WHY THE HIDDEN PAIN?
Let me start off by introducing myself. My name is Kathy, I’m a wife, mother and grandmother. I’ll be 65 (2018) in a few months, and was born in Santa Monica, CA – raised in Torrance, CA. I attended West High School – Torrance.
Why “The Hidden Pain?” I wanted to share how pain has impacted my own life as well as chronic illness. I felt this would be a good way to let friends/family know how I am doing. Keep them up to date. We want to educate the public because you do not always hear about us. My goal is to simply show you what I deal with on a daily basis. We might have to cancel appointments/ lunch dates at last minute. We may not feel like talking on the phone but please understand it’s not you, it’s us! Sometimes it’s an effort just getting dressed and beginning our day.
In 2004, I had a home based business, and had noticed some personality changes in me. I wasn’t sure what was going on with me until it all started coming together. They diagnosed me with Type 2 diabetes. We aren’t sure how long I had it as I had none of the typical symptoms you see in a diabetic. Moodiness and pain were my only real symptoms. Learning I had diabetes was a huge blow. Our father (now deceased) had Type 2 – as does our youngest brother.
During this time, I had decided to switch doctors. Although I liked my physician – I thought perhaps it was time to change, and go with a female doctor. I was having so many other issues that needed to be addressed besides the diabetes. I was in and out of the hospital back in the early 2000’s with my legs. My Internist, decided to do a full panel blood test on me, and she listened to all my concerns. She had me see the Rheumatologist who was in her group. Dr. L was thorough with me, and I FINALLY got a diagnosis. I had Fibromyalgia. When he touched me in certain areas, I literally jumped. Literally jumped. We refer to those areas as “pressure points” So, with my Type 2 Diabetes – I now have Fibromyalgia.
As time went by, I was diagnosed with Hypothyroidism, mild Peripheral Neuropathy, Carpal Tunnel, Sleep Apnea, Chronic Venous Insufficiency, Fuchs Dystrophy Syndrome (cornea disease of the eye), Degenerative Disc Disease, and Complex Regional Pain Syndrome or CRPS, formerly known as RSD or Reflex Sympathetic Dystrophy and Osteoarthritis. I know, seems like a bunch of hooey but this is what I have been dealt with, and I have learned to adapt. Boy have I learned to adapt. I’ve had no choice.
I’ve been hospitalized three times for cellulitis. In 2008, I had back surgery at L5 S1. Recently in 2013, I had a procedure in both legs where they had to close off the bad small veins and reroute them so my blood could get to my heart like it should. I know it’s really hard to grasp how one person can have so many different health issues but I can assure they have been documented by my physicians. I have learned to manage my life the best that I can.
You won’t see me crying in front of people or having my meltdowns. We really do look like regular ordinary people, and when we go out, we do put ourselves together. I do my hair, put make up on, and you would never know I was in severe pain or chronically ill. We often hear, “But you don’t look sick.” I can’t tell you how many times I have heard that, and continue to hear it. You cannot judge a book by its cover correct? Well, you can’t judge a person by what they look like on the outside. Looks are very deceiving and there are many of us out there.
My quality of life was actually saved by medication partially. I have been on the Fentanyl patch since about 2005. I am on a low dose. I can tell you it keeps my pain under control – I am not completely pain free for sure. I now have a breakthrough medication that was given to me by my pain mgmt doc recently. When I do anything, like have friends over for dinner etc. it takes me at least 2-3 days to recover. Will I give up my social life as little as it is? “No” What I need to express to friends/family – is that it takes me some time to get back up and functioning, that’s all.
I did give up my business in 2004, and have not worked since. Never collected disability. I do get out, and do some gardening, make candles/spa products (as a hobby), and cook when I am up to it. I have a very supportive husband and friends who have been with me every step of the way. I am blessed to have good insurance.
I use to run, exercise and take good care of myself. I have never been a smoker. I would have a drink when out with friends but I gave that up a long time ago especially when put on pain medication. I believe stress as well as being exposed to toxic chemicals (Benzene/Toluene) where I worked for close to 16 yrs. played key roles in my health issues.. Is it coincidental that 3 gals that I know of for sure got Breast Cancer that worked with me? Also a male employee was diagnosed with Lymphoma. Do I blame anyone? No. Sometimes you have to put the puzzle together to understand what on earth happened. Of course, genetics also played a role as both our parents died at an early age and suffered from different illnesses. Perhaps I just have bad luck?
Hidden Pain is just that – “Hidden” and you just can’t see it.