Friday, March 10, 2017

Facing Forward: Lydia

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Lydia
Location: Vancouver, BC Canada
Diagnoses & Age: 
Depression - Diagnosed at 30 (traced back to age 8)
OCD, Anxiety/Panic Disorder - DIagnosed at 30 but was happening for a long time
Bipolar Disorder - Diagnosed at 32 (traced back to teens)
Bingeing Disorder - Diagnosed around 48 (because I hid it well)
Irritable Bowel Syndrome (IBS) - Diagnosed around age 12
Asthma - diagnosed at 33
Chronic bronchitis - diagnosed at 11
Fibromyalgia - diagnosed at 34
Chronic back pain (L1-L3) - diagnosed at 33 after 3 fractures during accident
Chronic Fatigue Syndrome (CFS) - diagnosed in early 50s
Pre-diabetes - diagnosed around 55
Chronic kidney/bladder infections & kidney stones - currently being tested
Migraines - diagnosed at 16
Vertigo - diagnosed in early 50s
Hernia - diagnosed at 56 (caused during gall bladder surgery as was a hematoma on my liver)
Osteoarthritis - I thought I would give you a little info on this one. I damaged my right knee at 15 learning to ski. A doctor removed "all" the cartilage because it was damaged. In truth he missed fragments and they worked like sandpaper between the kneecap and joint. I had several procedures over the years and was told it would probably develop arthritis sooner than later. I had a bipolar related accident at 32, which caused trauma to my entire body - once again I was told to expect arthritis. At 46 I enrolled in culinary school (a lifelong dream) and halfway through I was diagnosed with osteoarthritis in my knees, feet, hands, neck, and back. I have had physio, medical acupuncture, massage therapy, and medication. I walk with a cane outside of my home and sometimes in as well. It is definitely progressing, especially in my hands, knees, and feet. I can no longer stand long hours to do catering or have steady hands for cake decorating (though I still teach a little of both). I had my right knee replaced when I was 51. I had a hard time finding a doctor that would do it at that age but when he did, he said it would never have waited another 10 years. My left knee and hip are now starting to go from taking most of the weight all these years.
How are you currently treating your condition?
My bipolar, depression, OCD, panic attacks, and anxiety are for the most part under control. However, this takes a lot of work including some maintenance meds, breathing exercises, trying to regulate my sleep, food, and exercise, as well as doing regular "self checks" throughout the day to make sure I am on top of any triggers.

I am on a boatload of medications for the chronic pain conditions (fibromyalgia, arthritis, back pain, CFS) but this is only half the story. I use tools such as pacing, goal setting, appropriate exercise (which changes with pain levels - walking in a pool is one of the best but only when I can get to one), breathing techniques, and massage therapy. Most of these were learned through 3 different pain clinics.

I am managing the pre-diabetes with diet for now.

The migraines have various triggers such as cheddar/orange cheese, caffeine, chocolate, sulphates, and MSG. I also get sinus migraines and stress headaches.

The hernia will hopefully be operated on this year and the vertigo is treated by an EMT. It is related to crystals being out of alignment in my right ear. I have exercises to do and if it gets beyond them I have to go in for a treatment.
What are the biggest challenges you have faced since your diagnosis?
Well, managing all those conditions does have its challenges for sure. The mental illness conditions can bring on chronic pain and vice versa. The IBS can be triggered by anxiety, not eating the right foods or at the right times, lack of sleep, or just about anything else. While constipated from it I get nauseated, depressed, and experience pain in my back and right leg (the one operated on).

I need to make sure I am alert and calm before I drive anywhere, especially places I am not familiar with, so I don't drive often anymore. Pain, anxiety, depression, and medication are all factors. Chronic pain and CFS also affect my going out. If it is more than a half hour trip I must consider stops to stretch. If someone else is picking me up I maybe have problems getting in and out of a car. In winter I have to be very careful of ice and snow. Even with my cane I am not very steady.

Along with asthma I have allergies to plants, dust mold, and most flowers. As well, triggers include any kind of smoke, incense, perfume, hair spray, anything scented or aerosol. This makes public places difficult. I can't stand, sit, walk, or even lay down for very long at one time. Fibromyalgia can make my clothes and hair hurt.

What are your favorite tips and tricks for managing everyday tasks?
I think the best two things I have learned are proper breathing and pacing.

One breathing technique that is kind of backwards to reflex action is when dealing with a pain situation breathe out on the pain or exertion instead of holding your breath and/or breathing in. Breathe out through your mouth slowly and steadily. For panic, breathe in for a count of three, letting the air extend the abdomen, and breathe out for a count of six, deflating the abdomen.

Pacing basically means compartmentalizing tasks into manageable  blocks of time and energy. I will empty the dishwasher (using the breathing techniques when bending down) and then take a break either to rest or do something else that uses a totally different group of skills and energy (say working on the computer). I will not do either for more than half an hour. If I need to go back to fill the dishwasher I will, and then take another break before cleaning counters, doing hand washed dishes, etc. This works for almost anything.

How do you manage to keep facing forward every day?
First, I am a woman of faith and knowing that the Lord is there for me is a great motivator. I belong to a group of ladies online who all share beliefs and chronic illness. It is very comforting to know I can go there and be uplifted.
My blog has given me a new reason to face everything head on. Writing about my challenges and my passions as been very freeing for the past 2+ years. I never thought that my chronic health problems would become a focus of the blog, but it happened almost instantly. I have a following of like-minded people and some who are looking for someone who has been through what they are to get some insights.

I have had the great honor to mentor some very special young women over the years, and that keeps me in check with my life because I want to set the right example for them. They don't necessarily have the same challenges as I, but if I can show them that I can work through this, they can attain anything they desire.

I just recently broke through a lot of emotional "baggage" from my life that was definitely holding me back from getting better and facing forward in my current life. Since working through that (and leaving some important people out of my life), I feel stronger and ready to take on whatever is next.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
The day I was diagnosed with osteoarthritis it felt like I was hit in the gut with a wrecking ball. I had just started on my way to achieving the career I had always wanted (catering) and it looked like it was all going to be taken away.

If I could go back to that day I would tell myself not to sell myself short, and that anything can happen if you set your mind to it. I don't cater anymore, but I consult - setup menus with quantities, develop recipes, etc. I teach young people basic cake decorating, even though my withered fingers can't do it anymore. I also consult on special diets such as gluten-free, etc. and have people all over the world getting my assistance on recipes.

Do you have a blog you would like to share?
Being Lydia

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