Fibro, RA & Health

Thanks to the meds making the longer hair fall out faster (and look way more scraggly and raggedy), this is how I ended up having it cut. I haven't had it this short since I was a pre-teen, and I HATED it back then. So much for my vow of "never again". It is slowly ... very slowly ... growing on me, but I still hate the reason why it had to be done, and the amount of grey in it. I can't even color it, as it would make it fall out faster.

Another month, another thing to try!

This is really beginning to feel like a neverending struggle to find the right balance of medications for my RA. I am now on a stronger dose of methotrexate than I was on the first time, and it has me back up to about 80% of the functionality that I had before the RA hit last year. Now we're going to try replacing the Enbrel with Humira and see how that goes. I've sorted out the copay card, and am now trying to get the insurance company's specialty pharmacy to schedule delivery.

The hair loss has continued, but seems to be settling, for the moment. I ended up cutting my hair shorter than it has been for about 40 years. It was a bit heartbreaking at the time, but the cut is slowly growing on me. Mostly. More or less.

In other news, Adam and I celebrated our 19th wedding anniversary 2 days ago. Wheee! It seems like yesterday AND forever at the same time.

For those of my friends who like electronic music, especially with a Nine Inch Nails sort of sound, my friend Nick is releasing his first album next week. Check out The Static Architect on Facebook or go directly to The Static Architect web page.

No, I don't mean my sanity -- that was lost long ago. The combination of methotrexate and Enbrel is apparently enough to trigger noticeable hair loss in me. My rheumatologist seems to think one of the hair and nail formulas with lots of biotin in it will work wonders, but we shall see. If it continues at this rate, I will have my hair cut considerably shorter, and hope that it helps slow the loss a bit.

Meh.

I'll try to make this brief(er) than my last post. No promises, though!

Dad had issues last year with blood clots in his legs, and it turned out to be a hereditary problem that he got from both parents. I tested positive recently for the same gene, and my doctor put me on baby aspirin and sent me to a hematologist. My folic acid intake has now been increased five-fold from what the rheumatologist put me on, and I'm on a hefty amount of B-12 as well.

Let us not forget the blood work, "just to be sure" there's nothing else wrong. I had the phlebotomists snickering when I looked at the long strip of vial printouts and brightly asked "Am I going to break my record?" Fortunately, my "record" of 16 vials in one lab visit is intact, but just barely, as they took 15 vials of blood from me. It ... wasn't an easy draw. It took them a while to find an acceptable spot, and even with using a hot pack on the spot for several minutes, it took a bit to coax that much blood out. Bleh.

Despite lots of initial mess-ups by the pharmacy that I need to use for my Enbrel, I finally received it and have had my first two shots. It may take a couple months to see much effect from it, but it was a decidedly odd feeling to inject over $1000 worth of medication into my body in under 20 seconds. Yep, the source where I found the $2000+ quote for the 4-pack was wrong, and various drugstores sell it for over $4000 a 4-pack. Part of that crazed cost is that it is a "biologic", not just a basic chemical compound, and that makes the formulation process a lot more involved and expensive. Thankfully, my cost was zero. After 6 months, provided my insurance via the ACA is still going, I'll pay $10 a month for it. I'm not going to think about the alternative right now. Stress is a Very Bad Thing for me, especially now that I am on two immune suppressants.

Other than running around for medical stuff, I am mostly hibernating as much as I can in between EQ2 events. I'm down to taking 2.5 mg of prednisone a day and my fibro pain levels are going through the roof. (I was on 15 mg for months and have been tapering down now for a couple months.) I pretty much expected the fibro pain to go back to the old normal, and a week of unseasonable rain helped it go even higher. Today, at least, is sunny, but then the next several days are going cloudy and wet again. When the barometer stops doing it's imitation of a rollercoaster I should get back down to a pain level of 6 or 7 again ... I hope.

Enough about the medical stuff.

Adam's still burning the candle at both ends and is a bit squishy in the middle as well, but things should settle down a bit "soon." We still don't know when his contract with Daybreak could end and he has an application in for permanent jobs there, but nothing solid on the horizon. His hard work to get his bachelors degree while working fulltime, though, is almost done. He is working on a final group project now and should be graduating in March. He is also continuing to write and is submitting stories here and there.

I'm chipping away at a huge to-do pile for the EQ2 site as spoons allow, but I tend to end up finding even more things that need to be done or updated than I have energy to deal with. I probably should put out another call for volunteers to help update/write guides for the site, but every time I have done that in the past it has made more work for me and very little/nothing from the volunteers. (I had better luck on the art/screenshot front, with folks lasting a bit longer, but there's been nothing on that front for quite a while.)

I'm thinking about learning some simple recording software for doing in-game video tours of new content in addition to my standard EQ2 event and expansion previews. It will likely have to wait until the event mania is over for a couple months (April through June), but if anyone has any recommendations in the meantime, I'm all ears!

I promise, there will be some positive stuff mixed in here. I try to find the silver linings, and there are some to find, but I need some gumpy time for all this, too.

Actually, by this point, darnit, I deserve some grumpy time!

The changeover to methotrexate shots finally got off the ground, and lessened the side effects considerably. Since I didn't like being nauseous all the time, this was a great boon. Having an acupuncturist offering to do the shots during my weekly treatments was a HUGE boon as well. (So was having a hubby willing to take over on weeks when Pam isn't available.) But ...

Of course, this is me, and my messed up body, so you knew there had to be at least one fly in the ointment, right?

As we're tapering me off the steroids my index fingers are acting up more. So is the rest of me, but the index fingers, where the RA is the worst, are the most concerning. Yep, the methotrexate dose isn't enough to handle the RA load.

At my rheumatologist's appointment yesterday, it was decided to add Enbrel to the mix after all. Another weekly shot, another set of hoops to jump through. I'm waiting for the phone call to schedule a time when the refrigerated delivery can be signed over to me.

I'm also waiting to go into sticker shock at that time. To give an example of why I am braced for sticker shock, my monthly Savella prescription, before insurance, is a bit over $300 at last check and I end up paying $70 for it. The Enbrel? A month's worth of weekly shots, autoinjectors, etc runs over $2000.

Thankfully the manufacturer has a "support card" to cover out-of-pocket expenses of up to $12000 a year or it. The downside is that it requires that we pay the pharmacy then file for reimbursement, and there's no telling how long that process will take each time. It is still a net gain, but extra effort to make sure everything gets filed right away, money tied up that could be used elsewhere, etc. It is still a silver lining, if a slightly tarnished one.

I just got off the phone with my primary care doctor's office. Dad has had issues with blood clots, that turned out to be hereditary in nature, so I had a quick blood test done on Monday to see if I tested positive as well. Yep. I do. I go in next week to talk about it, and see if anything needs to be done in the near future or not. Dad and his dad didn't get them until later in life, but my body is so messed up that later could be much sooner.

Oh yes, why was I at my primary care doctor's office on Monday? Shingles. Again. On the left side of my face. Again. Thanks to already being on prednisone, and catching this early (she had a cancellation the same day as the outbreak started, with JUST enough time for me to rush there after I hung up the phone), the visible outbreak has already faded. The nerve pain on that side of the face, however .... Let's just say I am very grateful to have gabapentin on hand. I've still got a week's worth of horse pills (the acyclovir pills are large, and need to be taken 5 times a day) to get through, so I expect the pain will be ramped up for a few more days.

Ah well, it is what it is. It isn't anything terminal, for which I am very grateful, and I'll muddle along with just a few extra primal whimpers now and then.

In other news, we're not sure when Adam's contract is going to suddenly end. He could just walk in one day and be told they don't need him anymore. That's not nerve-wracking at all. Nope. Not a bit!

Meanwhile he has about 2-ish(?) months to go before he has his degree. He's been burning the candle at both ends with work, working out and his classwork, but the end is in sight on the class front at long last. I'm so proud of him. It isn't an easy load, to be sure!

The work on my website for the expansion was a huge amount of information to process and document in a very short period of time. I got it done, but I'm still finding bits and pieces of articles that need tweaking. I also survived testing and documenting the winter holiday event. To call me tired right now would be a massive understatement! At least the website stuff is (mostly) done until sometime next month, when the Erollisi (Valentine's) Day stuff will need to be tested then documented! And then comes Brewday (St. Patrick's Day) and Bristlebane Day (April Fools+) and then sometime in April things will mellow with regards to the website for a few months. {fingers crossed}

More next week. I'm low on spoons and trying to conserve where I can.

Last, but not least, my heart and thoughts go out to my Uncle Jim and his large clan right now. My Aunt Beverly lost her own battle with failing health this week.

I just had my 6-week followup on the methotrexate with the rheumatologist. On the good news front, I've been on it long enough that we're ramping down my prednisone dosage some more, and will ramp it down even more in another 3 weeks. On the mixed news front, she is increasing the methotrexate dosage a little more, and wants me to go to a shot form. It "should" mean less side-effects, which would be divine, and be a bit more effective. It will also mean self-administering the shots every week, though, which is unfun for someone who dislikes needles as much as I do. Bleah. Anyway, the plan to start on the shots with tomorrow's dose may have hit a snag, since she wanted a preservative-free subcutaneous version, and my pharmacy has a preserved intramuscular version. I'm leaving them to sort it out, and it may or may not mean using a different pharmacy for that one prescription. (I am too happy with them to want to swap pharmacies for the rest of my prescriptions.)

While she originally wanted to put me on Enbrel as well, she is now holding off on that, as they prefer to wait "at least 3, if not 5" years after the thyroid cancer before going on that, and it won't be 3 years until March. We'll see how well the methotrexate does to keep things under control as the prednisone dose ramps down.

In other news, my rheumatologist did some poking and prodding, and has decreed that the issues with my right hip are NOT osteoarthritis, as I was told several years ago. It is bursitis. She'll want to give me shots for that, as well, but not until I'm fully off the steroids, etc.

That's pretty much it on the medical front. I am beyond exhausted, and busy as can be with stuff for the EverQuest 2 expansion that is coming up in 2 weeks. I have a LOT of article writing to do for my website, as well as screenshots to deal with, etc. and I am hoping I can find some more spoons ... somewhere ... to keep me from hibernating until after it has launched.

My endocrinologist called today, after being out of the office all last week. My thyroglobulin levels are once again undetectable.

What does this mean? The high number from 2 weeks ago was, indeed a lab error, and all the resulting 2 weeks of stress because I "might" need surgery was unneccessary stress. There is zero need for sugery, it is business as usual on the thyroid front, and I'll keep having my blood checked every 3 months.

I am SO relieved. There's enough going on with my health, without having the spectre of surgery also looming over me.

So, the redo on the lab work on Monday "should" have had results by now. After a 10-minute wait on hold just to speak to a human being, I found out that my endocrinologist has been out of the office this week, and since he needs to review the results before they're displayed on the patient portal website, much less any information being released to me verbally, I have to wait. So, I get to wonder all weekend if I really need surgery, or if this has been an epic false alarm.

In other news, I've done my third weekly dose of methotrexate and ... blarg. It is definitely sapping me of energy, making my stomach unhappy, making me have a bit of tightness in my chest for the first 24 hours, etc.

So, now I get to be grumpy and nervous all weekend while feeling even worse than usual.

This, too, shall pass. but ... MEH!

Ugh. Just ugh.

Yesterday, I went to see my endocrinologist for a followup. Amidst all the RA and liver mayhem, there was also a worry because I was on half the recommended dose (and dropping) of synthetic thyroid hormone for my weight, and they still couldn't balance my thyroid levels. The ultrasound showed what might have been scar tissue, or might have been small bits of thyroid tissue regrowing, so the blood work I had done last week was the deciding factor. It showed that my thyroglobulin levels were suddenly rather detectable, which didn't necessarily mean the cancer was back, but that there was at least some scrap of thyroid back in production. He told me that it was "worrisome" and that since the scraps of thyroid were in the "visible to the naked eye" range, that radioactive iodine was not recommended. Rather, it would need surgical removal. I wanted to cry at the thought of more medical invasiveness. I really did, but it would have taken too much of my dwindling energy. (More on the dwindling energy down where I talk about the methotrexate.)

Today I was awakened by a call from the endocrinologist saying that the lab just called him regarding that same thyroglobulin level (from lab work done last Thursday) saying that they are having issues with the machine that does that test, and they're sending my labs offsite for rechecking. We'll have results in 48 hours or so. If the recheck of that lab work shows my thyroglobulin levels back in the undetectable range, then we'll write off the stuff on the ultrasound as "just" scar tissue, and continue with the every 3 months blood work. If the levels are still detectable, then I talk to the surgeon. I'm trying to stay hopeful that it was just a lab error, I really am, but I am almost afraid to get my hopes up at this point.

Also today, after I got back from picking up a prescription, I got an automated call telling me that my doctor wanted to schedule some lab work. So I got to sit on hold for several long minutes to find out which doctor ordered what labs without telling me. Apparently the gastroenterologist ordered an abdominal ultrasound without talking to me about it. Really? She'd already done a specialized fasting ultrasound to check out my liver, already had them do a fasting abdominal MRI (I still have the fading needle bruise from 4 weeks ago when they blew out a vein trying to run the contrast fluid for the MRI), already had them do a liver biopsy. All of that to find what we already knew - it is "just" fatty liver. What more needs to be said?! Now they want me doing an hour drive each way just so their lab can be the one to do the work? Nope. IF, and that is a huge if, they found something else that needs checking, we'll schedule it up here in North County. It is the same network, just a different scheduler. (Yay, more time on hold, go me!)

I started on the methotrexate for the RA on Friday, on what will be a gradual ramp-up in dosage for the next 4 weeks. It caused enough stomach upset and nausea that it was around 4 a.m. before I fell asleep, and Saturday was an uggy day. My energy levels are slowly returning to normal, but ... blarg. The side effects for this can be pretty brutal, and I will be continually reminding myself that it is still far better than having my immune system destroy my joints, then maybe start in on my organs as well. (Yep, folks see the "arthritis" and think it is just joint pain and swelling, but this is not the osteoarthritis most folks think about when they hear the name, but the destructive kind.)

Today I gave myself a sad reality check with regards to the methotrexate. My bangs are getting long, and starting to flop into my eyes too much. I was partway through the thought/planning process for going out to get a trim when I realized that would be a waste of energy and money. The methotrexate may make me lose a lot of my hair in the next 3-4 weeks, and until I see if it does, there's no sense in getting a professional cut. Maybe I'll just attack my bangs with some shears in the interim.

Yeah, this week is just shaping up to be ... ugh.

Those who know me from long ago remember one me, who used to be able to laugh and joke a lot. "Bouncy" was one word used a lot. "Cute" was another, though some who used it made it sound more like a curse than a compliment. 

Those who met me after the fibromyalgia really started getting bad knew a quieter, moodier me, prone to "wearing my shoulders as earrings" as I'd hunch from the constant pain, etc.  It got so bad that physically I became a virtual hermit, only really getting out of the house for the chiropractor, the grocery store and such.  My 2005 Celica is not yet at the 5000 mile mark for mileage, if that gives you any ideas of how bad it had gotten!  (Meanwhile, I've put wayyyyy more "miles" on my keyboard than most folks do, during that time, escaping to the distractions of online worlds as a form of pain-blocking.)

 Starting the Savella helped in the fall, but once I settled into a new baseline for the pain, and winter, such as it is, hit here, it was almost back to the same-old same-old. I'll candidly admit, after the fact, that I was getting close to being clinically depressed, due to so many years of constant, never-ending pain.

 I'm still in pain. There has been no miracle cure.  There is, however, a new me.

 Sort of.

More like the old me, starting to return after over a decade of hibernation. The process will be a slow one, but the first steps were very noticeable.

I started up gentle Hatha yoga 3 times a week, starting at the beginning of June. Last week, I went mall-crawling for the first time all year, then went back and got a body wave (perm) the next day. Next week, I get a professional hair coloring done, to more properly cover up the grey.

And I'm doing it all with a huge smile on my face.  I'm reclaiming the old me one gentle stretch at a time.

The next several weeks are going to be busy, with EQ2's Tinkerfest, the SOE Block Party, the SOE Fan Faire in Vegas, etc., but please, folks, help nudge me about mid-August if I've not started up a blog series. There are many out there with whom I want to share several fibro-related notes that I learned the hard way regarding massage, chiropractic, yoga, and even some food sensitivities that may help my fibrofriends out.  Old me or new me, I'm still prone to procrastinating and getting side-tracked, and if I'm getting enough nudges, I may get enough "oomph" to get them written for you!

I have now been on Savella for 2-1/2 weeks, and I've gone from "cautiously optimistic" to downright "happy". My mood is definitely better than it has been for months, and the pain, while still there, is lower than it has been since spring. There is still plenty of room for improvement, mind you, especially on the pain front, but every little bit helps when you're dealing with a chronic illness that saps your energy and mood as badly as fibromyalgia does.

The blood pressure worries seem too be a non-issue, as my blood pressure is back in the normal range at long last. (This sort of helps prove that a chunk of my blood pressure issues are from the constant fibro pain.)  126/87 is the best I've seen for a while on the blood pressure front, and if I can keep it down, perhaps I can reduce the amount of blood pressure medication that I'm on.

 The difference in mood and energy is very visible.

I regularly hit up the Alberston's deli for roast beast and meunster cheese. Often, I shamble through the store - eyes a bit glazed, possibly limping a tad if my hip is acting up, and so forth. Today, I practically bounced up to the counter, and was pleased to see one of the "regular" deli staff waiting to serve me. Somewhere in the depths of my often-fuzzy memory, I seemed to remember that his wife also suffers from fibro, and I was eager to share the recommendation. Sure enough, she suffers from lyme disease and fibro, so I suggested that she look into Savella.  He commented on how much better I seemed, compared to my usual, and was not only glad to get the medication name, but also my doctor's name. (They're new enough to the area that she hasn't settled in with a good doctor for the fibro, and I'm pretty pleased with Dr. Shali.)

Time will tell if this will continue to help, but after this many years of coping, it is so very nice to have hope once again.  I'm calling my doctor right now to update her and ask for her to prescribe this for me for the long run!

For those who have been following me on facebook for a while, you may already know some of this. For those who are just catching up with me now, as I slowly get the blog reformatted and resurrected, here's a bit of a recap.

 I've been trying since mid-June to get a prescription for Savella, which became the third drug approved by the U.S. FDA for the treatment of fibromyalgia. 

This year has been the worst year yet on the pain front, and I'm starting to have to really struggle to avoid slipping into depression.  I know I have a lot of things to be grateful for, and that I'm in far better shape on some fronts than many who suffer from fibro (including many friends and relatives), but as my pain levels continue to peak without respite, and my energy levels and motivation hit what seem to be all-time lows, it is getting harder and harder to keep my moods on anything remotely resembling an even keel.

Naturally, the added weepiness and moodiness gets me irked at myself, as I remind myself that I am one of the "lucky" ones among the fibro community (no need for a fulltime job, no kids to care for, etc). Getting irked at myself, of course, triggers more moodiness, and ... you get the picture.

Anyway, I've been stubborn for years about taking as few meds as possible and "just dealing with the pain". That went right out the window this year, however, and I'm now taking darvocet daily, just to get through the day (and to get more than 4 hours of pain-filled restless sleep a night!)  I need to at least try something to dig me out of this accelerating downward spiral. Even if it doesn't work anywhere near as well as hoped, or if I find I can't tolerate it (like my eldest sister, Annette), I will feel like I've made some progress in trying to get this illness back under control.  (Attitude makes a huge difference when coping with chronic pain!)

So, I contacted my doctor's office for a consultation in mid-June, and finally got in to see her in mid-July.  I was better-informed about Savella than she was, since it had only been on the market for a couple months. I mentioned that, other than a slight chance to raise blood pressure, it was looking far more promising than the other 2 medications that had been approved.

Oops.

You see, my blood pressure is a tad high. Constant pain can elevate it. Mood can elevate it. When you get pain and mood in a nasty spiral, well, even on blood pressure meds, things get a bit high. So, she decided I needed to take a second dose of my bp meds each day for a month, while she went and did more research on Savella.

Back I went to her office in August, after one rescheduling on the doctor's end, hot on the heels of losing Nutmeg.  Yeah, not a happy blood pressure time.

My bp was even higher than it had been the month before, even with doubling the dosage of my bp meds. Naturally, she was a bit unhappy about this, and said that, while she really liked what her research had turned up on Savella, she didn't want to start me on anything new until my blood pressure was under control.  She started me on a new bp medicine (while continuing to double-dose on the old one) and scheduled another followup for September. She'd also wanted me on a diuretic, but the one she wanted to prescribe had sulfa in it, which is a no-go for me.

September has been a tad busy for me with lots and lots of EQ2 upcoming content to test and write about for my site.  Busy, busy, busy, with my brain trying to leak out my ears due to the sheer volume of it all. Not the best time to try to cut down on my stress so my blood pressure is sane, but I was managing ok.

One hour before my recheck appointment today, the dr's office called and rescheduled ... for the same day next week when the content in EQ2 that has been making me so busy is due to be published to the game servers, and I'm due to be running about in-game verifying last-minute changes and updating the site.

Oh yeah, my blood pressure will be nice and low then.  {sarcasm}

What's next?  Another delay until October while she tries me on some different blood pressure med?  November?

The pain is getting worse as the months pass, which, I suspect, is counterbalancing any good that the bp meds may be doing for me.  I can't see much hope of that changing at this rate.

Meh.