Archive for the ‘Hypothyroidism’ Category

…but Jenni’s ChronicBabe community has gotten me through some tough times over the years, so I’m thrilled to support this project! If you’d like to chip in, please read below:

hi friend! i hope you’re having a great day.

i hope you’re familiar with my passion project: chronicbabe.com. it grew out of my own experience of learning to craft an exceptional life in spite of illness. (it’s part of why i went into business for myself 13 years ago.)
this month, i’m running a kickstarter for my chronicbabe 101 book, a project that will put valuable lessons in the hands of thousands of folks. with 24 hours left, we are fully funded and made all our stretch goals, which means i will give a digital copy of the book to EVERY backer, regardless of their pledge amount – as low as $1. (a big portion of my audience is unable to work, so this is a big deal for them.) the book will be published in july.
here’s a quick link to the page – packed with details: http://kck.st/1MREwha (it ends friday, march 27 at 10:30am central time.)
in these final hours of the project, i’m hoping to create a big swell of support that ensures tons of people who could benefit get the chance to participate – and i could really use your help. i teach my chronicbabes to ask for help when they need it, so today i’m walking the talk once again: please consider spending five minutes in the next two days doing one of these things. it will make a meaningful impact:
– make a pledge to the project (even $1 helps!)
– post a link to the project on your facebook profile or page, with a sentence about why it’s important to you
– tweet a link to the project
– post a link to the project on your linkedin page
– email someone you think might be interested
– posting a link at a forum you frequent
– tell someone you know face-to-face (weird, i know!) about the project
thank you so much! your support means the world. and as always – if i can be of any assistance to you, please say the word.

Be AWAP (As Well As Possible) – Jenni

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It has been a long, long time since I posted. The last six months have been mostly focused on work at my job- we had a couple major projects back-to-back but we’re finally out from under those. My health has had some ups and downs along the way, but overall I’ve been doing relatively well. I started writing short fiction again, and that’s where most of my writing energy has gone; it’s a lot of fun, and more rewarding than I expected.

After a false start I finally transferred to the endocrinologist at the same practice that houses my rheumatologist. This is a huge relief; it’s much closer and more convenient to my job, I can take a shuttle on days when I can’t drive, and it is much easier to share labs and communication between my doctors. I have a round of bloodwork and a fresh sonogram of my thyroid scheduled, but since I’m stable she’s not inclined to change my dosage or brand, for which I am extremely grateful.

Interestingly enough she didn’t bring up my weight- I did. My last doctor was insistent that I lose weight but didn’t provide any guidance. I tried a few things but nothing stuck for long. My new doc suggested I count carbs for a while and see how that works for me. A good friend has done well with this approach and hubby has cut back on carbs as well with some success.

I’m not making any big changes right now- just watching my portions and tracking again, but after four days I feel less bloated and my energy is up, so I have hopes. I’ve decided to not weigh myself until my next doctor appointment in six weeks and just focus on eating better, especially over the holidays.

I still use the treadmill but we’ve been doing a lot of yardwork lately and I’m trying not to overdo things. We’ve started house-hunting again and have looked at a few promising places; we’d really like a house with a pool and that will give me more exercise options.

We’ve had a few cold days, but other than stiffness my joints aren’t doing too bad. What has been more of a problem is that my office is chilly (it’s poorly insulated) so I have to run my space heater and get up to walk around often and stretch so I don’t stiffen up too much; this helps minimize my pain at work.

I am hosting Christmas dinner this year and might order a cooked turkey; the end of the year happened in a rush and I just finished gift shopping last night. I have one item to make but otherwise all I need to do is wrap and mail. Hubby has tomorrow off and will assemble the tree so I can decorate it, and I need to start getting the house in order for guests. My cards will probably go out post-holiday this year, and it may just be close friends/family instead of my whole list, but I’ll make sure that anyone who sends a card gets one in return. It’s not what I’d prefer, but I’m trying to spend my spoons wisely.

I hope that you are all doing as well as possible and looking forward to holiday, and you have my best wishes for the new year and every year!

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Well, I am finally parting ways with my endocrinologist, and am too much of a wuss to tell her yet. I have had constant scheduling issues with her office. It is not far away, but I can only get appointments in the middle of the day which takes a chunk out of my work day. Plus, parking at my job is a real nightmare, so I lose even more time finding a spot when I come back. Once in a while I can just work from home the rest of the day, but that’s not a well I can draw from too often.

A month or so back I had an appointment. I woke up sick that day and had to reschedule (which was a hefty fee, but I was too sick to drive). I rescheduled, and a few days later they called my cell phone at work- a spot had opened up and could I come in the next day? I might have taken it, except that I don’t get cell reception in my office, so by the time I got the message they were already closed for the day. Then I noticed that they called after they closed anyway, so unless I had picked up the phone that minute, I had no way to confirm. I have asked before that they use my work number and they have “updated” my records at least twice, but obviously it doesn’t stick. The next day I was swamped in the morning and missed the window to take the timeslot. Oh well- I still had the appointment I had already rescheduled.

Skip to yesterday. I get a call on my cellphone YET AGAIN. Luckily, I walked into my office just as it rang (it was one of those rare instances when I actually had one bar). The reception was terrible, but it turned out that there had been a mis-schedule- the doctor would be out Tuesday and could I come in today? Normally I would say no, but it was a fairly quiet Monday and I was done with my meetings for the day. My supervisor okayed it and I jetted out the door after scarfing down a hurried (and less then healthy) lunch.

Only to get to the office and find the door locked since they were at lunch. Until one. And they had scheduled my appointment for 12:45. And they don’t take calls during lunch.

At this point I was seething. This guaranteed I would be out longer than I expected already, it was raining, and I had a broken zipper on my slacks. It was a winning day.

So I used my time constructively and called the medical centre where my rheumatologist is located. Do they have a endo on staff? Is she taking new patients? Would I like to make an appointment? You bet! Since the centre to associated with my Uni, not only is it *very* near to where I work, but I could take a shuttle instead of losing my parking spot, and would lose less of the work day.

Just as I wrapped up my call they opened the door, and I proceeded to wait behind all the other people who also had to be rescheduled. At this point it was over an hour after my rescheduled time. Then, I finally saw the doctor- for a whopping five minutes.

It is all so frustrating. I really like this endo. She has been frank with me regarding my health and treatment in ways that I appreciate. Without her we would not have been able to stabilize my thyroid levels for going on seven (?!?!) years now. But the inconvenience is too much, and having all my specialists under one roof will make the constant shuffle of lab work between my doctors so much easier (which is another ongoing saga that I have related here, before). So I didn’t have the heart to tell her- even made my next appointment and everything.

But deep down, I am SO relieved that I will not have to deal with her scheduling office ever again!

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Well, I gave myself a nice, long hiatus from the blog but I think it’s time to dust off my writing chops and give everyone an update. I am making some minor-leading-up-to-hopefully-major changes and need to get back to tracking them (and how I feel about them).

First off, I have consolidated some of my vitamins and supplements, which is nice since it means fewer pills each day (although the ones I do take seem to just keep getting bigger!). I also started tapering off my anxiety medication today, which, of course, is a source of anxiety in and of itself. I am a little leery about tapering at a time when I’m making lots of changes which I am nervous about, even though I know that it’s better for me in the long run. I am considering starting to see a therapist regularly again, and if so it will be someone new, I think.

My weight is pretty much horrible. After breaking my foot (twice) I just didn’t get back into exercising regularly and tipped over the 250 mark. Aside from my clothes not fitting and feeling ungainly (not to mention stretch marks), it also started to affect my Thyroid levels. That really scared me- my thyroid is one of the few things that felt manageable, so it was a real motivator. I started trying to lose on my own and decided that wasn’t enough, so I joined <popular weight management plan>. I had success (and failure) with it in the past, but the new version seems to fit my needs better. In two weeks I’ve lost 4.2 pounds, with a total weight loss of 11 pounds in six weeks according to the doctor’s scale. A nice start! I know that the first few weeks are usually easy- it’s sticking to it long term when the weight loss slows down that is challenging,

Of course, hubby is behind me 100% and is hoping to ride my coattails to some weight-loss of his own. We also talked it over and agreed to get me a treadmill. The elliptical was aggravating my hips and knees and my doc was not keen on my using it. It means that we will have to finally clean up The Box Room to make space, but that’s something that we’ve been needing to do anyway. That reminds me, I really need to buy a lamp for that room, too. I am looking forward to  walking every day whatever the weather without bugs or humidity- it is finally cooling off here in Florida, but now it’s also getting dark earlier. Do you use a treadmill that you love? Please let me know! I’m looking for good ideas. After some debate I decided not to go with a manual because of my knees- I know it is a better workout and is easier to move, you can use it anywhere (and, of course, cheaper) but if it is too difficult it won’t be used.

Another motivator for weight loss and exercise is to deal with my (newly diagnosed) sleep apnea. I have a pretty severe case. Hubby has been warning me for a while, but a family member was diagnosed with moderate recently and it finally got me to schedule a sleep study. I go back for the next round soon to test out a mask. The sleep study itself wasn’t bad- the tech was a sweetheart and she is currently struggling to identify an autoimmune disease of her own (probably RA). It was like staying in a moderate nice hotel except you are hooked up to a dozen or so wires. I had really weird dreams (about the sleep study of course. Also- I do not recommend reading about werewolves before you fall asleep. Just saying.) Oh, and make sure that you REALLY wash the stuff out of your hair that they use to attach the sensors- that was a gross discovery after I was already halfway to work. I may take a day off next time- I was pretty zonked the next day (they had me up later at night and earlier in the morning than I usually sleep). The results were frighteningly clear, though, that it’s important that I take care of this. I like the idea of being more rested and alert. I think the hardest part is cutting out caffeine for the study- I gave myself a week and a half to slowly taper but still have been fighting headaches and migraines. I am keeping my intake low and may phase it out entirely.

So what else? My flu shot yesterday was a breeze- hardly any soreness, so I hope that it will be another smooth year. My allergy shots are now every other week (unless I get chomped pulling weeds in the yard- then I get a week off). I had an ergonomic evaluation at work and had to make a bunch of changes. I’m just waiting for them to install my keyboard tray, hopefully tomorrow. The split keyboard is taking some getting used to- having it at the proper height should help. I am trying to replicate all the adjustments at home as well so I’m more consistent, and bought myself the same keyboard and an adjustable office chair. I wish I had that of that sooner!

I think that’s more than enough for now. I’ve had some fun trips I may write about and my family will be in town for a few days and I’m really looking forward to seeing them. I hope that you are all as well as possible!

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Leslie Rott of Getting Closer to Myself is hosting this month’s Patients for a Moment blog carnival. It’s been a while since I participated in one of these, but my writing inspiration has been dry as of late, so I’m hoping this will give me a jump-start.

Leslie’s question is: What’s your Achilles heel when it comes to illness? We all have that one thing that pushes us over the edge, as far as chronic illness is concerned. What is the one thing, no matter how seemingly minor or severe, that really gets to you?  And what do you do about it?

I feel that I have two. One is something that completely wrecks me emotionally. The other makes managing my health enormously harder.

From early in my illness, before my first diagnosis, the event that really frightened me and helped me realise that something was Really Wrong was when my hair started falling out. With my ups and downs of medications, treatments, and illnesses, few things knock me more for a loop emotionally and psychologically than losing my hair.

Hypothyroidism makes it fall out. My medication to treat my thyroid makes it fall out. Stress makes it fall out. Chemo makes it fall out.

You can see how this is a bit of a concern for me.

With so many factors impacting my hair, I keep a close eye on my hairbrush and clothes, as it’s often the first sign that something is off. This has made me just a bit paranoid about it. I have tried both shorter and longer hair for the thin times, special shampoos, making sure I get enough omega oils, etc. I’m at the mercy of my body and my hair shows it.

There’s not much I can really do about it, except not let it bother me too much. I don’t think that I’m overly obsessed with my appearance, but hair loss triggers something deep in my psyche.

My other Achilles heel is one that affects just about everyone with a chronic condition: sleep.

I’ve written before about my struggles with insomnia and my success with melatonin. While it’s not a 100% fix, it has gone a long way to helping me regulate my sleep.

That said, bad nights happen, and they always seem to bring friends. My mini-vacation last week was interrupted by some poor sleep, which kept me from accomplishing everything I hoped to do. A couple days over the weekend on top of that and I’m dragging today.

A few nights of poor sleep wrecks my mood, I’m more likely to eat comfort foods, and I ache more than usual (which is saying something).

Again, there is little that I can other than what I already do to manage my insomnia- it’s mostly a waiting game. I’m contemplating taking another day off sometime soon just to rest and recoup. *sigh*

So, what are the things that throw you off the tracks?

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One of the smallest things that can make a huge difference in my day is oversleeping my early morning meds.

In an ideal world, I go to bed at a reasonable time, have a decent night’s sleep, and wake up art 5:30 am to take my thyroid medication. Most days I manage to accomplish this even without the second criteria, but every once in a while my body clock doesn’t go off, and the whole day slowly slides off the rails.

I should start by saying that I don’t set an alarm for my early morning meds- if I did, not only would my husband make me sleep in the other room, but I probably wouldn’t get back to sleep afterwards, and that one hour of sleep in the morning is often the difference between whether I can drive myself to work or not (some days, whether I get to work at all).

I need to take my meds on an empty stomach and not eat for a full hour afterwards. Being late one day, or only waiting a half hour before eating, isn’t the end of the world. But 2-3 days of that sort of behaviour puts me in a pretty bad place- my thyroid is balanced, but only if I maintain my meds, so I’m as strict as I can be about them.

This means leaving for work without having eaten breakfast. Which means that I also haven’t taken my regular morning meds, since I need to take those with food. Usually I bring pills to work and buy a bagel and tea, but I’m missing my RA meds that take the edge off my morning stiffness and pain (which can also determine whether I can drive myself to work or not). The new car helps, since it is higher off the ground and easier to get in and out of if my hips/back are stiff and painful. However, it’s still a new car and I’d rather not drive it groggy until I am more used to it. (Speaking of, I have now driven it in the rain twice and discovered just how responsive it is when I suddenly realised that there was a turtle crossing the road in front of me. Thankfully there was no on in the right lane since the swerve was instinctual. I hope he got across okay before someone else came along; I have hope, since he was moving pretty fast, for a turtle.)

So, yes, this morning I woke at 6:20 and realised I hadn’t taken my meds. I use a weekly pill case to make absolutely sure whether I’ve taken that day’s pill or not, because I don’t always remember whether I actually did take since I’m usually not fully awake that early. I have staggered to bathroom, drunk a glass of water, and stumbled back to bed, all without taking my pill. Those are the best days.

Because it was already almost time to get up anyway, I didn’t go back to bed and instead read comics online, got dressed, and fed the cats. I brought my late-morning pills to work with a banana and now, two hours behind schedule, I am back on track for the day. I now get to obsess about why I overslept, since oversleeping is sometimes a sign that I’m fighting something off but the other symptoms haven’t become obvious yet. Since we are flying out to a family reunion tomorrow for a few days, I naturally do not want to be the least bit sick. I truly wish I could sleep later and then all would be less of an issue.

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So, it’s been a whirlwind week, and, (unbelievably enough) so far I’ve DONE IT ALL. While I’m exhausted and run ragged, it was so wonderful to:

  • Hear about innovation in my field from someone who is excited about what we do
  • Attend a conference to network and meet new people
  • Eat delicious Indian food and catch up with good friends in person instead of over the ‘net
  • Have an evening to catch up on housework (yes, this is a good thing!)
  • And coming up today: some quality girl-time and relaxing over sushi!

My dentist appointment went well (just a cleaning) and while my new dental insurance is slightly headache-inducing, it’s still nice to not be paying full price any more!

My doctor’s appointment also went fairly well- we finally have my labs from my last rheum so I can finally cut those ties with a sigh of relief. We are tweaking my treatment and I have a new round of x-rays for my hands and wrists coming up. There is a chance that some of my hand pain is actually osteo, which is not thrilling but not entirely unexpected, either. I’m also scheduling an appointment with an allergist to finally get a full screening and figure out what’s causing my food reaction (every time I think I can rule something out it crops up again).

The hardest part of this week has been the fatigue by far- it looks like my thyroid is, indeed, slightly off which explains the sleep/dream issues. Throw in a dose of insomnia and it’s been a very, very rough week. I’m working to get all these things balanced as best I can so that I can be as well as possible. I picture it a bit like walking across the deck of a ship that is pitching and yawing- you know that every step is going to be tricky and yet very, very important.

The biggest step (what feels like stepping over the side of the ship, to me) is dealing with my anxiety and depression. I’ve been blaming a lot on stress and don’t get me wrong, my job and health are each stress-inducing own its own- combined it’s a double-whammy (and work is even more stressful than usual). But when I catch myself almost bursting into tears in the doctor’s office just considering therapy… yeah, there’s stuff going on that I’m not dealing with particularly well. This seems to recur (or be brought back to my conscious attention) every time I have a new doctor or diagnosis (last round was just before the neuro appointment for the numbness in my hands).

So, yeah. There’s that. I’m not suicidal, but I’m struggling daily. I am aware of and grateful for all the good that’s going on in my life, but sometimes it’s hard to get a grip on- everything is a just a bit nebulous and it’s hard to turn off the broken record running in the back of my brain that says “I’m tired, I hurt” over and over again. I feel my limitations keenly, and my annual performance appraisal once again brought to my attention that I am harder on myself, and have higher expectations for myself, than anyone else is or does. I can give others a break- why can’t I cut myself some slack on occasion? This is going to be the next big step for me- I’m inching closer to it all the time.

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