One Cool Visit: Carrie, Sam and Nephew David

I'm still flying high (although exhausted) from seeing Carrie, Sam and Nephew David over the weekend.  They arrived Saturday evening just when the heat wave finally broke. We were so excited to go out after dinner for a StRoll. 

After a long day of traveling and hair full of mustard, it was time for a bath. I can't believe how much bigger David is compared to last time he was here for bath time.

We hung out and watched 'The Show' (The Muppet Show), which I haven't seen since I was a little kid, before David's nap Sunday afternoon. He napped for 2 1/2 hours!

During David's nap time, Sam relaxed with a good book and Carrie and I got in some much-needed girl time. She even painted my fingernails for me while I reclined! I felt so pampered. Every time I look at my pretty painted finger nails I think about our lovely visit.

Nothing is the same as being together in person to have meaningful connection with friends. What a HUGE blessing to have 2 1/2 hours together just to talk about anything and everything, catch up on things we don't have time to over email, or discuss more intimate things that are hard to capture in email.  Having this kind of time with my closest friends is something I miss tremendously.

Time for some goldfish crackers and apple juice with Dad after nap time. Just as David was waking up I was heading to my nap. The biggest thing that made this visit go more smoothly than usual for me was that I actually slept the night before they got here, the night they were here, and napped. Usually, my ANS is so wired I can't sleep and I'm struggling even more to get through a visit.

I tried to savor the time I did have with them, rather than feel sad about the amount of time I needed to spend resting to enjoy the time that I was awake. 

Carrie and Sam are so low-key and easy to have as visitors. Mom cooked up an amazing menu of foods all fresh from the local market, so we ate quite well.  Thank you Mom! And no, I don't have a single photo of her from the weekend! Darnit!  

Carrie has been here so many times over the years and seen me really sick, so I am learning with each visit to let go more and more. To accept what is, and not resent what is not. I know that Carrie will accept me in whatever state I am in when she arrives. And since she has been here so many times, she knows where everything is and the routines of my sleep, naps, eating, etc.  This really helps me to let go of my desire to be a 'hostess' and just let her come visit and spend time with me.  I haven't quite gotten to this place with any other overnight guests yet!

Dave-O loved his new Fozzie bear that he got before the long car ride here. David is such a bright light. He is confident, content, social, smart as a whip, cute as a button, and incredibly happy, joyful and well-loved. It's so much fun to see how his personality has bloomed since his last visit here. 

One of his favorite questions? Ask him if you are "Cool" or "Nerdy". He will giggle and shout "Nerdy!" It seems we're all nerdy, and no one is cool!

He is also a charmer. Still. Just like he was when he was here at seven months of age. 

When you ask him to say "Cheese" and smile for the camera he likes to look at the picture on the camera to see how it came out! 

How can one not feel happy with this little guy around? My heart absolutely melted when he arrived and said "Aunt Emily". I loved hearing "Aunt Emily" all weekend long! Carrie and Sam have made such an effort to make sure that, even though I don't get to see David often, he knows all about his Aunt Emily. This means more to me than I know how to express.

The farm animals and wooden puzzles Mom got from the library were a BIG hit. Here he is posing with the cow. He thought this picture came out quite well.

Given how I have been feeling I could not have asked for a better day with Carrie, Sam and David. I did better physically than I could have ever even imagined I would. My body really rallied. I had had an abdominal migraine a week before they arrived, and had been having a great deal of trouble recovering from it. But I finally did, just in time for their visit. 

I think, given my energy level, I had just the right amount of time with David, but we really didn't overlap much with his awake time and my awake time. I would have really liked to have had some time with him just to play and do puzzles, but I didn't get that.

It is very hard to get David to look at the camera long enough to take a photo! Sam caught this moment with David sitting on my lap in The Rolls. I love it because I think it captures how happy I felt. This year I've struggled just to find some sense of peace and contentment. During this weekend with Carrie, Sam and David, I experience feeling joy and feeling happy. Amen!

Having such a wonderful visit can be bittersweet. I know I won't see Carrie, Sam and David next summer, so it may be two years before they are able to come again. So, unless I can travel there, I will go quite a long time without a cuddle and kiss from David or a hug and face-to-face talk time with Carrie. After they left, I just cried because I miss my closest friends soooo much and I hate being so far away from them. I hate that I have to miss out on so much!  I already knew I missed Carrie, Sam and David but after such a wonderful weekend I think I miss them more now! 

Still, I wouldn't trade those 24 hours with them for the world. What a sustaining way to start heading into my next big Lyme battle with the increased Rocephin.

This might just be my favorite picture from their visit--our Sunday evening StRoll before we put David to bed, and spent our last bit of time together before they headed out Monday morning. I never heard them leave, but at some point I remember waking up to the joyful sound of David's feet pounding the hardwood floors as he ran through the house. 

David loved riding next to me in his stroller. He didn't last too long on my lap in The Rolls though! 

Carrie, Sam and David: Thank you for the blessing of your visit. How can I ever thank you enough for the gift of your time, your friendship, your love, and my nephew? Thank you for the joy and love you bring to my life.

According to David, we may all be nerdy, but that was one cool visit!

Blessings,

Emily

Photos: Lots and lots of photos from the absolute highlight of my year!  Starring Sam, Carrie, and David.

38 Weeks...

Yesterday (Tuesday), I marked 38 weeks of treatment on the IV Rocephin. I had actually lost count of the weeks. 

I also increased the dose for the first time since April, from 1 gram daily to 1.25 grams daily. Once the dose is higher than 1 gram, instead of being able to infuse it with a five-minute push, we have to use a small bag filled with the Rocephin, hang it from a pole and do a 30 minute drip. It's not a big deal, but definitely more time consuming. 

I'm feeling a bit mixed about reaching 38 weeks because the plan was to do one year of IV antibiotics. The ideal dose is 2 grams daily and I'm not in any way close to reaching that dose before we would stop treatment 14 weeks from now. 

Still, at this increased dose I should be able to tell those little spirochetes to look out! As my cousin said: "I hope your body tolerates the change and the spirochetes don't!" Or more strongly put by a friend on Facebook: "Bitch-slap those spirochetes!" (Usually I go more for images of healing light and all that zen stuff, but I kinda like feeling a little martial-artsy about kicking some spirochete butt. :))

I'm already feeling the dose change, on top of recuperating from a visit with Carrie, Sam and my nephew David over the weekend. I LOVE these pictures of David watching "The Show" as he calls it. He is only two, but he is absolutely obsessed with The Muppet Show. He's allowed to watch an episode before his nap and before bed (and I got to cuddle with him while he watched! :)). 

He is so intense and so into "The Show". What do you want to do David? "Show!" 

You can wave your hand in front of his face like a windshield wiper and he doesn't even notice. I think this is about how I was all day yesterday! I watched three episodes of Gilmore Girls in one day. So, I thought these photos were fitting because I think I look a lot like David while I bond with the TV. Just not as cute as him!

In between my bonding with the TV while I get through this dose increase, I hope to still blog a bit, especially about my WONDERFUL visit with Carrie, Sam and David!

Blessings,

Emily

Photos:  David watches "The Show" in my bedroom with me and Sam. Poor Sam and Carrie have seen the episodes soooo many times at this point! And I found a new fun show to watch.

Staying Cool

Last night, Asher decided the best way to stay cool was to lie next to the air conditioning vent in my bedroom. I love how he's underneath the curtain with his nose sticking out!

On Tuesday they were paving the road in front of our house and the temperature was in the 90's. I was extra grateful for home care that day. How exactly would I have gotten to the car parked far away when there was no where to use The Rolls? And in that heat? Thank goodness I didn't have to try to get somewhere in the heat!

Here's hoping this heat wave ends SOON!

Blessings,

Emily

Emily and Emily

Two weeks ago, I saw my childhood friend Emily for the first time in 11 years! She kept me company while I was eating dinner and we got caught up on the many changes in her life since I last saw her.


She used to live in the neighborhood here and we spent many summer days playing in our yards, 'choreographing' routines to songs we played on the Boom Box, roller skating, playing tennis in the street, etc. 


In those days she knew me as Erin, but remembered that I had always liked my middle name better.


These are the times I am so incredibly grateful for Facebook, as I had no working email address for her and no longer knew her last name (since she married). She found me on Facebook (Hooray!) and we texted back and forth to work out a visit! 


Thank you so much for visiting Emily! I'm so grateful that I was up for a short visit that day! Hopefully we will see each other on a yearly basis now, as she brings one of her family members to a camp nearby each summer.  Maybe next year I'll be able to meet her husband and kids too, but that was just too much this year.


Blessings,


Emily

Photo: Childhood friends, Emily and Emily. :) If I had more energy and knew how to do it...I'd love to find an old picture of the two of us and scan it in to my computer! She looks the same, I think!

Rebekah and Mr. Serious...

Hello! Look who got to visit! Rebekah and Kale were here over a week ago and I'm just getting photos up. As always, we continue to aim for once a month visits, but we don't always manage to do that.

I have re-named Kale Mr. Serious instead of Mr. Happypants. He is such an observer and always so, well, serious! This box of Kleenex kept him entertained for much of our visit. He just shredded a couple of kleenex and was perfectly content.  We DID have toys for the little guy, I promise.

I decided it was time for a 'light post' after my blogs of late. I've had some 'better' days lately (excepting two abdominal migraines. Boo!), which I think are due to the fact that it has been quite a while since I increased the Rocephin. It is good to see that I do eventually come out of a herx to some degree. I can't say I'm having 'good' days, but it is much better than the intense herxing.

As you can see this is also one of Kale's new favorite 'tricks' since I last saw him. Saying 'hello' and answering the 'telephone'. 


It is always such a great day when I get to see Rebekah and Kale. 


Blessings,


Emily


Photos:  Kale answers the telephone; Kale finds the Kleenex box to be the most interesting 'toy' available; 

Stress

As I get ready to 'mash' the publish button in blogger, I'm feeling stressed about publishing this post. It's quite vulnerable, long, and a bit repetitive I fear. Yet, isn't it ironic that I just finished writing about reducing stress and I'm stressed about the post? Here goes, before I chicken out again!

On Monday, I had my first follow-up appointment with Dr. Neuropsych Lyme, a twenty minute phone consult which went really well. (I still have to blog about the initial appointment!).

As we were discussing the recent medication changes, my anxiety and depression levels, sleep, etc. Dr. Neuropsych Lyme broached the subject of stress in my life. I mentioned that I always feel stressed. I'm always overwhelmed. 

What I got was a strong case for really figuring out how to reduce stress in my life if I truly want to improve my body's ability to heal and recover as much as possible. It is the first time a doctor has really laid this out for me so strongly. I have Jeannine telling me day after day that I need to be better at finding ways to reduce stress, but of course, until it came from Dr. Neuropsych Lyme I didn't 'wake up'.

Dr. Neuropsych Lyme suggested that I rearrange my life in a way that I am not so stressed. Put things on hold. Don't take on any new challenges. These are some pretty big things!

Stress directly affects our immune system making it more difficult to focus on healing and recovering. He said I need to reduce stress so that I am not fighting a battle on two fronts, and can focus on the latter.

He noted that one tendency of chronically ill people is to focus on stressful things right before bed. All day long our bodies are on sensory overload from sound and light, so when we get into bed and have some quiet time, we tend to start thinking about things. How true this is! So, I need to find better ways to keep myself distracted, come out of the state of hyperarousal, and turn off the mind, body, and brain!

Also, because of the hyperarousal of my ANS, it is easy for me to go into a high stress mode, but very difficult to wind down from a stressful event.

It is also very important for me to get restorative sleep because lack of quality sleep also depletes the immune system.

Now, what Dr. Neuropsych Lyme said isn't rocket science. I know that stress makes me sicker. I know that people with chronic illnesses need to avoid stress. But I tend to minimize this aspect of healing.  

Recently one of my closest friends, who has known me both before and during illness, wrote: I know that you sometimes de-prioritize your "rest" or time that should be focused on medical stuff to stay in touch and reach out. And, I know that even when you aren't actively reaching out that you are using up your mental energy thinking about your friends (and even worrying for them). 

How do I reconcile this? It's a compliment to me to be 'this person'. It's part of my identity to be this way. I love, love, love that she feels I'm always there for her even during my illness. But it is also a wake-up call to me that I can't keep being the 'old me' and find a way to best heal. 

Since these conversations with friends and Dr. Neuropsych Lyme, I've been doing a lot of thinking (and trying not to do it all at bedtime! :)):

What makes me stressed?

What can I still do even when I feel crappy that I enjoy? Or that decreases stress?

How can I nourish myself and still nourish my relationships (which are the most important thing to me)? How can I continue to be compassionate, loving and supportive of others yet not compromise my own health?

How do I let go of guilt?

How do I stop feeling selfish when I'm spending all of my time 'taking care of myself'?

I don't have answers to these questions yet. Still processing it all. But I feel like I got a 'prescription' for reducing stress. One that is just as important as taking my other little pills every day. 

Stress is universal to all of us. Unfortunately it affects those of us with chronic illness even more deeply. Both good stress and bad stress can make me sick. (This really and truly sucks!) It's an incredibly frustrating added limitation to the already countless limitations of chronic illness. And I think I speak for most women when I say we have a very difficult time putting ourselves first without feeling guilty or selfish! (My mom does not serve as a good model for taking care of oneself! And she would readily admit this.)

It is very easy to de-prioritize reducing stress. It feels like less of a necessity than calling in that prescription refill or trying to get insurance coverage worked out. 

For me, being sick feels very selfish. (And this is a theme I hear a lot from others with chronic illness.).  I already require a lot of care from others. I don't contribute financially or physically to the household or to others. So, the only thing I know how to 'do' is to over-compensate emotionally, often at the cost of myself. 

Just the word 'doing' is so strongly emphasized in our society. I come from a family of 'doers', not 'be-ers'. My mom grew up with the messages that: Life is hard. Life is work. For my dad, his mother was the hardest working woman he has ever known. (And boy was she ever raising sixteen children!). 

People are so incredibly generous and loving to me, that all I want to do is be able to give back to the world. I fight against my limitations constantly, rather than accept them. I come by my desire to be a 'doer' naturally.

On Wednesday afternoon, I took my prescription for reducing stress and reclined outside on the porch in the beautiful weather. I listened to some of a book on CD. I painted my nails for the first time in a year. That evening I watched a movie. 

It was all I could do to not feel guilty that my mom was at work missing the nice weather because she has to support me financially and can't retire yet. It was all I could do not to feel selfish for indulging in self-care and not spending time doing something to 'contribute' to the world around me or support a friend. 

And seriously, what is up with that? I would never judge my friends the way I judge myself. I'd tell them: Hooray for you! Enjoy! 

Still, I feel like all I do is take care of myself as it is. So to spend the parts of the day that I'm not engaging in managing my health knitting, blogging, listening to a book, etc. feels like I just get to sit around and leech off of others all day long. Yet, I'm doing all of these things while feeling like crappola! It feels overly indulgent, even though it is literally a necessity for healing.

I've spent my entire life hearing that I'm selfish. I heard it from my parents. I heard it a lot as an only child. "Oh, you're an only child," people would say. "You must be spoiled. You must be a brat." Was I spoiled? Probably. But that doesn't mean I'm a brat. 

So when I think about stress and reducing it, it becomes much more complicated than saying no to my inbox, or no to a visitor, or no to a fellow Lymie who is seeking support. I'm being forced to face the fact that stress is a huge contributer to my wellness, and I can't keep minimizing it. I'm being forced to face deep-seated beliefs about myself. I'm being forced to accept a part of my illness that I have, in all of these 12 years, been unable to do: that I can't be what I want to be to everyone in the ways I was before illness. 

My grandmother may have been the hardest working woman I've known, but she was also one of the kindest and most compassionate women I've ever known. What I remember about her as she aged was her struggle to not 'do' as much and spend more time being. She spent many hours a day in prayer. I admire her greatly for her endurance and hard work, but I also admire her greatest gift to her family: keeping them connected through love. And making each one of us feel loved. What I loved most in her was kindness, compassion, and love.

I feel guilty about not being able to be there for others the way they are for me. I feel guilty about taking so much from my parents emotionally, physically and financially. I think I have enough Jewish and Catholic guilt to cover for several people. Guilt, too, is a word I hear from my friends with chronic illness. And it is a true waste of our mental energy.

Of course, one of my biggest sources of stress is the medical maze of insurance and coordination of care. Dr. Neuropsych Lyme had great compassion for how difficult insurance companies make things for people with chronic or complicated illnesses. And Pennsylvania is a difficult state insurance-wise.

I may not be able to get rid of much of the medical stresses that accompany chronic illness, but I can find a new balance, find ways to better accept my limitations, find ways to engage more in activities I enjoy when in the moments I'm not just 'getting through' the day. For the foreseeable future, living with chronic illness will continue to be my full-time job. And it's a crappy 24/7 job. Lately, with all of the battles for home care, out patient port access, trying to figure out the next steps Lyme-wise after our trip to NY, I was so exhausted mentally, that it was all I could do to watch some fluffy TV at the end of it all.

In the midst of this 'job', I'm determined to find new ways to be less stressed so that I can give my body, mind and spirit the best possible environment for healing and recovery. Tips, especially from those who are sick and unable to engage in the typical stress-reducing activities, are welcome. I'm thinking Netflix? :) I've also been adding in some very, very quiet supine yoga (I'm a pro at corpse pose! :)). I just might start painting my nails regularly. And I'll keep watching fluffy TV, listening to good books on CD, and hanging with Mr. Fuzz. Oh, and I think I'll pick up my knitting needles again. Discover some new beautiful, healing, lovely music.

That sounds like an excellent prescription! In fact, I just wrote an Rx for each of you!

Thank you for continuing on this difficult journey with me as I struggle to find a my new balance and accept my limitations lovingly.

Here's to learning to chillax!

Blessings,

Emily

Photos: Grasses in our yard at sunset.