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Sunday, April 15, 2007

Grief and Gratitude....

"There was a boy, and very strange and shattered boy. They say he wandered very far, very far, over land and sea. A little child, but very wise was he. And then, one day, one magic day he passed my way, and while we spoke of many things, fools and kings, this he said to me:
The greatest thing you ever learn is just to love and be loved in return."
-From the Song 'Nature Boy'-



Contrary to what may be becoming popular belief, I have not dropped off of the face of the earth (or at least not completely!).

I just wanted to get a long overdue blog written with a bit of an update to let you all know that I am thinking of you, missing you, receiving your emails, and wishing so much I had energy to be in touch more. Your emails and calls are NOT going into a black hole...they are appreciated so much. I feel such gratitude for your emails, yet such grief that I cannot respond to so many of them. I literally lie in bed when I do not feel well and write emails in my head to y'all!

I was so overwhelmed by the response from so many folks to my holiday letter, including many with whom I had lost touch. I have YET to get back to some of you who responded--John, Heather K., Britt, Caroline, Mackenzie, Tess, Julie, Sean, Renu...and I'm sure I'm missing someone! I am so sorry! (Erika, you would NOT be happy to know that I have not kept my inbox under 'control')

I really can't believe that it is the middle of April already (although you wouldn't know if from the weather we are having). I'm still wearing flannel PJs!

Here's the scoop on what's going on:

For me, I've been quite 'busy' given my 'awake' time each day and the need for long recovery periods after any 'outing' to the doctor or having a visitor.

1. VISITORS, VISITORS, VISITORS! 2007 seems to be filled with the blessing of lots of visitors--some of whom I have not seen for many years. My friend, Sarah, said, "Is something in the water this year?!" I continue to be incredibly grateful for the faithful friends and family in my life, and also incredibly thankful to those with whom I've gotten to re-connect. I feel overwhelmed by the abundance. I am also so thankful that folks are willing to take the extra time and energy to travel the distance to come to visit, or take time out of their quick visits home to see family to stop over for an afternoon visit during my 'awake' time.

So far this year I have seen high school friend, Sarah and her family. I got to spend time with her husband, Bob, and meet her stepson, Kyle. Because I had missed their wedding in December they had planned to come dressed in all of their wedding attire! The weather turned out to be crummy and snowy, so they decided against the idea--bringing instead their wedding album and a votive candle from the reception so that I could dine in style during lunch with them. I was incredibly touched by their thoughtfulness and generosity. The votive holders they used at their wedding reception were designed with a butterfly on them in honor of my inability to be there and my love of butterflies. Sarah has been such a faithful and loving friend through all of this. I really enjoyed spending time with all three of them and meeting Kyle.

Three other high school classmates stopped over for visits while in town to see their parents: Kate, Jess and Deb. I had not seen any of them since 1998 (other than a brief visit with Kate at our reunion in 2004)!!! Seeing all three of them was so amazing--at once like putting on a comfy old sweatshirt and connecting as if we had seen each other yesterday. And, to see us all as 'grown-ups' now compared to seeing them last when we were still in college was fantastic--but also made me feel a bit old!

I felt a bit as if the last time we were all together (probably at some get-together when we were home over a holiday) we were in so many ways still girls and to re-unite as women was really quite remarkable. We lost touch mostly just because of lost email addresses, moves, marriages and babies, my illness keeping me from being able to keep in touch as much as I like with folks, etc.

I've known Jess since fourth grade and Kate and Deb since seventh grade when we all became part of a 'group of eight girls' who were friends all through high school. We spent so much time together, essentially growing up together...so it was easy to quickly feel right at home together and for them to feel right back at home in my house where Jess used to freely open the pantry cabinet and search for what was available to snack on!

I got to see Kate four months pregnant with her second child (and am hoping she'll be back to town to show off her larger pregnant belly!), catch up with Jess for the first time in 9 years, as well as meet her little daughter Zoey (who her mom brought over for a quick visit). For the most part I've not met any of my friend's children, some of their spouses, or even been to their weddings...so getting to see Kate pregnant and meet Jess's little one was great fun. (I was quickly reminded how little energy I have as I watched Zoey exhaust me in 20 minutes flat with her talking and running non-stop). I had a bit of a freak out moment hearing Jess be called 'mommy' by this adorable little girl who loves Elmo, Elmo and Elmo! I didn't get to meet Kate's little one, Alex, as he was napping and we opted for 'girl time' together instead. Hopefully next time I will get to meet him!

This past Friday, I saw another dear high school friend, Deb. I was so excited to see her I somehow managed a 2 1/2 hour visit. I've now spent the rest of the weekend in my tortoise shell. I must have used up every ounce of adrenaline. Seeing Deb was a most joyful visit and I'm already on her case about when she will get another break from her fast-paced job as a PT (Congratulations Deb on now having a Doctorate in Physical Therapy! :)) to come home for another visit, as after nine years we have a LOT of catching up to do! I still remember the day I met her in music class in seventh grade, after which we became fast and close friends. After completley losing touch for several years, seeing her again and being with her brought me to tears. She showed up carrying a pink gift bag with a gorgeous purple journal inside, which is the same exact color as my bedroom! I teased her about the pink and purple and she said, 'Well, I always remembered you were pretty girly!' Some things never change! Deb, are you noting the colors of my blog--pink and purple are still my favorites!

Seeing these women--whom I had not kept up with very well--happy and healthy brings great joy to me. For me, because we grew up together and spent so many lunch hours, band trips, threatre rehearsals, math studying, not to mention HOURS and HOURS gabbing on the phone, they'll always be a part of my heart and I care deeply that they are doing well.

Former caregivers, Erika and Renee, both made it to State College for visits also. Erika squeezed in a visit over her spring break from grad school for an overnight, and Renee stopped by while in town for a cattle show (my farm girl Renee!). Asher was so happy to see Erika he chose to sleep in HER room and not with me! It's amazing how these women came into my life as caregivers and became friends. I'm sad that Erika has moved so far away for grad school, meaning our visits will be few and far between...


I did not get Thank yous out to all of you...so this blog is my thanks to you for bringing me such joy! And the gift of great conversation!

Next week, another high school friend, Ted, his wife, Erin and their daughter, Aislinn, will be in town. I can't wait to see them and to meet little Aislinn for the first time.

After their visit, I will be seeing three Davidson friends! First Marla, over Mother's day weekend, in all her pregnant glory. She said she'd better get here before baby number two arrived or Lord only knew when she'd be able to get away again. She'll be sojourning from Tennessee and this will be our first time seeing each other since Davidson graduation 9 years ago. In mid-June, Loralea, former 'roomie' and close friend, will be flying up from South Carolina, also six months prego to celebrate her graduation from her masters program as well as one more girls only weekend before she becomes a mommy. Then, in June, I am also looking forward to my annual visit with Carrie and possibly her husband, Sam, too.

These visits sustain me, as do your emails and calls. The only bummer is that each visit results in a serious 'crash' afterwards. I find this incredibly frustrating. I do not believe there should be such a consequence for JOY!

Everyone is amazingly accommodating to my limited and inflexible schedule. I'm really only 'awake' from about 1-3, so this is when I try to squeeze in anything and everything that needs to get done.

After visitors leave, it's a double-edged sword. I feel gratitude that I was able to see them. I feel grief that I don't feel 'well' during their visits. I also grieve that the visits must be so time-limited and that by evening I will be curled up in a ball sick as a dog. Luckily, all the visits have been spaced out fairly well and I was able to see each person. I almost had to cancel on Kate I had been herxing so badly, but thankfully, got enough of a 'window' to see her. I'll do pretty much anything to see someone, even if it means paying a very high price later. The hardest part for me is knowing that for me a visit with a friend IS my day, whereas for her it is just a small part of her day, her weekend home. For me, it is my whole weekend. I feel grief that I can't be out in the world the way I want to be. I feel such gratitude to see my friends thriving, yet I admit to a tad bit of selfishness when I say that I grieve that I cannot be out living my life also.

Aaaahhhh, but enough philosophizing for one blog entry, eh?

2. 'DOCTORING'. Also on the schedule is lots of 'doctoring', going to 'ologists', etc. etc. Fun, fun! On these exciting journeys outside of my house I get to notice the buildings popping up that I didn't know were even there before! That is certainly a sign that I am not leaving the house often enough AND that our town is growing much too quickly into disgusting urban sprawl--ugh!

I have two appts. down and three to go (all this week), plus regular treatments for something every two weeks. This is more than I have left the house in months! Nothing major has been going on out of the 'ordinary' for me, but a few things have cropped up and so far all docs have been going to bat for me on stuff. They find me 'unique and puzzling,' but nonetheless, are sticking by me. I do think something MUST be in the water this year for the latter to be the case!

3. HOW AM I FEELING? Many of you have been asking for an update from me as to how I am feeling and how I am doing. Have any of you noticed how much I avoid answering this question???!!! It's such a hard one to answer.

At the end of this month I will have reached ONE year of continuous Lyme treatment on antibiotics, without needing to stop. I have also added in two other drugs to treat the Lyme, Malarone and most recently, Plaquenil. This time around I have been able to pace myself so that, while the herxes (periods when the Lyme toxins/die-off are at their worst) are HORRENDOUS, I can sense when I need to slow down or back off so that I do not end up in the ER. Thanks be to God. The best and closest comparison I can find is that the Lyme treatment is much like chemo in the sense that you feel like you are going to die while all the Lyme is dying off. I spend the time just trying to survive.

Last month I experienced my first real 'window' of light out of a herx reaction. It came just when I thought I couldn't endure this treatment anymore. I also reached my 100th dose of minocycline! I started last April at one dose per week and am now up to four doses per week. During this 'window' I was able to notice a bit more energy, less pain, and more cognitive clarity. It's definitely at a tortoise pace, but I do think we are finally moving forward. Patience, patience, patience.

The reason I don't often say how I am really doing? Because I still feel horrible all of the time! And I am tired of sounding like a broken record. I'm grateful to be more stable and to be able to have these visitors--yet I get so sad that having them come makes me sick afterwards. I long for a day when I feel 'human' and when each outing, even if to the doctor, is not so grueling. I still feel 'sick' every moment of every day. Thank goodness for that iPod to listen to for hours on end curled up in bed recuperating!

I don't have any trouble keeping 'busy' as I only have about one hour in the day to do things that need to get done, including email and such, so as you can imagine things pile up pretty quickly. Most of my energy goes to activities of daily living--by the time I eat, dress, bathe, etc. there is little time left for much else. I use the time after lunch to try to get what I can done--but it must be done in a reclining position! By evening, after dinner and my bath, I rest a long while and then am sometimes able to either watch a TV show or listen to a book on tape for a bit. I need a lot of recuperating time and sleeping time.

4. MELISSA. The joys have been plentiful this year, but so have the sorrows. Since finding DINET, my support forum, in 2004 I have met so many new friends--and even though we have never met in person, the lessons they have taught me about compassion, love and generosity, are amazing. They are truly friends--such an unexpected thing from what can be an impersonal internet world.

Melissa, my dearest friend that I have met through DINET, has been struggling and fighting for her life for the past few months, most of which have been spent in the hospital with recurrent sepsis infections that they are unable to figure out how to prevent from returning repeatedly. For the past couple of years she's been my 'person' (Grey's Anatomy anyone?) to check in with on an almost daily basis via gmail chat, phone messages, or on 'lucky days' when we are both awake at the same time, a phone call. We met because we both struggle with Autonomic Nervous System issues, but soon found out we had just about everything else in common too--we're two peas in a pod! I've come to love her so much as a friend, even though we've never met. If anyone has Harry Potter magic figured out, please get me there via instantaneous travel NOW! And, please, please hold her in your thoughts and prayers. Through the whole experience, we've continued to grow closer and I have also continued to be amazed by the folks who support us on DINET. I've met such amazing people on this site. Since becoming sick, I've not been able to go out and meet new friends...so Melissa and I quickly became the new friend each other so needed...and we could 'get' each other on the 'sick stuff'. Melissa is a woman of incredible faith, hope, love, courage, and grace and watching her suffer like this has been one of the most difficult experiences of my life.

A note of THANKS to all of you on DINET who email me regularly and watch out for me. Your emails mean so much to me...and I wish, as you know, that I could respond to every single one of them.

5. MOM is officially counting down to the end of her days as professor. By mother's day weekend she will be free of grading papers, preparing syllabi and lectures, schlepping the one hour commute, and all that jazz! She's ready to tackle 'fun reading', catch up on movies, and putter in the yard!

6. DAD is going to bop me over the head for putting this in here, BUT, I'm so proud of him! He had a big year this year award-wise for his latest book and now a university award as a Faculty Scholar for his lifetime contributions to his field. Go Dad!

He even had an appearance on Anderson Cooper 360! Years ago he was asked to be on Oprah and he turned it down! Now, why did he turn it down you ask? Because he said, "Who's Oprah?"!!! Who's Oprah??? Ohmygoodness Dad. So, when he found out he was going to be on Anderson Cooper he called and said, 'This is better than Oprah. Turn on Anderson Cooper.' Well, it was pretty darned cool (except that his story didn't air until the VERY end of the program) but it wasn't Oprah (sorry Dad!). He did quite well, but in his opinion he looked 'fat and like he had no eyes'. I don't think that's what people were paying attention to though--they wanted his wealth of knowledge, right? :)

7. ASHER. Anyone interested in adopting a neurotic dog?

Wrapping up:

As always, I keep saying that I am going to keep up with my blog. I keep getting derailed. I feel that I promise I will do this and that and my body just keeps not cooperating. However, I do feel this is a promise I must make a better effort to keep--not only to you--but to myself because I do really enjoy it when I am able to write and post pictures. Plus it would be a LOT easier to read if it wasn't so darned long each time around!

So, hopefully after all the 'doctoring' is over and before the next set of visitors, I will get to post a few pictures!!!

Right now, I'm needing to spend a lot of time in between 'activities' recuperating in my tortoise shell...

Thank you for understanding that I still need lots of time in hibernation mode! And, as Melissa would say, if you've made it to the end of these ramblings...CONGRATULATIONS!

Love,
Emily