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You all know the cliches that “Every solution brings forth a new problem”.  I have been playing tag with this saying the last month or so.

Problem:

Legs hurt after working long physical hours on Sundays.

Solution:  Wear compression socks, buy new shoes.  Legs and feet no longer hurt.  Yay!

New Problem:  Big toe nail is getting bruised because of wearing compression socks with new shoes.

UGH!!!!!

Possible Solution:

1.  Try to find shoes with more toe allowance.

2.  Try to get different assignment for Sunday job.

3.  Stop wearing compression socks on Sundays. (not really an option)  Go back to leg and foot pain.

3.  Stop Sunday job.  Not be able to buy specialized vitamins and food for conditions.  Not really an option.

4.  Combination of one and two.

I will probably go for option 1 before going to option 4.  I really enjoy working on Sundays.  It is physical, I sweat something fierce, minimal brain function needed and I get to meet people outside my circle of influence.  In the mean time, I have gone shopping for shoes.  Spoken to a couple shoe specialists and have found a pair online.  Special order of course, steel toes with wide width and a 1/2 size larger to accommodate the compression socks.  Two people are going to help with the cost as my Christmas present.

 

Old problem:

Doctors want me to continue yoga and exercise twice a week to keep auto immune conditions in check.

Solution:

I bought a harder yoga this summer.  Got a circuit training routine to do at home along with Thursdays at the Wellness center at work.

Gone down a blouse size again.  Yay!

New Problem:

Foot pain due to over stretching of ankle muscles.  Arm pain due to over working with light weights.

Possible Solution:

Don’t do moves that stretch the top of the ankles and foot.  Do circuit training without weights.

I will let you know what happens with that.

In the mean time… my labs look great.  Everyone tells me I look great.

Personally…my inner conversation is

“Hey, the scale isn’t moving.  Why am I working so hard?  If I look so great; why do I feel like I have mosquitoes biting me all the time and sore areas on my body?  Thanks for the compliment.  Do you know how much money I am spending on vitamins to look this way?”

Well, enough of the ranting and venting.  Thank you for your time.

I know God has something important for me to do or share.  He is allowing me to make it through each day.  I have wonderful friends, family and friends who are family.

There is a song about blessings being trials of our life.  I have to admit, some of my biggest blessings have come through really hard trials.  I just hope I can bless someone with this blog.

Keep on praying.  He is always listening.

P.S.  I have lifted up the foot pain problems and toe bruising to God.  I see the doctor in two weeks.  I will discuss it with her also.

 

 

I have gone through almost $700 in co-pays for dr. visits, labs and various tests in October.  This included a ct scan, sleep test and the usual O2 tests I take every four months.  My wellness visits just happen to fall in there also.  To say the least, I was averaging 2-3 dr. related appointments a week.  After all is said and done and my wallet is empty, here is the bottom line.  ( I am still waiting on my bills to finish coming in.)

1. I really don’t need oxygen at night.  But, I do stop breathing 30+ times during REM only.  So, pap machine has been ordered.  I will get back to you on how that goes.   In mean time, continue oxygen at night. (Conspiracy theory-  if you snore, you will need a pap machine since you have apnea.  Guess, what?  That means we all have sleep apea. Talk about a medical scam.)
2.  Stop playing with getting off prednisone.  It threw some of my labs and tests off and I am fatigued.   The amount I am taking is less than what my body normally produces anyway.  Long term consequences are minimal considering everything I am suffering from.
3.  Team Leader Dr. Jackson feels that I have leveled out.  Bad news, my CT scan is identical to three years ago when I was diagnosed and started this blog.  Good news is that it is identical to three years ago.  So….lung function has stabilized.  Current medication routine is working.  I now go to 6 month tests and dr. appointments.  Yay!  Less money out of my pocket.  Dr. stated there is no longer a timeline on my life expectancy now.
4.  One of my wellness labs came back questionable.  I was not informed which one and the primary dr. has not released the results to my lab site.  They wanted me to run the lab again.  I told them “No” unless they could tell me what was exactly wrong.  After a long pause, I was informed it looked like I had an infection.  I said, “Yes, that would explain the fevers I have had the last couple of evenings. But, I am already on antibiotics every other day anyway.  And I am probably in a flare of one of my many conditions.  I get labs done in three weeks again anyway.”  No…that was not good enough.  They want me to do it again and have a follow-up with the primary care.  Of course my mind goes to “NO”.  I just spent over half a month in doctor’s offices.  I refuse to go back over “you might have an infection”.  I told them to send me the lab request so I can decide if I will do it again.  I politely informed them that if the primary care was concerned, to please call my Team leader at UM and discuss it with him since he is my medication manager.
5. Read an article about quality versus trying to stop dying in October AARP.  Interviewee was asked to take sleep test (read this after mine had been done).  She said no.  The doctor said she might die in her sleep.  She said she thought that would be great and that she wanted to stop thinking about the What Ifs in life.  It made me rethink why I am refusing the lung transplant.  I came back to the same conclusion.  No, I don’t want it.  Dying in my sleep would be great.  If I die during a coughing fit, fine also.  Spending 6+ months in a hospital with only a 25% chance of getting out, not good.  If I can keep my lungs stable, I would do better over the long haul than rushing to fix something God has allowed to go wrong.  So focus on today and enjoying today.  Tomorrow is not written.

Let’s get back to quality than longevity/quantity of life.  Enjoy each day.  Enjoy each holiday.  Enjoy my family and friends.  So, here is how Daisy helped me spend October with some of my friends.

Warning:  this question will cause you to analyze your thought processes and how you react with feelings.

5 minute meditation question….Are your thoughts and feelings true guides?

I have had a few things rattling around in my head lately.  So, to get them out, I am putting them here to share with you.

First,  I want to apologize to those of you who are 15+ years older than I am.  With this illness, I have found new respect for the aging process.  When I was in my 30’s, I didn’t understand how those 45+ didn’t cook for their families anymore.  I didn’t understand why you couldn’t do several errands in a day.  I didn’t comprehend why you couldn’t go out in the evenings.  Now, I get it.    These things have become a challenge to me.

How do you explain to someone that you can only do one errand a day, when they remember you going all day to get everything done?

How do you explain that you can’t walk to the copier to retrieve printed documents when it is only 25 ft. away?

After having an hour talk with a person about the foods you can eat, do you not accept food that makes you sick?  Especially when they took the time to go to the store and buy the food for a special occasion.  (This really bugs me.  Don’t ask me what I want and then buy whatever you want.)

If you know I can’t anything with gluten, don’t offer me cake, cookies, pies, etc.

I have now progressed to sensitivities to all grains.  That includes corn, rice and oats along with “ancient” grains.  So chips, rice bowls, wraps, sandwiches are now off bounds.  So, when I tell you I can only eat at few places, meet me there.

Sleep is difficult for me either due to respiratory coughing or joint pain.  Getting to sleep is my biggest hurdle right now.  Understand that I need to be home by a certain time to start winding down and do what I need to do to get to sleep.  I have to go through a whole process of taking different supplements in the evenings to address my nighttime symptoms.  So, I need to be home by 7 pm to accomplish that.

Parents- explain to your children that I wear oxygen because I have breathing problems.  I am not weird.  I am ill, but not contagious.

There is more, but I ran out of energy.  Time to start winding down.

 

 

I have been wanting to share with you how my Thanksgiving went.  It went well.  I even had help decorating my office for Thanksgiving and again for Christmas.  Of course, I had to have help.

Thanksgiving went great.  I paired up with friends who eat the similar diet that I do.  We discussed the menu ahead of time and agreed on keeping out or keeping in certain items.  For the most part, it ended up being a Paleo Thanksgiving.  It couldn’t have been better.

I didn’t feel tempted to eat things I couldn’t and I had no adverse reactions to anything.

So, here are a few tips that I followed to make my Thanksgiving and my upcoming Christmas a success….

1.  Schedule only one thing a day to do in addition to your regular work schedule.  i.e.  Making a pie.  Or going to work and then a doctor’s visit.
2.  Let your family and friends know ahead of time of your dietary restrictions.
3.  Bring a dish to the event that you know you can eat.
4.  If you are unsure about an event,  eat before hand or just don’t go.  “No” is an answer and an option.  If those concerned for you don’t understand.  Move on.
5.   Watch all the holiday scents.  People get candle and scent crazy this time of the year.  If a scent bothers you, you might have to leave.  I know I avoid certain places during this time (actually all time) like Bed Bath and Beyond and Bath & Body Works, Christmas Palace and malls in general.
6.   Don’t be ashamed to ask people that are close to you to go cologne free around you.  Living in a hispanic community, cheek kisses are exchanged at greetings and good-byes.  This exchange with a heavy cologne can make me sick for hours.  If they have cologne, offer your hand or express that you really can’t handle their cologne/perfume.  If you can smell it 3′ away from them, don’t hug or kiss them.
7.  Make the most of each holiday.  I have decided to enjoy each holiday with new eyes.  Be a child.  Allow the wonder to flow over you.  But, stay in budget.
8.  If eating out, look up restaurant menus online.  Most places offer GF menu options or allergy menus if you know how to find it.  If not, don’t go to that restaurant.  I have found a few that I like and I have let the corporate office know I appreciate it for that location.  These few establishments now know me because they got rewarded from Corporate for serving my special needs.
9.  Do what you can.   This year I put up the Christmas tree and a few decorations.  I didn’t have help (like I did at my office), so only half went up.  I was pleased.  Here is picture. 
10.  Here is a video of my office.  It took two other people to help me.  It isn’t much, but I feel more festive with these few decorations.
11.   If you don’t feel in the mood to do decorations, it is okay.  I didn’t last year.  I meant to, I just didn’t have the energy or even the desire.
12.   Allow every day to be a gift.  I know we all have work, meals to prepare and family’s to tend to.  Please take a few minutes for yourself and to just enjoy.  This is your choice.  You can allow yourself to be “down” or choose to make each day enjoyable.

Okay, I am done preaching and I feel like I am repeating myself.

Embrace each morning with a short devotional and meditate on the word “gratitude” for 3-5 minutes.  It changes your perception.  Each day is a blessing to me.  I was supposed to be on disability and permant oxygen at this point in my illness.  I still work, volunteer and visit friends independently.  So I can’t put up decorations by myself anymore.  More excuses to have people involved in my life for me to be grateful for them.

Remember that Christ is reason for this season.

Here it is two weeks afer my trip to Chicago and I am still exhausted.  No matter how much I sleep or nap.  I just don’t feel energetic.  It also doesn’t help that the last three weeks have been the end of school, my trip and closing of my office along with hearty dose of roaches and bed bugs.  Nothing like a good stew of stress to make you feel sicker than ever.  The first three stressors I knew about and I had a plan of attack to keep them from causing a flare up.  As for the bed bugs, well, they happen and are difficult to kill.

Well…I believe that this is a flare up of my conditions. Whether it is the Lupus, RA or Sjogren’s acting up, it is difficult to tell.  I am more inclined to say the Lupus since it is more stress sensitive.  Also, I have had a rash magically appear this week with no known cause other than RA or the Lupus.  My chest has felt heavier this week.

My suggestion for dealing with known traveling or stressful situations.

• Do take your vitamins and medications every day.
• Do take a nap if needed.
• Do stick to regular exercise or even ramp it up a little (very little).  Endorphins help make you feel better.
• Stay connected to your social groups.  Church, volunteering, etc.
• Eat healthy.  (I have found myself drawn to fresh raw vegetables and beef.)
• If you are on oxygen, allow yourself a day in bed on the oxygen playing games, watching movies, knitting, etc.  (I did that yesterday and I feel a little better today.)  I have been taking my portable oxygen everywhere.  It has been used frequently.
• Stay connected to God.  I have found impromptu prayer to lift me in times of dire exhaustion when I know I can’t rest any time soon.  My morning devotional time helps keep me in a positive frame of mind.
• Try alternative medicine.  I have found a reflexology massage to easy my symptoms for up to two weeks.   I am currently exploring Reiki.  I have had two treatments after stressful days.  Both times I slept better that night and my muscles in my back were looser.
• Pamper yourself.  Get your nails done.  I love having a pedicure once a month.  There is something about having my feet soak while sitting in a massage chair that is uplifting.  I am learning to schedule these pamperings during my lunch hour during stressful weeks.  I come back with a nicer attitude and able to handle the rest of the day.
• Understand that this is a flare up.  It will end after it has run its course and you have healed.

I am going to watch my symptoms very carefully.  I am not due to see the doctors until the first week of August.  If the exhaustion does not start to abate this next week, I will contact them.

I have various other doctor appointments and labs all summer long.  I will be keeping you updated.

Now, here is my disclaimer.  I am not in any way a medical professional.  I research, read and investigate on my own.  I am documenting my travels through this medical condition so others can see what may (and I say may) help them.  I do have my herbology certificate.  I do have a BS in Business Administration.  I will be attending a Reiki training this summer.

The  April and May editions  of the magazine by Sjogren’s Foundation have incredible articles.  They help you understand Sjogren’s and RA much better.  April’s had the results of a survey that they did.  It was very interesting about how much this affects your life, relationships and finances.  You may or may not have Sjogren’s, but it is worth the annual fee just for the magazine with latest in medical and alternative methods for treating.  Just so you know, almost every person with this condition has up to 5 other medical conditions associated with the diagnosis.  I am one.  Here is the link https://www.sjogrens.org/files/articles/SSFLivingwithSjogrens.pdf

Enjoy the article.  Here is the link to the foundation  https://www.sjogrens.org/

I will admit the biggest comfort is stopping and realizing that God knows what is going on.  The bigger picture is beyond my human vision capacity.    I figure God is telling me it is time to enjoy my summer break.

 

As this school calendar year draws to a close, I find myself preparing for my own graduation.  I usually volunteer at  my employment to assist with the seniors graduating.  They will be fine without me.

I originally went back to school to force my employer to give me a raise.  Unfortunately, it doesn’t work that way.  Wish it did.  More secretaries would go back to school and get their degrees.  Now, I look at the diploma and pray that God will take the knowledge I have learned and put it to use.

In the mean time, a friend is working with me to have a graduation party.  I originally wanted to open it up to all my work and church family.  But, that is unrealistic and expensive.  So, working with a budget, we came with a list of those most encouraging to me during this journey.

So, if you were not invited, please don’t feel slighted.  I want to take this time to thank all of you who cheered from behind the scenese with prayer or even encouraging thoughts.  God heard you.  I want to thank all those who helped me financially, physically and with verbal encouragement.  If I could, I would have you all in one room and thank each and everyone of you and raise a toast in your honor.

Some of you have encouraged me from afar.  Some close.  Some as mentors and footsteps to follow behind you.  Others have moved away or passed.  I hope you know that I have lifted you up to God for blessings.

For those of you who subscribe to my blog for the medical or information, you get a thank you also.  It is encouraging to see that you signed up as a subscriber.  You have read about my trials and tribulations with Social Security, mentally ill family members and problems at work in addition to my failing health.

People ask me about where do I go from here with my degree?  Honestly I don’t know.  I would like to think God has a purpose for it.  Even if it won’t be used in the business world, it was a great distraction for me during these last two years from my own problems.  It was also a great excuse to get away from my family members because I had to type a paper, research to work on or other homework items.  If it ends up being an expensive bucket list item, I am okay with that.

So, in closing.  Thank you all.  May this part of my journey be an inspiration for you to consider finishing something you started 30 years ago.

 

 

This day comes every year around the second Sunday of each May.  I have gone from enjoying it, to loathing it, to completely not caring either way.  I remember the days I enjoyed the children bringing home craft gifts from school and making me go to lunch with them on that Sunday to be presented with a cute gift they thought thought I would like.  I also remember the days when I loathed it because I couldn’t understand why my husband would abandon me and the children placing us in hardship.  It was supposed to be his job to make sure the children remembered.

Now, as I have gotten older, I understand why mom used to say to give her a day of peace.  Dad used to take me out to a late lunch or early dinner and leave mom at home.  I totally get that.  I know that in the past couple of years, nothing pleases me more than an afternoon of popcorn and good movie alone.

My children still do the dinner out or flowers.  But, I tell them not to do it on that Sunday.  Church takes the time to honor every woman aged 18 and older with a flower and a small gift.  Sometimes at work, I am showered with gifts.

I honestly do not want special gifts.  I want time.  I want someone to come along side of me to help clean the house.  Take time to watch a movie with me and talk.  Join me for happy hour and listen to me prattle.  Join me shopping for an hour at Macy’s clearance rack.

My husband asked what he could do for me for that Sunday.  I told him to hire someone to come in, clean out the kitchen, wipe down the cabinets, spray for roaches and then place everything back the way I had it.  He just looked at me with a blank stare.  This is something that I no longer have the strength to do on my own due to my condition.

Having this condition has made me enjoy things more and avoid others.  Mother’s Day is one that I avoid.  I do not want to be reminded of my mom’s passing, my parental failings or that I am now transitioning to be an empty nester.  I want to be appreciated any day, not just one day.

I am curious to see what my children will do and who will remember at work.  As for that Sunday.  I will be working.  I will be doing what makes me feel valued….volunteering at a food pantry.  May I bless someone else’s Mother’s Day with great service.

For those of you who enjoy this time, I wish you continued enjoyment.  If you are like me, may God bless you with inner peace on that day.  That is what I pray for myself.

As I ponder these last two days with opening of schools, I could sit here and rant about the overprotective extremely dramatic parents of the students I serve.  I could even go on about the shortage of teachers and bus drivers.  Not tonight.

I am enjoying the fruits of my Sunday labors.  I have plate of bbq ribs, mashed potatoes made with real cream and a glass of club soda.  These are all things that were given to me from the food bank I volunteer at.  I am so grateful that I am able to participate still.

Getting back to the Q in the barbe.  It just never ceases to amaze me how good food tastes on grill.  Especially wood grills.  Yum.  I am no expert.  But, I really like it.  From chicken to fish and ribs and beef and grilled veggies.

I want to thank God for creating that for us.  If He hadn’t requested burnt offerings on His altars, we would have never probably done it for ourselves.   I can only imagine the aromas of cooking meat coming from traveling temple’s courtyard when livestock was offered.  Only the best, of course.

Growing up I could never understand why Dad was so excited for summer.  Living in a colder climate, bbq is only during those few short months.  Yes, there was the broiler, but it just wasn’t the same.  Now, they have all those fancy gadgets that you can grill inside.  I tell you, it still isn’t the same.  I know mom hated it because that meant she had to clean out the ashes afterwards.  Either way, most of us looked forward to grilled chicken drumsticks, hamburgers and hot dogs from the grill.  I personally preferred the toasting marshmallows afterwards.

Living in South Florida, we can grill all year around.  Also, with the portable propane tanks, grilling can go anywhere.  When my children were little and we owned a home with a small back yard.  I grilled a lot.  I usually grilled a week’s worth of meat.  I had chicken on area, sausages in another and maybe steak or hamburgers in another section.  I even grilled a whole turkey one year.  That was a fail.  We even got the rotisserie that attached to the grill.  The best roast or chicken ever!!!

My dad used to be a meat inspector.  He did complain about ribs.  Said they were too much work for so little meat.  So, we really never had any except from the Chinese place.  You know, those little two inch things in some red sticky sauce.  I was introduced to real ribs here in Florida.  The softest, most tender meat is between the ribs.  I understand why people like them so much.  They are even easy to cook if you don’t have bbq.  I find I just throw them in a crock pot on low with all the seasonings and sauce I like.  Come home from work and dinner is ready!

Crock pot cooking……conversation for another day.

I just wanted to tell you to go to Aldi’s (or any other grocery store) and get a nice section of ribs.  Rub your favorite seasonings on them or not.   I use the disposable liners for my crock pot or you can use spray oil to make clean up  a little easier.  Place the rib rack on its ends and curl around.  If separate ribs, lay  in tic tac toe design.  Pour your favorite BBQ sauce over it.  Set it on low and forget it for 6-8 hours.    I have also used my dutch oven on 250 with the ribs in an oven for those who don’t have the luxury of a crock pot.  Keep the lid on  and only cook for 4 hours.

Either way you like your ribs.  Enjoy, smile and understand God knew what He was asking for with the burnt offerings.

As I was reviewing my grades for this last term of classes (99.5% and a 98.9%), I imagined myself talking to others who plan to go back to school or start college.  I have spent the last two years juggling 4-5 jobs (one full time), my husband’s care, my daughter’s care and my health crisis.  I have been able to go to the doctors, go on dinners with friends, fit in a few massages and even watch movies during this time.  I was able to get my work in on time and with good grades.  Admittedly, some classes were easier than others.   But, committing to taking classes online is a bigger endeavor than people think.

1.  Commit yourself to doing it.
2.   Follow the class syllabus.
3.   Look ahead through the course and see the assignments and the lengths.
   1. Playing off of that, schedule your doctor appointments around class breaks or lighter weeks
4.   Set a schedule for when things should be done during the week.  Example; Classes are Wednesday through Tuesdays for me.  All reading is to be done by Thursday and first Discussion Boards posts done.  Friday, reply to other posts on Discussion Board(DB).  Saturday, second reply to DBs.  Saturday, work on one paper, research another.  Sunday, breathe and rest (I also work that day).  Monday is for reviewing and submitting one assigment/exam, then research and type up another.  Tuesday, submit all assignments after reviewing.  Start Reading next week’s text.
5.   Try to always stick to that schedule.  It is strict, but it works.  Since I work a normal M-F week and then church and volunteer job on Sundays.  My Saturdays end up being my homework heavy day.
6.   Communicate to family and friends that this schedule is not flexible and that this is a goal. There will be time off in between courses and sessions that they can have your undivided time.  I let my friends and family know two weeks out when I have a break so that we can set dates to play, eat and hang out.
7.   Remind your family and friends of this committment each term.  This is temporary.  There is an end in sight and there is a reward at the end.
8.   Time mangement, time management, time management.  If you are unable to finish the reading for a class, skim it and take notes.  Go back later in the week and read it thoroughly if possible.  I will be honest, there was some reading I just never made it to.
9.   Take care of your health.  Getting sick makes focusing hard and doing assignments unbearable.  Get the flu shot, take your vitamins and get sleep at night.
10.   If you are the primary care taker of the house, invest in a crock pot.  It has become my favorite appliance.  I plop everything I need for dinner in it in the morning, put it on low, and return home to meal ready to serve.  Buy sandwich materials and cold cereals for those days you don’t have time to cook.  Macaroni and cheese or any pasta dish is easy to make.  Again, crock pot your own homemade sauce if you have allergies that need to be worked around.
11.   Remind your friends and family of your committment to this endeavor.  Enlist cheerleaders to help you through those rough weeks.
12.   Turn your cell phone off during exams and webinars.  Texting and phone calls need to be avoided during these concentration times.  If they are interested, they will leave a message and wait for you to get back to them.

I know I keep putting in about reminding family and friends.  I can not express it enough.  People forget.

Most of all, put each day before God.  Ask Him to help you through your assignments, exams and reading.   Sometimes it is the only way.  He always has time for you.

Since my last endeavor with this page, I wasn’t sure if I had a cold or not.  It was a cold that aggravated my symptoms.  So, I emailed the doc and he had me raise my prednisone until I got through it.  I just recently lowered the prednisone again.

Had my second set of labs done on the treatment plan.  Doc said they looked fine, even though my glucose was up.  He said that was the prednisone.

New symptom – tingling/burning tongue and lips.  Could be the sjogren’s making my life more interesting or the medication.  I guess I will have to wait and see.  I emailed the doc for clarification, but I think he went fishing for weekend.

I have been under an unusual amount of stress between being sick, my mentally ill husband and the increased amount of reading for finishing my degree.  Today was the first time I didn’t feel like I had clock over my head ticking.  I keep reminding myself that the finish line is Christmas.  I just have to hang in there until Christmas.