A Mom Update

Nap time! See how Asher finds any available bit of blanket to lie on? 

About 7 weeks post-heart attack (early January), Mom said she felt like herself again. She started to have more energy and stamina, and stopped needing a nap every day after her cardiac rehab.

Still, she's been on quite the medical journey since the heart attack. I have been learning how to navigate having my caregiver struggle with health issues. And she's certainly not enjoying spending her time going to the doctor! But, I'll keep this post limited to the nuts and bolts of things.

We finally found the source of her anemia: a deep round ulcer. So far this year she's already had a colonoscopy and an endoscopy. So much fun! Her colonoscopy showed some diverticulosis, but was otherwise fine. The endoscopy showed a lovely ulcer that has probably been the cause of her anemia for quite some time. (Again, why didn't her PCP say anything to her about her anemia when it first showed up over a year ago?) The ulcer is likely due to long-term use of NSAIDs for arthritis and stenosis.


During her endoscopy, Dr. GI also found grapes and blueberries in her stomach from her previous night's dinner. :P This is a sign of gastroparesis (which I have from the autonomic issues), but we do not know what is causing it for her at this point. 


We both have the same cardiologist and GI doctor now! :)


So far the ulcer has been giving her a lot of problems: severe waves of pain and nausea, loss of appetite, lots of indigestion, and symptoms that keep her awake at night. We are eating a bland diet, but everything still talks back to her! We are not sure what symptoms may be from the new medication to treat the ulcer and which may be from the ulcer itself. She's going to try a different medication, and see how things go.


The diagnosis of an ulcer does explain some of the things that have been going on over the past few months. The hardest part for me is that the symptoms mimic those she experienced when she had her heart attack, and  it feels impossible to know when to be alarmed and when not to be.


Mom's biggest frustration and limitation has been PAIN. She is eagerly (as in counting down the days) awaiting getting an epidural of long-acting steroids on Friday. The pain relieve should last her for at least a couple of months.  We were both incredibly relieved to find a pain specialist and a treatment option while she waits to have surgery later this year. Plus, it is so not heart healthy to be in so much pain!


Her sciatic pain (caused by the lumbar stenosis) makes it incredibly difficult for her to stand for any period of time without being in pain. She's been using the carts at the grocery stores, keeping errands to a minimum (and coming home and collapsing into the recliner when she gets home), and struggling to get dinner and dishes done each day. She is also terrible at sitting still and resting! (I come by this 'issue' honestly!)

Hopefully this will relieve the pain, and help her to manage until she can have the necessary surgeries to actually deal with the underlying issues: spinal stenosis. We really wish we had known about the option of an epidural sooner, but again, we were left to navigate what to do on our own. 

In May, Mom will have her first major surgery to relieve the pressure on her cervical spine. She is in a precarious situation, as her spine is so compressed that any small injury or fall could cause serious and permanent damage. In August, she will have another surgery to relieve the pressure on her lumbar spine which is causing her the leg pain, weakness, etc.


Between the two of us, we are quite a pair, and we are in for quite a year! I hate watching her go through all of this, and I struggle to find ways to be helpful and nurturing to her in the many ways she is to me. My role is pretty much that of Noodge! (Mom, did you call the doctor? Mom, did you hear back from Dr. GI yet? Mom, did you schedule an appointment yet?) 


I just want her to feel better and to get through the surgeries!


After that, we are going on VACATION!!!!! A very, very long one.


Blessings,


Emily

Rebekah and Mr. Snuggles

Rebekah and I enjoying our Thai lunch. Kale is not so sure about things yet.

Two of my favorite people came for lunch today. :) Rebekah and I are trying to squeeze in a couple more visits before Baby #2 arrives.

Where is your belly button, Kale?

It takes Kale a while to warm up, but once he does, he's lots of fun. Upon arrival, he usually has an 'I'm not so sure about this' look on his face. Mom says he reminds her of how I was as a child.

Where are your teeth, Kale? 

Kale is at a really fun age (a little under two). He makes it difficult for Rebekah and I to solve any of the world's problems (as we used to do), but that is okay! Instead he teaches me where his nose, eyes, ears, tongue, hair, toes and tongue are. This is useful to know also.

Snuggle time.

Kale actually snuggled with me today! This is a first, and it was just what my weary soul needed.

Adorable.

As always, I'm so grateful for Rebekah's friendship and for being a part of Kale's life. 

Adorable, too, right? :)

After Rebekah and Kale left, it started snowing a beautiful snow. I indulged in a brownie as I watched the snow fall. And opened a snail mail package that warmed my soul. 

The afternoon provided a much needed gift in the midst of the continued challenges.

Blessings,

Emily

The Dr. Complex Appointment

Hyacinth at the Arboretum last summer.

Many of you have been asking me how my appointment went with Dr. Complex, what the treatment plan is at this point, and other questions. We've been back from the appointment for over a week now, and I've been plunging into the the treatments, some with better outcomes than others!


As I've mentioned before, what I like most about Dr. Complex is his holistic approach and his willingness to tune into me as a human being struggling with a difficult, complex and debilitating illness. While he continues to treat me as if I have a vector-borne illness, he is more focused on how I feel, not what we call the illness: "It's not about what we call it, it's about how you feel. It's about whether we can make you better."


Because Lyme is so nebulous, so difficult to pin down, so different in every individual,, I really appreciate this perspective. Lyme affects each person so differently.


At our most recent appointment, we met with Dr. Complex for a little over an hour. He runs on time, he is incredibly focused during the appointment, he listens very carefully, he is open to questions, he carefully answers questions, he shares and explains all of the test results, and finally at the end of the appointment, he goes over the treatment plan in detail while writing it down. 


I like this a lot. I'm exhausted and confused at this point. I really don't know what the 'right' answer is. There is no blueprint for treating Lyme, so it helps me to have someone who is directive, while still being open to the specific challenges of MY body.


I think for our family, our biggest questions concern the use of a lot of supplements. 

Hyacinths at the Arboretum this past summer.

However, what we do know at this point is that the treatment I was doing (very traditional) wasn't working for me. We also know that from my reading of other patient's stories, many have done very well when they take a more holistic approach to treating their illness. Lyme doesn't operate in a vacuum and it can, and will, effect every system of the body if it is given the opportunity (in my case it was!).


It's been very difficult to transition immediately from one treatment journey (the Rocephin) to another without a break. It's taken a lot to plunge into this new journey not knowing what the outcome might be.  At this point, I'm not able to really evaluate the treatment regimen. I'm still in the 'waiting' period, which Dr. Complex certainly gave me a heads up about! He was very clear that in the beginning things are very slow. (Boo!).


I feel like I went from one huge leap of faith by doing the port and the IV Rocephin to another huge leap of faith. Right now, I really want to give this treatment plan time to see if it is a fit for me. I continue to need and use a huge amount of my energy to manage, implement, and actively participate in this new treatment plan.

More of the same Hyacinths. They remind me of my time spent in Ireland.

The tests: Dr. Complex has done a lot of tests, some of them very different than ones I have had done previously. According to his testing, the one lab found a rare strain of Bartonella  (another tick-borne illness). Dr. Complex believes that the Bartonella could be contributing a great deal to many of my symptoms, especially the bladder issues and endocrine problems of Diabetes Insipidus type symptoms. Most Lyme patients have multiple tick-borne illnesses, so I was very grateful that Dr. Complex really looked into which ones might be contributing to my inability to get well.


He has thoroughly checked all of my basic (and more) blood work, as well as done additional testing for adrenals, thyroid, Vitamin D, etc. Somehow (even to his amazement, I think), my thyroid is still holding up, but my adrenals, well, not so much. Through his eyes, many of the tests, as well as my clinical evaluation, point to vector-borne illness and I will blog about this separately for those of you who have asked me about this.


The treatment plan: He uses both traditional prescription medications and supplements. He has not fiddled with my prescriptions much at this point.  Right now I am on several supplements, which I started after my first appointment with him. I have added them in gradually over time and, for the most part, have tolerated ALL of them extremely well. This is amazing!


The supplements include things like magnesium, taurine, pregnenolone, and high doses of Vitamin D and Vitamin B12.  I also did a round of homeopathy. Each supplement is targeted at helping to restore some of the ways in which my body has been depleted over the years, including my adrenals. Magnesium, Vitamin D, and B12 are pretty common supplements for Lyme and CFS-type illnesses. For the most part, all of the things he has prescribed make very logical sense. It makes sense to me that if I'm not detoxing properly, or I am deficient in vitamins, or my adrenals aren't working properly, my ability to both heal and feel the best I can is compromised. My mom's impression of Dr. Complex was that he had a 'common-sense' approach to things.


He also prescribed Cortef (basically cortisol, which is produced by the adrenals) in a very teeny dose in hopes of supporting my adrenals. Our adrenals are made to have short bursts of fight or flight. They are not made to function for 12 years in fight or flight. My cortisol levels are very low during the day, peak late at night (yup, this is probably why my sleep is totally screwed up!), and are pretty much non-existent in the morning (again, why I can't get up in the mornings!). However, I only lasted one day on the Cortef this weekbecause my reaction to it was so bad (nausea, nervousness, forceful heartbeats, insomnia, racing mind, moodiness, and major fluid retention). We will have to re-evaluate during our next phone consult.


Trying to decide what treatments to try first and which aspects of the illness to tackle first is a bit like 'playing a game of pick-up sticks' as Dr. Complex puts it. My case is so complex and I'm so sick that it's difficult to know where to start, even for him!

Yup, more Hyacinths. Too cold to go outside right now and take any photos!

We will continue to use antibiotics. Right now I am still on Zithromax which I was on during the Rocephin treatment also. Before the new year I increased my dosage to 1/2 tablet every day, and even struggled with this. The goal is to get me on 1 tablet daily.


I will also be using an antibiotic called Rifampin to target the strain of Bartonella. In early January, I started the  Rifampin at one tablet every other day. I had a miserable herx, which included a major increase in my Diabetes Insipidus type symptoms. Many nights I was up peeing about 8 times. Whew.


So, I stopped the Rifampin and I will restart it in a completely different way. I will be doing what Dr. Complex calls "Dot Dosing". I will literally open up the capsule, poor it into a little container, dip my index finger into the powder, and put that teeny amount onto my tongue. If I tolerate this baby dose, I will increase it bit by bit. I think my sensitive body will be very happy about this!


The new approach to antibiotics is very different from what I was doing previously. And, while many people believe long-term antibiotics are a no-no, it's the best defense we have. Dr. Complex said they won't make 'my liver fall out' as the anti-Lyme folks claim.


I asked Dr. Complex how he felt about me needing to feel sick on the antibiotics to feel better and how much of a herx was acceptable. He said that clearly I had tried the approach that says you need to feel a lot worse to feel better and it had not worked for me. This time around we will focus on trying to introduce antibiotics slowly, at my own pace, and without making me too sick. Dr. Complex feels that oftentimes pushing too hard with the antibiotics can backfire, leading us to relapse more because we keep having to back off and start again.


I am very, very relieved at this new approach because, quite honestly, I'm not sure how much more I have in me to do the grueling type of treatment I did on the Rocephin. 


I desperately want to find a better balance between trying to forge ahead with treatment and finding some quality of life. Quality of life is number one on my priority list and was my number one topic of discussion with Dr. Complex. He really 'gets' this part of things. He looked at me and said, "This isn't a life." He 'gets' the weight of dealing with this for so many years. 


Now, I'm just trying to stay patient and hopeful while I wait for the logarithmic part of things to kick in! I am also grateful for your continued patience and hope as I embark on another treatment journey...


Blessings,


Emily

Self-Preservation

"You might hear about an opportunity. Self-preservation may be foremost in your mind, but that doesn't make you selfish."

I seem to be in a place of 'figuring things out' on a lot of levels. Throughout my illness, and especially during times like these, I struggle with the belief that I am selfish. I had just discussed this issue with a close friend, my mom and Maxine, when I found my horoscope in today's paper. Mom had circled, starred and highlighted it. 


I love how Mom reads the paper first in the morning and marks  the things she thinks I will enjoy. I don't have energy to read the whole paper. It is also one of those beautiful tangible ways she shows me love. The circles around a funny comic, the highlighted article title, the asterisks next to a photo caption--they jump off of the page like hugs and smiles.

The confluence of events today surrounding the topic of taking care of myself, topped off by my horoscope, felt like a little message from God that I've got some work to do!

During this time, I've again left emails unanswered (which always leaves me swirling in guilt) and adds to my feelings of being selfish. Yet, I know that I do not view my friends as selfish when they are in periods of self-preservation (for whatever reason that may be)--a new baby, a health crisis, demands of family or work, etc.


How do we draw the murky lines between self-preservation, self-care, and selfishness? How do we find the balance? If the answer was easy a zillion other women wouldn't be struggling with the same questions. And the issue seems to be amplified among my chronically ill friends.

So, just a little post to say: I'm self-preserving. And I think it's a step in a good direction. Oh, and I wonder what that opportunity might be? :)


Thank you for your endless patience...I plan to keep blogging as part of my 'self-preservation' plan, as much as my crazy, unpredictable body will allow.

Blessings,

Emily

Oh Susanna!

Nephew David and his new little sister, Susanna. Isn't this a beautiful photo?

Just a little post to welcome my newest niece to the world! Carrie, Sam and Nephew David welcomed Susanna to the world this month. She weighed 9 lbs. 7 oz. just like her big brother. She was, however, an inch longer than David was at birth, so he had better watch out for that little sister of his. When Carrie called from the hospital, she and Susanna were both doing well, and continue to do so. 

I can't wait to meet you baby girl! Congratulations Carrie, Sam and David!

Blessings,

Emily

Magic Bullet

Apple trees in winter. Taken on one of our outings over the holiday to get apples and eggs at one of our favorite farms.
Until yesterday (other than about an inch of snow) we have had a 'snowless' winter. We seem to be the only people without snow!

Every time I head to see my major specialists or a new doctor, a part of me remains ever-hopeful that this doctor or this appointment will be THE appointment. It will be THE appointment during which the doctor discovers the missing puzzle piece and finds the hidden clue to my illness. I often picture the doctor figuring out that this isn't Lyme, because somehow it seems like things would be easier if it wasn't. Or he figures out the way to treat MY Lyme and has a plan we know is going to work.


He figures out why I have these crazy Diabetes Insipidus-type symptoms that keep me peeing a zillion times a day, and often many times during the night. Then, he FIXES it! He figures out how to get my sleep regulated and refreshing. He figures out how to get my ANS working again so that I can sit up and stand up and engage in normal activities. Or he just figures it ALL out and FIXES it and I get to have a LIFE again.


Of course, this isn't how it works. Still, a part of me arrives home exhausted from the exertion required of the travel and the appointment. And sad. Sad that we're still navigating a road of such uncertainty. 


The best answer we have is that this is Lyme and other co-infections. If it is not Lyme disease, no one has any alternatives. 


Right now I am beginning a completely new journey to try to achieve some quality of life. But Dr. Complex is very honest about the complexity and severity of my case. He makes no promises. The beginning of this new approach will be very slow, and it will take a lot of time before we know if it is working. If it does work, then once it starts working, the changes should be logarithmic and begin to happen faster. In the meantime it's still another waiting game, another unknown. The waiting sometimes feels unbearable. Just like I did with the Rocephin, I'm taking another leap of faith, not knowing if this treatment strategy will work or not.


Some days, like today, I'm overwhelmed by the sadness of continuing to feel that I've been working so hard to get my life back with no success. I feel the continued delay, and possible death of, so many dreams and life enjoyment. 


I'm also very weary. I've been 'pushing through' and trying new treatments, some of them absolutely horrendous (the rocephin) with no breaks. 


Sometimes it doesn't matter how great the doctor is or how great the appointment is. The news is still difficult and humbling. And even the best doctors in the country find themselves at a loss for how to treat patients like myself.  I can't help but to keep wanting a magic bullet. And I know I am not alone in this. I want it for all of my friends struggling with disabling chronic illness. Perhaps this is why the main piece of artwork in my room reads: "Hope is the thing with feathers that perches in the soul and sings the tune without words..."


Blessings,


Emily

Dr. Complex Follow-Up Appointment

New Slippers. I think these are like wearing a smile on my feet!
 And since today was a pajama day, I thought this was a fitting photo.

Mom and I just returned from my second visit with Dr. Complex. We drove down Sunday afternoon, hung out in the hotel, went to the appointment early Monday morning, and then headed straight home. We had great weather for travel. Mom was able to take me this time, so she got to meet Dr. Complex, which means now both Dad and Mom have been able to meet him. I did really well overall, as far as getting through the trip. In some ways I felt well enough to enjoy getting away and being in a place free of my piles and to-do lists! We even stopped at a Starbucks (my first time ever at one) on the way home for some tea and lunch.

We have started staying in hotels geared towards business travelers that have a partial kitchen, table and chairs, living area, separate sleeping area, and bathroom. This gives us each a sleeping space (I am spoiled and always get the bedroom with the king size bed and Mom or Dad sleeps in the living area) so that we can get the rest we need. It makes the trip a little bit more like a 'vacation' if that is possible. The suite at the hotel we stayed at this time was HUGE!

I had a very good appointment with Dr. Complex. He is very focused during the appointment, gives you an hour of his undivided attention, listens well, answers questions, explains the tests he has done, and sends you home with a very clear and focused plan to follow. I have been making a lot of 'calls' on my own when it comes to medical decisions, so I really like having someone create so much structure. Since my first appointment with him, I have also had phone consults to make changes and tweak things along the way.

He continues to focus on rebuilding and supporting the entire body--dealing with the collateral damage that has happened from so many years of the disease itself and from the antibiotic treatment. At the same time, we will continue trying to treat the underlying infections with different antibiotics. 

This week, I will start by adding in high doses of Vitamin D (my levels are very low, and this is very common in Lyme disease) and B12. 

The new year has been off to a bit of a rough start.  Right after the holiday I started a new antibiotic, but it caused too great of a herx, so we will back off and start again more slowly after I introduce some other things. I also (not so smartly) scheduled five doctors appointments in two weeks, so I am looking forward to the last one tomorrow (cardiology)!  Hopefully I can find a better balance soon.

I'm still processing the appointment (it was a lot to take in!) and will hopefully be able to blog in more detail (or in bits and pieces) after I finish up this round of appointments and have time to process it all. It takes so much physical and emotional energy to gear up for the appointment. 

Just wanted to check in post-staycation. I know I'm not alone in not wanting to be back at work!

Blessings,

Emily

A New Year's Eve Day Christmas with Dad and Abbie...

Me and Dad ('dressed up') for the photo shoot

I am very sad to be writing my last blog post on our holiday and staycation, but here it goes!

I asked Dad to arrive at my house on New Year's Eve day wearing a 'nice shirt' so that we could take some photos of the two of us together.  He started off the day with a big smile by arriving wearing a dressier shirt and a goofy tie over top of his 'regular' shirt.  For those of you who know my dad, well, this is 'classic Dad'. He is not known for his, shall I say, stylish or neat attire? 

Abbie, Dad and me. :)

On Christmas day, I spent the time meeting Reese and watching everyone else open their gifts. It is just too much overstimulation for me to try to watch others open their gifts, interact with multiple people, try to meet Reese, and open my own gifts. So we 'spread out the holiday' and Dad and Abbie came over New Year's Eve day.  


I was really able to enjoy Christmas this year and had a great afternoon with Dad and Abbie.

Asher goes right for the gifts!

As soon as I opened this box filled with a bunch of gifts, Asher dove (literally) into the box, tearing up the tissue paper and helping to open my gifts. He always thinks boxes are for him! (I have no one to blame but myself for this. Okay, and maybe the mailman for putting a bone in between the pieces of mail each day and my friend Sarah for sending him multiple boxes of treats in the mail.)

Looking forward to my lunch with Dad at the new Japanese restaurant in town.

Both Dad and Abbie did an awesome job this year with gifts. I will enjoy the fun stuff (like Netflix and a haircut), cute slippers, etc. and the practical stuff (Smartwool socks, post-it notes, toothbrush heads, etc.). Abbie is definitely the holiday shopper and wrapper. Dad did really well this year though, picking out a pink watch and getting me a gift certificate for lunch together at a new Japanese restaurant in town. he even put the menu in with the gift certificate. My dad is ever the optimist that I will feel well enough to go on these outings, and I do appreciate that he is able to keep that outlook. He also pulled a Classic Dad by wrapping one post-it note tablet in a large box. So, he hasn't turned a new leaf completely.

Aaawww, such a sweet father-daughter photo!

Here's one more photo of me and Dad, this time without his 'costume'.  

Thanks to D and A for a really wonderful and joyful Christmas celebration this year! Opening gifts on New Year's Eve day with D and A and then having lobster that night with Mom made for really special end to a difficult 2010.

Blessings,

Emily

Happy New Year!

Yikes! Live lobsters in the fridge!

We had a lovely New Year's Eve here! We hadn't planned anything, but when I woke up on Friday I discovered that Mom had run to the store, faced the crowds, and bought us fresh lobster! We also toasted the New Year with champagne.


I admit I was a bit freaked out by the sound of the live lobsters in the fridge, but it was so much fun. I don't think I have had lobster for 20 years? Not sure why I waited so long! Here are a few photos from our lobster adventure...

Ready for the lobsters

I did not witness the 'killing of the lobster' as I was still napping when Mom started dinner. I think this was for the better. 

Ta da! Here they are!

Better wear those glasses and make sure you don't miss any of the lobster meat!

I was able to sit at the table for part of dinner and crack the lobster, but after a while I got tired, and had to move to my usual dinner location in the reclining chair. I still think the lobster was worth all of the extra hard work. :) 

That evening we crawled into my bed to watch the New Year's Eve concert on PBS (fantastic and just my 'speed') and then flipped over to another channel to watch the ball drop. Mom 'napped' during the concert and woke up in time for midnight.

Earlier in the day, Dad and Abbie had come over to exchange holiday gifts, which made for a lovely day spent with family. I will post those pics in my next blog!

This was the best New Year's in a long time. Mom was awake at midnight. Dad called at midnight. I texted with a couple of people. We had a wonderful, memorable meal. The concert was amazing. The afternoon with Dad and Abbie was great. I also felt 'well' enough to enjoy it all. I payed a price for it all on the 1st, but it was definitely worth it.

I am so very sad that my 'staycation' is over and it is 'back to work'. Boo! As you can tell, I'm still on 'staycation' when it comes to blog topics...

Wishing you a blessed 2011,

Emily