long term goals with deadlines. Happily, the short term goal has already been met. Not by my deadline, but shortly thereafter by God. I couldn’t have asked for anything nicer.

So, stop, take a few minutes of your day and …..

Write a few things daily you are grateful for, no matter how silly.
Set goals in writing, be specific and have deadlines.
1. Be willing to restructure goals if deadlines are not met. Maybe God is saying “Not Yet” or “No” to the goal.
2. Have a couple Goals for each area of your life; career, health, finances, relationships, personal
Think about how you think, speak and react. Try to change it to be more uplifting.
Take the time to recharge yourself with positive energy by praying, meditating on God’s word, listening to beautiful music, work on a craft/hobby or just take a nap.

My next long term goal is to take a trip to Hawaii in the next couple of years with my sister.

There is a saying that keeps running around in my head from a previous pastor, “What is the difference between a rut and a grave? 6 Feet.” You can always find a way out of rut if you choose to. A grave is permanent.

Another is from Mary Kay Ash, “You can eat an elephant one bite at a time.”

It is okay to survive. Just remember to live while surviving. Be grateful for all God has given you.

Tracking Labs Reveals Flare Frequency

Medical disclaimer: I am not a doctor. I am an autoimmune sufferer.

I recently had another barrage of labs. This included my regular and my annual for the endocrinologist. I keep track of them on a spreadsheet. I also happen to use the graph results from the lab company that posts my results. I have known that a couple of my labs seem to roller coaster. Upon further examination, I noticed another trend. They seem to be consistent with my flares. Even though the flares are not as bad as when I was first diagnosed, it is evident.

I will have a high inflammation one lab, the next be in normal, then again a high number. So, labs are about 6 weeks apart. That means at least once a quarter I am in a flare.

Now, more news on that front. How to tell the flares apart….

I am starting to notice the subtle differences between the flare symptoms.

If I am achy, feel tingling feet/hands and experience restless legs; that is my fibromyalgia.

Achy joints that are relieved by heat. Hello Mr. Arthritis.

Excessive dry skin, fatigue and coughing is the Sjogren’s.

Funky rashes and fatigue are Mrs. Lupus.

I have been lucky not to have an war of multiple at once like 6 years ago. I was just a hot mess then.

Most of my extreme symptoms are being managed by my medication, vitamin and complimentary therapies.

Thank you God for the medication, plants, masseuses, and music.

Every day I open my eyes, I am grateful to see another day. I tell myself that I am to make a difference in the world today. God is not done with me yet.

My morning Mantra:

I am breathing. My medication is working. Today is going to be a great day.

May you find your labs revealing as to how your body works.

Thank you to Pinterest for this beautiful inspirational picture.

Online Schooling – Friend or Foe

It has been a while since I have posted an opinion. I am going to try to put both sides of the coin out there for you to decide.

School year is just a little over halfway done. Some students returned to physical school in October and others did not. At my place of employment, about 60% returned to physical while the rest stayed at home.

My only comment is that I feel this was a disaster. The other part of me understands that with the pandemic, the school systems really had no choice.

So….What’s my beef?

Here we go……

I have to admit that dealing with Special Education students, my observations may be a little skewed. Mostly, from my perspective, it appears that online education was an epic fail. Understand that there are those 10% who have thrived being online. One young lady expressed that she is able to focus better because she does not have to deal with the distractions of students around her.

Either the students who stayed at home did well or failed. Not many fell in the middle.

What about those who returned physical? That is another whole mess. I know of some students that have been quarantined so many times, they might have done better staying online at home. But, the students do seem to recover their grades faster when back in the physical classroom.

Several problems have been encountered….

Student abuse on parents. The frustration of technology not working caused some special needs students to lose their cool and take it out on the parents.

Technology failures. That was all over the news. Additionally, many internet carriers are no longer providing free internet for low income households anymore as they were in the beginning of the pandemic. There were not enough school owned laptops to provide for those that didn’t have.

Parents returning students physically, then online school, then physically, then back to online and etc., etc., etc. Lack of consistency for the student has caused further frustration and poor grades.

Many students are missing that would have normally been enrolled. When I say missing, I mean missing. No answer of phone calls, emails or home visits.

Wrap it up…

The next few years will mean a lot of students not having electives should they pursue graduating on time. Additionally, night school and credit recovery programs will be doing quite nicely. Online school option should be left available to those students who thrive with it (select few). Otherwise, I hope that with the vaccinations, physical school should be opened up for this fall.

God knows what is going on. We just have to persevere through this.

Quick Holiday Review of 2020

Here it is almost Christmas again. Who ever knew that what I started several years ago to protect my health, is now a standard for almost everyone.

Cleaning everything regularly. Not sharing pens. Standing apart from others. Avoid touching others. Cleaning grocery cart handles. Wearing masks to stay safe. (I was wearing one only when pollution count was high, now all the time outside and sometimes inside.) Taking care of yourself. Watching your mental attitude. Getting help for mental problems. Taking vitamins and eating healthy. Stop going to everything to see everyone. Have a pet. Etc.

So, since there isn’t really anything happening this Christmas with me and my family. The best present I have is that all my closest relatives and friends are alive and well. So, there won’t be a big dinner, fancy Christmas tree, lots of presents. Who cares. I am content and have joy in my heart.

I saw a relative go through the Covid 19 layoffs. Came out later with the same job at a better place. I have assisted with refitting a non-profit company. Still working on that. Several friends gained weight due to being at home. I personally lost weight because I was not stress eating.

I learned to turn off social media and news. Disconnecting from negative information is important. Don’t be ignorant about what is going on, but limit your exposure to a specific time amount each day.

I received wonderful news from my team of doctors that I am stable and visits and tests can be cut back to every six months. Again, I followed doctor directions and pursued complimentary therapies.

I have also learned that each day is unique. I have to be flexible with understanding what my body needs to get through each day.

Exercising is personal. I was doing yoga everyday. My strict schedule to pursue this wonderful exercise ended up causing more problems. Be willing to change.

Since I was unable to clean my house by the end of the day, I swapped out yoga for cleaning the house. Yep, that means doing a little bit each day. Gone are the days of having an hour or two to clean everything. It is 10 minutes here, vacuum only this room there, sweep one day, maybe mop half a room another day, etc. By the end of the week, the apartment has been cleaned. It isn’t quite the same as the feeling after you do a blitz on your apartment to make it sparkle. This is what I can do since I can’t afford someone to help. Adjustments made to meet my physical and home needs.

As I have gotten older, so has my fur baby. Had a scare after a spring vaccination. So, vaccinations spread apart a little further with a steriod shot prior to the vaccine. Her eyes are getting a greyer. She startles easier. She still loves her morning walks, but doesn’t care that we can’t walk outside the community anymore. Her food has had to be adjusted to meet her new needs. I am so grateful she has been with me all these years.

I understand the need to make ends meet. Remember to take care of yourself. Be open to receiving help. Work is great, but going to work sick is not.

Take time to know God. He knows you. Read a little bit of the Bible every morning. Pray for those you love and know. Pray for those you don’t know.

This year was a good year even with all the ugly things happening. Next year will be good also, no matter what happens.

Merry Christmas and Happy New Year. May God keep you healthy and safe.

Holiday Fatigue

Holidays are here and I am already tired. How about you?

I have been thinking about what I should say. To be honest, all I can think about is how COVID 19 has made decorating the office very simple. Basic $ store items that can be disposed of in the event of a deep cleaning.

Personally, at home? Well, a friend made me a door decoration of a candy cane. I couldn’t be more proud. I even put it up before Thanksgiving. I have talked about bringing out the Christmas decorations and the tree. But, as I even talk about it, I get tired.

My wallet is empty. Thankfully I started working on handmade Christmas presents last February. Using leftover quilting scraps and yarns from projects, my sister and I were able to make enough for everyone. So, the financial stress has been minimized.

REMEMBER SELF CARE has been on my mind a lot. I almost cancelled my manicure, pedicure and massages this month. Then I thought about the last time I let the self care wane. It cost me twice as much to get myself back into workable/functioning condition.

Let me share with you a few a tips that I plan to employ this holiday season.

Keep all self care appointments. If too expensive, cut back the length of time. For example, change the combo massage to just a reflexology. Change the mani/pedi to just a pedi.
Move doctor appointments around so that you have only one or two for the month of December. Keep Dr. fatigue to minimum.
“NO” is an answer. Covid 19 will keep many things to virtual gatherings. They are still tiring.
Quiet time needs to be incorporated to each day, even if only 5 minutes with the lights off and silence. That means no TV, music or lights. Just be and breathe.
Cook in bulk, then freeze.
Spend more time with your fur baby. Hold them closer to your heart and just breathe. They feel the stress also.
Don’t stress the presents. Re-gift if necessary from last year. Be creative. Give coupons of 10 minutes of unlimited “whining listening”.
Minimize your errands to only one a day in addition to work.
It is okay to stop and rest.
Stay in touch with God. Read your Bible early in the morning to set your day up right. Take time to pray. Take time to listen.

Most of all, remember the reason for the season. Jesus.