Posted in Anemia on April 26, 2012|
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Epic blood draw this morning. I’ve only had this much taken at once a few times and am still a little loopy. May have figured out the cause of my tummy issues- change in meds and if not better in 10 days it’s to the GI I go. Whee.
I have been asked to act as a consultant for another Uni to help them expand their services similar to the services that my team provides. I’m very flattered and am looking forward to working with some great folks. I’ll have to use two vacation days to be on-site, but they’ll cover my travel and provide a small stipend. I haven’t done consulting since I left my last Uni and it will be a fun challenge. Also looking forward to re-visiting a city I’ve only been to once before (Jacksonville), and, maybe, just a little bit looking forward to not having cats wake me up for one night, heh. I will miss my hubby though- we spent enough years doing long-distance that we miss each other if we can’t spend the night together.
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I’m actually really glad that I have already started looking for a new doctor, because this last visit was fairly insulting. First he tried to call me out on how my stiffness isn’t lasting all day the way I reported six weeks ago. “Uh, that’s because you told me to take the OTC arthritis medication daily and I have been.” Then, I pointed out that my gastro issues are a known side effect of my current meds. And he agreed. WTF!?! I am so mad that I went through a bunch of tests and another prescription for this. If he had said this two months ago, I would have been fine and dealt with it, but right now I’m furious. Then, while we’re discussion this major change in my treatment (yes, I’m starting MTX) he actually starts BACKING OUT THE DOOR to go to the next patient. Seriously! We barely spoke for five minutes! Yes, I know he’s very busy and was behind schedule, but I am done. If I hadn’t already been looking for a new doctor, I sure would be now. What a terrific job of making my health concerns seem completely inconsequential, guy. If you can’t even spare five minutes for a patient then screw it- I’m going somewhere else.
I am incensed and frustrated and unhappy that I have to start this new treatment, even if it is necessary (and, sadly, it really is).
But I’m really glad I never gave this doctor a link to my blog. 😐
Update: still mad. And when I asked about the tremors in my hands, all I got was “that’s not a common side effect”. Well, is it an uncommon one? Is it just from muscle fatigue? Could you at least PRETEND to care or be curious?!
But hey, there’s good news. My anemia is doing fine. Yay.
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So, I’ve had friends and family ask what having autoimmune diseases means for me. Aside from multiple doctors, constant appointments and medical tests, and crazy drugs, what does it really mean on a daily basis? I decided to summarize my answers here, and I may update/change as I articulate things more clearly.
- I have a poor immune system. I get sick easily and stay sick longer than most people, and there are many factors that seriously compromise my resistance to illness (travel, stress, allergies and female concerns all weaken my immune system further). I fortify my immune system using diet, supplements, adequate rest, and when I can, exercise. Good hygiene and avoiding situations where I can contract illness as much as possible (extra precautions when travelling or stressed, for example) have helped a lot. I now only get really sick once every three months for a week or so. This requires me to be vigilant and as consistent as possible in my daily health maintenance, but it is entirely manageable. I cannot have preventative flu shots because they make me terribly sick. Please don’t argue with me about this- I know from experience.
- However, my immune system is a paranoid sociopath, and spends its time attacking parts of my body that mean it no harm. First, apparently my thyroid walked too close to the property line one time too many. Then my immune system started leaving threatening messages and a suspicious paper bag on the doorstep for the tissues around my joints. It is entirely random when my autoimmune system will suddenly kick it up a notch or slink back to the basement for a few days or weeks to mutter and paste newspaper articles all over the walls. Various things can trigger an attack, but rarely consistently. Daily medications help keep it sedated. Cold or prolonged rain make it particularly cranky and likely to lash out. Managing my autoimmune flares is almost entirely reactive.
- The primary side effect of my autoimmune issues is chronic joint pain, which is managed with all of the above plus some heavy-duty muscle relaxants and steroids as needed. Thankfully, I have needed these less lately. I do still have bouts of intense fatigue, which is additionally impacted by fluctuations in my thyroid and anemia. Managing pain and exhaustion is more an art than a science, and is the most frustrating part of this whole situation since what works one time might not help another, and I can do every single thing right and still have a bad flare that lays me out for days. It is capricious at best.
All that being said, and even with the weirdness lately with other issues, I have been feeling much better the last couple of weeks than I have in months. My daily pain levels are low or non-existent, and I haven’t had to take anything for arthritis pain in several days. I am staying up a bit later and being a little more social, and even though I wrap myself in a cocoon of comforters at night I have mostly been sleeping well. My first round of tests for the mystery bug came back refreshingly normal (well, normal for me), so now we’re just waiting on the other labs for confirmation, and the “emergency” meds were tested for the first time last night and seemed to work like a charm, so yay that! I am planning some really cool things, which I’ll post about soon. (Teaser!)
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Posted in Anemia on February 3, 2010|
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Have I used this post title before? I sometimes worry that I’ll get repetitive. Anyway…
Things were over fairly quickly and painlessly yesterday, despite the personal squick factor. I had the same technician who was initially surprised to see me again and then remembered what I had getting done- she was quite sympathetic, which I appreciate, heh. We also chatted about anemia and hair loss- I felt like shaking my finger at her for being in a health profession and not taking anemia seriously, but I’ve had a few more years to be informed.
I went to the salon and had my hair coloured and my cut cleaned up a bit. I love both, but it is much more red than I expected- I really wanted to go more orange-y. Things should lighten up a bit over the next week or two, and if it is still too red by my next trim in 4-6 weeks I may have orange-y highlights put in and see how that works. Yes, I will post a pic as soon as someone helps me take one!
By the time that was done it was raining pretty thoroughly, so I went back home and did not get to pet bunnies or buy cute socks. However, I now have started a new list of things to do to cheer myself up when I’m blue and blah, so that is a fun thing to plan! I was also kind of glad to go home and crash a bit- I find that I really need some mental/emotional downtime after tests and some doctor visits just to get my equilibrium back. It’s hard to have a conversation about all the things that can go wrong and then go into the office and put in a full day.
I made turkey burgers for lunch and we watched “9”. I really liked the short when it was first released and enjoyed the movie, but don’t feel like I missed anything by not seeing it in a big theatre. I spent most of the rest of the day playing computer games and resting, combating a nascent migraine and reorganizing my medical chest when we couldn’t find things and then found them later after buying more. I felt very productive but also a little alarmed by how many miscellaneous bottle of pills I have. Also, my vitamin bottles are enormous (I buy in bulk so it’s a better value) and am now self-conscious after my sister commented on them while visiting. They are lined up on top of the refrigerator so that they’re easily accessible, but now I want to hide them except I’m afraid that I’ll forget to take them. It’s a silly thing to be self-conscious about but there it is. Our friends who come over know I have health issues- they can deal, although the little Martha Stewart voice in my head wants to cover them with doilies or something, heh.
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Posted in Anemia, tagged doctors on December 16, 2009|
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I currently have three doctors: my primary care physician, my endocrinologist, and my rheumatologist. At present I see at least one of these doctors every 2-3 months, so I have plenty of opportunities to compare and contrast.
All three of my doctors require blood tests, and they share results which makes my life a bit easier. However, some doctors do tests in-house while others send me to a lab. There seems to be some friction about these different approaches, since one of my doctors implied that the lab process provides more reliable results. I’m not really sure how to respond to this. I find it somewhat unprofessional to criticise the process used to get test results in front of the patient. All it does is make we worry about the reliability to the many tests I go through on a regular basis. Do they expect me to stop going to doctors who don’t process bloodwork the same way? If they all used the same method would I need to get tests less often?
I joke that I can’t go within 10 yards of a doctor’s office without someone draining a vein, but it’s only half a joke. I have scarring from my earlier bloodwork (I sometimes worry that people will get the wrong idea about what I do in my free time). Baby needles have made my life more comfortable, but between constant tests and anemia I can no longer donate blood- I already “gave at the office”.
It comes back to trusting my doctors. I’m not afraid to seek a second opinion or change a doctor if I’m really unhappy or uncomfortable, and this minor conflict isn’t enough to give up doctors who I know and appreciate. It takes time to get to know a doctor (I usually need at least three or four appointments before I really get a feel for someone) and I know that I’m not always the best patient, so I’m not going to throw over a good doctor/patient relationship.
But it doesn’t stop me from worrying about the accuracy of my tests. My health is already an emotional roller-coaster, and getting improved results one month and worse results the next is aggravating at least, if not downright traumatizing. I already have a hard time factoring in all the elements that affect even one of my conditions, so this sort of uncertainty makes it even harder to get a grip on my progress (or lack thereof).
I think that mainly I need to stop relying on lab results so much and focus more on how I feel. It’s like looking at numbers on the scale- it’s really only a guideline because there are so many factors that can impact results on a given day; it’s not in my best interest to get too hung up on the numbers since things shift from one hour to another, much less day-to-day or week-to-week. This isn’t entirely encouraging, but is somewhat comforting. Does that even make sense?
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Right now, there isn’t a whole lot of it for the usual, obvious reasons, but I’m trying to change that.
After a couple rough weeks and some regression as far as inflammation is concerned, I am reassessing my exercise goals and slowly restarting. Right now, I am doing one hour a week with my trainer doing Qigong for balance and stretching, and light weights to build strength and control. Incredibly, I have started to work with my first kettlebell! It’s only 15 lbs. and the handle is too small for my paws, but it’s more than I ever expected to be working with, so that’s pretty exciting. My trainer is a good friend who recently completed her certification and is focusing on women’s fitness, so this is a learning experience for both of us. The weight training is good for strengthening the muscles around my joints and pain management, and I definitely have more “good days” the weeks when I work out than when I don’t (although that can be hard to remember when I’m exhausted and trying to get on a treadmill). Right now I can only afford one session a week (cost in both money and energy is high) but I always feel better for doing it- I *know* that I’m doing something good for my body.
The other half of my (sparse) exercise regimen is one day of cardio a week. Right now that’s 20+ minutes on the treadmill at 3.5 mph or higher. Not much, I know, but I was walking 5ks last year and and I want to build back up to that. I know that I need to do more, but I also don’t want to try and do everything at once and hurt myself or burn out, so I am focusing on these two areas for now.
I also need to get back on track with what I eat. In the past I have done Weight Watchers and SparkPeople with varying levels of success. While both programs are excellent for different reasons, between food allergies, high cholesterol, anemia and lactose intolerance, there’s more that I need to track than is included in most online tools. I tried The Hackers Diet recently (being a geek by nature and trade) but have to confess that I have fallen off updating my spreadsheets. I will get back to this in the near future, but for now I’m focusing on small steps starting with tracking how many servings of water I have every day on a calendar and my daily weight each morning. Keeping hydrated helps with my inflammation and joint pain, and it’s an easy change to get back into. Once it becomes a habit again then I’ll make further changes.
Ideally I’d like to add a second cardio session and an hour of yoga into my week, plus track food again. It’s amazing how easily a few bad days (or a couple holidays) can derail a maintenance schedule. I still have that early morning hour that looks like it would be great for yoga, but I’m still slowly adjusting to staying awake at that time rather than crawling back into bed. I am sitting on my exercise ball again in the mornings, which is good for my back and provides inadvertant stretching in the morning to help get some of the kinks out. It really makes me realise how much I could be doing and haven’t been- no wonder my weight has gone up.
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And in this case, those “little things” are my vitamins.
I take my vitamins in the middle of the day so they do not counteract the thyroid medication that I take first thing in the morning. I have gotten pretty good about my pill schedule (I take various medications and vitamins four times a day) but every once in a while I forget to refill my pill case. Like this weekend. So I do not have my lunchtime vitamins today.
“How important can some OTC vitamins possibly be?” Well, there’s nothing like not having them to remind me. I take a regular multivitamin, and a calcium+d to help compensate for my lactose intolerance and just generally not getting enough d. (Most doctors recommend extra calcium for women of pretty much all ages.) I take a flax or fish oil caplet to help out my cholesterol, an iron supplement for my anemia, and a b complex which helps with my thyroid dysfunction and general afternoon fatigue. The last two are especially important to my ability to function, and I’m really feeling their lack right now.
I would chalk this up to psychological factors, except it’s happened before when I didn’t realise I had forgotten my vitamins and felt pretty awful; it’s been a bit too regular to just discount. Since I started taking lunchtime vitamins my afternoon fatigue has improved considerably, without resorting to caffeine or sweets to keep me going. Unfortunately, I’m so knackered right now I’m not sure I could even drive home. I’m going to see if I can scrounge a vitamin water to help me get through the end of the day and possible head home early.
And I’ll be sure to fill my pill case.
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