Mom and me at Kansas City International Airport

Last week Mom and I had to take an unexpected trip to Kansas. My aunt was in the hospital, in ICU. Mom and I were worried, so we trekked on out there.

I’m the arthritis lady that has to take a special trip to the doctor’s office so I can make it through an airplane and car trip. I have to schedule walks down the airplane aisle to keep my legs from going crippled.

Good news: My aunt DID get moved out of ICU, and we got to visit with her. Even in hard times, Aunt Linda’s sharp wit can save a dire situation. She’s funny when she tries to be. She’s even funny when she’s not trying to be. I hope I have that much grace when I’m in a situation like that.

Bad news: She has a long recovery ahead and will be in the hospital for a while yet, and she’s only in her 50s. Hospital stays are miserable.

Other good news: I got to see my cousin Amber, who I grew up playing with, so this was a big deal.

Mom, me, and Amber, taking a lunch break at Panera.

Other bad news: Amber’s back is maybe even more messed up than mine is. We have this family arthritis problem. We could have done without that part of the inheritance, Granny…

So Amber and I were both popping NSAIDs and muscle relaxers and spraying each other with BioFreeze. And by the way, we are still young. We are trying not to think about how much worse this could get!

Nothing was working too well. In fact, as annoying as it is, do you know what seems to help me the most??

Physical therapy exercises. I started them in 2010 when my chiropractor assigned me strengthening and stretching exercises, and I was hurting so much that I actually did them out of pure desperation.

I did them faithfully until I started feeling better. Ever since, I’ve had the hardest time getting back in the habit. I need my own personal physical therapist in my living room.

So I found this YouTube channel that is PERFECT. Actually, it’s more than a YouTube channel. It’s a whole website. I wrote all about it over at Monterey Premier. Check it out here.

“In this world you will have trouble. But take heart! I have overcome the world.”   –Jesus, in John 16:33

The post Top Back Pain Tip from the Arthritis Lady appeared first on Stories of Our Boys.

Well, if you have it, then you know, and if you don’t, I’m sure you have your own problems. Ha! No, I just mean that I found this video that explains well what we are doing for my hip pain. (I do live in fear of sitting. Sitting hurts.)

I still have to do one more MRI to check for inflammation in my SI joint, but for now, we’re going with the theory that all of my problems are mechanical.

Meanwhile, my physical therapist and my chiropractors have told me that my pelvis has a lateral tilt. My PT says that the left side is usually “way higher” than my right. He even taught me how to even it back out, so just in case any of you share this problem, which they say is common, I wanted to share this video with you all.

Perhaps if I do this everyday, I could stomp out this pain in my rear altogether:

This makes a lot of sense. I’ll try anything to be able to take a car trip!

I’ve been going to so many doctor appointments, tests, etc., etc. Getting actual answers keeps getting postponed, though.

Last night, I was standing in the kitchen, and BAM! It felt like my right shoulder was on fire. It was intense. Then today I couldn’t turn my neck to the right. Then the same thing happened to my husband, but on his opposite shoulder! Weird! I hardly slept last night. It hurt all night long. Alan slept well, but his shoulder still bothered him during the day today too. We are a pitiful bunch.

I’ve had tons of x-rays at this point, though, and I can tell you that they are clean. I have beautiful, happy bones. My rheumatologist says that I do not have an autoimmune disorder, which is good. Although, actually, psoriasis is an autoimmune disorder in and of itself, but I guess he didn’t think that one counts.

Yesterday, I was feeling down about the whole, “What in the world is wrong with me??  I’ll never get to take my kids to Disneyland,” thing.

This morning I drove all the way to my cardiologist appointment, only to find that the doctor was at the hospital. I rescheduled with his physician’s assistant. I liked her anyway, so no heart test results for me until next month.

I used my surprise free time to drive to the beach and think and pray and watch people try to surf on tiny waves.

I have so much to be thankful for! My friends have been so insanely supportive. McKenzie baked me gluten-free bread. Joy bought me the most delicious loaves from Costco. Cassie has been so encouraging. Hillary brought us dinner. Alan’s friends brought us a bread maker to borrow. My Classical Conversations mom friends have prayed over me. I feel so loved!!

Do you know what I was reminded to do today? Have fun! When did I stop doing things just for fun? I’ve decided I need more happy in my life. Our nanny, Analise, always opens all our blinds and curtains. I was amazed at the difference in mood that it creates!

Here are a few simple ways to create happiness:

-opening windows, or just the blinds and curtains

-listening to music

-taking walks, even better, taking walks with friends

-taking the boys to the park

-buying and reading a magazine that you love (I chose Glamour. Next up: Vogue!)

-talking to a good friend or your mom on the phone

-doing something fun with the kids

So I took the boys swimming today. I couldn’t swim with my spontaneous shoulder injury, but it was still rewarding. I got in with them.

I think it’s time to stop worrying about what is wrong with me and just get back to doing my job, but with more music and more happiness. I’m not promising anything about the messy house, though. That’s a side effect of the homeschooling. We’ll be tidier once that’s over.

The post The Fear of Sitting Down and Little Tricks for Bringing Happy Back appeared first on Stories of Our Boys.

Ah youth. Where did you go, youth??

My Battle with Chronic Pain Part III: The Pain Returns

It reminds me of that song: “The cat came back the very next day; it just couldn’t stay away.”

Life was going well, and I was on cloud NINE, being finished with my very first year of home schooling! Wahoo! Summer! I made big plans.

But why wouldn’t I? I was young and healthy. I should be able to handle a cross-country flight and a few short road trips. Right? And don’t give me the, “You just need to be more active,” talk because I was being active. The problem was all the sitting and riding!

It started with the plane, it worsened with each car trip, and I took several.

When I first arrived in Florida, Alan called me from home, “I made you a doctor’s appointment.”

“Why?” I asked. I hate doctor’s appointments, and I had been doing so well.

“For your back!”

“My back is better. I’m good, Alan, I don’t need a doctor.”

“Ehhh, I think you do. Let’s keep the appointment, and you’ll probably be glad you have it by the time you get home.”

Heh? Did my husband just do a little soothsaying? Was he saying that he knew I’d be back to hurting by the time I got home?

I shrugged it off. I enjoyed my vacation. He joined us. We took even more car trips in the South.

fun in the sun

And Alan was right. I was happy to go to the doctor by the time I got home. What is it with airplane and car rides??? I don’t think this is normal.

The doc was a super friendly chap. He offered me a shot for my shoulders to loosen them up. I declined. I’ll never forget seeing my mom get a shot for a similar shoulder problem. It hurt much worse before it felt better. No thanks. My shoulders are more stiff than they are painful, so I’m not that desperate yet.

The Physical Therapy Phase

He sent me to physical therapy for my hip.

I tend to lean towards my left when I sit to keep the pressure off my bad hip. That hip hurts bad when it flares up.

“Why are you sitting like that?” the physical therapist, Ryan, asked me.

I’m so dumb. I went straight into defensive mode instead of patient-being-helped-by-a-doctor mode.

“What? Like how?” I asked trying to straighten my posture.

“All cocked to one side.”
“I don’t know.” Yes, yes I do know. Why didn’t I just admit my hip hurt? That’s what I was there for, geesh.

Doctors are always asking me questions that are probably super obvious, but I haven’t thought about it. So two days later, bam! I always figure out the answer to their questions. And that is why I am so thankful for physical therapy.

Yes, they made me do stretches, exercises, taught me how to squat properly, etc., etc. But the biggest thing was that I finally began to learn what I had begun to truly want to know:  What is wrong with me????

Ryan would work on an area, and I noticed that he knew the exact name for every single thing he worked on.

“That hurts bad. What is that?” I’d ask him.

“That’s a muscle.”

“What muscle is it?”
“That’s your tensor fasciae latae muscle. It’s a compensatory muscle.”

I learned that the tensor fasciae latae, and several other muscles become inflamed when the more essential core muscles are weak, but I also learned that those muscles tighten down when they are protecting something that’s injured underneath.

“Yow! What is that?” I have more angry muscles, tendons, and bursa than I had ever realized.

“That’s your iliotibial band. You’d be better off if I don’t work on that. You need to roll it at home with a rolling pin.”

He was right. He did work on it right before Christmas break, and every where he touched it there were little bitty bruises for a couple of weeks.

Physical therapy was fantastic. My favorite part, besides just being so happy to get out of my house, was the ice therapy at the end. They laid ice over my achy shoulder muscles and that evil iliotibial band, which is a tendon that runs down the right side of the thigh.

I was able to learn so much from my physical therapist because he was actually able to see me enough times to know the real deal about what was going on. The doctors, on the other hand, only have that one visit to go off, in which I answer all their questions wrong but realize what I should have said days later.

And then I finally had a lumbar MRI and a shoulder MRI. The verdict was in: not a single thing wrong with my spine. Ryan was right.

And the shoulder: tendonitis and torn muscles.

I asked to see a rheumatologist. I did this because I had done some research and came across a disease that sounded so much like me. Yep. I’m guilty. Self-diagnosis.

Enter the Rheumatology Phase

Now you want to talk about life-changing self-evaluation questions. My rheumatologist asks questions that I simply go blank on.

“How long does it hurt in the morning?”

Ummmm I never thought about it that way. Some days it does not ever go away. Some days I don’t hurt at all..

So I said, “I don’t know. Once I get going, I’m okay.”

I hated not knowing, and why have I never noticed? Then he asked me which is worse, morning or night?

I have no idea!

So I’m making a chart. It’s enlightening. Every day really is different.

So let me tell you what I think I might have (but of course I’m not a rheumatologist):

Psoriatic Arthritis: This disease is hallmarked by joint inflammation, which I have yet to be able to prove, except for tendonitis. Tendonitis is also part of PsA, though. So is nail psoriasis. You can read more about it here. (rheumatology.org link)

Was I right? We still aren’t sure, but we’re working on figuring it out. I could be dead wrong.

In fact, I had a rheumatology appointment this week. I do like my rheumatologist. He wasn’t convinced of the PsA. My blood work did not help me any, as it was free of any inflammatory markers. The day they did the blood work I felt pretty good. But he has ordered a hip MRI.

What is the deal with all the torn muscles, tendonitis, and bursitis (in both hips) if it isn’t psoriatic arthritis? That IT band syndrome that I have in my legs is called “runner’s knee”. Only I’m not running anymore, haven’t run since JD was born.

Over Christmas, I figured I’d get rid of all of this. I would just rest.

“Rest will fix it all,” I assured my parents, as I spent the entire vacation, practically, laying in bed. I literally could not sit down. The pain was even radiating into my pelvis bone, when I was lying in bed.

I love this photo by Janet. I literally woke up, rolled off my ice packs, posed for this picture, and went back to my ice packs.

My internet research assured me that rest is the way to fix tendonitis or bursitis.

Of course, that didn’t work. I finally went to urgent care and got a steroid shot.

The nurse practitioner assured me, “This will help, temporarily, but if you’ve had bursitis for three years, a steroid shot is not going to take care of it.”

It did help enough to get me through that plane ride, but returning to a wet California did not help. By Wednesday, I developed a terrible limp. It was so hard to walk.

And guess what, by Friday I could walk completely fine again. In fact, on Thursday and Friday, the sun came out and I felt down right wonderful. I was so excited.

Maybe this flare up is coming to an end, and I am excited about that, but I’m desperate to get to the bottom of it. Now the whole family is telling me I can’t go on the cross country road trip in the spring because I never know whether I will wake up completely incapacitated or not.

I have a doc appointment on Monday. We’re going to address my anxiety level, my heart,  and the renewal of my physical therapy referral.

This is getting personal. Rest didn’t work. Maybe exercise and nutrition will. It’s time to put this Humpty Dumpty back together again, and I mean business.

I do want you to know that while I was stressing out about this earlier this week, I am doing much better both physically and emotionally now. Even if I never find out “what’s wrong.” it will be okay.

“He, whose heart is kind beyond all measure,
Gives unto each day what He deems best,
Lovingly its part of pain and pleasure,
Mingling toil with peace and rest.”   (from the Hymn Day By Day, my favorite hymn)

I hope you all have a wonderful weekend!

In case you missed it:

Part I: My Battle with Chronic Pain

PartII: My Battle with Chronic Pain

The post My Chronic Pain Battle Part III: The Cat Came Back the Very Next Day appeared first on Stories of Our Boys.