Tuesday, February 2, 2016

Hello Again

I am sitting next to Mom's hospital bed listening to her being evaluated by a rehab therapist and it is breaking my heart. She is trying so hard! Unlike her pre stroke self, she is struggling as staff attempt to define the areas of her brain affected by her stroke.

Her inability to remember Dad's death causes her piercing grief every time that she is reminded. Gently reminded, but there is simply no way to deliver that kind of information without causing her to feel a fresh wave of pain. We don't bring up the topic, but she will ask, "How is Dad?" and we tell her the truth.

It's cruelly ironic that this should be evident on Groundhogs Day. Remember the movie by the same name in which the main character lives the same day over and over and over?

I have four siblings, all of which are here. We take turns to ensure that one of us is by her side for her waking hours. Although we can't bring Dad back, we can envelop her with our support and love.

We are bracing for a blizzard here in Wisconsin, and after buying myself a pair of snow boots and an enormous scarf, I think I'm ready. I think I will ride out the storm here at the hospital where Mom and I can watch it all from her sixth floor room which has an enormous window.

I am sorry that I have neglected my blog, but I am certain that y'all understand.

Now go hug your Mom should you be so lucky to have one nearby.

Wednesday, January 27, 2016

From Bad to Worse

Well, guys, if you pray, I would appreciate a few sent in my Mom's direction. Early in the wee hours today, Mom suffered a major stroke, further compounding her cardiac issues and her prognosis in general. And so my siblings and I had to change the focus of our discussion from discharge planning to obtaining a do not resecutate order.

I am praying for comfort and healing for her, but if that isn't possible, that her reuniting with Dad in the afterlife is painless and soon.

Monday, January 25, 2016

I Have a Quest

iPhone wallpaper found here. Mom needs this on her phone. 

Wednesday I will be packing my bags and boarding an airplane yet again; this trip as unexpected as my last. My mom, a teensy little 82 year old, has been running herself ragged since my dad's funeral. She's a breast cancer survivor, has early Parkinson's disease, Graves disease, is hypertensive, and had a five graft heart bypass surgery in the past, yet until this week looked remarkably healthy.

I suspected that Mom has not been taking good care of herself lately, and that's understandable given the circumstances and the huge list of things to take care of since Dad's passing. But she wore herself down, got this year's brand of influenza, and put herself right into the hospital with dehydration and atrial fibrillation. So I'm heading over to hang out with her for a week or so just to make sure that when she is discharged, she behaves herself.

Making my mother do anything she doesn't want to do? This will be a formidable task. Wish me luck.

Friday, January 22, 2016

Reassessment

I have been avoiding most dairy products for almost two years. And for this farm girl, it's been a real challenge especially since it seems that lactose isn't the problem for me; products such as Lactaid don't help at all. I'm OK with butter, and little bits that go in to cooking things, but to eat ice cream? Or drink a glass of milk straight up?

Wouldn't be prudent.

But I keep thinking about what I had read on a few forums -- that for some people, giving their gut a rest from foods that they don't tolerate (not to be confused with food that cause an allergic reaction -- I'm just intolerant) after a period of time they can successfully reintroduce that food gradually back into their diet. So last week I was tempted to try some cream cheese, which I did. Spread with jam on a warm toasted bagel....mmmm. And buoyed by my successful tolerance, Thursday night I decided to aggressively step over the dairy line in the sand by gobbling up cheesy bread and marinara sauce. It wasn't something that I just happened to encounter, but rather was ordered specifically from a pizza joint. And it was delicious.

Even though this was amazingly tasty, now just looking at all that cheese makes me queasy. Image found here

Y'all know what's coming next, don't you? Of course you do.

Yes. a 12 hour dairy disaster.

Drat.

So I'm guessing that: A) Eating half of a good sized pan of cheesy bread did not qualify as a gradual dairy dietary reintroduction.

Or: B) That eating dairy in large quantities is just not going to be a good thing for my innards.

Bummer. I was thinking of moving on to REAL ice cream next.........guess not.

Monday, January 18, 2016

There's got to be a way to do this.

We were heading down the hill towards church on Sunday and had only gone a few blocks when I knew that there was zero chance that I would last all the way through the service. I was already drenched in sweat and hadn't even walked through the front door. So I told John to turn around and drop me off at home, and then he could zip down to Mass.

At least one of us would make it.

After returning home and settling myself into my recliner, and allowing myself a brief mental tantrum, my thoughts turned to problem solving mode. Because there simply must be a way to avoid my Sunday morning crash and burn episodes, I reasoned.

I was perplexed as to why SUNDAYS? Why church? There were lots of other events that I can get myself to on other days of the week with a measure of success -- like medical appointments. Blech. This seemed so illogical that I could muster up energy to be poked, prodded, prescribed more pills and pay big bucks in a doctor's office, but my reserves seemed to evaporate when going to see my friends to pray and sing together in a spirituality joyful and uplifting hour.

Crazy.

I wonder if the reason that Sunday mornings are so hard is because we usually try to do some fun things on Friday evenings and during the day on Saturdays. Guess it only makes sense that by Sunday I'd be dragging. And while the other weekend events are sweatshirt/jeans/no makeup type events, I usually try to spiff up just a little bit for church. Sometimes I even shower. And of course all of that takes energy which I've already spent earlier. So the logical solution would be to cut back on other activities on Friday and Saturday.

But the thing is, I WANT TO DO ALL  OF THE FUN STUFF ON ALL OF THE DAYS.

Wah. Wah wah wah.

After John came home I asked him if he thought anyone would notice if I attended Mass in my jammies. Because I could get out of bed, brush my teeth, run a comb through my hair, and then just GO. Simple and requiring a minimum of energy, right? John just humored me by laughing skeptically.

Maybe I should modify a strategy that I used in college: if my friends and I wanted to go out on the town on the night before we needed to be up extra early for our classes spent on the hospital units the next day, after our carousing when I returned to the dorm in the wee hours, I would put on everything that went under my student nurse uniform: my white pantyhose, a slip, and a bra, and hop into bed for a few hours sleep. Then when my alarm clock went off all I had to do was throw my white uniform on over the top of everything, lace up my shoes, plop my nursing cap on my head and I was off.

Oh my gosh. I used to wear this exact model of shoe for years and years. Found on eBay, here

Wonder what I would look like rolling into church next Sunday if I slept in dress pants and a sweater on Saturday night? Then after getting out of bed, all I'd need is my shoes and a comb through my hair.

I may have to experiment. I'll keep y'all posted.

Saturday, January 16, 2016

Being a Newbie is Hard

I'm sorry that it took me so long to respond to Sjogren's Newbie's questions after I was asked a few times. My excuse for being so delinquent in my answer is.....um.....that....um......I HAD TOTAL KNEE REPLACEMENT SURGERY. Wah! Wah wah!

What?

You say that my surgery was over a month ago and that I should just get over myself?

Busted. It's true. See how AWESOME my knee scar looks?


Her questions are difficult ones to answer. Perhaps that's the real reason that I've not attempted to answer them before today. I'll give it a shot but please chime in if you have additional information:

Sjogrens Newbie said...
Any thoughts on a tie between auto immune diseases and birth control pills? Or the possibility of getting Sjogrens after changing birth control pills? 
Also any tips for someone with Sjogrens who because of their anxiety can not sleep. I'm struggling. How can I get the amount of sleep/rest someone with an auto immune disease requires if my anxiety won't let me nod off. It's like my body is afraid that if I fall asleep I'll die - so it wakes me up with a fright every time I get close to drifting off. Dr has put me on Zoloft but I've only been on it for a few days so far. What do I do?

Regarding Sjogren's and birth control pills? 

Here's the long answer: 

Relationship between hormones and autoimmune disease is complex and like almost everything related to causative factors in Sjogren's syndrome, needs more study. Most researchers agree that sex hormones affect our immune system but there is much more to be learned. The different sex hormones each have demonstrably different effects on autoimmune cells, read this and this.

I couldn't find much recent information that looked at the use of birth control pills and Sjogren's specifically, however I could for a few other autoimmune diseases. For Lupus patients, recent studies seem to be conflicting with older ones, specifically those that study the effects of OCs and flares of Lupus (another autoimmune disease) activity. It was previously thought that Lupus patients should never be prescribed oral contraceptives to avoid increased autoimmune disease activity, more recently after new studies were reviewed, stable Lupus patients who meet certain strict criteria may use OC safely according to Michelle Petri, MD, a rheumatologist at Johns Hopkins University School of Medicine in Baltimore, Maryland and Jill P. Buyon, MD, a rheumatologist at the New York Hospital for Joint Diseases in New York City.

There is some evidence that the use of oral contraceptives and menopausal hormone therapy may increase the risk of inflammatory bowel diseases such as ulcerative colitis and Crohn's disease. Read this. 

Here's the short answer:

Maybe. Maybe not.  More research is needed. Yes. This is a very unsatisfying answer, I would agree.

Regarding anxiety and sleep and Sjogren's?

A recent diagnosis of Sjogren's syndrome can indeed cause sleep reducing anxiety. I recall many sleepless nights early on after I learned of my autoimmune disease. But take heart and take time to breathe. Just breathe. You and your doctor will find your way through this. It appears that you must have confided in your doctor regarding your anxiety since she/he prescribed Zoloft (sertraline hcl) for you. This information about Zoloft was found on WebMD:
This medication may improve your mood, sleep, appetite, and energy level and may help restore your interest in daily living. It may decrease fear, anxiety, unwanted thoughts, and the number of panic attacks. (Bolding mine)
While the effects of this medication can be very helpful, one needs to have some patience after beginning to take it since it may take from two to six weeks before you may feel it's effects. So hang in there. And be sure to remain in contact with your physician if you feel as though this medication isn't right for you.

In the meantime, please know that you're not alone. Visit Sjogren's World Forums to post your questions and connect with hundreds of other folks dealing with Sjogren's. It's a great way to find support and answers. My user name there is Annj5, so if you see me, say hi!

When you read Reasonably Well from a non-mobile device, you will see a left sidebar that has links to many other resources for Sjogren's patients. Take a look.

Hugs.

Wednesday, January 13, 2016

Walk This Way

John and I were running a few errands yesterday when I noted with a great deal of satisfaction that I was walking with considerably less pain these days. But I also have noticed that the mechanics of putting one foot in front of each other just feels different. I have great range of motion and can bear weight on my new knee, but I feel clumsy and unsure where to put the foot on my operative side. If I stroll along and pay little attention to my stride, I find that I feel most comfortable placing my feet close together with my right foot turned outward a bit.

I'm thinking that this is not a very stable way to walk. I'll bet it would be really easy to tip over from such a narrow stance.


So I've been trying to concentrate on placing my feet a bit further apart as I walk and to try to square my pelvis straight ahead and to distribute my weight evenly between my two legs.


I'm going to make a point of talking to my physical therapists about this over the next few weeks of therapy.

I decided that I couldn't wait until Friday for answers to questions such as, "Why am I walking strangely since my surgery?" I Googled madly using "gait changes after unilateral total knee arthroplasty" in the search box and realized that I wasn't as special or unusual as I had thought in that this is a common situation post total knee replacement. Go ahead - try searching on this yourself. You'll bring up hundreds of studies and documents. Whew.

Lulu thinks that any time I stick a foot out it means that she gets her hinder scratched. Which could be a significant hazard to safe walking, come to think about it. She lurks on the sofa all snuggly in my new favorite throw, then leaps out and places her little self strategically whenever anyone's shoe is approximately Schnauzer butt height in the general vicinity. What a dog.




And she gets cranky if the scratcher doesn't keep the scratching up for a lengthy period of time.

Aw, heck. maybe I should quit thinking about the whole thing and just follow The Bangle's suggestion. Can YOU walk like an Egyptian?

Tuesday, January 12, 2016

We're Super

In looking back at my posts over the last few months I realized that I forgot to put up any pictures of the awesome Christmas presents that I received, the majority of which were donations to an assortment of charitable organizations. Thank you, guys.

One of Lulu's gifts and one of mine coordinated. They transformed us both into a version of Wonder Woman, the super heroine. How cool is that? Personally, I think that Lulu rocked her costume far better than I did.



Wait. Lulu got a tiara? I didn't get a tiara!

Sunday, January 10, 2016

Frozen Percussion

Is it cold where you are today? Bet it was chilly for these folks as they figured out how to "play" a wonderful percussive piece on a LAKE.

Enjoy.



Found on the awesome The Kid Should See This.

Thursday, January 7, 2016

Footloose

Well. What a red-banner day. It's been exactly one month since my surgery and today I broke out the car keys, loaded Lulu up into the SUV and pushed OPEN on the garage door opener.

Oh, yeah. The dangerous driving duo of Julia and Lulu are on the road again.



Lulu told me that she expects her seat heater turned on and the usual drive- through french fry experience.

Ahhhh. Felt insanely good to just turn the key and go.

And for those who are wondering, I didn't have any pain medication chasing through these old veins, my knee felt just fine and my reflexes seemed right on the money. Lulu and I decided that our first test drive with my new knee should involve an errand, and a treat. So I dropped a package off to be shipped and then we drove through a fast food joint for a small order of fries which we shared all the way home.

Those were some of the best tasting fries that I have ever had.

So with the car safely in the garage and my knee back up on pillows with an ice pack slapped on top, I feel as though I've passed some kind of milestone.  Wheels and freedom are very good things. I thought it very appropriate that one of the first songs that Lulu and I heard while rolling happily along was Footloose. That's us, all right, my Lulu girl.

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