A Mindful Monday

As I’ve wandered through the past couple of weeks I’ve realized how much I have strayed from my mindfulness practice and how much my Mindfulness Mondays helped keep me on track. Each Monday I was reminded how important mindfulness is and how to obtain it. It is time to refocus on this present moment with a few of my favorite quotes and a few photos from the desert.

Mindfulness isn’t difficult.
We just need to remember to do it.

Sharon Saltzberg

This quote is very meaningful for me right now as I remember how important mindfulness is, it is so easy to do, if only I remember to do it.

Mindfulness is simply
being aware of what is happening right now
without wishing it were different.
-Enjoying the pleasant without
holding on when it changes
(which it will)
-Being with the unpleasant without
fearing it will always be this way.
(which it won’t)

James Baraz

This quote by James Baraz is my all time favorite quote. Be with this day, whether it be pleasant or unpleasant, for it will always change.

Mindfulness means paying attention
in a particular way;
on purpose,
in the present moment,
and non-judgmentally.

Jon Kabat-Zinn

What I love most about this quote is the last word, “non-judmentally”. I am notorious for judging myself very harshly, and it has held me back in many ways. Another quote by Jon Kabat-Zinn, in part, says “Instead of ‘let it go’ we should probably say ‘let it be'”. I need to just let it be, and stay in the moment.

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Mini me update

Daffodil – Charlotte, NC
Wild Mexican Poppy – Tucson, AZ

I’m Still Here I didn’t mean to scare anyone with my last post, no I’m not closing my blog, I have just been feeling a little low lately and it’s been hard to put words together and write coherently. A little depression has gotten hold of me, but I’m coming out of it. I tried looking at everyone’s blogs today but my reader is not working right. I’ve been terribly homesick, I have a friend back home who has been extremely ill for months now and I can’t be there with her and it’s breaking my heart. I can only hope that my virtual support is helping a little. My sister hurt her knee pretty bad, I’d like to be there for her, but alas I can’t. I’m kinda sure that she wouldn’t allow anyone to take care of her, but I’d sure like to try. She’s taken care of me time and time again, it’s time for me to be the carer. And I really miss Spring in the Carolinas. Spring in the desert is beautiful in it’s own way, but it’s not like it is in the Southeast. There isn’t this sudden explosion of life everywhere! You open your door and flowers have bloomed overnight. Trees are suddenly green. It’s magical. I didn’t think I’d miss it so much, but I do. Stuart says he will miss the fall, so we have decided to go to Charleston, SC for our anniversary this year in September. Hopefully he can see a little bit of Fall weather, and we can see people we love. Looking forward to that makes me a bit less homesick and I think it helps my depression.

The Move and Service Dog About us moving…no we aren’t moving far away, we are still going to be in Tucson. This is just an inconvenience, but how we were told about it really pissed me off. Right now we are renting a house that we didn’t expect to be renting but a few months until we found a house to buy, but it ended up that we needed to wait a few months before we could commit to buying a house. We can start looking again in June…or July, I don’t remember which. Our landlord has been working on the guest house and told us he did not expect to have it completed by the time we would need to move. On Friday I was standing out by the pool talking with him for a long time about us going to meet with a dog breeder about getting a dog to train for my service dog, this has been in the works for a long time and he knew all about it, he has been excited for me. Nothing was mentioned about the possibility of then wanting to sell the house soon, or us having to move. That evening our utility bill was left on our door with a note on the envelope that said our lease ends April 30th and the guest house should be finished by then, so we need to discuss options. My stress meter jumped WAY HIGH! The thought of moving again and then having to move again a few months after that, simply threw me for a loop. I don’t blame them, it is a financial decision, not an emotional one, but it sure leaves us in a lurch. There is a possibility that we won’t have to move. They need to do some work on the house that may go into the summer, and they believe that if they don’t sell during the summer they will miss their window for the best profit because it has a pool. People don’t like to buy houses that have pools in the winter….weird. We will know in about a week, if we do have to move we’ll have at least a month to move. We will then have movers move our stuff to a storage locker and move into furnished corporate housing for a few months, that way it’s really only one move. We’d just just have our clothes and stuff, everything else would be packed and ready to go. After we came to that decision the stress was totally lifted. We decided to wait on getting a puppy right now to train, hopefully we can get one this winter. I’m still looking for just the right dog for me. I will be training my dog through HandiDogs here in Tucson, AZ. They are a hands on training facility helping you to train your own service dog. I will have a hearing and balance dog. I will talk more and more about this experience as it happens.

Migraine Specialist I saw a new neurologist who specializes in headaches. She was wonderful. She had read all of my chart before meeting me, she asked all kinds of questions that I can’t remember being asked before. Like “does sleep make your migraines go away?” I’ve had it suggested to me to try sleeping when I have a migraine, but no one has ever asked me if it worked. It doesn’t. I wonder what that means. She asked if I ever get a migraine when having a bowel movement. Sometimes. So many questions!! At the end of all the questions and realizing that I’ve tried everything out there and still have over 25 migraines a month we decided to try one of the new CGRP blocker migraine preventative medications. I chose Emgality because it has been shown to help cluster headaches too, but it is not approved by the FDA for that use yet. This medication comes in an injection that I give to myself with an autoinjector. I had the first dose on Friday, March 29th. I will write a post soon explaining more about what this medication is and my experiences with it. Please wish me luck with it. My doctor told me that her story is much like mine. I not only have chronic migraines, I have a constant daily headache that I’ve had since I was 11 years old, the day I first started my period I got a headache that never went away. My doctor told me that with this new medication she still gets migraines, she gets much fewer migraines, but she does get some. However, she no longer has her daily headache. At that moment I burst into tears. I was so thrilled for her, and the thought of not having pain every day constantly, I simply cannot fathom that.

On a completely different note, I’m getting my hair cut on Saturday. You may not recognize me. I have long naturally wavy, slightly curly hair, but it’s fine. It used to be thick until I went through menopause, sigh. The length is doing nothing for me. I wear it in a ponytail most of the time. So I’m getting it cut! Not sure exactly how short yet, I’m going to need advice from my stylist, but I think it’s going to be pretty short. I’m getting new glasses soon too, I’m just going to look so different. A new me.

Well, I’m up late because I’m fighting a gastritis attack, again. I finally ate some real food today for the first day in a week, and now I’m so nauseous I can’t sleep. I’m off to take a Phenergan and try to rest.

“Change is the only constant.” ~Heraclitus

It’s hard to come back

I haven’t meant to stay away for so long, it’s just happened. I’ve simply been feeling a bit reclusive, withdrawn, just wanting to keep myself to myself. I haven’t felt there was anything wrong, maybe I just needed a recharge. Maybe it’s because my husband has been sick twice in the last month. First he had a bad cold that set him back a week then less than 2 weeks later he came down with an awful bug that put him in bed for another week, (in between that I had a cold). It’s hard when the sick need to take care of the sick, but I think I did a pretty good job of it. I even went to three doctor appointments all by myself.

I actually felt like I was accomplishing quite a bit, but something has been off. I didn’t want to talk to people. I didn’t even realize how much time went by where I didn’t talk with people, that was a weird thing. People I normally talk with nearly every day, suddenly I hadn’t talked with in a week or more. Yeah, I’m still not really sure what has been up with that. I missed them, but I felt like I had absolutely nothing to say and felt awkward trying. I’m feeling awkward even trying to make sense of it. I simply felt I needed to be alone.

Now, I don’t know what has been going with anyone, my friends I normally talk to regularly or my blogging family. How could I have just backed away from everyone as if I don’t care. I do, I care a lot. I can only think of one thing that happened that may have sparked this, I made a comment on someones blog that hurt them. I never meant to. I thought it was encouraging, but it was not taken that way, and that broke my heart. I would never do anything to hurt another person, especially one of my blogging friends and family. However, I never meant to stay away, it just happened. I want to come back, but I’m not sure how.

I do have some news to share. Some good news about a new neurologist and some not so good news about us having to move before we planned. All things I want to share soon.

So, do I feel more connected to the world now? Not really.

Thankful Tuesday – Week 10

As most of you know I’m taking part in the Ten Things of Thankful challenge. Simply list 10 things a week that you are thankful for, but no worries if you list less, or a bit more, the point is to get everyone to notice there is something to be thankful for. If you’d like to join in, just pop on over to TToT and add your post to the list, I hope to see you there.

This week I’ve decided to get back to basics, I’m so very thankful for:

water drop. photo by w. holcombe. all rights reserved
  • Water. I keep a water bottle on my bedside table so I have water through the night. In the morning my darling husband always fills it up before he leaves for work so I have a full bottle for the next few hours before I get up. On Wednesday he took the bottle to fill and forgot to bring it back, this really made me appreciate that he does this for me every morning and that I have water available to me so easily all the time.
  • Scent Free Air. I went outside to sit in the sun one day this week and a bush was blooming. It is beautiful and a welcome sight, but it had a strong floral scent, that would be pleasant to most, but I have migraines and am very sensitive to scents; it was an instant trigger. I was very grateful that I was able to escape it when I came inside. I’m thankful I’m able to have a pretty scent free home.
  • Electricity. I’ve been through times when we’ve had to live without electricity for extended periods of time due to natural disasters, it was not fun. The biggest obstacle we had was no refrigerator. Everything in our freezer that we couldn’t eat fast went bad and we had no way to store any food or to get much food to be honest. We had no hot water, and no heat or A/C. (one of these power outages happened during an ice storm) These are all things you simply do not think about when you have electricity every day. When power goes out for a short period you are inconvenienced because you have no TV, computer….but when you have no electricity at all, you are very limited in life. There are many people who have no electricity at all.
  • Eye care. I went to the eye doctor this weekend, I’m so grateful that I am able to have quality eye care. It is very expensive, especially for my prescription. If I could not afford it my life would be very limited.
  • A home. I’m grateful I have a home. Many people do not have a roof over their head. Every time I leave my house I see homeless. It breaks my heart. I wish I knew of a solution to our homeless problem in America. What we are doing now is not working. We cannot just ignore it. It will not go away, it is only getting bigger. We are one of the richest countries in the world yet we treat our needy so poorly. We should be ashamed.
  • Transportation. I’m grateful that I have a car to get around in, even though I can’t always drive, at those times I’m even more grateful that my husband is able to take me places. I’m very grateful that I was able to drive myself to an appointment this week, something I haven’t been able to do for a few months. I plan to do it again tomorrow too!
  • A warm bed. Many people do not have a safe place to sleep. I’m grateful I not only have a safe place to sleep, but I have a nice place to sleep. I can be picky about my pillow and sheets, I’m so grateful for these things.
  • A loving husband, dog, and friends. I’m so thankful for my support, the love in my life means so much to me. thank you to all of you.

I’ll close with that today. What are some of the basic things you are most grateful for. I’m sure I left out plenty. Like the moon and sun….so much to be thankful for in this life is we just look.

but right now I have a migraine and I’m going to be grateful that I don’t have to go anywhere and I can go lay down in a very dark room.

I hope your week is filled with things you can be thankful for.

Thankful Week 9

I’m taking part in the Ten Things of Thankful challenge. Simply list 10 things a week that you are thankful for, but no worries if you list less, or a bit more, the point is to get everyone to notice there is something to be thankful for. If you’d like to join in, just pop on over to TToT and add your post to the list, I hope to see you there.

I missed last week, but that doesn’t mean I didn’t count myself thankful, it just means I had a cold and didn’t feel like looking at the computer. Achoo! Some of the things I’m thankful for this week are:

  1. I’m more thankful than I could possibly put into words that a friend of mine who has been incredibly ill is getting better. I heard from her just this morning and she is up out of bed. This is a HUGE deal!! My heart soared and I literally cried with joy.
  2. Okay I’m tempted to stop there because nothing can top number one! But I’ll list a few more things I’m thankful for just nothing is on the scale of number one. My cold is pretty much gone! It left a little bit of sinusitis bit for the most part if has left the body.
  3. I’m very thankful that this cold was not a bad cold at all. If every cold was like this one I could not complain. Well I could, and probably would, but I shouldn’t. I know how bad a cold can get and this one was very mild.
  4. I was able to get out and go to a number of places this weekend. but I was careful to sanitize my hands numerous times and wiped down everything I touched, just in case I was still contagious, but I don’t think I was.
  5. It was 80 F on Saturday so we rode around with the top off my Beetle and went to have frozen yogurt. We even sat outside to eat it, it was such a glorious day. I didn’t even notice my sniffles.
  6. I’m making chicken broth today. I’m proud that I was able to cut a chicken in half so I can make 2 batches of broth with one chicken. I have to make homemade broth because I can’t have onions, besides homemade broth is so much better. Getting a chicken on sale is just the way to go!
  7. I’ve been eating better lately and feel good about it. I did have a day where I ate way too much chocolate, but I was able to forgive myself and simply move on the next day.
  8. I’m grateful that my little doggy wanted to have a good play yesterday. She doesn’t normally do that in the middle of the day. It was just the giggle that I needed with all the doggie kisses that I could ask for.
  9. I’ve been going through a really rough time recently with high anxiety and I’m grateful that I have found a good therapist I can trust to help me through it most difficult situation.
  10. I have neighbors that have this sign in their yard:

What were you thankful for this week? It always makes me feel good to hear!

Starting to Deal with My Anxiety

I’m in the infancy of dealing with my anxiety and I thought I’d share some of the things I’m working on with my therapist. There are a number of things I’m starting to implement but the very first thing I’m to do is to understand that it’s perfectly alright for me to avoid things that cause me increased anxiety. In the future I will push myself to do things that are uncomfortable, but, right now, I’m going to just back away and take a breather from things that make me the most anxious.

Next is to make sure I’m taking care of myself, eating well, exercising when I can (something that can be a challenge for someone with chronic illnesses, but something that can help a lot I’ve found.), keeping up physical hygiene and getting enough sleep. Sleep is so important that my psychiatrist prescribed something to help for days when I simply can’t fall asleep. I used to sleep 8 – 9 hours a night without aid before the mixed mania episode now I barely make it 4 without help. I had 2 nights last week where I slept almost 7 hours without any help, that’s a great improvement, now if I can just have more nights like that.

My therapist suggested I do deep breathing exercises during times of high anxiety and have reassuring phrases prepared to tell myself.

BREATHE…IN 1 – 2 – 3 – 4….HOLD…OUT 1 – 2 – 3 – 4

IS MY BODY CALM? REPEAT AS NECESSARY

I WILL GET THROUGH THIS.

I AM GOING TO BE OKAY.

THIS WILL PASS.

I have another grounding technique that I got from a friend that I find helpful but it is a bit challenging for me, because it’s based on the 5 senses, so I do it a little differently but I think it works just as well.

You do this grounding technique by taking stock of all your 5 senses. If you can, try to say this aloud as you are processing it, if not, that’s okay too.

5 – See – What are 5 things you see around you right now? I see my computer, my water bottle, my walker, the fireplace, the rug.

4 – Touch – What are 4 things you could touch or feel right now? I can feel the water droplets on my bottle, I can feel the softness of my blanket, I can feel the ribbing on my sweater, I can feel my hair

3 – Hear – What are 3 things you can hear? (okay for me this one is different, if I can’t hear 3 things I list things that could make noise, or noises I’ve heard that I like….) Right now I hear a whistling in my tinnitus. I hear the TV is on. I can imagine there is traffic making noise outside.

2 – Smell – What are 2 things you can smell? I can smell….well not much I have a cold..hahaha…but if I didn’t I could smell my tea, I could smell my dog.

1 – Taste – What is 1 thing you can taste? I can taste my tea.

I’m doing this exercise at least once a day just to become aware of my surroundings and to make sure when I do it when I’m anxious I’ll be able to just easily fall into it and not be freaked out trying to figure out what I was supposed to do. I did that once and it freaked me out worse.

I keep a card in my purse and one in my side table at home that list this grounding technique, I admit I can never remember what comes first and then I get all anxious so it just negates the purpose. On the other side of that card I have the breathing techniques and affirmations written to remind me, because when I’m having a panic attack nothing much is really getting through this noggin’ of mine.

I’m also working on trying to be more mindful. As anyone who reads my blog knows I have focused on mindfulness for a long time, but for some reason when things started to get worse my mindfulness practice started to stray. The senses grounding technique is also a mindfulness technique that’s a good start. I’m also trying to consciously take at least 5 minutes a day to be very mindful aware…. non-judgmentally.

So that’s what I’m doing right now. As I go through this journey I’ll share more with you. I know that my hearing loss and other things in life are causing me to have a lot of anxiety at the present, but I’m not giving up. I also know that it’s not just my hearing loss. Before we moved to Tucson I was starting to really deal with my hearing loss anxiety, I was starting to get out there and push myself. I went to a couple of Christmas parties, and made some friends. I got involved in the Hearing Loss Association. I was driving again, for short distances (the traffic in Charlotte was crazy), but once we moved here my physical health took a turn, and so did my mental health, not to mention the stress of the move itself. I feel like all the strides I took are gone, but I know I can do it, I have. As a friend said to me, “We can get far going one step at a time.”

Anxiety and Hearing Loss, my story

image by w.holcombe. all rights reserved

I’m having severe anxiety issues surrounding my hearing loss. I’ve been trying to do research on the subject and I’ve found quite a few articles that mention anxiety and hearing loss but I don’t feel that they go into enough detail. Every article I found only spoke of hearing loss and anxiety with the elderly. There are many reasons one may lose their hearing other than age. I lost my hearing quickly from an illness. The articles all speak of getting a device to for your hearing loss to relieve anxiety. I got my first cochlear implant (CI) almost as soon as I lost my hearing, my assissitive devise has not taken away my anxiety. I do not know if my anxiety would be higher if I did not have my CI’s and lived in a completely silent world all the time or not, I never have. But I can tell you that my anxiety has risen significantly since I lost my hearing.

At first I didn’t realize I had anxiety due to my hearing loss. I knew I had anxiety due to the sudden attacks of vertigo so I simply attributed much of it to that. I can say that both have been a big part of my life for years now, but at this time in my life, I’m not as concerned about the vertigo. Not because I don’t have it, but because I deal with it much better. I’m not so freaked out by an attack, I can deal with it if it happens and I rarely have attacks as severe as the attacks I used to have on a regular basis. I’ve come to realize that the majority of my anxiety now stems from my hearing loss.

Many people believe that with my CI’s I can now hear normally, that is far from the truth. It also confuses people because I can hear fairly well in a quiet place, I can also hear certain people much better than others (it depends on the frequency of the person’s voice) this makes it hard for people to understand why I can’t hear under every circumstance. However it is very hard for me to hear when there are 2 or more people talking, or when a person has an accent or someone has facial hair or doesn’t move their mouth much, or puts their hands in front of their mouth…. I simply cannot understand speech in a lot of situations. Most of the time I am completely lost in a noisy environment. How am I supposed to socialize?

I often just smile and nod, or I chime in at an inappropriate time and get embarrassed afterward. Sometimes I talk too much, after all if I’m talking then no one else can so I’m not missing anything. There’s a problem there too, often people will chime in and I’m lost again, and I seem very rude. So normally I look at Stuart for cues and ask occasionally if there is something I need to know. It’s not a pleasant experience and it is very anxiety provoking. Imagine sitting at a table where everyone is talking and you have no idea what is being said. You simply eat your meal and wait until it’s time to leave. Since moving to Tucson there have been numerous times that we have gone out to eat with the family that includes between 7 and 9 people. We’ve been to extremely noisy restaurants and we’ve been to quiet restaurants, it makes a huge difference. Unfortunately, they seem to only want to go to the noisy places so I normally bow out of those outings.

When we had them to our home I did have the children sit at a different place than the adults which reduced the noise but our dining room does not have carpet so it echoes, that makes hearing harder. However, one person kind of dominated the conversation so I kept up pretty well, I did miss some and Stuart caught me up on that later, which I thought “when did that happen” but since I was in my home it was not as bad. But my anxiety leading up to that dinner brought on a full blown panic attack. I will not go through that again. I’m not sure dinner with the whole family together is worth it to me.

There are many other things that cause me anxiety around my hearing loss:

  • sleeping alone in the house – I can’t hear the smoke alarm or anything else.
  • being in a store I can’t hear when anyone is around me
  • I can’t hear when someone calls my name
  • I can’t hear when someone comes up behind me
  • I often can’t hear if someone knocks on the door.
  • I can’t hear emergency vehicles.
  • I can’t hear the GPS
  • I meet someone and tell them I’m deaf and they begin to use ASL
  • ….

I realized recently that my anxiety over driving is not totally the action of driving itself, although living in a new town and not being able to hear the GPS is pretty bad, it is also the anxiety of what happens when I get there.

The last time I drove I went to Whole Foods. a whole 1 mile from my home, I got there and was fine, I went to get a basket and found a phone in my basket. I knew I had to take it in and find someone to turn it in to. Anxiety started. I found someone as soon as I walked in the door as she was returning glasses do someone who had left them at a register, we exchanged pleasantries and I walked away not really knowing what she said but I knew it was nice and hoped I had responded appropriately. As I walked the aisles looking for my groceries I was acutely aware of the people around me but still one person came up behind me, and another came around a corner and I did not hear either before the were right on me. When I got to the register I had to tell her I had profound hearing loss and had to see her lips, she went on to say how wonderful it was that I could read lips and I have no idea what else she said, I paid for my groceries and left. When I walked outside I was still shaken but the day was beautiful and I saw a lady I saw when I went in who was eating her lunch and I decided I wanted to put myself out there for just a bit (my therapist would be proud) she was reading a real book and I commented how nice it was to see that, she said how much she loved real books and I went on my way. I only spoke to her because it was quiet out and I was sure I would know her response, and I did. At least I’m pretty sure I did. However, when I got in my car I realized I was shaking. I felt the car vibrating like it was running but I hadn’t started it. I looked around to see if big truck had gone by, but the only thing I could attribute it to was me.

When reading over the articles about anxiety and hearing loss the suggestions they give to help include getting a hearing assistive device like a hearing aid, give the device a change, see a therapist, ask family and friends to help what you need to hear easier, get a hearing dog, get involved in a hearing loss association…

So out of those suggestions, I have a device that I’ve had for nearly 6 years, I give them a chance every day. I have not shied away from situations. (Although a I have started to). I have a therapist. Stuart helps me, I’ve asked others to understand and help but most do not even attempt to help, I’m considering a hearing dog, but I need to make sure we can take on the added responsibility of caring for another dog, I have been involved in a hearing loss association in the past and I’ve looked into it here in Tucson but my anxiety simply hasn’t allowed me to do it yet. (If it’s like the last association I’m not sure I’ll feel like I belong)

Studies, sited below, have shown that hearing loss is related to anxiety, depression, social isolation, and demetia.

We need to work with those with hearing loss to help them integrate with main stream society better so they do not feel so left out. We need to help them understand they are just as viable and cared for as they were before their hearing loss.

Ryan, Cynthia. Link Between Untreated Hearing Loss & Mental Health. Vestibular Disorders Association. Sept. 13, 2014. https://vestibular.org/news/09-13-2012/link-between-untreated-hearing-loss-mental-health

DeWane, Caludia. Hearing Loss in Older Adults-Its Effect on Mental Health. Social Work Today. July, 2010. http://www.socialworktoday.com/archive/071510p18.shtml

Alzheimer’s Association. What is Dementia? Oct. 1, 2014. http://www.alz.org/what-is-dementia.asp

Boyles, Salynn. Hearing Loss Linked to Mental Decline in Elderly. WebMD Health News. Jan. 22, 2013. http://www.webmd.com/healthy-aging/news/20130118/hearing-loss-mental-decline

Rare Disease Day 2019 – Okur-Chung Neurodevelopmental Disorder

Today is Rare Disease Day 2019. Normally when I post about Rare Disease Day I focus on my rare disease, but today I’d like to highlight a disease I’d never heard of before earlier this month. Actually no one had heard of it before 2016 when Okur-Chung Neurodevelopmental Disorder a rare genetic disorder was first identified. This is important to me because of this little guy, and other children like him.

Rowan and me a just a few days after his birth.

Rowan’s mom has been a part of my chosen family for over 20 years, so when they found she needed to be close to a neonatal unit for the last trimester of her pregnancy we were all too happy to open our home to her, her husband, and their little Rowan on the way. This is their story told by my dear friend Penelope:

My son was diagnosed with autism 3 years ago at age 4. But from birth, we knew he was special. Now we know why.

Things became complicated in my 3rd trimester. I was hospitalized with high blood pressure and suspected pre-eclampsia many times, and was induced the day I passed the 37 week mark. My son was born with very low muscle tone, and what the doctors called “dysmorphic features”…low set ears and eyes with epicanthic folds. They immediately raised suspicions about Downs Syndrome and geneticists at the hospital ran the tests they had at the time, including for Fragile X. They tested his heart. They couldn’t find anything in their testing and we were sent on our way.

Feeding issues started immediately. Low muscle tone and reflux. We went to measures that included thickening formula with a special thickener that had to made at just the right temperature, and he was prescribed reflux medication by the pediatrician. Things began to improve at about 18 months.

Things on the social front were delayed and different. I remember crying on the way home from my son’s cousin’s 2nd birthday party. They are about exactly a year apart, so the birthday boy turned 2 and my son had just turned 1. At the party of similar aged children, it suddenly hit me how differently my son behaved. As the mother of an only child, it just hadn’t been so obvious to me before.

My son didn’t walk until 22 months, after 4 months of physical therapy. Then we focused on starting speech therapy since he spoke a total of 10 words at age 2. He rated very highly on receptive language but almost a zero on expressive language. We worked hard and he began speaking single words, then phrases, but would only speak at home with us and seemed unable to speak in other situations. Selective mutism was suggested as a diagnosis. We were told he had a slow to warm up temperament. We were given the “developmental delay” label and enrolled in preschool special education services. We did speech, play, and occupational therapies. Meanwhile, other issues my son had included slow growth, gross motor delays, social and emotional delays, toilet training delays, chronic constipation, periods of low energy, sensory processing differences, and avoidance of peers.

The diagnosis of autism at age 4, while difficult, was almost a relief. It felt like an answer. Something to explain all the issues we uncovered one by one and tried to provide the right support and treatment for. We tried a mainstream kindergarten public school experience for him, everyone seemed to encourage inclusion and bringing services to kids in the class and selectively pulling them out, but the problem with sensory processing and other issues of autism mean that some kids, like my son, will struggle with the distracting environment, large class size, and rough and tumble and strict standards of a public school. Luckily, we found a private school near our home that specializes in providing an outdoor focused arts based intimate environment for kids with autism and other conditions. My son is in a class size of 3 kids to 1 teacher, and the environment is peaceful – a nature hike every morning and classrooms with neutral walls and plain wood floors, very low distraction and individualized attention – and he has blossomed and learned in this school.

Meanwhile, as part of a business trip with my company (that makes medicines for rare diseases) I visited a geneticist with one of our sales reps. In that conversation in discussing rare diseases, the topic of autism came up and when she learned my son is autistic, she encouraged me to pursue Whole Exome Sequencing (WES), that amazing advances were being made. Since we’d seen a neurologist the month before for suspected petit mal seizures, we asked for this testing on our followup appointment. The EEG did not show seizures in the time period they tested, but the neurologist agreed to submit the WES testing, even though he was realistic with us that only a small percentage of those tested get a result.

February 8, 2019. The day I clicked onto the portal to see new test results. The genetic testing was back. The largest word on the page was POSITIVE.

My heart stopped for a second. I couldn’t swallow. I held my breath and for the first time, read “Okur-Chung Neurodevelopmental Disorder.”

Roller coaster of emotions ensued. Sadness that we hadn’t known this from birth – selfish in the way that it would have made the path and understanding easier for us as parents. Relief that we had an ANSWER. So few parents of children with autism get an answer. Excitement that we can participate in active current research. Amazement that our son will be on the cutting edge for genetic autism research. Fright that there’s so much they don’t know, and happiness that there is something that they do. A feeling that we are no longer shooting in the dark, and have some idea of what to focus on and check for and pay attention to in future.

So many things go through your mind when you find out your son has an ultra-rare genetic disorder that has only been found so far in 50 individuals worldwide. Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life.

Genetic testing is experiencing an advancement at rates so quick that my son’s genetic disorder wasn’t even discovered until 2016. Just a few short years ago, Whole Exome Sequencing tests were very expensive and inaccessible. As the cost decreases, more and more children, especially those with autism, are being tested. Which means more and more will be diagnosed with rare disorders and syndromes. This will be so important to so many individuals and families, providing supportive patient communities, gatherings, research, and even cures.

Happy Rare Disease Day 2019!

For more information on Okur-Chung Neurodevelopmental Disorder please visit their website: https://www.csnk2a1foundation.org

Thankful – Week 7

I’m taking part in the Ten Things of Thankful challenge. Simply list 10 things a week that you are thankful for, but no worries if you list less, or a bit more, the point is to get everyone to notice there is something to be thankful for. If you’d like to join in, just pop on over to TToT and add your post to the list, I hope to see you there.

Image from NatureHills.com

This week I’m thankful for:

  • family who care. My sister texted out of the blue because she had a “funny feeling” and wanted to make sure every thing was alright. Then a couple of days later her husband was worried because of the weather out our way. (El Nino is dumping a lot of rain on the desert) I’ve never known him to worry about me before. I hate for people to worry, but I will say, I sure feel loved.
  • friends who listen. I can only hope I listen as well as some of my friends listen to me. (I know I need to work on this more actually) I’m so very grateful I have such good friends. I may not have many friends, but the few I have are the best you could hope to have.
  • massages. Hubby got us massages for Valentine’s Day. Actually he just got us massages, it just happened to be on Valentine’s Day, but it was pure joy. I went in with a migraine at about a 6 and left with it closer to a 2…amazing. I just wish it could have lasted into the next day. But I’ll take a few hours at a 2.
  • getting my house clean. Stuart and I working together to clean the house. It wasn’t bad, but my back has been hurting so I haven’t been able to do a lot so things like vacuuming and mopping went undone. That has all changed, the house is clean and I’m a happy girl.
  • a local friend came for a visit. It was a nice day when a local friend came and spent a few hours with me, we just talked and had sandwiches. What a nice break from spending so much time alone.
  • a new pillow. I’ve been in need of a new pillow for quite some time. I finally bought one this week. I hope it was a good investment. It has a 100 night money back guarantee, so I felt good buying it. No risk!
  • library books. I haven’t been able to focus enough to really read a whole book in a while now and I’ve really missed it. Recently we got our library cards in our new town. I decided to check out their online selection so I could read on my Kindle. There are a ton of books available to check out on Overdrive, I’m thrilled. I decided to check out a couple of Young Adult books to get me back in the swing of things, thinking I could concentrate on them, and I was right! I’m so thankful I’m reading purely for pleasure again!
  • successful dinner. We’ve been trying to have the family together for a dinner since Christmas but something has come up every time we scheduled and we’ve had to postpone. (mostly me feeling ill, I hate that) We were finally able to get everyone together this weekend. Everything went smoothly despite my fears that everything would fall apart any moment, nothing disastrous happened, everyone was fed and I think all had a good time. (Anxiety is real in this girl lately, I’m thankful I did not let it ruin this dinner for me.)
  • citrus trees. It’s citrus season ya’ll! Everywhere I go I see citrus trees filled with fruit! There are local Meyer Lemons in the stores. I so want a citrus tree in my yard, as soon as we buy a house I will have a lemon tree, even it I have to start with a baby one. I adore lemons. yummm. I hope there is a mature citrus tree already there. 🙂
  • the taken for granted things. I’m so thankful for running potable water, electricity, food a plenty, a home, and love in my life. These are things I’m most thankful for each and every day and I never want to forget that. Most of us take these things for granted, yet there are so many who do not have these basic necessities. If you have a little extra won’t you consider giving a little to those in need. Remember there are many ways to give.

What are you thankful for this week?

“No one has ever become poor by giving.” – Anne Frank

Genetic Test for Medication

When I first started seeing my new psychiatrist she asked me if I’d had genetic testing to determine which medications would work best for me, I hadn’t, so she asked if I was interested. Of course I was interested! I was then given 2 swabs to rub on the inside of my cheeks and off they went to the lab at GeneSight, within a few days the results were back.

You can read a lot more about GeneSight and see an example of what an actual test looks like on their site. To see a detailed example of  test results click here. It will take you to a pdf. I was going to show you some of mine but mine are black and white copies and aren’t nearly as pretty as the actual test results, and mine has over 9 pages of information. (I think some is repeated to give more in-depth information about it, but golly, that’s a lot of information.) I will however talk about some of my results.

Sample of one page of a GeneSight report.

After receiving my results we started going though it all to see what medication therapies would be best for me. It was very surprising to me how many medications I’ve been on in the past that were listed in the “Significant Gene-Drug Interaction” category. I also found out that this test really didn’t show which drugs I would have severe side effects to. For example, all antipsychotics. There are a few that are listed as “Use As Directed” that caused me severe Akathesia (the need to constantly move) and muscle twitching, which can become permanent.

We went through all of the medications on the list for Antipsychotics, Antidepressants, Mood Stabilizers, Anxiolytics and Hypnotics, Opiods and Non-Opiods. I’m not really sure why I was tested for opioids and non-opiods but I will be taking that to the hospital the next time I have surgery. (hopefully that’s never)

I’ve been told I’m a complicated case. I’ve tried a lot of medications in the past, some worked for a while and stopped and some never worked. We started going through one that worked for a while first. Lithium. When we tried Lithium I started to show toxic signs before I got to a therapeutic dose. We tried Depakote, I felt better and got to a therapeutic dose but it caused so many side effects that I couldn’t take it. (my stomach hurt so much and caused me to have severe retching, it was most painful, and this went on while I was on antibiotics so I blamed it on the wrong drug for a long time, finally we figured out what the culprit was and I had to stop it.) So then we tried Vraylar, an Antipsychotic, almost immediately I started having symptoms of akathesia. It wasn’t as bad as it was with Latuda, but it was starting, so I was put on a drug to help control them. It did but I still had this constant hum that made me feel like it was going to start all the time and I was still a little manic. You may remember the post about me talking all the time. I saw my psychiatrist during that time and could not stop talking during that visit, it was most disturbing to me. I can’t even remember what she did to change my medication at that time, I believe she added another medication. I know at one time I was on five drugs from this one person….or was it six? I’m still on a ton, but I’m tapering off 2 so that will make it less and one of those should also take over a medication for a condition I’m being treated for by another physician, so that will take away 3 drugs all together. Score.

I’m sure I’ve completely confused you. It confuses me!

Let’s see if I can make a little more sense than I have been….yes I seriously doubt it too, but bear with me. The last visit I had, I took that gene test and was ready. I told her what I had taken before that seemed to work for a long time, Topamax, all by itself, but we got to such a high dose I has severe cognitive issues, so I’d like to add it to the Lamotrigine I’m already on, both of these are mood stabilizers, that way I don’t have to have such a high does of Topamax and shouldn’t get to the point that I have cognition problems. (I was over 400mg before now I will be at 200mg, much more doable I think) Topamax can also help my migraines and my Idiopathic Intracranial Hypertention, so that’s a great thing.

I’m also seeing another psychiatrist on the 28th for a second opinion. I’m not thrilled by how this has been handled, all the drugs just pushed on me, and at one point when I was at my worst and asked what to do if I was in crisis, I did not feel it was taken seriously. I was told to go to a certain hospital, but was not given the information. How is someone who is in the throws of a severe mixed mania episode supposed to remember what psychiatric hospital this woman spoke of to find out how to get there, and I was not in the frame of mind to ask her to write it down. I was a complete mess at the time. It’s times like that that patients really rely on their health care professionals, and too often they fail to live up to what is needed.

I’m still a lucky one. I have insurance and can actually go to a psychiatrist and get help, there are countless others out there who can’t. We often tell people to reach out when they are in pain, but if they can’t pay for help, they are simply turned away. This country treats their citizens like garbage. If it’s unsightly, throw it away.

Please support mental health facilities who treat those who can’t afford care, there are so many people who are homeless because they have no where to go for treatment. Take time to be kind.

Have you tried GeneSight? Would you if you haven’t? Do you think it’s beneficial?

I do think it’s a great place to start. It’s telling me if certain drugs metabolize faster or slower than they should, and well all kinds of things. Be sure to read more at their website if your interested.