Julia of Arabia

I seem to be having several micro-panic attacks. Want to hear about my latest one?

Sure you do. Humor me here, people.

I have this fabulous, shapeless, permanently wrinkled, white cotton tunic. I love this thing because it can be a zillion degrees outside and I still feel cool while I'm wearing it. It is wrinkled because that's how it's supposed to be so it's never been even threatened with an iron and I can just wad it up and toss it into my suitcase. It even has a hood which I pull up if I have been dopey enough to forget my sunscreen and my hat. I throw it on over a white camisole and anything else my heart desires, and presto. A comfy-wumfy protection against the sun outfit. It may not be the most flattering item of clothing that I have but then I'm not deluding myself here: there isn't one clothing item out there that would flatter this old carcass of mine these days.

I digress.

I'm thinking that all those eons of people living in the desert probably knew what they were doing when they wore billowy white clothing.

See? Peter O'Toole wore this stuff all over Arabia and stayed cool as a cucumber. I'm thinking that he probably didn't wear plus sized capri jeans and orthopedic shoes, though. 

So as usual, I goobered something down the front of my fave tunic the other day and tossed it into the laundry hamper, then promptly forgot about it until I wanted to wear it. Then did a mini-freak-out thing when I examined it as I added it to the washer.

Ewww. I don't remember what I goobered. Because it's just what I do. Terese and Greg call a shirt slobber simply a "Julia."

But my pristine white tunic was stained with something brightly colored and looked exceptionally nasty. I started the washer confident that as usual, this seemingly indestructible  thing would emerge as if nothing had sullied it's lovely white cotton fibers.

Wrong. After a heavy duty hot temperature cycle it still looked gross.

Mini-freak-out in the laundry room.

Then I remembered that since the tunic is made of 100% cotton it can be bleached. So I did.

Wahoo! Clean as a whistle! I love this thing. I wish I could remember where I bought it. If anyone sees one of these babies floating around the internet marketplace and it comes in plus sizes send the link my way.

They're on the Moooove again..

My little herd of Holsteins were last seen hanging around Greg and Terese's acres over Independence Day. I had just begun to wonder what the girls were up to when I saw this today.

What's that written on their signs......BACK.....TO......SCHOOL? And are they wearing notebooks and markers and other various school supplies?

Well of course they are. Somebody round up those three before they take off again.

Plugged in for a Recharge

Image found on Wikimedia

Yawn.

I've had a couple of pretty good days. Days that I've felt Reasonably Well. Love those days, just love 'em.

But of course, and as per my usual, I've overstepped my boundaries just a smidge. Time to rest up.

See y'all tomorrow.

ZZZzzzzzzz...

Sometimes it's not clear

Thanks to a facebook buddy that posted the link to this interesting article. Do you have a disabled driver hang tag? Do you every feel as though you are being judged unfairly by other drivers because our disability is invisible?

"I think I recognize you... I do. Before becoming a Mom, I used to live in your world of black and white, with everything in order, in its place. I had a plan, a schedule, a list of finished projects to check off, checklist and all. How wonderful for you that your life is so structured, so dependable and predictable that you cling to that line dividing right and wrong, black and white, and that you feel compelled to comment when you think someone is coloring outside the lines." Continue reading here.

Finders Keepers Losers Weepers

I experienced a small panic attack yesterday.

I know. Everyone in the whole world has these things and I guess I'm no exception. But this go-around was pretty weirdo even for me. It went something like this:

So I've discovered Land's End knit pants. I love them because they are practically indestructible, don't fade or stretch out in strange places, and are comfy beyond belief. And no, I didn't get paid to say that. Actually since these things are a bit on the pricey side, I've paid THEM a fair amount to say that...

The one downside that these pants have is that my favorite version doesn't have a pocket large enough for my cell phone. There's one little itty bitty zippered pocket thingie sewn in near the waistband for those people who are actually active in their activewear to stash car keys etc while they're running around being active.

Me? I consider these my ideal in-active pants. Ahhhhh. Comfy......

So the lack of a pocket means that I stuff my cell phone in my bra.

A few days ago, I remembered that I needed to return a phone call, and as usual wondered where I put that darned thing. I did the pat-pat-pat myself down maneuver -- right boob -- because I always use the right side of my bra as a cell phone holder, and where my pockets should have been, then searched my purse and headed out to the garage to check out Goldie's innards.

No phone. (Here's where the panic attack started.) I began to retrace my path through the house, crawled around looking under the sofa and chairs, made my way upstairs and began going through the pockets of my other pants. No phone. I went outside and looked in my hammock chair. In the driveway. No phone. By this time I was feeling pretty sweaty and anxious.

Finally in desperation, I grabbed the house phone and called my cell.........ring ring ring........

(Here's when the panic attack finished.) It was a pretty short lived panic attack.....because the LEFT side of my blouse began to blink colorful lights, vibrate, and emit guitar-strumming ring tones.

Honestly. WHO put it there?!

Two Day Shipping, Please

I love my un-spillable toddler sippy cup. That thing is worth it's weight in gold. 

John has commented several times recently about the stacks of junk essential items that I keep on my bedside table and his comments aren't particularly complimentary.

Pfffttt.

A bedside table isn't legitimately a bedside table unless it's groaning under the weight of at least five books. So THERE, Mr. Only-an-alarm-clock-and-lamp-and-one-measley-book Man. At the moment my table has nine books and personally I think there's plenty of room for more.

Last night I finished up my latest summer read: A Fatal Grace by Louise Penny. I love mysteries and Penny's Inspector Gamache is one intriguing character. I have to confess that every time I see Inspector Gamache's name I think of ganache. Mmmm.......cake.......

.::blink::.

OK. I'm back. Where was I going with this....righto. Books.

So in the wee hours when I finally finished the last chaper, I felt the same way as I do when I have one bite of a delectable fudge cake topped with perfectly creamy ganache icing: I want MORE.

Technology is a wonderful thing. I whipped out my phone, opened the Amazon app, searched for Louise Penny, and after scanning the list of her titles, chose one and hit the BUY NOW button. Brilliant!

There should be an app for middle of the night chocolate cake cravings.

What have you been reading this summer?

Blackberries Made Easy

Guess who is pictured below sitting in a tractor bucket? 

Yeppers, it's yours truly. Why would I willingly hop into a tractor bucket and ask to be dangled six feet up in the air in front of bushes with thorns large enough to pop a bicycle tire, you ask?

 Here's why: because extraordinarily yummilicious blackberries grow on those bushes.

Terese and Greg have lots and lots of 'em AND Greg doesn't mind chauffeuring us around in his tractor bucket to pick our fill of these beauties.

Greg says it's really, really hard work on his part.

 Nobody picks better than John. I think you missed the branch on the left, honey....

What a fun afternoon. We picked enough for four big blackberry pies and lots for snacking.

I love summertime. Blackberry season. PIE TIME!

Your Comments Deserve a Second Read

When I put a question to my readers, I do so with confidence because I know that the answers that they provide will be sincere. Helpful. Empathetic. So when I wrote Thursday's post entitled Serious Pain, I fully expected that y'all would respond with some amazing responses to this sjoggie's comment: ".....but I know I can't endure this for 30 years."

Even with these expectations in mind, I was blown away by the stellar qualities of your suggestions; so much so that I felt that your contributions to this discussion deserve more attention than can be found in a little text box hidden away at the end of the post. Here they are again. And thank you. To quote c little in her comment below, "You guys are all so awesome. You just are."


 Sue said...
Hi Julia. She should probably be seen at a pain clinic. They may be able to help her with her pain much better than her rheumatologist. Has she looked at the Spondylitis Association of America website? They have information that may be helpful to her. My mom had 2 older cousins who had this (they were brothers) and it was very rough going for them as well. I hope she finds relief.

 Kate S said...
On the hoping for a cure part... I also have a version of spondyloarthiritis, and my rheum is prescribing doxycline. Just thought I'd mention it it case that option has not been considered yet.

As for the other aspects - pain clinic, use of alternating heat and cold to manage the most painful areas. I am dear friends with my condo's hot tub!

Consider learning meditation - for some just have a small quiet time in the day helps to break the cycle of the internal conversation of how awful you are feeling, which can provide some useful changes. 

But having rattled off a bunch of helpful tips, I don't feel that I've really addressed the difficultly of dealing with daily pain. It is hard to try again the next day when the last one was so lousy. 

I think that coping is a combination of doing whatever you can to reduce the pain, and finding reasons to keep going. I have friends and family that I care about, and they bring me pleasure. I have a number of small hobbies that I find rewarding, and I try to do them when I can. They can also be a nice distraction from pain, too. And then there are days when I'm going to be quietly on the couch watch a Netflix series, because that's all I can handle. 

 annie said...
I have something called DISH(diffuse idiopathic skeletal hyperostosis) in my spine, and spinal stenosis. I also have had herniated discs and sciatica.There is pain and stiffness along my spine, lower back and shoulders. There is calcification and some bone spurs along the spine. I've had physiotherapy, seen an osteopath, and been on medication.

I can say that I go through good phases and very bad ones, just like the sjogren's, and sometimes all at the same time. As others have suggested, see doctors at your hospital's pain clinic. They can help you with meds,some form of therapy, and where I went, there was a psychologist working with chronic pain patients. Have you tried accupuncture or some other alternative health medicine as homeopathy or naturopathy, always with your MD's knowledge of course? Nothing works perfectly, but sometimes we hit a combo that works fairly well together, between meds and other therapies.Sometimes a warm bath with some lavender epsom salts can help a little because as we know there is no cure and we must live as best we can with this. God luck.

 Anonymous said...
First of all: Dont give up hope! I have had chronic pain stemming from aggressive RA, Sjogrens, and belly pain stemming from atyical Crohns, and then gastroparesis and GI motility disorders, for the past 25 yrs,,and have been on chronic pain med management for the past 20 years.

The goal is of course, to treat the underlying illnesses, so that your pain would lessen, so keep pursuing the biologics and other meds used for the AS. and of course, other complementary therapies, such as gentle exercise/PT as you are able. 

Also, treating any other issues that increase pain is important, such as insomnia from the pain, so my rheum will use sleep meds, muscle relaxants, etc, for that purpose. Also, chronic pain chemicals can deplete serotonin levels so using antidepressants is also useful, even if you are not depressed. 

If your rheum is not comfortable managing your pain meds, then a good pain management doc could help. Not just with narcotics, but using steroid injections when indicated. Also ,i had a pain doc tell me, that they even can implant a med pump directly into the spine, to deliver the narcotic. That is lastly on my list, but its a good note, to realize there are other options. 

I have used a fentanyl patch for the last 20 yrs, and also hydrocodone for breakthrough pain. Of course my body has adapted to these meds, since i have been on them so long. The patch is a good choice, because you have constant low dose release of medication, so no peaks and valleys of pain control ....

And again, please dont give up hope..as new therapies are being developed, both for our autoimmune diseases, as well as pain treatments. 

 710.9 said...
I don't have a lot in the way of suggestions. I just wanted to say that I can relate, and I am so sorry she is going through this. 

In my 20s, I developed extraordinarily painful endometriosis. I had similar thoughts: "I don't think I can handle this for 20+ more years." 

Even now, when I have a flare in pain from my connective tissue disease, I find myself thinking "this hurts so much, and I don't know how I can continue living with it."

So, no real advice, except to be kind to yourself, and know you aren't alone.

 Angana said...
My thoughts for our friend.
What I am understanding from your letter is that you are feeling hopeless, wanting lasting relief and knowing that's not likely to happen. Helpless, imagining being in constant pain for the rest of your life, and having no idea how you'll tolerate it.

If I may, I would like to expand on what Julia has written about focusing on the present moment, and Kay S' recommendation about meditation. I have found this perspective and the practice of mindfulness very helpful. I recommend the book Full Catastrophe Living, by Jon Kabbat-Zinn, and any of his audio series of lessons. He has a wonderful one hour guided relaxation CD for people confined to bed for whatever reason, called the World of Relaxation. I have found that, over time, sometimes very subtly, my experience of pain, insomnia, and anxiety have changed and my Sjogren's symptoms are much more manageable and less "solid" and insurmountable. The increased awareness and discernment have helped me notice the variations in my moment to moment experience, appreciate moments of ease and well-being, and become curious and proactive about creating more moments of well-being. If you adopt mindfulness as a regular practice for its own sake, without judging your competence during any given session, I feel confident you will find some relief.

Another modality I have found extremely insightful and beneficial is the Feldenkrais Method of movement education. I work with a physical therapist who specializes in this method of gentle movement and touch. By exploring your body's potential and limitations for pain free, easy movement, you can learn to best nurture yourself and get the most out of your day. You can search Google to learn more. This method is an excellent complement to a mindfulness practice, as well as any pain management or PT regimen you may follow.

I do hope this will be of benefit to you and wish you ease, comfort, and contentment, to the greatest extent possible.

 Kelly said...
The combined wisdom and knowledge of Julia and her readership never fail to astonish me. Previous posts have covered the major idea that I can think of that might be of use to someone struggling in this way so I will add 2 small ideas that come to mind. 

In the mindfulness category so eloquently expressed by Angana above: if you are a person who enjoys putting pen or pencil to paper in any form you might look into Zentangle by doing a Google search for the term. Recent studies have shown it to be useful for patients with chronic pain. Anything that allows the mind to focus elsewhere could provide some small benefit. 

Also, as shallow as it sounds, when I was experiencing extreme stress and mental anguish as I cared for my mother throughout her final illness, I listened to Laugh USA, the clean comedy station on Sirius XM in my car and read P.G Wodehouse novels (Jeeves and Bertie) on my Kindle in any spare moment. Somehow, it helped. I found if I was able to laugh even a little in spite of the pain, I felt marginally better. 

My heart goes out to you.

 The Cranky Native said...
Wow, I have extreme pain also. If we were in London, you could get on heroin. Here though, we have marijuana. One of the biggest reasons this is such a good drug for pain is that it makes you think about something other than killing yourself.You don't have to smoke it, it's edible.They make pills. Watch Dr. Sanjay Guptas show he just did about the subject.

I wish I would have been more of an herb person when I went through the early pain. I went for hypnotherapy which helped a lot. Meditation with direction is how I see it.

I can't stand hot tubs anymore. That used to make me feel better. I have the cheapest best acupuncturist on the planet. He's from Bastyr University, right in my backyard.

I hear you baby, you aren't alone. Look at the response you have gotten. You don't have to live this way, life can get better I promise. All you have to do is try everything. There is something that will help. God helps me a lot but He's not for everybody. 

Your problem means a lot to me. I was at a low point. I'm only 51. I read about an elderly couple in Oregon. The husband was left to explain that the woman put a bullet into her head because she couldn't stand the pain from her neck and Sjogrens Syndrome anymore. I felt so sad and angry with her after that and I didn't even know her.

Pain has been like peeling the layers away on an onion. Once one is handled there is another layer that we find and it responds to some other way, PT, different drugs, whatever. Then there is floating pain. That's what I call it when the inflammation causes things like vertigo, or my pancreatitis to act up.

Hell girl, This is an adventure in science! Please write Julia back and tell us how you are doing, the discoveries you find okay?

 Julie said...
Though I left a lengthy comment earlier,(under the name of "anonymous"), one of the other respondents jogged my memory, of how I have also sought counseling, along with my spouse, to learn how to handle the anxiety and unknown that chronic AI disease brings. 

It began in my early 20s, with symptoms of Crohns, and then endometrosis, with the party of RA and Sjogrens gradually being added in. And one activity that really helped, along with the avenues, such as medication and activity as tolerated, was journaling.

This is just meant for you, and there was something so helpful about writing out my feelings, whether despair, frustration, worries, or even prayers to God, it had a helpful effect. I am sure blogging when also come under this type of help, but I just wrote for my own eyes. 

Also, another activity that is helpful, is for me to also write down blessings whether that means that I am thankful I was able to walk to the bathroom alone without a cane, or being thankful for Julia, our stalward Sjoggie leader, there is usually something that can be identified, to write down. 

Of course, some days are just too dark, to write much if anything. Being kind and forgiving to yourself, when these times come around, is the best one can do. 

Also,, try and avoid the guilt game. I don't think you mentioned that, so I am speaking of my own experience, that I have had to come to terms and grieve, for the person I once was, and accept changes, though it is a process. We are grieving our former selves. 

Ok, I have written a whole book, betw my 2 posts, but one thing that I have always wanted, is that in my 25-30 years of having these chronic diseases, is that maybe I can offer a hand up, to a fellow sufferer. 

Also, maybe it would help to join a specific AS online support group if you dont already. I have a Facebook friend with AS, and I am sure she would know of some groups, if you would like me to inquire. 

You are NOT alone and you WILL be able to find a way to cope with the chronic pain.

 ShEiLa said...
My experience with my first Pain Center... Total failure.
But if at first you don't succeed.... Try try again.

I think it is time for me to give it another try.

I feel the sort of desperation that this lady shared... Dealing with chronic pain is discouraging and downright depressing. Hang in there! Good luck!

 Bubble Girl:Navigating the world in a bubble said...
Hi I am 40 and have Sjogrens, fibromyalgia and 15+ life threatening food allergies. Because of this I have suffered anxiety also. I literally have tonlice in the moment. I try not to think too far ahead. Although somedays its tough and I break down. I have husband, kids and a new grandson also! I worry I wont be around but then I have to remember to enjoy now. Then I can look back saying, I enjoyed all I could while I could No regrets.
For the pain, I have never been a person who takes pills willingly. Except my Plaquenil to keep the disease from getting worse and food allergies from getting worse. I do use the medical green every once in a while but not often because I still work. I have never been a "smoker". But I had to get past that to get some pain relief and it does work. Mainly like was said previously, it takes your mind off of it. You can use edibles , I cant because of my food allergies or you could use a vaporizer. I realize this option isnt for everyone. I just had no choice with my allergies it really limits what drugs I can take or if they can be compounded. Which sometimes leaves me with just tylenol to control pain.
I also see a massage therapist who does light touch. That helps relieve any stress I may feel from constant pain and stress of working too... Which causes my pain.... Vicious cycle. 
Also meditation/ prayer has worked for me. I try to do this every night before sleep. 
I am also always reading... A book or something. It really helps me concentrate on something that is if Im not too tired to read.
I am sorry you are in so much pain. I hope you find some relief.

 c little said...
You guys are all so awesome. You just are.

Ohhhh I don't have the pain you deal with on a daily basis, yet. Of course, I have a short memory and it's warm and sunny out, so talk to me again when it starts raining. 

I do understand your fear of the future, and agree wholeheartedly with the one-day-at-a-time approach as well as prayer. I find I am helped a great deal in my own journey when I reach out to help others as best as I can, even it's just by calling with some encouragement. Pain and depression are so consuming that it is easy to become self-centered and hard, which becomes it's own loathsome cycle.

Brain fog is one of the things I find most shattering. I try very hard to keep my brain active, even though I don't always remember all of it. I write more notes. A lot more notes. Sometimes I lose them, sometimes not, but basically I'm the sticky note queen

I also try to watch uplifting things. Happy endings. Comedies. I don't hide from bad news, and I do love my cop shows, but I won't engage in endless tragedy, like lifetime channel. Your body can't differentiate what is really happening with what your mind is processing, and negativity adds up.

And as everyone else said, you're not alone.

Claire said....
She mentions morphine but does not mention antiinflammatory meds she is taking.  I am wondering if she is taking indocin, the first drug of choice for AS.  Prednisone?  Methotrexate?  Plaquenil? Other NSAIDs?  I take 5 mg of extended release morhpine (Opana ER) every 12 hours and have been on the same dose for about 6 years.  I also take short acting pain meds, but I cannot increase my dose because I have adrenal insufficiency and cannot tolerate higher doses - i.e., they overwhelm me and make me sleepy.  I too would be worried about maxing out on morphine, and the possibility of it making me unable to function.  There are lots of NSAIDs, and I know they can be very hard to take.  For example, FLECTOR patches (diclofenac).  This same drug comes in a gel (voltaren gel).  I can use these sparingly and they work incredibly well. Indocin works for many people with AS but of course once it gets to your stomach, that's the end, you cannot take it anymore.  I wonder she did not mention any other meds she is taking which could make her need for morphine less.  For those of us with similar pain issues caused by inflammatory diseases, opiates are actually LESS effective than NSAIDs can be, if they are strong enough and don't kill your stomach or have other undesirable interactions with your other meds. Controlling the inflammation is ultimately much more helpful than trying to control the pain, in my experience.

Anonymous said...
Just wanted to echo what some of the others have said about trying some different approaches. I'm not sure what all you have tried, but I have a friend with this and her Rheumy started her on an injectable form of Simponi. So far, she is having great results with her pain levels. Please, keep asking, keep searching and keep trying. We are not defined by our diseases. Big hugs to you.

Jan said...

You guys rock! Always with so much help, info, and compassion!

I too have chronic pain from neck injuries, disc degeneration, bone spurs on the spine, Sjogren's, Fibromyalgia, and too much more to mention. I have used prescription Lidoderm patches, which help quite a bit. I've also used several pain meds (along with all the Sjogren's meds, etc), had physical therapy, etc, etc. 

One of my docs decided to try me on Cymbalta, for both depression, and pain. He's concerned too, as it affects the liver, and I already have liver disease, but we're trying it.

I have to say, I haven't noticed anything as far as the 'happy pill', but I have noticed that the pain in my neck, shoulders, and back seems much improved! I have to assume it's the Cymbalta, since that's the only thing different in the last 2 months.

That may not be the answer for you, but as others have said, just keep trying. There will be something, some combination, out there that will help. I understand, I've become so frustrated sometimes, I just wanted to give up.

I am 61, and have also decided that who knows what lies ahead? My diseases are slowly progressing, attacking different organs. But while I still can, I'm having fun! I bought a used kayak (I live in Florida), and enjoy paddling around (for a short while) when I feel up to it. I also bought a used 97 motorcycle, with a sidecar! I am having a blast!! I'm on SSD, so have to save for goals, and be careful financially, but decided this is MY TIME! 

I have to pace myself (still have a hard time doing that), and I find I need naps more often, but what the heck. 

Try to stay in the present, keep finding different things to try, and live life as fully as you can! Believe me, I know how hard it is sometimes, but doing positive and fun things really does help!

Best of luck to you!

Anonymous said...

Thank you all... this is me, the one with the question. All of this is very helpful. Actually just knowing that there are people out there who understand is very helpful.

I'm learning, and one of the things I'm learning about is the grieving process. I had a happy joyful body and now it barely moves. I am sad about that. Angry too.

I'm on Lamictal to help with the pain, and Cymbalta to help with my state of mind. I can't take any form of nsaid's as my stomach decided long ago that they would tear it apart. I do have a pain specialist, but he's impossible to see. I'm just jumping through any and every hoop I can to get any improvement. (Aren't we all?) I've had infusions and Enbrel and now I'm on Humira. It's not helping, but never say die, right? I have nasty side effects from prednisone so I only take it during a bad flare.

Warm baths are amazing... I don't have the attention span to journal anymore. I used to. I also used to be a 3-5 book a week person, but now I'm happy with a quarter of a book. Finishing one gives me a great feeling of accomplishment now.

You said a lot about taking things one day or even one minute at a time. That's it. I am working very very hard to make that a part of myself all of the time. Gratitude for what I CAN do. Today my friend whom I ran into told me to "take it one day at a time." OK. I can do this.

I also made the decision today that instead of keeping it "under wraps" that I would come out of the closet so to speak. Today was a good day so I went out to our local gathering hole and started talking about it. This was AFTER peoples exclamations of surprise that I was out! "Where have you been for like the last year?" I told a few, and it being a small town it will get around. It felt very awkward but it was a small step to my new normal.

I have to accept my new normal and realize that every day will be a new normal.

I say that very easily, but it's not that easy, is it?

Yeah I'm sad.

Thank you all! I needed the advice and encouragement. Me.



If you would like to join this conversation, please feel free to add to the comments below.

I'm ready for my closeup, Mr. DeMille.

Lots of people have been asking me about my new picture: the cartoon-y pencil sketch that is now on my blog sidebar and my facebook page: "Who drew that?"

I suppose I should admit that it was drawn by the artist formerly known as Julia.

Which should really prompt the bigger question: "Why on earth would you want to sketch yourself?"

Um. I dunno. I guess I've never liked looking at a photo of myself, but let's not talk about that. I really don't want to get into a deep psyche-searching discussion today...... there isn't enough coffee in all of the Starbucks in the whole world to get me in the mood for that. And then I'd have to explain BICJ's existence.  Yikes.  No. Way.

So the alternative to a photo of myself on my blog and facebook stuff limited me to a few other image choices: could be Lulu....hm. Been there done that... Or an object that represented me somehow. (I have no clue whatsoever what that would be.)

A few years ago, it occurred to me that a caricature type of drawing might be fun and I talked to my artist daughter #1 about that. She hemmed and hawed about my request and I knew something about this project bothered her.

What's the PROBLEM, Missy? Just draw the thing.

"Mom. It's not that easy."

Wait a minute. Isn't that what all those years of tuition were for? Yeah, yeah.....fine. We were happy to invest in an education that would prepare you to pursue your passions....blah blah blah. But beyond that, my real motivation for sending you to earn that bachelor of arts degree was so that when I wanted a picture, I could ask YOU to draw me a picture. Simple. Remember pencil sketching 101, for pete's sake?

She sighed. "OK, Mom. I'll try."

After two years the sketch still hadn't materialized, so we had the conversation again. And this time, D#1 told me the truth:

"Mom. I really dislike doing portraits of any kind. Most people have this mental image of themselves and if the artist can't bring that image to reality on paper, then they're not happy."

Wait. Are you saying that I'm too weirdo to draw?

"MOTHER. Be serious here. If I draw you the way I see you, I'm afraid it really won't be the image that you're looking for. I just don't want to disappoint you, that's all."

I'm too weirdo to draw. I knew it.

So I let the issue drop until a few days ago, when I impulsively grabbed a spiral notebook and a chewed up pencil and began to sketch. D#1 was right, by the way. There could be a reason that people actually take classes to learn how to do this stuff. I took a phone picture of myself to give me something to copy. Hoo, boy.

(No. I'm not going to post the picture. That would defeat the whole purpose of the thing here, people. Tsk.)

So I labored over the stupid thing and realized that even I didn't know what my "mental image of myself" was, to quote D#1.

I TOLD you that my hair was still way too short. 

Ew. Maybe if I do an artsy-fartsy crop and tilt thing.....

Ew. Still.

I thought more carefully about what I would like in a sketch, and realized that I actually didn't want a picture that really looked like me, because I didn't LIKE pictures that look like me. So I decided to draw myself as I would want to be seen. Kind of like doing a Julia face photoshop experience. Brilliant.

I really dislike my nose so I just eliminated it. Easy. And while I was ignoring major facial features, I decided to make my nasolabial folds just go away too. Heck, I thought. As long as I'm dreaming, I'm only going to draw myself with ONE chin.

Woo hoo! I realized once I abandoned any pretense of making this thing an accurate representation of my face, that this project could be quite entertaining.

Hm. What else would I change if I could....

Ah. As long as I was doing chin modifications, how about making it much smaller? And curls that don't look dopey! Wrinkles? What wrinkles? And LIPS! Hey, I think I'll give myself some lips!

I started seriously talking to myself. Out loud.

Wait. Not big and glamorous lips. ..::erase erase erase::.. I think I want this thing to have at least a faint resemblance to my actual self. I suppose I should give myself enlarged dumb stupid parotids. Sjoggies would understand that.

Hm. Better. Hair too short. Face all chubby/prednisony/parotid-y. But still kind of friendly looking.

I took a picture of the sketch and did a little cropping and lightening and contrasting and .....

So. Here I am. Or more accurately, here's what I would like to be:

I think this piece really captures the essence of my cluelessness. It's all in the eyes. 

What? You didn't expect a book-length answer to a simple question like, "Who drew it?"

Serious Pain

Guys. We need to rally around this sjoggie. She's been dealt a really lousy autoimmune hand of cards being diagnosed with both ankylosing spondyloarthritis AND Sjogren's syndrome. In spite of really good rheumatology care, she's struggling with the concept that her pain levels and brain fog will potentially become unmanageable. Here's her question to the Reasonably Well community:

I have Ankylosing Spondyloarthritis as well as Sjogren's. The pain and the brain fog are overwhelming. I'm working hard with my rheumatologist to find anything that will help, I'm also on 15 mg. of Morphine 2X a day. 

Here's the question... eventually I will be topped out on the morphine I can take. Hoping to find something to stop the progression of both. I'm 52 years old. 

How can I do this for 30 more years? Assuming I live a normal lifespan. I don't see how I can do it. So you have any ideas, anybody out there with any ideas? I would love too hear what anyone else has to say, any ideas, thoughts.

I have a purpose, family, friends, children, and a new grand baby.

Thank you so much. I try to show people the "Spoon Theory" if helps, but it doesn't address crippling pain. I'm also starting to as address the issue of "but you don't look sick" with my friends as well. 

But I know I can't endure this for 30 years.

Help? Ideas?

My small piece of advice would be this: Take it one day at a time. ONE day. Or if things get really difficult, get through one hour at a time. Do whatever you have to do in the actual moment to get you through that moment. If I allow myself to think too far ahead in my future, I feel pretty discouraged sometimes, too. But I don't have a crystal ball that will tell me what I will be facing in thirty years. There's no doubt that anxiety about the future is a realistic concern -- but I try to minimize the time I allow myself to dwell on it.

Also -- are you being followed by a chronic pain clinic? I know: what we all want is a cure for the underlying disease. I'm hoping against hope that will be a reality for us all, and soon. But in the meantime, I'm wondering if specialists that work with chronic pain patients may be able to manage your pain better and get you down from that 10 pain assessment range while working with your rheumatologist, of course.

So chime in here, people. Help? Ideas? Anyone else struggling with similar issues?

Have I Got a Deal for You, Lady...

You can buy your very own custom made orthotics with metatarsal pad here. 

After my recent trip to the podiatrist and having been diagnosed with bunions, hammer toe, and metatarsalgia for cryin' out loud, I realized that I have become very weird.

Well. More weird than usual.

Weird because I have started to hang around the foot care sections of department stores. Weird because I have spent a great deal of time looking online for bunion pads, hammertoe splints, metatarsal socks and pads and inserts. Weird because....

Weird because even my private musings have begun to center on my dumb stupid foot pain. We were doing some errands on Sunday and I was thinking about how expensive all this stuff is. I mean, I've dropped a bundle of cash on all this foot junk er, helpful health and beauty care items. I started to snicker and John looked over at me. "OK. What's so funny this time?"

I felt comfortable discussing my weirdo thoughts with him since unbelievably he has hung around with me for almost 35 years. There's no one out there except John who understands the breadth and depth of my weirdo-ness.

I was thinking that since all these podiatry related products are so expensive that I'll bet there's a black market for them somewhere.

John hopped right into Julia-land. Without hesitation. What a guy. "Yeah. Like maybe a shady looking character standing on a corner wearing a big black trench coat with all these pockets on the inside."

Right. And I'd walk by and he's sidle over to me and say something like, "Pssst. Hey lady. Yeah. You with the hammertoe and bunions and metatarsalgia."

John laughed.

And I'd say, Who. Me? And his eyes would get all shifty. And then he's say, "Yeah. I'm talkin' to you. Get a load of this." And he's glance around to make sure that a cop wasn't in eyeshot. He'd whisper, "I got the latest authentic Dr. Scholls stuff right here, lady. For a fraction of retail."

He'd let his coat open just a teensy bit, just enough to show the pockets inside crammed with moleskin pads and arch supports and brightly colored shoe inserts.

John said, "Exactly! And he'd have a friend of a friend that could hook you up with some really high-end custom orthotics but only for cash and if you let him measure your foot in a dark alley somewhere."

 AND he and his pals would run this joint where you came to the door and someone on the other side would open a peep hole and ask for the secret password. And if you got inside, you could buy orthopedic shoes that were probably hot. But nobody would know they were stolen goods because shoes don't have VIN numbers like cars do. Cash on the barrel, and they'd get wrapped up in plain brown paper. And you'd disappear into the dark night with your package tucked under your arm....

We both laughed until we snorted. Ah, yes.

Oh, brother. I think I really, really need to get a life, people. A bunion-free one.

When is it Time To Wear the Bracelet?

Kristen, authoress of Sjoggie StAHMer, brought up a really good topic the other day: Should sjoggies wear medical identification bracelets?

Do Sjogren's patients need medical id bracelets?  This was a question posted on one of my Sjogren's Syndrome support groups.      I had not previously put much thought into this. I really only ever linked the thought of id bracelets to diseases like asthma, diabetes, allergies, or for geriatric needs. The more I thought about this, though, the more relevant I think this subject might be for me. Continue reading here. 

Check out her blog for the entire post which includes links to some really good-looking bracelets.

I've been wearing my MedicAlert bracelet for about five years now. I used to feel self conscious about it but now I don't give it a second thought. It's silver and is pretty tough but does look as though it's been on my wrist for about five years. Time to get out the silver polish again, methinks.

I decided to get THE BRACELET after I realized that I was probably going to be on prednisone in some dosage or form for a long time. So now if I arrive in an emergency room somewhere and am unable to give the details myself, the staff can call the number on the back of my bracelet and get vital information about my medications and health problems.

Do you wear one?

Breaking My Breakfast Habits

Do NOT eat this, found here, for a healthy start to your day. 

I gritted my teeth and stepped on the scale this morning. With my eyes open, even.

Yowsers.

I could tell that things were, um....well, let's just say that I suspected that my BMI had increased considerably since April and that whatever-it-was-that-took-me-out-at-the-knees incident. And I was right. Hoo, boy. I'm the type of person for whom the term "comfort food" was invented, and I have definitely been comforting myself during this rather uncomfortable spring and summer.

Oh, yeah. I've been comforting myself like crazy with stuff like lemon meringue pie or chocolate frozen custard. Mmmmm. The treats seem so delightful going down and while I blissfully pat my tummy afterwards, but after two or three months worth of indulgence, it's easier to pat my tummy since there's lots more of it. Rats.

I think my treat-seeking behaviors begin as soon as I open my eyes in the morning, because mornings are HARD.

I don't need to tell y'all that. You know how it is.

But as I hobble my way to the kitchen in the morning trying not to actually use my FEET to walk (now there's an interesting maneuver) because they're as crabby as the rest of me, my day right from the get-go finds me needing to comfort myself with breakfast.

Truth be told, I'd just as soon slug down some juice with my pills and call it a meal, but having tried that more times than I care to recall and having dealt with the effects of pills on an empty stomach I have learned my lesson. If I want to take my pills (and I really don't but that's another topic entirely) without feeling barfy, then I have to just eat some breakfast.

And, because just getting dressed and moving this old body of mine down a flight of stairs takes enough energy that my brain shuts down, I grab whatever is easy and --- all together, now: comforting.

WAH WAH WAH.

I don't even want to begin to discuss my comforting habits for the rest of the day. But I'm thinking that if I could just start myself out with a tasty and healthy breakfast, things could only get better in the BMI department, don't y'all think?

So. There's the question, finally, after all these paragraphs of grumbling: What kinds of breakfast foods are 1) comforting, 2) healthy, 3) so easy to prepare that I can successfully get the food to my mouth even when I'm living in a total Julia la-la-land, and 4) don't include items that can be purchased at a Krispy Kreme doughnut shop?

I suppose I should also discourage the inclusion of home made banana buttermilk cake with cream cheese icing in my healthy breakfast foods list.

What are your favorite healthy, anti-inflammatory, and easy to make breakfast foods?

Curious Curls

As my hair sloooowwwwwllllyyyy grows back from my recent trim-that-was-actually-a-scalping, I've noticed something surprising.

My hair is untouched by a curling iron or blow-dryer. I swear. 

My hair is growing back curly. Was it always this curly? I don't think so. Wavy, maybe. But not boingy-curly. Interesting. Wonder if the cause was one of my drugs? Or my age? Or just because I'm inherently a weirdo?

Settling Accounts

It never fails to amaze.

The dumb stupid fatigue from this disease, that is. I'm amazed at the ridiculously high price that it demands of me for what others consider simple everyday events; like taking a long weekend to visit family for example. This shouldn't be so surprising but still after all these years, I still marvel.

We left last Thursday and returned on Monday, during which time I propped up my energy levels with frequent rest and consistent use of Provigil. Love that Provigil, although each time that I rely on it's boost I have to keep reminding myself that the energy it seems to create is fake; and that I'll have to redouble my efforts to rest after it's use.

And how. The fee for getting through five days of family gatherings and travel seems exorbitantly high: a minimum of another five days of living a brainless, boring, sweating-at-the-smallest-activity existence.

Yesterday my doctor's appointment was the one reprieve from mandatory couch time. Today I'm still paying the price, although I think the extortion fee just dropped a little since I was able to push the vacuum around a few rooms of our house, which means that the worst is over and better days are ahead. Exciting, that. Vacuuming. Woo hoo.

Lulu doesn't mind my resting days one bit as long as I keep scratching her ears and belly.

"Put down the camera and resume the scratching. Stat." 

Lulu reminds me that things could be much worse: I could be reduced to the lot of a schnauzer who lives at the mercy of her owners' willingness to dole out belly rubs, walkies, and doggy treats. Ah, yes. Her life is really rough. She's right. 

Does This Chair Come in Leather?

I hate having cranky feet. Having cranky feet makes for one very very cranky Julia.

So I went to see my podiatrist today. The medical assistant escorted me to the exam room and as the door opened, I looked at the exam chair with awe.

It was stupendous. My phone camera doesn't do this baby justice.

There should have been heavenly choirs singing or something as I settled myself in.

Have you ever SEEN one this cushy and comfy before? Ahhh. I told the assistant that he could reschedule my appointment for about two hours later. While I took a little nap. And he could bring me a mango margarita and a few chips on his way out. K. Thnks. Bye!

He laughed and shook his head. The margarita and snacks didn't arrive and the dr. showed up right on time. Drat.

Turns out I have very boring run of the mill old lady feet complete with bunion, a hammer toe, and as my family doctor had suspected, metatarsalgia.

Which also means that I will have to head over to get some custom shoe inserts made.

Bunions? AND cataracts?

I feel old.

Good Advice

Thanks to Katherine for sending me the link to this post from Rheumatoid Arthritis Guy. It was written back in 2011 but certainly continues to be relevant for those of us dealing with chronic disease. Here's the first few paragraphs, but head over to his site to read the post in it's entirety. It's excellent.

10 Things I’ve Learned From Living With Chronic Illness

1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.

2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didn’t lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again.

- Continue reading here.

Sue Was Right

The image that I posted yesterday and challenged y'all to identify is a pottery studio: a wonderful little place tucked away from any major city or roads. We discovered this artist many years ago in our midwest wanderings and made certain to find him yet again during this trip.

John Thomas has been a potter for all of his adult life, and his experience in his art is definitely visible in his creations. You can read more about Dunn County Pottery on his website, here. Image above and this information is from his site:

John Thomas established Dunn County Pottery in 1973.  An apprenticeship in central Japan gave him direction for a lifetime of work. John invites you to enjoy the colors and textures of these pots and use them in your daily lives.
     “As a potter, the greatest joy I feel is making pots intended for daily use.  I work with local clays, glazed and fired in a wood or gas kiln for a warm and varied effect.  The forms are traditional and are influenced by nature.”
     The pots are wheel thrown using a mixture of clays from Ohio, Tennessee, Missouri, and the local area. After glazing with clay slips and glazes, the pots are fired in an electric, gas, or wood kiln. John’s favorite pots come from the wood kiln. Wood ash from the fires and rhythmic fluctuation of oxygen content in the kiln combine to paint, or flash the surface of the pots in unpredictable patterns. During the 20 – 32 hours of firing, the pots are showered in ash, resulting in a myriad of colors and textures. No two are alike.
     All glazes are lead-free. The pottery is safe in the dishwasher. It does well in a conventional or microwave oven as long as the pots and the food are room temperature before putting them in the oven. With careful handling, this pottery will last for years.

We dropped by on a whim as we made our way back to the airport to head home and found the potter in his studio.  He chatted casually with us as we tried to choose from his beautiful things.

Here my John gets a peek into potter John's building housing his wood kiln.

We finally picked these.

What fun.

I love using things that are hand crafted. I like the idea of a skilled craftsman carefully shaping the beautiful mug that holds my morning coffee.

Be it ever so humble....

....there's no place like home.

Catching up on my sleep. In the meantime, guess what this fabulous place is? I'll tell y'all all about it tomorrow.

It's all Gone

Yep. I think I've used up every last little drop of energy in this old body of mine. I kind of feel the way one of Dad's old barns looks. It went down last winter in a blizzard; luckily no animals or equipment inside were hurt. But it certainly is one broken-down building.

So am I. Ah, but the opportunity to connect with family yet again is worth it. Unbelievably, the foundation is still intact so all Dad's barn needs is some new rafters and a roof.

I wish I was that easy to fix! But a few days of serious rest will go along way...

See y'all tomorrow.

Let the Pictures Do the Talking

........because my brain certainly isn't capable of producing coherent thoughts. See y'all tomorrow.

The 'Hood

Yep. I grew up in a pretty rough neighborhood, all right.