Monday Dog Blog: And Update on the Sickies

Headed to the Vet

The puppies are continuing to have a rough go of it. They are still fighting the ear infections and have been back to the vet for a stronger prescription--an antibiotic and steroid combination that we put in their ears. Tovah Rose also began showing signs of an infection in her other ear.

We'll be going back again to see our vet on Wednesday to see if we need to try something else next.

Tovah isn't ringing the bell all day long. She's not hanging outside all of the time. She falls asleep out on the patio instead of watching the world. She squeals if we bump her ear. She doesn't want to eat.

Gershwin has been sleeping a lot too. He hasn't wanted to pre-wash the dishes. He hasn't wanted to dry off my legs after a bath. 

Both dogs check on each other. Both dogs seek constant attention and comforting. 

Eating Some Homemade Food

Our biggest challenge with Tovah is that when she is in pain or doesn't feel well, she stops eating. She  couldn't even be enticed by some cottage cheese on her food. So, Mom decided to make some gourmet homemade food for the puppies, and both are gobbling it up much to our relief. They are also enjoying a snack of Farmer's Market goat's milk. 

These babies are the closest thing I have to children, and it makes me sick to my stomach to see them suffer, to feel that maybe I am at fault for this happening to them, that the groomer plucked their ears within an inch of their lives and caused this, that they could be prone to chronic ear infections in the future. 

I'm sorry we don't have better news to report on the puppies or any fun pics. The puppies haven't been up to any antics the last 2 1/2 weeks since this all started.

Blessings,

Emily

Monday Dog Blog: A Hard Week for Our Babies

Gershwin and Tovah

Well, I didn't blog last week and hesitated as to whether or not to blog this week for the Monday Dog Blog because the puppies have been miserable for over a week now.

We took them to a new groomer (whose name we had received from another groomer in town), and both puppies ended up with severe ear infections that have left them lethargic, painful and generally 'off'. A little touch to the ear results in a cry. And our Twinkle Toes has been quieter than we ever see her.

It's been a hard week for all of us. The puppies are checking on each other constantly wondering how the other is doing. Mom and I hate seeing them suffer. We're feeling awful and powerless as to what can be done to keep this groomer from hurting more dogs. I'm trying not to blame myself for not being better educated on choosing a groomer.

G and T

The puppies got the best haircut they have ever had. They looked beautiful when they came home from the new groomer. 

But, none of that has been worth the suffering and expense that has followed.

While we had explicitly told the groomer (on the intake form and in email) not to express their anal glands, she did so anyways. She claims that they were on the way to being impacted and had to be drained. She also claims that the forced air dyer will cause them to express regardless of whether she does it or not. Our understanding is that forced air dryers are loud and strong, and dogs glands express out of fear and stress in such cases.

Both puppies have problems when their anal glands are drained, especially Tovah, who sits and won't walk, doesn't want to eat, has a hard time pooping, etc. This time, Gershwin was also very irritated by the expression of the glands.

In many discussions with our vet, we have felt that the best and only place we want to have the glands expressed is at the veterinary practice and not by a groomer.

Miss T

But the worst of it all has been the severe ear infections that have left both puppies so miserable and out of sorts. 

The groomer plucked their ears. We have never had this done before, nor were we asked if this was okay. We were just told by her that the ears were a mess and had to be plucked. Really?

It's hard for us to believe that these puppies, who have been going to the groomer every month of their lives for three years and had regular vet check-ups with no documented ear issues, needed to have their ears plucked. How could their ears have been that bad? 

It is clear to us that the ear infections are a direct result of the ear plucking. We do not know if the groomer used unsanitary tools, if the plucking itself caused the bacteria to grow or what. We just know that the infections started within a day or so of the grooming appointment.

From our understanding, there is no reason that dogs who are not exhibiting ear problems need to have their ears plucked. We also understand that it can sometimes be more irritating than helpful.

Mr. G

After learning the cost of treating the infections in addition to needing to purchase Rimadyl to help with the anal gland drainage discomfort, I contacted the groomer. It is very difficult for me to be so strong and assertive. But I left my feelings out of the email and let her know that these medical issues were a direct consequence of her grooming practices and that she owed us over $200 in veterinary bills.

Of course, her response was defensive and insisted that the infections could in no way be a result of her grooming process. She also insists that the anal glands had to be drained (this may be true, but we ask that this only be done at the vet's office). 

She offered no compensation for veterinary bills, assumed we would continue to move forward with her as our groomer and offered no free grooming. 

Miss Bright Eyes

Why would we ever take our babies back to her after such an experience? 

Feeling Like Crappola

I have posted about our experience on Facebook and received an incredible outpouring of support and help. I'm humbled by how many people understand and empathize with seeing our fur babies suffer.

I have talked to others as well about our experience and continue to hear many negative things about this groomer.

I received an email from her today ordering me to remove her name and my post from Facebook or her lawyer would be in touch with me. I don't think she can insist on this from me?

Not Cooperating!

Right now, we are just busy nursing our babies back to health and trying to figure out how in the world to respond to her emails. 

I am learning a very hard lesson in a very hard way. I didn't realize that the puppies could be harmed or get so sick from taking them to a groomer, especially one referred by another groomer in town. I didn't think about how we literally place our dogs in their care and have little say over what they do. This is very scary.

From now on, we will be returning to the groomer at the veterinary practice where we took Asher for his whole life and he was very happy. The only reason we hadn't continued there is because the puppies have to be there all day. 

But that is a small price to pay for knowing that they are in good care and that if anything should go wrong, the fact that the groomer is at a veterinary practice hopefully means we are more protected if anything should happen.

G and T

I want to thank everyone who has been so incredibly thoughtful, tender-hearted, and helpful during this process of trying to figure out how to handle the situation. You've been amazing!

We hope our babies start to feel better soon and are back to their old playful selves. We've hated to watch them suffer so unnecessarily.

Next Monday, I hope I'll have a more uplifting Monday Dog Blog, but I did think it was important to share that things have been rough for these two little loves.

Blessings,

Emily

Happy Birthday Dad!

Happy Birthday Dad!

Shhhh, I won't tell anyone how old you are! No one will guess anyways because you look younger than you are. :)

Dad is a hard guy to find a gift for, so I decided this year now that I am feeling better the best gift would be that of time and a meal together. We enjoyed a seafood buffet (lots of crab legs were eaten!) on Friday evening at one of Dad's favorite landmarks in town.

It was so nice to be able to GO OUT and celebrate together!

A very very very happy birthday to you, Dad. 

Thank you for being loyal, protective, smart, funny, supportive and 'by my side' through thick and thin. Thank you for all of the hard work you have put in to make sure that I can have things that would otherwise be financially impossible--especially the continued medical expenses that seem never ending. I know you have sacrificed a lot to make sure I have everything I need. 

Know that you are appreciated and loved, and that I hope this year is one filled with good health and many blessings.

Love, 

Champ

CFS Funding: Cut COMPLETELY From CDC Budget

One of My Bed-bound Years (2010)

I have spent 17 years with CFS and Dysautonomia. I have spent endless minutes, days, weeks and months in bed or reclining, unable to leave my house except for brief outings or appointments. I have suffered more than I ever thought imaginable. I still spend a lot of time in bed. It's hard to look at these photos of myself from years past, but it's a stark reminder of how this illness has affected me and my family.

People with CFS have a lower quality of life than those with many other chronic illnesses, and it is estimated to affect at least 1 million Americans, many of whom get sick during adolescence. 

Research is already limited and mostly relies on philanthropy. Precious few doctors have the knowledge or willingness to treat CFS patients. 

It's incomprehensible to me that, to begin with, federal funding for CFS in the current CDC budget was set at only $5.4 million. 

Now, CFS funding has been completely stricken from the Senate's 2016 version of the federal budget.

Really? No money for CFS? At all. 

It's the only disease for which funding was cut completely.

If you feel compelled to try to change the situation, please do so this week by participating in this email campaign to ask that federal funding be reinstated. 

I realize that we are all overwhelmed and busy, so I don't want to pressure anyone to do this. I do want to make people aware of the lack of funding, and give you the opportunity to participate if you are so inclined. 

Thank you in advance!

All of the details are below.

Blessings,

Emily

Smiling, but Still Mostly Reclining and Homebound (2012)

Please address your email to the following four staff members that serve the Senators on this particular budget committee (just copy and paste):

Laura_friedel@appro.senate.gov; Chol_pak@appro.senate.gov; Alex_Keenan@appro.senate.gov; Lisa_bernhardt@appro.senate.gov.

Here is a sample email for you to send. You can choose to/not to add to it.

Dear Senator:

I am writing to urge you to reinstate the $5.4 million for Chronic Fatigue Syndrome funding. This is included in the CDC budget under Emerging and Zoonotic Infectious Diseases, on Page 59 of the Senate Budget.  
I understand that the $5.4 million in funding submitted by the Centers for Disease Control for Chronic Fatigue Syndrome has been stricken from the 2016 appropriations bill by the Senate Appropriations Committee. This is an appalling act of inhumanity, and I urge you to reinstate the $5.4 million amount into the 2016 budget without delay.

As you may be aware, the prestigious Institute of Medicine of the National Academies published a landmark report on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome on Feb. 10 of this year. The IOM committee unequivocally and scientifically established that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a physiological, not psychological, illness. The IOM stated firmly that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is “a serious, chronic, complex, multisystem disease... In its most severe form, this disease can consume the lives of those whom it afflicts.”

The IOM committee further established that between 836,000 and 2.5 million Americans suffer from this devastating disease, which carries with it an economic burden of $17 to $24 billion to our country annually.

I am one of those Americans who has had their life and livelihood stolen by this illness, which renders 25 percent of us house- or bed-bound at some point. While the vast majority of us are not well enough to march on Capitol Hill to demand equitable funding from our government, rest assured we are still able to vote via absentee ballot.
As a member of the Senate Subcommittee, I urge you to reinstate this $5.4 million CDC funding immediately. You have an opportunity to be on the right side of history.

Sincerely,
Name
Email address
USPS address

Here is a link to the page where I am getting my information:  http://solvecfs.org/cdc-letter. 

The Solve ME/CFS Initiative is an excellent organization. Dr. ANS has worked closely with them for many years and received funding from them. The Solve ME/CFS Initiative was the first organization I had available to me when I first got sick.

Monday Dog Blog: The Graduate + Ice Cream Socials

Gershwin 'spoons' Tovah

Whew! We sure have been having a busy summer. By Saturday night, we snuggled up together and didn't want to move!

I, Gershwin, graduated from my Foundations in Agility class! I even got a certificate. I'm a star! Tovah came along to watch me graduate, and Mom checked to see if she still remembered the agility course from her time taking the class. She didn't. Uh-oh. That means she is going to have to take the Foundations class all over again. 

I enjoyed this class so very much that I am considering taking the Intermediate class this fall!

We celebrated with an outing to our local pet store where they were having a Dog Ice Cream Social (they do this every Friday in August). It's super fun and this was not our first time at this event.

I, Tovah, am just not sure about the ice cream though. It's yogurt, peanut butter, banana and honey and Mom, Mommy and Gershwin can't understand why I don't devour it.

Mommy even spoon-fed it to me while my little brother tried to steal MY ice cream!

I'm such a dainty little flower.

We saw our friends Marge and Dessa there.

And Shirley too. She made a beautiful portrait of Asher that Mommy plans to post on the blog soon.

As you can see, this ice cream thing is a messy ordeal!

All that socializing with people and dogs, all that learning and training at agility and a few long walks with Mom this week left us pretty pooped out by Saturday night. I must be tired if I let my brother snuggle up with me like this!

Happy Monday!

Blessings,

Tovah Rose and Gershwin

Monday Dog Blog: Mr. Agility + Birthday Celebrations

On My Toes At Agility Class

Hey! It's Gershwin here.

Ready to Roll!

I've had a pretty eventful month and I'd like to tell you about it!

Birthday Loot

First of all, we celebrated my birthday. And, boy, did I get a lot of good loot!

Mommy is a little sad that I'm not as interested in opening boxes as my big brother Asher was, but I did have fun opening my presents.

I was really interested in this toy called a HydroFetch.

But then, when Mommy hooked it up to the hose and turned it on, I wasn't too sure about it.

Post-Play in the Hydro-Fetch

She told me that if I can swim in the ocean, I can surely play in the HydroFetch. So, I gave it a shot one evening when it was super hot outside.

Sometimes, I can be a bit timid or balk at objects. My sister is braver. So, Mom and Mommy thought it would be a good idea for me to take an agility class where I have to deal with new surroundings, other dogs, and all sorts of obstacles to jump through, go over, and walk on. 

I absolutely LOVE going to agility class, and I have been so very brave about all of the obstacles. I concentrate so so hard the whole time, that when I arrive home I am EXHAUSTED!

Mommy got to go along and watch one evening, and she loved seeing me shine.

I mean, do you see this A-frame?! I went over it! I also go through the tunnel, the barrel, the ring, over the planks, into the hula-hoop. 

I Can Do The Whole Course!

Mommy and Mom are so very proud of me!

In addition to all of this, Mommy and Mom went out of town for four nights and Tovah and I got to stay with Kierny. He took such good care of us, Mommy was afraid we wouldn't want to be home. But as you can see, we were happy to be back at our place with Mom and Mommy.

Waiting for Mommy to Come Back and Snuggle

As you can see, I've had a busy and fun summer!

Happy Monday!

Blessings,

Gershwin

"Your Life is Your Work", A Week 'Off' and Other Thoughts On Illness to Wellness

Monarch On Cone Butterflies At The Cabin

Going from illness to wellness as quickly as I am is a massive and radical life change. 

Falling in love and being in a relationship is a massive and radical life change.

Having both of these things happen simultaneously is at once exhilarating and overwhelming.

My body--all of our bodies--doesn't know the difference between eustress (good stress) and distress. We feel them all the same. Which means my body is a little tired right now.

I found myself in counseling recently remarking that I felt really tired and overwhelmed again. When Evelyn was able to put into words that my life is changing in massive and radical ways--each one of which would be a big deal alone--I understood why I was overwhelmed and tears welled in my eyes.

View From Our Deck

My PT, Ryan, came back from a training session with my Dr. ANS and a PT he has worked with for many years on how to do very specialized techniques on me. 

Ryan asked the PT: "How do we help her to get her strength back after so many years of inactivity?"

Without pausing, the PT said to Ryan: "Her LIFE is her work."

Think about those words.

They are powerful.

For all of us.

Massive. Radical. Life is my work.

These are the words playing over and over in my mind these days. These are the changes and processes I am going through, trying to find my way day by day.

Cone Flowers

What does it mean that my life is my work? 

Almost every day of the week, I have an appointment that is related to maintaining or improving my health--massage, acupuncture, PT, counseling, medical appointments, etc. I also have a lot of things to do every day at home to maintain my current level of functioning and improve it. I'm also trying to do more and more things for myself that I didn't used to be able to do, as well as take the time to get dressed, put on make-up and do my hair most days.

I am busy all of the time. I struggle to find time for leisure. I struggle to find time to get things done that need to get done. I spend a lot of time and energy on my new relationship because I think that matters a LOT. And I forget to relax and BREATHE.

In this sense, I'm like my healthy friends and family. Overwhelmed. 

Butterfly Magnets!

After Ryan heard the words that "life is your work", I felt a major shift occur in his thinking about what I need to do and how I need to focus my energy. I saw him for the first time completely understand that living with chronic illness is a full-time job. 

He also helped to affirm that the way I am working to improve my health--by engaging in more outings, being more active, working to be more independent--is the way to continue to regain strength and energy.

Neither he nor the PT he met with want patients to be using more energy to do a bunch of exercises at home.

They want LIFE to be the work.

View From Our Deck

Letting this phrase sink in a bit, I realize that this it's not just relevant to my healing process, but to how I live my life overall.

Life itself can be our prayer. How we live it every day, how we interact with others, how we view the world, how we engage with the world, how we spend our time, how we use our precious energy--this is our work and our prayer.

Queen Anne's Lace 

My work right now is to continue to do all that I can to be more independent and more highly functioning and to engage as fully as I can in life. And oh, the thousands of ways I want to engage in this LIFE!

I know many people are asking me or my parents this: Can she work? Can she do a computer job from home? When will she be going back to work?

Let me get this out in the open. Going back to work in any capacity is NOT a goal that is in any of our heads right now. It's not realistic in any way at this time. I still sleep a lot, I still can't focus to read, and I still don't do my IDL's like grocery shopping, laundry or cooking. We are focused as a family on what will give me the best quality of life and on continuing to improve my health--not on getting me 'back to work.' I don't have a 'lot of time on my hands'. 

Native Butterfly

Ryan began to hear me say how tired I was when I came in to see him on Monday afternoons. This meant we really had to back off of the PT.

He said to me: No one every expected you to get better. First, you were the most refractory patient who nobody knew what to do with. Now you're improving in ways no one ever expected. You're a pioneer in this. Dr. ANS should write a case study on you!

In light of this, he said, we really don't know what kind of cumulative effect continuing to push so hard is going to have on your body.

I LOVE Where We Live

He proceeded to give me the best prescription ever!

Ryan told me to take a week off from any appointments and try to get some rest.

Beautiful Farm We Drove By

That is exactly what I have been doing since last Friday.

Mom and I rented a small cabin about 30 minutes outside of town where we RESTED. Truly rested.

We spent four nights there!

We ate and slept. Mom read. I colored and sewed. We went out to eat dinner one night and out to lunch one afternoon in a small town nearby. We did a little shopping at a quant little shop. We sat out on the patio and looked at the mountains, sipped wine, and unplugged. 

I did not check my email or do any texting. I only checked my phone ONE time each day to check in with Kiernan. We talked on the phone each afternoon. He sent me lots of texts and pictures to update me on the puppies.

Phone. Turned Off. It felt great!

Isn't it amazing how we could all take time to sit on our own patios and read, rest, meditate or just 'be', but we so often don't because we're thinking about our to-do lists and the piles waiting for us inside the house?

We were so excited that taking an impromptu vacation to a place that didn't necessarily fit all of my needs was 'doable' for me. It gives us so much more flexibility in terms of travel.

I've used the time since our return to try to get some things done around the house that have been piling up. I've tried to tune in more to the puppies. I'm taking some time to write. I've done some cleaning and organizing. I'm not sure how I feel about returning to my faster pace on Monday. 

Ideally, I need to find ways to carve out time for writing again, for listening to audiobooks, for watching a TV show, for having some time at home to work on projects that I really long to complete.  I long to do things here that haven't been done for 17 years. 

Because all of my afternoons are taken up by appointments, I am not able to get blocks of time to write or work on things at home, which has lead a lot of stress.

How did I so easily let things that were routine parts of my day--an hour of TV, an hour of an audiobook--slip away? 

It's so easy to get caught up in the new freedoms of improved wellness that I find myself trying to squeeze something into every second of the day. TV used to be a necessity because I didn't feel well enough to do anything else. Now, I often do feel well enough to try to do a little something else, and don't carve out the time for my body to relax. 

Not carving in time to calm my ANS and quiet my mind has left me highly anxious, stressed and overwhelmed. Not taking down time is likely not sustainable, and possibly detrimental to my healing overall. I need to remind myself that I still need rest, that resting is not equal to being lazy, and that engaging in activities I enjoyed when sicker, such as TV or audiobooks, doesn't mean I'm regressing health-wise or cannot be reframed as activities to enjoy whether sick or not. 

We all struggle with balance. I'm not saying that I am any different than any other human being living in today's very busy world. I'm just coming from the perspective of being a person going through the process of going from illness to wellness after 17 years of only knowing illness. 

I didn't understand the ways in which improving health would be so challenging and, at times, stressful. Most of the stress is eustress--the good kind of stress--but there's distress too. The same goes for falling in love--lots of eustress--but sometimes distress. 

Like the fog clearing on the mountain tops in the photo above, I know my mind and body will find their own clarity. My mind and body will find ways to embrace this new life, these massive and radical changes in healthier, less overwhelming ways. I'll figure out where my energy needs to be focused, and I'll continuously be trying to readjust to accommodate my health.

It's a process I feel fortunate to be part of. It's a process I never thought would happen. Yes, going from illness to wellness is sometimes very hard. And so is falling in love. 

Yet, I wouldn't change them for the world. Not at all.

LIFE is my work.

I am very very blessed.

Blessings,

Emily