Category: General Advice

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.

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-

1.  New virus to distract from problem afflicting the elections.
2. Coincidence that Covid came about when 5G phones were released in China.  Virus could be riding the technology wave.
3. China getting back at world for sanctions.
4. Shutdown of global economy.
5. Elderly cleansing of the planet.
6. 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.

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.

I haven’t had much to say lately.  My next round of respiratory tests and labs are in two weeks.  I did recently undergo a biopsy of endometrial material.  I won’t have those results for two  weeks also.  But,  I have noticed some of the following changes lately.  Please be advised that these may or may not apply to you and I will be bringing them up to the doctor.

• Mosquito hands – every now and then I will have what I call mosquito hands.  What does that mean?  Well, during the process of trying to wind down and fall asleep, it feels like a bunch of mosquitos attacking my hands.  Only my hands.  This is not to be confused with the random pin pricks I normally feel as I fall asleep.  It usually takes a dose of aspirin and a valium to get them to calm down so that I can sleep.
• Avoiding grains does make a difference –  I have  regressed now and then to conserve on time or convenience to eating foods that contain grains that are gluten – free.  This usually causes me to wake up the next morning with an achy body and/or a rash on my hands.  After two days of avoiding all grains, rash is healed and body aches are gone.  Avoiding grains does not seem to affect the amount of coughing.
• Body breakdowns – recently I have been experiencing what I want to call body breakdowns.  I don’t really know how to describe it except that it starts with me feeling a little chilled.  Then it feels like a lead blanket (like the one from the dentist) being laid on me.  I am usually in bed before this lead blanket feeling overcomes me.  I am unable to move for about two hours.  I don’t fall asleep.  I don’t have  a fever.  But I am unable to do more than lay there and assure my dog verbally that I am okay.  After about two hours, it feels like the blanket is lifted and I am fine.  There does not seem to be a trigger or anything to bring it on.  I actually took a day off from work, stayed home on oxygen and drank about a gallon or more of liquids to see if it helped.  It did.  The next event lasted only 45 minutes.  But as soon as I got chilled, I drank a big glass of water and ran upstairs to lay down.  I can only guess that maybe I am getting dehydrated during the day causing this event.  I can’t explain it any other way.  It will be interesting to see what the doctor says.
• Quality of vitamins do count –   I used to take a general multi-vitamin by Centrum and any generic of probiotics, calcium, biotin, iron and D3.  Well…..My labs steadily were getting worse regarding my hemoglobin.  So, I have been slowly switching to a “food -based” vitamin company.  I do admit that they are not cheap.  It has been three months since I have switched the iron, calcium and D3.  My labs in February were one point higher.  I have now added a more costly 16 strain probiotic to my regimen and a different multi for women over 50.  I have labs in two weeks to see if the hemoglobin returns back to normal.  If it does, then my investment in these particular brand of vitamins and other supplements will be worth it.
• Remember Turmeric – I have recently discovered that taking turmeric at night is a must for me.  I forgot one night.  The next morning my hands were puffy and stiff.  This herb is great for reducing inflammation in the body.
• Getting back social events – I have been blessed by friends and family to have scheduled once a month for me to attend some kind of community social event.  January, I saw chinese dancers.  February, my son took me to a piano concert and recently this month, my best friend took me to an opera.  Understand that the day before each of these events, I stayed at home on oxygen and rested.    It takes planning, but each event was thoroughly enjoyed.  So, if you can afford it (if you can’t- there are free concerts out there, you just have to find them), schedule yourself for something once a quarter or even once a month.  Plan ahead to get rest the day before and enjoy.

I hope these few insights help you with what you or your loved one is going through.  I am not in their shoes, so do not count this as advice.  Count this as my walk.  If anything I share helps you to feel better, wonderful.  If not, keep researching.  I am always looking for new information on treatments, complimentary medicine and psychological information to help me deal with my personal journey.

As God closes doors on what I can’t do anymore, He opens His arms even bigger to receive me and help me with what I can do.

I have been pussy footing around about my health lately.  I had a checkup in August that caught me by surprise.  My health has taken a turn for the worse.

Yes, it has.  I can feel it now each day.  Each day gets just a little harder.  The neuropathy that was just a prick here and there in the evenings now feels like a swarm of mosquitos.  I now take my portable oxygen to work.  I find myself needing it at least once a week or more.  I race home in the evenings to get to the continuous unit.  Every outing seems more difficult.

I went to the movies the other day with my husband.  By the end of the movie, I could hardly move due to shooting pains in my legs from the arthritus.

Lately, I am relieved to see Fridays.  I find getting up on Thursday and Friday mornings to go to work to be difficult and unmotivating.

These are just a few of the things I am encountering.

I did submit a resume to another job prospect before my doctor’s appointment in August.  I am now being asked to follow through with an interview.  I had to tell a close friend why I have not followed through for the interview.  I had to tell them that I was not comfortable working so far away from home.  I also had to explain that my condition had gotten worse.  Nothing has hurt me more than explaining to a close friend that I am even closer to dying than previously.  I told this friend very frankly.  I was going to sugar coat it.  Let’s be honest, sugar coating this issue is not going to help anyone.  So, I kept the discussion to the facts and how I felt.  My friend accepted the news better than I thought.  Of course my imagination takes everything to the worst level.

Now, let’s talk about what I am doing to help manage this decline.

1.  I do yoga every morning Monday through Friday whether “I feel like it” or not.  At least 20 minutes.  I do try to fit in another 10 minutes in the evening.
2. I allow myself an alcoholic drink in the evenings when I want one.  Usually about twice a week and only one serving.
3. I take the dog to work once a week with me.
4. I make sure to walk the dog every morning.
5. Take my medications as prescribed.
6. Avoid the news.  It just makes me more depressed
7. Allow my friends to help me.
8. Keep my volunteering commitments.  I have continued to volunteer at a food bank every Sunday.  It helps distract me from my problems.  I do wear the portable oxygen while doing this.
9. Get help from Customer Service when grocery shopping.  I wear the portable oxygen when shopping.
10. Take time with my friends as precious and a priority.
11. Take time off if needed to recoup and recharge to handle the rest of the week.

I have been diagnosed with further complications with regards to female problems.  I am going through the process of diagnosis and surgery may be possible in the near future.  I find this a little scary because sometimes I heal fast and other times I heal slow.  Since my bruises are taking a long time to go away, I am assuming I am in the phase of slow healing.

My only conclusion at this point is that I am in a flare up of my condition.  I am hoping that it will subside and or go into remission.  I have further testing in December.  At that point, it will be decided if I need to transition to retuxin drips for my condition.

I told my doctor in August that God knows my date and time, a transplant won’t make any difference.  Also, after doing a variety of researching, my chance of survival is around 20%.   I am sorry, that is just not high enough for me to risk it even if I cleared the process.

I am grateful that my friends have accepted my condition.  My daughter still gets tears when I cough excessively.

God has provided for me greatly these last few months.  Things have been a little easier financially.  I am grateful.

I do not know what is ahead nor how much time is left.  I place my hope in God that He will walk me to the end gently.  He gives me good days and good moments.  I enjoy each second.

May your journey with these conditions be as blessed as mine.

I am happy to report that our family made it through the hurricane with little to no damage.  Having MCTD and a dog sort of forced us to stay in our apartment.  So, to give you guidance, I am going to share my preparations, what I did during and what I am doing now while waiting to return to work.

Preparation-

• Gathered all medication in one area.  I put all extra stock of medication in a rolling suitcase in case we had to leave.
• Placed all important documents in the same area as medication next to an empty sterlite container.
• Filled all containers I could with filtered and tap water.
• I even made some sun tea should we lose electricity.
• Charged up all batteries for all electronics and medical equipment.
• Made sure everyone was clean before high winds hit.
• Had a contingency plan on how to use portable oxygen concentrator in the event of loss of power.  I figured I could use it as a minimum of two hours a night for a week (about 13 hours of battery) until we got power or I could charge it at someone’s residence.
• Made food for my specific diet that could be eaten cold.

During-

• Made sure to keep regular sleeping hours.  This storm was over two days long.
• Keep exercising.  I did yoga every morning at my normal times.  I had memorized the moves due to consistent practice.  Played chase with the dog.
• Had coloring books, crafts, books and knitting ready in case of loss of power.  I actually did a cross stitch piece when bored and lost internet.
• Kept electricity use to a minimum.
• I did use my oxygen during the night as prescribed.  I am grateful that we did not lose power.

After-

• Unpacked all medications and put paperwork back.
• Checked the apartment for damage, threw out garbage from two days being inside.
• Continued yoga, Reiki and Bible reading.
• Go outside and enjoy the sun.
• Made food for meals and lunches for work.
• Try to avoid driving around since limited gas for a while.

I have to admit that Daisy has enjoyed me being home these days.  Personally, I was ready to return to work a day after the storm was done.  But, I am one of the few with power and no children to worry about.

In the mean time, I am playing games and doing jigsaw puzzles on the computer  (we didn’t lose internet either.)

I hope this helps.  Again I am so grateful that the storm avoided us.  I was prepared in the event it did hit us.

The biggest tip I have to give you regarding seasonal natural disasters like hurricanes, typhoons, blizzards, etc. is to have the necessary supplies at the beginning of the season.  It was nice to know that we already had a case of bottled water and canned food to last a week or more.  I bought those at the beginning of the season with my first paycheck in June.

I know God was the one who protected us.  Due to that end, those that live in the building with me were also blessed.  The surrounding buildings had all lost power.

I will confess that I did break down and cry before the storm hit because of stress.  Before the storm, I did notice that my coughing did get worse two days before the storm, then returned to normal once it hit.

I never stopped believing that God would provide for me no matter what the circumstance.