The Pain Rollercoaster

It's a new blog look for a new start!

So, let's start with the beginning.

When I was a kid, I was never sick. I rarely missed a day in school. I played sports. I did everything kids do. Nothing stopped me.

When I turned 16, everything changed.

In short, my emotionally distressed self developed an eating disorder that led to 12 long years of active abuse to my body. I alternated starving myself with binging and purging, and every day I exercised obsessively. Even after discontinuing the eating disordered behaviors, I exercised religiously and hard.

At one point in my running career, I decided to train for and run a marathon.  I actually ran a full 26.2 miles as part of my training but never got to run in the event because I had an intestinal blowout of sorts. Inexplicably, eight inches of my colon died somewhere along the way, so of course, I had surgery to remove it.  (Frankly, if I had to guess a cause, I would say training on very little food to fuel me paved the way.)

After recovering, I tried running regularly off and on. I say off and on because I always ended up with some kind of injury. It was only two years ago that I admitted defeat as a runner and resigned myself to walking for exercise. I miss running. It's such a great calorie burner. It kept me thin. And while I don't actively have a diagnosable eating disorder, my eating can still be pretty disordered.

Let me explain: I've come to terms with the fact that once an eating disorder, always a disorder of some kind. Most often for me and for others I know, it manifests itself in a poor body image. That part never has gone away, no matter how hard I've tried acceptance. As a result, my relationship with food has never really become healthy.  I have had periods of healthy eating, but like most people who diet, I have never maintained long-term healthy eating.

So I admit it: My eating habits are still crappy a lot of the time. If it weren't for Dorsey's cooking, I would rarely eat anything healthy; I would not eat regular meals. I could easily snack my way through life. I'm just messed up that way.

But that's not all of the abuse on my body. For a period of several years, up until six years ago, I also abused prescription medications with alcohol. For some unknown reason, my body always hurt. I didn't feel well a lot of the time. I would go to doctors and be treated for various symptoms, from my gastrointestinal issues to pain. I'm telling you, for the past almost 20 years, it has always been something and always some kind of pain. I was tested for so many different diseases, but nothing was definitive, except fibromyalgia.

I have continued to have pain. Pain everywhere. Five years ago, I started going to a pain clinic for treatment. MRI's indicated three bulging discs in my spine, which partially helped explain pain. Fibromyalgia, of course, is a big cause. I had been to a rheumatologist for the fibromyalgia, but I stopped due to his incompetence. I also continued to have migraines.  By the pain clinic providers, I was prescribed various opiate drugs, and, frankly, I did very well on them. I can proudly say I never abused the medications or received a high off of them. Those days have long passed.

Then the United States got into an opiate addiction crisis. Opiate overdoses and deaths became a serious problem, so the government cracked down on the medical community; I got a knee-jerk reaction from the clinic out of it. A little over a month ago, the clinic discontinued my pain medications, citing fibromyalgia is not indicated for treatment with opiates. (And it's not; in some cases, it can make it worse.) Somewhere along the way, they seemed to have forgotten the other sources of my pain.  Don't get me wrong; I didn't want to have to take Hydrocodone, or Fentaynl or Suboxone or something just as dangerous and strong for the rest of my life. I hated going to that clinic once a month so I could pee in a cup in order to get my refill like a good little drug addict. I couldn't help but feel treated like a drug-abuser, even though I didn't abuse any of my medications. I was just thankful to get relief. It wasn't perfect relief, but, as my dad has always said, "Ol' somethin' beats ol' nuthin'."

For the past five years on strong pain medications, I've still had lots of days of not feeling well, but my lifestyle is such that I have been able to manage it. I've been fortunate to not have to work and to be able to pursue hobbies I love. I get to do my antiques business.  I've gotten to drive myself across the country many times. In short, I've managed well enough on my pain medications.

But everything changed a month ago when taken off of my opiate medication; instead, the clinic prescribed me a couple of things to help manage withdrawal symptoms, and referred me to a rheumatologist.  That referral was for an appointment three months down the road! I was so angry with the pain clinic people, not because I didn't have the opiates anymore, but because now I had absolutely nothing to manage my pain.

So here's the bad news/good news part:

Bad news: I have miserably suffered opiate withdrawals, despite the antidotes (it feels like the flu times a thousand), and my pain has SKY-ROCKETED. Clearly, the opiates had masked the majority of my pain for a long time.

Good news: It's only by the grace of God and maybe some help from another doctor that I got in to see the rheumatologist earlier than January.  I really, really, really like Dr. Davy at Allergy Arts. She was so nice and supportive, as was everyone else there! I finally felt like my pain was being treated as legitimate and not all in my head. (It's really hard not to feel like a head-case without diagnoses.)

Dr. Davy performed several physical tests, took sonograms and X-rays and seven vials of blood.

Now, we finally have answers. I have been diagnosed with rheumatoid arthritis and lupus. When told, my response was, "Oh, shit!" And then I cried. These diseases don't have cures! This is lifelong! These diagnoses mean I have one disease that causes muscle pain (fibromyalgia); another disease that causes pain in the small joints (RA); and another that causes pain in the large joints (lupus). That's pretty much pain all over.

But there's still good news in this: I'm healthy internally. These diseases haven't done anything to my organs or blood or anything else important yet. Dr. Davy told me that with treatment, my issues can be contained from progressing — I even asked if I would get really big knuckles and curled hands someday. The answer was no, with carefully monitored treatment. (That's great news for the jewelry freak in me!)

The fact remains, however, that pain will always be part of my life. Right now, it's exceptionally bad — but still lots better than last week. As I said in the previous post, I've lost a lot of sleep and cried a lot of tears because I've hurt so badly.

The medications I've been started on will take effect slowly, I'm told. For now, I get to hold on and just bear the pain for awhile. However, Dr. Davy and her nurse practitioner also told me that patients do really well, generally, on these treatments once they take effect. I'm hopeful that will be the case for me, too.

These illnesses, including fibromyalgia, are not caused by just one thing. It takes several pieces of a pie to create the whole problem. In my case, one significant piece is the amount of trauma I've subjected my body to for so many years. That's why I said in the last post that it's my fault. It truly is, though it wasn't on purpose.

A familiar adage says that youth is wasted on the young. That has been true for me, and I very much regret how badly I mistreated myself. It's not that I intended to hurt myself or create such problems; I was just messed up all those years. But there are consequences for our actions, and these are mine.

I'm not messed up (much) anymore, so I have to get serious about taking care of my nutritional health. The goal is to contain the diseases and prevent progression, as well as pain management.

While neither of those diagnoses are good, I'm thankful to have real answers so that I can be treated properly for them. The rest is up to me.

And ... it could always be worse.

Five things about grief and moving forward in healing NOW!

The last time I posted was a year ago, on May 24. As I told someone recently, I haven't much felt the desire to write since Mom and Dad went on to their Heavenly home. Besides, most of my posts after they died were grief-filled downers or "boring" stuff about starting my new business, Tin Cats Antiques.  I didn't know what to do with myself anymore, so I couldn't write. I've been immobilized in my grief, plain and simple.

And, people, in general, stopped reading my blog. Readership when the blog was immensely popular consisted of wonderful, supportive fans of Mom and Dad, and friends kept up with their sad and painful journey through my writings, as well as the difficulties Kim and I faced in the caregiving process. We received so much support, I felt both overwhelmed and grateful.

My readership reflected exactly what happens with emotional support after someone you love dies: It died. I don't mean people stopped caring, I just mean people are people, and it's difficult to watch someone suffer and to believe you don't have the right words to say or to know how to help. We tend to turn away from that which makes us feel uncomfortable. That's just human.

So a couple of weeks ago. I posted an apology of sorts on Facebook about dredging up my grief again. It's anniversary time for Kim and me: Mom died three years ago on May 13, and Dad died three years ago today. I used to work with grieving people in my counseling career, and, of course, I saw people struggle hard when anniversary dates rolled around. It's just a well-known, given thing that happens to grieving people. Research supports it, as well.

And now I know it.

I apologized in my post because I don't want to wear people out with my stuff, but I posted anyway that, yes, it's anniversary time, and yes, I'm feeling it. (And for some reason, it's been worse this year than last.)

I received responses from friends I think I intuitively knew would come from my friends: "Don't apologize for your feelings." "Friends will be supportive, regardless."

That's true, of course. Totally true. True friends will be supportive, no matter where you are. I'll take it even a step further to say that probably if you find yourself grumbling in your head or wherever you grumble, "Get over it already" to anyone who is grieving, you might want to "unfriend" that person, both Facebook figuratively and Real-Life literally. Blunt, but true.

Five truths crystalized for me that day. Actually, they are absolutes I've learned about grief, grieving people, and friends of grieving people:

1. Grief never goes away. Ever. The pain can lessen, and then it can come right back and bite you unexpectedly. But the pain remains forever, and I would submit that the amount of pain is in direct proportion to how much love you have for the people (and pets) you lost.

2. We do not "get over" painful losses. As I was told by experienced others and now know to be true, we instead must learn how to live differently, without the loved ones in our lives.  Therefore, never tell a grieving person something like, "Don't you think it's time you moved on?" My response to anyone who would say that to me now is, "No, but I do think it's time I moved on from you."

3. No two people grieve alike; therefore, never tell someone how he or she should go about grieving. There's no right or wrong way, (although we do need to be mindful of getting stuck in unhealthy ways; that's a post for another time.)

4. Grieving people loved their lost ones so much that we want everyone else to love them that much, too. Seriously. We want you to know just how special and awesome they were. We want their lives to keep mattering, forever and ever. We want their legacies to live. Therefore, let us talk about the loved ones we've lost, as much as we want. And you can talk plenty about them, too. We desperately crave hearing your stories and memories about the people we've dearly loved. Do you find yourself annoyed by this or uncomfortable with it? Well ... you might want to rethink that "friendship" thing ...

5. There are no right words to say. Therefore, you don't have to avoid us out of fear of saying something wrong — except "get over it," of course. All you have to do is be there. Just listen. Just hug (or virtual hug). Just tell us you love us. Just tell us a favorite story about the ones who are gone. Check in every once in awhile. Just let us know you're thinking about us. And if you really think you have to have the right words, then the right words are these: "I don't know the right words. I just know I care about you, and I'm sad you are hurting right now."  It's not hard at all.

In addition to clarifying those five absolutes, something shifted positively within me when one of my mom's friends told me in those Facebook responses that my mom was very proud of my writing talent. My writing talent? Really? I thought I mostly practiced word vomit — at least that's been my style for the past three years.

And here's the coolest thing: On May 12 (the day before the anniversary of my mother's death), I was cleaning out the back house for an upcoming garage sale when I started rummaging through the two boxes of memorabilia, pictures, school assignments, essays, Little Dribbler's uniforms, report cards, calendars, artwork, BARBIES!, "Toddy" bear, my Audrey doll, letters and cards (email didn't exist then!) from family and friends — from birth through graduating with my bachelor's degree — that had been stored for years in my parents' attic. I found things that made me bawl hysterically, but I equally discovered things that made me laugh hysterically or smile with happy memories.

And again and again I read Hallmark cards from Mom and Dad signed, "We love you." "We're proud of you."

New ideas for blog posts started to flow that day, so I'm going to do my best to write again. I would like to honor my English teacher/Librarian mother's enjoyment of my writing.

I don't believe in coincidences. I believe that day I spent blanketed by memories, plus your supportive responses to my Facebook apology, edged me forward in my personal healing. That's just how it works, and that's why we cannot judge another person's grief journey.

Thank you for continuing with me on my journey. I hope you get something helpful from me now and then.

And I'm so grateful to report that the new ideas I gathered for future blog posts have little to do with debilitating grief. Thank you, God ... I think I get to move forward now.

A Fine Little Something About Grief

It's been five months since my last post. Mostly because every time I think about it, I think, "Who the hell cares?" So I don't write.

Perhaps that attitude is indicative of depression. Yeah, probably.

But here I am, and it's been exactly two years since Mom and Dad left us. That's how I feel: Left. They left us.

Left us.

I am selfish, yes, I know, but I miss them. You might think after two years, I might feel better. I can tell you that what is better are the memories. I think more about the good times than those awful, wretched months after Mom had that stroke and then Dad got sicker and then they both died.

So that's good. I don't think I could have gone on if I lived in the middle of that still.

The good memories make me smile. But those memories also make me miss them more. And that's why I feel left.

I understand it's not their fault. God chooses time of death and all that. But that doesn't change my feelings. So, yeah, they left us. All of us, not just me.

You see, it's still in the back of my mind how inconceivable it is that they are gone, because their influence is still everywhere. I guess in some comforting way, then, they are still here.

But it bugs the heck out of me that I can't see them or interact with them anymore. It makes me angry, in fact.

And I think, "God, why can't you let me see them together, just one more time, to see what they are doing with you and how they are feeling and what they are thinking? I don't think that's too much to ask."

So I will continue to wait.

In the meantime, I trudge along, still trying to find my way in this "retirement" type stage of my life. It's retirement because everything is part-time and on my own terms, mostly. I do the antiques, I craft, I listen to audio books, I take care of the house and the animals. And I sleep and rest a lot due to the chronic pain issues I face. That's a huge factor in my depression, not just grief. And living with chronic pain is a whole other post that maybe someone else who reads might relate to. So, I'll just shove that aside for now ... even though I can't really because at this moment, I hurt.

But I don't always just trudge. I skip sometimes, too, because that's life. Even in grief, good times happen. Lots of good times. I am grateful for those, and I think about those times, too.  So don't worry too much about this downer post. Keep in mind it is the anniversary of their deaths, so that counts a big something for my attitude.

I read a book recently in which one of the characters said, "You never really understand something unless it happens to you."

She didn't say "until it happens to you." She said unless.

Think about it. That's so true. There is no full comprehension about what anyone is ever going through. And that's how grief is. That is the one thing I have learned about it. It is my own grief to muddle through, just as your grief is your grief.

All we can do is try to love one another through it, without judging and without controlling.

So here I am, two years down the road to simply share that whatever you are grieving and however you are grieving it, that's fine. It's yours and you're doing it just fine. And if you don't feel like you're okay in your grief, then get help with it.

I have. And that is just ... fine.

Still just that little girl at the little red table

My new all-encompassing activity of life, from morning until night. Because that's how I do things.

When I was a kid, I sat for hours at the red aluminum child-size card table in one of the two matching red chairs, and colored, painted and drew for hours and hours and hours.

I recently reverted to that little girl when Dorsey surprised me with a "craft" table for Christmas. I actually got it about a week before Christmas, and I knew I was getting it, because Dorsey made it for me. I guess I was spending enough time making messes at the dining room table that something had to change. I've painted A LOT of wooden plaques with game boards, pineapples, sayings, saltbox houses, roosters and chickens ... And, really, where the heck am I supposed to put all of these things?

But that's beside the point. I love my new little red table! I've been spending most of my time at it. I keep thinking that if I spend enough time at artistic endeavors, like I did when I was young, I will get better and better. Maybe I can regain some of that talent I had as a kid. (You know ... if you don't use it, you lose it, right?)

Lisa has seen her sack, but not her gift!

Sadly, I struggle with the same monster that lived in my head as a child — the self-deprecating, mean, evil voice that criticized every effort at every turn. What wasn't good enough then still isn't good enough now. I find that horribly demoralizing, considering the fact that 50 isn't that far away.

I'm not quitting, though, because I still get satisfaction from making these craft table messes ... the same as I did when I was little. I know enough now to understand three things: One, practice will make me better; two, I don't have to listen; and three, depression makes it worse, but this, too, shall pass.

I didn't really know these things as a kid.

Since about the first of November, I've struggled horribly with depression, which is nothing new to me; I've battled it my entire life. It's made its ugly mark on me in countless, destructive ways. This bout is mentionable because it feels worse than usual. My body hurts. My head, my bones, my muscles, my joints, my nerves. Every finger, every toe. Every hair on my head. I've slept a lot ... or at least lounged in bed or on the couch. I've watched every cheesy Hallmark Christmas Movie. It's a good thing I have many pairs of pjs. It's a good day when I take a shower. It's even better if I do my hair and put on a little makeup. (I apologize to anyone I've seen in public. I just haven't given a flying flip, just in case you have. I still had to go to the grocery store and run odds-and-ends errands, whether I wanted to or not.)

It's a good thing I got the Christmas decorations up when I did; otherwise, they wouldn't have happened. For about three to four weeks, I've been relatively worthless in accomplishing anything.

The new little red table.

But I did manage to paint Christmas sacks for wrapping presents. Not all presents, but a few. It provided an interesting solace for me ... after I threw away the first 10 sacks I did. And when I looked at what was most likely number 11 when I saw it again on Christmas Eve, I wondered why I hadn't thrown that one away, either. But I have to admit I've liked some of my creations. I've even wondered whether when Dad died, he channeled his talents back to me? I truly believed I had lost whatever God had blessed me with.)

I had some fun with this one ... and then I almost threw it away.

Painting sacks got me through Christmas. I have to admit I felt the grief of not having my parents here this year even more than last. Maybe I was still in a fog last year? Or maybe I was preoccupied with all the activity I smothered myself in? Whatever ... I felt completely lost this year.

And I will admit that I became one of  millions of scammed Americans recently. I will not share details, but it was related to my antiques business. Almost $1,000 later, I have been left to trust that the FBI is doing something with my tiny, insignificant little report. Somehow, I truly do doubt anything will come of it. I doubt, too, that I will ever know. That, in itself, is depressing.

We also spent $1,000 at the vet's office last week when we learned my precious Jasper has the feline leukemia virus. I had to beat myself up for awhile when I thought I had lagged on kitty vaccinations, but that turned out to be untrue, so at least I could give myself a small break there.

And I'm struggling with other things I cannot control and, thus, must learn to put somewhere in a perspective with which I can live. So I might paint so many sacks I can make a few paper quilts ... I don't know ... because there's a lot of bad stuff going on in the world right now.

What the heck does one do with painted sacks? I know it's a cheap practice medium.
When I went to bed last night, I wanted to throw this sack away. But I woke up
this morning and kept painting dots. 

And as I name a few of these reasons, I need to be firm in saying ... I — and the millions of other people in this world who suffer from depression — don't need a reason to be depressed. I know my life is good. I KNOW THAT.

But that's not how depression ... the mental illness kind ... works. I just happen to have a few reasons to exacerbate the monster's attack. So, yes, I suppose this one does feel a little more powerful than usual.

... God bless all the paper sacks and little red tables in my life!