I lost my mom in July 2012…and the circumstances were unusual ones – we weren’t terribly close (although I worked every day to make it better on my end, she wasn’t willing to change on her end – and in the end, that was ok…she did the best she could with what she had). I found out in a voicemail from a stranger that she had passed. So it was really weird. Even as I write it today, a year and a half later, it’s still weird.
Then, in October 2012, my great grandma passed – she was 103…she was very ready to go to heaven…it was still a hard loss.
In January 2013, a good friend’s hubby passed.
On February 8, 2013, one of my best friends from high school lost her battle with M.S.
And this trend continued on until late last year when the tally of people who were close to me who had passed was around 20.
On February 6 of last year (2013), I lost my voice. I thought it was a “routine” run of laryngitis or allergies. I went to urgent care and had it looked at and was told it was likely acute bronchitis. Mind you, no cough, no cold, nothing. Just my very terribly weakened voice, barely a whisper.
So I sought out my doc for a visit and he tested me for mono and strep and checked for acid reflux…all to no avail.
I asked for a referral to an ENT / otolaryngologist…which I got in to see in April 2013. I was frustrated to have to wait that long, so I started looking around for other options to see a specialist that could get me in sooner. I saw a doc in March who dismissed my case as “you’ll get better” and shooed me out the door.
I waited for the visit in April and saw the otolaryngologist who did a scope and basically was of the opinion since I didn’t need surgery that voice therapy was the next best option.
So I met with the voice therapist and she got me all pumped up, said “let’s get you in as soon as possible” and walked me to the front where I made my first appointment for 2 months later in June. Ugh!
I went to voice therapy regularly (for the 6 visits they need to diagnose the problem), participated fully in the exercises and measuring of my voice each session. I did the exercises at home and got no relief. She also did the vigorous vocal cord area massage…as they thought it might be muscle tension dysphonia. At the end of those sessions, the doctors collectively felt that botox injections were the best option for me and since I didn’t want to do the botox, they said there wasn’t much else they could do for me then. The voice therapist believes I have extreme muscle tension dysphonia (that she simply couldn’t get to relax) overlaying the abductor spasmodic dysphonia (SD). My last visit was in September 2013.
I started a course of acupuncture in November and went for 2 months and did not see any relief there, so I have decided to discontinue those visits for now.
I saw my primary doctor again and asked for a referral to get blood work done to check my thyroid…those tests came back “in normal ranges.”
I’ve seen a wide variety of other non-traditional / holistic healers and all, so far, to no avail.
Limitations…or are they?
As you might imagine, as an online business manager / virtual assistant and a speaker / trainer, I did a great deal of speaking before this condition presented itself in my life in 2013. I’ve adapted my business around the condition and I’m grateful for the current clients I have that understand I host meetings via Skype and Google Hangout in order to stay connected. I’m able to type my responses while they talk – plus, we get true face-to-face time which is also really fun. My team has also been an invaluable support to me – they are all willing to connect via various instant messenger interfaces and constantly support me. I also talk to some of my family members on Skype – mostly my dad, as before I lost my voice, we chatted a few times a week by phone…I’m grateful that he has also adapted with my condition. Those factors have made this journey slightly more tolerable. 🙂
Some of the other things that have become very difficult for me include using the phone (since my voice is barely a whisper, it doesn’t come through on a phone or via computer mic and speakers). One thing that’s a real challenge is scheduling appointments – I have to physically go in and book an appointment with my doctor or whomever, or I rely on a friend or teammate to call on my behalf. I also do not eat out at restaurants alone as the wait person doesn’t typically understand why I am pointing to my choices and I’m able to hear them. I’ve gotten a lot of very confused and blank stares when people presume that I may be hearing impaired because of my vocal condition.
I’ve recently downloaded an app on my smart phone that is a “text to speech” app and it allows me to (in close proximity) be able to speak to others. I did try it at lunch with friends this week and it was difficult for them to hear, which is why only in close proximity does it work.
I get asked a lot “how do I do it?” and told “if that were me, I’d go crazy.” As I reflect on that question and statement, I realize that I’m very strong and I’m here for a reason – I think my journey will be a path for others. I refuse to give up hope, I refuse to “play the victim” as neither are my personality…I am a fighter and I intend to see this through as I’ve done every other challenge in my life: one day at a time, ask for help where I need to, cry when I’m feeling down, ask for prayers when I need to, and know that I’m here for a reason.
As for what’s next for me…
Medically, I’m unsure of my next step, as I still do not feel the botox option is a good choice for me. I continue to research options…I’ve connected with a few groups on Facebook and it’s been great to meet others with the same or similar conditions. I’ve also connected with a support group in my area that meets 4 times a year, I plan on attending their upcoming meeting in May. I saw my primary doctor a few weeks ago and asked for a referral to a neurologist and I am waiting for that call to get the appointment booked.
Personally and spiritually, I continue to persevere and pray as I know God has me here for a reason. And I think part of it is the book I’m writing about my experience called “Rising Out of the Ashes: Reconnecting to Your Joy Through Grief.” I’m also creating a Bible study to accompany it.
Also on a personal note, I have to say that my support network has been critical for me this past year and a half…there are many people who have been there for me during this time and I appreciate each and every one of them, more than words could begin to convey.