Saturday, July 16, 2016

Saturday, July 16, 2016

Tonight's picture was taken in August of 2007. In 2007, I was voted to be the president of a national mental health association. An association that had over 6,000 members. I was the youngest president the association ever had. Because of my role with the association, I had to go to their July conference. Otherwise, for the most part I never really traveled without Mattie with me. The conference was held in New Orleans, right after Hurricane Katrina. At the conference, I made sure to bring back a fan and Mardi Gras mask for Mattie from our opening conference party. As you can see, when I got home and gave them to Mattie, he decided to parade around our home with them! 


Quote of the day: Kindness is a language which the deaf can hear and the blind can see. ~ Mark Twain

Yesterday evening we had our anniversary dinner at L'Auberge Chez Francois in Great Falls, VA. I had heard about this restaurant for years but had never gone until July 2015, when a friend of mine took me there for my birthday. The restaurant made such an impression on me that I knew this was where I wanted to go to acknowledge our anniversary. As you can see from the outside of the restaurant, it has a very European feeling to it. Then when you walk through the doors and see their outdoor garden, you are transported somewhere else in time.

Though it was hot and humid out, Peter was a good sport and we ate outside. There were a few other brave souls out there with us, but for the most part we had a great deal of space and tranquility. The outdoor terrace has two fountains, which you can hear running, and of course it is filled with greenery and beautiful flowers. Sitting in this atmosphere for a while, you immediately begin to relax. 

This was my view from where I was sitting!

The restaurant does a five course meal. You pick your appetizer, entree and dessert, but this is how the evening runs:

1. First course...They start you off with an amuse bouche (which was a demi tasse cup filled with a lentil type soup --- even if you don't like lentils, you will like this soup)
2. Second course....is a mesclun salad
3. Homemade grapefruit sorbet
4. Third course..... entrees (and the list to select from is large)
5. Dessert

This was Peter's entree..... salmon, shrimp, scallops, and lobster in a lobster broth

This was what my entree looked like. It was shrimp and scallops nicoise. 

Then this lovely dessert menu is presented to you!

Our waiter last evening was Fredy. Fredy was an old world waiter. He wasn't intrusive, but couldn't work hard enough to meet your every need. Though we did not tell Fredy it was our anniversary, he came out with an extra dessert with a candle on it. He said it looked like a special evening for us, and therefore we needed to celebrate. Amazing fellow! I felt like I was on an episode of Downton Abbey last night..... dinner was that special. I think Fredy confirms what I already knew.... when you work with someone who is kind, your whole dining experience can be transformed. 

Here is a close up of the chocolate souffle that we ordered. I haven't had a souffle in years. However, I literally was presented with three different desserts to eat, which for a dessert lover was a match made in heaven. 

Friday, July 15, 2016

Friday, July 15, 2016

Tonight's picture was taken on July 15, 2007. How do I know? I know because on the table are two goblets. We only used to take these glasses out on our anniversary. These glasses belonged to my paternal grandparents and they were given to them on their anniversary. By the way, their anniversary was also July 15th. So Peter and I carried on the tradition, as it was very symbolic to use these glasses to acknowledge our wedding anniversary. Also notice that Patches, our cat, was outside celebrating with us too!


Quote of the day: Love is just a word until someone comes along and gives it meaning. ~ Chuck Palahniuk

In honor of our wedding anniversary, I pulled out several photo albums and then digitally told photos of the hard copy photos. As you will see below, some of the photos have lost their coloring. 

This photo was taken on our wedding day in Rye, NY. It was an amazingly hot day (over 100 degrees) and how either of us managed outside posing for photos was beyond me. 

This photo was taken the summer I met Peter at college. If you have the chance to ask Peter how we met, he will tell you a very humorous tale. In a nut shell, Peter and I were in our college choir together. But frankly I never noticed him there. One summer we both stayed at college to take extra classes, and while there, we ran into each other. Peter tried to make polite conversation with me but again I blew him off. Peter asked me, "how is choir." My response was, "why do you want to know?" Peter's response was, "because I'm in choir with you." I literally went to find a mutual friend of ours who was in choir to confirm that Peter was part of our choir. Because basically I did not believe Peter and thought he was throwing out some sort of line to me. It was from that point on, that our friendship developed. 

A New Year's Eve celebration in the 90's!

I don't really remember this photo, other than I know it was taken at college. What the occasion was, I have no idea!

A Christmas photo, pre-Mattie. You can see our furry family addition here. Patches, our calico, was with us for 16 years! She was an important part of our family. 

One summer trip to Los Angeles (to visit my parents) we decided to paint my parent's deck. My mom snapped this photo of us. Peter and I are always doing tasks and activities. It is what we excel at, even before Mattie was born. 

Then of course Mattie came into our lives. 

This is our life now, post Mattie's death. The death of a child to cancer tests a marriage greatly, and also tests you as a person. Trying to find your way through this quagmire is not easy. For a marriage to work, it takes a great deal of patience, flexibility, care for the other person, love, and trust. But after the loss of a child it also takes forgiveness for the situation and a willingness to find a way to continue moving forward together. 

A photo of us in March of 2014, as Mattie Miracle was the recipient of the Flame of Hope Award given by Georgetown University Hospital. We were decked out in our Mattie Miracle colors! 

Thursday, July 14, 2016

Thursday, July 14, 2016

Tonight's picture was taken in July of 2006. That weekend we took Mattie to the National Zoo. Within the zoo they have a petting zoo for children. So we walked Mattie into the barn to meet the horses. You may not able to tell from this photo, but I certainly can. Mattie wasn't happy with me! This was the type of face Mattie gave me when he was disinterested with my photo needs and requests. So he would get this kind of glazed look! Nonetheless, Mattie always enjoyed going to see any type of animal and when comfortable would want to pet and observe it. 


Quote of the day: Obstacles can not crush me. Every obstacle yields to stern resolve. He who is fixed to a star does not change his mind. ~ Leonardo da Vinci


I find it particularly interesting how people feel the need to lecture you about your own health decisions. Today I went to physical therapy again, as I go twice a week and try to alternate therapists. I find that each therapist has something different to offer me and yet I know they work together to coordinate care. Well today's therapist sat down with me and gave me her opinion about fibromyalgia. Mind you it was her therapy practice that wanted me to get evaluated for it! It wasn't something that just popped into my head. 

She wanted to tell me that she too lives with chronic pain from a different issue but finds medication very helpful. So she wanted to encourage me to be open to meds, despite my insistence that I wasn't going to take them if offered to me. Now do keep in mind she and I have different physical issues, so we aren't even talking about the same medications! But even if we were, medications react differently with each individual patient and it really is a personal decision.

I was patient and kind to listen to her preamble and then gave it to her. I like directing my own health and making my own decisions. Only I know what side effects previous medications have produced for me and I also know I have spent more time recovering from medication side effects. Medications that did not relieve the original issue either but instead left me managing the original symptoms plus the side effects from the medication.

She then got agitated with me and told me that she doesn't like diagnoses that are weak in scientific data! Meaning illnesses like Fibromyaglia don't come with specific tests to make an official diagnosis. Instead, it is a rule out disease. I then stopped her and I said I too am a scientist and believe in the power of quantifying symptoms and having data to back up a diagnosis. Yet I said to her as therapists we also understand the art of being human and as such we have to be open to the fact that science CAN'T and DOESN'T explain everything that goes wrong with the human body. I told her that she and I are clear examples. Therefore, it is important to explore all options and alternatives before jumping to medications. She couldn't argue with me, but honestly why did I have to even have this discussion. 

Taking a step back and trying to see her point of view, I know she was trying to be of help and to offer hope. But this is where doing therapy is a fine art form. You have to know when is a good time to approach such subject matters with patients and when patients aren't open to hearing it. Today wasn't one of those days, especially after I feel like I am still absorbing what I learned from the rheumatologist. 

Wednesday, July 13, 2016

Wednesday, July 13, 2016

Tonight's picture was taken in July of 2005. Around the July 4th holiday! This was Mattie's third vacation at the beach in North Carolina. As you can see he truly enjoyed it. I am so happy I snapped this photo of Mattie laughing outside with Peter! I literally just found this photo on our Shutterfly account. I am so happy we uploaded and stored photos back then, because despite being organized it is very easy to lose photos on one's computer. 


Quote of the day: Cats always know whether people like or dislike them. They do not always care enough to do anything about it. ~ Winifred Carriere


My day started with physical therapy. However, having slept poorly again last night translated into a high level of pain. I told my therapist about the fact that I saw a rheumatologist, based on her suggestion. She was happy to hear this but unhappy to hear that her suspicions were confirmed. I guess my question is..... I see so many doctors, how is it that none of them were able to make such an astute observation?! This is really a rhetorical question! Because I know the answer..... doctors do not spend enough time with you to effectively assess a problem, nor do they work with you in context. Whereas, therapists, like physical therapists see you often and observe your body actively doing things. Throughout these sessions there is also conversation and I can assure you that in my five months of therapy, I know about the lives of both of my therapists as well as the lives of all my therapist assistants. Does this ever happen with a doctor? Okay maybe a handful of doctors this could potentially happen with, but for the most part this is rare! It shouldn't be, but it is. To me this centers around medical training and the simple fact that doctors view medicine as only a science and taking into account feelings and the patient's insights are irrelevant and doesn't impact the diagnosis! I would say this not only limits medicine but in some cases makes it ineffective.   

Later in the day I had to capture Indie and box her to take her to the vet for her well visit. As you can see by my arm, it was no easy endeavor. I tried using the same technique I used to use to box Patches. Clearly it did not work. 

Indie did not mean to scratch me, it was just her fear level was high, especially since we only brought her to live in our home less than a week ago! 

Our vet was happy to see me today. She is the same vet that cared for Patches for many years. However, the room that I took Indie into to be examined was the SAME room we put Patches to sleep in! A room you never forget. 

When the tech came in to take her weight and temperature, things started to get fun! Holding Indie on the exam table was like trying to hold back the ocean. 

After the tech was finished with her, Indie hopped off the table and jumped into the sink that was in the room. She sat in the sink until the vet came in to talk with me and exam Indie. But here is the ironic part. As soon as the vet picked up Indie and started to exam her, Indie calmed down. It was like the vet was the pied piper! She had a good visit and got a clean bill of health. 

I wish things were as easy for Sunny, the dog. We were supposed to get Sunny on Saturday, but it turns out Sunny and all the other dogs in the shelter in South Carolina are being quarantined. I guess there was an outbreak of something and all the dogs need to be monitored for a month. Needless to say I am trying to find out what exactly caused the outbreak. Since we already know that Sunny has heart worm and needs treatment for at least that!

Tuesday, July 12, 2016

Tuesday, July 12, 2016 -- Mattie died 356 weeks ago today. 

Tonight's picture was taken in July of 2005. It was our tradition.... when we drove down to the Outer Banks of North Carolina, we would stop at Morris Farms along the way. There are many wonderful farm stands on the side of the road, but the one that is the most memorable to me is Morris Farms. Just amazing produce and other goodies! In addition, they have all sorts of farm equipment out front, and naturally Mattie gravitated to the red tractor!


Quote of the day: Of pain you could wish only one thing: that it should stop. Nothing in the world was so bad as physical pain. In the face of pain there are no heroes. ~  George Orwell


I went to see a rheumatologist today, because my physical therapist had encouraged me to get checked out for fibromyalgia. My therapist has been working with me since early March. Though there are slight improvements, I still have many issues. I have never seen a rheumatologist before, but I went armed today with a complete history (that I filled out at home, so I would have more time), and I also had copies of my blood work and MRIs. All things I had completed in February when very ill. 

It was an interesting visit, in which he asked me many questions and seemed to be honed in on two things.... do I have a family history of any kind of arthritis (which I have), and have I ever experienced any traumatic event. A childhood cancer diagnosis is one trauma, but then there were NUMEROUS traumas throughout Mattie's 15 months of treatment and beyond. Once I told him that Mattie died from cancer, he said he was sorry and then really looked for no other explanations after that!

He gave me an examination and once he did (based on all my other testing data which ruled other things out), he felt confident that I have fibromyalgia. He took five vials of blood from me today for further testing and also wants me to do a sleep study. As Peter can attest to...... post-Mattie's death, I have become a horrible sleeper and am up constantly during the night and tossing and turning. This doctor has ordered me a sleep test because he wants to know if there are any other explanations OTHER than fibromyalgia for my poor sleep. According to him sleep is very necessary to manage this disease, along with aerobic exercise. He already gets that I refuse to take medication, given my sensitivity and typically bad side effects to it!

Our society (and I should emphasize our medical community) believes that it is impossible to get a physical illness from stress and trauma. All I can say is look no further than me! I am a walking case study of what transpires when under an inordinate amount of stress. My mind and body kept it together for 15 harrowing months in the hospital caring for Mattie 24/7, but after Mattie died, everything fell apart. I think the conditions we lived under while caring for Mattie were horrible, and in a way I always say we were living on a medical battlefield. I feel this gave me some insight into how traumatized our military members must be when they come back from overseas. I still remember sitting next to Kevin on my flight to Los Angeles one year. He served in Afghanistan and literally we talked throughout the whole flight five hour flight. He was coming home to see his wife and children and had many concerns about this. He did not think I would get it, but then I told him my story. In many ways, we had many of the same symptoms, fears, and concerns. Despite our experiences being totally different. Different traumas, yet we related to each other perfectly.  

Therefore I am quite certain that stress and emotional concerns can produce physical illness, as well as physical illness (such as childhood cancer) can cause mental health issues and problems. It goes both ways and it is my hope at some point in my life time that the field of medicine truly embraces this reality and integrates both the medicine and psychosocial care into practice. 

Here is some information on Fibromyalgia.....................

Although fibromyalgia is often considered an arthritis-related condition, it is not truly a form of arthritis (a disease of the joints) because it does not cause inflammation or damage to the joints, muscles, or other tissues. Like arthritis, however, fibromyalgia can cause significant pain and fatigue, and it can interfere with a person’s ability to carry on daily activities. Also like arthritis, fibromyalgia is considered a rheumatic condition, a medical condition that impairs the joints and/or soft tissues and causes chronic pain.

The causes of fibromyalgia are unknown, but there are probably a number of factors involved. Many people associate the development of fibromyalgia with a physically or emotionally stressful or traumatic event, such as an automobile accident. Research shows that people with fibromyalgia typically see many doctors before receiving the diagnosis. One reason for this may be that pain and fatigue, the main symptoms of fibromyalgia, overlap with those of many other conditions. Therefore, doctors often have to rule out other potential causes of these symptoms before making a diagnosis of fibromyalgia. 

Another reason is that there are currently no diagnostic laboratory tests for fibromyalgia; standard laboratory tests fail to reveal a physiologic reason for pain. Because there is no generally accepted, objective test for fibromyalgia, some doctors unfortunately may conclude a patient’s pain is not real, or they may tell the patient there is little they can do. Criteria established by the American College of Rheumatology (ACR) for a fibromyalgia diagnosis include: a history of widespread pain lasting more than 3 months, and other general physical symptoms including fatigue, waking unrefreshed, and cognitive (memory or thought) problems. 

Monday, July 11, 2016

Monday, July 11, 2016

Tonight's picture was taken in July of 2005. This was Mattie's third summer trip to the beach. By this point he was very acclimated to the sound of the surf and the feeling of the sand on his feet. I love this photo that Peter took of both of us. The ironic part is I haven't seen it in YEARS! I only found it two days ago when searching through our Shutterfly on-line photograph account. I am so happy I found it!


Quote of the day: The most beautiful discovery true friends make is that they can grow separately without growing apart. ~ Elisabeth Foley


Tomorrow I am going to visit a Rheumatologist. This is a doctor who is qualified by additional training and experience in the diagnosis and treatment of arthritis and other diseases of the joints, muscles, and bones. It would never have crossed my mind to see such a doctor, but I am complying with the suggestion from my physical therapist. Believe it or not, I have been going to physical therapy since the beginning of March, two days a week (so going on five months now). I was prescribed physical therapy by my neurologist who was desperate to try to help me in February, when my body was dealing with a massive amount of symptoms that prevented me from functioning. I will never forget February, nor did I think I would ever return to feeling stable. 

The rheumatologist's intake is incredibly detailed and lengthy. It literally took me 30 minutes to complete it. Since Mattie's death, I have been consistently ill and debilitated from one thing or another. Medical doctors do not like to see the connections between dealing with trauma and grief and medical illness, but myself and so many other moms whose children had cancer are walking examples! Needless to say, I have completed MANY intake forms over the past six years, but this is the FIRST one that actually asked about number of children and whether they were ALIVE! Most intakes just ask the number of children you have, and frankly this is a very awkward question for me to answer. Mainly because I always want to say..... I have one child...... yet this one child died from cancer. 

This is what the intake form actually looks like and I have to say I felt as if there is finally an intake that applied to my family's situation! How novel. 

Sunday, July 10, 2016

Sunday, July 10, 2016

Tonight's picture was taken in July of 2004. Seeing photos like this actually make me laugh because I remember what it was like to try to hold Mattie, or contain him in any way! It usually did not go well. Mattie was a free spirit and as such did not like his car seat, a stroller, or to be picked up and held! As you can see in this photo, Mattie was squirming out of my arms and wanted to get down. Also notice the sippy cup! Some kids have a stuffed animal, mine had his sippy cup.  


Quote of the day: No one appreciates the very special genius of your conversation as the dog does. ~ Christopher Morley

Peter and I went to a dog training today offered by City Dogs, the rescue group where we got Indie the cat and will be getting Sunny the dog (on July 16). This training session is mandatory for dog adopters and dogs are not allowed to attend the meeting. The rescue group provides this two hour free training because taking home a rescue dog is VERY different than taking home a dog from a breeder. 

Of course there is the trauma associated with living in a high kill shelter, where Sunny is coming from. A high kill shelter means that more than 90% of dogs are euthanized who come to this shelter. So you can imagine the turmoil associated with living in such a facility! However, what the trainer prepared us for was the actual stress and trauma of just being transported up here to DC to be adopted. 

Next Saturday, July 16, Sunny and 15 other dogs are being caged and transported in individual cages in a van from South Carolina to DC. They manage this 8 hour van ride without breaks. Naturally each of these dogs is highly stressed in their cage and some dogs are barking non-stop, some crying, and you get the picture of what this van trip must be like. As soon as the dogs are unloaded from the van, adopters pick up the dogs. So literally when we pick up Sunny, he will be in a state and as such we are told we may not see his true personality for days, weeks, or some dogs months until he gets comfortable with us. These dogs from high kill shelters are not used to living in homes or with people, so they need to be socialized. The trainer commented that since our dog is part border collie, this will be a mixed blessing. He will be very intelligent and therefore trainable, yet requires great mental stimulation. Such stimulation isn't necessarily associated with physical stimulation, which was eye opening to me. 

I feel like I learned a lot in this session and first and foremost learned that dogs aren't like us. They don't have feelings in the same way we do, meaning if you set limits and structure, or try to correct behaviors, they don't hold a grudge or get upset with you. Dogs need to know who the leader is in the household, and not unlike raising a child require boundaries and love. I have great uncertainty about raising a dog, despite being the one who wants to adopt a rescue dog. Not having any experience with this always makes me nervous, but I figure if I can raise Mattie and deal with cancer, I will figure out Sunny as well in time. Also when in doubt I will hire a trainer. Because I can see it is about learning several basic behavioral techniques in order to have a happy dog, yet it is an art about how to apply them and to be diligent about doing it consistency. 


When I got home today, I received an email about Sunny. I learned that Sunny has been diagnosed with heart worm. Typically dogs today are treated monthly with preventative heart worm medication, not unlike the monthly flea and tick medications they receive. These monthly medications prevent dogs from getting heart worm. In Sunny's case, he is living in a shelter that clearly did not provide him with heart worm medication. Some adopters refuse to adopt a dog who tested positive for heart worm, because of the expense and the fact that you have to administer medications and take your dog for three shots and further testing. 

However, given that heart worm is curable, we are continuing with the adoption process. But heart worm is a serious condition is left untreatable and while under treatment, we are required to limit the physical activity of the dog. 

Heartworm Disease is a parasitic disease transmitted by mosquitoes. It is not contagious to humans and cannot be transmitted from dog to dog. Heartworm is easily prevented by giving the dog a preventive tablet once a month, but unfortunately in the rural areas where most of the dogs being rescued are from, prevention of diseases is not a high priority. Heartworms slowly grow in the dog’s heart and arteries over months and years of infection. There are no symptoms at first but it eventually you may notice an occasional cough, weight loss, and fatigue after minimal exercise.  

Meanwhile Indie is settling in and seems much more comfortable at home and around us. She is eating, using her litter box, and is VERY social. More like a dog than a cat. She responds to her name and wants to be in whatever room you are in! 

Today we showed Indie, Mattie's stuffed animal of a Jack Russell Terrier. I entitle this.... "Round one, Indie versus Jack." If you look closely you will see that Indie is batting at Jack! 

Indie truly loves being around us and will follow us from place to place. I have never experienced a cat quite like her, who craves attention and really wants to be a part of the family. Usually cats are very independent and you fit into their life style!