frightening doctor visits.

I remember my very first question on my NCLEX exam for my nursing license being an orthopedic question – my least favorite subject – and me thinking, “This can’t be a good sign.”

And then I REALLY couldn’t believe the irony when I was hired to work the orthopedic floor as my first job – but I transferred to general med/surg as soon as I could because ortho was not my jam.

Well, 15 years later, ortho is still not my jam, but I was sitting at the first of two orthopedic appointments I had for myself today when this doctor I was meeting for the first time started just casually giving me all kinds of frightening information.

After looking me over and poking on me, he determined that, apart from stress fractures and bursitis, an MRI of my hip was needed because a condition called avascular necrosis (AVN) seems likely.

As most of my readers probably aren’t familiar with AVN, here is a brief definition:

As is mentioned above, AVN is frequently caused by long-term steroid use. Also, a major issue I’ve been having – that was so severe I was limping this morning – is pain radiating down my thigh to my knee. As you see listed, that is a symptom. AVN is also linked to lupus. There are many frightening indicators.

So,  the doctor mentions quickly that I need the MRI because of this condition and then says casually to my daughter and me, “The severity of the AVN determines the size of the graft.” He then says, “So we’ll see you to discuss everything after the MRI. In the meantime, we will treat with that as our presumptive diagnosis. So use your walker and don’t fall.” Then he just walked out. No answering questions. No concern for my pain. Just dropped a bomb like that and LEFT.

And the real kicker was that his assistant seemed surprised that I was crying when she came in. I just told her I was in severe pain and completely upset and confused. Based on her reaction, patients must leave in that condition all the time.

Anyway, I took my MRI paperwork and I will have it done. I will then pick up the results and see another orthopedist. I wouldn’t let this one operate on my worst enemy, as his treatment plan for a presumptive diagnosis of AVN is “use your walker and don’t fall.”

And that was just my first appointment of the day.

My second was a followup with my foot ortho guy. And what did he have to say?

Both of my feet are still all kinds of broken – no kidding – and I’m still not a good surgical candidate. (That especially sucks since the hip guy says I likely NEED some hip work done. Great.) Anyway, he said I could come back in four weeks to recheck them – or sooner if I “fall or something.” What the frack? What is the deal with everybody at this office and falling today? He really seemed put out to see me since there is no procedure for him to do.

I decided today to find a new foot ortho doc as well, because I understand that there is no big billing in office visits instead of surgery but somebody has to follow my broken feet. I have multiple broken bones in both of them.

And again I left there crying.

And, just when I got it together to at least get us home, my daughter lost it – because all of the doctor craziness she had seen and heard today had scared her to death for me. She goes with me to all of my appointments and has NEVER reacted like that. Today was just that terrible.

When we got home, my smartchair had been delivered which I am so incredibly thankful for – but, WOW, what a big deal too. Especially with the AVN business, I am so glad it was delivered though. As I mentioned in a previous post, he shall be called Maximus.

He is this style KD Smart Chair:

He is incredibly comfortable and drives like a dream. I was so exhausted today that I really didn’t get to drive him as much as I would like so tomorrow I’ll be learning more – and I’m sure there will be pictures of our adventures once I gather myself.

Even this post is hours after the fact because I totally hugged my Wonderpup and collapsed this evening.

This is some rough stuff, y’all.

All prayers, good vibes, and warm fuzzies are greatly appreciated.

Be well, everybody.

Grace and Blessings.

 

 

mother mother

For whatever reason, somehow my biological mother – who I haven’t seen in 18 years (and that was a traumatic run-in at the ob-gyn’s office I wrote about in one of my Mother’s Day posts) – made one of her occasional pop-ups on my Facebook tonight.

That hasn’t happened in a couple of years either and it definitely caught me off guard to say the least.

Don’t misunderstand me – she made no contact – it was just a “friend suggestion” type thing. (And, no, Facebook, I don’t want to be friends.)

For new blog friends, my parents divorced when I was two, and my dad raised me with my grandparents next door.

two year old me – with a cat. there is always a critter. 😉

I saw my mother for visits briefly when I was young and then she was gone, only to attempt to reappear when I was an adult. That didn’t go well. She now has four other children, who I’m sure are lovely people, but they are total strangers to me.

I want nothing to do with her.

All of that said, I was a bit shocked when her name appeared on my Facebook tonight and I guess curiosity got the best of me and I looked at her public profile.

Though I was nauseated by the whole experience, I really didn’t see anything unexpected at first. She lives in a small town about an hour and half from me and we live completely different lives. I saw her kids, her job, the usual. . .

THEN, as I was about to take some deep cleansing breaths and move on, as I was done, I saw it: Mother. Of. Five.

Five. Counting me.

Huh?????

Y’all, I’ve written about it before on Mother’s Day: I’m almost 40 years old, but mother abandonment – especially at two freaking years old – cuts deep. And it takes a LONG time to deal with. And it always hurts in its own way.

And it does matter.

And it also matters that she has the audacity to count ME after all these years.

So, for several minutes I saw red. I was so freaking pissed. I mean, ready to hop in Janis the Bug, drive to their little town and go door to door on my broken feet and hip – which has hurt worse today than it ever has – until I found them and enlighten her as to why she has NO right to count ME kind of pissed. Luckily, my better angels have since prevailed.

Now I’m just a bit astonished as to how anyone can be so clueless.

And I’m also profoundly grateful – to the amazing women in my life.

To my precious Grandmother, to my aunt Barbie, to our wonderful Mom now.

So I won’t be bitter.

As I said earlier, my life is very very different from hers.

And, despite my illness, God has given me many blessings and more than I could have ever asked for – and I know that removing me from some situations was His protection. He had better plans all along.

Oh, and I’m making better use of Facebook blocking now too. 😉

Be well, everybody.

Grace and blessings.

an honest conversation about the ugly things

When our state Attorney General’s wife, Bridgette Marshall, passed away last weekend, something about her – and his family – really affected me and I couldn’t get them out of my mind. Information started slowly trickling in, some from reputable news outlets, some rumors, but, by Sunday night, I understood that she had some mental health issues and had committed suicide.

My heart just broke for her sweet daughter, Faith, who is in the midst of planning her wedding, and I sent her a message of condolence.

I hadn’t heard much more until I received a notification on Facebook that the AG was going live on Wednesday – which seemed odd as his wife’s funeral wasn’t even until Friday. (I will link the entire conference at the bottom of this post.)

It turned out that there had been so many incorrect things blogged and published in the media that he and his family decided to tell his wife’s story – and listening was both heartbreaking and all too familiar.

As I could have predicted – or maybe just knew? – Bridgette suffered from chronic pain due to migraines throughout her life as well as depression and anxiety and gastroparesis that sounded like it was probably related to some eating disorder issues. As a result of her chronic pain, she also dealt with opioid dependence. Altogether she lived with so much suffering mentally and physically – and apparently the night before she died, strange blisters had popped up on her feet so yet another physical problem that she couldn’t figure out – and it was just too much to bear.

And here is what she said to her husband that just floored me: “I don’t have a purpose, and I’m tired. My body is failing me and I don’t know why. I’ve had pain for a long time and I don’t want to endure it anymore, and I’m just a burden.”

If you’ve read this blog for any length of time, these are the very thoughts I’ve tried to express on the bad days of dealing with chronic illness. At times, I’ve typed damn near these exact words and then gone back and softened my language so as not to scare the ever-living hell out of my loved ones. But the bad feelings are real – and expressed by pretty much every spoonie I know at one time or another.

At the same time, I’ve been doing some reading for a piece I want to write and I’ve come across several brutally honest essays by fellow spoonies. The most striking perhaps listed suicide as her “retirement plan.” She also described being silenced by loved ones when she tries to discuss her feelings because it is too much for them to hear – which I can understand but this not helpful. After all of my reading, including some of the awful comments regarding Bridgette’s death, I think it is time for an honest conversation again about living with chronic pain and mental illness (at least what I know of it), not to be a bummer, but to help healthy people understand:

For me, my illness has taken a turn for the worse – for no apparent reason other than that it is a progressive illness. I’ve been spending a great deal of time working on my computer, sitting in my spot, because sitting – and napping – is about all I can do quite often. In response to this sudden worsening, I spoke to my doctor today and will be increasing my chemo injection again – which is guaranteed to make me sick as Hale, and lay me out even more for a day or two, so I am just dreading it terribly.

See, I already do feel like a burden quite often. It is absolutely nothing anyone is doing. My family is wonderful. It’s just that I used to have a good job and my own income and be able to keep up with housework and do the things that needed to be done and now I do none of those things. In addition to that, I have been so sick lately that my medication costs have been EVEN MORE ridiculous than normal – so not only do I not contribute, I cost a hell of a lot. Yes, it’s enough to make anybody feel like total pooh.

Lupus is one of my secondary diagnosis – but it isn’t secondary in terms of cost. 😦

Feeling my body getting worse has brought on all kinds of crazy anxiety and the best thing I can do is breathe and rub on my Valor and pray hard and hang on to my lil’ weenie dog. The physical definitely triggers the mental. That’s true of everybody I think.

Also, living in constant pain is a total assault on a person. There is no escape from it. Sometimes it’s better; sometimes it’s worse – but it is ALWAYS there. And it sucks. There’s no way around it. I have written before – many times – that the suicide rate among the chronic pain population is three times that of the healthy population. I want to be sure that people understand how serious this is – and that they offer support to their loved ones who need it.

And all of this gets exhausting.

I am so thankful for my amazing support system – my husband, my daughter, my family, my bestie, the world’s best weenie dog. . . I am also thankful to be able to write and feel that I can be of service in this way. It helps tremendously.

And, as I posted earlier this week, I keep focusing on the good things and the things I want to do and seeking joy regardless.

As always, no matter what, we push forward. Always forward. It is the only way through.

Be well, everybody.

Grace and Blessings.

 

 

 

 

 

 

wheelchairs and mala beads

Probably the most well-known quote from the spiritual teacher Ram Dass is “We are all just walking each other home.”
You’ve likely seen it before. It’s a favorite of mine.
He is one of my beloved teachers.
So, tonight, I finally watched his Netflix short documentary, “Ram Dass, Going Home” about his post-stroke life and older years in Maui and it was so moving to me.
It spoke to me about living a life of dependency – a fear of mine with RA – and learning to let things go. He said, “I don’t wish you the stroke but I wish you the grace from the stroke.” Oh my heart.
Seeing him sitting in his assistive recliner, with his mala beads, in his home filled with altars he can no longer sit at. . . I understand. And to see a dear teacher handle this with such ease makes it easier for all of us to do so as well when we have to.
If you have a chance, watch his documentary. It’s really beautiful.
And it even ends, “Love everything. Let’s all walk each other home.”

setting things right.

I realize now that I waited much longer than I should have to make a much-needed change in our home – now that it is done.

Why?

Mostly because it was an incredibly hard thing to do as a mother. It was a long long walk to the letting go.

Cheryl Strayed.

And also because I’ve had to come a long way with these type of boundaries – even when they were very very necessary. They don’t always come easily to us hippie types.

And, in my case, I deeply care about my husband and daughters, and I care about our home being the cozy, welcoming, safe place we all deserve.

So it took some time but we made it.

It’s taken me awhile to write what I needed to – even though it’s good. It still took some time to process.

It’s been almost a month.

My son is happier with his dad so far as I can tell.

We are now a family of four – plus Wonderpup and Zoo. And, oh my word, at the difference. . .

Where there were many things going on before – a great number of which my husband and I weren’t even aware of – now our house is calm and open and joyful.

The girls wander in and out of my room and office during the day while I work and they are working on their own projects as well.

And some days we take the day off and cozy up and watch Netflix for the day instead.

Our whole family had a restful holiday weekend for the first time in forever as well.

It is how it is supposed to be.

And I am thankful.

Happy Wednesday, y’all.

Grace and blessings.

 

changes

The past few weeks have been a time of major transition in my world.

I’ve gone from being an integrative nutrition student to the beginnings of a holistic health practice (my joy!).

Our youngest daughter has wrapped up all of her schoolwork for this school year and I am officially out of the middle school business forever (hallelujah!).

And, after a blowup of epic proportions, my son has permanently moved out of our house and to his fathers.

As he and his step mom picked up his things today (two weeks after he left), I realized that this should have happened much earlier. He wanted to move a long time ago and would have been happier and the positive shift in our home is palpable. This is what was supposed to be.

Still, the stress of the blowup and getting him moved and having our home in disarray has not been kind to my body and I will be spending the weekend trying to put out a nasty flare. That was to be expected.

After I hopefully have this contained and my pain under control, the girls and I have some fabulous simple summer plans:

  • We have found some amazing free summer activities around town, like an art class for Laura that she is really excited about.
  • I am leading my first 3 Month Group Coaching Session – and I am super stoked about it. I have several other things in the works at Leilani that I can’t wait to share as well.
  • Sara and I are working on learning a language and starting a super nifty cooking project also.
  • We are all starting a swimming for exercise program.
  • My book. My book. My book.
  • We are going to binge Gilmore Girls because. . . Summer.
  • We are just going to have a happy Summer and enjoy each other.

Happy Friday, y’all! Have a super safe and fun holiday weekend!

Grace and blessings.

 

the mother’s day mixed bag.

Yesterday was honestly the best Mother’s Day celebration I can remember. We went to spend the day with our family at the lake and had the best time talking and laughing and enjoying each other. It was simple and wonderful and I loved it.

Today has been good too. I’ve mostly rested – travel wipes me out – and now am up to celebrate Mother’s Day/Henry’s Birthday (oh yes, there will be pictures). I just made vegan mac n’ cheeze and grilled cheeze sammies and Sara has GF cupcakes in the works. It’s going to be fabulous.

Still, my feelings about Mother’s Day (in the big picture) are a mixed bag and this year threw in another wrinkle.

As I’ve written about before (last Mother’s Day), my biological mother abandoned my father and I when I was a toddler and that sting doesn’t go away. Mother’s Day when I was young was always particularly painful without her.

I had my sweet, sweet Grandmother though (living next door to us) and we were so close. Since she passed away in 2014, that has been a hard thing on this day too.

As an adult, though, I’ve been blessed when my dad married a wonderful lady, and, then later, when I married my husband, I also got the best mom I could have ever asked for too. I am so thankful for both of them on this day (and the rest of the year as well).

Another difficult thing that certainly isn’t a secret but I have never written about is losing my boys. My twin sons, Aidan and Bailey, were stillborn due to complications with my pregnancy and I became septic and almost died myself. It was a terrible time. I don’t speak of it often but I never forget them or their birthday or fail to think of them at holidays (or any other time). This day seems to me to be a reminder of loss.

However, I also have been blessed with three healthy children who are so nearly grown and for that I am so thankful. I celebrate that on this day.

The wrinkle this year is that the relationship with one of them has become quite strained and there is nothing I can do about it. This day, having not even heard a word from that child, is so painful in that regard.

So, Mother’s Day isn’t really wrapped in a pretty pink bow for me. I wish it were.

(Father’s Day is my jam: I have my dad who raised me, I have the most amazing husband who is so good to us (and I only wish I could do bigger and more for him), and I have his dad who I just love so much too. I’m all over Father’s Day.)

But, still, maybe this is what is supposed to be. Maybe God can use all of this.

I don’t write all of this to be a bummer. I’m not sitting and feeling sorry for myself. Quite the contrary – I’m about to get myself ready for an awesome Beauty and the Beast Doggie 5th birthday party (and, if you don’t think Henry is one of my babies too, you REALLY don’t know me).

I write because I know I’m not the only one who struggles with this day, and, whether it is the loss of a mother or child or grandmother or facing infertility or whatever other pain they are dealing with, I want people to know that they are not alone.

I want them to know that it’s okay if this day isn’t pretty pink bow wrapped for them either or Hallmark approved. It’s okay to skip church today (the Mother’s Day service can be an arrow to the chest of someone in pain) and watch movies in bed all day. It’s okay to do whatever makes them feel best today and not worry about.

Most of all, I want them to know that they are seen and cared for and loved.

That may well be the purpose in the pain.

Be well, everybody. Be good to each other.

Grace and blessings.