Keeping a routine is crucial when you suffer from Lupus and Fibromyalgia.

It can take days to recover from a routine change when you have Fibromyalgia and/or Lupus. When your routine changes, the pain levels soar, energy levels decrease and cognitive issues begin. The first clue my body gives me when there has been a change in my routine is the way I think… or rather, lack of the ability to think. 

Cognitive issues are real when you have Fibro and/or Lupus. Forgetfulness, like walking into a room and forgetting why you went in there is common, but how about losing your words mid-sentence? What about hunting the mind for words and definitions you have always used, but that day, you cannot remember what the word for an egg is. Your brain simply cannot on those days; it is a rough thing. 

I am in my fifties and perhaps an element of what I described is due in part to age. But if you have Fibro, Lupus, RA, PsA, etc., cognitive issues may not be age related but are a part of these conditions. I awoke this morning and just knew today would be a difficult cognitive day. Just typing this has taken me 3x as long as usual.

Today, I keep forgetting where the letters on the keyboard are and what I was preparing to type. I keep typing words backwards, like my mind cannot remember the correct way to spell. It feels like my brain is a thick patch of mud and the words are being sucked under just as soon as I can get them out. 

I am suffering from a routine change with cognitive and whole-body pains because last week I spontaneously decided to drive 3 hours round-trip to get my grandkiddos for a few days. For me, driving is always a bad idea as that will send me into a flare pretty quick.  Having 2 children under age eight is a definite change in routine for me.  I enjoyed them immensely, but my body was so done when they left! Thankfully, their parents came to get them, because if I had to drive them back again, it would have sent me over the pain-limit and energy threshold! Add a trip to the city for doctor’s appointments yesterday, and I have had no time to re-establish my routine and allow my body to rest.

The pain is so there…

Changes in routine might also be felt when you have somewhere to be, like a doctor’s appointment or the grocery store. These changes are anticipated changes and usually aren’t felt as much but still may cause a flare. Mostly, it is the out-of-the-ordinary changes that is rough on my body. The “extra stop at the store” just because you pass it and it’s convenient, justifying at the time that it’ll help you out later by not having to go out again.  That’s a dangerous mind trick and a tactic used to derail me quickly. I try not to fall prey to that blunder and stay focused only on what I have to do that day. I know my body will thank me later. 

Life can throw us curveballs. It is up to us to dodge them or catch them, but regardless, do our best not to get smacked in the face by them. 

Routine is important for everyone, but for Lupus and/or Fibro sufferers, it is crucial for our well-being. Routine helps us stay the course and have smoother sailing as the days go by. 

It is my hope and prayer that your day has no mishaps that may cause you a flare. We deal with enough pain on a regular day, don’t we? 

God Bless-

~The Fibro-Lupus Momma and Ten

I do my best not to dwell on my pain. Some days are easier than others. I have dealt with Fibromyalgia and Lupus for over a decade and pretty much know what affects me. Some days, though, are a beast!

During the past decade, I graduated 5 more kiddos from our homeschool as well as shuffled our family back and forth to many a music venue. I have seen my boys become men and three daughters become wives. The past decade has been unbelievable with pain as well as many challenges.

Currently, I am having a proud Momma moment. See, I have sons serving in the military and I listen to their stories when they call me-both triumphant and sorrowful. Today is a grand day! One son is fulfilling his childhood dreams today. This makes all my pain seem to dim a bit in the reality of his happiness! 

Pain is a funny thing. When we dwell on our pain, life seems bleak. When we have something else to place our attentions on, it helps so much!!!

To see his smiling face in the photo he sent me will forever be branded in my mind. Today I feel like I am a blessed Momma. Not all days makes me feel that way. It is true. I am only human… I have ups and downs same as anyone else. Most days, I am my own cheerleader. Today I am cheering for my son!

Let’s take each little victory as it comes!!

If you suffer from Fibromyalgia and/or Lupus, pain will be your constant companion. I hope in your neck of the woods you can find something to think upon to help your pain wan a bit. Ask the Lord to help you focus on someone or something else and see how that helps you. Even if it’s only for five minutes, that is an achievement and time not dwelling on how you feel. So, put your feet up and see how it goes!

God Bless- The Fibro-Lupus Momma of Ten

Yesterday I did a thing and today I feel the affects of it.

Did I know when I set out to drive 1.5 hours (each way) to visit my grandkiddos yesterday that I would feel completely run over today?    Well, yes and no. 

Yes, because ever since Fibromyalgia entered the scene for me, driving became difficult. Or rather, the repercussions from the driving became difficult. Once Lupus showed its appearance, driving became almost unbearable. 

No, because I always want to have the hope that it won’t happen, even though I know that hope is likely in vain. 

Today I awoke as if run over by the very car that I drove…

It is never a good feeling… waking up and left for road kill. Some people reading this who don’t suffer from these conditions, might say “Oh, I feel that way in the mornings…” or “I know how you feel.” God help you if you end up with Fibromyalgia and/or Lupus because even if you think you “know” you wouldn’t know how to survive until you know. I mean, you truly wouldn’t based on what you think you know now.

Lupus and Fibromyalgia sufferers are a strong people. We have to be.

If someone were to walk even an hour in our shoes they would wonder how we were walking at all.

This is not being overly dramatic. This is trying to explain just how awful these conditions make a person feel. That burning, aching, worn-out, exhausted feeling all.day.long.

You may have heard it said that to even come close to understanding how these conditions make a person feel, is to imagine that you have the flu-with extreme body aches, nausea, (maybe diarrhea), overwhelming fatigue, possibility a fever, and the inability to get out of bed. It’s like that for a suffer every day.

… Except that we do get up out of bed and we do try to live life, all while feeling like we have the flu. Sure, we have a smile on our face. That’s because it’s the right thing to do and it makes us feel cheerier, but what you don’t see behind the scene is the struggle. Fibromyalgia and Lupus Warriors have learned how to put on a strong front. We have to. We are at the front of the line! The arrows and the flaming darts are all aiming at us 24 hours a day, 7 days a week.

It’s a rough way to live.

So here I am, feeling like the Coyote underneath the ACME anvil… and as horrible as I feel, I have memories… wonderful memories of yesterday with a beautiful daughter and her children… and that makes this morning just a wee bit more bearable. 

Those precious memories are what comforts my soul when my body is burning and hurting today.

So, if this has been you, please try to have no regrets. Muster through the pain!! We are warriors!!!!! So, from my pain to yours– Cheers! 

God Bless- the Fibro-Lupus Momma of Ten 

I’m scared. 

Not scared that someone will harm me. Not scared of dying (because I gave my life to Jesus and I know He has saved me and I will go to heaven). Not scared of animals. Not scared of anything like that. 

I’m scared of what I do today and how it will affect my tomorrow.  

I’m scared of doing things I love knowing how it will make me hurt later. 

I’m scared of letting people down when I have to cancel out. 

I’m scared of getting in the car and running errands, knowing that tomorrow and subsequent days I will hurt from the driving, getting in and out of the vehicle, walking in the stores…  all of it. 

I’m scared of hurting more than the normal day’s hurts because I know how badly the regular day-to-day can make me hurt.

I’m scared that doing normal things, well,             -A-N-Y-T-H-I-N-G- , and what happens to me up to 48 hours later. 

I’m scared of doing. 

Now, here’s the thing… I DO THINGS.

I exercise and/or stretch every day. I walk 1-2 miles outside as weather allows.  I ride an Airdyne bike 5x a week, 2-6 miles per day. I bake and sell sour dough bread weekly. I sew pillows and curtains. I paint for fun. I do laundry and cook. I vacuum and dust. I iron my hubby’s work shirts. I pick up dog-poop… Yep, with a funky contraption my daughter bought me, but I pick it up. 

I DO THINGS. 

And all those things make me HURT. Sometimes,  I hurt so badly I cannot think clearly. Sometimes I need a nap. Sometimes I crash-out on the couch without realizing it. Sometimes it’s all I can do to make myself get up and going. Sometimes I don’t. 

Some days are better than others. Some days are worse than others. Some days I can, and some days I cannot. 

I am scared of the days when I cannot because it HURTS. 

I’m talking heating pad, knee, elbow, wrist, ankle and back braces-the whole shabang! I’m talking, barely mobile with the inability to think and having to rely on my daughters for things,  etc. I HATE relying on anyone. I miss me. 

I lost myself somewhere in the pain of living. I think that’s what scares me the most. 

So, to all of you who are scared of doing for fear of the repercussions it will bring-I get it. 

Fibromyalgia and Lupus are two of the most misunderstood conditions out there. 

We need to make people aware and show them we are warriors. Anyone who really knows us, sees the warrior inside. 

We need to keep doing! Keep going! Keep resting! 

Whatever it takes to keep living, despite being scared of the pain. 

My peptalk here is probably more to myself than to you. But there it is.

Stay Strong!

~The Fibro-Lupus Momma 

I am beyond frustrated about chronic pain. 

I never know what a day will bring forth… here is an example of my week so far…

This past Monday, I had a horrible pain day.  I could barely move, my brain wasn’t working well and I had what I call a “Fibro Migraine”  (that all-consuming pain where my joint pain tries to stretch and reach the pain in my lower neck and temples, causing a “connect-the-dot” sort of pain that radiates EVERYWHERE). All I could do was rest.

On Tuesday, I had to go into the city to a doctor’s appointment with my husband, and by the end of the day I was completely worn out. By the afternoon, the “connect-the-dot” game was upon me again.

On Wednesday, I woke feeling relatively good, and decided to use my creative genius to start a sewing project that I have put on the back burner for months. I was in a groove and had a very good day with creativity, which is a mental release for me! I was so happy and almost felt normal. 

Well, today is Thursday.  I awoke feeling pretty decent considering I sewed the day before… then, about 9am and feeling okay, I walked with my daughter to the neighbors (2ish acres away) to deliver some home made treats my youngest daughter had made. We stood talking for about 20 minutes in the sun and walked back. On the way back, my joints started screaming that “all-too-familiar, burning scream-cry.” I struggled up the hill into our yard and was winded, hurting and could barely move. Once inside, my body gave way. I lost mental ability and any creative drive to complete the sewing task, as was my plan prior to the walk. I HURT.

At 11am I collapsed on my bed and fell fast asleep. 1.5 hours later I emerged from that with a horrible, burning, almost gnawing pain in my hips and joints. 

Pain upon awakening from a nap is nothing new, but always disheartening to feel. 

I am so frustrated with fibromyalgia and lupus pain! I never know anymore what I may do that is going to cause issues. I have dealt with these conditions on various levels for over 10 years and I thought I had a pretty good understanding of what I did and the repercussions that would follow. But for the past 6 months or so, I would have to say that all bets are off.

Nothing I do (or don’t do) makes sense anymore where my pain is concerned. 

I have to take everything moment-by-moment in my day.  I do my best to rejoice in the little victories! I can definitely not allow my mind to fall into the trap of frustration to the point of sadness.

I need to “gird up my loins” and continue on.(Notice the pun?)

Easier said than done, but I MUST. 

May God Bless you and your day and may your tomorrow (and mine) be a good pain day.

God Bless- The Fibro-Lupus Momma of Ten

My 19 year old daughter made this AI picture of how she sees me

Apparently, I come across to her like a warrior.

She said the armor is like the symbol of the strength she sees in me, showing that I can beat anything and any pain or swelling the day brings forth.  Kind of like putting on the “full armor of God,” but inside, I am hurting and don’t want to let my pain show. The armor helps cover that up; Like the armor is my front to show that I am strong, but on the inside, I am hurting and won’t show anyone.  

It’s a rough business, staying strong. 

My God helps me get through each day, and in many ways, that Warrior Mom is wearing the full armor of God, minus the shield, which Jesus gives me as I need it. 

I am blessed to still have two daughters living at home (ages 17 and 19 respectively). These girls are a source of joy to me in my pain. They help me daily with cooking and chores, allowing me to rest on a heating pad or ice pack(s) as needed and they make me laugh (which hurts! but laughing, they say, is good medicine). These sweeties (and my dear hubby) will also give me back rubs when I am at my worst… and they have seen me at my worst.

I don’t feel like that photo at all, and it makes me humbled to see that is how I am portrayed through the eyes of a daughter. 

My other kiddos (who don’t live close by) have no idea how my days of pain can be. When they come to visit, that armor goes on and well, you get the idea. I am the Mom, after all. I am NOT supposed to be the one in need, I am to be the one who does it all, like I have always done pre-Fibro and Lupus and who is always strong and there to listen and help. I do my best to keep that armor on!!

I hope whoever reads this, that you have someone in your life that helps you and makes you laugh. Maybe they can see your warrior armor, too.

 God Bless- The Fibro-Lupus Momma of Ten

Today I awoke to rain. And not just a little rain, but a continual dropping. The forecast says it is to rain non-stop here in the Midwest for the next 10 days and that means nasty pain for Fibro and Lupus sufferers. 

It is hard for me to manage pain on good weather days, but rain brings on a whole new layer of joint issues that cannot be described. Add Lupus issues to that and the swelling starts, neuropathy in the extremities, barely able to maneuver laundry, dishes, etc. Today my right knee is swollen causing neuropathy in the right calf. My spine has also been giving me fits, and a heating pad has become my best friend.

I had an MRI of my upper and lower spine last week. Anyone who sufferers with Fibro and/or Lupus and who has had an MRI knows just how badly your body locks up from having to stay still 100% still when you are in the dreaded MRI tube. Add claustrophobia to that scenario and let’s just say that “mind-over-matter” didn’t even come close to what I mentally endured. Thankfully they played music from Mercy Me to help calm my mind and for me remember that God was in control of my mental situation. Needless to say, I am very thankful it is over-and yes, God got me through, but not without a fight over my mind for almost an hour!!  Results in 2 weeks… 

What are they looking for? I believe the doctor said he was looking to ruling out MS, DDD (Degenerative Disk Disease) and Lupus related myelitis (spinal cord inflammation) and see if maybe it’s only osteoarthritis… ONLY… 

For the benefit of trying to be healthy while dealing with pain, I exercise.

I stretch daily and ride an Airdyne bike or use a treadmill 5x per week, muddling through the pain as I force myself to do this daily torture in the hopes I am improving my overall health. I’d like to hope that is the case, since I feel like death-warmed-over when I am finished each day. But, hey! I am trying… and “they” say it helps…  

So, today it is raining and I am making dough…

I have managed to make 4 loaves of sour dough dough to be stretched and folded throughout the day. Tonight, I will roll them out and to be placed in pans to rise for 10 hours. It will be baked in the morning. Sour dough is all the rage these days, but I have been making it since before it became popular. It has a low glycemic index and, thankfully, does not rock my blood sugar. I make regular sour dough and cinnamon raisin sour dough loaves. Both make great toast, sandwiches, french toast or just slathered with plenty of butter!

I hope today is dry in your neck of the woods, and if not, I am praying for your pain levels to be manageable. Maybe you will bake some bread, too.  If not, go buy one of those freezer loaves and let it rise, then bake that. The smell of it baking is worth the effort, just saying.

God Bless- The Fibro-Lupus Momma of Ten

The pain I experience today may not be the same pain I have tomorrow, or what I had yesterday. 

Depending on what I do will depend on how my pain will be. The funny part of this (sarcasm) is that even if I spent the day resting, it still causes pain. Getting up from a chair is like pulling myself out of wet cement, which seems to harden immediately, and then it is like it slowly falls off as I start to walk-looking zombie-like as I do. 

Again, just sitting causes unbelievable pain. 

Lupus and Fibromyalgia share similar symptoms, with Lupus taking the lead for long-term and internal organ, nerve and spinal-health issues. Specific blood tests ordered by a doctor will check to see if there are any auto-immune disorders you may be suffering from. As of this writing, Fibromyalgia hasn’t made it to the auto-immune category, but personally, I feel it should be. 

What we do today directly affects each hour of every day and night and that pain can last for days.

Everyone’s home needs to be cleaned and maintained. Bills need to be paid, taxes done, and appointments need to be made. Bathrooms, kitchens, and other rooms need cleaned and/or vacuumed, beds (should be) made-For me, a made bed is soothing to my mind and makes the room not seem so messy. Then there the dogs and/or cats that need fed and watered, let out… let in, etc.

How about those dishes??? There are ALWAYS dishes to wash, or a dishwasher to load… and unload. There is ALWAYS laundry to be washed, dried and folded…and put away. These are all routine tasks, but for a Lupus and/or Fibro sufferer, these tasks are very challenging. Most of us cannot afford a housekeeper, so we must plan out our days to get these things done. Our mental state can hang in the balance just looking around at all that needs done, knowing how limited we really are physically to accomplish the tasks at hand. 

Maybe we don’t want to admit we need help or we may feel we are complaining, so we just do it.

But we will pay for it 10x over with pain. Pain that no one understands. I think Lupus and Fibro and other CPD sufferers are the strongest people out there. We just do. We just smile. We just do our best, and a lot of times our best is better than a healthy person who we hear complaining about how tired they are from doing this or that-all while being healthy. (But that will have to be another post…)

Also, eating is kind of important. Of course, we want to eat healthy, so that means cooking. For some of us, this is a daunting task. It also means grocery shopping. Fortunately, we live in an age of grocery delivery, which helps, but sitting in front of a computer, tablet or phone to shop and purchase the items needed can ricochet our bodies into a flare within minutes.

Shopping of any kind is a horrible deal for Lupus and Fibro sufferers.

This week I have tried to rest often, pace myself and make an honest effort to put myself first. Heating pads on the recliner, comfortable walking shoes for the house to help with plantar fasciitis, short walks with deep breathing, not lifting anything heavy, being careful not to bend over too far or stretch too high, hot showers to help me sleep, you get the idea. I would LOVE to say that all that “pampering” has helped me…well, unfortunately, no.  I still HURT. I always HURT. It also appears I always will HURT. 

Yes, this post should be uplifting… 

But these posts are real. These posts are from a real person with real pain issues, talking candidly. 

If you suffer as I do, you know what I mean.  

May the Lord bless you with comfort and strength. It is how I keep going. 

God Bless-

~The Fibro-Lupus Momma

Last week I finished a television series called Gilmore Girls. It took me a year and a half to finish it. For some of you, that may seem like a long time. For others, they may be thinking “I binged that in 4 months.” Regardless, that is how long it took me and I thoroughly enjoyed it.

I loved the relationship between the main character and her daughter. The sincerity and love that passed between them was awe-inspiring and something I definitely did not have when I was growing up. Their closeness of friendship was often tear-jerkingly emotional, yet comical and entertaining all in one episode!  It was bittersweet to see the relationship change through the seasons yet still remained (for the most part) a close bond of mother and daughter.  The relationship between the main character and her parents, on the other hand, was rather trying at best. You could feel each side’s emotions in a semi-tolerative, somewhat enduring, yet relatively amusing and sad sort of way that I think most people can relate to on some level. 

The writers did a good job with the dialog, and my interest was held for many binge-worthy hours of pain.

Yes, having both Lupus and Fibromyalgia is a rough business to manage day-to-day. Rest times are crucial to our survival. Good shows like that are helpful in aiding those dealing with chronic pain by keeping their minds off all the other issues they deal with daily. I know the show helped me!!

God Bless- ~The Fibro-Lupus Momma

Being an adrenaline junky is not healthy, so when that adrenaline monster rears its head, be careful or it will consume you!

Unfortunately for most Fibromyalgia and Lupus sufferers, adrenaline is how we can get anything done. 

Once my adrenaline kicks in, whether in creative thought or out of necessity, my body seems to abandon all reason and will kick into survival mode causing my adrenaline to overtake me and my mind. I will then snap into action, like in a rushed trance, and accomplish a lot in a little time. 

Then, after I come down, I crash-and crash hard. 

My husband I recently baby-sat two grandchildren at the same time. Even with two teenage daughters still at home to help, I was hurting the whole time. My adrenaline was on high because of the responsibility alone. But, after 3.5 days of non-stop cooking, cleaning, playing, bathing, washing and push-push, and then 3 hours in a vehicle to return the darlings back to their parents, my body was DONE. 

Today, I have made myself stop and rest, because I just can’t keep going at that pace anymore, and my adrenaline still seems to be pumping through my veins trying to slow down to the turtle-like pace my body is insistently and currently moving at, fighting the adrenaline monster back into its cave at the same time. 

Deep breathing, a jumbo heating pad for my spine and back, heated rice socks, lots of water and some Christian music is the order of my morning.  

Yes, Lupus seems to be targeting my spine over the past week. The week prior, it was my knees, with both swelling up nicely, and the week before it was my shoulders, which I could barely lift. 

I never know what it will be each day or week. But today, I rest in a quiet house-alone. On a normal day I am never alone, making it harder to rest-but not today… today I am alone with my heating pads and music…

Today, this gal will stop and breathe. 

As I look out my windows at the sunshine dancing patterns of shadows through the sleeping tree branches and casting those shadows upon the snow, I am suddenly thankful for a warm house and a safe haven from the world. My family is good to me and urges me to rest when needed, and for that, I am blessed. 

So, today I breathe and will keep watch for that adrenaline monster. It will get me every time, if I don’t keep a wary eye out.  

So, from my home to yours, may you get through today without adrenaline. Pace yourself and try to take it easy. 

~The Fibro and Lupus Momma of Ten

Today is January 5, 2026.

For some it means returning to work after a long holiday. For others it means seeing their children off to school after their Christmas break.
For me, it means the beginning of of a new year and back to home schooling!
I’ve home schooled for over 28 years and still enjoy it very much. Reading aloud, learning along with them,  watching the light bulb go off when they finally “get it” -all the best! 

My Fibromyalgia and Lupus pain have been my constant companion for well over a decade of that. Throw in a Bluegrass Gospel band for a decade and it was quite busy! 

Yes, my life has slowed down with sons serving in the USA in the military and most daughters married and running their homes, but my pain never leaves. 

Yesterday I had the rug jerked out from underneath me with what I call a “Fibro-headache”… that all-consuming, joint-encompassing pain that HURTS and makes you bed-bound to (try to) sleep it off. Ibuprofen is my friend on these days and, although it doesn’t make it leave completely, it will take the edge off.

Those are rough days and not the best way to start to year.  

We all know that Fibromyalgia and Lupus don’t take a break, so should I be surprised? (Chuckle of sarcasm).

Alas, today is a new day and I will take it one moment at a time, leaning of Jesus for strength and endurance.  He always delivers! 

Peace and Happy New 2026 to you!

God Bless-

~The Fibro-Lupus Momma of Ten

As I sit here on December 31, 2025, I find myself pondering the year. 

For me it was not a good year as I count years to be. My health wavered from the beginning, starting with a lot of stress dancing around my life that I tried not to let affect me. This was not a simple task as I was asked in late January to help plan my daughter’s wedding for the end of March. This date quickly changed to 2 weeks later because the couple thought “Why Wait?” (what…?) I was also to make the cakes and be a supportive Mom.

Okay, so my body cannot do fast anymore and saying “No” was not an option, either.

Add all this, plus a ton of emotions from a “bit” of a Bridezilla, and my heart decided to act up, causing palpitations and irregular heartbeats, even more fatigue than usual, and a major melt-down of my emotions which made my heart jump and dance around-and it scared me. This was due in-part to the circumstances, in part to my personality and the personality of the bride, and in-part to me dealing with the fact that once-upon-a-time I could have put this all together in no time, and I AM NOT THAT SAME PERSON ANYMORE thanks to Fibromyalgia and Lupus. That emotional upset caused my Fibromyalgia to wreak havoc on my body in ways I can scarcely describe here. 

So, I had to swallow those thoughts of who I was, accept who I now am, roll up my sleeves and only do what I could physically handle, even if that meant letting down someone. But I did my best to make a positive memory for all involved…  

One month later a sickness swept through our home causing me to get pneumonia, which knocked me out for weeks and weeks. Due to the wedding heart episode, a treadmill stress test had been scheduled for my heart and because of the pneumonia, was pushed into mid-May. That test wreaked havoc on my Fibromyalgia, causing me intense pain for weeks and it did not feel like I was only dealing with Fibro, so I decided to message my PCP for blood tests to see if the Lupus was active and in cahoots with the Fibro because the pain and swelling was horrible!

Sure enough, the testing showed the Lupus was active again and wrecking my world once more. 

Due to the stress test, the Lupus decided to attack my hips, causing me so much pain that I could scarcely walk, sit or drive and I had to attend a family reunion at the end of June three states east of me, to which my husband drove. After I got back, the pain was excruciating, so round of steroids was ordered which did amazing things! Why-oh-why are they so bad for you?? (sigh) During that round of steroids, I had to leave again and, this time I drove across five states west to take care of my mother for a few weeks before driving back home. The change of scenery was nice, but my routine was off and subsequently, so was my body. The way I looked at it was I already felt out-of-sorts and not myself, so what was something else???? I pushed through as I usually do, using the pool to help relieve as much pain as possible, if only while I was in the pool (sigh again). 

By the time I got back home in August, I was spent-physically and mentally. The Lupus was still rearing its head, attacking random joints at its will and I knew I was still not just dealing with the Fibro. Frustrations with new doctors and more testing caused more issues for me, including a high A1c, pushing me forward into Type 2 Diabetes, all from that stress test in the spring. Diet changes and well…

(Oh, did I mention my heart handled the stress test very well and is working fine? Well, fine as long as I continue to take the Metoprolol and manage stress around me… but that test brought so much bodily torture and issues with it that I still feel buried in pain… It never stops, does it??) 

 Summer continued with a late home-school graduation celebration in August and then I finally settled into September, with birthdays and home-school with my 11th grader, the holidays and finding peace in the chaos of living with a broken body. That sentence is an Oxymoron, right???

December helped me to slow down and catch my breath a bit.

Yes, as of today, I feel a bit like my old semi-manageable Fibro-self, with the Lupus attacking random joints and making me erratically swell up with pain at the most unreliable of times. I have forced myself to stretch and exercise each morning or afternoon for the past two years as best I can, knowing I am helping my heart and probably my body, even if my body cannot tell that I exercise at all.

I mean, let’s be realistic. When you have Lupus and Fibromyalgia, you NEVER feel well.

I exercise to help my muscles stay strong and flexible and my heart to stay strong. But exercising HURTS and does NOT make me feel better AT ALL. For me, it is a mind-over-matter sense of “at least I am doing something each day to TRY to make it better.” It’s a mental thing and that alone is taxing and somewhat debilitating. 

Trying to be positive is part of living with Chronic Pain Disorders and can be exhausting in itself. 

Heating pads, rice socks, compression gloves, knee, ankle and elbow braces, foot arch bands, comfy “bummy” seat cushion, electronic foot massager, massage gun, S-hook trigger point reliever, etc. are all a daily part of my life. 

So, 2025 was a rough year for me. I pray that 2026 can bring slower days with self-pacing and rest-as-needed-days, minimal stress in my world and a way for me to heal my body, soul and mind, if only for the winter. 

To all you fellow Lupies and Fibro sufferers, may 2026 be all that for you and more! 

God Bless-

The Fibro-Lupus Momma of Ten

A lot of Fibro sufferers speak of how much pain Fibromyalgia can cause. Many report that they are bed-bound or couch-bound and can barely move. Is this due to them “giving in to the pain” and choosing not to deal with it, or their lack of motivation to persevere through the pain and keep going?   

No judgement calls here, just asking. 

For me, I have found if I keep moving, I do better than sitting or lying down and doing nothing; my joints actually hurt more when I do that. It is quite difficult for me to get to standing once I am down and trying to walk after sitting hurts until I get moving, lubricating those joints! And because your joints stay lubricated when you move, it helps lesson the pain to keep moving. It’s a backward issue, because once we sit down, the pain crawls out from those joints and can be excruciating. Some people prefer to stay down so they don’t have to endure the pain, while others prefer to keep moving to keep the pain from dominating them upon the sit-down. 

NO ONE understands this better than a fellow Fibro-sufferer (me!!).

Keeping on the move conjures up images of hustle and bustle, never stopping to exhaustion. This is not the vision I am trying to convey.  Instead, picture small tasks throughout the day by starting with a list of necessary things to be done and numbering them in order of priority. Chisel away at that list as your body can handle, stopping often to practice deep breathing, reaching up to the ceiling and slowly bending down as far as you can. Repeat as you are able.

It will hurt!! But it will also help. 

Some people don’t get any of these options as they have to work outside of the home-their motto is “no rest for the weary” and that’s rough! Likewise, there are those days when you have to be on the move due to appointments, commitments you absolutely have to keep, errands that cannot wait, etc. Those are rough days, too.  But on the normal day-to-day, keeping a pace that works for you is crucial. 

Now, let’s talk brain-fog! Keeping on the move will also stimulates your brain and can minimize brain-fog. There will be those days when the Fibro brain-fog is evident and nothing we do helps; we are caught in a sort of trance-like fog and nothing computes. On those days, I like to turn to my journaling Bible. It is a good way to read God’s Word and do some therapeutic coloring as well. 

Bible journaling helps with those Fibro brain-fog days!

I am a King James-er, so I use this journaling Bible. I love the all the drawings and scripture letters to color, too. Try it! Any simple coloring pencils will do, the ones I use are fantastic, smooth and rich in color. Click here for those. 

If you suffer from Lupus as well as Fibromyalgia, then a lot of the above won’t apply as Lupus causes a host of other issues, including joint swelling, internal issues, etc. I would like to encourage you to stay moving as often as possible, but if you are like me, moving with Lupus can include the high probability of needing a wrist brace, foot arch sleeve, knee compression brace or ankle compression sleeve, back brace, TENS unit, portable neck heating pad, etc. If you understand this, then you know exactly what I mean!!!

It DOES make moving more challenging when you also have Lupus!!!

So, whether you choose to spend your day on the couch out of necessity or just giving your body a rest, or you choose to be up moving around to keep from locking up, or you must work and/or keep commitments, may the Lord bless you with minimal pain today! 

God Bless-

~The Fibro-Lupus Momma of Ten

Mind-over-matter is a rough business.

Back when I was first diagnosed with fibromyalgia, my pain journey started out relatively slow. The normal things I tried to do caused me to hurt… but, I adjusted my mind to this new challenge and ‘marched’ on through the tears of pain.  Then, the pain got progressively worse and it became harder for my mind to process through. My marching became more of a trot… then a brisk walk… then a hobble, and now I can barely get going.

Mind-over-matter became my motto and I did my best to press on, because, we all know that life doesn’t stop for anything. That was in 2015. 

Fast-forward to over a decade later and “mind-over-matter” has become a real struggle for me. I am my own cheerleader. It is hard for me to be the one in the game and also the one cheering myself on at the same time. My battle is daily… not just with pain, but with my perseverance… which seems to be wanning. It is difficult to push through all.day.long. I mean, I already do that. But it wears on the mental soul. 

I push to get out of bed. I push to go exercise and do my stretches. (The pain will always be there, so I have been pushing through with exercise for almost 2 years to help the rest of me). Some mornings it’s all I can do to even get dressed and some days, it’s exercising with tears of the “good” pain, as well as tears of frustration because it hurts to do anything.

Some days it’s tears of utter irritation that I have to have mind-over-matter in the first place. 

Some days I want to throw a tantrum and hammer a thousand nails into the wall and get all that frustration out. But, as anyone with chronic pain knows, that is NOT the answer… it would only debilitate me and make my joints and body hurt worse, not to mention the mental anguish from giving in and dealing with my self-inflicted “more pain.” ha-ha

I will admit though, I have scrubbed many a bathtub vigorously to get the frustration out. I will also say that at the time, it felt GOOD!!! But… an hour later… throughout the night… the next day… I’ve paid for it. Paid for it in PAIN. The inability to be able to move after such a thing as cleaning a bathtub, pulling weeds, raking leaves, mopping a floor, running an vacuum, etc. no one can understand, except by those that have Fibromyalgia, Lupus or other arthritic issues. It’s a bad wrap. Truly. 

Mind-over-matter is a rough business. I pray daily for strength and perseverance of mind.

My newly adopted motto is in KJV Psalms 118:24 which says “This is the day which the LORD hath made; we will rejoice and be glad in it.”

Yes, it hurts to wake up and then remember you hurt. Therefore, I am also trying to have the motto of “The Power of Positive Thinking.” I’ll let you know how that’s going in another post. ha-ha. 

God Bless- The Fibro-Lupus Momma of Ten

Life does not stop simply because we want it to. 

Even before I was diagnosed with PsA, Fibromyalgia and Lupus, life never seemed to allow for breaks. Back then, vacations were nice, but the looming feeling of going back to the daily routine always seemed to over-shadow the vacation. Now, vacations are more about making me as comfortable as possible while traveling and while at the destination. The pain never stops, but the change of scenery can be a good thing. 

I am visiting Arizona in July. For those that know how HOT it gets in southern Arizona in July, you may be wondering WHY I would choose to visit in the hottest month of their year. The answer is simple. My dear momma had her 4th stroke in the early spring of 2024 and my brother, who lived down the street from her, gave up his life to move in and care of her. I arrived from 5 states away to give him a much-needed break and make precious memories with my mom. 

As a sufferer of chronic pain, this feat has not been easy. I brought along with me my 16-year-old daughter to help with the chores and the cooking allowing me to spend more time with my mother. I still wake up feeling run over, and my pain has not stopped while I am here.

My daily routine is off and honestly, my pain is soaring, but I know I am where I am supposed to be. 

I have been trying to take things one moment at a time. The Lupus flare that attacked my hips and lower back, causing me unbearable pain, was halted just before my trip across the country, due to a nine-day course of steroids. It’s been 2 weeks since the meds ended and the pain has been trickling back at a steady pace, each day wreaking havoc on my joints. I also have nose ulcers which have developed and are quite painful. Lupus is NOT FUN. Add the normal Fibro pain and you have a recipe for the scene out of The Wizard of Oz when the Tin-man asks Dorothy for his oil can…

Since I’ve been here, my body has been asked to do things I would not normally do, like move boxes, bend over for long periods of time, squat, sit cross-legged, reach for things higher than I can manage, grocery shop every third day for fresh produce for my mom, help her with her daily PT, take her to the pool for PT, etc. By the end of the day, I feel completely run over and can scarcely move and then… it all begins again. I try to hide as much of my discomfort as I can, moving and doing all day, knowing I am helping my mom. But when she goes to bed, my body just screams!!!

I am not complaining, just stating how it is. 

Chronic pain sufferers know that life does not stop. We just bulldoze ourselves through the day and each situation. Our time to rest comes in the little moments we MUST find or the days when we know we don’t have to “do.” When someone else needs us, we give all we can, and do our best, even when we feel like the fight has left us. 

Mind-over-matter is the motto I strive for.

That motto takes its toll on my mind, body and soul. I must keep going, even through the silent tears that no one sees. Ministering to others is a good thing for the soul. God will give me the strength to keep on, keeping on! He always does. God is holding on to me today, even when I feel I need to be there for everyone else. 

I seem to feel I need to hold it all together every day and sometimes that makes me feel alone, but I know God wants me to slow down and allow Him to help. When I feel tired, God is helping me get through the day. When I am in pain, God is holding me; it is my job to allow myself to “just be held” by God.

The song, “Just Be Held” by Casting Crowns comes to mind…

This week I have been driving across 6 states. 

As of today, I have one more state to go before I reach my destination. Recent blood tests show that I am in a Lupus flare. Driving with Fibromyalgia is hard enough, but driving in a Lupus flare makes things a “bit” more adventurous! The steroids my PCP put me on are no more and my body definitely feels like it!! One day at a time, one minute at a time!!

I am headed west to take care of my mom for a few weeks. This trip was planned way before my (new-again Lupus diagnosis); You know, the diagnosis where I finally BELIEVE I have it.  

I am the driver on this trip, and I made sure I stopped every 2 hours to walk a bit and to keep blood clots away, per my doctor’s advice. I spent no more than 6-7 hours per day in the car and stayed at Holiday Inn Express Hotels because, in my opinion, they have the comfiest beds for the price. 

My right knee swelled on day one, so I used the knee brace I brought with me. Each night I have used the heating pad I packed to help soothe my aching hips and lower back. I am traveling with my teenage daughter, so I even put her to use, and she has helped rub out my tired, aching, arm and shoulder muscles from driving, as needed. 

Sunscreen has become my new friend, and since I am going west, it will definitely be needed!

So, as you travel this summer, be sure to pace yourself, walk and do your best each day!  I am doing my best to take my own advice! ha-ha

We are Lupus warriors, after all!

~The Fibro-Lupus Momma

Back in 2015, I was diagnosed with Fibromyalgia and then in 2016, I had a Lupus diagnosis with positive ANA and Anti-dsDNA testing, along with the classic Lupus symptoms, but I honestly decided that was more than I needed to deal with because, at that time, my husband had blood cancer and I was already in over-my-head with all that, so I denied treatment with Lupus medications, thinking… “They cannot be serious!”

The Fibromyalgia was enough to mentally process and handle on top of my current life at that time. The pain was bad, and I was learning to cope, building up my pain tolerance along the way. Testing continued through 2020 to show my ANA and Anti-dsDNA as positive, but again, I chose to ignore… In 2021, these same tests came back negative, so I wrote it off as a Lupus misdiagnosis and moved forward in Fibromyalgia pain. 

Also, in 2021 my hubby went through the harrowing journey of a bone marrow transplant. I am proud to say, that after 4.5 years of ups and downs, GvHD of the liver, drug induced diabetes and several other hurdles, he is now survivor of a Bone Marrow Transplant with the cancer in remission!! Yeah! Praise the Lord!

Enter 2025 and my health…

I was slammed in early January with other family-type stresses and illnesses, causing me more heart palpitations with me learning (the hard way) how NOT to respond to stress. Then I had a bout of pneumonia in March that came out of nowhere and took weeks and weeks to get rid of. That lead to a stress test that made my body churn in pain for weeks from the Fibro, and, in late May, after more weeks of feeling worse and worse from that stress test, I called my PCP because the pain just felt worse than Fibro. 

More bloodwork was done including another ANA and all those wonderful “anti-this and anti-that” tests.

In the meantime, I had excruciating hip and lower back pain that kept rocking my pain tolerance levels and brought them to heights I could not handle anymore. I walked and moved very slow but had to keep moving so I didn’t lock up. I forced myself to do my daily stretches and stationary bike ride to keep my heart healthy. Every day was a challenge. 

Finally, in June, the blood test results trickled in and came back saying my ANA and Anti-dsDNA was positive again, like in 2016-2020, only with higher levels and all my symptoms seemed to scream a Lupus flare. What? I had written off Lupus!

Apparently, Lupus did not write off me. 

It appears that the original diagnosis was real, and I have learned that Lupus has periods of remissions and flares. I am apparently in a doozy of a flare with the attack hitting my joints, capitalizing on my hips, lower back, and knees.  The classic malar rash seems to come on with stress, heat and being outside. Add 3 UTi’s in the midst of all this and, well, you get the picture! (Yes, apparently UTi’s and Lupus go hand-in-hand. My doctor has strongly advised me to accept that I have Lupus and take it seriously. That’s going to be hard to process… however, my body will remind me every minute of the day).

Life doesn’t stop for Lupus. 

Because of my over-the-top pain levels and inability to walk comfortably without pain, my doctor asked me to try a nine-day course of steroids right away as a way to calm the flare and really see how the Lupus responds to the meds.

Well, the first day I did not feel any changes. The pain was still agonizing in my hips, and I felt like maybe I had set myself up with too much hope. However, I awoke the second day and felt like a whole new person!! It was so incredible to feel like I did over a decade ago!  I could walk without pain!! I went outside and pruned shrubs and just had the best hour I’d had in years! This wonderful, elated feeling also confirmed that I was indeed in a Lupus flare which had seemingly attacked my hips and lower back, as the pain in that area had calmed down. The third day I felt Fibromyalgia-y… which I knew was from the lovely hour I had spent outside the day before!!

And then… just like that… the days went by, and the steroid dose began to taper off, and the pain began to drip back in.

Each day of the dose-down, the pain has slowly spread and deepened, and I can feel it rearing its ugly head with a calm vengeance. I have 2 days left of steroids… at this rate, I know the pain will become my constant companion once more. The relief for a few days was great, though!

I must admit, the current view from where I sit is rather bleak. My Lupus symptoms seem to be returning even as I type… the pain, the malar rash, the pustule bumps on my scalp, which my doctor called folliculitis, which I have learned can be common with Lupus. The cause of mine, so I was told, “Could be from Lupus, could be from the steroids…”  leading me to believe he has no idea. Anyway, I used to get folliculitis periodically before, only this time it is all over my head. UGH! Fibromyalgia is bad enough; this is so much worse.

Again, life doesn’t stop for Lupus.

Life doesn’t stop for anything. 

The hope is that the steroids have halted this horrible Lupus flare and if it comes back, it will be more tolerable. 

Time will tell. 

My PCP is making me an appointment with a Rheumatologist at the end of the summer to discuss Lupus medication treatment options.  When I think back over the past decade, I can see when, what I thought was a bad Fibromyalgia flare, was actually a Lupus flare that I didn’t recognize as Lupus, because I was in denial.  I think today I believe in this diagnosis… tomorrow I may not… again… and then the next day I will have to come to terms with it… It is definitely a mind accepting thing; Too much to wrap one’s mind around… at least for now.

No wonder the motto is “Lupus Sucks.” 

So, from my “quite-possibly-still-in-denial” Lupus home to yours, STAY STRONG!!!!

WE CAN GET THROUGH THESE FLARES!! Kudos to all of you Lupus Warriors!

God Bless-

~The Fibro & Lupus Momma of Ten

Traveling when you are in pain is never easy. When you have a CPD, it makes it even more challenging. 

As a sufferer of Fibromyalgia and Lupus, I can tell you that driving is a drag-even if you aren’t the one driving. The seats are cumbersome, there is minimal leg room, getting into and out of the vehicle can make rest stops burdensome, and well, let’s be honest, driving is just not fun when you have a CPD.  If you suffer from SLE, making frequent stops are a must so the risk of developing blood clots stays low.  All these things need to be factored into your itinerary. 

I have just returned from a driving trip that took 10 hours to get there. It was decided that dividing the trip into 2 days would make it easier on my body. Thankfully, I was the passenger. 

Day one was 5-ish hours, with 2-3 rest stops along the way, each stop taking 5-10 minutes to stretch and walk a bit. Day two included miles and miles of twisty-windy roads with NOWHERE to stop and the intense nausea and stress from gripping the handle was real…you’ve never seen someone happier to finally arrive at their destination!! Of course, I could barely climb out of the vehicle with pains rising up in places I never knew could have pain. 

Thankfully, the destination had a jacuzzi tub, which my aching joints were delighted to see and the anticipation of being soothed in the warm, bubbly water was nicely delivered!

When you travel, there may be unexpected things like long highway waits due to accidents, road construction and detours. Other unexpected things may be stairs and steep walking areas, unavailable parking close to your stop, and so much more, so be sure to wear comfortable clothes and shoes and bring lots of water and snacks, just in case you get stuck in your car longer than expected. 

All of these suggestions are from this recent experience! 

In two weeks, I will be the driver, and the destination is 22+ hours one-way, not including rest stop walks and food breaks. I plan to drive 5-6 hours each day, stay at a hotel with a pool (to ease the joints from driving), and arrive with my body as calm as possible. Pacing myself will be the key with planning multiple stops to keep the joints lubricated. I plan to pack healthy snacks, lots of water, my heating pad, massage rollers, knee and elbow braces, Motrin and/or Aleve, and get plenty of sleep each night. This plan will mean a 7–8-hour day total, but at least I won’t be in the car that long and (should) arrive with minimal body-stress…

So, happy travels to you all! 

God Bless-

~The Fibro Momma of Ten

Recently my husband asked me how I was feeling. 

I responded with “That’s a loaded question because I don’t want to come across as always complaining.”

He smiled a knowing smile of “trying to understand.” 

Then said, “Maybe you could come up with a phrase that would tell me how you feel.  For example,  ‘I’m fine’ might mean you feel run over, broken or hurting. If you say ‘I’m okay’ it might mean ‘today isn’t as bad’ ” 

So, I have been pondering what he said in trying to figure out responses that are positive, but would also relay to him how I’m really feeling.

When you are in the middle of a pain flare, being positive is not the first thing that comes to mind. We have to practice that.

It’s not really lying about how you feel, it’s trying to be optimistic.

We battle ourselves each day. Our mind can suffer; being optimistic is a learned trait. 

It can be very difficult to be optimistic when your joints literally feel like they are dangling by a thread and it’s all you can do to sit down or pick up a cup of tea.

So, the next time he asks how I am doing, and I say “I’m fine,” he will know what that means…

Because God knows how we feel no matter what we say…or don’t say. We are all broken and in need of a savior. 

The beginning of the song and chorus, Truth Be Told by Matthew West speaks volumes…

Here are the beginning lyrics:

“Lie number one, you’re supposed to have it all together…And when they ask how you’re doing, just smile and tell ’em, “Never better”…

Lie number two, everybody’s life is perfect except yours….So keep your messes and your wounds and your secrets safe with you behind closed doors…

Truth be told, the truth is rarely told…I say, “I’m fine, yeah, I’m fine, oh, I’m fine, hey, I’m finе”

But I’m not, I’m broken.

And when it’s out of control, I say it’s under control…But it’s not ….and You know it

I don’t know why it’s so hard to admit it-Whеn being honest is the only way to fix it-There’s no failure, no fall, there’s no sin You don’t already know…So let the truth be told.”

Tell Jesus how you feel. Rant, rave, let it out so when your loved asks, and you say “I’m fine” they will know what you mean and the truth will be told.  

Blessings-

~The Fibro Momma of Ten

Chronic pain sufferers WILL to “do” must be strong each day.

When a person lives with a chronic pain condition they have to be STRONG, too.

They are their own cheerleader, their own motivator, their own boss.

These traits MUST be there for suffers to keep going. Some people possess these traits naturally and some people MUST practice to make them a part of their lives….and some people are exhausted from being cheery and positive when they feel like road kill. 

Mind-over-matter is the mind-set which sufferers MUST have, and that alone can be, well, utterly exhausting.

WILLING ourselves to get up, go to work, do the chores of the day, cook, clean, take care of others, all while trying to function, etc. is the daily norm…and WILLING ourselves is necessary because we HURT…all.day.long. 

When we hear people complain about how hard it was to get up today, and they are healthy, it can be infuriating because we know they CAN, they are just choosing not to.

We would LOVE to go back in time and be healthy again.

We may not be able to DO each day, but we DO it anyway, and we DO our best.

Pray for those fighting Lupus, Fibromyalgia, PsA , RA, and so many other Chronic Pain Disorders.

Silently applaud those that suffer; they are exhausted.

It is likely that getting up and going, doing the things, and trying hard to smile (when inside they may be fighting back tears, whether emotional or from pain) was the hardest part of their day.

The mental effort to get the body to do anything in a day IS rough. But once we get going, we MUST keep moving or our bodies will lock up. 

It is a vicious cycle. 

So here’s to you all who WILLED yourself up and going today!

May the Lord grant you peace and endurance. 

~ The Fibro-Lupus Butterfly

Today is Memorial Day. A time for reflection on those men and women that served The United States and died for our freedom. 

This day should not be taken lightly. Whether this day brings painful memories of loved-ones past, or just a silent gratitude of thankfulness, please take a moment of silence to thank God for those people and for the many mothers and fathers who gave up their children for a mighty cause and for the children who lost a parent or parents, brother or sister, grandparent, uncle or aunt so we could be free. Pray for those serving now, as well. They are our country’s future. 

Freedom is NOT FREE. Freedom has a cost. 

Today we may listen to a patriotic song or watch a patriotic war movie about those heroes.  May we never take for granted their sacrifice so we could be free. Listen or watch with open hearts. 

America is the Land of the Free and the Home of the Brave.

May God continue to Bless America!

My daughter sang a song she wrote with her brother many years ago about those that died for our country. She was 14. All our sons have served or our currently serving in the United States Military. We are very blessed by their service and dedication to our country; You can listen it to it here. 

~The Fibro Momma of Ten

Today I have been thinking about exercise. 

Anyone who has Fibromyalgia, Lupus or other chronic pain issues knows that exercising is never easy for anyone, let alone a person with chronic pain. 

Like many of you, I was once a very active human who bounced out of bed first thing, ready to tackle the events of the day. Now, I can barely peel back the covers and sit up. I have to will myself to do just about anything anymore and exercise is one of them. 

I will myself up in the morning by 6:30am, slowly brush my teeth and then, even slower, put on exercise garb, and elastic arch bands for my feet so I can walk and then hobble downstairs to an exercise room I created last summer. It is equipped with EVA foam flooring that I installed myself and an all-in-one exercise machine and a large exercise ball, which, after a horrible accident in 2024, where the one had been using split wide open while using it, I crashed down, breaking my coccyx in 2 places, I now only use while lying on the floor, haha-click here to see the brand I now use.

I also use free-weights and a bench.

Yes, please click on all of the links to see what I use. 

I have elastic bands for my arms and an Aridyne bike that my hubby got for me back in 2015 when I was first diagnosed with Fibromyalgia.  

I have an Amazon Music list of good Christian music that I play on shuffle and listen with my favorite ear buds. 

The music gives me a sort of worship session of encouragement while I stretch and make myself become useful, if only for a couple of hours. I exercise to keep myself as healthy as possible. Most days it is a mind-over-matter dealio. Well, okay…every day is mind-over-matter, haha. 

Some days I can manage a lot; some days I may have silent tears streaming down my face due to the pain. But most days, I manage by praying through it, knowing it is helping me even if it DOES NOT FEEL LIKE IT. 

I am a wife of over 35 years and a Momma of nine blessings on earth, two who still live at home, so I need to keep on keeping on! 

This is my prayer for you!!! 

First, you need to BEGIN. Start slow and build up. 

Slow and Steady Wins this Race. 

May God Bless You Today!

~The Fibro Momma of Ten

April showers bring May flowers, or so the saying goes. 

April showers can also bring the blues, especially if you are a Fibromyalgia, Lupus and Chronic Pain sufferer. 

Today it is storming and pouring rain, which does affect one’s mood. If you have Fibromyalgia, rain also affects your head, giving it a “hazy” sort of presence, not to mention how every joint will scream at you…all-day-long. It then becomes a mind-over-matter scenario, and “matter” usually wins. 

At a recent check-up with my PCP, it was decided that extensive blood work should be done again to check my status on **Lupus, making sure it is still in remission. The reason for this is that I have been recovering from a bout of pneumonia and since then, my heart has decided to start palpitating and/or racing again, causing an increase in my current beta-blocker. I was placed on 5 days of steroids and 2 different antibiotics for the pneumonia, which rocked my Fibro-body’s world, and I am still recovering from it all. My cardiologist has also ordered a stress test and echocardiogram as well, plus a chest x-ray to be sure the pneumonia has left. It’s my second lung sickness in seven months, so they want to be thorough and see what (may be) going on.  All this is to be done in the next month or so.

In the meantime, I need to continue to pace myself, breathe deeply and often throughout the day, so I can keep my lungs open, and also try to reduce all forms of stress and be mindful of how I handle stress. That shouldn’t be too hard …. (sarcastic smile of genuine enabling) …To help, I have listened and memorized Mercy Me’s song Exhale. It really helps me to have it “play” in my head when I need to breathe deeply or I feel overwhelmed in my day. It is a short and peaceful song to keep you grounded with Jesus.   

So, back to the April Showers…

Today it is storming, with a forecast of rain for the next 3 days. My body feels the atmospheric pressure, like it is beating down on me and me alone. Of course, that is not the case, but it feels like it.  My Dachshund doesn’t like storms and is buried under a blanket on the bed, slightly peeking out, watching me type. 

Storms wreak havoc on Fibromyalgia sufferers

As I type this, I have a heated, home-made, rice sock thrown over my shoulders to help ease the pain I am feeling. Only those who suffer with chronic pain (CP) would understand. 

A person just reading this who doesn’t suffer from CP would wonder why I am typing at all if I feel so poorly. The answer is …I HAVE TO KEEP MOVING, even if only a little bit, to keep my joints from locking up. Every 5 minutes I stand and stretch, walk a bit, and then type some more. 

Today, it may take me 2-3 hours to get this post written.

Again, I NEED to pace myself. 

Chronic Pain is a drag on every level. Our mental outlook is EVERYTHING, which is easier said (or typed) than done. 

So, here is to Mind-Over-Matter!!

May your day be dry, wherever you are, and your pain be minimized my self-pacing and minimal stress. 

God Bless-

The Fibro Momma of Ten

**There are many websites intertwining Lupus and Fibromyalgia with the heart and lungs. One for Lupus can be found by clicking here. One for Fibromyalgia, by clicking here. **

We have a Chronic Pain Disorder; Now let’s talk about whether the loved ones around us can understand what we deal with daily.

We try not to vocalize our pains or we sound like a hypochondriac.  We try not to over-do it, but then we look lazy. When we do things we shouldn’t, we are told to stop so we don’t over-do it, then we get frustrated because it won’t get done. We might ask for help, but then we appear helpless and like we are not trying.

It is a never-ending cycle of mental and emotional stress.

We might look at the chores around the house or yard and think “I could do that today…” then we do “that” and later we can scarcely move and we wake up feeling run over.

Things need done. Plain and simple.

We may exercise daily-walking outside, treadmill, Aridyne bike, etc.-keeping our bodies in the best shape possible, knowing it’ll hurt us later. We may drink the daily recommended amount of water, eat all the right fruits and veggies, make our proportions the correct sizes, not eat sugar-filled foods, etc.

But we Fibros know that it DOESN’T MATTER. We will still HURT.

So, what does all that have to do with whether or not loved ones understand what we deal with?

Truth is, they don’t and never can. I know that sounds menacing, but we are being real here, right? 

Everything described in the above paragraphs are our reality. Now, several factors may contribute to the attitudes of the loved ones, like the kind of day they are having, stresses in their lives, etc. I mean, being a caregiver is not as easy task. Many of us Fibros don’t necessarily need a caregiver, just a sympathetic party who tries to understand and isn’t harsh about it; someone who sees what needs to be done that you cannot do, and offers to do it, or better still, just does it.  But that can be a tall order for most people. 

We could lower our expectations, but then, we may find ourselves alone in our pain. That is a very hard place to be. 

Alone in our pain.

I know some of us need to work outside the home to make ends meet. Having Fibromyalgia, Lupus or other CPD, working outside of the home is rough on our bodies. Even one who is fortunate to work from home or is a full-time mom, the daily struggles and pains are REAL. 

In my world, speaking about my pain and struggles may elicit unwanted advice that wouldn’t be helpful at all, or worse, elicit an argument about it, causing more pain. Some days it’s just better for me to fake the smile and push through to avoid unpleasant conversations that stimulate the pain response. 

What if those around you are dealing with something that you mentally and physically cannot help them with, but they need our help? Well, we put on that smile so we don’t look like a pained zombie and do our best to help them through whatever-it-is, all the while wishing someone would see through our smile to our hurting body and offer us the same compassion that we are expected to give. 

Our mental state is often hanging in the balance between never-ending pain and trying to act normal. Daily pain is not normal-unless you have Fibromyalgia, Lupus, PSA, etc. 

And unless they suffer from those afflictions, they won’t understand. This is where our hearts and minds need to look elsewhere. 

We need not look to man for our help; We must look to Jesus. 

Psalm 121:2 says “My help cometh from the Lord, which made heaven and earth.”

We must continually lean on God for our strength. 

“For I the LORD thy God will hold thy right hand, saying unto thee, Fear not; I will help thee.”-Isaiah 41:1

“Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.” -Philippians 4:6

“The LORD is my rock, and my fortress, and my deliverer; my God, my strength, in whom I will trust; my buckler, and the horn of my salvation, and my high tower.” -Psalm 18:2

Loved ones cannot possibly understand the magnitude of our pain, but Jesus does. 

Call out to Jesus and ask Him to give you the endurance to persevere and conquer each day and all the hurdles set before you. If He chooses to release you from your pain-Praise God!! But what I do know is He promises to be there for us while we are in the midst of our pain in ways that no human can be. 

Let us remember to lean on Jesus when we get frustrated about our loved one’s lack of understanding. 

So, when loved ones continually let you down, seek Jesus. He understands and will help you. Read your Bible. Pray to the God Who Listens.

What a typical day looks like for a Fibromyalgia sufferer…

*6am- wakes up stiff with joints feeling like they are on fire… every.single.joint.

*Struggles with brushing teeth and showering, head may have that “far-off” hazy feeling of a pending “Fibro-type” migraine- (only a fellow Fibro sufferer knows what that means).

*The left shoulder may be throbbing, and the brain is trying to recall what could have possibly been done in the days preceding to cause the pain and a heating pad is used to find relief. (Fibro sufferers know the pain runs 24-48 later).

*8am- breakfast is eaten and the long to-do list that was written down when the brain was working (fibro-fog) can’t be located.

*9am- list is found, the pain is now in both feet which hurt with each step taken.

*10am- the pain running down both arms and shoulders from paying bills has caused a lull in that task. Getting up and walking a bit helps and it’s noticed the feet seem to feel less painful, now.

*11am- while trying to remember where the bill paying was left off, the mind goes blank and a rest seems likely. The hazy head feeling seems to be getting worse.

*By noon the shoulder is doing better and suddenly the right knee is not cooperating due to going upstairs for something and going back down is a challenge. Once down, the knee brace is used for the rest of the day.

*2pm- the knee isn’t as bad; however, the far-off migraine jumps from the shelf and lands full-force making every joint scream with the burning pain as the migraine engulfs the entire body. The Ibuprofen that should have been taken when the hazy feeling began is taken now. A cloth over the eyes and a nap to “sleep-it-off” becomes the order of the day…(and, if available, a neck rub by a loved one to help ease the pain that makes you want to curl up and cry). If no one is available, one’s own hand can rub the neck, but the fingers will throb with each motion making the pain even more so.

*3pm- sleeping helped the migraine climb back on the shelf, only threatening to invade again if anything is done to knock it off again.

*4pm- finds slow movements and a pacing to get through the evening hours is needed-all at a pace a snail could win.

Dinner needs made, kiddos to care for, etc. and all the poor sufferers can do is muddle through and do their best…all while smiling through the pain and overwhelming feeling of being overwhelmed. Not to mention trying not to show how the Fibro-fog has set in for the third time that day and the never-ending question of “what is for dinner” becomes another reality.

*6pm- finds the above is done, hopes for help with the cleanup, which seems daunting as the pain is now from neck to waist running down the spine causing a twinge of electric-like pain to jolt the head, hips and ankles, reminiscent of Steve Martin in “The Jerk.”

*7pm- brings a crash and burn that overtakes the entire body and the need to be horizontal is eminent, disappointing those around you who wanted to hang out and have some fun. Polite apologies are made…a shower is considered, but even the thought of the effort that would take is daunting, so it’s skipped.

*8pm- sleep hasn’t come.

*9pm- your body finally falls asleep but awakes again- off and on- as each sleepy turn of the body produces pains that eventually wakes it up again…this continues all night.

*6am- the light awakens the groggy human, and it begins all over again…only this day the troublemakers may be a hip, ankle or the hands where the dexterity is lacking to such a degree that two hands are needed to pour the coffee into the mug…you do the “happy-dance” when nothing spills, only to stop mid dance to the stinging pain that shoots through the entire body from the excited thrill dance, which sets the tone for the rest of the day. Coffee is grabbed and a chair is where most of the morning will be spent…

Good morning to Fibromyalgia, where mind-over-matter AND the most positive of attitudes are the ingredients needed to get through one’s day…

Life goes on. Things need done. Help isn’t always there, and if it were, and we asked for it, we’d sound like a complaining hypochondriac…every.single.day. So…we don’t ask. We keep plugging along with a smiling face doing the best we can, (likely overdoing it) and paying for our choices hours or days later.

Our theme song is “Tears of a Clown”-

It’s a vicious cycle.

May we lean of God each and every day for the strength to continue and be thankful for each little triumph, no matter how small and make the smiles as real as possible.

Are you perimenopausal? Do you suffer from Fibromyalgia, Lupus or another arthritic condition? 

If so, you may have noticed your pain levels have increased during your cycle. Perhaps you have more severe migraines, more intense pain, etc. 

People with Fibromyalgia get a different type of migraine than the usual kind. These migraines don’t just affect the head; they are whole-body-encompassing, including all the joints and ligaments. Literally any moving body part hurts, along with the fuzzy, hazy headache that begins slowly, creeping over the body and consumes you.

If you suffer from these debilitating migraines, you know exactly what I mean!

Any stage of menopause can ascorbates these types of migraines, making them more intense and cycle-dependable. Meaning, you know you’ll get one when your cycle hits. 

I have logged my cycles and symptoms for over a year. What I have learned about my body is the predictability of these symptoms to be true. Now, when my cycle begins is not as predictable!  I am perimenopausal so I may start at 23 days or as long as 36 days. However, what is predictable are the symptoms once the cycle begins. 

I am not usually a medication taker…but, when I feel that migraine “sitting” on the shelf in my head, I have learned that 600mg of Ibuprofen will help ward it off, if I catch if soon enough! Once I take the meds, I can literally feel the battle of the pain fighting with the Ibuprofen and that pain is worse than anything!

I have to sleep it off.

The pain is way too intense-even for this high-pain-tolerance personality! A quiet room, a warm cloth over my eyes, or a helpful back or neck rub, will all help to ease the pain.

Knowing this about Fibromyalgia can help you with planning out your weeks. 

I have found keeping a low-key schedule the week my cycle is due is best. Is this always possible? NO!! Life sure seems to get in the way!! But, I do try to have some control over these times of the month by not planning doctor appointments, outings and family-get togethers. It really makes a difference, if you can!

So, try keeping a log of your symptoms! You’ll be surprised at how much you can manage your pain!

God Bless you in your pain journey!

Ringing in the ear affects many people who suffer from Fibromyalgia.

The ringing usually affects one ear and make that ear feel full or heavy. The ringing may be intermittent or constant. It may occur a few times a month or several times a week. It may even precede a Fibro flare!!

For the past year or so I have had this issue and recently, the ringing in my ear was so bad that it was almost deafening (pun) and lasted about a week. I awoke in the night with the ringing so loud it was hard to fall back asleep.

Today, the ringing seems to be much less and for that I am thankful!

I have learned how to muddle through when the ringing is there. I cannot hear as well when that is happening and I have to ask my family to repeat things often. By muddle through, I mean that I would play soft classical music or instrumental hymns to help overshadow the ringing sound. I would bury myself in work to keep my mind off the ringing sound and learn how to improvise when I’m being spoken to. Some days were better than others.

I have crossed referenced ‘ringing in the ear with Fibromyalgia’ and was surprised to discover (well, not really surprised…Fibromyalgia already has a long list of ailments…)that this is indeed another symptom to add to my ever-growing list of Fibro complaints!

So, if this is you, know you are not alone!

As I stated earlier, today has been better for me. Three days ago, I was almost bouncing off the walls with the ringing!

As every Fibro sufferer knows…we may wake up today feeling pretty good and wake up tomorrow feeling run over and left for dead. What pain we experience today will be somewhere different tomorrow. What pain we wake with in the morning will be replaced by something new in the afternoon…and what things we do today will totally affect our tomorrow.

My prayer is that the ringing will not cause extensive hearing loss so I can forever hear the Bible read out loud, hear my children call to chat, hear my grandchildren play outside and hear my husband tell me he loves me.

Blessings to you and yours-

The Fibro-Lupus Butterfly

This website has been sorely neglected for a host of reasons…and I apologize for that.

The sabbatical I had to take was mostly in part to my husband, who was diagnosed with blood cancer and underwent a bone marrow transplant in the fall of 2021.  

Having to deal with my Fibromyalgia and the constant trips to the hospital, overnight stays, cafeteria meals, stress of the transplant, emotions of my family…emotions of myself…attention to my husband, dealing with the nurses, doctors and staff, late nights, early morning, lack of sleep, etc. etc, etc. all wrought havoc on my body. during those many months. 

I brought Alieve for nighttime, Ibuprofen for immediate day time use, tried to make healthy eating choices, drank a ton of water, used breathing technics for stress and prayed a lot!

Did I have flares? Yes. 

Did I have times where I could barely walk? Yes.

Did I struggle with the ups and downs of chair sitting? Yes.

Did I have a lot of stressful times? Yes.

But through it all, I managed daily living because my focus was on my husband and not on me. 

When my sweet Marine Corp Reserve son stopped in to see me after a drill weekend, he blessed me with a much-needed back massage. That was heavenly!! I cannot describe the blessing it was!! 

My husband has had many bumps in the recovery road with Graft vs. Host Disease (GvHD) and multiple hiccups with health issues here and there. We are managing daily and life continues to move forward. We are thankful the transplant was a success and that the GvHD is being managed. 

Today I am drawing a line and plan to step forward and not look backward; only look to the future!

That said, I continue to manage my Fibro as best as I can. I will be making future posts about this. Also, please like my page on FB! 

Have a blessed day!