Friday Afternoon Visit: Kale and Rebekah

I got another Friday afternoon visit from Rebekah and Kale today! Kale is now six weeks old, much more awake and alert, and Mommy has 7 1/2 inches less hair than last time she was here. He's still a bit of a fussy pants, but with our expertise we caught some quiet moments on camera!

I didn't sleep at all Thursday night and I think I saw almost every hour pass on the clock. I thought I would just cancel and have Rebekah come another day.  When we couldn't work out a time to reschedule I knew that I'd feel worse missing out on a visit from them than I would being tired during the visit. I would have just been sitting at home being a crabby pants and feeling disappointed about not seeing the two of them.

Thanks Rebekah for another visit from you and your cutie. It's so much fun to see both of you! What am I gonna do when you go back to work? :P

Blessings,

Emily

Photos:  Kale (six weeks old) and Rebekah; Me and Kale.  You can't see it on Kale's outfit, but he's wearing something with little doggies on it again (Me and R are both big dog people!).

Cousin Day Visits

My cousin Dana (a.k.a. Day) is well-known here for the continuous stream of postcards she keeps coming to our mailbox.  It's quite the motivator to make me go to the mailbox most days. That and my TV Guide. She manages to find the funkiest postcards around the city of Chicago. It's like getting a tour of the city through cool postcards--from museums, from restaurants, from art shows--which I love because I haven't been to Chicago in more than 15 years. So far my favorites have been postcards of the famous buildings in Chicago.

 Lately, a friend gave Dana a bunch of Garfield postcards --I wonder how old those are?! Dana is full of goofy and entertaining stories (I think she could be a writer), and her friends like to chip in with commentary too.  The smiles are always appreciated!

Here's the face behind the postcards:  Me and Day by the irises in the yard.  These are pics from her visit here over Memorial Day weekend.  The photo op was the biggest 'outing' I had in days!

Mom and Dana by the irises. My mom has one brother, Stan, who came to visit us in August 2007.  Dana is one of my two cousins on that side of the family. I cannot seem to find a resemblance between myself and Dana! I look like the oddball on the Jewish side of the family.

I love, love, love the shirt that Dana is wearing!

Dana was here Memorial Day weekend--right after my latest ER trip.  I'm not sure if you can tell from these photos how completely wiped I am or if the blush I'm wearing saved me. 

We delayed Dana's visit a day, but I still hadn't really recuperated at all, which was very frustrating as I haven't seen Dana in four years.  When company comes I can usually 'perk up' and crash afterwards.  This time around I felt crappy and cranky to boot--which always makes me feel disappointed because people travel so far to visit and take their precious time and energy to do so. I don't like to feel like I'm letting my visitors down.

Thank you so much for coming to visit Day--and for your continuous flow of mail for FIVE years now. I hope that next time you are here to visit life finds both of us in a new and more contented place.  I know you will start missing the slow pace of life we have here, all of the green, and most of all, the ICE CREAM! :)

Lots of love, 

EE

Photos:  A collage of postcards from Dana; Me and Dana out in the yard (I managed to get outside on Day 2 of her visit to take photos); Mom and Day; Me and Day hanging out in the sunroom.

Opening

"When one door closes another door opens;

but we often look so long and so regretfully upon the closed door that we do not see the ones which open for us."

--Alexander Graham Bell--

On the same day that I took the peony pictures, I also captured our irises blooming in various stages.  

As much as I promise myself not to look at the closed doors, I so often catch myself doing so. I really hate when I get stuck in this place of looking at what I wish I had or what I thought I would have.  I seem to do so especially as my anniversary of getting sick approaches. Maybe I need to just accept this as part of the process and part of the experience of chronic illness?

Still, I'm listening and watching carefully to see what new doors are opening. I know they are there. I'm just waiting to discover them.

Blessings,

Emily

Photos:  Irises in our yard--closed; partially open; fully open.

Evening Walks...

Mom, Asher and I have been going on regular evening outings with the wheelchair. Some days we don't get to go either because of the weather or because I'm not feeling well, but we've been making an effort to go out as much as possible--sometimes just for twenty minutes, sometimes for up to an hour (that was the record we set tonight!).

As we started out tonight the sun was setting.

Asher met a new friend, Ernie. Ernie is another rescue dog--a cocker spaniel-golden retriever mix. I had never seen one of those before!

Asher is the ultimate ice-breaker. I'm not sure I'd be as willing to go out in the wheelchair if it wasn't for Asher. He takes some of the unwanted attention away from me as everyone wants to pet him or asks what kind of dog he is.  And he's always ready for attention! He's also never been this enthusiastic about going for walks, he's getting very good at walking beside the wheelchair, and he comes home exhausted!

I still have a love-hate relationship with the chair. And I suppose I probably always will. Right now, that frustration is made worse by the fact that my new chair (the ultra-lightweight one) doesn't look like it will be here before July. Right now I'm awaiting approval from Medical Assistance. They have 21 days to make a decision. Please send a good thought that it gets approved! 

So we are still using the loaner chair, which is bulky, almost impossible to transport, and doesn't give the most comfortable ride. Mom braved loading it into the car tonight and we were able to go on some smoother bike paths, and get a change of scenery.  It was quiet, peaceful, and lovely.

We also met so many lovely people tonight.  I wasn't really in the mood for seeing anyone, but in the end, it was such a treat to chat with so many new folks.

For the most part, people have been lovely and made me feel more at ease. But I still feel strange seeing the world from this point of view. I will say that it makes stopping to chat with people much easier because I don't have to worry about episodes of near-syncope!

We saw a bunny.  The bunnies are everywhere this time of year! Some even dug a burrow in our backyard, but I think they must have quickly figured out that wasn't such a smart idea since that is Asher's turf!

I've been feeling very trapped and isolated lately.  Sometimes I just feel like the walls are going to close in on me.  This is exacerbated by the fact that while I feel trapped and isolated, I don't really have the energy or feel well enough to go on outings or reach out much. Some days I also feel like I'm so grumpy I can't stand myself, so I'm not sure I want to subject others to that! :P

Jeannine often comments that she finds it so ironic that I have an illness that leaves me so isolated and spending so much time alone, because by nature I am a very social individual, enjoy being around others, and don't like a lot of alone time (although I am working on this!).

When we started our walk, we enjoyed watching the sun go down. As we approached the car to head home, the moon shone directly towards us. It was a lovely close to the evening.

As I downloaded the photos after we arrived home, I couldn't help but think that we had spent the end of Shabbat perfectly.

Blessings,

Emily

Photos:  A walk around the nearby bike path:  sunset; Asher and Ernie (Marcy, you would so love Ernie!); bunny; moon.

Pink Peonies

The other day, I finally got outside to take a few photos before the spring flowers completely disappear.  I made it my mission last Friday, if at all possible, to make myself go outside to take some pictures, smell the peonies, and bring in some fresh-cut ones for a bouquet.  Asher served as photography assistant. 

I loved looking at the peonies in various stages of blooming.  I also think of myself as budding or blooming, so I find myself very drawn to watching the cycles of the flowers and trees in our yard.  Sometimes just looking at a flower or tree--seeing them come back year after year, facing the sun, and cycling in and out of bloom--reminds me to take a deep breath, to hold on, to remember God, to keep pushing through the treatments, to see the beauty around me, to recognize how long and difficult the process of healing (and becoming who we are meant to be) is, and to accept the stages of spring and winter as part of life, not just illness. I feel that taking photos makes me take more time to really pay attention to the details of nature and of life.

These photos are for you, Mommy Bev.  You've taught me to hold on to the Spring days and to never lose faith that more Spring days will come my way. You constantly remind me of the image of a blooming flower. You've taught me so much more than just that, of course, but these photos made me think especially of you.

Too bad the photos are so much smaller once posted in blogger...because in the above photo I even caught a little bug crawling around!

This is the same peony that is in the previous picture, just a little closer up. 

Happy Friday!

Blessings,

Emily

Photos:  Pink peonies in various stages of blooming (in our backyard).

Coming Soon: The Big Reveal

I've been asked a certain question a lot lately:  How do I like my new room?

I can't believe that I have been in the room for a month now.

I'm hoping to post pictures of the 'Big Reveal' soon!  I still have to get a couple of things done before I want to take the pictures and post them.  Hopefully I'll have the painter come in the next week or so to change the lights over the bed (which he put on backwards after he was done painting! :)) and he will paint the new door.  

As for the study, so far we just have the walls painted and nothing else figured out. I have no idea what colors I want to do or what sort of set-up I want. We also need to tear up the carpet and get new flooring (I think Asher threw up one too many times in this room. :().  I think I will really enjoy having a separate space just for my computer and other 'work-related' things once it is set up in a more useable fashion.

Right now, I just want to say that I love, love, love my new bedroom!  I'm so pleased with how everything turned out and came together.  I'm also relieved that everything came together so well!

I can't believe how wonderful it feels to be in this new space.  Asher loves it too. He heads into the room all by himself at bedtime. He must have felt the 'negative psychic energy' of the old room too? 

I don't know, but we both love it and are enjoying it very much.  Even when I'm in bed herxing, it's such a fresh, comfortable, healing place to be.

For now, I'll just leave you will two pictures of Asher right after he settled in for the evening. I am not sure how exactly he finds the position in the bottom picture comfortable, but he does! Oh, and he's wearing his Memorial Day ribbon that he got at the groomer. So very stylin'. 

Blessings,

Emily

Photos:  Asher next to my bed in my new room. All ready to settle in for the night. No baby gate needed!

ER Trips and Holiday Weekends...

So, I guess I know how to start off a holiday weekend with a bang--if you call 'excitement' a ride in an ambulance to the ER right before Memorial Day weekend. I was just glad to go before the weekend kicked into high gear so that I didn't have to compete with the large weekend crowd of people at the ER with bug bites, broken bones and alcohol intoxication.

By now many of you have already heard the full scoop, some have seen the 'partial scoop' on Facebook, and some of you have asked but I haven't filled you in yet.  At this point I'm getting over my vanity and posting what happened.

This post is long and yes, it does share a lot of the gory details. So if you're not up for that feel free to hit the delete button! This is for the folks who were asking for the full scoop! I've put the 'bigger details' in bold or larger font so you can just skip to those!

I woke up at 10 AM Thursday morning before Memorial Day weekend with stomach pain. I raised the head of my bed (it's adjustable bed) hoping that it might just be a little acid and would resolve.

It did not.  I ended up shortly thereafter with excruciating pain (both upper and lower GI pain), severe nausea, and some not-so-tasty burps. 

I have had similar attacks in the past.  They mimic the gallbladder attacks I had before I had it removed. Usually, the attacks I have had since the removal of my gallbladder resolve after a few hours and I am able to wait them out. The attacks are excruciating and draining, but they do eventually resolve.

On Thursday I tried, to no avail, everything in my arsenal of medications I could think of to abort the attack--Librax, Zofran, Zantac, etc. etc.! 

Mom had to go to work. I was too weak to be able to get fluids for myself or move around, so Dad stayed with me for the afternoon.  I also knew that if I started tossing my cookies, I'd be too weak to be alone. He and Asher took very good care of me.

By 7:30 Thursday evening I hadn't gotten any relief.  I called the on-call doctor--who in the past has been not at all helpful--and he was incredibly helpful. He suggested going to the ER, but also confirmed that I was using medications that were okay to use, the I could try to wait it out until the morning and call immediately at 7:45 AM for an appointment.  I suspected, and he confirmed, that the attacks I have had since my gallbladder surgery might be caused by a complication known as sphincter of oddi dysfunction.

At this point, I thought that I was keeping myself hydrated enough, so I stayed home. I finally tossed my cookies and thought maybe I'd be able to get some sleep. Ha! Dad stayed the entire night with me so Mom could get some sleep. Dad did not get much sleep, that is for sure! 

By the next morning I had only slept about three hours total in a 22 hour period.  Dad left to take Asher to the groomer (thank goodness because Asher would have freaked if he had been here when the ambulance arrived!). 

I wasn't sure how we were going to get to the doctor, but we were going to try. Then, I started throwing up bile and was so weak and exhausted. My poor mom and all of the throw up she has had to deal with in my lifetime! I always pick her 'shifts' to during which to throw up! Dad missed it all (which is a good thing!).

By this point, I knew we were headed to the ER.  Mom said: "Are we calling the ambulance?" as she stood there trying not to toss her own cookies. 

This was not my first ambulance ride.  

At this point, I'm at peace with calling the ambulance when something like this happens.  The EMTs, paramedics and police officers are always amazing.  They always reassure me that I have made the right decision, that this is their job, and this is what they are here for. 

The policeman was here in less than two minutes! We asked how he got here so fast. Turns out he was at the entrance to our neighborhood when the call came through!

Honestly, I think I looked so green by the time they arrived they knew I needed to be transported.  

I know now that as hard as it is to call the ambulance, it's the best way to get the care I need. I get too weak to be trying to sit up in the ER and wait for a bed. The hardest part is all the alarm I cause the neighbors! Alexandra's dad, Scott, was over here within a few minutes asking if we were okay and if there was anything he could do. He even brought my mom lunch in the ER. And Jeannine works at the hospital, so she popped right on over to check in--although they were giving me the morphine and I wasn't too with it! 

I really hate to have to go to the ER. It's an absolute last resort for me. Unfortunately, sometimes I wait a bit too long to make the decision to go!  7:45 in the morning is a perfect time to go though! It's not busy at all! 

I wasn't overly thrilled with the ER care--the doctor was pretty dippy, but the nurses were fantastic. I hate how they always tell me I have a virus! Really...this has happened multiple times. Same symptoms exactly. It has to be something else!

I got hooked up to warm fluids and then received morphine and Zofran intravenously. I don't think I will ever get morphine again...yuck! It made me feel awful.  It didn't stop the pain. The ER doctor insisted that I eat a popsicle, which I then promptly threw back up. Ugh.

Next we tried a 'GI cocktail' of Lidocaine, Donnetal, and Maalox.  Okay, that is some seriously nasty stuff to drink. I had no idea you could drink Lidocaine. But it worked! Immediately. I also got a hefty dose of phenegran in my IV and I was out of it after that. 

I think I was so exhausted from the pain and so many hours awake that the combination of so many meds and the pain relief made me just konk out.

I had also waited too long to get to the ER because my sodium levels were very low and my potassium levels were also low.  What concerns me is that I had worked very hard to stay hydrated and had really not thrown up that much, so it is strange that my electrolytes got so out of balance. This has happened to me in the past.  But it's pretty hard to go to the ER and say: "Hey, I've only thrown up once but I think my electrolytes are off!" 

We got home around 1:00 on Friday and I slept all afternoon.  

My cousin Dana was scheduled to arrive Saturday at lunch time for a visit.  We postponed it until Sunday, but unfortunately I was feeling really, really crappy and cranky the entire time she was here. 

On Tuesday after Memorial Day I was extremely fortunate to get in for an appointment with my PCP.  In the past, when I have had these attacks I have bounced back pretty quickly.  This time I did not.  I was exhausted, weak, dizzy, nauseaous, and had NO appetite.  

My PCP is not so great with the chronic illness issues.  This is the first time I have seen her for a more acute problem and she was great.  

She feels that I do not have sphincter of oddi dysfunction, which is in fact, a very good thing because the only way it can be 'fixed' is through a surgical procedure that carries a lot of risk.

Her feeling is that I have gastritis. All I could think was something called gastritis could make me this sick? Likely, I have a lot of acid in my stomach from all of the antibiotic use and also because I am not able to sit up long enough after meals.  Gastritis is an inflammation, irritation, or erosion of the stomach lining. I seriously wonder what my poor stomach looks like on the inside! I was really trying to avoid an endoscopy, but I am not sure that is going to be possible at this point.

I already take Prilosec every day.  My PCP added in something called Carafate, which Itake one hour before meals and at bedtime, to coat the stomach.  I've been on a bland diet (which is fine, because I have very little appetite or taste for anything. I'm saving my mom a bundle on food this month!). I also took Zofran for most of the week for the nausea.

I had to skip my Bicillin shot, and will likely still have to get a lower dose tomorrow.

It wasn't until this past Saturday when Rebekah was here that I finally started to feel better.  Sunday was the first day I woke up feeling any sense of hunger. Thankfully, I have Mom's Jewish penicillin to sustain me!

I'm still not feeling back to baseline in terms of energy or appetite, but it's certainly improved since the ER trip.

At the end of this month I have an appointment with a GI doctor, so I am hoping that he can help to put the pieces together as well as come up with some solutions. Until then, I just want to stay 'attack free'. I am not sure I'm convinced one way or the other if it is gastritis, sphincter of oddi dysfunction, or something else.

I feel like all I've done is sleep and rest even more than I usually have to for two weeks straight. This latest health issue got me really frustrated and down.  I feel like I try so hard to stay on top of things, to prevent any new problems from coming up, and to manage my health as best I can.  It's so frustrating to me how chronic conditions can snowball into other conditions. I feel like all I do right now is go to doctor's appointments.  

I'm not ready to start over tomorrow with a bicillin shot.  Grrrrrrrrr!!!!!

So, have I lost all of my vanity at this point? Yikes! I've told the gory details so many times to folks, that I decided to just write what happened. Maybe it will help me process what happened and move on a bit too.  I always find ER trips a bit traumatic, even if they go as smoothly as they possibly can go. 

Thanks so much for all of your love and support through email and Facebook and for your great senses of humor--I woke up on Saturday afternoon to some very funny responses on my Facebook page.  Special thanks to Scott for helping out and to the rest of our lovely neighbors for their care and concern.

And, of course, I'm completely indebted to my parents who had to deal with all of the really gross stuff and who lost a LOT of sleep!

Blessings,

Emily