Health – Page 3 – Alayon Inspiration

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.

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.

Good News – Medical Update

It has been an expensive last couple of months. But, I have good news.

The colonoscopy and endoscopy went well. The pre-procedure diet made me feel worse than doing the fasting and colon cleanse prep. I have a couple of polyps in my stomach and I had (past tense) a small one in my colon. All biopsies were negative. The stomach polyp is from the GERD medication.

Stomach empty test was interesting. It made me ill because I had to go an extra 9 hours without my medication. Good news is that my stomach empties normally.

Esophagram second time around had do with a pill test. That came out normal also.

Echocardiogram was normal and my pulmonary function test had me returning to the functioning I had last fall. Very good news. Failure to recover some function would have meant a major medicine change.

Labs have been great since I changed up my vitamins once again. Although, Endocrinologist suggested upping my iron intake a little bit more. I have felt even better since I have. (I take Vitamin Code Raw Iron- no constipation.)

I still have the motility test for my esophagus. That is forth coming in the near future.

With everything done, I have almost met my $4,000 out of pocket insurance limit. This has been an expensive year. Thankfully I do not need to repeat for quite a while on the digestive tests unless there is a problem to address. 10 years for the colonoscopy.

As for my regurgitation when I cough a lot….That has gotten better since the acid re-flux medication was adjusted. I have also adjusted how much I eat, when I eat and when I take my medication. Quite the balancing act to keep me going.

I have been continuing my morning yoga and twice a week work outs in the Wellness center at work.

Let me encourage you to continue on….

Daily meditation on God’s words
Daily exercise (at least 4 times a week at 20+ minutes, break a mild sweat)
Daily mindful mediation. Be aware of yourself, your surroundings, those around you.
Daily vitamins to supplement what you can not eat due to your conditions
Enjoy time with your friends
Ask questions, do your research on your conditions
Remember that it is okay to cry and to laugh about your situation.

Some days I cough more reminding me how precious every breath of air is. Some days I am in pain more reminding how precious every move I make is. My goal is to make a lasting impression on those I touch in my circles of influence of strength. It is also my goal to understand when I need to ask for help when my strength is just not enough.

I hope you have rejoiced with me in this round of good news. May you have a wonderful day.

I don’t know about you, but I am looking forward to this holiday season.

Gastro Visit

Okay, I am over 50 now and I need a colonoscopy. For most people with minimal health problems, this is just an inconvenience for a few days. For someone like me who has several medical issues, this becomes a scary ride for a whole week. Because of this scare, instead of asking my primary for the script. I decided to see a gastroenterologist.

Got the referral and saw the doctor this week. Due to my history of gluten sensitivity, gastric reflux, frequent regurgitation and being over 50, he ordered the works. So, now we are looking at the next two weeks of various forms of altered diet, fasting, colon cleansing and altered medication and vitamins.

Here is my disclaimer. I will do all the tests the doctor recommended and report back to you on how it went. Please understand that my view on these exams and processes may not be the same experience you will encounter. Also, if it causes me too much pain, aggravation or fatigue, the tests will not be performed again any time soon. Let me rephrase that, once these are done, unless I am diagnosed with some kind of severe problem, they will not be performed again for a very very very long time, if ever.

The doctor has lined up another esophogram with pill, stomach empty test, colonoscopy/endoscopy with biopsy and anesthesia, celiac blood work and manometry. So, what are each of these ….

Esophogram- I have had twice before. You usually fast and they take x-ray pictures as you drink some funky white stuff. This time I am to have the pill which is filmed as my esophagus moves the pill down.

Stomach empty test – Never had it. Doctor is concerned that my food is sitting in my stomach too long causing the regurgitation when coughing. This involves basic fasting, eating an egg and x-rays every hour for 4 hours to see the egg dissolve in stomach and pass to small intestine. This was big fuss because I can’t eat bread anymore. Finally got a hold of the lab, I can bring my pan de bono or pan de yucca. I am assuming it is like an egg salad sandwich with some kind of tracer in it.

Endoscopy/Colonoscopy – I did not realize what a complicated process this is. Due to my possible Celiac and colon polyps, he is having it approved with biopsy and doing both ends at the same time. Biopsy is to cover removal of any polyps in the colon. I also think he is going to take stomach lining biopsy also. This is the true test for celiac. This requires a 5 day process which includes no vitamins or herbal supplements, 3 day modified low residue diet and 1 day liquid only fast and cleansing. By the end of the 6 days, I will probably feel like poo and want to eat an elk.

Manometry and PH balance test- Never had this. This involves no gastric meds for 5 days. I don’t know if I can do this. But, I will try once. It is a 2 day process. You go in one day and they measure the esophagus strength and width. The same day they insert a small ph tracking device for 24 hours that measures the amount of acid in the esophagus. During that 24 hours, you keep a detailed diary of every thing that passes your lips and bodily movements. This is being done because of the GERD and problems I have with big pills due to Sjogren’s.

There it is. I will be getting back to you as each one happens. The stomach empty is in September. The rest in the next couple of weeks. I ask for your prayers of patience for me with medical staff. I get very fatigued and easily agitated at medical offices. All the fasting and going without my medication will cause fatigue also. I do have several friends who will be my chauffeurs during these procedures since I will be in no condition to deal with city traffic.

I know this is going to slaughter me financially. I am prepared the best I can be for this. The facilities will get a payment every month for the rest of my life if need be.

Somehow, God will see me through it all and the finances will work out also.

Vacation Experiment

A lot of thought energy went into planning a week with my brother in N.C. It actually went well. I am pleased and plan to do it again in March. But, let me tell you it took a lot of pre-planning. But, here are the short cuts…

Pack all your medications and vitamins for an additional 2 days, just in case.
Pack all your equipment. That meant extra space for the CPAP and the portable oxygen concentrator.
Pack your own snacks and food basics. Due to my limited diet, it was just easier that way. Also, it helped keep expenses down.
If a person on the other end asks what they can get for you, suggest things like the distilled water and vinegar for the cpap. Also, any ingredients that you know are good for your dietary needs that they might also like. (i.e. unsweetened apple sauce, fresh fruit, preferred meats and veggies)
Go with a friend to share the driving (We drove) and keep you on your diet.
One thing I did not do, was pack clothes for cool weather. So, pack for additional temperature changes. I packed for hot Miami weather. I did not pack for cool evenings and cold a/c.
Pack all your favorite hand and body creams. Your skin will thank you.
Pack your favorite bug spray. That way you are not doing a Walgreens run.

That is enough of what to take. Be prepared for the fatigue to hit. I was surprised that it did not hit me until the 2nd day there. Same thing happened for the return trip. Knowing this, planning excursions for future trips will be easier.

Eat healthy, stay hydrated and don’t be afraid to be a party pooper. I am used to being in bed early. That means I had to call the night before my hosts did.

I will be brutally honest. I do not believe I will be driving more than a day away. So, anything beyond a days drive will have to be plane trips. I already know that I can do that when I went to Chicago for my graduation.

This vacation experiment was a success. I am looking forward to the next adventure. I might try visiting someone else via air travel next round.

Changing my medicine routine again and vitamin change up

Okay, I am happy to report that my labs two weeks ago were the best I have ever seen. Unfortunately, my next doctor appt is a ways away. So, another lab will be run before then and it should hopefully confirm my return to some medical normality.

How have I done that…..well….

I started a different iron supplement. It is really expensive. But, it has helped.
Evening medications have been changed due to hiatal hernia discovered during esophogram (flouroscopy). No medications after climbing stairs for at least 20 minutes due to coughing sensitivity. Only one vitamin or medication at a time in the evening. This now makes my medication routine in the evening longer. Oh, well. Auto immune suppressant at 530, gerd medication at 6 or 630, black cohosh around 7, tumeric at 8, anything else at 830 or 9pm.
Continued working on circuit training and upping it to two times a week. Yoga still every morning.

I still have my normal functional lung tests and echocardiogram in about a month. I hoping for better results since my labs have gotten better.

I will be honest. I am a little scared. If my lung fnction has not gotten better, the possibility of changing medications goes up. I do not know if I can afford a change in medication. I am struggling to pay for my CPAP supplies and the esophogram (part not covered by insurance). I am feeling anxious over it.

I have to believe that all I am enduring is to the greater Glory of God. Somehow, this will all work it out. My human eyesight can’t see the long plan. I have to believe.

I will let you know what happens in the next four weeks.