Category: autoimmune

Update July 9, 2018

This title sounds like a star date and that is about right.  It feels like light years since I wrote anything for this blog and it appears it has actually been two years since I made an entry.  Two incredibly busy years kept me from blogging… let’s see, I have been teaching 3-5 AU [which requires the energy of 3 or 4 people] and continuing to work part-time at the group home, dreaming of retirement and/or a time when I can read books again and maybe write books finally, living this crazy romantic life with Bean where I bridge two cities and live out of little bags that I schlep back and forth in my car, and dealing with a crazy woman who is the biological parent of Audrey and Rusty and this is an entire story unto itself, so yes, I’ve been a bit busy.

The crazy selfish bio parent has a weird and abusive older boyfriend who attacked Rusty multiple times, we didn’t know until the last when he made the North to Alaska call to his Dad in the moment.  Skip forward to weird Trumper-boyfriend signing a DVPO voluntarily to avoid having said children testify in court, Mom saying I’ll miss you guys and moving a city away to a smaller apartment and now only seeing one of the kids for a couple hours each week.  This all happened almost a year ago and the fallout has required me to step up and our relationship to change since the kids went from being around 14 of every 28 days to 28 of every 28 days and 24 hours of every day.  We are not complaining as they are better off in so many ways, but the disappointment that we all feel for this horrible woman and her terrible choices weighs like a heavy rock we all have our hands up in the air to collectively carry.  We are trying to find a big cliff to pitch it off and purge ourselves of the dark cloud of letdown and disbelief.

RA turned out was the moderate to severe and aggressive sort that only responded to a multimodal full on assault of Methotrexate, weekly instead of bi-weekly Humira injections, Plaquenil, and sometimes steroid bumps/tapers.  I have erosions in my hands and feet after only 4 years and my feet look different with weird nodules and bunions and daylight sign on middle toes.  I don’t think about RA as much, though, and it is now just part of the landscape of my life, in fact, I would have said I was in a good chemical remission, until late spring/early summer when the Vasculitis hit.  I developed petechiae on my feet, and since my sister just spent the better part of a year slaying this particular dragon, I knew what this might be.  A routine visit to my eye doc where they found hemorrhages on my retina and I knew for sure.  Now, we have to figure out how to proceed while I do daily steroid doses that are making me a bit moon-faced already.

I did get invited to go to Boston, though, to a Co-Creation Conference [which I don’t really know a lot about so far but will be going next week, so I will fill in the blanks then] to speak to medical professionals about my RA journey.  I am so glad that I had this blog, because I can literally go back and read about what it felt like when I was diagnosed and remember some of the things I have forgotten about what it was like when I was dying a bit every day from the pain and exhaustion.

And so, halfway through a wonderful summer break when I have time to actually write a paragraph, I have an all expenses paid solo trip to Boston to look forward to and a chance to share my story, and who doesn’t love a story more than me?

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.

When the Bread of Life contains Gluten

I’ve been staying away from church for a number of reasons.  I walked away from my church of 25 years over a year ago because of a priest and some church members who thought that buildings were more important than people, but that is another story and lots of water long gone under a bridge.  I started attending my son’s church because I loved his minister and because I enjoy my son’s part in the praise band, but after that favorite minister left, I began spending more weekends in another town staying at Bean’s and sometimes attending his church, but overall, mostly hopping back and forth between those two churches. Then RA struck, and I became angry and depressed and yes, maybe God was sometimes a target.   Fast forward to 6 months ago, when I realize that gluten is poison to my body and that quitting it heals my eczema, alleviates some of the pain in my joints, and may help mend the leaky gut that might have led me down the autoimmune path in the first place, and my newest reason to stay away from church is…  I’m allergic to God.

I mean, really, come on… first there was the God the Father thing that is so hard for children who have abandonment issues or who have been abused by their father figure, and now, well, this sort of feels like abandonment, too.  I went back to St. Mark’s this summer and picked a perfect day for it as Bishop Curry was in the house and rockin’ it with one of his energetic and engaging sermons, but when it came time to come to the table so to speak, I was excluded.  The liturgy invites us to come, to eat, it shares the words of Christ, “take eat, this is my body which is given for you… do this in remembrance of me.” I used to be a lay minister.  When the priest hands you the host, he or she says “this is the body of Christ, the bread of heaven.” So, sitting there, I felt and I feel separate now from God.   I am gluten intolerant.  I am God intolerant.  His body is poison to my body.  That is heavy stuff right there.

At Bean’s church they have gluten free crackers for people like me.  We have to ask for them, though, and I don’t like that.  I don’t want to be singled out.  I don’t like being that girl, a problem, a food nut, high maintenance….  I don’t want to bring attention to myself that way.  When I told my old friend at St. Mark’s the reason I didn’t come to the altar that day, he said okay, like he was confused about why I might have told him this.  I was telling him this, because I wanted to come back.  I want to be welcome at that table again.  I want to be able to come to the table and not have to cross my arms to receive a blessing only.  I don’t want to be allergic to God.  At our church, we use these pressed wafers.  Why not have them all gluten free.  You can barely tell they are bread anyhow.  I wonder if the body of God had gluten when Jesus broke bread with his disciples at The Last Supper?   I can eat many ancient grains- teff, amaranth, millet.

It’s estimated that 1% of the population has celiac disease.  That’s not a huge percentage, but that is a good number of people who find themselves unwelcome at God’s table.  It’s food for thought.  Churches might consider this when deciding if they are inclusive and welcoming.  It’s just one more thing, and it might not seem like a big deal, but it feels big to me.

We might as well just admit this is an RA blog

I read the news today, Oh, boy… That song is in my head this morning after news this week of Robin Williams’ surreal death, evidently taking his own life by asphyxia.  That would be hanging, I guess.  Hearing this made me incredibly sad; that this ball of energy and life surrounded by a world of people who love him could not reach out to just one person.  How dark must be this place where there is no hope, where someone can see no future that is worth walking toward. I pray his children can find comfort and peace.

I am on a Facebook fast, day 12, and so I heard the news via text from J, who likes to share news with me or pitied that I was not able to learn this news through FB, the largest news conduit on the planet.

I haven’t missed it really.  I miss the escapism it offers in moments like waiting rooms, bathrooms, and just waking up in bed when I don’t really want to get out of my soft, warm, wonderful bed, but I still want to connect in some passive way to the world outside my window.

My internet is not working again.  This conspiracy gets me to write this morning [Tue].  My ADHD will be clearly apparent with the next topic I bounce off to:  my RA.  I started a trial of controversial antibiotic masquerading as a DMARD, Minocycline, about 5 days ago, maybe a week, and I felt very depressed initially.  Perhaps, I still do, I still am, and I am just getting so used to it,  so now it seems normal.  I feel flat like those gimmicky dolls of my childhood- Flatsy.  I feel unaffected, not happy, not particularly sad or angry or worried or anything else…. just flat, like a soda that has lost its bubble and sparkle.

I can hear your thoughts as you say, omg, an antibiotic cannot make you feel like that, but I disagree.  I am, if nothing else, fairly highly self-aware, you might say self-absorbed, but I like to think of myself as self-aware.  I know my body and my feelings and my reactions, and so when I began to feel the life seeping out of me, the energy bleeding out like the helium slowly escaping a balloon, I did what any self-respecting busybody researcher would do, I googled it.

And, indeed, Minocycline is one of the few antibiotics that crosses the brain barrier, so I am deactivating macrophages and killing mycoplasmas and God know what else from my brain at this very moment.  Apparently, those very macrophages or mycoplasmas are key players in the animation of my existence; and as they die off, I become increasingly morose.

Yesterday, while in the office, my suite mate who is sort of cross between my youngest son and a number of Judd Apatow characters kept asking me questions, and it was like I was on a delay.  I couldn’t answer very quickly and when I did, my voice was planking like the tall policeman brother’s voice on Everybody Loves Raymond.  He said, “do you have your earbuds in, or something?”  I said, “no, I’m just trying to figure something out, here.”  Which was, in fact, the truth, I saved the wrong file to the wrong file location and had to switch them back before my newly decompensating brain forgot and left them that way.

I am eating too many carbs, because my stomach is becoming more poofy and obtrusive. Betty, I call her when she makes herself known by pooching out overtop of my shorts and underwear and making my middle less like an oreo and more like a fatly stuffed whoopee pie.  I don’t like her and I don’t know why I cannot stop eating carbs.  It’s just food-fuel-stuff to keep me going.  I am medicating with food, ding.ding.ding. <light.comes.on> and so the dilemma is this:  Do I stop taking this drug that might help my RA so I don’t need to medicate with carbs? 

Hold it, on day 5, let’s see where I am there:  energy level—vacillating at an unsatisfactory level, stiff toes, fingers, neck, intermittently sore all over…so, clearly, the jury is still out. 

Do I add yet another drug, perhaps, an antidepressant finally… I am thinking I would ask for Wellbutrin since it has a stimulant effect and might keep me from eating so many carbs. Bean says that you can’t get an anti-depressant when you have been depressed only 5 days, but I feel like I am an exception [shocker].  Since, I was depressed for like 20 years and I didn’t get any antidepressants at all, so I am long overdue for some.

And, is this just menopause?  Old age ain’t for sissies—seriously.  It’s hard to keep the conditions straight and figure out if the exhaustion is due to one or the other or any of the myriad medications I now have to take, or environmental… like because we live in this never-ending recession and our bills keep taking bigger bites of our pay… hmmm..

I have to stop ranting.  It’s so unattractive. 

On to the upsides [if I can find some].  I am on a Facebook fast.  I don’t really miss it.  I still have hair.  I can walk.  I still have a sense of humor.  I have the best boyfriend /fiance ever.  I have two jobs.  I have super grandkids– my kids are pretty cool, too, but they have issues, and so the grandkids win.  I have a roof over my head, which is critical since we now live in a rain forest environment.  I have a very sparkly engagement ring that reminds me every time I look at it that somebody really special thinks I am special and wants to spend his life with me.  I have faith and hope and love, and really, that is all I need. 

engaged

Methotrexate

I had my med management appt at the rheumy the other day and I had done my research.  I was ready for an aggressive approach advocated by research for people recently diagnosed, only Dr. B was having none of that.  She wanted to do the monomodal approach using the old standby Methotrexate.  I asked which was more effective, MTX or one of the new biologics?  She answered, “well, of course the biologics are, but they are only for people with moderate to severe disease states and for whom MTX did not work or stopped working.”  I said, “you mean, the insurance won’t let you?” She answered, “yes, they have to try the cheap and tried and true drugs first.”  So, there you have it.  Blue Cross/Blue Shield has predetermined my treatment because MTX is cheap and has a generic form and the biologics are new and cutting edge and don’t have generic forms and so I have to wait until I am pretty bad off to get one of them.  I am trying to stay super positive though, and so I am going with gratitude that I am not bad off enough to rate a biologic yet and may never be if MTX puts me into remission and keeps me there.

Dr. B told me that MTX does not have a lot of side effects, the Internet told a different story, so holding my 4 pills plus a folic acid pill in my hand last night I did have pause thinking of the most noxious of side effects like nausea, dizziness, hair loss, stomach pain, extreme fatigue, and so on, that I could experience.  I was alone and I wondered what would happen if I had some awful reaction or got really sick.  But, I was tired, and so I swallowed them and went to bed.

Well, guess what?  I slept like a nice rock.  I remembered to take my nighttime 800 Motrin, so I awoke with less foot pain and even my hands were not too stiff.  I had diarrhea almost immediately after waking, but that was it.  The rest of the day was, frankly– the best day of this past week.  I felt pretty good all day long. So, I feel pretty victorious, like I kicked butt or something.  I am not sure what this means:  I got a bad batch, I’m a badass, I am not affected by this drug like other people are, it’s going to work great, it’s not going to work great, who knows… but I am thankful that I did not have bad side effects today.  I only take it once a week, so I won’t take another dose until next weekend, and Dr. B says I won’t really notice improvements until after like 6 weeks, so it’s a slow drug.  I hope the side effects don’t take that long to show up.

I’m off to bed now.  Everything I read says I need my rest.  I’m feeling positive and hopeful tonight. 🙂