Category: rheumatoid arthritis

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?

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

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.  ❤

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. 🙂

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.