Category Archives: rheumatoid arthritis

On NOT being able to see the doctor…

So… Wednesday is infusion day again. I’m SO looking forward to being on the receiving end again. I can always tell when I’m getting close. My hands ache… my feet ache… I’m physically exhausted. There are months when right before infusion it is all I can do to stay awake at work. And if we happen to have to drive on the less than stellar roads… there are times I toy with how much it would add time to the drive if I opted to get out and walk. Bear thinks I’m finding fault with his driving. I’m not. I know that it is my body being all pissed at me.

Some people figure that, since I’m down 50 pounds, I shouldn’t feel as shitty when it is infusion time.

Wrong

I don’t hurt as bad when I do races (depending on where it is in my infusion ‘that time of the month’… ironic that I look forward to that time of the month since I had my hysterectomy… when I race). My hips don’t scream. My knees either. I’ve actually been toying with trying to run in my hobbit feet again since I am less heavy. But when the Orencia is wearing off… I still feel it.

And, yes, I know I’m way more crabby… bitchy… short tempered… when I’m nearing infusion day. I’m way less apt to shrug off the BS. I have gotten better about not saying what’s running through my brain… but it is way way more apt to be running through my brain now.

But what has really started to get to me… Cleveland Clinic has decided that I no longer ‘have to’ (read get to) see my doctor’s physician’s assistant every time I have an infusion.

Before, I HAD to see her or I couldn’t get my infusion. Sometimes that was a bit problematic (particularly because they are ALWAYS short staffed and they don’t usually have coverage for vacations) when my 4 weeks ended up landing on when someone was out of the office. I should be relieved that I don’t have to work around her schedule. But… now I can only see the PA once a quarter and my actual doctor once a year.

I am thinking there might be some interesting middle ground here. I mean… on one hand I don’t have to worry about my appointments coinciding with vacations. But I do have to worry about the fact that now they have scheduled my PA and my Dr to be at three other locations that they didn’t used to cover. That means that if I happen to actually need to see someone, my best shot is likely to be holding my fingers up to my phone camera so someone in a web-ex can say…hm… yep… you have fingers.

The “second best hospital in the country” has a funny way of showing that patients matter a tenth as much as $$$$$$$$$$$$$$$$$$.

Yeah… I realize that I’m bitchy. See above… my hands hurt enough today that they are making my stomach feel crappy.

Sigh

Love and Light
April
July 29, 2019

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My Adventures with RA Meds… RDBlog Week… Day 1…

You may, or may not, know my story.  If you don’t, you can find details here.  The back story is kind of interesting, especially if you want to know where my head was in 2011.  Reading back over it, I realized that I have spent 9 long years knowing I have RA.  I’ve come a LONG way (physically, location wise, mentally) in those 9 years.

During those years, I’ve head good experiences and horrible experiences with my RA meds.  I guess maybe it is a good thing, now, to reflect and consider that adventure…

When I was diagnosed, I was IMMEDIATELY put on prednisone to try to get the inflammation down in my joints.  I was also started on Methotrexate (MTX).  From the get go, MTX made me nauseous… as I went from 2 to 4 to 6 to 10 pills it made me more and more nauseous.  I would take my pills on Friday night as I was already laying in bed because as SOON as I swallowed them I felt dizzy, light headed and like I was going to throw up.  It was not pleasant, but it worked.  I honestly thought that was going to be my forever.

But I talked to my doctor (I miss Dr Booth a lot) and we decided to start on injections to see if that helped any of my side effects.  MTX, with injections, still made me kind of dizzy for a couple hours, but it was way better for me than the pills.   I could get an injections and still go live my life and (at least for several years) it was effective.

Sometimes I had trouble getting MTX (like when there was a shortage for a couple months) and sometimes pharmacies would give me grief (no, they don’t MAKE your MTX with preservative like you can get any LITERALLY any other pharmacy on the planet… you need to make your doctor write your prescriptions in the RIGHT way so we can take ALL all all all all of your money) but for the most part, my adventures on injections was pretty simple.

It wasn’t the be all and end all medicine for me, though.  It did about half the job and Dr Booth could still see/feel the inflammation in my joints.

So I started on Enbrel.   Stomach injections… pricey…. but for about a year IT worked the other half the way to being nearly (if not quite) “in remission”.  It was close enough that I could function nearly normally.

Then I had surgery.

AAAANNNDDD Enbrel decided it was done working for me.

Quick switch to Humera… which worked pretty well for me for about 18 months…. until I had surgery… annnndddd… that gave up the ghost as well.

The doctor said that the stopping working was probably only coincidental to the timing of my surgeries.  That sometimes they just only work for a certain amount of time and then stop working.  Yay…. She also told me that there are a lot of people who have the same story I did of working a while then stopping working because their RA doesn’t respond long term to those medications but that (in their INFINITE wisdom) the insurance companies will only allow the Dr to follow on rabbit trail to controlling the progression of the disease.  The cynic in me honestly believes that the drug manufacturers have enough pull on the whole freaking society that the reason you HAVE to take A then B then C is because they all want a share of the money.  And… when you’re talking anywhere from $2000 to $10000 a month it’s kind of a nice pie to be able to share in.

Then I started Orencia infusions.  Those have stuck the longest.  So far we are at about 6 years and counting.  They still are doing their half for me.  It means getting tied up in the infusion center for a couple hours a month, but that is kind of a small price to pay.

Also, MTX quit working so well for me and I started (two years ago now) on Arava.  I like Arava way better than MTX.  Even with the injections I still had some side effects… hair loss… dizzy for a couple hours… and I had to always travel with injection materials.  Arava is a one pill a day thing and I’ve had no side effects with it.  It is taking care of the other half of the situation for me.

So far, I’ve had no issues with getting my Arava and I’ve been approved to keep taking orencia until 2020… add in losing weight, exercise, and eating better and right now, I’m doing pretty good.  Knock on wood… I hope that continues for a long long time.

 

Love and Light
April
9/24/2018

 

 

But I Caaaaaaaan’t

I’ve been haunting a lot of websites lately trying to figure out 1. just how weird I am and 2. how to get to be a better me. I guess maybe that makes me even weirder but hey.

I’ve been reading a lot about can’t.

And I’ve been getting irritated.

“Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”  ~Albert Einstein

Girls can’t

Boys can’t

fat people can’t

skinny people can’t

people with RA can’t

people over can’t

I heard a lot when I was growing up all of the things that I was told I can’t.  I worked really hard to prove out that some of those were wrong.  Some stick in the back of my head and I fight the words EVERY SINGLE DAY.

There are a lot of things I know I can’t do.  I can’t “win” a half marathon (marathon) but that is because I never loved running when I was in a position to train that hard for it.  I suppose if I really REALLY trained now, in several years I might actually have a shot at at least winning my age group. I’m not sure if I care that much, and that is on ME.  It isn’t that I can’t.  It’s that I won’t… that I choose not to.

I can’t do a full marathon.  NOT because I can’t (believe me I have been thinking very seriously about training for one… and maybe some day) but because I can’t justify in my head putting in that much work to git-er-done.  I am not incapable.  I choose to not put my effort there. For now.

I got all caught up in my head that I couldn’t lose weight.  I resented being told by the doctor that WW was the magic bullet and that all I needed to do was follow their sheeple and I would magically be perfect. “THE PLAN” works.  It completely works if you work the plan.  I just went out and bought (thank you for the Salvation Army 50% off clothes sale for Memorial Day) pants that are 2 sizes smaller than I have worn in YEARS and they fit (some actually are already baggy).  It works.  I’m kind of scared that when I reach goal that I won’t be able to maintain because the math really doesn’t work in my head still.  Anyone can lose weight if they are running 2 – 10 miles a day and eating 900 calories.  The trick is to be able to maintain a healthy weight and a healthy lifestyle.  I’m trying to learn.

I thought, I can’t.  But I have, I am.

I was registered for a half marathon when I was diagnosed with RA. I immediately went out and googled stuff (duh… and DOH) and what I read suggested that I can’t do half marathons (or 10ks or whatever).  My rheumy suggested that I probably ought not (at least then) run.  I was not controlled in my disease.  I am still only marginally controlled… If I insisted on this, I should train to walk very fast.  So I did.

Only a couple months after diagnosis, and just a month (maybe 6 weeks) after starting methotrexate, I finished my first half.  I almost quit.  Thanks to Monkey Butt walking out to walk me in I didn’t.  But I almost did.  My hips were screaming about an 18 on a scale of 1 to 10 and it was all I could do to move.  But I was stubborn and I was determined and I did it.

And I did it again.

And again.

This morning I have been reading.

One thing I read was the Cleveland Marathon Facebook page and I realized that my PR was even better than it should have been because the course was .18 miles longer than it was supposed to be (so I ‘ran’ 13.28 instead of 13.1 and I still shaved 19 minutes off my time).  That was surprising.  People are SOOOOO upset because there is a decent sized hill in about the middle of the half marathon course and it is a smallish brute.  Austin’s was way bigger.  And Cleveland had awesome signs to entertain you going up the hill.

Did you ever stop and think that a lot of life is kind of like a marathon?  There are hills.  There is pain.  You get tired.  There is rain and heat and utter exhaustion.  But you keep going.  You might bitch later.  You might whine that you can’t can’t can’t can’t can’t… but you can.  And you do.

Don’t get me wrong (and I know I could take a LOT of grief for the misunderstanding here)… not everyone is cut out to run.  Not everyone wants to, cares to, thinks about, running races (or running at all).  There are people with RA that are way more debilitated than I am.  There are people who’s bodies will not allow them to get out of bed.  There are people (I love you Bear) who struggle every day and finally take a deep breath and admit that they need assistive devices.  But we all have our challenges. There is no shame in needing help.  There should be no judgement in running our own races and learning what we need to learn from them.

And in trying to help each other up the hills.

If I was an elite runner (or an elite anything), I probably would have a different mindset.  I would be determined to win at all costs.  But for me, the races are mostly just life.  We are all in it together.  We are all running our own races, and we are running side by side up the hills, through the rain.  Sometimes we fall and need help getting up.  Sometimes we just do what we need to do and push through it all alone.

But you can’t give up.

You don’t know who is watching you.

You can sit down on the curb sometimes and cry until you can’t cry any more, but in the end you just pick yourself up, wipe the dirt off your butt, and keep plodding along.

Some time around mile 9 or 10 (or 19 or 20 as I hear tell) you start to feel so very very alone.  Sometimes alone is accurate.  And that’s okay too.

And when the course gets rough and the hills get long and steep, it’s okay to stop and catch your breath… rest a bit… and keep on plodding on.

 

Love and Light
April
6/2/2018

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Hydaway… nifty new water bottle

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This is an endorsement… but it is one on a product I bought deliberately and will buy again. Back in 2015 there was a really cool product on kickstarter and I remember watching their ‘ad’ and thinking that it was … Continue reading

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On Pulmonary Rehab, Ending Chemo and Radiation Treatments and Planning for Disney Half Marathon 2019

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It has been quite a week.  Started off very… um… white and cold with just about a foot of snow in our yard from the latest storm.  We got ice first then snow so it was a miserable few days. … Continue reading

On CBD and Achey Days

Cannabidiol (CBD) has been studied as a way to help with pain and inflammation of RA.  I know that it helps in other things as well, like my mom’s fibro and sometimes when she has chest discomfort from a cold.  I won’t pretend that I had my doubts about how much it could help the RA pain.  I’m nothing if not a cautious convert.

I also have to admit that it takes a lot to make me think twice about using Tiger Balm when I start to get achey.

But… When I won one of Vicki’s contests at Rainbow Sky, the prize I opted for was XXX special BooBoo Salve from Vicki’s Rainbow Sky Trading Company.  Rainbow Sky has some of the most interesting things.  I’ve been a long time fan of her BooBoo oil and salve.  It helps my headaches.  It helps when I have scrapes, bug bites and poison ivy.  She is a close family friend and when I won (one of the winners) one of her contests, she offered to make me up some special booboo salve.  She mixed some CBD oil in with the other oils.  It smells a lot like the regular booboo oil, which is a mixture of 43 (44 with my current mixture) essential oils in an all natural base.  It works really well in its “regular” formulation but the addition of the CBD really gives it some amazing kick.  On days when my back aches, days when my wrist of my fingers scream, it helps.

Only down side to BooBoo oil/salve is that it has a scent.  I like the scent, but since Bear has been having symptoms (and now diagnosis of) IPF, it triggers (so does my Tiger Balm) a spate of coughing.  It’s not so bad when I’m in a different part of the house or not in the same place as he is, but if I’m in the car with him, or in the same room with him, it triggers him pretty badly.  I know that a lot of people have a problem with heavy scents, even if they aren’t “chemical” based (and hey, it’s not like H2O isn’t a chemical or anything… so… yeah).  I’m becoming more and more aware of that sensitivity as time goes on… I try to be gentle with my fellow humans, as much as I can.

There have been times when I have really wanted to put on something to take the edge off.  Booboo oil… or salve… Tiger Balm… SOMETHING… but… I don’t want to cause more pain than I have to.  I have been where I know I would trigger him if I had used anything scented and I have gone without until I could be somewhere where it would dissipate before I was back near him.  The scent isn’t that strong, and honestly I like it as much as I like the Tiger Balm smell, but easing his breathing is paramount in my mind.

About the same time as Vicki was making me my special concoction, I got a sidebar from someone at Outch and they pointed out that Outch Ointment is a CBD and Chinese herb infused topical. And that CBD is widely reported to improve the quality of life of those suffering from RA (as well as many other conditions).  It provides a safe, natural alternative to other methods used for chronic pain relief.

I was chagrined to admit that I had never really researched CBD.  I had never never tried it.  I knew it helped (not really topically,  but orally) with Epilepsy and with chronic pain.  I have professed to be as holistic as I can be and yet I never tried this?

I looked up Outch.  It was started by Brian Bowen, a traditional Chinese medicine herbalist and nationally certified acupuncturist” from Colorado.  I read their “about us” pages and really liked what I read on The Philosophy page.  He kind of reminds me of a doctor version of Vicki.

 So, I let the representative from Outch send me a free sample of Outch.  I got a tube of the roll-on (adds camphor and menthol to the ointment version) and a pocket sized jar of the ointment.  The Outch ointment combines the ease of pain with the added benefit of having absolutely no scent.  I’m not sure how that works or how they managed it, but I can use the ointment in the car or sitting beside bear in the living room without triggering a coughing spell.

Today, I ordered a 1.7 oz jar of the ointment from Outch so I can routinely refill the little jar that came in the mail as the sample and I can just toss it in my bag and use it whenever I am around people.  I will be saving up a bit of extra money over the next month or so to send to Vicki to make me up another batch of her BooBoo salve with the CBD in it, too.  I’ll be saving for a bottle of the roll-on Outch, too because I really like the cool tingle on my back when I rub it into the muscle spasms.

I hadn’t done the research.

I had never tried CBD.

I am a convert.

Am I 100% convinced that it will cure RA?  No, I’m not convinced.  Am I certain that it helps when I ache?  Yes.  Even on the steamy, too warm, too humid days we have been having in up-state Ohio recently. EVEN when I’ve been typing too much or crocheting too much or pushing too hard mowing the grass… it helps take the pain away without resorting to pills.

Haven’t tried CBD?  I highly recommend a trial.  You can get straight CBD from Vicki to try or one of the mixes that these to places have.  What can it hurt?  You might be out a couple cups of coffee from either shop, but if it helps, it’s well worth it.

 

Love and Light
April

7/22/17

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Dear IF, July 21, 2017

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Dear IF The homecoming parade was kind of awesome the other night. Squirrel and I drove and parked on our way home from Cleveland. Bear walked from home and then walked back home. He made it with 25 minutes of … Continue reading

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Scared in the dark

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In the daylight, it’s easier to keep my mind busy, easier to not think because I’m thinking, easier to quiet the voices that whisper in the silence.  At night, not so much.  At night, all of the things that I … Continue reading

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For me, It’s all about the spoons

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So, ever since it really clicked with me about spoons and needing to conserve spoons (see The Spoon Theory by Christine Miserandino http://www.butyoudontlooksick.com) because if I don’t, I really really feel crappy, sometimes for days, I have been accumulating spoons. … Continue reading

My RA eyes are getting really dry

Well, while this isn’t new… it is definitely very irritating (in a lot of ways).

For the last several years it has been a given that I have dry eyes and dry mouth  (sjogrens).  It’s kind of getting old fast.  But the newest development has really started to get to me.

I have started to have dry crusty discharge at the corners of my eyes.  Yeah, I know everyone does now and then, especially when you wake up in the morning.  Mine has gotten to be like that only fifty times worse.  My eyes are like that almost all the time and a few times it has gotten bad enough that when I tried to clean my eyes it has scratched my lower eye lid.

I use Refresh lubricating eye drops several times a day but the relief is only temporary and then it keeps coming back.

I’m going to have to break down and 1. rat myself out to my rheumy on Monday when I go in for my infusion and 2. go see my eye doctor to see what she has to say about the new development.  So far, I think that the epithelial basement membrane distrophy hasn’t gotten any worse but only the eye doctor can verify that.

When my hands/feet/hips/shoulders/knees hurt it’s annoying and they hurt but when it comes to my eyes I really start to worry.  The fear, I know, is needless… but… it’s real and it’s there none the less.

Anyone else have this interesting development?  I have been doing considerable reading but it is still kind of new and concerning.

 

April
11/26/16