Waiting for a Breakthrough

Our teeny little late-blooming daffodils.

Since starting to see Dr. Complex last October, I have blogged very little about my actual treatment plan, our trips down there, and how things are going medically. A large part of me is in a 'wait and see' mindset, wanting to give Dr. Complex plenty of time and space to try new things, learn to understand my body, and hopefully see results. My body has a lot of repairing to do, and I want to give it time to respond to the treatments. Another part of me is waiting to write until I have good news to share.


Instead, what I feel right now is terribly discouraged and scared. 


During my last phone consult with Dr. Complex three weeks ago, he asked me if I had seen any improvements since I had started seeing him. I hate answering this question, especially to a doctor who is working so hard to help me. I hate having to say that I have seen very little improvement, as if it is a criticism of Dr. Complex for not finding something to help me. It is also painful for me to even type this in a blog post. 


My quality of life may not be as low as it was during the Year of the Pajama, but it never surpasses the level of low. It only fluctuates between low and very, very low. It has, for the most part, been this way since 2004. Prior to that I had periods of some improvement mixed in with the intolerable times. Overall, I feel that my health has continued to deteriorate over the last 13 years.


When I admitted to Dr. Complex that I had not seen significant improvements since seeing him, he said that we would try for a breakthrough. He added in more supplements and medications. Over the last several months, I've been trying lots of different approaches to treating my body as a whole.

Tiny, but oh so cute. ;)

When I try new things, I tend to wait things out longer than I probably 'should'. I'm still learning how Dr. Complex operates and how long to give things a try before seeing results. This week, after noticing that I continued to see no signs of a breakthrough, I decided to check in with Dr. Complex to see if I should keep plowing ahead or we needed to re-evaluate. Dr. Complex called me personally during my very small window of 'awake' time.

When I told him what was going on, describing the crushing physical and cognitive exhaustion, difficulty sleeping, waking up feeling as if I haven't slept, weakness, difficulty sitting or standing, etc. and that I had not seen any changes since adding in the new treatments, he said: "That is very discouraging." 

He came up with other strategies, tweaked what we were doing, and suggested we discuss some other options at my upcoming appointment in a couple of weeks. 

To give you a sense of proportion.

At my last face to face visit with Dr. Complex he said: "Are there other patients who are as sick as you are? Yes. Are you in a special group within that group? Yes. You are in a special group." 


Now, in a blog post his words may sound cold or harsh, but let me assure you that they are said with such compassion, almost to the point of personal heartache himself that he cannot do more to find ways to improve my life. 


Still, I'm never quite sure where to go with these statements. How do I remain hopeful? What does hope look like in a situation like this? What is the best we can hope for? What is the balance between acceptance and hope? What is realistic? What does it mean if even the best doctors do not have answers? 


I can also feel like a failure. What am I doing wrong that I can't get better? What am I missing? What piece of the puzzle have I failed to investigate? What else should I be trying? Am I not trying hard enough? Am I not pro-active enough? Maybe I should just read The Secret and create a vision board? (Definitely not being serious on that last point!)


I can get a serious case of monkey mind. Deep down, I do know that how I feel and the fact that I am sick is not a result of something I have done 'wrong'. I don't believe in a punishing God. And I know that I have worked tirelessly to improve my life.


Sometimes I just wonder how in the world I can be this sick for this long yet have so very few answers and so very little understanding of what is happening to my body. The unanswered questions haunt me every day.


We have no prognosis. 

More of the Sundisc variety.

It became clear very early on in my illness that the doctors who did not dismiss my illness were confounded by it. As early as 2000, the cardiologist who originally diagnosed my ANS issues by tilt table test mentioned that patients with POTS fell on a scale of A-Z. I was a Z, he said. A Z he said, needed to go to a different, more experienced specialist.  In 2001 that top specialist in ANS disorders began mentioning how refractory I was as a patient. At one point, he told me that this was my life and it would not improve.  


After that I continued to pursue more answers, which led me to Dr. ANS who is, bar none, one of the best specialist in the world in CFS and ANS disorders. He, too, has felt that where he can usually find things that help patients, he cannot find things that work for me.


I share this as a frame for what Dr. Complex has said since I started seeing him. The complexity of my case is what has led to so few answers, so many different specialists, so many treatment trials. Over time the failures to improve my health and the continued acknowledgement of the difficulty of treating my case accumulate. 


On one level it is very validating to hear both Dr. Complex and Dr. ANS acknowledge how hard this is and to affirm how truly sick I am. It's a significant improvement from being tossed out the door by doctors who chose (and still choose) not to believe me or refused to treat me. But the number of times I have heard that my case is complicated, complex, and challenging have accumulated in a little box in my mind, challenging my ability to stay hopeful. It gets harder and harder to keep dusting myself off and pushing through new treatments. I definitely have my days when I think:  "F*** this" and want to just stop all of the treatments. (Yes, I use that word on bad days!) Yet, I am so very fortunate to even have access to the treatments.


Very few doctors even want to work with patients like me. I have continued to find my way to new treatments and doctors as the previous ones exhaust their arsenal of treatments to try. Early on in my journey it was much easier to say: "Well, I just haven't found the right doctor yet." Or, "I just haven't tried the right cocktail of treatments." Or, "I just haven't found that rare illness I have, but when I do we can treat it."

The last of the Birthday Bulbs to bloom.

I am terrified of feeling this poorly day in and day out for years to come. I try not to 'go there', taking things one day at a time. Right now, I'm feeling the weight of 13 years of unsuccessful treatments.


I've been avoiding blogging in part because I've just been too sick and in part because I'm afraid to share how vulnerable and sad I feel right now. 


I'm longing for a break in the symptoms and some sort of breakthrough. 


Blessings,


Emily

Happy Father's Day!

Mom took me over to Dad and Abbie's for a short visit on Father's Day. We had strawberry cupcakes with fresh strawberries to celebrate Dad. And, of course, we had to take photos. So here's a father-daughter shot. :)

Happy Birthday Ms. One-derful!

Before I start blogging about tougher stuff, I wanted to throw in some of the 'good stuff'! 

Lanadoodles just turned ONE! In honor of this milestone Sarah bought her a little shirt that said: Ms. One-derful. This past Saturday, Sarah, Bob and Ms. One-derful came over so that we could celebrate this wonderful little girl together.

Mom helped me make gluten-free, dairy-free strawberry cupcakes. (In other words, she did most of the work). We wanted to make these cupcakes because Lana and Sarah love everything PINK. 

Lana loved hearing the birthday song. Sarah brought hats and noise makers for all of us.

She isn't sure what she thinks of cake or cupcakes. 

Lana kept us all entertained by taking all of Asher's toys out of the toy boxes. She was pretty pooped out from a long week at the beach and a long day of traveling in the car. 

Auntie Em and Lana

All tired out and ready to head home for a nap. 

Lana has me wrapped around her little finger. I wish we lived closer so I could see her more often!

In the midst of this long period of feeling so poorly, it was really wonderful to see Ms. One-derful and celebrate her birthday with Sarah and Bob. I've known Sarah since I was in 9th grade and she was in 10th grade (a long time!). 

Our visit fell on the 13 year anniversary of me getting sick--June 18. I didn't want to dwell on my anniversary this year, so having our little party was just what I needed.

Happy Birthday Ms. One-derful!

Love, 

Auntie Em

A Quick Update from Our 'Herd'...

I haven't posted in almost a month, which has left some people worried and wondering how we are doing here. So, here is a quick check-in. Hopefully, I'll be back to blogging again soon. 


Last time I posted, Mom had just arrived home from the hospital. So first, the update on Mom.


Mom is doing GREAT! She is almost at the one month post-surgery mark. We are truly amazed at how well the recovery has gone. What a difference from her rotator cuff surgery and recovery. After the first couple of weeks, she was able to start driving again so she's able to go to the grocery, farmer's market, etc. We were all happier once she was 'free' again. :)


She still needs to restrict her lifting to no more than five pounds and take it easy. She certainly is not back to her normal energy level, but we expected this. She usually takes a little nap in the afternoons (while Fuzz sleeps right next to her). Her voice is still not quite back to normal and her throat still has a bit of a tickle in it. 


The recovery has been so much better and easier than we could have imagined. Still, she did not get ANY pain relief from her lower back/leg/hip pain, so she is very antsy to get the next surgery on her lumber spine.

I have been feeling very poorly, which has been disappointing to say the least. Dr. Complex is working with me to do everything he can to help me regain some quality of life. I will try to write a separate post (or posts) on that. Basically, I have had no break in the severity of symptoms lately.


Again, I've found myself using most of my energy on survival. Otherwise I try to do things that will lift my spirits. We are trying to get a StRoll in every evening (either me and Mom or me and Jeannine) to enjoy the beautiful trees, fresh air, singing birds, and prolific bunnies. Tomorrow night, I am planning to go see Jane Eyre...no matter what! 


Thanks your concern. We didn't meant to leave you all worrying (although your worry gene was correct when it come to my well-being). Thankfully, though, Mom is doing great.


Asher is starting to act like an old man, but otherwise, he is taking excellent care of us. He loves all of the napping going on here, as well as the times Mom and I watch TV or movies together in the evening. Nothing makes him happier than having his herd all in one place. :) Nothing makes us happier either. 


Blessings,


Emily