Wednesday, February 29, 2012

Eye Doctor


I'm off to the eye doctors today. Two years ago this would have meant me giving up about four hours of my life.

I am on Plaquenil to help with my Sjogren's symptoms. It is an antimalarial drug that has significantly helped me. You can read more about it here. Briefly, I went off of the medicine to see if it was causing heart palpitations.  It wasn't the cause of them so I went back on it.  That small amount of time that I was not taking it was enough to help me realize how great it works for me.  The downside to this drug is the increase of developing retinal toxicity or a retinal detachment. You can read more about retinal detachment here. An article I read on MedicineNet.com states...

"Studies have shown that the incidence of retinal detachments caused by tears in the retina is fairly low, affecting approximately one in 10,000 people each year."
 

That doesn't seem too bad, however, I think that the old adage "Better safe then sorry" may apply. The key in taking this medication is to have yearly ocular exam. In the past I was stuck going to an office and sitting around while my eyes were dilated. The purpose of the eye dilation is to allow the doctor to shine a light upon the retina and observe any damage that might have been caused by the medication I am on. The typical exam would usually take me about two and a half hours sitting in the office itself (which doesn't say much about the office I went to) and then another hour and a half before my eyes were fully back to normal. And then of course I had to deal with gritty sensitive eyes for the rest of the day, as well as a slight headache and aversion to the sun. It was just not an ideal situation all around.

Fortunately for me the last time I was in getting my "regular" eye exam for my glasses (which is in a different office) they asked me if I had ever had an OTC (which stands for Optical Coherence Tomography).  They explained that it's an easy test that would only take fifteen minutes of my time, with no dilation at all. I found a very simple explanation here which states...

"Optical Coherence Tomography (OCT) is a non-contact medical imaging technology similar to ultrasound and MRI. With OCT, reflected light is used to produce detailed cross-sectional and 3D images of the eye."

Needless to say I signed right up for it the next time I was due my yearly retinal exam! I went in, sat at a machine that looks like a ginormous viewfinder toy, had the doctor meet with me to read the test, and I was out the door with no lasting side effects in fifteen minutes. As if that wasn't great enough, the plus side is that it gives the doctor a better view then the archaic eye dilating did. And it more efficiently tracks your changes from year to year.

Here is a link to an image gallery of results from the "eye mapping".  And here is a pdf of "OCT Bootcamp".  I found it fascinating as I am sure my fellow health pdf nerds will agree on. He he he  It covers the explanation, the positives, negatives, photos of the machine itself, the read outs, etc.

I wanted to add one last note about this.  Not all insurance companies cover this fully, so be sure to check with your insurance before getting it done so there aren't any nasty little surprises waiting in your mailbox.  I end up paying an office visit co-pay as well as a percentage of the cost. Anyway, I had to share this with all of you just in case there was someone else suffering through eye dilations for Plaquenil when they could be having the OTC done instead!









Sources
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000171/
http://www.medicinenet.com/retinal_detachment/article.htm#detachment
http://www.heidelbergengineering.com/products/spectralis-models/technology/spectral-domain-oct/
http://lomalindahealth.org/media/health-care/pdfs/ophthalmology/oct-b.pdf

Tuesday, February 28, 2012

Hmmm....

Yesterday, after I had gotten home from work, I couldn't play with my baby girl on the floor.  I told her, "I hurt too much today, Baby, I'm sorry.".  Which led to a playdate on the couch instead. But before we started playing her response was, "Mama, you hurt a lot of days!".

Boy did that hurt my heart!! I try so so hard to not let my health problems affect her. However, despite my best efforts they obviously do to some extent. I need to find some peace with that.


Monday, February 27, 2012

Hi Ho...Hi Ho...

...It's off to work I go!

You guys!!!!  I've managed to get myself a job!  (Ok, well the school secretary at my daughter's school technically got me the job. She suggested I apply and then spoke with the principal to make sure they would use me if I got the job. So above and beyond nice of her!) And it seems like a pretty good fit! I am now officially a substitute aide for my daughter's school district.  Which means that I'll be working half days, I won't be working every day, and I pick/choose when I want to work. Love it!

I just found out this morning about the job when I went in to volunteer.  Literally, twenty minutes after I left I got a call from the school's secretary asking if I could work this afternoon. So I did!  I had a great time, besides needing to have a quick lesson in forth grade math since I haven't needed to do forth grade math since....well forth grade!

Needless to say, I am exhausted now after a morning of volunteering and an afternoon of standing while teaching. And I am so SO sore!  I am hoping this Thursday will be nicer to my feet.  Yep! They've got me working a half day on Thursday as well. Yay me!


Saturday, February 25, 2012

I got this fantastic drink pitcher at a great flea market/craft place that I love going to. It was a pretty good price. With it being so big it needs to stay up on my counter so I needed to find a way to use it as a decoration when I am not using it.  I think I did a pretty good job and I took pictures of what I did!

I took old t-shirts that were already cut up and I made them into little material balls. Then I filled the pitcher with butcher paper to the top and placed the material balls on top to make it look like it's filled full with them.


And this is the finished product!!


Friday, February 24, 2012

A to Z

 I felt like doing something different. So I decided to fill out an A-Z survey!


Age ~31

Bed size ~ Queen

Chore I hate ~Cleaning the
bathrooms

Dogs ~A Pomeranian and a Border Collie/Terrier mix

Essential start to your day ~ Watching the weather channel to see what the temp will be for the day.
 Favorite Color ~Periwinkle Blue

Gold or Silver ~Silver

Height ~5"7'

Instruments you play ~None

Job title ~ Stay at home mom

Kids ~ My five year old L!

Live ~In Pennsylvania

 Married ~To an awesome guy!

Nicknames ~ Kris, Kristi (only my family), and Mouse (childhood nickname)

Overnight hospital stays ~ For a week when I stepped on a pitchfork when I was in first grade. (Long story short, it involved wet grass and my foot sliding into the tines of the pitchfork, then developing blood poisoning thanks to rust.) A surgery, and when I gave birth to my amazing little miracle L.

Pet Peeve ~ Rudeness

Quote ~ "We are the music makers, we are the dreamer of dreams." 100 points if you can actually tell me what movie that comes from!


Righty or Lefty ~ Righty

Siblings ~ A younger brother

Time you wake up ~Whenever my daughter wakes up.  Unless it's Saturday and then my wonderful husband, who couldn't sleep in if he was told he had to, let's me sleep in. :o)

University you attended ~None, just community college.

Vegetables you dislike ~Not that I can think of, but there are still a few that I haven't tried so I wouldn't rule it out.

What makes you run late ~My daughter.

X-rays you've had ~Oh so many!!  I probably don't even remember all of them.  I have had more then a few on my hands, a couple on my wrists, on my knee, and shoulder.  I am a perpetually klutzy person!!

 Yummy food ~Crab legs, and anything italian. Mmmm!

Zoo animal favorite ~Our local zoo's Swift Fox are adorable.  L calls them her, "Cuties!".

Thursday, February 23, 2012

More Homemade Goodies

I've been busy making crafts over the last few months. Her are some of my favorites...

A cute little caterpillar onesie I made for my friends baby.
Sweet little bowtie
He'll be set up with a business look, just in case he finds himself needing to go in for a meeting at three months old. Ha!
I love, love, LOVE this saying! I cross stitched it and put up on my little girl's wall, because it's so true. She's my "color".
This was my front door decoration for February.  I made it out of a cereal box, glue, and leftover fabric from L's old pj's!
My Christmas wreath.  I hot glued actual mint candies on the wreath and hand made the little pom poms. I was going for a retro look.
L and I made this for her teacher as her Christmas gift. M&m candies turned out to be her favorite candy!
I found this soup can lid on the group during one of my many thousands of walks from L's bus stop.  I saw it and fell in love with the patina covering the top of it. I just had to take it home and make something out of it.  So I hole punched it with a phillips screwdriver (For those not familiar with the names of screwdrivers that means the one with four corner, not the flat one which would appropriately enough be called a flat head screwdriver.) Then I simply hung it up as an ornament on my kitchen cabin door.

Which brings me back to a point that my friend tried to make the other day about L's obsession with making beautiful new art out of old things others consider trash that seems to parallel someone else's passion for doing the same thing.  I wonder who she could have been referring to???






Wednesday, February 22, 2012

Quilt

As I promised... Dat dat dah-duh....My quilt!



I've been working on this quilt for my baby girl.  I've taken all of my favorite outfits, that L has worn, since she was a baby up until her 4T clothes, and turned it into a rag quilt for her.  It was my first ever attempt at quilt making of any kind.  So admittedly, the edges are quite wonky and altogether crooked.  Truthfully, though, I am just proud with myself that I actually carried out my vision semi-closely to what I have envisioned.


First I had to cut out all the squares of material and batting.  Which ended up being a labor of love, because it killed my hands! Then I sewed an X across every square to keep the batting in place.


I ended up with over 200 squares!

Next I sewed all the squares together.

Then I cut all the edges to make them fray.

And here are a few pictures of the finished product.   
It took me sooo long to make. And more then a little body pain between all the material cutting and sitting on an uncomfortable chair for hours on end.
I am so happy with how it's turned out though!








Tuesday, February 21, 2012

Oh boy!!

The other day I told L to go get dressed.  I wanted her to come back looking something like this...




Instead she came back like this...




...Wearing her Dadd's clothes! After my exclamations of surprise were expressed she siimply giggled at me and said, "What? You just said go get dressed.  You didn't say what I had to get dressed in!"

Oh what a little spitfire she is! She is sooo going to give me a run for my money. Oh wait, my little strong willed one is al-read-y giving me a run for my money!! I love her!


Sunday, February 19, 2012

Evening Call

I got a call from my rheumatologist last night. She had sent me in for some blood work to check my Vitamin D levels. Usually a person's Vitamin D ranges anywhere from 30 to 50. My levels were at 30 when I began taking the 50,000 units, per week, of Vitamin D. Unfortunately, according to my recent lab work, the 50,000 units I've been taking have only raised my level to 31; which is not where Dr. A wants them to be. However, for now, the plan is to stick with the same plan. Ha!  Because I have shown such improvement in my Sjogren's symptoms while being on the 50,000 units she is hesitant to change things for the time being. So I'll be continuing to take it until I see her next month for one of my routine check-ups.

Friday, February 17, 2012

Want Some Cake?

Image found here

Yesterday, I pulled the playdough out for L and we dove at it. We spent over an hour playing with it together. I  was amazed she lasted that long.  To say my daughter usually has a short attention span would be a gross understatement. Yes, she likes to play with the typical girly things; barbies and my little ponies. However, a half an hour is pushing it with her. That's even taking in to account her "set up time"; in which she lines up her ponies and makes herself a little carnival out of a menagerie of real pony furniture and her collection of trash treasures she's managed to squirrel away while my ability to say, "no way, nuh uh, not gonna keep it!" will power was low.

The playdough was a different thing all together. It was something I could actually play with her for a semi-limitless amount of time, at the table, rather than playing barbies on the floor for twenty minutes before being in too much pain and needing to get up. And with her favorite TV subject being about "cake bakers" (her words, not mine), playdough was the perfect tool to bring her "passion" to life.

For the next seventy five minutes a whole new world came to life. We crafted delicate cookies with neon green frosting, big indulgent ink ppastries, and tiered cakes covered in fondant dusted with sugar flowers. There were wonderfully creative patrons who visited our shop as well as some incredibly cantankerous fellas who insisted on cakes that were made for others. What an imagination she has!

I hope she remembers those hours of imaginative play with as much fondness as I will; someday when she's too cool to hang out with her Mommy Mom.

What a delight she is!


Monday, February 13, 2012

Bleh!

I was sick over the weekend. Bleh! I think it was my allergies, which in turn filled up my sinuses, which made me dizzy, and by extention made me nausious and weak.  Oh the fun of it all! So, long story short, I wasn't able to get out and do my walking.  I'm giving myself one more day to gain some energy and I'm back to it tomorrow.

I weighed myself this morning, however, to get a good idea of where I'm at. I've lost ten pounds in the last three weeks since I started! Woo hoo! Nothing is more inspiring to keep going then actually seeing the weigh fall off!  I still have a looong way to go to get to my goal weight, but it's a step in the right direction to a healthier me.


Friday, February 10, 2012

I can't win for trying this morning. I went to the grocery store and couldn't find some of the things I wanted. Once I got home I found out that I bought the wrong thing, two separate times! Then I had to clean up a spill in the fridge. The super mysterious pain in my side has come back. (That my family doctor can't seem to figure out, despite the blood work. So why bother going back in when I just have to get through the pain for a day or so and then it will disappear for another month.) And I realized that the craft L and I had proudly worked on for so long, and was due today, was sitting on our dining room table. Ugh! She's going to be super upset about it. And more so when she finds out that this needs to be turned into a "learning moment" when I start talking about responsibilities with homework. I'm thinking I should cover this now, with her in kindergarten, before homework starts to count for something!

For now my plan is to crash on my couch, move as little as possible, and hope the pain goes away before I have to hobble down to the bus stop for my girlie,.


Thursday, February 9, 2012

Exercise?

Image found here.
It snowed in this part of Pennsylvania yesterday.  It wasn't a very large amount.  I mean it barely covered the roads.  However, it was just enough to cover our landscape in a blanket of newly fallen snow.

Bare with me here when I tell you that I've been trying to absolutely make sure that I get some form of exercise every day. It mostly comes down to me walking around my neighborhood, where there is a perfect uphill downhill scenario that takes me about a half hour to walk on a good day. The time it takes as well as my pace pretty much depends on my energy level for the day. I usually have to make myself go.


Anyway, this morning I saw all the beautiful snow covering everything and just had to get out for a walk! The combination of the snow and sun made everything sparkle. I couldn't stop looking around as I took my walk.  The topper was that I had a "moment" with a blue heron.  Yeah, you read that right! I rounded a corner and looked at a neighbors pond and saw him standing their in all his birdy majesticness. I truly thought he was a statue at first. I'm not really sure why he chose to go there for a drink rather then the small patch of swampy, lakey, water down the street. But he looked at me and I looked at him for a good thirty second. Long enough for him to say, "Hi how ya doing?", at least that's what he looked like he was doing in my head anyway. Ha! When really he was probably trying to size me up as far as how much of a threat I really was to him. Then he took off with those long bluish grey wings of his, but not before he looked back over his wing as he flew away.

As I walked on I thought about how the sun, snow, and blue heron were God's little gifts to me.  A gift of beauty in the middle of a dreary winter, when in my mind's eye, I usually only see His beauty in the spring, summer, and fall. And I thanked Him as well as prayed about many things that I was long overdue praying for.

What a spectacular thirty minutes that was! Exercise, what exercise??

Wednesday, February 8, 2012

Tuesday, February 7, 2012

Medicine Update

I promised I would on the two new medicines that It was put on a few months ago.  So here I am checking in about them.

The first medicine the doctor put me on was Ambian for my sleeping issues.  For the first month I was on it I didn't feel as if it was helping. So I decided to go off of it for a week to find out if it was actually making a difference. Turns out it is making a difference!  I still wake up sleepy but I find that I have more energy through out the day. Yay for me!

The second medicine that my doctor put me on was 50,000 units of Vitamin D. Which doesn't really seem like that big of a deal but apparently it is because I have had significantly less pain then I usually would in the winter. Grant it, this winter has been mostly mild, but I still feel as if the Vitamin D is doing some very real good. I am not certain if this is a treatment that my rheumatologist will want me to be on forever since we didn't get any further in out convo then talking about the possibilities of what the Vitamin D could do.  So for now I am staying on it til the middle of next month, when I see Dr. A again, and feeling good about it.


Friday, February 3, 2012

Ha Ha's

My husband:  "Honey, I think we've gotten to the point to be able to call you 'not normal'. "

Me: "Why? 'Cause I'm such an awesome mom?"

My husband: Long pause..... "Uh, no, your health."

Ha ha Oops! Honest Mistake!



Wednesday, February 1, 2012

Advice

Image found here

A friend of mine e-mailed me today with some concerns she's been having.  It seems that fatigue has taken over her life as of late.  Her doctor wants to begin testing for auto immune diseases, which is scary because there are no real cures for any of them. She was also interested in hearing about some of the treatments that have helped my Sjogren's Syndrome.

My response was this...

"I'm sorry hear that you've been dealing with fatigue. In my experience the fatigue can be so much worse to deal with than it sounds. And often others tend not to understand what the big deal is, thinking that " feeling tired" happens to everyone. I've gotten quite a few, "Yeah I'm still sleepy when I wake up too.", while they don't really get the full effect that fatigue can have on a life.

It's good to hear that your doctor is taking you seriously. While I understand how scary it can be while standing on the edge of this knowledge, I would highly suggest that you go forward with the testing. It's true that auto immune diseases have no cure but there are many treatments available for them. In some instances a person can almost completely suppress their symptoms with certain treatments depending on the severity of the disease. In my own experience, I've found that knowing what I am "fighting" against helps me feel empowered. It lets me feel as if I may have some possibility of control over the disease and more definite control over my treatments.


As for treatments... In my case I have found that the drug Plaquenil has helped significantly in my fatigue as well as my arthritic symptoms. Which is an anti-milarial drug, but has been found to be helpful in treatment of Sjogren's, Lupus, RA, and others. I have also, more recently, found that very high doses of vitamin D (around 50,000 IU) help with my symptoms as well. Studies are finding that vitamin D are helping many patients with auto immune diseases. (
vitamin-d-linked-to-autoimmune-diseasesvitamin-d-linked-to-autoimmune-diseases) There are many many other treatment options available to those who have auto immune diseases as well. 


Anyway, I know I got very long winded there, to paraphrase all of that.... Knowing what's going on with your body is better then wondering what's going on. If you know you can begin to counter all of your symptoms. :o) And there are so so many resources available to those with auto immune diseases. They range from scientific papers, to drug trial findings, to limitless information regarding diseases, and whole communities of support. Feel free to e-mail me with any questions or worries that you may have. Knowing there are others going through the same things can be a big encouragement."


I wanted share all this because I think my friend's e-mail speaks to a very real fear that many of my readers can identify with.  Any extra advice you would think of to give her from your experiences with chronic illness?