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.

Yet another treatment: Robaxin

March 20, 2010

After going to my doctor a couple weeks ago, because I’d been in a bit of a flare and my back had been bothering me more than usual (I’ve been needing more Vicodin than usual, which isn’t much but is concerning. She focused more on my fibro pain than my back pain, which upset me at first, but I think might be okay now that I know her suggestions.

She decided to think about my situation and then call me and offer some suggestions, so 5 days after my appointment, she did call. She suggested Robaxin, a muscle relaxer that works by depressing the central nervous system. She recommended 750mg at night before bed, and hopes for a 25% decrease in fibromyalgia pain over the next two weeks.

I’ve taken it for 4 nights now, and there seems to be a need for finding the best time to take it (which can be annoying), because right now it looks like I need to take it about 3 hours before bed, to give it time to take effect and to allow me to function in the morning without waiting 3-4 hours for the groggy zombie feeling to wear off.

I will say I’ve been very productive so far (compared to before). It might be a combination of the outstanding weather we’re having, or a new medical marijuana product I’ve found, the Robaxin, or all of the above. I had a great two days off with my husband and friend, and yesterday even walked in the pool for awhile.

Clearly I overdid it yesterday, too much pool walking, and then a walk to the corner market for dinner items. I’m really exhausted and really uncomfortable, but I *do* think I’ve seen an improvement, and even when I’m sitting here in a lot of pain, I’m so thankful for all I did yesterday and over the last few days.

It’s an unusual feeling, having to “settle” for “a little improvement” over “getting my life back.” With fibro pain improving, I’m left with mostly back pain, and between the pain in my back (and even with improve fibro pain), my cloudy brain, and uncontrolled fatigue, I know I won’t be working any time soon, if ever again. It’s weird to me that I have improved symptoms, but they’re not improved enough to get “better.” It’s a weird feeling to have to lower one’s standards or expectations about reasonable treatment.

However, if this is going to be a long-term thing, I could probably get used to the Robaxin. That time in the pool yesterday was just heavenly.

fibro fog

March 15, 2010

One of the most annoying symptoms of fibromyalgia has been the “fibro fog” or “brain fog” that (I feel) is getting worse as time passes. Common symptoms of fibro fog include:

* short term memory loss
* difficulty remembering where you left something
* difficulty remembering plans
* difficulty with language, including trouble holding conversations, understanding conversations, and expressing thoughts
* difficulty finding the “right” word (written or spoken)
* trouble remembering simple numbers (addresses, home phone number, PINs, etc)
* difficulty following directions, instructions, and maps
* transposing or reversing letters and numbers
* trouble concentrating and focusing (particularly when it comes to multitasking)
* trouble retaining new information
* trouble recalling old information

I’m frustrated with this more than I’m frustrated by the physical symptoms, because I used to be proud of my ability to articulate and communicate, as well as my ability to multitask and utilize forethought. The written word is easier to manage, since I can spend as much time as I need to on a post, and go back to edit; however, conversations take on a whole new meaning, since I mix up words and can’t get words out, sometimes.

I can’t even imagine how annoying it must be to have a conversation with me where I’m asking you to “hand me that thing over there next to the other thing so I can do this thing with it.” I remember being irritated with my mom in the past when she’d say similar things. I can’t help but wonder if she had fibro fog while I was growing up (she often talks about aches and pains and poor sleep), but I always blamed it on her night shift work and poor communication skills. My poor mum.

Fibro fog has affected several of my favorite activities, from cooking and baking (because I lack the forethought to adapt recipes to make them my own, or create a new dish, and I often leave out or make mistakes with ingredients and steps when I try to follow a recipe to the letter), to writing (I get distracted quickly, after 200 words or so, and lose my train of thought when I try to leave myself notes and come back to the project), to crafts (I keep starting projects and forgetting them when I start something new: so far it’s been sewing and knitting I’m saddest about), to visiting new areas and trying new places (I can’t keep the places straight, and when I try to maintain a running list of “things I’d like to do,” I lose the list, even when it’s electronic). I really love playing Words With Friends on my iPhone (it’s like Scrabble), but I’m really not any good at high point words, or complex words. I figure it’s good brain exercise to play at all, and it’s fun (even when I’m getting my butt kicked), so I’ll just pretend like my brain isn’t turning to swiss cheese).

Fibro fog also affects important activities of daily living, like when it comes to remembering medication (I’ve forgotten I’ve already taken my Advair and take a second dose sometimes) and vitamins (time passes quickly, so I lose track of it), or I forget I’ve already put deodorant on and put it on a second (or third) time, or brush my teeth a second time.

Fibro fog is also why I haven’t posted much lately. I keep forgetting. Even when I have a great post idea, I’ll send myself an email or make a sticky note as a reminder, and then it gets buried under other emails or sticky notes, and then eventually I get overwhelmed and trash all the unanswered emails or sticky notes, and trash them all and start fresh. Rinse, lather, repeat.

The newest Really Annoying Habit I’ve got is that I get upset because I can’t find something that I *know* is nearby, I look all over a small area for it (like the coffee table or in the refrigerator) over and over again, and finally ask someone, exasperated, where the lost item is, only to find out it’s literally directly in front of me, next to or on top of something I distinctly remember seeing and acknowledging, but I swear that remote control was NOT THERE when I was looking furiously for it a second ago. My husband (and friend living with us) are extraordinarily patient, since they haven’t said a word about this Really Annoying Habit. Aren’t they wonderful? I’m so lucky. :)

medical marijuana

February 21, 2010

I have been wanting to write about this for awhile now, but I’ve been not-as-great-as-I’d-like-to-be with updating this site. I’ve been really tired, and in more pain than I’d like, so I’ve been focusing my energies elsewhere. Other than, you know, being too sick, things are good. I love California, and my husband loves his job (and California). We have a friend staying with us, and that’s been fun (and where my energy goes instead of the internet).

When I first arrived here, I sought out a medical marijuana card. I’d heard about the benefits of medical cannabis with chronic pain (fibromyalgia and spinal cord damage), and wanted to try it, since I wasn’t having any luck controlling my pain with Flexeril (I had relief for a short while, but it stopped). I was also nervous taking Vicodin regularly for my back. I’ll talk a little about the process, in case you’re curious, and then about how it’s helping me.

I called MediCann, and set up an appointment. I brought identifying documentation and recent medical records to a very nice doctor, who was more respectful and kind to me in half an hour than I experienced with my previous GP in nearly 3 years with him. It was mind-boggling. We talked about all my conditions and symptoms, and he reassured me that patients like me have a lot of luck with cannabis. He even offered suggestions for finding a regular GP (it was easier for me to get in to a MediCann doctor than it was to find a GP, although the GP I found is just amazing).

I was given paperwork that was effective immediately. After looking up dispensaries, I found one nearby, and checked it out. The dispensary staff were kinder than the staff of most pharmacies I’ve visited. (I can honestly say the California medical cannabis community is made up of some really kind and caring people!) They helped me pick out medicine, and the whole experience was rather surreal.

Later, at home… relief. Not perfection, by any standard, but such a huge amount of relief. The knife-like pains (or cramping burning pain, or however fibro is behaving that day) relax and melt away, not completely, but pretty far. The tingling pins and needles quieted down. Best of all, the only side effects might be the urge to cook dinner an hour early (oh, yeah, and I can cook dinner with less pain and more energy for after dinner!), or possibly a nap. Nothing long-term, and nothing damaging. And of course, my mood improves. I can’t really feel guilty about the resulting euphoria, considering how sad and upsetting it can be living with chronic pain.

Also, I sleep very well when I medicate, which has its own benefits for symptoms of fibromyalgia.

Cannabis may not be the best option for all fibromyalgia patients, and only you and your doctor can determine if you should try, only in areas where it’s legal, but for me, it’s really made a world of difference. I’m more productive because I’m in less pain, and while I’m still unable to work, I can take better care of myself, my family, and our home.

Disclaimer: I truly believe that cannabis should be legal everywhere, at the very least for medical reasons, but ideally for everyone. Used recreationally, it’s no different than an after-work cocktail, and alcohol is legal for adults to use and abuse as they wish. Used medicinally, it’s safer than plenty of over-the-counter treatments, and much safer than prescription drugs. No one’s died from overuse of cannabis. This site is a great recap of the history of marijuana prohibition, and is a good read if you’re interested in the history of marijuana, or cannabis. Also, NORML has a good overview and introduction to the medical use of cannabis.

Gosh its been months

January 18, 2010

I have thought about this blog a lot! I don’t have a good excuse for not writing. I still have fibro. I’m still fat. I still have a short fuse when it comes to tolerating stupid.

Anemia: I’m still anemic. When I went to the hematologist last, the idea was that after 6 iron treatments, I’d give my veins a rest for a month (still have phlebitis in my left hand, it’s still periodically very painful), come back for a retest, and resume treatments. However, my hematologist could not find my chart, and my instant CBC results were normal (the info that takes 24 hrs to generate is more useful in my case though), so she said I was fine and she didn’t need to see me any more. She clearly dismissed everything I’d been through, and didn’t remember anything about me (understandable without my chart), and made up numerical data regarding my previous visits. What a waste of a copayment.

I’m secretly glad not to be getting weekly iv’s however. I’ll ask my gp to run the numbers again at some point. I can’t imagine I won’t need more iron in the future.

I saw an endocrinologist about possible PCOS, and the bloodwork was negative twice, so my periods are irregular for no good (and no measurable) reason. Another wasted copayment. I’ll just hope I see menopause soon :)

I’ve had some new pains that seem more like fibro tender points and I’m betting that’s exactly what they are. Just above the outside of the ankle. The middle of the outside of the lower leg. Outside of the thighs. Forearms, biceps, fingers and hands.

I went to the doctor about my hand pain, just to document it, and when I told her this reasoning, she stopped and said many of her patients say this and she thinks it’s because they haven’t been believed in the past, and were not treated properly to boot. I almost burst into tears right then and there. It’s true: when I have to tell a doctor to write something down, it’s clearly because I’m not respected as a person. We decided my hands weren’t arthritic (no more than usual for having a few broken fingers growing up), but it was likely a new tender point (fibro friends note: this is unusual, in the hands, but not uncommon! Speak up to your docs if you notice this), and we’d image it if it changed or worsened.

My husband got me an electric throw blanket, and it might be the greatest invention ever. I highly recommend it if you have temperature regulation problems! The throws are cheaper than full sized blankets and run about $40 or so.

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.)

How are YOU?

October 12, 2009

I spend too much time on Twitter, probably, because it seems weird that I could get to know so many people in 140-character increments. But it’s turned out to be a good resource for news and networking for a lot of things, including fibromyalgia and other invisible illnesses and disabilities.

A frustration I deal with as a sick person is how to respond to the question, “How are you?” After all, it can be a loaded question to a person with a chronic illness, and for the most part the question isn’t meant to be answered with anything other than, “good, and you?” One of my favorite tweeters, @LilPecan, (who, to my knowledge, does not identify as a person with a disability) has mentioned how annoying it is to be asked the question, “How are you?” and I have to agree. It makes me giggle to hear that LilPecan and friends will greet each other with, “Good, and you?” beating the “how are you?” question to the punch.

But this does make a point. Even people who aren’t sick think this question is silly. As a sick person, I really don’t know how to answer it. When it’s asked by another chronic sickie or someone who understands what I’m going through, I’ll usually be honest (“I’m ouchy and tired, but had a great weekend, thanks for asking!”), but when it’s asked by someone who doesn’t fit either of those categories, I usually just say, “Okay. How are you?” I suppose it’s deceptive, but I really don’t think acquaintances are that interested in which body parts hurt worst on a given day, or how I just want to sleep for a week from fatigue (not depression, which is a common assumption), or how I really shouldn’t have done that extra load of laundry today.

It can also be kind of disheartening, because it’s a bit of a reminder, albeit a tiny one, that I’m always going to feel like shit, at least to some degree, and I’m never going to BE “good.” I might feel good emotionally, or I might have a good day physically, but I don’t think I’ll actually BE “good.” Or “fine.” Or “Great! Thanks for asking!”

Does anyone remember that George Carlin skit about being asked “how are you?” I can’t seem to find it anywhere, though. I’m a bad blogger.

I understand why people ask this and make small talk, but I’d still like to challenge us all to find a better way to open up discussions. Asking how I am conjures up thoughts of my health and my abilities, and while I will talk about those things if you’re genuinely interested, I’m smart enough to know that you *really* don’t want to hear the details of my boring fibro-filled life when you ask how I am. I’m okay with that. You don’t have to hear the gory details, and if I were you, I probably wouldn’t want to hear all the gory details myself. This shit ain’t fun. So perhaps you could ask me, or any chronically ill person in your life, “What’s new?” And if you’re actually interested in how we’re feeling, you could ask, “How are you feeling?”

If I do get asked “How are you?” which I do, because I have polite friends, I don’t get upset. But I do get tripped up, because I’m not sure if they’re asking to be nice, to start conversation, or because they actually want to know how I’m feeling that day. We can blame “fibro fog” for that confusion, I’m okay with that. But if you’d just be a little more specific, I sure would appreciate it, so I don’t talk your ear off when you just wanted to know if I enjoyed my breakfast. ;)

Want to participate in a research study?

October 3, 2009

You might be interested in participating in a research study about fibromyalgia. An online program is being studied/created to help fibro patients examine their fibro and their lives and potentially identify ways you personally can manage your fibro. It’s free, confidential (and anonymous, if you use a dedicated anonymous email address). It requires a little bit of your time, but that’s to be expected. It doesn’t require you to be a guinea pig for experimental drugs, or even to talk to anyone, but it does involve providing information about your health.

http://www.fmwellness.org/index.htm

From the website:

The Fibromyalgia Wellness Project, a research study sponsored by the National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS), National Institutes of Health. This project is conducted by Collinge and Associates, an independent research organization directed by William Collinge, PhD. The project is now inviting participation by people living with fibromyalgia.

Project Description:

Fibromyalgia (FM) is a long-term chronic illness that touches millions of lives. While there is presently no medical cure, different approaches to treatment and symptom management help reduce symptoms to different degrees in different people. One way the person with FM may be able to have significant impact is through the careful management of lifestyle and behavior factors that affect symptom levels. However, since each person is unique, management of FM needs to be highly individualized.

Because there are so many options and influences to consider, one challenge people with FM face is discovering what strategies work best for them. The purpose of the FM Wellness Project is to evaluate a completely individualized approach to symptom reduction. The goal is to empower users with uniquely personal insights into what strategies work best for them over time.

still truckin’

October 2, 2009

I was going to post a general update, but before I get to that, I just wanted to give a little shout out to the only comment about this site via stumbleupon.

from: Plank2x4 reviewed 7 months ago
Give it time, Vicodin is still a narcotic, and now she is taking it on a regular basis… Watch the show House… she will be like him in two months! Great story! (source)

Up until about 97 seconds ago, I thought that it was good that “House” educated people about unusual medical issues. “House” has even been known to mention fibromyalgia as a legitimate disorder (even if it’s always ruled out, since fibromyalgia is pretty anti-climactic in show biz), which I appreciate, along with other little understood autoimmune disorders. However, this guy, a complete stranger, just accused me of being a junkie because of a character on a television show.

And here I am, discovering this 7-month-old comment, and I’m NOT A FUCKING JUNKIE. Unfortunately, I’m *also* not a brilliant doctor with impeccable analytical and reasoning skills, but I guess I shouldn’t be surprised. Because it’s fucking television.

So, in case you’re wondering, plank2x4 (although I doubt you are), I’m still taking Vicodin, and I’m still not addicted. I do take it daily in the morning, when my back pain is the worst, and on rare occasions (about once a week) I’ll take a second or third dose that day. One pill (that’s a dose of 5mg hydrocodone) once a day hardly makes one a junkie. This has been my routine since I started taking the Vicodin, and I can count the number of back pain flareups requiring a second day of extra dosing on one hand. (Once was the weekend we walked all over Chicago. Then when we walked all over San Francisco the week we came out to find a place to live. And then the week of my bone marrow biopsy, which kept me in bed for a good week or more.)

It’s people like plank2x4 the government is addressing when they use fearmongering to scare the pants off citizens about things like over the counter pseudoephedrine, even when you have terrible allergies, and prescription opiates, even when your pain is so severe you can’t pull your pants down to go to the bathroom, carry a bottle of laundry detergent, or bend over to empty the dishwasher. (That’s me, by the way, without my morning Vicodin dose, in case you didn’t figure it out.)

So, now that my feathers are all ruffled, and you know I’m not a junkie, I’ll tell you how the bone marrow biopsy turned out.

My iron stores are low. That’s the iron that’s supposed to be in my bone marrow, but isn’t. Apparently, my serum iron levels are borderline normal, but it’s still possible to have nearly nonexistent iron in the marrow, and when that happens, things start working overtime, and the bone marrow starts pumping out whatever it can think of to take the place of the missing iron, and that resulted in too many white blood cells and platelets. The treatment is effective and relatively simple: I need to get 6 weekly infusions (by IV) of ferrous gluconate (iron). The hematologist will recheck my blood during the course of this and at the end, and then decide if anything else needs to be done, besides eating iron-rich food and taking some iron supplements (while I am vegan, and this is actually not difficult to do in a vegan way). Hopefully she didn’t mean “recheck” with a second bone marrow biopsy, because there’s a high probability that I would flat out refuse another biopsy, especially without sedation.

I had my second infusion this week, and it’s going fairly well. After the first one, the very next day I went grocery shopping for the first time by myself in over a year. This is unheard of! I had mental clarity, and a little energy. By the end of the week, I was pretty tired, but that was the fibro talking from doing more than I was used to all week. I was still mentally alert! I still am now, actually. After the second infusion, I didn’t get much more energy, and I developed phlebitis at the IV site. They used the same site for both infusions, but this week the nurse used too large of a needle (they usually need to use the smallest), and banged me up pretty good (hurt like hell going in). It was rough. I had to go back to the treatment center just so they could check on it, and they said it should improve, but no more using that site for awhile. Since I don’t have any other less difficult spots, I’m kind of dreading my infusion on Monday. I’m not sure where they’ll stick me. :(

It’s pretty nice to have some of my brain back, though. I was really feeling… dumber. I still do stupid stuff (like forget to turn on the oven when cooking, or the coffee pot when making my husband coffee in the morning), but that’s more like “fibro fog” and less like my brain cells are wasting away, which I was starting to worry about. But apparently it was low-iron-fog instead. ;)

Anyhow, so currently my only (new) complaints are a near-constant stomach ache, probably from the massive doses of iron, and the phlebitis in my left hand. My hand is improving, and hopefully my stomach will either adjust, or return to normal when all these infusions are done.

I know a lot of “fibro bloggers” give lots of advice, but for now I’m just documenting this whole process, and my new found adequate healthcare. Honestly, what works for me might not work for you, and vice versa. Next time, I’ll talk about what’s working for me and my fibromyalgia.

I’m creeping a little too close to the 1000 word mark, so I think it’s time to wrap this up. Thank you for reading about one fat girl’s fibro journey. :)


Follow

Get every new post delivered to your Inbox.