Stream Of Consciousness Sat. Sept. 29th

Who Was I Kidding?
I’m mad. I’m mad at my body, I’m mad at the way I’ve been let down, and I’m mad that I’ve lost my freedom, once again. What am I talking about?
Singing
For those who don’t know, I used to sing in a women’s barbershop chorus as well as in a quartet. I love to sing but I haven’t done it since 2007. Recently, I heard about an opportunity to join a group called the South Island Care Choir, made up of Doctors, Nurses, other Health Care practitioners and Patient Partners from Patient Voices Network, the group I volunteer with. I immediately jumped in and said YES!! I would love to join this group, not even thinking how unrealistic this might be for me healthwise.
Well, I’ve just made the unfortunate realization that it’s not going to be feasible for me to do this, and I am totally pissed. The main reason why I won’t be able to sing? My stupid left foot and it’s stupid Haglund’s Deformity that we’ve just confirmed. I literally can’t walk on this foot for more than 10 minutes without being in agony, let alone stand on it for 90 minutes to sing. I would have to walk to the bus stop there and back to where we would rehearse, and I am NOT paying the $50 it would cost for a taxi each way. Even using my walker or my crutches wouldn’t make a big difference…I would still have to be on my feet to sing properly and I just can’t manage it right not. Plus, the only way that this Haglund’s Deformity can be managed is with surgery. I’ve already tried the other measures to treat it…ice, elevation, anti-inflammatories, rest…everything.
I am so mad at myself for getting my hopes up and then realizing that this just isn’t going to work. I wanted so badly to be able to sing again because I miss it so much…the camaraderie of being in a group environment, creating harmony together, performing for people…just everything. Ā Singing in the past brought me so much joy…I really wanted to re-create those feelings again. Unfortunately, if I’m totally honest with myself, I would end up being in too much pain and too tired to really enjoy myself and now is just not a good time to do this.
I’m going to send a note to the director and ask if it’s okay to put this off until the Spring and then perhaps re-join at that time. Hopefully my foot will be dealt with by then and I’ll be recovered from surgery and no longer in pain. My regular pain I can manage, but if I can’t stand on my own two feet with just my cane, then there’s no sense in pretending. I don’t want special accommodations, I just want to be like everyone else on the risers; a regular singer.
From my Sweet Adeline Barbershop days – the link below is my quartet Quintessence singing Marshmallow World. It’s from the Christmas CD “Jingle Belles” that my chorus Rhythm Of The Rockies put out, I believe in 2004. This was when I was living in Calgary where I was a founding member of the chorus.
In 2005, Quintessence competed in Sweet Adelines Region 26 (the All Canadian Region!) composed of choruses and quartets in BC, Alberta and Saskatchewan. Every year there would be Regional Competitions held to pick winners to go to International Competitions. Out of 16 Quartets, we placed 10th overall in the competition and we won Novice Quartet of the Year which was a real honour – the best of all the new quartets!! One of my favourite memories was when we entered the theatre after coming off stage, people were applauding as they did for all the competitors, and the reigning Quartet Champions stood and applauded for us – again, as they did for each quartet, but it made me feel so special, like our quartet was so amazing. I’ve never forgotten that feeling, something likely so insignificant to them, but has had a lasting impact on me all these years later.
And that was another reason I wanted to sing. I wanted to be able to influence other singers who maybe were in a choir for the first time. I wanted to be able to encourage and inspire someone who was trying something new for the very first time. But no…my stoopid body refuses to cooperate and so once again, that freedom to do what I want when I want is gone.
Anyway, I hope you enjoy our version of Marshmallow World. I realize it’s not Christmas yet, but the weather is changing and some people Edmonton have already had snow so it’s not totally inappropriate either.
Marshmallow World
And as for me, like I said, I guess I’ll revisit singing in the Spring and see how things are at that point. Hopefully I’ll be in a better place physically to be able to sing without pain and I’ll enjoy the experience even more.
there is always hope

Medication Frustration

It’s a frustrating thing when the medications you’ve come to rely on suddenly decide to stop working. Pain meds no longer manage your pain, and brain meds no longer manage your brain. It’s no fun to find yourself in this situation, but for People with Chronic Pain (PwCP), it happens all the time.
Drugs
There are only 3 medications that are specifically prescribed for Fibromyalgia: Lyrica, Savella and Cymbalta. Lyrica, in particular, is known for weight gain as a side effect and when I first started taking it, years back, I gained 30lbs in 2 months time. I’m a short girl (5’2″) but I have a large frame, so I didn’t want to gain anything…I’m already stocky. I told my doctor that I couldn’t handle being so heavy (I think I went up to 160lbs), so she took me off the Lyrica and put me on the Cymbalta instead. I lost some of the weight and for a long time, seemed stable at 140lbs which I was okay with. I was still working out at the time and had a muscular body thanks to my trainer and her torture sessions every week (hi Terrianne…love you!).
Fast forward 10 years and I’m still on the Cymbalta, but I don’t think it’s as effective as it used to be. The problem is, science hasn’t kept up and there is nothing newer to try. Even though I continue to take my daily doses on schedule, I find that I develop brain zaps in between and my Fibro pain seems to have increased over the years as well. Part of it might just be from ageing, and part might be from my Osteoarthritis getting worse as well. I’ve also noticed that since I had my right hip replaced and I developed this Haglund’s Deformity in my left foot, my legs are constantly achier than they’ve ever been. I’ve always put that down to walking with a different gait, but I wonder if that’s my Fibro flaring up as well.
The other medication that has been difficult to regulate is what I take for my Bipolar Disorder. I was on Seroquel for a couple of years with good success, until I started having auditory hallucinations. I would be hearing music where other people heard nothing. It took a long time before we determined it was my medication causing the problem, including a visit to a Psychiatrist to determine that I didn’t have Schizophrenia. Once we realized the Seroquel was the problem, we switched to a new drug called Abilify. That worked great for the first several months, providing me with energy that I hadn’t had before and a whole fresh outlook on life.
Unfortunately, it also brought some side effects like shaking hands and trembling tongue and brain zaps – those internal lightening-fast buzzes in the head. We cut the dosage in half and then in half again, but to lose the side effects meant to lose the benefits as well. I see my doctor again soon and I think we’re going to have to try something new. The problem is, everything new is in the same general category as what I’m currently taking, so not sure what type of success we’ll have.
Speaking of seeing my doctor, I have to say that my new doctor is lovely. Dr Penny Wilson is from Australia and is in Canada for a year at least (with the promise that if she decides to go back to Australia at the end of the year, my care will be taken over by another doctor in the practice so I won’t be left stranded). She prefers to be called Penny rather than Dr and she’s simply delightful to talk to. She’s matter of fact and down to earth, and genuinely wants to see me as healthy as possible, so on my last visit there, to get the results of blood work and to get a prescription refill on my opioid medication, she decided she wanted me to book another appointment asap for what she called a Complex Care Review. As she said, “if anyone is complex, it’s you”. How true!
Basically, this appointment will be a chance to sit down for 30 minutes to go through EVERYTHING that I’m experiencing healthwise so we can triage what’s important, what can wait, what Dr Winston, my Pain Doctor, is dealing with, and what needs to be sent off to other doctors. For instance, I’ve had ongoing pelvic pain, likely due to a build-up of scar tissue/adhesions from several previous abdominal surgeries. I do know that when I had each of my ovaries removed, there was scar tissue attaching my bladder to my bowel. When I move certain ways, it feels like my insides are ripping apart, like velcro being torn open and it’s crazy painful. This is something I haven’t dealt with yet, because there have been too many other things wrong with my body. Penny will likely refer me to either the Gynocologist or to a General Surgeon to have a laparoscopic procedure done to see if they can remove some of the adhesions so that pain can be eliminated. Yes, a surgical procedure will cause more adhesions, but if they can get rid of 90% and have only 10% more grow, then those are good odds for me.
It feels weird to be looking forward to a Dr appointment, but I think this will be one of the most beneficial ones I’ve had in ages. I’m also taking in all my medications, so we can do a review and see if there’s anything I can stop or any dosage changes I need to incorporate. Yes, Penny is very thorough and for that, I’m very grateful. I have a feeling that when the appointment on the 27th is over, I’ll no longer have medication frustrations. What an answer to prayer!!
there is always hope!