Tuesday, May 7, 2013
Posted by Crafty Mom at 10:08 AM
Monday, April 29, 2013
Posted by Crafty Mom at 9:55 AM
Sunday, April 28, 2013
I'm feeling like I should rename this blog "Medical issues take over a Crafty Mom's Life". I'm emerging from under my rock and doing a little more creating. I've been going through a lot lately, both physically and emotionally. Grab a cup or glass of your favorite drink and I'll update you on my medical stuff and then I'll update you on some fun artsy stuff.
I'm having severe, chronic pain and incredible fatigue. This has been going on for months (at it's worst). During my childhood, I had significant foot and leg pain and limited ability to stand or walk for extended lengths of time. I would tire easily when shopping. I was always at the end of the line on field trips working hard to keep up with my classmates. As I grew, I developed very high arches and "hammertoes" which means my toes all curled under. I have no idea how I worked as a cashier as a teenager, because I was in such incredible pain from standing and I would come home and literally collapse.
When I was about 11, I saw an orthopedic surgeon at The Hospital for Sick Children in Toronto. He quickly determined I would need surgery to correct my high arches, curled toes and misaligned heels. I had 3 separate surgeries at age 12, 15 and 17 to correct all of this. Each time, the surgeries were done on both feet simultaneously.Since my first surgery, I've worn custom orthotic inserts to help support my arches and alleviate pain.
Ultimately, I learned over time, the surgeon believed I had classic symptoms of Charcot- Marie -Tooth Disease (CMT). This is a genetic neuro-muscular disease that often presents with the symptoms I described. In the last 10 yrs there has been research done to identify the genes related to CMT. I've gone through my life under the assumption that I have this disease and that I've just never been formally diagnosed.
The good news is, eventually in my 20's I began feeling reduced pain and symptoms. I became more active than I've ever been and became an avid hiker. While I still appeared to become more fatigued than my hiking mates, and took longer to recover, my CMT was practically a non-issue for me. That is, until about a year and half to 2 years ago.
I began twisting my ankle frequently. Nothing serious, and I would generally recover within a few hours or a day. My ankle would just turn over every now and then while I walked, resulting in a limp when injured. This began happening more frequently and became quite painful. I finally saw my primary doctor for this about a yr ago and as a result I had my inserts updated in hopes to resolve the issue. Well, it didn't. I began having a steady increase in symptoms over the next yr or so and I've experienced an aggressive progression in the last 6 months to a year. Recently, I've realized my body is misaligned in general. I have one leg longer than the other, my knee caps don't line up and their misalignment can't be explained by the differing lengths of my legs. As a result of this, I've been having back pain and hip pain. My right foot also points outward toward 2:00 if using a clock face as a guide. My right knee is somehow involved in all of this and I'm having knee pain. My 3 biggest issues at present are significant ankle pain, incredible nerve pain in both legs and feet, and horrible fatigue and poor endurance.
For the last few months, I've been feeling totally completely spent by 3:00 in the afternoon. As I've mentioned before, I'm a hospice social worker and I work from home doing charting and phone calls and then I visit my patients and their families in their homes. My health has been so poor recently that I've only been able to do the bare minimum work-wise, and this leaves me completely exhausted by 3:00pm and lying on the couch until bedtime. If I'm lucky I can catch a nap, and then it all continues the next day. This is a completely drastic change from who I was 2 or 3 years ago. I used to be very high energy, hardly able to sit still. I finally reached my breaking point last week. I had an appointment with a neurologist to pursue an actual diagnosis of CMT and get an appropriate treatment plan so I can function. He isn't convinced I have CMT and I have some follow up tests scheduled. While in his office, we realized I have muscle atrophy (muscle loss) in my right leg, which can certainly be contributing to my leg fatigue. So much so, that it's visible by just looking at it. In the meantime, my primary doctor has put me out on medical leave because I can't continue the way I have been. I just don't have the stamina and endurance to make it through the day and keep up with my workload. She's increased my medication for nerve pain, and hopefully the time off work will help me adjust to the side effects of dizziness and drowsiness.
Each day this week I've been feeling better and better. The scary thing is, I know I'm feeling better because I don't have the physical and emotional demands of work. I'm not exactly sure where that leaves me, but I'm trying to just take one day at a time while exploring my options. I'm nowhere near being 100% and pain, fatigue and limited endurance still play a major role in my days, but I'm better than I was a week ago.
Anyway, this has all taken it's toll on me physically and emotionally. CMT is a progressive disease, but somehow, when I was doing so well in my 20's, I guess I didn't think it was going to get any worse for me. Ironically, one of my best friend's has CMT and her CMT is very progressed. She is on disability because of her chronic pain and weakness and how it impacts her ability to function and complete simple tasks. In the late stages of the disease, the hands are affected and hand dexterity is greatly diminished. There are times in the last 2 years that I've looked at her and watched the progression of this horrible disease and thought "Is that my future?". Right now, I don't really know what the cause of all my symptoms is, and it's quite possible I have more than one condition or disease at play. I've had a work up for Rheumatoid Arthritis and although I've tested negative on bloodwork before, I've been referred to a rheumatologist. I also had the bloodwork repeated this week and am awaiting the results.
So...what's getting me through all of this? Aside from my wonderfully supportive husband and friends, ART! I've finally decided to force myself to create everyday because I KNOW how therapeutic art is for me. I KNOW art is my happy place. I used to feel so at peace and invigorated when I went hiking. I haven't laced up my hiking boots in almost 2 years. But I can still pick up a paintbrush and I can still go wild in my art journal. Yes, I need to take frequent breaks because I can't sit or stand for any significant amount of time. But, in mixed media art, I create so many layers that often breaks are needed to help the layers dry, or to figure out where to go next with my creation.
Posted by Crafty Mom at 1:42 PM
Saturday, November 24, 2012
So, while we're certainly thankful for all of these strengths, the result is that for her, SPD is a stand-alone diagnosis. When I compiled a list of Taylor's behaviors, and provided the completed SPD checklist from The Out of Sync Child to our pediatrician, I asked for a referral for an OT eval and we were seen at a local PT clinic. I live in an area where geriatrics is the main focus of health care and services, due to our population. While the OT we saw validated our concerns and agrees Taylor had many behaviors consistent with SPD, she recognized her own limitations in knowledge about SPD and referred us to another clinic for on-going OT. The referral for on-going OT was denied by our health insurance, going back to the reason that SPD is not recognized in the DSM.
I also think it's worth noting here, that the OT that completed the initial eval started going down the road of ADHD. SPD is often misdiagnosed as ADHD. Yes, Taylor is hyperactive (although I *really* hate that word!), and yes, Taylor has trouble focusing, BUT...her hyperactivity is related to her *need* for sensory input. She moves constantly as an attempt to fulfill her need for sensory stimulation. And, she can focus just fine as long as she's moving or chewing on something. In fact, she has almost no problems at school. She's able to get input in ways that are not disruptive to her class, her teachers adore her, and she's above grade level in every area. Her teachers completely scoffed at the idea that it was suggested she has ADHD.
Knowing that we desperately needed more guidance in managing Taylor's behaviors, we decided to pay out of pocket for OT at the recommended clinic. The OT we saw, came highly recommended by a dear friend who has a son with autism. During our first meeting with our OT, it became very clear how experienced and knowledgeable she is. I felt hopeful and relieved, but also a little sad, because it made all of this more real and valid. Mostly, though, I was grateful we found someone who was finally going to help us.
Prior to our appointment, I wrote a detailed report of Taylor's relevant medical history (food allergies, asthma, multiple episodes of pneumonia, chronic ear infections as an infant, the fact that she was born with the cord around her neck - which is listed as one of the factors with kids with SPD). I also wrote about our biggest behavioral challenges, and what we've put in place at home.
Our OT began our session by giving us a tour of the clinic. We ended in the "imagination room" where Taylor played with trains and cars while hubby and I talked with the OT. She began by going through a sensory profile with us. This was a multiple page scale that asked questions about how Taylor responds in certain situations. By the time we reached the 4th question, we were having a vivid dialog about our challenges and our OT had realized that we've already put a lot of things in place to help Taylor cope. For example, one of the questions was related to if Taylor is able to behave appropriately while eating out. I explained she is, as long as I bring a bag full of appropriate toys to occupy her. Left to her own devices, she'll crawl under the table, talk excessively and interrupt, and not have the patience to sit at the table. And, let's not forget about the fact that she almost never actually eats the food she is served. The food either tastes "yucky", doesn't look "good", is just plain "gross", isn't the same as the same item that I make at home or that she's served at school.
During our discussion, we were very aware that Taylor was listening to every word that was said. I'll be completely and wholeheartedly honest, here, in hopes to validate what you may be feeling reading this, if you have a child who regularly challenges you beyond what you feel you can manage. A lot of our conversation revolved around my husband feeling like a referee between Taylor and I. While John and I have a very united front in our parenting, Taylor responds much better to his direction and discipline than she does to me. Through this very candid discussion (while attempting to be discreet so as to not offend Taylor or impact her self-esteem), it became obvious to our OT how exhausting and unpleasant it was for me to be alone with Taylor. Everything was a battle. Our OT said the words for me in a completely empathetic and validating way, that I didn't "like" my child. This brought tears to my eyes. Tears because, she was absolutely right. Tears because how awful does that sound? Tears because I remember when she was about a yr old, someone commenting on how obvious it was that I really "liked" my kid and what a great relationship we had. I cried because we had lost that. I cried because despite all of my education and experience as a social worker, I felt totally lost at how to parent my own child. I believe that God doesn't give us anymore than we can handle, but I was really feeling like God had overestimated my abilities and strength.
During that session, our OT gave us a lot of hope. She validated my parenting style, but also pointed to its weaknesses when it comes to raising a very strong-willed child with sensory issues. There were so many light bulb moments during that hour, I can't even begin to share it all. But I want you to know, that now, just a few months later, I can say that I like my child again, and I enjoy spending time with her. I no longer dread the weekends. Yes, there are still a lot of days that are exhausting, and she still has sensory struggles, but I'm able to control my reactions to her behavior and be more empathetic and help her through these challenges.
*This is another entry into our Journey with Sensory Processing Disorder. I actually wrote this after Taylor's initial consult with a pediatric neurologist in May 7th, 2012. I'm just getting around to posting it now.*
Today, we took another step in our journey toward a diagnosis of Sensory Processing Disorder. We've had two sessions with our OT and she's convinced based on my report of Taylor's behaviors and observing Taylor in our home for two hours in which Taylor showed her true sensational colors, that Taylor does, indeed, have Sensory Processing Disorder. Specifically, she believes Taylor has Sensory Modulation disorder with primarily sensory seeking behaviors. As I mentioned before, SPD is a neurological disorder. Back when we were first faced with road blocks of getting OT covered by our insurance, I discovered it would be helpful for us to see a neurologist and get an actual diagnosis of a neurological disorder. Currently, SPD would fall under neurological disorder NOS (not otherwise specified) since SPD is not in the current DSM. So, today we saw a pediatric neurologist through Loma Linda Children's hospital.
In preparing for Taylor's appointments, I learned long ago, that our appts are the most productive, when I write a summary of problems I'm seeing and questions I have, along with my goals for the appt. We had Taylor's birthday party yesterday and planning for that, combined with some other unexpected stress, left me with little time to devote to prepare a written summary for today's appointment. So today, I wasn't as prepared as I usually am. The doc began by questioning the symptoms I reported verbally. He questioned how this is different than any other child. Of course, Taylor wasn't helping our case given she was sitting contently silent, and fairly still, beside me. Of course she had a very mellow day because she got lots of stimulation yesterday at her party. Suddenly I felt defensive, but I also realized I wasn't reporting my concerns well enough to paint a true picture of my daughter and our daily struggles.
I handed the very nice doctor the report I had written a few months ago for our OT. Once he looked over that list of 12 bullet points of persistent problematic behaviors which are classic SPD behaviors, as well as my completed checklist for the Out Of Sync Child, he stated a full neurological assessment is warranted so we truly know what we're dealing with and how best to help her. The neurologist agrees Taylor has "issues" and wants her seen in his pediatric neurological assessment program. Through this program, she will receive approx 26hrs of testing and observation/evaluation. This testing will be broken into 3-4 hour sessions over several months. At the end of it all, we will have a better idea of Taylor's strengths, and areas to focus on in treatment.
Ultimately, I'm hoping through this program we will reach a diagnosis and from that work on a treatment program. Most importantly, I want to ensure she gets the right strategies in place so she can continue to succeed in school. She'll be going into 1st grade in public school in the fall. Currently, she's in a private kindergarten class in a preschool where she's been since the age of 2. There are maybe 100 kids total in the school. There are 15 students in her class, 1 teacher and 1 full-time teacher's aid. When she heads to public school, she'll be in a class of 30+ students with one teacher, and she'll be expected to sit and focus for 6hrs as opposed to the current 3 hrs. Her recess time will be shorter and she won't be able to have the level of intense activity on the playground that gets currently. At her current school, she often hangs upside down on the monkey bars for long periods of time. I don't understand the science behind it, but I know that hanging upside down helps people with SPD "organize" their nervous system. According to our OT, public schools in our area don't allow kids to hang upside down on the monkey bars. Yep. Seriously. I'm sure she'll figure out other ways to get the input she needs, but that's just one of the many hurdles I see us needing to jump as she transitions to public school.
The neurologist made it clear that he doesn't feel she has "severe" SPD. I agree. I also feel like we're miles ahead on our journey since the first time we met our OT. Heck, a year ago, I didn't even realize the extent of Taylor's sensory seeking behaviors. They were pretty well managed because she was getting enough appropriate input at school. It wasn't until she moved to the kindergarten classroom last June that I realized what a sensational kid she is and how critical it is that she receive appropriate stimulation in the appropriate amount.
So, all in all, it was a productive appt.
Monday, August 27, 2012
Posted by Crafty Mom at 8:25 PM
Sunday, August 12, 2012
Grief is one little word that is so huge and comes with such a heavy burden, but when worked through, can also lead to true feelings of refreshment and renewal. If there is one thing I know to be true about grief, it's that grief is incredibly personal and each person has their own ways of grieving. In writing about this topic, here, in my little corner of cyberspace, I'm by no means trying to spout off some secret wisdom as though I'm some grief expert. I simply want to share what's been going on in my life for the last several months, and share how I've been coping, in hopes that it may offer someone else comfort.
So, for starters, I'm a hospice social worker. I've been doing hospice work for about 3 1/2 yrs. I face death and dying on a daily basis. But, and this is a big BUT...the people who are dying and the families and loved ones of those who are dying, are not my friends. Do I care about them? Sure, most of the time ;). Do I let myself become emotionally attached to them? Rarely, but sometimes it happens. As a social worker, I have learned to develop healthy boundaries between myself and my patients and their families. I have an ethical responsibility to maintain professional relationships with my patients and clients and not form personal relationships. Do I hug them and offer them sincere comfort as they share their fears, and worries and ultimate grief with me? Of course, I do. But I always keep in mind that my purpose is to support them through this time, as a professional, and then move on. If I became emotionally involved with all the families I work with I would be useless. I'd become so intensely emotionally exhausted that I would have nothing left to give my patients, their families or more importantly, my own friends and family.
Quite often I'm asked by the families I work with "How do you do this everyday?" In other words, how do I deal with the emotions of grief and watching people die on a daily basis. Well, first I know my role in all of this, as I just mentioned. But secondly, I'm not watching *my* loved ones die. I'm not watching *my* loved ones lose someone they love. That is the difference. And it's a difference that is huge.
Last October it became personal...
In late October, I got a call from my mom and I felt as though my heart was ripped out. She called to tell me that my on again, off again ex-boyfriend from highschool, died suddenly in his sleep. He was just 35 yrs old. He was a HUGE part of my life every single day for several years. Some of my happiest and saddest moments of my highschool life were with him. My relationship with him taught me so many things and helped shape a lot of who I am today. Our relationship was complicated. That's probably an understatement. And working through his death also proved to be complicated. I experienced a sorrow and sense of emptiness that I had never felt before. Because our relationship was so unique with so many layers, losing him for a final time, has also been a unique loss, with many layers.
I'm no stranger to death in my personal life. In fact, I had my social worker friends recruiting me to work in hospice for years before I finally decided to apply for a position. I always said I had too many "death issues". My maternal grandfather died when I was 6 yrs old. When I was 12, my favorite Great Uncle died. I had numerous other losses that left me angry at God, and confused. In high school, I was touched by death more than any teenager should be. Almost all of these losses were sudden, or at least unexpected to me. The notion that someone can be full of life one moment and gone the next, was one that I learned fairly early in my life.
Unfortunately, I've continued to be touched by multiple deaths of friends, family, co-workers and acquaintances over the last several years.
So, when I got this call from my mom in October, who still lives in my hometown, I knew from the tone of her voice that someone I loved had died. As I tried to work through this incredible loss, I leaned on my closest friends and my amazing husband. I cried, and I cried and I cried. I slept as an escape and I had nights when the insomnia was unbearable. I'm still working through this and the burden of that grief has gotten lighter each day.
Six months later I'm grieving again...
In the Spring of this year, my sweet Grandmother, was admitted to the hospital. After several weeks, she passed away peacefully with my devoted Grandfather at her side on April 25th. This was my first time experiencing an expected death in my personal life, with the exception of my husband's grandmother. It felt very strange to me. I was caught off-guard by how emotional I was. Afterall, I knew she wasn't going to recover. I was the one asking my mom why my Grandmother hadn't been put on hospice, yet. I was the one explaining the dying process to my mother and explaining that her body was showing definite signs that it was shutting down and anything other than efforts to keep her comfortable, would be futile at this point. But even with my acceptance of the inevitable, when the moment finally came that I learned she had died, I was once again, in tears over losing someone I loved so deeply and grieving for my family. The week after my grandmother died, I spent a lot of time in my craft room. I worked through this grief by creating, by working in my art journal. I've become incredibly thankful for the therapeutic value of art over the last several months.
I had to be careful in my hospice work and was very aware of my own grief when working with my patients and their families. I relied on my supportive friends, co-workers and family. And, with time, that grief has become more bearable.
And I thought I knew how grief felt, but I've never felt this lonely...
Just as I was starting to feel like myself again, around the middle of June, my precious, loyal chocolate lab, began noticeably losing weight. At 11 1/2 yrs old, we'd known for some time, that his time with us was limited. Last December, he showed signs of advanced arthritis and was unable to walk one morning. I was a big ball of tears that morning as I took him to the vet and expected for certain they would tell me I needed to put him down. To my elated surprise, he was diagnosed with arthritis and put on medications and within a few weeks, he had moments of giddiness that had him bouncing around like a puppy again.
So, when he began losing weight in June, and his appetite decreased, and I had to fill his bowl less often, my husband and I finally worked up the courage to take him into the vet, knowing that ultimately he was dying and we would be putting him to sleep. We took a few days to make this final decision and I spent sleepless nights petting his silky soft ears, and staring into his big brown eyes, as my own eyes shed tears as I anticipated the loneliness and sadness my family and I would feel.
We took him to the vet the morning of July 10th. I wanted to be assured that we were doing the right thing, so I had the vet run blood work to determine if there was a treatable cause for his significant weight loss and overall decline. His blood work revealed that he had developed diabetes and his blood sugar was sky high. We left the vet with hope that we could manage this, knowing it wouldn't be easy but I felt capable of managing this. Over the next 2 days, our sweet dog got worse, stopped eating altogether and began to develop cataracts. I would never wish that experience on anyone. We put him down the evening of July 12th. That week was probably the worst week of my life.
Hana (named after the Road to Hana in Maui), was the epitomy of a lab. He was an abundance of energy for the first 3 yrs of his life. He knocked me over several times with excitement as he greeted me. He could clear a coffee table with one wag of his super strong tail. We picked him out from his backyard breeder (not a puppy mill) when he was just 2 weeks old. We visited him every weekend until he was ready to leave his mama and we were moved into our new home.
Hana was our baby. He was my baby. He immediately became very attached to me, and was always, always by my side. If I moved, he moved. If I got up, he followed me. If I stopped, he stopped and laid down at my feet. If I stayed up too late, he told me it was time for bed. When I came home, he was always at the front door to greet me. Several months ago, I woke up from a nap on a Sunday afternoon, and walked into the living room. When I entered the room, my husband said "I knew you were up because I could hear Hana's tail hitting the wall. When he walks down the hall alone his tail doesn't hit the wall, but when he walks with you, I always hear his tail". That comment has really stuck with me. I'd give anything to hear his tail hit the wall again.
I've always known that I would be a mess when Hana died. Everyone who has been to my house, knows how attached Hana and I were to each other. Losing him has been the saddest, loneliest loss, I think I've ever experienced. I don't feel that I'm alone in my grief, he was a member of our family, and I know he is deeply missed by all of us. But I think I really feel his absence more than anyone else, because he truly was an extension of myself. He was truly attached to me, physically and emotionally.
When I was pregnant with Taylor, I had a miserable pregnancy. I have very fond memories of lying down on the couch everyday at 4:00 to watch Oprah, and having Hana climb up on the couch and snuggle with me. At that time, he was a full grown 5 year old, 80lb boy, but I loved that he always thought of himself as a lap dog. As I looked through old pictures of Hana after he died, I realized just how attached he was to me, and then to Taylor. In almost every picture of Taylor as a baby, Hana is right there by our side.
In no way do I feel like I have even began to process the grief I have over Hana's death. I'm certainly not in denial, and I've shed more tears over his death than I think I've ever shed in my life (and I cry often), but I know that all that I'm feeling is still the initial layer of my grief. I think, with all my experiences with death and loss, I grieve well. I tend to face grief head on with a "Bring it On, let's work through this and move forward" attitude. My attitude in dealing with Hana's death has been no different.
It's not over, yet...hit with another loss
So, obviously the last 8 months or so, have been filled with loss and grief and have caused me to reevaluate my depression, which is nothing new, but has been well managed for years. When my grandmother died, I knew that it would not be long until my Grandfather also died. His existing health problems, combined with his now "broken heart" would surely cause him to want nothing more than to be with his lifelong love in heaven. And, as I expected, my grandfather's health declined after the death of my grandmother, and he died peacefully on July 27th. Just 3 months and a few days after the death of my grandmother.
Multiple losses, like I've experienced, magnifies giref. With each loss we face, we are reminded of our previous losses. That can be both good and bad. Good, in that it reminds us that we've been here before and we survived. Bad, in that we often find ourselves faced with unresolved grief if we didn't take the time to grieve before. Finally, earlier this week, I realized I had to take some time off work. All of my grief and stress has taken it's toll on me, and I know I'm not functioning where I should be. I only took a few days off, but it's some time for me to focus on myself, process another layer of my grief, and be kind to my soul. I'm so thankful I have a wonderful, supportive husband (who is no stranger to death, himself) who has quietly held me tight through all of these losses, and treasured friends who also help me grieve, listen to me, hand me tissue when I cry, and offer distractions when needed, too. And there are wonderful things that have been sprinkled in these last several months, too. It hasn't all been filled with heartache. For one, one of my best friend's gave birth, which reminded me of the miracles of life. When I've been able to peek out of my depression, I've created expressive pages in my art journal, and I've been playing with some new art mediums and techniques.
So, that's what's been going on. That's why I haven't been posting. Sometimes I feel torn about my depression, because as a social worker, I want to minimize the stigma associated with depression and anxiety, and one way I can to do that is by blogging about my own experiences. But, at the same time, depression is, well, depressing and I don't want to become Debbie Downer on my blog, ya know? I want this little corner to be somewhere that people can come and feel empowered to create and empowered to parent their child with special needs (um, yeah, that's a whole 'nother issue right now, as we face the Taylor's transition to a new school, I could write a whole other post about anxiety, and a post on grief for parents of kids with special needs and complex medical issues). At the same, time though, I want to keep things real, here. I want to be authentic. So, that's why I decided to share the story behind my absence. Grief.
I'll plan a post on specific things that are helping me get through these sad times, in hopes of helping some of you cope with whatever grief you have.
Gosh, that was a really long post for what I said could be summed up in one word.
Posted by Crafty Mom at 10:33 AM