Hello Again! New and News from RA Lemonade

RA Lemonade Slice Purple SmWell hello there dears! It’s been a long time since we’ve had a chance to chat, I’ve missed you. One of the things I love about good friends though is that they can just pick right up where they left off, like they were never apart. Shall we? :)

While things have been quiet here, if you follow me on Facebook or Twitter you know I didn’t completely disappear. I decided I would work on bringing some of that activity back to the blog. I’ll spare you the long explanations of why I’ve been absent, but in the interest of a full disclosure quick update:

  • My RA was quiet for quite some time. Fibro figured that was a good opportunity to shine though, so the reprieve was not exactly a reprieve.
  • I’ve been through the pharmacological ringer for both, with varying amounts of success. I’m currently on no medication, and my doctors have said there is not much they can do for my pain. :(
  • I’ve been working to find ways outside of pharmaceuticals to manage my pain – again with varying amounts of success, but at least I feel like I’m doing something. My recent success has been diet related, and the next thing on my list is yoga. I tried a beginner dvd, but found there were still some things I couldn’t even come close to doing due to pain – the search continues.
  • I got married! :)
  • Blogging is fun, but not easy for me! I’m going to work on incorporating news into my blog (which has largely been the driving force of activity on my social media) in an effort to get better about producing content for you here.

There, now you are all caught up!

For my first news roundup, I have a few fibro articles I found interesting. Let me know what you think.

I have a love/hate relationship with exercise. Sometimes I feel better and it seems to help, but oftentimes it leaves me wiped out and far worse off than I was before. This article suggests some baby steps to find that perfect balance.

Exercise: Friend or Foe in Fibromyalgia? – ProHealth

http://news.google.com Mon, 05 Oct 2015 22:51:03 GMT

ProHealthExercise: Friend or Foe in Fibromyalgia?ProHealthWe have seen this before when multiple sclerosis used to be called “hysterical paralysis”, and lupus and rheumatoid arthritis were considered diseases of neurotic women. Just as some people wi …

Read more …

My personal experience very much echoes this next article. I spent a large amount of time on increasingly potent RA medications before I was finally diagnosed with Fibromyalgia, and it was determined that the bulk of the pain I was experiencing was due to that condition as opposed to the RA.

Fibromyalgia Symptoms May Mimic High Disease Activity in Patients With … – Fibromyalgia News Today

http://news.google.com Fri, 07 Aug 2015 14:47:02 GMT

Fibromyalgia News TodayFibromyalgia Symptoms May Mimic High Disease Activity in Patients With …Fibromyalgia News TodayResults from a recent study presented at European League Against Rheumatism Annual European Congress of Rheumatology (EULAR) showe …

Read more …

That’s all for today – I hope you are winning more battles than you are losing!

Love & Lemonade,



Perception is Everything

Thrill RideHello everyone. :)  Hope the day finds you well. It’s been a while since I’ve paid you all a visit, so I thought I would update you on my latest adventures.

Thrills, chills, excitement!

Ok, not really. At least not in the roller coaster-scary movie-sky diving-haunted house kind of way. As usual however, life has taught me incredible lessons through living and dealing with my conditions, and I’d like to share them with you.

The Search

Things have been a tad on the stressful side for me since my rheumy’s departure from the picture. Finding a new rheumy and juggling expiring prescriptions is not a fun day at the park – and if you compound that by having no insurance, you enter a whole new world of freaking out. Of course all the added stress does nothing for my RA; whether it’s coincidence or related to my worry, I’ve had 3 episodes in the last 2 months where my left hip ached so bad I could barely walk for a few days each time. I had this great, creepy, shuffling, Igor thing going on, that kind of made me laugh in between the wincing.

Despite that, I have an incredible amount of hope now.

Striking Gold

Sometimes you don’t know how good you had it until it’s gone. Isn’t that what they say? As true as that is, it’s also true that sometimes, you don’t know how good it could be until you try something else. From the moment I set foot into the hospital where my new rheumy practices, I knew things were going to be very different. My new doctor came in – accompanied by a student, as the hospital is adjoined to a medical college – introduced herself and her sidekick, and sat down to begin going over my medical history and what I’d been through since my diagnosis. She was incredibly thorough, spending close to an hour with me, and not rushed in the slightest. We went over all the medications I’ve been on, past and present, for both RA and fibromyalgia – and how each of them affected me. After the Q&A session, I got to put on one of those hot little hospital gowns while she examined my joints, movement ranges, and basic ability to function.

At the end of the examination, she said several things which surprised me.  The first was when she looked me in the eye and said, “Stop taking the methotrexate. It’s making you sick.”

Woo Hoo!

This was one of the best things I’d ever heard. For over a year now, every Wednesday I have felt groggy and drug out. On really bad days I would have a splitting headache and feel nauseous to boot.  I had been told that those were unfortunate side effects of the drug, and that coupling it with Humira was a common way to control RA symptoms – so the good outweighed the bad.  Since I’m not a rheumatologist, I didn’t argue the point.  My new doctor however did not agree.  She even went as far as to put it on the list of medicines to which I had an allergic reaction.  She also stated she wanted me off the steroids.  This was music to my ears – I’d been pushing to get off of them for some time; my previous rheumy had tried to pull me off them once, and when that didn’t go so well he was reluctant to try again.  She said we would look at all of my medications eventually, but we had to work with a little bit at a time.  She then directed me across the hall for blood work.

Before I even crossed the door, a voice from inside said, “Hi Karen, come on in and have a seat.” I was immediately seated and had my blood drawn – 8 vials. After she bandaged me up, I got up from the seat and crossed the doorway into the hall and a nurse looked at me and said, “Hi, Karen? I have some information here for you.” She then began to go over my calcium and vitamin D intake – a concern the doctor had expressed because I have been on steroids for so long. I proceeded to have a total of 16 x-rays done, checking my hands, feet, and knees for any erosion damage – where I was treated as promptly and kindly as all the other stages of the visit. It was hands down the most comprehensive examination I had ever had in connection to my RA, and culminated in changes that I have wanted to make but didn’t feel I had the support of my previous rheumy to do so.

Don’t get me wrong. I loved my last doctor. But a visit there was completely different from here. He was often rushed, and while he was very kind, he never seemed to have more than about 3-5 minutes to discuss anything with me. He was reluctant to change some of my meds; I understood this to a certain extent, since we had been working for years to get my symptoms moderately under control – but several of my meds had side effects that I was pretty miserable with. The methrotrexate made me feel like crap on a stick for 12-24 hours every week. The steroids and the Lyrica have caused me to gain a lot of weight. It was a slow creep with the Prednisone, and adding the Lyrica was like strapping a rocket booster on it. Getting blood work done previously meant traveling to another floor of the hospital, taking a number, and waiting 30-45 minutes. It was like different worlds.

The World in My Hands

I like the new one so much better – and I never thought anything was horribly wrong about the old one. It was all I had ever known when it came to treatment of my collection of chronic illnesses, and I had always made the best of it.

Perception is everything.

New Horizons

As a foot note to the incredible kindness and care I received at the new facility I’m going to – on the way out, even the parking attendant was awesome.  I was supposed to have parking validated if I was a patient to avoid paying the fees; he asked where I had been, and when I told him, he let me through with no charge and reminded me to get it validated next time.

I don’t know what they’re putting in the water up there, but everyone should be drinking it.

Within 24 hours the results of my blood work and x-rays were posted to a site I could use to track my tests and appointments and contact the office if I have questions. (The response time on this site when contacting them was 16 minutes – compared to the 9 days the site my previous hospital utilized for patients). Most everything came back looking good – a few blood tests were out of the range of normal, which I’ll ask about at my follow up, and my knees did show tiny bone spurs of some sort. No erosion damage from the RA in my hands or feet though, and everything else looked good.

So on to more adventures. I’m excited about the med changes; and a bit scared. I’m weaning down on the Prednisone now, and am going on my second week with no methotrexate. That leaves me on Humira, Lyrica, still some Prednisone, and one additional drug with a couple of supplements to address other conditions I have.  I’ve noticed a small increase in joint pain so far, but nothing severe enough that would make me want to turn back yet.

Crossing my fingers for better days.  I hope good fortune has touched every one of you as well!

Love & Lemonade,

Karen ;)

The Doctor Is… Out?

Any change, even one for the better, is always accompanied by drawbacks and discomforts. ~ Arnold Bennett

If there is one theme in my life that is prevalent at the moment, it’s change.  I suppose that’s true for most of us to some extent a majority of the time, but there are usually constants we can cling to during those transitions; for me even the constants all seem to be in upheaval.  That tends to be the nature of my life – I go through a few years of relative peace; where changes occur, but in singular events while the rest of my life is stable.  Then it’s like the clock strikes midnight, and boy do I wish sometimes I just turned into a pumpkin instead of what ensues, lol.  The last time this happened, about 3-4 years ago, in a 6 month period I went through a divorce, lost my job, was diagnosed with my first disease, had a surgery coupled with a possible cancer scare, and moved twice.  Those were just the big things, I left out little particulars like having to make the decision to decimate what little of my 401k I had to get a vehicle during the transition.  That kind of massive onslaught of change can be incredibly scary.  It means diving into the unknown – letting go of the familiar and bracing yourself for new frontiers.  If you didn’t initiate the change (and often even if you did), that can be unsettling to put it mildly.

I have learned that if you can find the strength to dig deep and hang on though, it can also be exhilarating.

The Clock Strikes Midnight

It was a beautiful albeit short change to fall here – I loved all two weeks of the gorgeous colors.  In this area it’s the golds that seem more prevalent and striking.  The tree outside my window is absolutely stunning for a short period of time, and I can spend hours just looking at it.  It’s over now, and all the trees are bare; the skies are grey most days, and while it’s not super cold yet, it’s getting cold enough to get all my joints aching more often.  The change going on outside has been an interesting accompaniment to the changes going on inside my life – an ironic sort of tandem dance, one that is either mocking or comforting – I can’t decide which.

I’ll be brief when it comes to my more personal upheavals; while so far it hasn’t been quite as drastic as my last episode of change, the changes have been every bit as hard to live through.  Like the seasons themselves, I’ve had a huge shift inside.  It happens to me with regularity, and generally prompts even more change and chaos to accompany whatever I already had going on.  Part of me hates that I am this way – and part of me relishes every minute of it.  Despite the incredible pain and chaos I always end up going through, which tends to be substantial, when I emerge out the other side and the bumps and scrapes heal, I always feel wonderfully – alive.  I mourn some of the things I lose along the way, but where I end up has always been better than where I started.

That makes me sound crazy, and chaotic.  But that’s me.

So on the list of my personal upheavals includes the disappointment from my most recent surgery; one that I am still attempting to heal from over 3 months after the fact, and ultimately was not successful.  Another impending move – to a much nicer place in a million ways, but one with enough unspoken strings attached to make it a marionette.  A complete turning upside-down of my relationship that has rocked it to it’s core, which has left me emotionally drained in ways I can’t even begin to describe; and finally a change in my medical care – which I never would have though would be scary until I discovered how much I relied on my relationship with my rheumy. Since this is primarily a chronic illness blog, I guess we’ll focus there. :)

The Dear John Letter

Now that it’s midnight, and my life is in full swing of upheaval, you can imagine I’m a touch…  sensitive.  So when I received a letter in the mail from my rheumy, I was afraid to even open it.  I’ve had the same rheumy since my initial RA diagnosis in mid 2010; he’s been a comforting companion and guide through the realization of how much my life was going to change; through all the multiple meds and their disappointments; the incredible scare when I was allergic to one of them, resulting in devastating health consequences that will follow me the rest of my life; the subsequent diagnosis of fibromyalgia on top of my rheumatoid arthritis; through each little victory as I’ve climbed my way up the prescription ladder to find combinations that make it possible for me to get closer to the ‘normal’ life I had before the onset of all these challenges.  I’ve leaned on him greatly; much more than I had ever realized.  When I opened the letter, and it said that he was leaving, I was crushed.

As if that in itself wasn’t enough, it’s much more complicated then just switching doctors for me.  Because I have no medical insurance, I receive all my care through one hospital system – they have put me on a program where they provide all my necessary medical care at no charge, minus prescriptions and a few outsourced labs.  This has been a complete Godsend for me over the last two years in light of my recent medical landslide of issues – one that I will never be able to express how grateful I am to have in place.  It has quite literally saved me in so many ways.  Without this program I would be tens of thousands of dollars in debt, and would not be receiving adequate medical care in an effort to stem the financial hemorrhaging that would occur.  My rheumy, who is leaving, is the only rheumy in the hospital system.  So in addition to having to get a new doctor period, until the hospital fills the position, I’m in an interesting spot to say the least for my interim care.

My last visit with my rheumy was brief.  He told me what a nice lady I was, and how I was going to be ok.  I didn’t pester him with questions about his departure; he looked exhausted, and I was sure he’d answered them enough times.  Ultimately, his reasons for leaving didn’t matter all that much anyway.  It was a sad visit for me, and left me feeling like I’d lost a close friend.

I have a new appreciation now for a good doctor and the difference they can make.  I’m not sure who my new doctor will be – if he will be as compassionate and understanding as my last one.  If he will understand all I have been through with my medications and the impact the side effects have had on my life.  If he will take the time to get to know me, or if he’ll just view me as another number, another appointment, another prescription.  I don’t know if he’ll even be a he to be fair.  I do know that I will never take an exceptional health care professional for granted again – and I truly hope my doctor finds fulfillment wherever he goes.  I know somewhere out there, there are some very lucky people about to get a new doctor that will take very good care of them.

The Candidates

So here I am, in the midst of my chaotic life shift, and I’m gonna need a new doctor to lean on.  As usual, I find the best way to deal with life is to find a way to laugh at it – once you can again.  After very careful consideration, these are some of the possibilities I’ve selected to replace my rheumy…

Dr. Peter Venkman
Dr. Gregory House
Dr. Evil
Dr. Frederick Frankenstein
Dr. Emmett Brown

I’m sure I’ve forgotten many great doctors that would be excellent candidates.  I did not include Dr. Who – I know he is popular, but I’ve never seen an episode and have no personal connection with his persona, so it didn’t feel right to include him.  I also briefly considered Dr. Ruth Westheimer, just because…  well, it made me lol.  But since her credentials are more robust then my current selection I left her off out of respect.  I’d love to hear any other potentials that could go on my list, so don’t be shy if you have a suggestion!

Love & Lemonade to you all,


How Are You?

Before you speak ask yourself if what you are going to say is true, is kind, is necessary, is helpful. If the answer is no, maybe what you are about to say should be left unsaid. ~ Bernard Meltzer

It’s such a simple phrase. An innocuous greeting in many people’s eyes, used as conversation filler, and not necessarily an actual indication of any interest in your state of well being.  Before my illnesses, I didn’t give the phrase a lot of thought.  Afterwards, that changed a great deal, which has caused me to reexamine my own motivation behind using it.

Now, when the question is asked of me, I’m almost paralyzed.  Like a deer in the headlights, I’m rapidly reviewing in my mind how I should answer.  Is this just a greeting?  An honest question?  Will I offend if I don’t really answer it? How much is too much for this particular person?

I suppose I never had that reaction before, because the answer was always relatively simple.  Even if things were hectic or less than perfect at the moment, I could still answer good, or fine, or not too bad – and I didn’t feel like I was being dishonest.

Now, the truth is some days I am not good, or fine, or even remotely close to not too bad.  And on those days, I’m usually struggling to maintain a positive attitude; and a seemingly simple greeting…  or question…  or whatever it was intended to be, has me tied in knots.  On those days I don’t have the energy to engage in some social semantic game, and I sometimes feel awkward and even annoyed – especially if I misinterpret the askers true intent and answer honestly.

That’s a lot of issues to have over three words and a question mark.

Of course there are many in-between stances based on the people and the interactions, but from my initial inquiries to friends, there seem to be basically two views.

How Are You – The Greeting

This view stands by the idea that this question is merely a greeting – idle conversation, not something intended to be answered on anything more than the most superficial level.  It’s like parsley on your plate – something to dress up what’s in front of you, but doesn’t have any real substance or purpose behind it other than that.

Is this even parsley? Not so sure…

How Are You – The Question

This view are those who maintain that the question is an actual question.  They have an interest in how you are doing, and are genuinely curious when they ask, and would like to know the answer.  It’s not parsley – they want to know the meat and potatoes of what’s going on in your life.

Mmm… no fluff, the real deal.

What Do You Think?

While in the past I had never thought about it much, I now give it a great deal of consideration – and I fall on The Question side.  I don’t understand the need to have this social fluff in conversation.  In my mind, it’s not fair to ask a question of someone and then put the onus on them to figure out if you mean it or not.  If you don’t really want to know – don’t ask.

I realize for most it’s just automatic – it’s somehow been melded into our general way to greet someone, and is now rattled off without much thought about what is actually being said, with the expectation of an equally topical answer before moving on to other conversation.  Maybe that’s part of the problem though.  Maybe instead of just talking on auto pilot, we should be more mindful of the words we speak, and determine beforehand if we actually mean them.

Am I crazy?  Definitely, but that’s beside the point.  How do you deal with the question how are you?  Is it a big deal, or has it never crossed your mind?

In the Company of Captains

We must free ourselves of the hope that the sea will ever rest. We must learn to sail in high winds. ~ Aristotle Onassis

If there’s one thing I’ve learned about life, it is that it is a constantly changing, shifting, rolling sea – and if I was going to survive without going crazy, I was going to have to learn to sail it.  Sailing the sea of chronic illness is no different. Sometimes it can be tough to find your sea legs, but once you do, you’ll be navigating those waves like a pro.

Ebb and Flow

It always seems like a mixed bag when I visit my rheumy.  A little good, a little bad, up your doses and see me in a while.  This recent visit was no different.  The good news this time was the tests from my EMG came back.  There was no discernible nerve damage, and I did not have neuropathy.  As for the intermittent numbness and tingling I’d been experiencing in my feet, it’s being chalked up for now as trauma to my nerves as a result of my plethora of medical issues as of late – I was told to keep an eye on it, and update him if it persists or gets worse.

I told him about my brief interlude with a pain-free existence, and the return of the aching in my hands after my surgery.  He agreed that something about the surgery likely triggered a reaction in my body to reignite the good fight against itself.  After examining my hands and making me get up and down a few times to check out my increasingly noisy knees, he decided to increase my methotrexate.  I consider that the bad news, since I’m already on enough drugs to qualify as a walking pharmacy, and I’m a little worried about upping the ante with my methotrexate hangovers.  Of course in the end if it gets me closer to those pain-free days, and allows me the continued use of my hands into old age, it will be worth it.  Full steam ahead.

A Captain Among Many

I was a tad nervous about the notion of having to be a captain.  The first time I ever went out on the ocean I was about 6 years old.  I was on a family trip with my Grandparents, and we went on a boat ride down in Florida on a glass bottomed boat, where you get to go out a ways off shore and then go into the bottom of the boat and see all the sea life.  It would have been truly epic, except I had no tolerance for the bouncing about we experienced.  Half my time was spent leaning over the edge of the boat turning green, the other half was spent in the cabin with a pregnant lady who looked about as good as I felt, being force fed crackers by a crew member while they made me take deep breaths.  I didn’t get to go into the bottom and see all the cool sea life – something about puking children spoiling it for the rest of the tourists I imagine.  I was so disappointed at first.  But as I began to feel better, and we were heading back to the shore, I stood at the bow of the boat.  I’ll never forget the smell of the ocean.  The sound of the waves crashing against the boat.  The feeling of exhilaration and freedom as we cruised over the water.

Despite the rocky start to my sailing career, I’ve become quiet adept at navigating the stormy seas – at least the ones presented in life – and now the ones presented in chronic illness as well.  I’m in good company too it seems; there are a great many awesome captains out there.

Just a few captains I’ve enjoyed meeting over the years.

I hope all you fellow captains are weathering your storms, and enjoying the crashing waves on your bow.  Always remember, if you start to feel sick and the sea becomes too much – take some deep breaths, eat a few crackers, and get back up on deck.  There’s lots to love about the ride, even if it’s not what you expected.  Love and lemonade to you all. <3

End of Summer Serving

Is it really the end of summer already?  Has it actually been almost 3 months since my last post?  How on earth did that happen?  Bad blogger, bad, bad, bad.  Well, I guess I should fill you in!  I’d like to say it’s been uneventful, but is that ever really true?  Guess I’ll connect the dots left by my last entry. :)


I did have the EMG to test for neuropathy – and while it wasn’t something I would sign up for or arrange to do at parties, it was certainly not as bad as some of the horror stories I read online.  They don’t make much of an effort to quell any of your fears at the office though, that’s for sure!  To say I was a tad intimidated on entering the room is something of an understatement.  For starters, the ‘examination table’ was less than inviting.

Despite the plastic pillows for your comfort, this is not exactly a welcoming scene.  I took a deep breath…  no worries, right?  How bad could it be?  Then I looked over to the left.

Hmmm.  Well that’s not helping.  I apologize for the slightly fuzzy quality of this photo.  It certainly wasn’t because I was shaking from nerves or anything.  >.>

I tried to allay my fears by envisioning how this might turn out.  After all, being electrocuted has led to a stage career in the past – think of all I could become!

In the end as I said, it wasn’t all that bad.  Disappointingly I did not emerge from the room with a new found talent for dancing and singing, but I was very relieved nonetheless.  I have not received the results from that test yet – I will get them in about 2 weeks.

The Pain Reprieve

After my adventure with electricity, I settled in to see what the effects of my newest drug cocktail would be.  And then something amazing happened.  About 2 weeks after my change in meds, I was experiencing virtually no pain at all.

As I type that, I realize how woefully inadequate just stating it is at conveying the immensity of the impact it had on me.

I was experiencing virtually no pain at all.

Yeah, that makes me smile inside every time I think of it. :)

For almost a 2 month period, I did laundry without grimacing.  Cracked trays of ice without wincing.  Woke up without aching.  My Viking could rub my back without me flinching from his touch.

I felt almost ‘normal’, whatever that is.  It was the first time in almost 2 years, and it was wonderful.  I relished in every moment of it, and felt quite literally euphoric every single day.  I was thankful for every second of it, took none of it for granted, and marveled at being able to do every day tasks without having to steel myself against the consequences.  It gave me a renewed sense of hope to have that short break.

I’m sure I don’t have to tell you how precious hope is when you live with chronic pain.  I wish I could have split up my pain free stint into sections and given one to each of you to keep in a box for when you needed it most. <3

Sadly, it didn’t last forever.

The Surgery

When I was first diagnosed with RA in August of 2010, I was put on Plaquenil.  While Plaquenil is (from what I understand) generally very well tolerated, it turned out I was allergic to it.  The subsequent snowball of what ensued due to my reaction to the medication is something that led to some of the darkest, most horrible moments of my entire life – things that I am still working to physically recover from to this day.  I touched on the subject briefly once before in Isn’t It Ironic – The Joy of Immunosupressants.  It is a story I intend to tell one day, when I figure out how to verbalize and relay the events without creating a novel instead of a blog post.

So I was scheduled for surgery at the end of July to hopefully correct some of the issues I am still dealing with.  This was my second surgery as a result of my allergic reaction.  It went well – though I didn’t understand some of the ramifications of my healing, recovery, and what to expect as well as I wish I had before going in.  Not that it would have changed anything, but the mental prep time would have been nice!  The surgery seemed to go well – I won’t know if it was a success until after it’s all healed though, and since I’m on 3 different immunosupressants to control my RA (much to my surgeon’s dismay – something he reminds me of every time I see him), it’s going to be a few before that happens.

Unfortunately, within about 3 days after my surgery, a great deal of my pain returned – some of it with a vengeance.  While I haven’t seen my rheumy since the surgery, I assume that it triggered some kind of flare – just so the pain of the surgical wounds wouldn’t be lonely during my healing period, lol.

Lemonade Anyone?

So that’s my 3 months in a nutshell.  I hope life has treated you all wonderfully – and that you can forgive me for the Lemonade shortage over the summer!  Love and hope to you all.

Electric Butterfly

God changes caterpillars into butterflies, sand into pearls, and coal into diamonds, using time and pressure. He’s working on you too. ~ Rick Warren

Hello everyone. :)  It’s been a crazy month this May, I’ll be glad when it is over!  Too much going on all the time, which is a big change from my typically quiet, boring, I-love-it-that-way life.  Most of it has been fun – lots of birthdays, visits, and get togethers – but man am I exhausted.  Thankfully everything should be wrapping up soon though and returning to what passes as normal in my world.  I did pick up a new batch of lemons, but oddly enough I don’t even feel like I did.  The truth is I just got a new label, and outside of juggling meds and new tests, it really doesn’t change much for me.  Let me explain…

The Lemons

The whole uber-rheumy visit completely fell through.  Turns out uber-rheumy’s are quite expensive (shocker I know, lol).  Being as I don’t have insurance (which makes all this that much more fun), I’m restricted to getting all my care through one hospital network, where I have been lucky enough to get on a program that covers my medical visits and most of my lab work.  That still leaves me all my prescriptions and some tests that aren’t covered, but it’s much better than my back up plan, which involves cheap vodka and ice packs to control my symptoms.  I had hoped to be able to swing the visit anyway, but it just didn’t work out.

The Savella that was supposed to help with my ‘myalgia’ pain maybe helped a little – I’m not sure – but it certainly gave me a whole host of other issues.  For one, every evening around 6pm or so I have a hot flash like nobody’s business.  My cheeks flush, I start sweating, and every fan in the house goes on.  They increase the dose in graduating steps, and once I hit 50 mg I started experiencing about 2-3 hours of intense nausea every day, so that was short lived. Even on the 25 mg, between the hot flashes and waking up swimming in my own sweat (ewwww…  I know, disgusting – I hate sweating), what little benefit I was receiving was outweighed by the discomfort of the side effects.

So yesterday I went back in for my follow up.  It’s kind of ridiculous to call it that; a follow up sounds like a one time thing, and I’ve been ‘following up’ every 3-6 weeks for 2 years now, lol.  At any rate, I explained everything to my rheumy – who laughed when I was describing in colorful analogies what all that felt like.  I also filled him in on some of the other medical adventures I’ve had outside of his realm, and something new that has popped up recently with my feet.  It doesn’t happen all the time, but maybe once a week or so for a bit over a month now my feet will start to tingle with pins and needles for no reason.  Sometimes I get an itchy or burning sensation too, or alternatively a numbness.  I almost didn’t even mention it; I realize that sounds crazy, but it seems like there is something going wrong every other day, and typically the things that scream the loudest are what get my attention.  After taking everything into consideration, my rheumy laid out his new plan.

An increase in my Methotrexate since my blood work came back okay.  Decrease the Savella in order to save my sheets and my sanity.  Toss a new med, Lyrica, into the mix.  According to him this will help with…  wait for it…  the Fibromyalgia pain (first time he used the word directly, though I noticed after glancing at the comments on my records that was what he had determined last visit as well) and what he thinks is Neuropathy pain I’m experiencing in my feet.  SCORE!  Two new conditions in one visit!  I guess to be fair the Fibro he had alluded to on my last visit, but it was more danced around and wasn’t really addressed directly.

The Neuropathy is just an ‘educated guess’ at this point…  I get to go have an EMG done next week to determine if that is the case.  I’m told this is where they will stick me with needles and then shock me to test my nerves.  I can’t tell you how excited I am!  Every time I get stuck with a needle I’m always thinking, you know what this experience is missing?  A nice shot of electricity!

I’ve actually read a lot online about it – and while there are a fair amount of horror stories out there, there are also a lot of people who say it isn’t that bad.  When I was first put on Humira I did similar research, and actually ended up scaring the crap out of myself after everything I read – so much so that my anxiety was off the charts when I had to give myself my first shot.  I literally laughed almost hysterically afterwards, because while it’s not something I’d do if I didn’t have to, it wasn’t ANYWHERE near as bad as many of the testimonials I read made it out to be.  So I’ll be crossing my fingers that this is the same way.

The Lemonade

As I mentioned in the beginning, after all of this I really don’t feel like anything’s changed.  My pain hasn’t changed, I’ve just got (possibly) a few new names for it.  More drug juggling, but that’s a given every time I go in.  I did have to do some research into finding creative alternatives to paying retail for the Lyrica (an extra $100 a month towards prescriptions is not really in my budget), but I think I’ve got that covered and will be fine – and on top of that I discovered I could get a few of my other prescriptions for much cheaper as well.

So in the end, it’s all good.  I’ll be saving a little money and have some new options that may help with the pain.  I’ve reached 100 followers between this blog, Facebook, and Twitter (Yay! Thank you so much <3)  I’ve been blessed with a wonderful man, the resources to be able to maintain my expensive medical condition collection without having to take up residence on a local bench, and it is one of the most beautiful days outside you’ve ever seen.

And one of these days, I’m going to wake up as a diamond and pearl encrusted butterfly. ;)