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Archive for the ‘Fibromyalgia’ Category

We had a call early this morning. I was confused and a bit concerned- on a regular work day we’d be up (in fact, I’d already be out the door) but we both have today off. Turned out to be the foster service- Recon was adopted by a family with children! We’re so happy to hear that- it will be a much better fit and we’re relieved that he found a home so quickly.

Hubby also had yesterday off from work, and I came home to find the tree up and gifts under it! I just didn’t have the spoons to deal with a tree this year, so I’m super happy. My sister sent us one of her hand-made ornaments in her Christmas package so it was the first thing on the tree- I’ll put up other decorations later today.

I ended up giving myself a second “rest” day from exercise, yesterday. By the time family birthday celebrations were done I was fighting some bad nerve pain and ended up going to bed early. The only thing on my “must-do” list for today is to exercise and shower (well, and scoop cat litter, but that’s always on the list).

I hope everyone has a restful and happy holiday!

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I am trying very hard to make updating here a regular part of my schedule. It can be tough to do, especially when there is no real news. After all my GI tests came back negative I was a bit at a loss. In general, I have IBS-D (no big surprise there). I am officially on a lactose-free diet for pretty much ever. It has been an easier transition than I expected, although I really miss cheese. I’m still doing daily probiotics and metamucil and take meds for it three times a day. I’ve figured out a few of my triggers. The next step is working with a nutritionist to establish an adapted FODMAP diet but I’m dragging my feet a bit… I’ve been doing better and I’m a little overwhelmed- I may wait until after the medical study I’m participating in wraps up next week.

The study has been going well, even if I’m struggling to meet my self-established goals. The support structure is a huge help, and having more tools in my treatment repertoire is a good thing. I saw my rheumatologist today and have a script for a new TENS unit (since my old one bit the dust). I’ll be swinging by a medical supply store soon- I don’t use it often, but it is really, really helpful to have when I need it. I have also been reminded how useful icing is. I really don’t like the cold (it makes my everything ache), but it really does help certain kinds of pain. The PT for the study also lined me up with some good exercises for my knee (I twisted it two weeks ago and I’m still getting back up to speed).

I’m still using the FitBit and will write a formal review when the study is over. I haven’t been doing great with tracking my food, but being able to record and evaluate my sleep patterns is really useful (I just have to remember to turn the sleep tracker setting on and off- I sometimes have trouble getting it to switch programs).  I haven’t lost much weight, but I haven’t gained any and can tighten my belt a notch and slip my wedding ring off easily again (when my hands aren’t swollen), which are both welcome progress markers.  :}

Hubby and I talked it over and decided that this isn’t a good time to buy a new house and we’re putting the hunt on hold. I am disappointed but also relieved- we’ll still be buying a house and moving eventually, but the timing just isn’t right at the moment. Hubby and the cats are keeping me sane, and I’m looking forward to the Independence Day weekend (even if I know my sleep will suck thanks to fireworks every night). I am still enjoying learning how to care for my betta fish (named Fish, because, seriously, I can NOT think of a name for him). After a bumpy start he’s doing well and we love giving him bloodworm treats- he’s so FIERCE!

Back to the subject of this post- my doctor is moving to a new location. I really like working with her, but the new office is not at all convenient, so I’ll be staying with my current practice and have been assigned to their new rheumatologist. I’ll really miss working with her and I’m a little sad but completely understand (her new practice will be closer to home for her). Overall, my pain is down and while I’m still frequently tired, I’m not fatigued (which is a huge improvement). My bloodwork still isn’t where we would like it to be, but at this point I’d be going back on oral chemo and I’m really hoping to not do that. I have three months before I meet with the new doc and we’ll she how my rates are then. *fingers crossed*

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…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

FINAL HOURS: Back my Kickstarter for a ChronicBabe book. It’s going to be a blast!
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Jeebus- can’t believe that I forgot to post this. Heard back from my doctor’s office with my lab work. My inflammation levels are up, but nothing else unusual, which is a tentatively good thing. I left a message that I’m going to wait a couple more weeks to recover from travel and to adjust to the med changes. My next appointment is August 6, so I’ll wait until then (unless something else comes up). If I’m not doing significantly better, I will move to a new med. I think it will replace one of the ones I just started, rather then being added on- I’ll know more later.

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Still waiting on bloodwork results, but research has confirmed that 100% of the random symptoms I’ve been experiencing for the last few months are part of the fibro suite. Part of me still hopes that the bloodwork comes back clear, but then I’ll have to address each individual issue with my medical team- it’s a bit to think that a fibro diagnosis would be “easier”. *sigh*

Speaking of my medical team, the endo I hoped to transfer to is moving out of the area, so I am stuck with my current doc for a while longer. The medical centre where my rheumatologist is plans to add a new endo, so once they have someone on staff I’ll make an appointment.

All this is going on the week before I fly out to Utah for a week-long conference. Yesterday was a dental cleaning and today is my allergy shot. I am starting to think that this was foolish on my part, because by the time I get out there I’m already going to be worn out. This will also be my first flight carrying my CPAP machine, so that should be… interesting. As soon as I land I need to hunt up a pharmacy or grocery store to pick up distilled water; I can get by on bottled water for a couple days in a pinch. I think I will be glad for the humidifier though- it is very cool and dry there. Packing extra warm layers for chilly evenings- which reminds me, I should pack my largest heating pad. *adds it to the list*

And while I’m making my packing list, that reminds me that I need to do a review here. I have discovered the joy that is SmartWool socks! I’m practically giddy about them- one of the few times that I wrote a review for a commercial site. That will  probably happen after I get back (and recover) from my trip.

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Up in the Air

My apologies for my posting falling off again, but things have been a bit rough lately. To sum things up: I am currently waiting for my latest bloodwork to come back to help determine whether I have Fibromyalgia or not. My rheumatologist already started me on my first medication, and I’m having some light-headedness as a side-effect. Hopefully that will decrease in intensity as my body adjusts- for now it is a practice in mindfulness to stay focused at work. In three weeks I will restart my anxiety meds (they didn’t want to make too many changes all at once).

To say the least I am frustrated and not terribly thrilled. I haven’t actually had a bloodtest come back positive with rheumatoid factors since I started seeing this new doctor, and a little voice in my head wonders if I was misdiagnosed at the beginning, seven years ago. I’m trying to not think about that too much, since that way lies madness; it’s quite possible (and likely) for my RA to be in remission and to still develop additional autoimmune diseases. Fun.

So now I’m brushing up on my fibro knowledge- I try to stay current with related treatments, so our attack plan is no surprise so far. I’ve actually been on this med before when we were diagnosing the neuro issues in my arms, which turned out to be cubital tunnel.

Mostly, right now, I’m disappointed. I’m having to set some things aside so that I can focus on my health, and at least of my goals may no longer be an option for me. It’s one thing to know that things Aren’t Quite Right- it’s entirely another to know that something is Wrong. I’ll get into more details later, but for now, please bear with me, and thanks for stopping by. I hope that you are all As Well As Possible *hugs*

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