word nerds unite.

It’s no secret that I am a total word nerd – most writers are – and I often recommend books I’ve recently read on my Instagram and Facebook pages.

I’ve also been thinking, as many of my posts here have been super heavy lately, that it would be awesome to make Saturdays Word Nerd Day at the Autoimmune Hippie. So, what exactly will that look like? Well, I’m thinking some weeks we’ll have suggestions of classic books and some weeks we’ll go with bestsellers and each week I’ll pick a theme and run with it. Maybe some gift suggestion themes around Christmas and that sort of thing? I think it will be fun – and it will lighten up the blog when it is really heavy.

I love encouraging my people to read!

This week, since I have indeed been having a beast of a time, I’m going to share some books that really encourage me and help me with difficult times:

Choose Joy by Sara Frankl.

Sara lived with an autoimmune disease, ankylosing spondylitis, that caused her great pain and debility. The last several years of her life were spent unable to leave her apartment. Still, she had great faith and blogged frequently and encouraged others with incredible joy, until her death at age 38. After she passed away, a friend collected her writings and shared them in this book and it has been a great help to me during my times of illness and struggle. Whether you are healthy or sick, I strongly encourage you to read this one.

https://www.thriftbooks.com/w/choose-joy-finding-hope-and-purpose-when-life-hurts_sara-frankl_mary–carver/9892646/#isbn=1455562815&idiq=18910098

The Ragamuffin Gospel : Good News for the Bedraggled, Beat-Up, and Burnt Out by Brennan Manning.

This has been one of my favorite books since I was about 15 and I can’t even explain how special it is to me. I’ll just say that Rich Mullins, who is forever dear to me, loved it so much that he named his band The Ragamuffin Band. It’s one of those books that changes your perspective on everything. I still have my original copy with highlights and underlines and stains and pages falling out. Read it. You’ll be so glad you did.

https://www.thriftbooks.com/w/the-ragamuffin-gospel-good-news-for-the-bedraggled-beat-up-and-burnt-out_brennan-manning/245728/#isbn=1590525027&idiq=4252185

When Breath Becomes Air by Paul Kalanthi

This book just came to me recently and I read it in one day. Paul wrote it while he was living with, and dying of, Stage Four Lung Cancer in his mid-thirties. It is such a moving book and I will be gifting several copies this year. It’s a heavy topic, but he still manages to be hopeful. It’s really beautiful.

https://www.thriftbooks.com/w/when-breath-becomes-air_paul-kalanithi/9495334/#isbn=081298840X&idiq=12229481

Brave Enough by Cheryl Strayed

I love Cheryl Strayed and this collection of her quotes is just what the doctor ordered. It is wonderful to sit down and read and also a beautiful gift. I suggest this one for everyone.

https://www.thriftbooks.com/w/brave-enough_cheryl-strayed/9630939/#isbn=1101946903&idiq=11479430

And, for today’s last suggestion:

Be The Gift by Ann Voskamp

All of Ann Voskamp’s books are good and necessary in my mind, but, in choosing just one to suggest, this book is visually beautiful with Ann’s photography and also filled with lovely, short passages of her amazing writing. It is an easy, comforting read on rough days and so soothing.

https://www.thriftbooks.com/w/be-the-gift_ann-voskamp/13866454/#isbn=0310089387&idiq=25609643

 

I hope you’ll find some suggestions here that are helpful – and all of the links are on Thriftbooks and super inexpensive!

Be well, everybody. Happy Saturday and Happy Reading.

Grace and Blessings.

 

 

a fractured hip – and some new plans

Last night, I found myself in the ER again with this right hip pain that just would not stop. As it should be noted, as I told the ER doc, I am not a weenie. I walk around on two feet with multiple broken bones EVERY DAY, in addition to some really uncooperative RA. When I say something is unusually painful, I mean something is really really wrong.

Well, as it happens, I was correct.

My right hip has also stress fractured.

I’ll know more for sure on Monday, but, barring any complications, the usual course of treatment is rest for healing.

Yes, a freaking broken hip. It has taken awhile today to really process this one.

My body has truly broken down with the long term steroid therapy. While my life expectancy can still be reasonably normal, steps have to be taken to heal these bones that can (the hip), my feet will likely never heal, and I will always have to exercise an abundance of caution with myself to avoid accidents as my bones are just brittle and I also have balance issues related to my RA.

But that’s all down the road. . . For now. . .

I am a woman in the bed for about 95% of my life for quite some time right now.

I am incredibly blessed to have my amazing husband who looks after me, even bringing the wheelchair (that my bestie so thoughtfully brought over several months ago) upstairs to help me, making dinner after he’s worked all day, and keeping our doggies stocked with homemade dog treats.

And our daughter travels with me to doctors appointments and grocery stores and helps me all day with any needs that arise.

And, of course, the Wonderpup. . .

Still, this chronic illness life is no joke and the scariest part of this diagnosis is that it is a sentence: this intense hip pain is going to be with me for quite some time.

I came across this link on The Mighty and the author did a pretty good job of covering some of the ups and downs of the chronic illness and pain life:

https://themighty.com/2016/12/realities-of-living-with-chronic-illness-and-pain/?utm_source=share-bar&utm_medium=pinterest&utm_campaign=sumome_share

And now, though I wasn’t improving anyway, this indicates a huge setback.

A freaking hip fracture. At 39.

Also, the teeny tiny part of my brain that really really hoped I might get better and go back to work one day just really had to let go. And disability is still so so slow. And I can’t walk through the grocery store or get through the day without two naps, much less be a nurse anymore. #fixitjesus

Totally letting go of being a nurse is letting go of a big part of my identity as well and this one hurts.

Still, though I am feeling pretty overwhelmed, I’ll keep on as always. I have faith.

As my family has been sleeping tonight – and I’m wide awake, due to pain, upset, and more dreaded steroid shots from the ER – I’ve been working on some things and watching some TED talks and I came across this really great one:

Ladies, if you don’t watch the whole thing, skip to around minute 12 and watch the fabulous Jill Scott. It’s about a one minute long video and to hear her talk about our queenness is worth the price of admission.

As I’m feeling a bit out of sorts, I really needed Miss Scott’s wisdom tonight. I needed to remember that my ultimate dream when I was a little girl was to be a writer and that my pieces are starting to be published and I have two books that I am slowly but surely working on and that I can still do those things and this blog – that I love – whilst my hip is healing.

I am still me, even if my bones are pretty unruly.

Be well, everybody. Happy Friday.

Grace and Blessings!

the week devoted to my wheelchair.

It’s been a spoonie sort of week, with several chronic illness issues on my mind, both of others and my own.

And helping bring awareness to spoonie issues is my heart.

Sunday night, I stayed up and watched Jennifer Brea’s documentary, Unrest, as I mentioned planning to in my previous post. If you haven’t seen it, it is available on Netflix streaming and I strongly encourage everyone to watch it, though it is difficult to sit through.

She suffers terribly with ME, more commonly known as Chronic Fatigue Syndrome, and some of her fellow sufferers have even more severe symptoms than she does. While I knew ME was devastating, I did not realize just how debilitating it can be, with some sufferers even unable to speak for years at a time.

As always, we can’t begin to help what we don’t understand, so please do watch this one, even though it hurts.

Another spoonie who is very much on my mind is my precious friend, Angela, who has been battling epilepsy fiercely for many years. I knew she had a beast of a seizure last week and over the weekend I read her latest blog post:

https://wordpress.com/read/blogs/145463196/posts/436

It just breaks my heart for her as well and I would ask for lots of prayers and good vibes and warm fuzzies for her as she is recovering.

I only wish there were more I could do to help her.

And I’ve been trying to do some sorting of my recent spoonie issues as well.

I’ve tracked down the assistive device I need:

https://www.thegeocruiser.com/

Coming to terms with this part of things has been tougher than it sounds.

If you look at the link, this is an electric wheelchair that is collapsible to fit in a car trunk. I honestly had no expectation that I would need a wheelchair at this point in my life – but, between the constant breaks in my feet, my rapidly worsening right hip, and spinal issues, making the decision to use one will allow me to “have my life back” in some ways. I have realized that, particularly with this type of chair, I will be able to again do activities I find myself avoiding now because I don’t have the ability to stand or walk for them.

I am finding that, not only do I experience new breaks in my feet randomly just from standing, but my hip and spine situation seem to be decompensating so rapidly that I can tell a difference from week to week at times.

In addition to enjoyable activities that I would like to resume, so many regular activities people take for granted – like shopping at stores that aren’t yet accessible – will be possible for me again with a collapsible chair. It’s just time.

I’m working with the company to deal with insurance stuff if possible and have an appointment with ortho specifically for that purpose in the hopes he can help me. Let us all cross fingers and toes.

In addition to going to a chair for activities that require significant walking, I have also had to look at some other things that might help my situation and made a separate wish list for them to get them as I can.

Honestly, this all feels a little surreal, like I need to pinch myself.

I am certainly grateful that this exists and that hope is on the horizon that I can begin going to do the things I haven’t been able to do since I became so ill.

One recent event that REALLY upset me was when I was in Nashville visiting my bestie, Ginny. We parked about four blocks from the restaurant we were having lunch at and it just KILLED me to walk there and back. I felt like I couldn’t get my breath I was in so much pain – and, of course, I didn’t want to distress my bestie if I could help it.

Once we got back to her car, we realized that we were right by the art installation that we had come to see and take pictures with – but I just could not bear to park and walk anymore. So we skipped it. And I am so so tired of having to always just give up.

And that was a fun activity. What’s worse is that the same is true of “required” activities, like doctors appointments and grocery shopping and all of the things that healthy people are just able to go and do

So it will be a great blessing to get this aid.

But it’s still very strange to be working really really hard to get your wheelchair at 39. It’s a lot to take in.

By the way, if I can get it all worked out, he is already named:

Yes, he shall be called Maximus. =D

And all of the prayers and good vibes and warm fuzzies are appreciated as I’m sorting all of this out – as it’s stressful and confusing and enough to make anyone want to stand on their head.

Be well, everybody. Happy late Tuesday/early Wednesday!

Grace and Blessings.

 

more breaks – and acceptance.

Throughout this week, my body has been pulling a good sick again. My heart rate has been crazy high and so has my blood sugar at times. I’ve been weak and exhausted and frequently sleeping. I’ve been unable to stand for any length of time. My pains have had pains. It’s really been no bueno.

I was at urgent care early this week. (AND I’ve broken a tooth. #fixitjesus)

Since these episodes seem to be happening really often – and each one seems just a little worse than the last – and I have built-in mobility issues due to perma-broken feet and degenerative hips, I have been feeling profoundly. . . disabled.

Intellectually, I knew that was truth anyway, of course, but the gravity of my situation has really come crashing down around me rather suddenly.

And, two days ago, after I had just told my husband that I was going to have to start using one of my assistive devices – meaning either my cane-with-chair or my rollator – all of the time when I’m out, I watched this TED talk:

Jennifer’s talk spoke to me on several levels, though her diagnosis is different from mine, and I actually tracked down her documentary intending to watch it in the next few days (not knowing that I would soon be in bed with plenty of time on my hands – more on that in a minute). What undid me though, as crazy as it will sound to a healthy person, was the realization, upon looking at her assistive device, that it is exactly the type of device that I need. As the understanding washed over me, that, with my feet and my hips and my fatigue, I need something to ride on PERMANENTLY to be able to get out and about like I want to, I came undone for a bit. That was two days ago.

Then, yesterday, with a sick child at home (a long story as well), I literally just stood up and my prednisone-weakened right foot again said “no,” and I felt a major CRACK, followed by severe pain and tenderness. Some x-rays later and here I was:

Yes, I have another broken bone.

What’s worse, something is also very wrong with my right hip as well. . .

I have now realized that, prior to this week, I was still in some degree of denial, in that I was still holding out for a turn around that is simply not to be in terms of my mobility and pain. Now, I am prepared to begin working toward getting the long-term mobility aid I actually need, knowing that it will make my life better as I will be able to go and do and see the things I need and want to with much less pain.

Accepting this, my quality of life will greatly improve, as my pain is terrible, with trying to ambulate on broken feet and hips that are quickly giving way.

And, for now, its books and rest and Netflix and waiting to see ortho again. . .

And forward. Always forward.

Be well, everybody.

Grace and Blessings.

swimming toward the light.

I wrote about my disease issues in detail last week, ending with my diabetes diagnosis. At that point, I had been loaded up with steroids for my RA flare – after two ER visits – and was going to take our girls to our planned outing on Sunday – which I did. I also assumed I would be posting here and on my health coaching practice blog on Monday.

But, instead? All week . . . radio silence.

Where my RA has made me incredibly ill before, this week it just totally Laid. Me. Out.

I was in total misery, no matter what I did.

I honestly couldn’t seem to get the pain under control well enough to write a post or read a book or get my thoughts together half of the time.

When I was “lucky,” I was sleeping for incredibly long stretches due to exhaustion (and that’s only lucky as it was a respite from the pain).

It was truly surreal.

I finally began to see the light yesterday evening.

And today I am beginning to really feel like myself again.

And I am incredibly thankful for that.

I don’t know if the flare was worse because of daytime heat exposure on Sunday (I usually only go out for nighttime activities during the summer) or because I was active when I was already flaring or just because. Regardless, it was so so frightening for me and I know for my family as well.

RA is just a beast.

The key now is not to allow myself to become fearful of the flare – as that is so easy to do after one so scary – because I can’t live in fear. Instead, I’m picking back up with my practice work and my writing plans and the daily posts on my LHH site and my to-read list and our wonderful trip to see our family tomorrow.

Always forward.

Happy Weekend, y’all. Have a wonderful Father’s Day!

Grace and Blessings.

 

 

a new diagnosis

Friday evening, I was still dealing with the RA flare I wrote about in my previous post.

I had come downstairs with my dinner to sit with my husband and started to feel weak and as if my heart were racing. When I checked my pulse, it was around 147.

I told my husband I needed to go upstairs and take some medication and get in bed.

By the time I made it to our bedroom, the situation was worse.

heart rate 167.

So I took a high dose of metoprolol and laid down for several hours. When I got up, I still was feeling pretty gnarly – though thankfully my heart rate was in the 120s and 130s. Still, Sara and I loaded up and set out for the ER. . . again.

After many hours, the good news is that the only thing cardiac they found – other than my mitral valve prolapse – was a low potassium level. I’ll be seeing my cardiologist sooner than I wanted to work on the rest.

The bad news is that I now have full-blown diabetes.

I was told last year that I was pre-diabetic which wasn’t unexpected with all the steroids – but still stunk. Additionally, my Dad and literally all of his immediate family members have diabetes. Soooooo. .  .

I was started on metformin and am doing all the things I’ve been telling all the patients to do for all of these years.

And the pill collection grows. This is just AM and PM, not including all the meds I take during the day:

While I know this is totally manageable and I will be okay, right now I’m pretty damn upset about it, both because it is yet ANOTHER diagnosis and also because I’ve seen way too much diabetes over the years. I’m just sick.

Still, I have had plans with the girls for today for quite some time, so, even though I still am feeling like Hale, I am going to get myself ready and go. Sara’s best friend is coming as well, and, if I feel too bad (a distinct possibility right now), I can always turn on the ac and some music in the car while they enjoy themselves. I’m not ditching them now.

And the next few days will be spent figuring out how I plan to change my diet and getting myself to swim and logging my blood sugars and getting a handle on this – and then I will be okay.

Be well, everybody.

Grace and blessings.

 

 

 

a sick week, kate’s passing, and nights in the bad place

First, let me say that, for whatever reason, I am having an incredibly sick week. This will be relevant to the rest of my post in a bit.

Two days ago, a gnarly flare led to my being unable to stay awake for more than a couple of hours at a time and my husband and daughter began conspiring – in the best kind of way, out of concern for my rapidly declining health – to get me to the ER.

So, late last night, Sara and I set out for the emergency room, where I got my usual: lots of labs, fluids, IV steroids, and anti-inflammatories.

Of course, my inflammation markers are all kinds of up. That wasn’t surprising.

We got home early yesterday morning and have rested all day but I am still running a gnarly fever with some nasty body pain. The pain is improved a bit but far from gone.

Soooo. . . I am taking increased doses of oral steroids – trying to avoid a second round of IV steroids – but, if things aren’t better in the morning, sometimes the RA wins. . .

hrrrmmmm. . .


Something else that is heavy on my mind – and many other women’s it seems – is the sudden death of Kate Spade.

Like a lot of women my age, I first saw her Sam handbag when I was 19 and the woman that I was nannying for had it. I had never heard of her but I fell in love with it and had to have one. Needless to say, it took awhile for me to save up, but, oh my word, when I did get it. I loved that bag so freaking much.

And now? These days I’m a consignment shopper and thrifter – and generally not a brand person – but I still love Kate. I have a bag I carry regularly but she travels with me every day in this form:

I have every intention of carrying it until it actually falls apart – kind of like I did my first Sam bag.

I don’t even bank with the Regions in my town, but when I have gone in for business stuff, the sweet lady who is the head teller noticed it was Regions green and I told her our Mom retired from Regions. Because of that, she remembers me and my lil’ wallet, even though I’m not a customer. Just a funny, sweet thing.

So I was totally shocked when I woke up Tuesday morning to the notification that Kate had passed away and then just heartbroken when all the details began pouring in.

Tonight, as I sat down to write, I looked through some articles and think this one bears passing on (just because I love it):

https://www.vanityfair.com/style/2018/06/kate-spade-remembered

Because she died due to depression and anxiety, there are a few things I want to share:

I noticed that many people who knew her wrote that she “seemed happy” and almost implied that they supposed that wasn’t true and both her husband and father spoke with her the night before she died and said she was upbeat. She may well have been. Her happiness didn’t have to have been an act.

Two common risk factors for suicide are chronic physical illness and mental illness. As someone who lives with both, in the form of RA and anxiety, I can honestly say that, even during flares, pain and anxiety are often much easier to cope with during normal waking hours than in the middle of the night so I can see how she could have been fine that evening and then very not okay later.

During the day, there are distractions and there is activity and people are around.

At night, when it’s quieter, it’s easier to get into the bad places – anxiety tends to come on and pain actually tends to be worse – so you are really in danger if you are already struggling in some way.

I am so blessed to have my husband and daughter I can wake up if I really need to – if the pains are paining too much or the anxiety has me on the ceiling – and this little dude who always burns the midnight oil with me on wakeful nights:

However, everyone doesn’t have that support system – and everyone who struggles NEEDS one – so the best advice I can give is for us to all do our best to be that friend and that family member who is available – to be woken up or inconvenienced or to go and sit with someone who is having a really bad night.

And, also, let’s all love on our people and be very aware of when they are struggling.

Sometimes life is just plain hard, and everybody – no matter who they are – needs help at some point.

Be well, everybody. Look after your people.

Grace and blessings.