6/05/2017

Living with PsA 1



I have an auto-immune disease called psoriatic arthritis, PsA for short. It is similar to rheumatoid arthritis and many other autoimmune diseases you may have heard of (such as MS, Lupus, ankylosing spondylitis, scleroderma, etc.) in that it is not contagious, but involves the body attacking itself. There are many theories why a person gets this disease but no definitive answers; some studies suggest onset after particular illnesses, such as strep throat, and new work being done links autoimmune diseases to overall gut health as well. There is certainly a genetic component, and many of these diseases run in families. Some researchers suggest stress can trigger an onset, or make one worse.

PsA often (but not always) starts as psoriasis, a skin condition characterized by large flaky plaques, scabby dry looking spots, found frequently on knees and elbows. In my case, I had psoriasis as a teenager, but it took a different form: I had small plaques on my scalp (nickle sized patches that were like oily greasy scabs, treated with coal tar shampoo), thick calloused feet, and weeping finger cuticles that would never heal. These are all classic PsA forms, too.

I spent a lot of time in the sun, as a child, and my disease then was fairly mild. It went into remission for several decades, only reappearing in my 40's. It started as a skin condition, but worse: this time, I kept getting what looked like a spotty red rash on my arms (which I now know is the guttate form of the disease.) I kept thinking I was allergic to something I was touching, like my watch or jewelry, and that was causing the rash. I also had itchy hives on my torso and face. I spent 12 years going from doctor to doctor, seeking a diagnosis for the rash (and ignored all my other health problems: exhaustion, weight gain, kidney disease, swollen knuckles, painful joints, and more.) I had a hysterectomy. I had a dozen treatments for kidney stones. I was told I had rosacea, scleroderma, or lupus. The first rheumatologist I went to told me he had no idea what was wrong with me, and that we should "watch and wait" for what, I don't know. The second rheumatologist I went to diagnosed me instantly from my finger nails,  and was shocked that I'd gone so long without treatment.

I've spent the years since then on one medication then another, trying various diets and other health treatments. My personal list of co-morbidities grows daily - I call it "the disease of the month club-the gift that keeps on giving." My story is not unusual and I belong to a dozen or more Facebook groups that share symptoms, treatment info, personal experiences, and more - as there are w many diseases out there. So many folk have it worse than I do, and I have it moderately bad. I write this here to share a few things I have found that help. Not cures - just lesson the discomfort.

I don't claim anything is going to sure PsA......just help you feel better while dealing w it.

https://www.theatlantic.com/health/archive/2014/03/science-compared-every-diet-and-the-winner-is-real-food/284595/?utm_source=atlfb


Eat clean
Various doctors and groups are always touting this or that fad diet. Vegan, gluten-free, paleo...whatever. What I know is that eating clean, that is, eating real food that is minimally processed, that has some resemblance to actual plants or animals, from all the basic food groups / proportions you learned about as a child, is the way to go. I started eating better- more intentionally, reading labels- a few years back when struggling w kidney disease. It turns out that organic protein bars and too much sodium in my diet was the culprit, and you really have to pay attention bc sodium is in everything, even frozen chicken parts bought at the grocery story. When I am on the wagon and paying attention to my diet, I feel so much better, it's like night and day.....so I just try to eat clean as often as I can. I call my diet, which is based on a Mediterranean diet, as being "90% vegetarian". Fruits and veggies, whole grains, legumes, little bit of dairy, seafood, almost no red meat, and healthy fats like olive oil. No processed food : chips, bread, cheese foods, hot dogs, ready-made meals, frozen dinners, canned meal kits, soups, etc. Gave up coca-cola cold turkey, and that was hard. Read the labels - all salt. I've cut way back on sugar, salt, fats, and red meat most of the time, but treat myself once in awhile. I'll have a big prime rib for my birthday or something, at a high end restaurant. But that's it.. Drink alcohol in moderation. I eat a little bread once in awhile but only really good high quality bread. (Read the ingredients on a loaf of typical sandwich bread sometime....) Ask yourself: Is it worth the calories? Sometimes, the answer is , "yes." It's gotten to where if I eat a bit of junk-food, I feel sick. Shop the rim of the grocery store, it's cheaper anyways. Teach yourself how to cook the things you like to eat. Make good choices when you eat out: Whataburger has a fabulous grilled chicken cranberry salad. Choose Panera over Taco Bell. Avoid sugary drinks sweetened w corn syrup. If you do this for two weeks, I promise you will feel better and even looking or smelling junk-food will gross you out. Your skin and hair and eyes and joints will thank you, as will your liver and kidneys.

Pay attention to what you put on your body, as well as in it
PsA is a skin disease as well as a joint disease, and your skin is your largest organ, so it makes sense that you should be careful what you feed it. For years before I was officially diagnosed by a dr., I used organic soaps, lotions, shampoo, makeup, cleaning products, etc bc regular commercial grocery store brands made my skin itch. People around me thought this was just an affectation on my part, but the difference was real. Hives vs no hives. Experiment with different brands to find what works for you; expense is not a guarantee of effectiveness. Many people swear by Aveno, Pears glycerin soap, and many unscented mass market products. Some people hate Dove soap, but I like it and it works for me. Even high end brands like Kiehls, although it smells divine, dries my skin out. Mrs Myers is my go-to pump soap and household cleaners; I will try other brands but always return to it. Some folks swear by Kiss My Face and other natural store main brands, but it dries my skin out. I can't really tolerate body care products other than Ahava (from Israel) or Korres (from Greece), both of which I discovered during a makeover at my local Ulta in Dallas, Tx - the lady dolling me up said my skin was too dry as she prepped my face for the makeover, and I needed to try these skin care brands. She didn't sell me the makeup she was hawking, but she sold me on the skin care products she wasn't. Both Ahava and Korres make wonderful body wash shower gel products that soothe my inflamed skin. I soak in Ahava mineral salts and wipe off my eye makeup with the ultra gentle non-alcoholic Korres milk protein wipes. I hope these products never go away bc I can't live without them. Ulta stopped carrying them so I buy them now on amazon or ebay. I am sure there are many other mild, non-synthetic chemical brands out there that I do not even know about.

Note: I get no endorsements, fees, samples, or otherwise, from the products I recommend. I am not a doctor or a medical professional.  I do it solely bc I have found these things work for me. I do not claim medical cures, just as ease to the suffering. I encourage you to try various brands and find what works for you.

https://www.ahava.com/

https://www.korresusa.com/

https://www.mrsmeyers.com/

Mrs Meyers is sold at my local drug emporium and other natural food stores, and easy to find. I have tried several brands of natural castille soap, but have found that the spout oozes and leaves a mess on the countertop.

Other irritants
I have gradually swapped out, over time, synthetic clothing and household linens/fabrics for more natural fabrics or brands or items. This started years ago when I lived in Houston and it was 90F with 100 % humidity there for 10 months of the year. You can't wear synthetics living in a tropical rain forest like that bc they stick to your skin like wet saran wrap. Cotton and linen, especially, may be wrinkled in that climate but at least wick the moisture away. I used to dry clean all my clothes but decided that I didn't want dry cleaning chemicals next to my skin, either. I decided I could live w wrinkles, and after a summer in France visiting a friend of mine, I learned how the French do their laundry: they use washing machines like we do, but not dryers. Nobody has electric or gas clothes dryers, they just hang everything out to dry. (In the winter, they hang it indoors, in a basement or hallway.) It saves energy, it's "green", and as long as the pollution isn't too bad where you live, it smells divine. If you take a wet cotton or linen shirt out of the washing machine, shake it out till it snaps, put it on a hanger, button it up and smooth out the collar, etc, it will dry in a way that is wearable to work without having to iron it.

http://www.brahmsmount.com/blog/white-paper-why-linen/


How do I afford high end expensive linen clothing and bedding on a teacher's salary, you ask? I have been a thrifter for a long time - most of my life. Sure, I dig through thrift shops, explore Dillard's Basement (we have a regional center here in DFW, that pulls from the entire USA), Nordstrom rack, and similar retail. But bc I like designer brands and my local thrift store is filled mostly with WalMart wornouts, I shop on ebay. It's the thrift store to the world. Just do a search for your size and item and include the word "linen". For example, "women's linen shirt M". See what pops up and shop your price points. The beautiful thing about linen, especially buying second-hand, its that it grows better with time, and doesn't get worn out as cotton does.

You spend 1/4 of your life asleep, (or more, if you are sick all the time) touching your bedding, and commercially raised cotton is one of the most heavily pesticide use products on the planet. West Elm sells organic cotton sheets and bedding at reasonable prices.....I figure, why not? I can also find new sets of these on ebay for less. I did splurge on a new set of linen sheets by linoto (amazon) - which are guaranteed to last a lifetime. They are divine, especially in the summer, bc linen wicks away the heat and moisture.

Air that I Breathe

Not just a popular '60's song by The Hollies, air quality is a really big issue in DFW. We have ozone alert days in the summer where the pollution is so bad people are advised to stay indoors. In spite of the fact that our population has doubled in the past 20 years, no new roads have been built, which means more cars, sitting in traffic, more pollution....we are on our way to being L.A. As our air quality grows worse, new oil and gas wells/processing plants continue to be built on the perimeter of the metroplex....IDK why.

Trying to control what I could, I emptied my house of volatile organic compounds, or VOCs, and I wish I could do the same at work. VOCs are found in wall board, any sort of laminate, cheap furniture that is made of manufactured or pressed wood products, kids toys, paint, fire retardant finishes on fabrics, you name it. You can buy low VOC paint now, and I used it last time I repainted - fewer headaches from off-gassing. Costs the same as regular paint. Most of my furniture at home is hand-me-downs from family and treasures found from thrifting, antiquing, and world travels, w old varnishes that may or may not contain lead but hey, you gotta choose your poison. My work place is a nightmare - it's been 6 years after the new school wing was built, where my classroom is, and everyone who works there still has red stinging weeping eyes, constant sinus and bronchial infections. Not just teachers, but students, too. You can feel the acidic waves hit you as you enter the hallway in the morning, it slaps you in the face and your eyes tear up. I have asthma all day at school that goes away when I am at home. Another teacher friend has black mold growing in her classroom wall, spouting mushrooms. She just paints over it each year, bc she has reported it yet admin does nothing. Year after year. We try to put live plants and air cleaning machines in our classrooms, where we spend all our waking hours, but they help very little. I am sure OSHA would have a filed day in there but we are not allowed to complain. Gives "working in the coal mines" an entirely new meaning.


No More Worlds Left to Conquer





At my end-of-the-year teacher review conference this year, my administrator asked me what new classes/ certifications I was going to pursue this summer. (Thinking to myself, "Hell, none, I'm just skiving for the next 18 months till I can retire.") I said, "Well, this is my 30th year of teaching English. Not to be arrogant, but I am the only member of my entire department who has a master's degree. I am also the only member of my dept. who is certified in sp ed, autism, reading, gifted and talented, library science, and history/ soc stud. I am the only one who has been a dept chair, a testing coordinator, an admin for sp ed, and has taught every grade level both on level, remedial, and advanced/ AP/honors. I have been to every single teacher training "in-service" offered by every school I have ever taught at, as well as the Texas Humanities Institute, the AP Institute, TWU, UNT, SMU, not to mention the state of Maryland MANCEF. I have passed the teacher certification exams in Ca, Ny, Va, Md, and Tx. A few years back, I went back to graduate school and earned a second master's, in literature. There really is nothing left for me to study, as pertains to my job assignment, unless you want me to start working towards math or science." He looked at me like I am a trouble maker and says, "Well, you have to put something down. You have to fill the box on the form." So I wrote down some b.s. about continuing my education and training. What do all the teachers put in that box who have never accomplished any of these things? I forgot, momentarily, that we were supposed to lie about that stuff. No one ever follows up the next year to see if you did it. 

And Alexander wept, bc there were no more worlds left to conquer.