Tag: autoimmune

It’s a slippery slope… How I turned to the Autoimmune Protocol

If you’ve ever stopped in to this blog before, you know that I frequently talk about what is ailing me or what new diet I [a] want to try or [b] am currently on.  When I look back or even think about its totality, I get it; it’s a rather self-absorbed rambling rant, but it’s not really for you, it’s for me…. to keep track of progress, major setbacks or victories, what’s working and what’s not working.  It’s only for you if you: share a problem, you stumble upon this blog, and we can help one another in any way.  That is why I share in a public forum.  I have gained so much knowledge and support through the Internet, I cannot imagine tackling a chronic illness without it.  I truly came into my own in my forties and I continue to grow wiser/calmer/happier in my fifties.  I was thrown a bit of hardball with the RA diagnosis, but what the heck, it made me forget about menopause. Menopause, smenopause, if I can thrive with Rheumatoid Arthritis, menopause is not even on the radar.

So, a couple of years ago, I lost almost 50 pounds and I was on top of the world.  Then someone stole my wings https://kimmstree.com/2014/06/07/maleficent/ and over the next couple of years, I slowly and painfully gained over half of it back.  It feels like more since I also lost some lean muscle as I could not walk/zumba/hike/run like I used to.  I cannot blame this all on the RA, making unhealthy food choices is a slippery slope that once you begin to slide down seems like a super slide with no stopping mechanism.  Sugar and simple carbs are poison to me; I know this.  When I eat them, I am medicating with food.  I have done this my entire life.  My Mother and Grandfather taught me.  Food was comfort, food was reward, food was a drug, and food was an ever present focus.

You cannot read about health issues or autoimmunity [I already have at least 2 autoimmune diseases], without learning that our gut is the new center of our health.  Hippocrates, was evidently, right all along when he said “all disease begins in the gut.”  Our microbiome is as messed up as our planet.  I discovered a couple of years ago that gluten and I didn’t get along and I cut it out. It was no picnic in the beginning, but I am used to it now.  I have become quite creative with alternative flours and grains, but I know that I am still allergic to something because of persistent rash on my thigh that reacts to my food intake by inflaming and healing in turns.  I suspect I may be sensitive to other grains, lignans, dairy, or eggs.

October is an auspicious month for me.  It’s my birth month and I have had two successful beginnings on October 6th. October 6, 1999, I stopped smoking and never looked back.  October 6, 2013, I began using Take Shape for Life/Medifast and lost almost 50 pounds in 5 short months. So, on Monday October 5th, I began the Autoimmune Protocol.  It basically removes anything that might be allergenic or that tends to promote leaky gut for at least 30 days- it is easier to say what I can eat than what I cannot.  I can eat fresh unprocessed meats, broths, vegetables that are non legume, and fruits that are non citrus.  I cannot have coffee, sugar of any kind, nuts, seeds, or grains, eggs, or dairy.  I am allowing myself only one grain and that is a bit of brown rice, and only if the brown rice is soaked, slow cooked in coconut oil, and then refrigerated for 8-12 hours.

I’m on day 5 and I feel more energized already.  Seriously, once the sugar is gone for a few days, it no longer has power over me and I feel back in control.  I’ll be writing this month to record how this elimination protocol is going and how I reintroduce foods.  If you have tried it yourself, I’d love to hear from you or get a link to your blog.

Humira Update

I think I might be able to see remission at the end of this tunnel.  I still have some thumb pain and some ghost pains in my wrist, but my feet are easing up, as is my hip.  I’m at 20 mg of MTX weekly, 40 mg. Humira every 10 days, 400 mg. Plaquenil daily, and still hanging in with 5 mg. Prednisone a day.  The proof in the pudding will be when I can completely come off of the Prednisone.  I might have to go weekly on Humira to do that, though.

Humira is a weird drug.  I do sometimes have what I call the Humira hangover where I feel wiped out the day of or after an injection.  Sometimes it’ll be delayed a few days.  I also have strange ear fullness akin to pain and sore throat and some increased allergy like nasal symptoms.  I guess that is a small price to pay to be able to hold a cup again, get dressed, walk.

I was virtually pain free the week before school started again, but I guess stress really does exacerbate symptoms, so starting back to school has been a bit of a set back.  I am just trying to get enough sleep each night.  The extra exercise on school days is good though.  I walk 7500 steps just during a reg school day and it doesn’t take much extra to get 10,000.

I’d like to hear from you if you take Humira, and especially if you take it for RA.  Leave a comment about your experience.  Has it worked?  How long have you been on it?  Side effects?

PS:  I am starting year 19 of teaching Special Education and year 2 of teaching elementary Autism.  I love my class this year and I’m looking forward to a great year.

What I wish people knew about RA:

I found this article today on rheumatoidarthritis.net and overwhelmingly, these things ring so true.  I decided to make my own list.  Hopefully, if you love someone who has RA, you will take the time to read this list.

Community Thoughts: What Do You Wish More People Knew About RA?

My list:

1.  My sister was dx with RA 10 years or so before me.  I thought I understood.  I had NO IDEA.

2.  I don’t know what it is like any longer not to hurt somewhere.

3.  I get really tired of compensating and asking for help at times like when my hands just won’t work.

4.  I’m pretty much tired all the time.

5.  There’s a world of pain and fatigue behind this smile.

6.  I have always taken pride in being strong and independent; this disease tries every day to take that from me.

7.  I feel like I am battling a monster every single day.

8.  I get it- you don’t understand, and even when you try, you still don’t really understand.

9.  It never goes away.  I don’t get to look forward to a cure.  All I can hope for is chemical remission where the drugs that put me there could also take me out in any number of other ways.

10.  I feel like I have aged 5-10 years in the 15 months since my diagnosis.  This frightens me.  Sometimes I just cry.

So, wow.  This list makes me sound really self-centered- it’s all “I, I, I, and I.”  That’s another thing this disease does.  It makes you feel self-absorbed and whiny.  That is so far from who I think I am.

The most important thing for you to know, though, is this:

I have RA, but it does not have me.  I will not stop fighting.  

Gifts RA has given me:

1.  I live in the moment a little more.

2.  I have more compassion for people who live with chronic pain… for people in general.

3.  I think I am kinder and gentler on the daily.

4.  I have let go of all the anger I used to hold on to, which could have contributed to the firing up this disease/state of inflammation.

5.  I practice mindfulness and forgiveness more often.

So, as always, with loss, there are gains.  I imagine I will find more gifts as I go along.  ~Peace.

How long do I have to wait for some biologics?

I’m having a bad day.  Hell, I’m having a bad week..month.. year.  I alternate between being a super stoic and what feels like a big baby.  On bad days, I can be short-tempered, ignore you, or be downright mean.  I feel sorry for myself way more often than I want to.  Tonight is injection night and I don’t want to stick that needle full of antifreeze into my thigh because today I don’t have much evidence that it is working.  What it does do is make me crazy, exhausted, and sick.  I guess it’s working, because I am making it through each day.  I’m still working two jobs.  I am keeping my head above water.  My feet don’t feel broken when I step onto them each morning, but this disease is so capricious in its expression that I feel like I wake up every morning on some demented game show– What the Fuck Hurts Today?  This month, the background music has been the pain in my neck that makes me walk funny and behave like a manikin.  A few of the contestants have been the nails in the tops of my feet, my aching and useless left thumb, and my left knee.  Even my jaws hurt.  The day I saw the doctor last, must have been a good day, because I gave myself 2’s and 3’s.  I am not sure I have had that good of day since.  I find myself wanting to tell this doctor how great it’s going.  I don’t want to tell her that I feel like I am failing on Methotrexate.  I did ask, “how long until I feel good again, like, I don’t hurt?”  She said, “now come on, you’re fifty, it’s not ever going to be perfect.”  I don’t want perfect, but I do want my life back.

I don’t want my blog to be a big whine fest [especially since I am not supposed to even have wine with Mtx].  I don’t want to have to ask for an antidepressant.  She already gave me Tramadol for pain, so clearly she is pointing me in that direction.  I have always been the no-nonsense girl who finds depression so self-indulgent.  If you have time to be depressed, I’ve always thought, you don’t have enough to keep you busy.  But now, I find my boyfriend telling me I need to watch out for depression, like it might be sneaking up behind me.

And other than my sister’s good fortune today, he was the bright spot in my day–my Bean.   Tonight, he went to the drugstore and then to Wal-mart and bought me all kinds of goodies.peas ice bag tens

Icy Hot patches, disposable tens units, peas ice bag, ice bags to fill [large and small], and so much relief in a couple of bags.  So, now, I sit in the corner typing as my neck crackles, ripples, and pops in mini spasms from this tens unit, appreciating someone who took the time to take care of me today.  It makes me seriously tear up in gratitude.  ❤

Progress

Five weeks into the Methotrexate and it’s time for an update.  My rheumy doc told me that there was a strong possibility that by the time I came back to see her in 5 or 6 weeks, that I might feel no improvement, that it could take a bit longer than that since this dmard is very slow acting.  She said progress might be imperceptible and I might need other people to verify it, for instance, someone in my family saying “yeah, you are not limping as much” or “you don’t seem to be talking about your feet as much.”  So, I was not expecting miracles and was ready for no progress at the return appointment which will be in about a week and a half. Color me surprised, then, when I could feel noticeable progress at five weeks!  I’ll bullet it for brevity’s sake.

  • When I wake up in the morning, I am not walking on broken feet and limping.  In fact, some mornings, I don’t even think about my feet.
  • I don’t wince every time I pull up my pants.
  • I can button my clothing easier.
  • I can walk distances again.
  • I want to walk.
  • I am not as stiff when I rise from any period of sitting.
  • I am taking much less Ibuprofen.

Now, I still have my needs.  My neck is killing me right now.  My knees still hurt when I go up and down stairs.  My thumb joint still aches and throbs at times.  But, in all, I am really happy with my progress.

The side effects of Mtx have not been unbearable.  I have some occasional stomach upset [mild] and some mood distress [mild to mod] that is quite interesting in the way it manifests.  Most people are slain the day after their dosage [which is when gastrointestinal stuff happens if it is going to], but I have like a 3 or 4 day delay.  For instance, I would take the Mtx on Sat evening and then it would hit me by Wed of the next week.  What happens is exhaustion that is akin to swimming in Karo syrup- feeling like lifting a hand is work but I don’t have the liberty to rest since I work two jobs, so I keep going and then everything ends up making me cry.  Well, I don’t actually cry in front of anyone but Bean and I am sure he wishes I would stop it, but there you have it.  Weird, but doable.  

What has helped in addition to the Mtx is taking my supplements correctly and remembering to take my prescription Folic Acid.  Thank you, Bean, for buying me a large pill manager compartment thingy so that I can remember to take them all each day at the right times. I take Armour Thyroid, Folic Acid, B vitamins, fish oil gummies, Krill oil capsule, Curcumin, Anti-inflammatory bio caps, 100 vitamin C, & vitamin D in addition to my 1x week Mtx.

I think I will tell the doc to ramp it up a notch when I go back because I need to get in shape for summer hiking.  I’ll go from 10 to 15 or something.  I have googled this whole mood thing with the Mtx. but I would like to hear if anyone else has experienced mood alteration or that kind of strange exhaustion on this drug.

Oil Pulling– Yep, I tried it!

So, if you’ve not been hiding under a rock lately [translation you have been lurking about on Facebook or Twitter or Pinterest], you’ve most likely heard about oil pulling.  If you’re a quasi-hippy, like me, then you were intrigued by this sorcery and wanted to know more.  Anything that mentions coconut oil, frankly, has me at hello, so I proceeded to do some research using what else, but Google, the company that now owns all our thoughts.  I found these instructions:

So, it’s basically three steps:  1. choose 2. swish 3. spit

Choose an oil that is organic, coconut is nice because it melts slowly in your mouth and has a pleasant smell and taste, but you can also use sunflower or sesame.  Take about one tablespoon [I used more like a teaspoon and a half] into your mouth and then just let it sit there or swoosh it around for about 20 minutes [that feels a bit excessive, more on that later].  Then, after it has had a chance to pull all of the toxins out of your mouth [they are like little hidden terrorists], you just spit.  Yes, spit that stuff out- it’s full of terrorists.  Don’t spit into the sink because it will clog your pipes up– of course, if you swallow, it might open your pipes up [giggle].

Like other folk remedies that have stood the test of time [this is ancient Ayurvedic], oil pulling is supposed to ameliorate a wide range of ailments.  I will only list a few that stood out for me: clearing up the skin, Gingivitis, whitening the teeth, reduction of systemic inflammation so it could help with RA, relief from sinus congestion, better quality sleep, improving the immune system, balancing the bacteria in the mouth, and on and on.

Huffington Post even weighed in with an article, and of course, Snopes debunked the majority of the benefits [but they cannot debunk the ones associated with the mouth and dental health benefits]!  It doesn’t matter when you do it, but some sites claim that on an empty stomach first thing in the morning is best, so you can do it while in the shower.  Afterward, you do your normal tooth brushing, flossing, pik routine and, voila[!], your teeth feel super smooth and they are whiter to boot!

So, I have done this like 3 times and here is my personal review.  I used coconut oil and I don’t mind the solid to liquid thing like some, but I felt that a little over a tsp. was a plenty and 20 minutes seemed like an eternity.  I could only make it like maybe 5 minutes before spitting.  Some people have said it was sort of comforting and nice to hold the oil in your mouth while lying in bed or doing your morning business.  I did not find that to be the case.  It was, well, a neutral experience for the most part.  I did not find it particularly pleasant or noxious, although I did have some problems holding it in my mouth.  It was either dripping out the side onto the screen of my cell phone while I playing Candy Crush in the bathroom whiling away my 5 minutes, or I was tempted to swallow it because it tasted kind of good and it felt like it was growing in volume, the way your spit seems to flood in when you’re at the dentist and you cannot yet spit.  After brushing and flossing, I did notice that my teeth were whiter, and not just from the regular brushing.  They are noticeably whiter and they stay that way all day.  It’s like they are coated with that oil for a while, so your coffee wants to stain your teeth, but it can’t get a grip on the enamel because it’s all slick from oil.  Fabulous!

I am not sure about the congestion thing, but this morning after oil pulling, I did cough a lot and now I do feel like my lungs and nasal congestion is clearer.  That could totally be a placebo effect, but I’ll take it.  If you have pulled oil and would like to weigh in, leave a comment about what you thought of it or what it did for you.  I keep the coconut oil around for my skin and cooking anyhow, so why not?  I love the whiter teeth and the way my mouth feels after.

Clumsy Hands and Broken Feet- A Diagnosis

This week I had the wind knocked out of my sails.  I was diagnosed with RA.  Rheumatoid Arthritis is an autoimmune version of arthritis where your body attacks the synovial lining/cavity of your joints and sometimes other organ systems like your eyes, lungs, vascular system, and heart.  It manifests as pain that usually begins in your hands and your feet-exactly where mine started abruptly this past fall.  I may have had RA for a while, but something triggered it prior to November.  I suspect a teeth cleaning that left me with swollen sore gums for weeks.

I already have one autoimmune disease- Hashimoto’s Disease [autoimmune hypothyroidism]- I wonder if there is a limit, like how many AI diseases can you get at one time?  I hope there’s a limit.  I found out I had Hashimoto’s when I was in my late 20’s.  I’m in good company, ie… there is a genetic predisposition, since both my sisters and my Mom have it and my late maternal grandmother did as well.  I am cool with this; I have it on lock.  I know this disease inside out, I self-titrate my natural thyroid [Armour], and I ignore well-meaning practitioners who tell me that my TSH is too low while disregarding other key blood markers and my physical well-being and self-awareness.  I am not afraid of Hashimoto’s.

My Grandfather suffered from Dermatomyositis [another AI disorder].  My sister has RA.  Yeah, that should have been a clue when my joints caught fire.  But, it wasn’t.  That was her disease; and one that I never planned on claiming.  I did not have RA- I like to hike, I’m active, and I always have at least 2 jobs.   I climbed a mountain in only average shape [for a 49-year-old] in April.  I run on my treadmill even when my knees and feet hurt. I don’t like to take drugs of any kind and I do like to eat clean [although I struggle with a love affair with sugar that I am seriously trying to end]. I had just lost more than 40 pounds and I was feeling great.  I was excited to turn 50!  RA was an image in my mind that did not fit with the image I have of myself.  So, when Dr. Belhorn said she was positive that I have it, she might as well have punched me right in the gut.  When I got into my car after that appointment, I did not have the key turned in the ignition before I was sobbing.  My denial had been so complete that I had an explanation for each puzzle piece.  My knees were stressed from the Zumba, my joints hurt because I was allergic to wheat and all of this was related to my skin rashes and eczema.  I even thought I might have lupus or psoriatic arthritis, maybe reactive arthritis, but I was pretty sure it wasn’t RA.

When you google RA images, you see this awful picture of a hand that might belong to the cannibalistic witch who locked Hansel up in a cage.  I can imagine that gnarled hand reaching in to retrieve the bones he would hand her when she tried to determine his fitness/fatness for cooking.  I know that it is not a death sentence, not directly, but it feels like a sentence of some sort– a sentence of having to put toxins into my body to prevent deformity and disability; a sentence of having to take handfuls of pills that make sick, a sentence of being tied to doctors [who belong to a profession I collectively mistrust].   So, I am researching and finding that there are a lot of weedy paths that you can get lost on and lots of scammers looking for an easy mark.  It’s hard to know whether to trust the doctors and researchers because to hammer-wielding people, everything looks like a nail.  I am not even sure if that analogy makes sense here, but I keep seeing clinicians holding hammers as I do this research.  I know that a plant-based diet, low in sugar and red meat that limits grains and sugar is optimal.  I know that fish oil, especially Krill oil helps.  I know that I need to stop being so angry because inflammation is a factor of seething anger, but I don’t know exactly how to let go of the anger that I have.  It’s a simmering, chronic anger that bubbles up when I sense injustice- real or imagined.  It’s an anger that is as self-indulgent as I believe depression or boredom to be.  It’s well hidden and most people who not have any clue that it’s there.  Perhaps some more therapy is in order, but I digress.

In October I had my teeth cleaned.  It wasn’t remarkable in any way and I have them cleaned like clockwork every 6 months.  I do remember that the hygienist was a bit aggressive, there was bleeding, and my gums proceeded to hurt for weeks afterward.  I was seriously worried I might have gingivitis and I was googling away.  I followed this with gargling– salt water and sometimes hydrogen peroxide, and I switched to a gluten-free tea tree oil toothpaste.   The gum pain eventually subsided, but then the joint pains began.  I did not immediately connect the two.

November.  The first pain was in my knees.  They were a bit swollen and so tender they hurt to be touched from the outside.  I thought it was the Zumba.  It can be hard on knees.  Then my elbow was so sensitive that sometimes when I leaned on a table with it I would react in extreme pain like being hit in the elbow or shocked.  When I turned in the bed it hurt.  My hands would go numb along with my finger tips.  One day I felt like I was walking on a stone.  I said that to everyone who would listen.  “I feel like I am walking on a big rock.”  Then, my big toe swelled and I could not bend it.  I thought I had gout.  Then my fingers began to hurt.  My ring finger joint swelled so big I couldn’t wear a ring.  It ached.  My thumb and knuckle were swollen and hurting.  I found some days I could not button a shirt.  Every day, pulling up my pants after using the bathroom hurt because it required that I hook my thumb and pull upward. And the foot pain… as soon as my feet hit the floor in the morning, I am reminded that my feet are broken.  It feels like walking on bloody stumps, or on feet that someone has smashed and broken the small bones in the center, under the balls.  This pain makes me walk funny and does not subside until I manage to walk it off so to speak about halfway through the morning or by lunchtime.  By evening, it is returning once I find myself sitting and then stand again.  The stiffness is from my hips down through my knees and into my feet right through to the arches.  The foot pain is the absolute worst.

I would still not have gone to the doctor about this– again the denial– if it were not for an acute shoulder incident in February that I related to a fall in the snow [but was really most likely a shoulder flare].  When I told the GP of my other joint pains, she diagnosed a rotator cuff injury, but did some blood work.   The rheumatoid workup results led me to a referral to a rheumatologist.  Before that appointment, I researched everything but RA.  Even sitting across from Dr. Belhorn, my denial persisted and she called me on it as I cross-examined her about the discoid rash on my thigh, the possibility of lupus, Dermatitis Herpetformis, and reactive arthritis.  She said that she would highly suspect RA in someone with my symptoms and an elevated RA factor.  My factor is not subtle, though, it is almost 200 and that is indicative of only a handful of illnesses in the absence of a positive ANA.  The family history cinches it.  So, she took more blood and x-rays and pending the outcome of those results, she will advise on how aggressively to proceed.  At this point, I am hoping for Plaquenil only, but I suspect she will also recommend Methotrexate.  I am pouring over RA blogs to get a sense of what works for different folks and what kind of side effects are widely experienced.

In retrospect, I see things now that could have been clues.  I felt last year like I was losing upper body strength when I could not win an arm wrestling match.  It literally startled me as I have always been pretty strong physically. My inability to work the latch on my grandson’s car seat could have been a clue- I became more and more frustrated by this and had to ask my other grandson to do it for me [I blamed the car seat].  I had trouble with lids, I dropped things more.  One morning this fall, I dropped my coffee cup for no apparent reason.  It just fell from my hand shattering and spilling while my students rushed to help me.  I have broken a bowl and two cups, at minimum, in the last 2 months.  I fall a lot.  There are so many and they keep coming back to me.  The day I was diagnosed, I felt defeated.  My pain felt worse and I felt sorry for myself.  That was only two days ago– it feels like a week–but I am bouncing back already.  I found a cool blog:

http://www.rheumatoidarthritisguy.com/

On it, there is a page of a mosaic of all sorts of people who have RA.  They are overwhelmingly female, but they are quite diverse and they don’t look like cannibalistic witches.  They look like normal people of all ages who are doing interesting things.   That was a turning point.  I said, “okay, I can do this.”  Thanks, RA guy [& all the people who submitted their pics and profiles].  I needed that.