The State of Things: Renovation Update!

Above is the state my bedroom was in when I left Monday evening to stay with Dad and Abbie for the week.  You can sort of see the one light fixture on the ceiling, but I don't want to take a picture of it until the room is finished! I'm living out of laundry baskets.  I've had plenty of time to decide between the paint swatches on the wall. 

I should have spent a bit more time thinking about a paint color for the study. I picked a color (based on the decorator's recommendations). When Mom painted a swatch on the wall Monday morning it looked like throw-up. I have an aversion to anything throw-up colored--I think it was a few too many times throwing up in my lifetime. We bought another color Monday afternoon, and I made a very last minute decision before I left to head over to Dad and Abbie's. Keep your fingers crossed on that color!

As you can see I also have my TV in the bedroom. Pretty fancy. I'm completely in love with my TV, which is funny if you know me because I used to go months without watching any TV. Jeannine says: "If anyone had told me 20 years ago you would be so excited about a TV, I wouldn't have believed them." 

I cannot wait to go home tomorrow (Friday) and see my new bedroom and study.  Both Mom and Dad have already seen it and say it looks great, so I'm getting antsy!

I've been staying with Dad and Abbie all week, so here are a few pics of the view around here. It's a nice change of scenery, as they have such a great view of the mountains where they live. Everything is getting so green, the pear trees are in bloom, and the trees on the mountains are starting to get leaves.

I've had lots of bonding time with Dad and Abbie. And Asher is here too, of course. My favorite part of the day is when Dad comes down to say goodnight and 'tuck me in'. That is one of my absolute favorite things. 

The furniture arrives on Monday.  After that we still have to put up the new door and get the TV mounted. Then for the most part we are done with the bedroom--except for adding things like window treatments, an end of bed bench, etc. Hooray!

All of these photos were taken from the deck on the back of Dad and Abbie's house. This is a photo of the ski slopes, which in all of my years living here I have NEVER been on. Nope, I've never skied in my life.

They have a large walk-out lower level (the house is built on a big slope!), which is where Asher and I hang out. When I need to go upstairs, Dad drives the car around the yard to pick me up! The neighbors surely must think we are crazy. 

Check out the pear trees and the weeping cherry on the right-hand side of this photo. I love pear trees!

I'll check in as soon as I can from my new digs (except I won't be using my computer in my bedroom, as I've stuck hard and fast to my new rule to keep the computer out of the bedroom.) 

Blessings,

Emily

Lyme Log: Trip To NY To See Dr. Lyme--The Report

“Wherever the art of medicine is loved, there is also a love of humanity.”

--Hippocrates--

On Tuesday and Wednesday of last week (April 21st and 22nd) Mom and I headed to NY to see Dr. Lyme.  I last saw him a year and a half ago, so it was definitely time for a face-to-face appointment.  Dr. Lyme has a poster in the exam room with the above quote by Hippocrates--and I do feel each time I am there that he and his staff care deeply for their patients and passionately about helping those of us with Lyme disease to live full lives.

All in all the trip went very well and very smoothly.  The travel is still very difficult for me and I'm still recuperating, but what a huge difference between this trip and the last time we went to see Dr. Lyme.  Last time Dad also went along.  We rented a larger car so that I could lie down flat in the back seat. I just remember being in so much pain the entire time and so weak it was difficult to make it to the bathrooms at the rest areas.

This time around I was able to do my own packing before the trip.  We were able to take Mom's car in which I reclined in the front seat. I was able to rest and nap on the way there and on the way home because my neck pain has improved so significantly.  The hardest part for me was the early mornings! That made for some very short nights! I've been making up for the lost sleep since getting home.  I also had a bad night at the hotel with low BP.  But otherwise, I think the travel went quite well.

Still, I'm always happy to be back in my own bed and have all of the things I need right nearby. Plus, I much prefer having Asher to snuggle with and not having to listen to Mom's snoring!

When we arrived at the office bright and early Wednesday morning (8 am!), Dr. Lyme came out to greet us.  When he saw me he said: "You look a hell of a lot better than last time you were here!" I laughed and teased him about his swearing. So, he edited the sentence to say 'heck' instead. I just looked at the picture of me with Dr. Lyme a year and a half ago and I guess I do look better now than I did then! I didn't get a picture of the two of us this time around as I had put him far enough behind schedule already!

Still, for him to be able to remember from a year and a half ago and notice a difference is certainly encouraging--especially after very little sleep, early in the morning, and with no make-up on. He did comment on my lovely dark under-eye circles during the physical exam. I don't remember a time since getting sick that I haven't had these? 

We had a great appointment. Here's the run down:

• Dr. Lyme feels very convinced that I do indeed have Lyme disease. 
• He did a thorough physical exam (which is good because I don't really have another doctor doing this at this point). Nothing remarkable on the exam.
• He did bloodwork to re-test for Lyme and Babesia as well as extensive bloodwork just to monitor other things such as thyroid function, Vitamin B12, etc. I'll get these results during our next phone consult.
• His overall sense is that I am making improvements, but I have a looooonnnnggg ways to go. 
• His goal is to get me independent from my parents. He kept saying that I was young and had my whole life ahead of me.
• He put all of the options for treating Lyme on the table.  He tends to be very conservative in his approach to treating Lyme. For me, this works well. He is open to me trying other types of treatments, including some of the alternative ones that Lyme doctors use.  I find all of the various treatments out there extremely overwhelming to make any sense of and I'd rather stick with more traditional avenues at this point. 
• He did bring up the possibility of more aggressive treatment in the form of IV antibiotics, specifically Rocefin. This would mean daily infusions as well as getting a port. It would mean making myself very, very sick.
• We looked at my current treatment regimen which leaves me with a LOT of room to ratchet up the doses of all four variables:  Bicillin, Zithromax, Plaquenil and Malarone. 

In the end, we decided to continue with the medications I am currently taking.  I will need to really bust my butt more and work at increasing all four variables more. For now we decided not to pursue the IV Rocefin, but I think that next time I go to see him I will get the allergy testing done for it and explore the possibility more.

I have to make myself sicker to get better and this is the message I really left with. If I want to get better I really need to be pushing it with the medications I am on.

While we've been redecorating, I haven't been pushing as hard to increase my medications. It's hard to want to make myself sicker when how I feel right now, while still crappy, is a hell of a lot better than I have felt in years. With spring here, the last place I want to be is sick in bed. At least I'll have a very, very pretty and restful room to heal in.

I am the type of person that wants to know that what I'm doing is the 'right' path or that I'm doing the 'right' thing to get better. The problem with treating Lyme disease is that it is such a crapshoot.  I don't know how one ever knows whether or not they are choosing the best treatment for them or not. We can only make the best decision with the information we have and go from there. It's hard to find a 'right' answer.

Is it possible that another antibiotic might work better for me? Might make me herx less? Or might make me heal more quickly? Yes. But all we have is trial and error. All we know is that with the combination therapy I am using right now I am moving forward. And we'll take that. Do I wish I wasn't such a turtle? Heck yes!

For the first nine years of my illness I researched obsessively and spent hours and hours communicating with other folks with dysautonomia.  Since my Lyme diagnosis, I've found it overwhelming to go on the Lyme boards or research all of the different ways different Lyme doctors treat Lyme disease.  When I try to sort through it all, I just feel like there is no way to really know what is going to work for each individual.  

I'm not sure I understand why I've been unable to immerse myself in researching Lyme the way I have all of my other illnesses. I feel like I need my precious non-herxing time to try to squeeze in a few joyful moments to remind me why I'm going through this treatment. I pretty much feel immersed in medical and health related issues all of the time as I balance managing so many co-morbid conditions.

The last thing I feel like doing is reading more about Lyme when I'm living it all of the time. Maybe it's ignorance or denial, or maybe it's just a leap of faith.  I trust Dr. Lyme and Dr. ANS. I'm moving forward, however slowly, right now. Treating Lyme was a leap of faith from the day we made the decision to do so, and it continues to be a leap of faith, an act of faith, and trial of faith. 

Right now, I surround myself with a couple of other folks also struggling with Lyme and faithfully read the fabulous Under Our Skin blog and that is enough for me right now. That may change in the future.

The trip and the visit really could not have gone more smoothly.  It's just that when I come home from a such a visit, I feel pretty overwhelmed by the road ahead. It's a lot to process and it pulls me out of my 'one day at a time' mode of operation and starts me thinking about what the future might look like and how the heck this ever became my life.  That's a bad, bad place for me to go! 

I had to skip my bicillin shot in order to take the trip to NY, so instead I've been increasing the Zithromax and Plaquenil since we got home. So onward and upward it is with the Lyme meds.

I know many of you have been waiting for 'the scoop' on the trip, so now you have it! 

Blessings,

Emily

Photos:  The sign to Dr. Lyme's office. It's so nice to go into a setting that isn't so 'medical' looking!; The yard around the house where Dr. Lyme's office is. The trees are amazing!; Me outside of the office. Take the picture fast Mom b/c I can't stand here much longer!; The PA welcome center. I'm always so happy to be back in PA!

A Splendiferous Sunday With Miss Erika

In the midst of the moving and redecorating, I squeezed in a visit with Miss Erika on April 5th. (I'm a tad behind on blogging. Life's going faster than I can keep up.)

Before we knew when the movers and such were coming, Erika and I had planned this visit. As the time for her visit approached she could tell from my emails that I was feeling completely overwhelmed and offered to wait to come visit in the summer. She was already going to be in town for something else this time around though and it's such a special treat to see her. 

I am so, so glad that I took a break from the redecorating and took the time to visit with Miss Erika.  I thought it might be good for me to take a break from obsessing about paint colors and it was! She also helped to get me really excited about my new bedroom instead of just stressing. I felt so much better after she was here--filled with the love of a good friend and ready to get back to the work of redecorating.

Erika worked for us as a caregiver in the Fall of 2005.  At that time I was very, very sick. She has been back to visit a few times since then and it's always wonderful. She is also able to see how I have progressed since her previous times here, and remind me that I've come a long way since 2005. Having that outside perspective is invaluable. It's also super easy to have a former caregiver here as a visitor, as she knows how to do anything that I might need and knows where everything is in the house.  She, in some ways, expects to come here and fend for herself a bit and I'm more able to let her do so because she has already been in a helping role for me before. 

This time around she kept offering to help me with things that I can do for myself now and was so excited to see me able to do even these small tasks myself. Still, I know I can ask her for what I need and this time around I did ask her to make an emergency Petco run! Asher chewed through his harness while she was here!

I seem to call many of my caregivers 'Miss' and they call me 'Miss Emily'. Now, I still call her that all these years later. 

We had so much great girl time together and lots of good talks! Thank you so much Miss Erika for taking the time to visit.  I can't wait to see you again and show you the vortex! Your visit this time around was absolutely positively just what I needed.

Blessings,

Emily

Photo: Me and Erika being goofy.  Her bunny ears are really floppy though!

Wheelchair Outings: I Brought All Of You Along With Me!

Today was definitely a day to 'make hay while the sun was shining', as the weather is going to cool off again on Sunday. Plus, I finally got a good night's sleep and a little break from herxing.

We drove to a local park where Mom took me for a ride in the standard wheelchair I currently have on loan from the medical supply store. This chair is super heavy, so pushing me the half mile around the park was pretty hard work--even with Asher's 'help'.  When I get my custom wheelchair it is going to feel like a sports car instead of a Buick! The sun and fresh air were glorious.

I just got the chair on Thursday and have already been out in in twice. Last night Jeannine came over for dinner (wow, a real Friday night!). Afterwards, even though I was exhausted she kept noodging me to go for a walk with the new chair. She kept eyeing it and saying she wanted to take me out for a little spin. She told me she was not going to take no for an answer. So we went for a short little walk to get me over my initial 'hump' of being gun shy about going out in the chair.  Nothing like best friends, eh? :)

Today's outing was very successful.  Even Asher seemed to have a good time. He is usually not an enthusiastic walker, dragging behind Mom, and dawdling along. Today he was very perky.  I wasn't sure how he would do with the wheelchair as he tends to get under our feet a lot (he's a herding dog) and he barks at everything that moves.  He had already been barking at the chair in the house. I'm happy to report that he did great! Now, I just need to train him to pull me!

In the photo above I am also decked out in a new shirt I got on another outing.  It's called 'Pink Happy Floral Print'. Perfect. Two weeks before Easter I decided I wanted some cheery spring clothes. Unfortunately, I tend to jump into things a little too fast, overestimate my abilities and energy level and overdo.  While I really loved being able to pick out my own clothes and make my own decisions (and got some super cute clothes), the outing left my ANS in a storm that kept me up all night.  We only went to Penney's, and to ONE section to look at ONE brand of clothes, but I still got sick. Malls are probably not the best place to go on a busy weekend! Way too much overstimulation. I think it has been at least five years since I have been to the mall! Now I know why. I didn't even recognize most of the stores.  Still, I felt empowered being able to choose what I wanted.

I have a whole world out there to explore! I can't wait!

On Thursday this past week, I met with the specialist from the medical supply store who works exclusively with selling and fitting wheelchairs. He came to my house and brought an ultra lightweight chair for me to try.  It was a strange feeling to get in a chair and try it out for the first time. What I found was that I could push myself with ease! I could not believe it. The meeting was great, but also very overwhelming.

I did not realize how many options are available and how many decisions I need to make, including color of course! If I knew what I wanted know, I could potentially have my custom chair in about six weeks, which would be great for summer. But I also want to make a careful and well-thought out decision, so I am going to have to slow the process down a bit which is hard because I'm really itching to get the new chair. The one we have on loan is incredibly bulky, heavy, and hard to use. 

After the middle of May, I think I may have to declare a decision-free month! Good grief. I am so tired of decision making right now with all of the decorating and wheelchair stuff.

More than anything, I want to thank all of YOU--my readers, friends, and family--for your support as I have started the process of getting a wheelchair. 

I had no idea what would come out of the post I wrote on getting a wheelchair. I just knew that I had to write about it because it is such a significant part of my life right now.

Your responses brought me smiles and tears.  You gave me strength and courage.  You humbled me.  You empowered me. You told me to use the tools available to me. You told me 'way to go'. You told me to 'get out there and mix things up.' You told me that the people who get out there and live their lives, even if they are in a wheelchair, are the winners. You told me you couldn't wait to take me on an outing. You told me it would feel like old times just to run an errand together. You told me you'd take me out to dinner. You told me this was a great decision. You supported me 100%.

Most of all, you enveloped me in love.  You reassured me that you loved me, chair or no chair. That you wanted me to live my life as much as possible and you were right there with me, cheering me on, and loving me through every step. 

The ego is a hard thing. I watched an Oprah with Michael J. Fox shortly after I posted about getting a wheelchair. He said that vanity has to be the first thing to go. That you can't spend time worrying about what you look like or what other people think of you. I know he's right, but that's easier said than done.

What I do know though, is that when I went to the mall, for a little walk with Jeannine, and to the park today, I felt like I could do it because I knew the people who love me the most and know me support me.  And I cared a lot less about what anyone else around me saw or felt. I felt you with me on all of my outings.

On each outing we ran into people we knew--either they said nothing and acted completely unphased by the chair, or they said how glad they were I was out enjoying the fresh air and using the new chair.

I continue to find my blog to be one of the most rewarding and fulfilling things I do.  I've missed having much time for it lately, but I know I'll find my groove once some of the redecorating, chair decisions and doctors appointments are over! I also find that increasingly I have to rely on it as my primary method of keeping in touch (especially while most of my energy outside herxing and resting goes to these major physical and emotional changes happening in my life right now). Thank you for helping to make my blog a place that I can always be me. And thank you for reading!

Blessings,

Emily

Photos:  Local park (it was busy today!); Me stylin' in my new blouse. My first wheelchair pic; Asher walking in front of me as mom pushed me.

Love At First Sleep

Just a quick check-in regarding my 'new digs'! 

I will get back to blogging, posting pics, Facebooking and emailing as soon as I can but until then I just wanted to pop in and say:

I LOVE my new bedroom.

Even though it is in complete disarray and completely unfinished, I love being in the new space. We are gradually getting each of the things in place. It will still be about a month before everything is done.

When I got back from Dad and Abbie's last week, all that was in my room was my bed, my old nightstand, my bedside stereo and a lamp. And somehow I still fell in love and felt sooo happy in there. I still do. And I also feel more peaceful than I did in my purple room by the end of my time there. Now, I have lights and a TV! We're making progress. :) My dresser right now is a series of laundry baskets on the floor. It works quite well for me. I can just sit on the floor and pick out everything I need in one fell swoop. 

I'm completely beat, as are all of us. As you can see Dad, Mom and Abbie have been tirelessly helping with this whole process.  Here's Dad shampooing the carpet in my 'old' bedroom on Saturday afternoon.

Most days, I feel grateful for the exhaustion that comes from doing the new room and grateful that I can participate in the process at all.  But some days it's pretty overwhelming (and I'm really not doing much of the work at all, especially none of the physical labor)!

I don't have any pics of the new room yet...so you will just have to wait! I can't decide whether to post pics as the process happens or wait until it's complete.

Right now we are living in total chaos and disruption. 

Asher is still a bit confused by the new location. Each night when I tell him to head to bed, he goes into the old bedroom and stands there completely bewildered. I turn the light on for him and tell him that there's nowhere to lie in the room.  He looks around and finally I tell him to head into the new bedroom. Once he's in there, he's completely content.  Last night I didn't even put the baby gate up and he stayed in the bedroom the whole night! Yeah!

So far I've stuck to my new rule of no computer in the bedroom. This means I have to find a new set-up and time to spend on email and blogging.  I've also added in an increase in Lyme meds starting this past weekend and they are taking away quite a bit of the newfound energy I was enjoying! 

So I may be a bit more quiet than usual, but I'm definitely enjoying my new space and the sanctuary it creates.

Off to rest as my shot is kicking in big time!

Blessings,

Emily

Photo:  Dad shampooing the carpets! They were kinda gross! I hope Asher doesn't throw-up as much in the new room!

Goodbye Purple Room

This afternoon (Monday) Dad and Abbie came over to empty out dresser drawers, strip my bed, unplug things, and other miscellaneous in preparation for the movers on Tuesday morning.

After everything was done, I sat on the bed and took one last look around at the room.

For a few moments I felt a bit sentimental. But mostly I felt that I'm not going to miss this room. I'm ready and excited to move into a new space. 

I'm ready to move into a space that hasn't been only a sick room, to move into a space that is more grown up and to say goodbye to my little girl room and say hello to my adult room.

I'm ready.

I'm exhausted from all of the disruption, chaos and planning. But I'm also amazed that I can even tolerate the stress and disruption enough to make this move. I couldn't have done that even a year ago. It's been an all-consuming process in combination with all the medical stuff I have going on. At least I have some energy to be consumed by something other than just medical stuff though.

When I get home tomorrow after my shot, this room will mostly be empty. 

Here are a few pics of the 'ol purple room. It was definitely a princess room!

  

The 'winter bedding' ensemble.  No, Asher did not come with the bedding.

The summer bedding ensemble.

More Goodbye To The Purple Room...

My furniture. I've had it since first grade. Don't you just love the pretty little flowers? Oh my!

I do still love the Emily print above the dresser, which Jeannine got for me in D.C.'s Chinatown for my 30th birthday.

My lovely flowery dresser. Does anyone need a set of furniture for a little girl? It's still in really good shape! Seriously. Let me know! It's taken some pretty tough wear and tear over the past 28 years!  Aaaah, they just don't make things like they used to do they? :) This furniture served it's purpose and it well.

My goofy TV set-up so that I could see my TV while reclining in bed. Hey it worked, and helped my neck.

Oh, and don't forget to vote for Obama. :) Yeah, I know. The election is over. But the poster is still cool.  And so is the photo from Jess and the Hope quote on the wall.

Yikes! Look at that mess. And is that a computer in the bedroom? Tsk. Tsk. I don't know if I can break that habit. But I am going to work on it.

And do you think there is any way to just infuse me with some sort of inclination and gift for being more organized? I hate that I am disorganized and messy. I'm sooo envious of people who find it natural and easy to be neat and organized. 

Just posting these pictures and writing this post makes me very ready to move into my new bedroom and decorate as a 33 year old and not a 25 year old. My tastes have definitely changed!

I'll post pics as soon as I can! It will be a while though until the new room is painted, the furniture has arrived, and the TV is up! At least I'll have a bed and lights by the end of this week!

Blessings,

Emily