Sunday, December 11, 2016

My 2016, part I

What a ride 2016 has been. We all know what happened in the news—but we don’t very often know about each other’s lives.

At the start of the year there was a memorial service at which I said goodbye to a woman that I called “one of my hierarchy of mothers.” She wasn’t my blood relative, but she was definitely a family member to me, and one of my favorite people. She was the last of the adults around whom I grew up.

Jennee in the 1950s

Jennee was intelligent, funny, interesting, beautiful, independent, talented—and most definitely fashionable. I remember leafing through her Harper’s Bazaars and stopping into the most fabulous boutiques with her. She would try on a coat or pair of shoes, parade them around the store like a model and, with the greatest discernment, choose just the most stellar. (She was like that with furniture and art too!) Some years ago, Jennee gave me many of her items of clothing from the 1960s and 70s to sell. I’m so glad I saved out her sailor-style coat for myself.

Two days after Jennee’s memorial, I had surgery on my right hand. 

Let me go back a bit. Late in 2014, I was stepping up onto a riser with my French horn, and instead of landing on that riser, I fell backward onto the edge of a lower riser. This was at a concert of the Spokane Symphony with a full house in the art deco theater the orchestra calls home. The good news is that I saved my irreplaceable horn from damage, the bad news was that I went to the E.R. I was pretty badly injured.

In the spring of 2015, I woke up one day barely able to move. My hands felt like they were broken, both painful and tingling. My shoulders and elbows hurt, my hips hurt, my knees hurt. It was supremely challenging to get up out of bed. I went to my doctor, who sent me to an orthopedic surgeon, who sent me to a hand specialist and someone to test the nerves in my hands, along with putting me into a very long queue to see a rheumatologist. My blood pressure had spiked 30 points.

When I saw the rheumatologist half a year later I had gotten pretty used to aches and pains, resting when I had to, changing my life around to manage energy lulls. The rheumatologist diagnosed psoriatic arthritis along with osteoarthritis in one hip. I’ve had psoriasis for 20 years so this is kind of predictable. An injury or illness can trigger the arthritis side of psoriatic disease, and that fall at the symphony may have been the catalyst. Psoriatic arthritis is an auto-immune disease that can be treated but not cured. It has five “flavors” (none of which are peppermint!) and I have experienced a spectrum of the possible symptoms. I’ve got spondylitis, dactylitis, tendinitis, bursitis, blah-blah-itis...I can’t even remember all the itises.

Have you ever noticed how many vintage fashion items have back zippers and/or buttons? I have spent a year and a half not easily reaching anything back there—not zippers, not buttons, not my hair—all things I used to take for granted. I usually can’t put my right sock or shoe on without stretching for awhile. 

The nerve doctor said I had carpal tunnel syndrome, and the hand specialist said I had trigger finger. After trying a few less drastic things, I scheduled for surgery to alleviate the excruciating pain in my right hand. Although there is still some pain, my finger is much better from that surgery. So chalk up one positive from early 2016.

I’ve seen a naturopath, spoken with an old family doctor, gone to months of physical therapy, joined the YMCA for exercise. I gave up eating certain foods that I am sensitive to. I have taken a medication that weakens the immune system and can severely damage the liver, so I quit drinking alcohol. My weight has gone up even while eating better and exercising more. Eyes can be affected by psoriatic disease and mine have been painful and reddish at times. I sleep sometimes 10 hours a day, and am still tired. 

In mid-June, with sudden pain in my side, I wound up having a very infected appendix out. Again, something to chalk up on the positive side. Good riddance—but most of all I felt that having that infection out of my body would help my psoriatic disease. My rheumy agreed I should give it a try, and I spent a few months without the scary medications. 

Unfortunately, the psoriatic disease didn’t get better. In the meantime, when the standard EKG was done prior to my appendectomy, it was abnormal. Following up, I found out that I have a partial right bundle branch blockage, a small interruption in the electrical firing of my heart. Psoriatic disease can cause cardiovascular problems too, so this may be part of my heart’s problem, or it may be exacerbating an existing issue. 

This week, I started a new class of medication for my psoriatic disease. It may or may not work, has some very serious possible side effects, and has to be self-injected, but I am happily giving it a go. I am so eager to have a bit of my good health back.

Why am I writing this? I don’t believe in making excuses, and I don’t need anyone’s forgiveness for not being fully on. Life is hard for many people, and some are making it without a wonderful partner like I have in my husband. I have caring friends and family. I have medical insurance and good doctors. I’m not complaining, just explaining. Well, maybe I’m complaining just a little...

So what have I been up to for denisebrain this year? I have found plenty of glorious clothes that I am dying to show you. I have a book mostly ready to be published. I have a bright, shiny new website that is almost done. I have met so many wonderful people. I haven’t been able to do as much work, but I have done some good work.

I will show you some of the happiness of the year in my next post...there has been plenty!


Theresa Campbell said...

Wow, Maggie. I am so sorry for what you have had to go through this past year. You always appear so cheerful and serene in your photos. No one would ever have guessed what you were struggling with. You're quite a brave and remarkable woman, with a great attitude. Am sending tons of healing thoughts your way.

denisebrain said...

Thank you very much Theresa! I have to say, it makes me feel much better knowing that I don't appear compromised in spirit.

maria osullivan said...

Thank you for sharing this Maggie. I was diagnosed with Rheumatoid arthritis earlier this year which mainly affects my hands so i totally know how you feel. I self-inject with Enbrel now. Only downside is that I cannot drink champagne like I used to LOL! Vintage fashion is a great antidote. I hope 2017 is better for you, regards Maria, Australia

Lynn said...

What a year! I wish you all the best in your quest for better health!

denisebrain said...

Thank you Lynn, I appreciate your good wish!

I hope your year ahead goes easier too, Maria, and I hope the Enbrel holds your RA back. I've started Humira, Enbrel's cousin. So true that vintage fashion is an antidote, not only because we love it, but because there are varied things one can do if not able to, say, lift lots of clothing onto racks.

Julie Spilker said...

Darling Maggie, thank you for sharing more Jennee memories! I wish I had her purple Doc Martens, but am grateful to have her navy peacoat and the opera cape Laura sewed for her. And a few lovely things from her travels! I am so sorry to hear of your health woes; I know too many people with immune diseases these days! It's a journey of ups and downs and I wish you mostly ups!! Happy holidays, enjoy your time away and all the best in the new year! Xoxo

denisebrain said...

Julie, getting to know you and the rest of Jennee's family has definitely been a positive for me this year! Thank you for your friendship and warmth to me.