Sunday, March 12, 2017

Everything Counts In Large Amounts

I’ve been through a lot in 30+ years of life. I’ve been scared not knowing what was happening to me, I’ve felt pain, utter sadness, anger at those who would not take me seriously and countless disappointment in those who I did trust. I have been assaulted multiple times, and i’m the person who can’t always find a reason to wake up in the morning. However, i’m still here writing this blog and so if you do want to, please continue reading.

Let me just say that it seems throughout my life I have suffered from a few “weird” illnesses. I quote the term weird because incidents have boggled the minds of many doctors and the worst part, they happen out of nowhere. The two most profound medical incidents that changed my life were being paralyzed for 6 months from the legs down without any warning. No doctor could even fathom what was happening. Fortunately, my Dad did some searching on the Internet and came up with a possible diagnosis and we returned to the doctor and it was confirmed that it was likely erythema nodosum. I did recover but the toll it took on my inner core took a long time to go away.

A few years later, I had a spontaneous gallbladder operation. All of a sudden, while on vacation (while Bill was performing and I came along) out in Digby, Nova Scotia, I got horribly sick. The pain in my side was excruciating and I was sweating bullets. I was rushed to emergency by ambulance in the middle of the night. Oh keep in mind, no one tells you that out of province ambulance costs are several hundred dollars (at least it was at that time). I received a bill several months later with the sticker shock. Fortunately, my dad being a lawyer dealt with that situation promptly and I didn't have to pay anything. I have no idea how I travelled so many hours back home to Windsor, but somehow with the love and support of Bill saying I was going to be okay and distracting me, plus Skyping with my parents.

I immediately went to my doctor, where I was pretty much as pale as a vampire and frail. She took one look at me and immediately ordered a Hidascan.  If you’ve ever gone through a Hidascan, you’ll know how terrifying it is. Initial thought was the big C. Oh fun. Thankfully, no cancer, but a very angry gallbladder that needed to come out right away. The operation went smoothly, but I couldn’t move much, so here I was back in bed.  I don’t know what happened to me once my gallbladder was out but I started to develop more pain that was not-related. It was debilitating pain where I just couldn’t seem to get out of bed.

My urology appointment now (all these fun new specialists - note sarcasm) was the scariest time for me, as I had to go through my first ever cystoscopy. You’d think I’d be used to procedures as I was given cat scans, mri's, ultrasounds and even an endoscopy. Ultimately, I was diagnosed with what was considered by many to be an incurable and debilitating illness called IC, yet I given no instructions on how to deal with it. When someone phones you up at home and says as a professional that he will take care of me, one may believe there is some hope on the situation. Sadly, that was anything but the case. When you try and stand up for your rights and ask questions, you get dismissed not discharged. He figuratively shoved me out of his office and wiped his hands clean.  I even did a presentation to Windsor Regional  with the head of Urology, discussing their motto of "outstanding care - no exceptions" and how through this ordeal, how crucial it is that doctors get extra training in learning how to talk to patients, helping them navigate diagnoses and most of all, showing compassion. Being skilled at your profession is not enough. Not when you're dealing with people's fragile lives. My presentation was applauded.

Onto a second referral and at least this time I felt like I was being taken seriously about my pain. This professional was caring and respected me, but in my heart, I did not believe that he had the answers either. I went through a second cystoscopy and other painful procedures. By the 6th treatment, I was in agony and so my course of treatment was ended. I was told that there is nothing more that could be done. I could take painkillers and perhaps try a holistic way, such as a naturopath.

I was devastated but desperate. To be blunt, I was taken for a ride and lost a shitload of money on useless remedies that not only didn’t work (Panax Gingsing to rev up my energy levels and align my mental chi, whatever that meant), a homeopathic solution that when I went to the pharmacist to get it, the person was very adamant about me not taking it. When I questioned my naturopath, she was livid and told me the pharmacist had no idea what he was talking about and this would be helpful. I returned to the pharmacist and he said that he got a call blasting him for not filling the order.

Confusion bestowed me and I decided not to take it. Returning back for my next appointment, I could sense her frustration. I was advised to come see her now 3 times per week (I was only seeing her once every week at this point) and add in a bunch of additional treatments. Aside from one relaxing Mayan massage that was supposed to cure my pelvic pain (it didn’t) it was apparent that all I was to her was a blank cheque waiting to be filled. I was also further scarred when she said that I shouldn’t have had any of the medical procedures done because they actually harmed me more.

Back to bed I went. Unable to really do much of anything because my pain was just so terrible. It was like knives stabbing me. The wait to see any specialist in another city was approximately 2 to 3 years at the time, so I felt like this was the end of the road.

While I was driving with my family, we always hear the commercial of  “Do you have a Beaumont doctor?” Usually they are mentioning their superior cardiac center. However, this time, it mentioned if you were a female and had pelvic pain that they had a new women-focused urology center. It made me cry because I felt like there was help that I could get but it was just not possible.

A miracle happened one day and I was told that I would be getting into seeing the top urologist in women’s pelvic pain Dr. Peters. My parents and I went online to check out the center and also the video. Amazing! We were all in awe yet still skeptical though but at least this time, hopeful that this would be a place where I could begin healing, in an environment that was spiritually uplifting. I was scared out of my mind yet also filled with joy because I thought maybe this time I’d be told what was wrong with me. The day of, my anxiety was at an all-time high. He took the time to sit down and really figure out what was going on with me. He asked me a number of questions and gave me a vaginal examination. I told him my fears and without completely breaking down into an emotional mess, (I thank my parents for being there with me for support) I told him the story of what I’ve gone through. He told me that I was suffering from what is known as pelvic floor dysfunction. When he touched certain parts, he felt my muscles spasm and a lot of the tightness that was a cause of my pain. He said he has seen at least 10 women a day with my problem who have been to countless doctors and have been diagnosed with all sorts of other illnesses, including IC and given medication that wasn’t helping the problem at all. He told me that I would get better. He set out a plan for me with something called Myofascial release physical therapy along with inserting a low-dose of Valium to ease the muscles inside. He told me that at Beaumont, they take an integrated approach to treating a patient. You don’t just deal with the physical, you have to address their emotional state too. Before I could even ask him about seeing someone to talk to because of how traumatized I’ve been throughout this ordeal, he said that he would also like me to also see Dr. Jan who dealt with women who have chronic pelvic pain and other issues.  Again, he felt out of many other choices, she would be best suited for me.

After commuting back and forth from Windsor to Detroit every week for close to a year, I was seeing a lot of improvement both physically and emotionally.  My time came to an end where we reached a point where my muscles were working again and I felt like I was ready to move on and if needed, find a therapist in Windsor to see occasionally.  I had gone for Neuro Bio-feedback on/off for many years. Note that "Lucy" is me, I just didn't feel confident at the time to be open about my experience, so I introduced a fictional person.

I did go back to my Urologist to tell him about my progress. He was kind of weirded out that I was taking Valium internally and when I tried to share with him information on pelvic floor dysfunction, he seemed uninterested. He was happy I was doing better and if I needed to see him again, just book an appointment.  A bit disappointed but at least a better response.

I started to rebuild my life. I had hope to continue working on my tutoring business, and getting out again into the world. I was trying to cultivate new friendships and let go of the old wounds from those who abandoned me during my illness. I felt more confident and that even though this pain would most likely stay with me for the rest of my life, I could control it. I even attempted to go back to University of Windsor (third times a charm!) again after bailing out twice before due to illness, because I wanted to finish my Psychology degree, as I had over 20 courses completed.   What a joke. It’s amazing the looks you get when you walk into the disability office and sit down and ask for some assistance with your schooling (extra test time, someone to help with writing notes if I got overwhelmed in the classroom). Even after getting written documentation from my family physician, and psychologist, it wasn’t enough. I was turned away because I am not severe enough (basically I haven’t been committed and I can still resume most daily functions). Oh and the kicker, because there was no “definite” date listed when I would be fully recovered (duh, if I knew that, I would be a millionaire) I was not considered a priority. The problem with mental illness is that often it waxes and wanes. I could be fine for a while and then relapse. Welcome to life of a PTSD'er asshole. If I had a physical disability, there would be no issues. However, mental health is not enough.  Obviously, the rejection I felt was awful and so I decided that I wouldn’t go back to school.

I had a short break of happiness. And then it happened. Out of nowhere. The way life often does.

Towards the end of 2014 during the holidays, my dad fell ill with a terrible Encephalitis virus that severely attacked his brain. I knew something was wrong when I talked to him on the phone and he was saying he had to go pick up my brother (who lived downtown at the time) and go look for raisins.  What?! I told my mom to take my dad to the hospital, as he was sounding very incoherent.

Within the next day or two, his situation was looking grim and I was devastated that I was going to lose my father. Fortunately, the doctors at Hotel Dieu saved his life. However,  phoning up funeral homes and trying to get power of attorney issues sorted out was hell. We didn’t have any of this really planned out ahead of time because my dad always said “we’ll do it later.”  Obviously, planning one’s funeral is not the most pleasant of activities.  However, my dad had a habitual way of always putting these things off.

I was losing my father bit by bit. He would call me continuously in the early morning hours from the hospital to ask how I was doing and when I was coming down, then talked incoherently for a while more before hanging up. I would wake up with panic attacks. It got to the point where I needed to tell the hospital to take away the phone from his room or just block my number.  I knew he was scared, I was too.

Thankfully, as days passed by, my Dad survived. His inflammation subsided with life-saving medication and a wonderful team of doctors who worked around the clock on his case were confident enough to send him home for further recovery. If you compare my Dad in the hospital to how he is today, it’s like night and day.

I am also happy that all the things that were left “until later” are now dealt with.

Sadly I’ve started to experience some health problems again. Through blood work, my B12 levels were low, so I was advised to take a daily supplement. I freaked out because I read things online about low B12 and what that could mean. I need to slap myself in the face and not look things up. I read horror stories.

In many ways, things are starting to get better, After searching high and low in the city, I found a pelvic floor therapist, highly recommended by my doctor, and had my first consultation and internal treatment, which I felt quite a bit of improvement in my pain and overall well-being.  I also started going to counselling again because I think it's a really healthy way to progress and learn more coping techniques on a daily basis from everyday stressors to more of the bigger things that happen.

I was rushed to Hotel Dieu emergency by ambulance on my 36th birthday, which was terrifying. I was having horrible pain and obviously my Post Traumatic Stress Disorder activated and I was panicking badly.  Shortly after that, I was in ER again, this time with a new problem. They did a plethora of tests and I was advised to go see a Gastroenterologist for a follow-up. Adding to the procedures I’ve gone through, I had my first sigmoidoscopy recently. I had never heard of it before, only a colonoscopy, but this procedure involves just looking at the lower part of the colon. The prep is the most taxing part, as the procedure itself was very short. Waiting on the test results were agonizing. Thankfully, I don’t have cancer. A small “inflammatory” polyp was found and there is a little bit of inflammation in my colon - thus my abdomen swelling. Not worthy of a full colonoscopy according to the GI doctor. He said to add more fibre and I may have a sensitivity to gluten, so try reducing the amount and see what happens. He didn’t seem very concerned at all.

So where do I go from here?

There’s so much more to my story but the mask is pretty much off of why I have been rather absent and quiet, aside from social media postings on The Bachelor and stuff that distracts me from real life. For a while I was very hesitant to share this, due to the stigma of what people may see me as, the possibility of some future employer coming across my story and not wanting to hire me or finding a reason to fire me because i'm viewed as as a liability, but I would hope they would see all my other great qualities and see how far I've come. Writing is a cathartic process. I will update with any progress.

The one thing that really keeps me smiling is that I’m engaged to the most wonderful man ever. When I wear  my ring, I feel more at ease. He knows my history and has worked hard with my family to figure out problems and find solutions. No conditions, just unconditional love and support. He takes me to my appointments and goes into the doctor’s office with me because I pretty much blank out.  He strives for me to become an advocate for my health and take charge of it. He also has no problem fighting for me when I’m feeling too weak, and has proven time and time again that he is in this for the long-run.  He’s my rational rock!

Other things that are personally helping me:

-Mindful meditation tapes before bed
-Focusing on positive things that are going well for me
-Watching movies
-Work outs (gentle ones and I have a new app for my phone from Carrot Rewards that tracks my steps to keep moving and I earn Scene points)
-Spending time with family (eventually friends when I feel up to it - thank you to those who are still there for me and check in to see how i'm doing!)
-Positive affirmations
-Physio for pelvic pain
-Volunteering my time for a mental health advisory committee

So sharing this part of me is part of the healing and where I’m aiming to be. You just have to as my family motto states ‘never give up.’