Old Comfort

I spilled water all over my blanket the other night.  It was just water, but I didn’t want to sleep in a cold wet blanket.  Being exhausted from the day, I ripped it off the bed and proceeded to find another blanket.  At first I grabbed the fuzzy blankets that use for my lower legs.  They just didn’t feel quite right.  I finally grabbed this quilt.

This is a quilt given to me in the 1970’s upon the death of one of my mother’s sisters.  I was informed that this was a depression quilt made from old dresses of her sisters.  I have always loved using this quilt and had forgotten how comfy it is.

I slept really well that night.  It reminded me that new isn’t always comforting.  Sometimes it takes an item that has been hand crafted with love to fulfill the hole of lonelyness.

Old or new comforts, what is your “Go To” when you are feeling down?

I am sure God has provided you with something in your posession that fills that hole.  Mostly Him, prayer is always a good comfort.

 

You know your Sicker than you thought…….

So….the last couple of weeks have been discovering that the medication is working, but I can’t take on the world yet.

I am quickly figuring out what I can and can’t do again.  It seems like a never ending process.  I am feeling better.  PROBLEM!!!  I then decide that the floor is too dirty, the toilet needs to be scrubbed, and so on.  I take 2 minutes to do 1 thing cleaning wise.  BAM!  I am hit with exhaustion beyond all belief for a whole day and high blood pressure the next day due to the chemicals.  The nurse flat out told me to stop cleaning unless I want to die.  Then who is going to do it?  There are so many issues with cleaning the house and particularities that it isn’t even funny.  To me this is a serious issue.  I would like the house to be somewhat clean before I head to Orlando and again when ever I return from Orlando.

Meal Prepping – due to the expense of frozen dinners and high sodium, I have started meal prepping for the week for dinners for Eliud.  Recently, I added lunch.  That doesn’t sound to difficult.  It is actually exhausting.  Even though it is just making instant potatoes and boiling ravioli and putting them in the containers with their meat for the week.  The next day, getting out of bed is harder than usual.   I asked Dr. about it.  Found out the muscles in the arms are shorter (okay, I get that) and use more energy to move.  So, therefore making me desaturate faster than if I walked across a room.  (Hmmmm.  Reason not to cook?)

School’s out for Summer –  I am supposed to rest.  Thankfully, so far that is happening.  But, I have learned that when I first sit up, depending upon how long I stare at the wall, will gauge how my day will go.  The longer I stare, I have noticed the harder the day is energy and breathing wise.  I have had one day of rest.  I got to watch movies all day.  It was kind of nice.  I am looking forward to a couple more days like that.  It all depends on what happens in Orlando at the end of this week.

No Emotions Allowed –  I kind of knew about this one.  But, I had an actual experience a couple of weeks ago.  I got mad and sad to an extreme.  I almost started crying.  Instead, my body decided to start throwing up and turn purple.  It took me about an hour to get my oxygen where it needed to be.  My husband was great, when he saw what was happening, he brought me a bucket and kept busy until I had returned to being pink instead of purple.  Bottom line, walk the middle of the road regarding emotions.  I can laugh, but just not a lot.  It makes me start coughing.  If I seem a little cold, it is because I have to right now.  The twinkle in my eye is me laughing on the inside.  Maybe after I have new lungs, I can have an all out bawl and laughter fest.  We can watch a Walk to Remember to cry and Dude: Where’s my Car? to laugh our butts off.

Watermelon to the Rescue–  I have never really had a lot of leg cramps or restless legs until the last 6 months.  There was one point where I thought sleeping was for the fortunate.  I would fall asleep, left leg would cramp.  So, I would sit up and wait for cramp to subside, walk around or massage it.  Fall asleep again, right leg next and so on all night.  I asked Dr. if anything to help.  Maybe meds causing cramps.  After researching, cramps in legs from Lupus.  I was already taking extra potassium, I didn’t want to get that too high (that causes heart problems also).  Medication for leg cramps interferes with heart medications.  Yep, no go.  I tried stretching, didn’t help.  I did try moving my bath time later.  That did help some.  I don’t bathe every night, so I tried the heating pad on off nights.  Again, that helped a little.  Then one day I bought a container of watermelon.  I ate half one day and half the next.  No leg cramps either night.  I quickly ordered more for the rest of the week.  Again, no leg cramps now in two weeks.  I tried researching what was so special about Watermelon.  It has the usual fruit vitamins, but I had been eating other fruit (including bananas) and they had not  helped.  I finally found a little article about how watermelon has some trace amino acids in it that actually helps with leg cramps.  But, the scientists can’t figure out how it works.  WHO CARES!!!!!  It does work.  I am unable to find that article again, I wish I had book marked it.  I still have restless legs now and then.  But not the pain from the cramps.  So I have to buy some extra watermelon.  I think I can handle that.

I wake up each morning and thank God for allowing me to see another day.  I then thank Him for all the wonderful people and things in my life.  I try to pick a different circle of influence each day.  I don’t have many circles of influence, but at least I have people to be thankful for.  My friend reminded me today that I am still here because God isn’t done with me.  He has a purpose for me to fulfill.  I totally agree.

Thank you for your attention.  Understand that I am not a doctor, nurse or any medical professional.  I am sharing my experiences to hoperfully make yours better.  May you find the Watermelon in your life.

 

 

 

New Answers to a Turn for the Worse

Well.  Well.  Well.

That is about all I have to say about what went down this last week.  It was all kind of sudden and scary.

So, the Pulmonary Hypertension Specialist needed some tests to see which medicine will help my heart and since I am so frail and critical now, the hospital. So, I did as she requested and went into the hospital through ER.  Of course, insurance wouldn’t let me do a direct admit.  So, I did it the painful hard way.   Only to have my doctor appear before me in the ER after about 2 hours to hand out some bad news.  I had an embollism in my lung.  Holy Cow!!!  I almost fainted.  My husband had just left.  Which I was glad, he would have melted hearing that information.  I just had a CT scan not even three weeks before and there wasn’t one.  UGH!!!!!!

I spent the next three days in the hospital being poked and prodded for all these tests that needed to be run (some of it was for the lung transplant).   I had several EKGs, an echocardiogram, another stress test for heart that had to do with inhaling ionic particles, liver scan, tons of labs (and my arms show it), respiratory treatments, and even anti-coagulants and water pills.

The best part was the team that attended me.  My daily day and night nurses were wonderful.  I had my own room and bathroom.  I was kept comfortable, although not allowed to walk around (didn’t want to anyway).  Three meals, snacks and drinks were always available.  The technicians for each test were kind and curteous at all times.  I couldn’t have asked for better care.

The heparin drip caused some problems with bruising.  Still recovering 4 days later from all the blood labs.  That medication is due to blood clot in my lung.  Still dealing with the complications of it.  Did you know that when you are on anti-coagulants, you have to get labs every week?    I am currently having enough problems just getting to work and now you want me to go out and get labs weekly.  Some days, it just seems to be too much.

Saturday afternoon, I was released to go home.  Guess What!!! Insurance messed up the release of my new medication for the embollism and I had to return to ER until something could be figured out.  I was finally sent home Sunday night.  It was hard returning back to the hospital.  Everyone was flipping out in my circle of influence.  I finally stated that God wanted me at the hospital for a reason and that I had to accept that.  Once I said that to myself outloud, I was able to move forward with getting help.

One person asked me about it…I told her that sometimes God says “no”.  This was one of those times and I did not have the bigger picture to understand why.  Only He does.

It was a great time to connect with God, share God with those around me and be an example to others.  God has my back.  I know that I am unhappy with some aspects of what is going on.  I also realize there is a much bigger picture than me in this.

May you find your inner peace in sharing God and being an example.

 

 

Something isn’t right

I wanted to share with you my latest adventure.

I got a cold at the end of September that moved into my chest.  I haven’t been able to breath the same since.  So, after suffering for two weeks, I called the doctor after doing some research.

The big question is…

  1.  Is is a Lupus Flare?  Nothing showed in my labs that would indicate it.
  2.   It is Asthma?  Labs did state my eosinophils were high, so maybe.

Either way, steriods is the main course of treatment for both.    I did a week of steriods and started to feel better.  I am about two weeks after the steriods and I am feeling worse again with breathing.  My next pulmonologist appointment is the first week of January.  There are no available appointments before then.  I am told to go to ER if I am “doing that bad”.  “Doing that bad” is subjective.

Now the question becomes, is it the start of my decline?  Is it psycosomatic due to work?  Is it stress from work?  Should I take a day off from work?  Would it even help?

I don’t have any answers.  I pray to God every second I can to have the power to breathe.  I give myself permission to breathe.  I know He is the only one who can help me now.

I will keep you updated on my progress.

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.

 

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.

Masking About

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

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

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

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

I am afraid I am becoming a Mask Shamer.

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

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

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

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

Article Links:

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

by Shannon Smith     July 2, 2020

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

by Claire Gillespie   June 29, 2020