I am an (almost) retired home-schooling mother of ten blessings (9 of which I was allowed to raise here on earth) and suffer with Fibromyalgia and Lupus.

I have two more years left to teach!

My story of pain started in the fall of 2014 when I began to have a lot of pain in my sides and back, at times so excruciating that it hurt to walk or get into our 15 passenger van. After weeks of this discomfort, the pain began to branch off to other parts of my body. I have a high pain tolerance, so I knew it was time to see our family practitioner because something did not seem right.  Due to the pains I was having in my sides, tests were run on my kidneys as well as a spinal x-ray and CT scan. Nothing to speak of was found and I was told that if the pain continued, to come back in six more weeks.

Six weeks later I was still having pain and that pain had spread to all my joints. Another trip to the doctor proved beneficial. This time, she listened with kind ears, asked me more probing questions and then came over to me and began pressing various parts around my body, starting at the top.

Oh. My. Word!!

Some of those places made me cringe, some made me curl my toes and others made tears sting my eyes!  She pressed on places I did not even know hurt until she touched them! While I was regaining my composer, she looked at me and stated very matter-of-factly, “You have Fibromyalgia.”

What is that…?

She went on to explain that she had just performed a tender-point assessment on my body, looking for painful spots at specific locations, which included being symmetrical on my body. She said I had all 18 tender-points that hurt and with my other symptoms and having had the pain for several months, concluded that I did indeed have Fibromyalgia. She told me to Google this condition on reputable sites to learn more about it and come back in a few months after I had time to digest this news.

By spring of 2015, I was in pain 100% of the time, albeit, on varying levels. Yard work became a challenge for me as I would come in and sit down only to feel the pain just “crawl” out of nowhere and make tears flood my eyes. I had never felt such pain!!!

I went back to the doctor for more intensive blood work, thinking that there had to be some other answer; something easily cured and something I could handle.  I could not believe that at age 46 that I was going to live like this for the rest of my life. Lyme disease was negative, Thyroid functions were fine, and I was not deficient in anything.

I was sent to a Rheumatologist. More blood work. More assessments. More waiting. I had other symptoms now, such as fatigue, nose and mouth ulcers, and rashes. I learned that my ANA was positive with concerning patterns and titers, and my Anti-dsDNA was high. Those, plus all my symptoms, and it seems the doctor was thinking I had Lupus AND Fibromyalgia!

I have never studied about something as much as I have with these two things!  I have learned that things like weather changes, stress, emotions, monthly cycles, housework etc. can all wreak havoc on both of these conditions; the symptoms are so similar.

Then in the fall of 2017, another set of testing was done on me which came back saying my ANA was negative and that the doctor felt the Lupus was now in remission for the time being, as the ulcers were gone as well as some other symptoms. Well, after I praised the Lord quite a bit, I asked my doctor about all the pains, daily struggles, constant joint and muscle pain and immense fatigue.

His answer…

“You still suffer from Fibromyalgia.”

Oh, yes-that dreaded word!  I was secretly hoping all my other issues would just melt away…but at least for right now it is nothing else, right? RIGHT!

In January 2018, more testing was done. Have I mentioned that I have Psoriasis? That is a skin condition and I have had it as long as I can remember. With Fibromyalgia, all my joints ache so badly! I have been having trouble walking and my hips and joints feel as if they will fall off.  Recently ordered X-rays have shown some deterioration in my pelvis and mid-back, too.  Since my RA Factor came back negative, it is looking like I may have Psoriatic Arthritis on top of the Fibromyalgia.

Oh, my!

Well, I am living my life daily, moment by moment, moving more slowly, trying to exercise (!!!) and doing the best that I can.

Fast-forward to 2024 with a sudden accident that caused me to break my tail bone in two places. Add the death of an in-law and another stroke with my dear mother, lots of traveling with a broken bum, not being able to lift a thing for months, well, and 2024 was a mess.

Lots of stresses during this time and the need for higher doses of heart meds to keep the palpitations regular and trying to let my body heal, all kept me continually in some sort of pain… yes, Tachycardia from Fibromyalgia.

2025 is also busy, busy… and life never seems to stop. I do pace myself and try  to slow down…however, 2025 brought a flare to beat all flares! It began with a bout of pneumonia and then a stress test months later, which seemed to ascorbate the pain and caused a major flare!! It lasted for months! More bloodwork and my ANA tests are positive again, with more concerning patterns and titers and my Anti-dsDNA is high once more. This, coupled with too many symptoms to list, and it appears the Lupus is rearing its head once more.

Well, I’ve praised God in the good and will praise Him in the bad! God will get me through this!!

How I manage-

For years I have kept food diaries, work diaries, weather diaries, etc. These have been a great resource and proven to provide me with what causes my triggers and such. I now understand my body better than before. I know what my limitations are, what I should eat, what I should not eat, what I should not do, how to respond (or not respond) to stress, limit my dealings with toxic people, and completely rely on Jesus, etc.

I highly recommend keeping a diary.

So, after over six years of logging my life, I think I have a better understanding of how I now am, which helps me to live better each day. The Psoriatic Arthritis rears its head from time to time, as does the Lupus, with joint swelling and such, but overall, I think I’ve been managing as well as I know how.

So, about me…

I have been married to the love of my life for over 35 years. We went on to have 10 children, (9 here on earth)-raising and homeschooling them- We also began a family bluegrass music ministry over a decade ago. Currently we have two children left that are still living at home.

My husband works full-time, and is a survivor of a bone marrow transplant, due to a type of blood cancer- Myeloproliferative Neoplasm- which affected his red blood cell count and caused him to be exhausted all the time. In 2021 he underwent a bone marrow transplant, which was harrowing at best. We thought we’d lost him twice and it was quite a time! However, the Lord got us through! My husband’s illness had been a normal part of my daily life since 2014. No matter how I felt each day, (and I always wake up feeling like I have been run over by some form of transportation before my feet even hit the floor; Some days a bicycle, others a freight train!). I have taken care of him and the children, traveled to play music, homeschooled, and cooked and cleaned all while he was subjected to semi-weekly blood transfusions, and eventually chemotherapy.  I am happy to report that his cancer is in remission!!!! Yes, it was all worth it!!

As for me, I try to rest often. When I rest, the pain tends to crawl out of nowhere and those first few minutes of trying to relax, causes excruciating pain. It gets better as my mind melts into a catatonic napping state for a few minutes, only to have every joint in my body scream at me upon awakening. It’s a vicious cycle. I continue to study up and learn about this never-ending battle with my body and do my best to live with this daily. I have chosen not to take medications, micro-dosing, etc., but to rely fully on Jesus and self-pacing, rest and minimizing stress. I may have to succumb to some Lupus meds if the episodes persist… but so far, so good!

Things like cleaning the bathrooms, running the vacuum, cooking and tending to our nine+ acre homestead with chickens, dogs, hogs and horses, have pretty much been jobs our children have all been taught to do by my husband and me. Over the years, as the children have grown and left the nest, the chores have multiplied!

Now, I still love to do these things, but I will pay for it later when I can’t even walk up the stairs, let alone drag myself into the shower! Once in the shower, it feels great, but the task of drying off seems daunting and I wonder if the bed looks more appealing!

See, I have been a doer who loves to “do” and I struggle with letting go of that side of my personality.

I am also a planner who has always lived by schedules of my own making. (One would have to be very schedulized to raise all these kiddos efficiently, right??) Well, after 27+ years of home schooling and running the house like that, this Momma had to re-adjust her thinking. I had to make changes to my perfectionistic, go-get-’em personality.  I had to look at the reality of my health and I had to learn to pace myself.

Let me tell you that is still a daily struggle with me!

I love the feeling of a clean house, a weeded garden, and a made-from-scratch home-cooked meal! But this somewhat unrealistic personality trait now collides with my newfound limitations.  Pacing myself is key but goes against my chemical makeup.  I have adjusted for the most part, but it is a moment-by-moment struggle at times.

I now get sun rashes causing me to wear sunscreen, sunglasses, a large, brimmed hat and long sleeves outside, even in summer, and trying to avoid the hottest parts of the day.

I get what I call “Fibro-migraines” several times a month, which knock me out and encompass my entire body, joints and all. If you get these, you know exactly what I mean!! Ibuprofen has become a friend on those days and the only thing that seems to push it back so I can function.  I pray continually for it all to go away but know there must be a reason for this affliction….

I believe that this Blog is a part of that reason.

By writing to you all, it is helping me to reach out and let you know you are not alone in your suffering.

I am proud to say that in the midst of all the struggles with my new self and the adjustments to my life I have had to make that we graduated five more children from our home school, one who went on to join the United States Navy as a diver, one who earned his BS degree in IT in college while in the United States Marine Corp Reserves, another who joined the U.S. Marine Corp and is now a detective, another who is now married and living on a farm and another who owns her own business while living at home.

Our family has retired our family’s bluegrass music band, which slowed down due to COVID. But over the years, I was also the one responsible for creating the CD covers for the five CDs our kiddos have put their hearts into over the years. Our music can still be found on Amazonmusic.com.

For me, each day is still a constant battle with my old self and my new one.

But each new thing I read about Fibro and Lupus helps me bit by bit to understand, accept, and fight these cruel conditions.

Below are some pictures of our homestead which gives me peace.