Entries by Christy Bell

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.

I didn't post when the imuran turned out to be a failure, and she changed me over to leflunomide. I knew in my head that this would be a drawn-out-process of trying various things until one worked, but it was still a hit to the heart when it happened.

One of the more upsetting/frustrating parts is having to wait a month or two after a new medication is tried before you know whether the horrid side effects are worth it or not. That moment when you realize your pain in hands and feet has been ramping up steadily, with no relief in sight is extremely disheartening. The knowledge that it might be a month or two before you see relief, as the rheumatologist is consulted, the new med is started, the old med trickles out and the new one steps up to the plate (or not) is extremely disheartening.

I'm not saying this in a bid for pity. It is "just" a fact of life for me. It is more so folks can understand. There's still a lot of stigma attached to chronic illnesses, and every drop of education I can help to pass on that grants some small amount of empathy to others suffering from similar (or worse) conditions is a "win" in my book.

Anywayyyyyy ... the leflunomide turned out to be a worse dud than the imuran. My RA symptoms are worse a month into the med, my liver enzymes are climbing again, and the side-effects are actually worse on me than the methotrexate was. Blarg.

The decision was reached today, after my blood work showed the increased liver enzymes, to put me back on the methotrexate. I dislike needles, and the hair loss is heartbreaking, but it is currently the best of a bad bunch. When I go back to see her in a month, we may need to evaluate the Enbrel as well, and see if that will need changing.

I'm going to have to go on a hunt for wigs soon.

My liver enzyme numbers were happy (a welcome change), so my rheumatologist is pulling me off the methotrexate and putting me on azathioprine ("Imuran") instead. (I will continue on the Enbrel as well.) I am still reading up on it, but the hope is that I'll have less side effects with it. We shall see! I'm crossing my fingers, toes and eyes that it helps!

Yes, the hair loss is continuing, despite the extra biotin, etc. I bit the bullet the day after my 51st birthday and had it cut to just barely below my shoulders. That's the shortest it has been in over 30 years, and I still can't get used to it, even after having it for over 3 weeks now. It is easier to care for, yes, but I just ... don't like it. It also makes the grey far, far more noticeable, as most of the red that was remaining in my hair was in what was chopped off. I cannot color it to hide the grey, either, as any haircolor process is going to be rough enough on my scalp to speed up the hairloss even more. Oh well, it is what it is. Better my vanity than my mobility, but that doesn't stop me from being sad about it.

Meanwhile, on the good news front, Adam finished the last class for his degree last month, and was notified yesterday that the degree conferral was official! I'm so proud of him! It wasn't easy going back to school later in life, while also working a fulltime job, but he not only persevered, but he did so with flying colors!

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.

Today marks Adam's first day back as a permanent employee once again, instead of as a contractor. (Well, as permanent as anything is in the video game industry!) It is even back on his old team!

I'm exceedingly happy for him. A solid job that he loves with a company that he enjoys - and now with proper benefits, instead of the uncertainty of contract work.

I'm also, selfishly, happy for me. Fear of what was going to happen to our (Affordable Care Act) insurance has been stressing me quite a bit. After all, I have multiple chronic pre-existing conditions, I am on some very expensive medications that have no cheaper alternatives, I'm 50, and I've had cancer in the past. It wasn't going to be pretty and it has had me in tears more times than I can count.

Yes, I'm still stressed at the state of our country, and VERY worried for many friends of mine, but at least there's one less stress on the pile, and for that I am grateful.

Our 6-year drought is not officially over ... yet. However, there was considerable lessening of the dry conditions as not one, but three tropical storms hit us last week in rapid succession.

Ugh. Ow.

Please don't get me wrong. We desperately need the rain, and more of it. (The groundwater levels apparently didn't rise at all, as parched earth and plants eventually slurped it all in.) We just need it a bit more gently and gradually, instead of having flash flood warnings several days in a row, and great fears of mudslides in areas with wildfire burns.

Our place was fine, with only a tiny bit of standing water in a few spots (see below for my cacti trying to do the backstroke). Others were not so lucky with roads closed due to flooding, livestock threatened, homes threatened and/or destroyed, etc.

My personal "ugh" comes from the fact that barometric pressure changes impact my fibromyalgia, especially as I am finally coming off the frissen frassen steroids at last. It was unfun. Very, very unfun. My body still hasn't settled down, and I am praying it does soon.

There are 4 major in-game events in EQ2 between now and April that I will need to test and report on, and I need all the spoons I can get. Hopefully I can hibernate this weekend with slightly lowered pain levels, since we're supposed to have sunshine through the weekend, at least. {fingers crossed}

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!

Yep, it is Monday with a vengeance all right!

Remember that lab work for last week? The one that would tell if I definitely had thyroid regrowing and would need surgery or not? Well, the 48 hours for the outside lab came and went last Thursday. Friday came and went as well. This afternoon, finally, the outside lab called the doctor's office, and said the blood sample that my lab forwarded them was no good. /headdesk.

So, the nurse tells me that I need to have the blood drawn again, and that the lab order has been submitted. Only, the lab 1 floor up from the office that I see that doctor in (poor guy bounces between 3 offices in the county) didn't have the order in the computer yet. A half hour of phone tag ensued on the part of a very helpful lab assistant before she finally reached someone able to help sort it out for me. That was beyond sweet of her, given my growing stress levels due to not knowing on the surgery-thing for extra days. Then it took another half-hour or more of waiting before the lab could get me in for the blood draw. Normal waiting time for that lab is usually 5-10 minutes, max. Silly me forgot that it was Columbus Day, though, and lots of folks are apparently getting errands done that they normally can't do on a weekday, including blood work.

The only good news is that the dr's office also said they'd make sure there was a credit issued to my bill for the botched lab work, since it wasn't my fault. A small silver lining, but a silver lining nonetheless.

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.