Dietary Changes and Food as Medicine

For as long as I've had health issues in adulthood, I've known that diet and eating habits can affect health outcomes.  But like so many, I've struggled with cravings, convenience, and the ability to pay for the foods that are the most nourishing.  RAD/RA & FMS have forced me to address the issue in a more urgent way.  Interestingly, my diagnosing rheumatologist never discussed diet with me.  In fact I did bring up the topic and her response was "eat whatever you want."  My acupuncturist suggested an anti-inflammation diet and oh-so-slowly I've been making an effort to decrease certain foods.

I love carbs!  They're cheap and tasty.  A bowl of cereal with 2% milk is my favorite go-to snack.  Sugar cereals have never been my favorites.  My palate usually migrated to bran cereals, oat based cereals, and anything with raisins.  Toast or sandwiches are also super yummy to me.  We have purchased only whole grain organic breads and cereals which has been an improvement in terms of health but I have still eaten too much of that stuff.  Organic whole grains doesn't replace the nutrition that lots of veggies, fruits, and healthy proteins can provide.  

In the last few months I've been experimenting to see if this whole "food as medicine" thing is legit.  I've had days where I ate mostly veggies and fruits or days where I ate lots of sugar foods and grains.  Here are some conclusions I've come up with:

• Whole wheat doesn't bother me as long as I only have one serving a day.
• Refined sugar and high fructose corn syrup is the enemy!  
• Greens like chard & kale are soothing on my stomach.
• Protein at every meal is extremely important, especially at breakfast time.
• Ground flax helps me poop.  This is a very good thing!
• The more caffeine I consume, the more tired I become.
• Too many carbs in a day aggravates my IBS & Endometriosis symptoms. 
• Fermented foods are wonderfully neutral on my body.

Now I don't at this point know if changing my diet will eradicate all my symptoms and pain, but I'm going to keep exploring and moving towards a more healthy diet featuring higher quantities of vegetables, fruits, and lean proteins.  My intake of carbs needs to be limited and refined sugars must be banished.  Of course organics are the ideal, but as an RN recently told me in an email, it's "better to eat a lot of whole foods and vegetables, even if they're conventionally grown, than to try and buy organic produce but have to fill the rest of your cart with cheap processed foods to stay in budget." 

As the author of this here bloggie I've made the executive decision to include healthy, inflammation reducing foods, recipes, and resources that can help heal our bodies and ailments.  In the blogroll I'll include blogs and websites that also aim to help heal illness in relation to food.  I look forward to this exploration & invite your feedback.

To kick off this new dimension, here is my wife's recipe for kale chips.  They're actually way more tasty than potato chips and feature turmeric which is an anti-inflammatory.  Enjoy!

Wifey's Kale Chips

1 bunch kale

1 tbs crushed raw pumpkin seeds

1/4 tsp crushed red pepper

1/4 tsp tumeric

1/4 tsp cumin

1/4 tsp onion powder

1/4 tsp garlic powder

1/4 tsp ginger powder

1/2 tsp honey

1/4 tbs apple cider vinegar

1/2 tbs water

1/4 tsp Braggs Liquid Aminos

1-2 tbs olive oil

Heat oven to lowest temp (around 200 degrees).  Combine all ingredients except kale and stir well.  Coat kale with mixture.  Bake for 15 minutes on non-stick cookie sheets, checking on chips around 10 minutes.  If you don't eat them all right away, store in air tight container with a piece of bread to absorb moisture.

      

I Can Walk...a Little Bit

Yesterday I saw a man who I like to refer to as magical.  He is my orthopedic chiropractor & it is because of him that I have been able to walk fairly smoothly for the last six years.  Before RA/RAD became my primary illness du jour, I had a slew of other things (just read this & minus out RA & Fibromyalgia to see what was wrong with me before September).

Plantar fascitis was the loose diagnosis of my ankle issue but orthopedist after orthopedist could never figure out what was really wrong.  My ankle started hurting with mild swelling about 13 years ago and the pain got slowly got worse in stages.  The first stage was not wearing high heels everyday (which I had done for work purposes) and instead wearing well made but cute flats.  Then I couldn't wear high heels at all.  A few years later I couldn't wear any dress shoes including flats.  Soon after I couldn't wear socks with elastic at the top.  Finally, after only being able to wear tennis shoes or Keens, I had to wear an elastic support brace everyday.  But the day came when even those measure weren't enough and I was fitted for a stiff custom made plastic leg brace that immobilized my ankle completely.  It looked a lot like the picture below but with no cute colors or butterflies.

Yet I still had no real diagnosis of my leg issue other than the specialists guess that it was congenital, permanent, and likely to get worse.  Before I even got to debut my sexy brace, Portland had an unexpected and sudden heat wave.  Within hours not only did my ankle triple in size, but my whole left leg did too.  I happened to have an acupuncture appointment that day and hobbled in only to see a look of horror on my doctors face.  After our session was over she gave me the office number for the chiropractor I now see.  She said he was amazing and since my only other choice for help with my balloon like leg was another medical doctor who would shrug his/her shoulders and fit me for an even bigger brace, I went to Dwight in a state of murky hope.

That first visit was awful.  Well actually the visit hurt but it was the evening that was dreadful.  I had been to other chiropractors before and had at times left in worse shape that I had been in before.  In fact I often referred to them as quacks.  Dwight poked and pushed and pulled at parts of my body that I didn't even know was in pain until he touched them.  He had to see just what would be hurting or better when I saw him again a few days later.  But this meant unbearable pain in the midst of Portland's moist heat.  A "special friend" had to come over that evening and placed iced towels around my entire leg to reduce the pain from swelling.  When I went back I told him I didn't like him very much because I hurt so bad.  He said "okay" and went about adjusting me.  After he was done, I realized I wasn't clenching my teeth in pain anymore.  There was some real relief.  But we were not done.  The heat caused such a serious reaction of swelling/pain that I had to go on short-term disability at work for six weeks.

Over those weeks I saw Dwight twice a week for adjustments and with each appointment I got better.  When I was finally ready to go back to work, I gave him a hug and thanked him for his help.  What was especially great about the experience is that I no longer needed the stiff plastic brace I had just weeks before, been fitted for.  Thanks to Dwight I only needed my Keen shoes and the elastic ankle brace.  Since then I only needed to see him about 2-3 times a year for the last six years..

But now I need my magic man again.  Thanks to the RA & Fibromyalgia my entire body is out of whack.  The RA has exacerbated my ankle condition.  The Fibromyalgia...well that just sucks, especially in  my neck.  Sometimes I get migraines from the neck pain.  Before this I had never had migraines.  They are terrible because when I get them I can't see and sometimes I throw-up.  And they can last for days making it difficult to do anything, especially tasks that involve looking, moving, or talking.

Since getting RA my ankle is swollen whether I wear a brace or not, so I just rock a fat ankle all the time.  But a couple weeks ago I started getting pain that seemed to dig into my heel and shoot up my leg into my hip.  After a few days I knew who I needed to call.  I did have to wait over a week to get in (because he is just that awesome and that busy and what's really cool is he doesn't even need to advertise because he sees people only if they have been referred or knows someone who goes there) but today I was able to walk three whole blocks without shooting pain.  My ankle looks less swollen too.  I have to go see him again in three weeks and then were hoping to have my visits be bi-monthly for a while until I can go back to my 2-3 times a year visits.

It's times like these when I wonder what the hell traditional Western medicine is doing.  I went to see yet another orthopedist my rheumatologist recommended two weeks ago at the onset of the shooting pain.  He said his office would call me in two days.  It's now been two weeks.  If I was the type who enjoys sitting around with my thumb up my ass, then it would be fine to be treated in such a way.  And I know alternative medicine is not always the best choice of care, but I know that if it wasn't for Dwight, I wouldn't have been able to walk today or walk for the last six years without total constriction.

Healing is about loving.  I'm so glad I've found some great healers.
~F

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Insomnia = Pain

For five nights in a row I didn't sleep more than four hours a night.  I started to feel anxious, hopeless, and mentally unhinged.  Add to that my usual pain went from a six to a nine.  My arms swelled, pain shot up my leg from my heel to my hip, and a searing discomfort radiated out of all joints at all times.  Finally after calling a fellow autoimmune illness friend, I decided to go to urgent care.  The doctor told me I was in a acute fibro flare due to insomnia.  She said I needed more sleep (duh) and to increase my dose of sleep medicine.  Thanks to the Gabapentin and Flexeril I'm on, I had avoided self-increasing my sleep meds because all those pills cause respiratory depression, which is no good with asthma.  The doctor said it was okay to take all three for a few days so I can get back into a sleep pattern.

Apparently a lack of vitamin D can cause insomnia & yesterday I was notified by my new rheumatologists office (after I went to urgent care) that I was quite low on D and had a prescription waiting for me at my pharmacy.  So last night I took a higher dose of sleep meds and 50,000 IU of vitamin D.  I slept 11 hours last night and can actually move my arms today.  My RA and RA meds can cause low vitamin D levels but I had no idea I could be that affected.  Interestingly my other rheumatologist didn't catch my low D even though her office tested my blood two weeks ago.  Maybe if she had, this most recent fibro attack could have been avoided.

So chronically ill friends, please have your medical providers check your vitamin D levels.  It may help with pain, lack of sleep, and feelings of despair.  Now you know.

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Ill and Trying to Chill

To be honest I still haven't quite figured out what kind of "voice" I want this blog to have.  I ask myself "should I whine on it?" or "should I be positive?"  I just don't know.  I'm not a new blogger by any stretch but developing not one but two chronic illnesses within the span of five months can make one poorly prepared to deal with it in word form for public reading.  So I apologize in advance if this blog is disjointed, various, and sometimes whiny.  I'll do my best to balance by posting super positive soul affirming stuff too.

This weekend I had the opportunity to go to an RA/RAD meetup.  It was my first since getting diagnosed in September.  Surprisingly there are no actual support groups in Portland for RA or Fibromyalgia or chronic illness (but if I had the energy I'd love to start a group called 'The Chronic').  In fact medical professionals kept telling me early on to go to a support group & when I actually had the energy to search I found most had disbanded (probably because everyone was too sick to go).  Anyway the meetup was such a blessing because I met ladies who were all quite different and had different experiences even, but all were so strong.  It was also nice to just be able to relate in-person with folks who know what it's like to have RA.  I can't recommend enough the power of connecting, especially in a physical group, with others who have gone through what you have.  My wife came with me & she was in awe of the ladies and I think it helped her feel less alone too.  Both of us were so busy and stimulated by the conversations we could hardly eat!

Yesterday I saw a new rheumatologist.  He's a specialist in the early stages of RA and though I felt like I was cheating on my other rheumy when I first made the appointment with the new guy, I was assured by the ladies at the meetup, that seeking out a 2nd or 3rd or 4th opinion is just fine.  I'd like to write a post dedicated to overcoming the "doctor-is-always-right" paradigm but that is for another day.  This new doc so far seems to be a good listener and thorough, so we'll see what happens.  All I know is I am still in so much pain and have tender joints.  Though my 1st rheumy thinks my RA is in remission, this new rheumy does not, and I and my wife agree.  According to this criteria I am definitely not in remission right now.

Which brings me to how my body is today and has been for the last couple days which I can only describe as shitty.  My hands and wrists have been alternately numb or in an aching sort of pain or a stinging sort of pain.  The ache is from the RA, the sting from the fibro.  The weather in Portland has been grey and cool making my body a virtual playground for soreness.  There has been one improvement and that is that my 1st rheumy started me on Gabapentin which has helped my neck pain significantly.  So now I'm on three meds for Fibromyalgia.  That makes the total number of prescriptions I'm currently on for all my diseases add up to the nice prime number of 13.  This does not include vitamins or supplements.  Then we go up to 15.  In addition to the pain, I haven't been able to get more than four hours sleep a night in days even though I am so tired it's funky.  Plus there has been financial stress and some concerns over medical coverage in the possible near future.  I'm on summer break but am quite frankly less than two weeks into it, exhausted.  The kind of tired where sitting in my bed & playing online (no actual betting)  bingo wears me out.

But I remain grateful for many many things including the ability to try out different doctors, try different meds, and meet others who have similar struggles to my own in regard to health.  That's about all the super happy positivity I can muster in the moment so please enjoy this picture of a really cute kitten.

         

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Daily Life with RA and Fibromyalgia

Other than my wife, no one really knows what my daily life is like since my RA and Fibromyalgia diagnoses.  Some days are better while others are worse, which one could guess.  Yet there is not a day since my RA diagnosis in September that has gone by where there hasn't been some level of pain, fatigue, and swelling.  So here's a little glimpse into my world of chronic illness.

Upon waking, every single morning it feels like I have slept on my hands and wrists.  You know that weird stiff, flat, numb yet tight feeling you get from falling asleep on your hand.  Well I have that every morning always.  It takes about an hour for the swelling and pain to mellow out as long as I do my morning stretches.  If I forget, which is rare, then the pain gets worse.  The rest of my body feels stiff for about an hour as well and when I go down the stairs for the first time each morning I pretty much want to cry due to the pain and cracking in my knees and ankles.  After I do my stretches, I drink coffee with the wife and try to get my head together.  Before the diagnoses I was a morning person.  The Fibromyalgia leaves me more foggy now so I need at least a good hour to get my head on first thing.

Sometimes I will have so much  Fibromyalgia pain in my neck and shoulders that it gives me headaches that last for days.  If I awake with one of these headaches I'm basically in bed all day.  The pain is not only in my neck with puffy tight shoulders, but my head pain goes into my sinuses and eyes, and it become too painful to look at anything or even smile.

Provided I have no headaches then my ability to dress myself and get ready for the day depends on the weather.  Cloudy, rainy, or cold weather are all very hard on especially my hands, wrists, knees, ankles, and feet.  Weather changes can be tough too.  It seems like the pain changes with the barometric pressure.  If it's cold and crappy out, then often my wife will have to help me get dressed.  Although now I have regulated my wardrobe to stretchy, flowing items that are much easier to put on by myself.  I avoid buttons like the plague.

If I have class on a day, that is my only activity.  I can only do about one activity for a couple hours per day. If I go to a meeting or meet with a friend or go out to eat I can only do each one per day.  I no longer have the energy to say go to class, go to a meeting and then go to dinner with someone all in the same day.  Typically I nap once or twice a day and need about nine to ten hours of sleep to even be able to get to wherever it is I have to go on a given day.  Just this weekend a friend invited me to go to the museum and I couldn't because there is no way I have the stamina now to spend a couple of hours on foot somewhere.

Also, if I have done some activity the day before, I often need to follow it with a day of rest.

Just about everything I can do from bed I will do.  I'll do homework, read, watch shows, rest, and even eat.  

I try to walk or do some form of exercise every day.  Walking unfortunately can make my ankles blow up like a sex doll so I have to wear an ankle brace, especially if I walk in a hilly area.  Then later at night if for some reason I've been on my feet during the day I have to ice my ankles, especially my left one, to relieve swelling.

Sitting or laying for long periods makes my body stiff.  Since I have to rest a lot, I get stiff a lot.  But if I move around a lot I have more pain, swelling, and exhaustion.  What this means is that during a 24 hour period I spend about 12 of it sleeping and the rest of the time I'm either in pain and exhausted or stiff and exhausted.  Sometimes though I don't feel exhausted.  Instead I just feel tired.  There is a difference.

The pain is actually the most difficult piece to my new life.  Even as I lay here in my bed blogging away my hands hurt, my neck hurts, and my knees ache.  Sometimes at night I get weird tingling pain in my toes.  At any given moment where I hurt in my body may change.  This weekend, for example, on Saturday, my left knee ached.  On Sunday it was my right knee that hurt to the point of limping.  Then Monday I awoke to shoulder, neck, and head pain.  Every day without fail my hands and wrists hurt.  Usually at some point during the week I have to wear one or both of my wrist braces.  I have to be mindful about how much I use my hands because if I over do it, I can't use them for at least a day or two.  Again if the weather is warm and dry then I do a bit better and can actually lift 20lbs (like once or twice that is) and then only have to wear the wrist brace for the rest of the night.

Nighttime is about rest whether I like it or not.  We have only gone out to one movie after 7pm since I got sick because my hips hurt too much to sit in a theater seat.  I have not been out dancing even once  since September, which is hard because I love to dance.  Hopefully soon I can muster the energy on a warm night to at least go to a club and listen to the music.  I miss going to see all my DJ friends.
  
And I must finally add that I have all this pain but am unable to take NSAIDS due to my IBS or acetaminophen because it bothers my asthma.

So that's a snapshot of my world.  There's much more but quite frankly I'm getting too stiff to keep writing, so now I'm going to take a hot shower to loosen up my joints.  
~F 

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Unused Euphemisms for Dealing with Diseases

• Kick Cancer in the balls.
• Gut punch Gout.
• Make Diabetes your bitch.
• Tell childhood Obesity it forgot to call you on your birthday.
• Give Alzheimer's the what for.
• Have Heart Disease get on its knees and call you daddy.
• Show MS photos of your endoscopy results.
• Micromanage Lupus.
• Sniff at Epilepsy and say it smells funky.
• Deny IBS its frequent flier miles.
• Toss RA's salad.
• Hold a magnifying glass in the sunlight to Meningitis.
• Feed Crone's Disease to the crocodiles.
• Half-listen to Salmonella poisoning.
• Tie Depression to a tree and shoot arrows at the apple on top of its head. 

Hello and Oh No

Please note this post will discuss topics of body image and sexuality in the context of my own personal experience.

Ever since I awoke from my post hysterectomy pain haze, something interesting has been happening...and it's been in my pants. For some reason I have been having a spring time renewal down below and it has come as a bit of a surprise. My gynecologist told me that many women find themselves feeling more sexy and sexual after their surgery and I didn't really believe her... until now. My poor wife has to deal with me making eyes at her constantly. Luckily she doesn't mind.

Here's the rub (no pun intended): my body has changed significantly in the last eight months. And for me, it has not been for the better. The Prednisone for treating my rheumatoid arthritis made me gain twenty pounds. For my frame this is a lot of weight. At one time I was on 80 mgs. of it plus on birth control for my endometriosis. So far I have only been able to lose three pounds and the feeling of being out of shape has taken a toll on feeling good about how my body looks, even though I know that I really don't look that bad (the wife of course says I look just as hot). In addition, not being able to pull on a tight pair of jeans - regardless of size, and strut my stuff, has hurt my heart more than I can say. Part of who I am is my sexiness. How I demonstrate it and how I feel it has been lost to me since my RA diagnosis. Button fly jeans make my fingers ache. Zippers have to be pulled up for me by my spouse. The only clothes I can really wear without pain are pull on things like yoga pants, loose dresses and shawls. My "hottest" outfit right now is an empire waist cotton dress that requires not a single button to be buttoned.

Granted I am a product of internalized sexism and have in the past relied on outside attention for confirmation on my looks, but as I got older, that mattered less and being sexy became something for me. I wanted to wear a shirt that showed off my belly button or my cleavage because I loved the way it made me feel. Showing off my dynamic hourglass frame was not just a badge of beauty but a sincere reflection about how much I valued myself as a full being. My body reflected the curves of nature, goddesses, and sex. I felt honored to be bestowed with the body I had. And though twenty pounds didn't diminish those curves too much, I still have not been able to, or even felt like, showing anything to anyone, especially myself.

My hands look different now. Four of my fingers have boutonnière deformity and the general shape of my hands is changed. My hands have always been a symbol of my strength and prowess. I loved the fact that I could use my hands to paint a picture, write a meaningful letter, learn guitar, and stroke a thigh. Today I can no longer hand write, open tight jars or type for very long (which is why I post infrequently). And quite frankly if one desires to be sexual, having hands that can function without cramping and hurting is a very good thing. So behind the pain and deformity is insecurity about a certain skill set that is kinda necessary in life, especially if you're in a long term relationship. And again, this lends to not feeling sexy at all.

Yesterday for a little while I was feeling my old sexy self wishing to emerge. I wanted to take a shower and as I undressed I looked at my now scarred post-operative belly. I did not like what I saw. Instead of feeling grateful for the (hopeful) elimination of an illness, I just saw scars. For a moment I wished I hadn't had the surgery at all due to my new marks. Unfortunately the band-aids that were put over my incisions caused a reaction on my skin and for every incision, there were two blood blisters. That makes fifteen marks on my stomach that will fade but never really disappear. To me the marks are bad as I love to show off a little tummy in the summer. Since the scars are above my belly area it shouldn't be a big deal right. Well try watching a movie with a hot sex scene and think if you've ever seen an actor with post-hysterectomy scars. Looking at my stomach, I thought about how unsexy those scars are and how my confidence in my body, especially naked, was at a low. When one takes off their shirt for their lover they want to stand tall within themselves. And with this body, I feared I could no longer do that.

One of the really nice things about being married is that real love goes beyond the artificial or the ego. Even if your mate isn't hot for one reason or another, it doesn't break up the relationship. You are loved no matter what, and desired even if the body changes. But for me it is still important that my spouse wants me carnally and not just in mind and heart. She is my best friend, my partner, and my wife. But she is my lover too and I want to keep that part of our connection simmering.

So at this point I'm grieving. My hands are changed forever and are likely to only get more deformed as the years progress. I may lose the weight, but it may take months if not years, as my fibromyalgia keeps me from being athletic. My belly scars may fade, but some will always be darker that others. And besides all that, I'm getting closer to forty. Aging often means even more body changes. Sometimes it's all just too much. Being in constant pain, while feeling like I'm losing fundamental parts of myself (literally).

Lord knows I was born a fighter. Which means a gal like me can never be kept down for too long. If I have to live with this weight than I'll friggin' rock it. If I have to make do with these scars, then maybe I'll get some new butterfly tattoos for them. If my fingers won't work, than I find other ways to do what I once did. One nice thing about going through this in these times is the advent of some pretty awesome technology. So I may be lamenting for now... but watch out when I get my strut back. I'll do it even if I have to wear pajama jeans!

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