Archive for the ‘Uncategorized’ Category

Should I blog again?

April 24, 2011

Its been over a year since I posted last… I can’t decide if blogging is worth the loss of privacy, or if it’s worthwhile to share my thoughts with others.

The overall lack of quality healthcare in this country has resulted in post-traumatic stress disorder (PTSD). I have a lot of anxiety. My doctor is being wonderful.

Fibro has impacted my life in many ways. It has changed me forever, for better and for worse.

I’m not sure what to do next.

Still Anemic

October 27, 2009

Venofer, intravenous iron.

I had my sixth iron infusion yesterday. That brings the total of intravenous iron up to 1100 mg, in the form of iron sucrose. I’ve been eating lots of leafy greens, black beans, and walnuts (along with anything else that boasts a high iron content, like molasses). And my iron levels still haven’t come up. Well, to be fair, they’ve increased a bit, but not enough to excuse me from future iron infusions. My hematologist would like me to try four more treatments, but because my veins are shot to hell right now, we’re going to take a month off. I’ll go back on December 7 for an iron re-check and a visit with the doctor, and then we’ll come up with the next phase of the plan.

In the meantime, I have a new supplement to try (Salus Floravit) that’s vegan and packed full of iron, and hopefully won’t bother my stomach, either.

On Sunday, my brothers-in-law invited my husband and me sailing. I’d never been sailing before, so this was a real treat. We went out into San Francisco bay, under the Golden Gate Bridge, and into the ocean. It was wonderful. Perfect weather, great company, and I LOVE the ocean. I can’t get over how amazing it was. I have some great pictures and great memories!

View of the Golden Gate Bridge from below in a sailboat.

Of course, no good day goes unpunished, and I spent yesterday and today recovering. Yesterday was particularly painful and exhausting, and while today has improved, I’m still not up to speed, and my stomach (fibro-related IBS) is very unhappy. But I have amazing memories so it was well worth it!

Speaking of stomachs, I also saw my general doctor recently because I’ve been having new and different back pain, and lots of nausea and stomach pain. My back was xrayed (mild scoliosis and disc narrowing, so not a real explanation for my pain), and I had a Celiac test done (no results yet). She also suggested taking Prilosec OTC for 2 weeks straight (I’d only been taking it when my GERD was flaring), probiotics, and small frequent meals. The probiotics seem to be helping a bit, although I still get nauseous every time I eat. I so rarely throw up that I can ignore the nausea. It’s probably just fibro and motility problems. (That’s my guess. My doctor is great and is smart about not dismissing everything as fibro until other explanations are ruled out.)

So it’s a low-key week for me. I certainly miss the days of being Super Productive Girl, but on the other hand, a nap on the couch sure does sound like it could cure the world’s ills….

a thoughtless comment

October 20, 2009

I’m late to the party here (blame fibro), but a week or so ago, a radio DJ on twitter made a VERY inappropriate comment about people with fibromyalgia. He said they should be shot. Actually he said people who “claim to have fibromyalgia” should be shot, so take that as you will.

Perpetual Spiral has a good post covering the topic better than I ever could.

I’m just blogging this because I want to remember two things. The first is that even though fibromyalgia is REAL, there’s still a very long way to go to get people to understand that joking about it is insensitive. The second is that one should never underestimate the power of a small group of oppressed people. Twitter was abuzz with replies to @daveryankdwb about his insensitive and ableist comment, including a few disheartening exchanges between angry listeners (providing thoughtful comments and feedback) and an indignant @daveryankdwb. Many of the emails and @replies were also forwarded to @clearchannel, which owns the radio station where @daveryankdwb works.

I don’t know what happened, but after the holiday weekend, I saw that Dave Ryan apologized for his insensitive comment. (Twitter links referencing the apology here, here, here, and finally, here.)

things are improving

March 28, 2009

I haven’t posted in awhile because things aren’t too bad! An update is in order, though.

I’ve been on vicodin for my back for about a month. I’ve been able to walk around with less problems, and I can even lift some of the totes and boxes we’ve been packing. I’ve got to be careful, but it’s nice to feel a little more useful around the house. It’s amazing exactly how much pain I’ve been in. I still have weakness and numbness in my legs, which is annoying, but the decreased pain makes it easier to ignore the numbness.

With my back pain lessened, I now know the full extent of my fibro pain. Which is ridiculously annoying. The pain is kind of maddening, really… it’s like needing to stretch but being unable to stretch out the knots no matter how much I bend and contort. It’s also interesting that the narcotics aren’t touching the fibro pain. What an odd pain it is, that it can’t be touched by strong pain killers!

At night I’m taking Flexeril, and that seems to relax my shoulders (the most annoying part of fibro for me, I’ve discovered!) to make it easier to sleep. I know it doesn’t work for everyone, but if you haven’t tried it, and it’s hard to sleep because of the fibro pain and tightness, I highly recommend giving it a shot. Some nights it doesn’t help, but more often than not, it does. I can feel the stiffness melting away slightly, and that’s about the point when I fall asleep.

I wake up with tons of back pain and I can hardly stagger down the stairs to the couch, where I pop my first vicodin of the day and check my email and putter around online while it kicks in. It takes about an hour before I can move for real. I sometimes need a second vicodin 8 hours later, depending on what we’re doing. If things are *really* bad, I’ll take a third before bed, but I’ve only had to do that a couple times.

I had a followup with my doctor a couple days ago to talk about the progress. He was glad to hear it! He refilled my scripts and we talked a bit more about how I’m feeling. He wasn’t surprised to hear I’m still tired and still having fibro pain, but was glad I’m walking around more and less glued to the couch.

Even though things are improving, we’ve still decided that going back to work is not a viable option for me. I’ll talk more about disability next time.

more of the same.

February 22, 2009

Just a short update. I still haven’t gone back to my GP to request the rheumatologist’s suggestion of Lyrica and Cymbalta. The more I think about it, the less interested I am in taking a drug for depression that could affect my brain chemistry (because I’ve had problems with SSRIs in the past, even though this isn’t an SSRI), and Lyrica is known for weight gain. Perhaps if my doctor could promise to refrain from giving me shit if I gained weight from taking it, but I’m not sure that is physically possible.

I’m still learning limits and on days when I’m not hurting, I’m usually exhausted, so I sit around frustrated at all the things I’d like to do but lack the energy to do. Frustrating isn’t even an adequate word to describe how I feel.

I’m planning on making a doctor’s appointment this week so he can document in my medical record that I quit a part time job for health reasons. I’m thinking about applying for disability, too. I’m dreading seeing the doctor again, for various reasons, not the least of which being I don’t feel like he takes me seriously.

And another fibro update: I know I’ve had more stomach problems the longer I experience fibro symptoms. I don’t know if it’s outright IBS or not, but it sure seems like it. I’m normally a healthy vegan eater, with lots of protein, good carbs, fiber and veggies. But a friend gave me some M&Ms candies two days ago and I had a small handful. Then later I had a pina colada with whipped cream on top (okay I had two of them), and I figured since I was already hurting, what could a little more damage do?

A LOT. OMG, I was MISERABLE. Stomach pain, trips to the toilet, repeat repeat repeat. It was terrible. Another lesson learned: NO DAIRY.