Fitbit Charge HR v Charge 2

Charge HR on the left and Charge 2 on the right.

So I have technically owned 3 different Charge HRs. First one was a refurb from woot.com that went dead and I just returned it. Other two were from fibit directly. The first one the band started peeling off the electronic head? unit? and the second one still technically works, probably… but it was definitely just ‘going dead’. I was having major problems with battery life and my step count was starting to look, well, wrong. I think the screen tap thing was working half the time too. I did a lot of comparison between the Charge 2 and the Ulta HR and a lot of people seemed to like the Charge 2 better. One of the biggest thing was keeping the hardware button. I like the slim look of the ulta and I also like the different band but I knew I’d get annoyed without the button – eventually.

Charge 2 cable is the longer cable, at least twice as long as the HR cable. The HR is above the Charge 2 in the picture.

First, let’s get one thing out of the way. The thing I don’t like about Fitbits in general is the sizing. They have small, large, and extra large. So technically the large is the medium, but no, it isn’t. My wrist is just big enough to be too big for the small and so the large is too big for me. The band is tightened almost the whole way. Also, for some reason, I need to wear a Fitbit with the face/screen on the inside of my wrist. Otherwise I have this big open area between the band and my wrist on the outside/ulna nerve side. That wasn’t comfortable at all! So it’s an annoyance but I found a reasonable work around.

That being said, a quick Google search told me I was still sticking with the Fitbit because I wanted sleep and heart rate tracking, and I have an Android phone and I already knew the Fitbit app has no major problems with my phone. Beyond the extreme price difference. Fitness trackers have a wide range of prices.

In general, the Charge HR was good. The sleep and heart rate tracking helped me out a lot. Step counting is useful, until it’s not. Based on the step counts on my Charge 2, my HR step counts had lost accuracy. Considerably, on some days. I did return the second Fibit HR with the broken band and receive my last Fitbit HR for free as a replacement. That process was painless.

So the things I didn’t like about the Charge HR:

  1. It would get caught stuck against my arm and the inside charging area and such would dig into my arm and it would hurt.
  2. The feel of the band wasn’t comfortable, especially when ‘dirty’ and it got uglier looking when dirty.
  3. The way the band curled because of how it’s connected to the face/sensor area and the little screws in the back that attracted dirt as soon as you put it on the very first time. Based on how the band also peeled away, it was clearly a design flaw.
  4. Battery life, especially once it started getting old. I was needing to charge the thing like every 3 days and I wasn’t syncing it a lot. I also have quick look turned off.
  5. The way the front/screen are molded/shaped. It was really easy to scuff. Also kind of ugly.
  6. I sweat under it as soon as I was warm.
  7. The charger. Ew the charger. It became very hard to get the charger to snap in place on the fitbit so it would charge correctly. Also the cord is too small.

All in all, I was very happy to upgrade.

This is the Charge 2 in the clamp that holds it for charging. 

And the things the Charge 2 does a lot better than the Charge HR or how everything I didn’t like about the Charge HR was fixed:

  1. Wearability. The band feels different and it moves better. The backside of the Charge 2 doesn’t dig into my arm. Improved from the HR. The Charge 2 also looks a little nicer than the HR, just in general.
  2. I haven’t noticed the band feeling ‘dirty’ and I’ve owned it about a month.
  3. The band doesn’t have the same annoying curl. The curl is still present but since the band can be removed it feels different to me and the difference is better.
  4. Oh the battery life! It lasts at least 5 days? It might last closer to a week when I don’t poke at the app and sync it multiple times a day. You know, that shiny electronic thing where you use it more because it’s new? I’m past that and the battery life is excellent. (I continue to keep quick look turned off because I find it distracting. I tap the screen instead.)
  5. The screen is fabulous. It’s easier to read and see. I can see it outside. It might be a little more resistant to scuffs/scratches but I can’t say for sure.
  6. The band doesn’t stick quite the same and in the month I’ve owned it I think I’ve taken the fitbit off twice because it was too hot? I live in TX but don’t spend a lot of time outside so YMMV.
  7. The new charger! The new charge is awesome! It ‘plugs in’ only one way but that’s fairly standard. The clip is easier to use and there’s a hole in the side for the button. It’s also easier to reboot and you won’t accidentally unplug the tracker when trying to reboot it. I think it’s also easier to use if you have any range of motion, gripping, or strength problems in your hands.

The things that are great about the Charge 2:

  1. The new sleep cycle data. It shows you deep sleep, light sleep, REM sleep, and awake time. It’s been enlightening. If I feel extra crappy physically I didn’t get enough deep sleep. If I feel completely dead mentally it’s because I didn’t get enough time in REM. It uses heart rate data and will present the basic data if it can’t use heart rate data.
  2. I feel like the heart rate might be more accurate but I haven’t had much chance yet to compare it with readings at doctor offices.
  3. The band is definitely much more comfortable. Also, worth noting, the band is removable so you have options. I haven’t spend the money on a second band yet. (It’s like Apple accessories.) Also worth noting, I’ve noticed, for lack of a better word, twisting, where the band connects on either side. It doesn’t seem like a big problem and might be more of an issue because of the size of the tracker compared to the size of my wrist? If it ends up an issue I’ll contact Fibit.
  4. It reminds you to move at the end of each hour if you haven’t hit the magical 250 steps per hour (or whatever it is). I still haven’t remembered to try out the guided breathing/relaxation thing.
  5. I haven’t mentioned the exercise specific stuff because I don’t exercise enough for my fitbit to be helpful in that regard.
  6. The hardware button is larger and easier to press. It’s also easier to reboot.

Two more pictures to compare the trackers:

The Charge 2 is on the top in this picture, HR on the bottom. Good comparison of the button on the side.


Back side of the trackers. The HR is on the top, Charge 2 on the bottom.

I definitely recommend the Charge 2 if you’re interested in sleep tracking and or heart rate tracking. Also, from my Google searches it’s one of the cheaper trackers out there if you have these requirements, or was 6 weeks ago. If you have an Android phone, definitely check phone support on the different tracker apps too. I looked at a Garmon tracker, I think, but my Android phone was like the only one not listed and besides – they actually listed out Android phones which was a red flag for me. Fitbit also offers an extra warranty now. Reminded me of AppleCare so I went with it because AppleCare is useful.

My biggest problem with the Charge 2 so far is that it seems like every time the app is updated I need to reboot the tracker and my phone to continue to get the hourly reminders to move. Or, there’s something else wrong? I haven’t figured it out yet. If it continues I’ll contact Fitbit.

Basically, I’m very happy I upgraded from the Charge HR to the Charge 2 and I’m content that I stayed with Fitbit. My problem with the sizing offered is minor. Also, the new sleep stages/data are awesome.

Chronic life: June and July 2017 doctor visits

I actually had a bit of a break from appointments in June because a good friend visited but that’s not the point of this point. The point of the post is which medical professionals did I see.

June was definitely a quiet month. I’m still going to the chiropractor weekly. Both the adjustments and the acupuncture help. Actually saw the chiropractor five times in the month of June. Then I had physical therapy twice. I’m glad I can manage that twice a week now. I received my Xolair and that was a happy day. And then beyond that I just had a counseling session – which made me realize how damn busy I’ve been in the past 6 to 8 weeks – and I had my – what do they call it? – “women’s health exam” and had hormone levels checked too.

That’s only a total eleven appointments in the month of June! Ranging from 25 minutes to a little over an hour. Each appointment is 50-60 minutes in the car, round trip.

And now we’re in July.

This Friday I get my next Xolair shots and see the chiropractor. I’ve got 3 or 4 chiropractor appointments scheduled. I might cancel one depending on how I feel. I only have one physical therapy session scheduled so far. I might wait 3 weeks for the next one. I’ve got a physical scheduled with my new-ish internist and I’ll have to go on another day to get the labs done since I have to fast. Beyond that, there’s three different specialists and then a hand sonogram.

So let’s see, that’s a total of eleven appointments again. And that doesn’t count the dermatologist visit I probably need to schedule and another round of Xolair if I can really (fucking finally) get it scheduled for 3 weeks now.

All of this while somehow managing to game, go to the movies, and make it to knitting group. And four and a half days of migraines. Seriously, about 86 hours, when I look back at my migraines app. Just 4 different migraines though.

I wish I got paid for my job instead of having to pay other people. Or maybe an assistant to keep track of my schedule at the very least? I’m a professional dammit!

Gorgeous Lilacs close up

There’s a few things you end up missing when you move everything and go live in another state. After moving from PA and living in TX for over a decade I still miss the spring flowers of the Northeastern US…

Thanks to Summer for sharing these pictures. She periodically posts more flower pictures on her Instagram (and cats, and life, and stuff).

I thought it would be nice to throw the pictures up here based on Instagram’s limitations. Especially since I’ve had “a day” and these are so pretty! <3

Please don’t share these pictures without giving credit to Summer via her Instagram.

Dear Aetna, you’re still horrible

I just got off the phone with Aetna Specialty Pharmacy and I’ve determined that sometimes incompetence (or ignorance) is like an onion.

It’s also relevant to point out that when you mention Aetna on Twitter you get an auto response from their “social media team” to contact them at this email and blah blah blah. I finally said fuck it and responded the last time. They didn’t resolve anything but it was an interesting exercise? Or something. Anyways. After this fiasco with Aetna to get my tecfidera filled, I decided to email that same social media email again. I’m not holding my breath. They should fucking give me refunds. (By the way, the email in attachments they send back to you can only be opened in Microsoft IE or Edge but they don’t tell you that.)

I’m going to share the email, because it’s the Internet and nothing ever goes away.

It’s taken me two weeks to get my tecfidera scheduled for delivery and that is only because I’ve been proactive. A less educated patient or customer would have possibly run out of their medicine.

My doctor’s office did prior authorization first. I think I received the notice around 4/22. Then the prior authorization approval that I got in the mail told me I could get the tecfidera filled at *any* pharmacy. It said any. So I called Aetna RX Home delivery and they set it up. Cigna did tecfidera under the speciality pharmacy but I figured Aetna must be different since they are different with so many other things.

Then I heard nothing. I contacted my doctor’s office about the prescription at least twice between then and now (5/8). Today my doctor’s office called Aetna again and thankfully she gave me the number she called. She said the prescription should be ready but she had no idea if I was supposed to call.

After calling Aetna Specialty pharmacy I learned this:

1. Aetna RX home delivery processed the order 4/27.
2. Then it was transferred to Aetna Speciality 4/28.
3. Aetna Speciality started processing it 5/3 but the prior authorization wasn’t found until 5/5.
4. Apparently there was something else wrong? because the prescription wasn’t ready until my doctor’s office called on 5/8.
5. The Aetna Specialty rep told me I should have been called sometime today (5/8).

Why was I notified that I could fill my prescription for Tecfidera at any pharmacy?

Why did the Aetna RX Home delivery rep not know that the pharmacy she works for could not process the prescription?

WHY was I not contacted at any point in this mess? I should have been contacted by BOTH Aetna RX Home delivery AND Aetna Specialty Pharmacy.

This is ridiculous and bad for my health.

I’m sure nothing will come of this email either.

So to review, Aetna sent me prior authorization approval at around 4/22 (I don’t want to go dig up the letter) and I didn’t have my prescription actually ready and scheduled for delivery until today on 5/8.

I’m a professional patient. I know how to navigate much of the (United States) healthcare system. I understand a lot about doctor offices, pharmacies, and insurance EOBs (explanation of benefits). I know that Aetna’s pharmacy website is worse than any of the websites my doctors have set up. I know that Aetna doesn’t believe in communicating with their customers. They also apparently don’t believe in communicating with anyone outside their department or division either.

Also, it’s fucking hilarious that Aetna requires their call center reps to end with Thank you for choosing Aetna because it’s a constant reminder that I didn’t have a choice.

In short, if you have to deal with getting prescriptions from Aetna via any kind of mail delivery, make sure your doctor gets you a prescription for XANAX too.

Doctor appts attended April 2017

(I’ve been thinking about doing this. I should get around doing it.)

Attended. like attendance. Like going to a place you have to be by a certain time. Like work. Except it’s work I don’t get paid for. This time around I’ll go with totals and see how that goes.

The appointments

Chiropractor four times. These are 20 to 30 minutes each and round trip to reach the destination is 50-60 minutes. Wait time averages 5 to 10 minutes. These appts are super helpful too.

Counseling once. I’m there about an hour and round trip is 50-60 minutes.

Dentist twice. I think I was there 1.5-2.5 hours because fillings. Round trip is 10-15 minutes.

Spine/pain specialist. I think the appointment was 15-20 minutes but I waited twice as long. It was a follow-up/progress check and I don’t see him again unless I think I need to. 50-60 minutes round trip.

Gastroenterologist follow-up. This one was pretty quick but maybe 20-30 minutes for the appt? Have to valet here. Closer to 60 minutes round trip.

Physical  therapy twice. Appointments are an hour long. I kind of take the long way back to the car to stretch after the appointment. Often takes me an additional 10 minutes to finish up too. Round trip is 45-55 minutes?

Xolair at the infusion center. Once. It takes 15-20 minutes for my dose to be ready and the nurse to be ready to administer it. Then I’m there at least 30 minutes. This time I also waited because someone was inconsiderate. Probably there close to 1.5 hours.

Rheumatologist follow-up. I remember I was there all total for an hour. It usually takes longer. The round trip is about 30-35 minutes though.

To summarize

That’s 13 appointments and at least 12 hours driving. Wait time before an appointment was anywhere from 5 to 30 minutes. Assuming I waited 10 minutes before each appointment – which is really good – That was 2 hours and 10 minutes of waiting in waiting rooms and or exam rooms. I bet the average was more like 20 minutes before seeing medical assistants or doctors… and so that’s 4 hours and 20 minutes sitting and waiting.

Doctor/therapy appointments are a little trickier to add up. Three appointments an hour long. Two appointments that were about two hours each. Xolair – not an appointment like you think with was about 1.5 hours.  Let’s call the chiropractor appointments an hour total for ease of math. Also for ease let’s call the three follow-ups with specialists an hour total.

Side note: follow-ups with specialists are varying levels of useful. For example I waited 30 minutes to see the spine specialist so that his opinion of my progress could be on chart in case it’s ever important in the future. Not specifically helpful. The rheumatologist drew blood though to see if lab work shows anything else is going on because of changes in some of my symptoms.

That totals at least 10 hours with therapists or doctors.

So my rough math says I spent about 10 hours interacting with medical professionals, 12 hours driving, and around 4 hours sitting in waiting rooms. 

This doesn’t include paying, scheduling future appointments, or any blood draws for lab work.

And doctor appointments along with the driving they entail can trigger migraines or headaches for me. 9 total headaches ranging from 39 hours total to 2 hours. The dentist appts helped to trigger at least 2 headaches. Totally the time periods for each headache, according to my app, I spent over 4 and a half days this month with some kind of pain in my head. (It was an abnormally high month.)

And other stuff during the month:

  • Movie! Saw The Matrix in theater. It kinda holds up well minus pay phones and cell phones the size of bricks. It was also fun in theater because the audience was laughing at all the “good lines” like “WOAH”.(Seen it many times before, just never in theater.)
  • Haircuts
  • knitting group – once
  • other stuff at home: phone calls for refills, scheduling and rescheduling or confirming appts; updating paperwork and making notes about doctor appointments

This is what I mean by “professional patient.”

April 2017: MCAS attack

Technically this is MCAS attack number 2 for April but for the purposes of this experiment it doesn’t matter. To be updated as I go. This is my first attempt. If you are reading this and would like other information, it doesn’t hurt to ask.

Symptoms peaked/exploded when I woke up at 5:20 am April 19, 2017

possible triggers leading up to event
1. dental work/fillings April 10 and April 12, both sides of my face, some pain after top left fillings. migraine for over 12 hours April 14 with trigeminal neuropathy in face but I could still function at home well enough
2. anti-fungal troche use around April 14? This is about the same time a rash presenting mostly as red dots appeared. Mostly on my arms
3. bug bite on my earlobe evening of April 16. I reacted severely and within minutes. Throbbing/itchy ear. April 17 my neck was also itchy. Needed oral benadryl.
4. (physical) stress of doctor appointment burnout
5. Storms/weather April 17
6. need xolair in less than a week. Next Xolair scheduled for April 24

symptoms leading up to event
1. tachycardia on multiple days which increased my overall heart rate for that day. Weird spikes in heart rate monitor on fitbit. I couldn’t figure out why my heart rate was spiking so much. Read something that reminded me of tachycardia symptom for MCAS. This includes “wonky” heart rate charted when I’m asleep. (Again thank you fitbit.)
2. pain in lower back and SI joint pain for over 3 days
3. joint pain separate from SI joint/back pain
4. I don’t know if the aforementioned rash was due to the troche or a symptom of the MCAS attack
5. nausea morning of April 18
6. increased fatigue and increased sleep issues for over 3 days
7. April 18 – feeling of pressure in my head not in any of the usual places I have migraine/headache pain
8. interstitial cystitis multi-symptoms flare
9. Some GI distress? Possible wider range of symptoms than usual
10. headache – evening April 18 which zomig nasal spray helped but then the zomig wore off and I started having some pain again
11. increase in severity of blurry vision, eye pain
12. increased skin sensitivity – not just from pressure
13. I think I remember sound sensitivity previous to 18th

Things that help
1. benadryl and tylenol and my usual load of antihistamines (doxepin, xyzal, hydroxyzine, zantac) can hold back the tide for a little while but I need something stronger eventually
2. xolair seems to protect me. I can track triggers and symptoms better because my baseline is a little more stable. I think xolair is stopping more headaches from turning into migraines.
3. PREDNISONE – this is second attack I’ve had prednisone available. It has higher efficacy rate for pain management than opiates do until the pain levels lessen and after that tylenol is enough.
4. not moving AT ALL
5. heat, but not directly on my face
6. avoiding stress as much as possible

Initial symptoms when migraine occurred
1. migraine, trigeminal neuropathy in face worse than usual migraine
2. fatigue
3. lower back pain, pelvic/abdominal pain. Bladder pain. Do I have chronic pelvic pain?
4. confusion, anxiety, depression – like a panic attack but not panic
5. nausea
6. flushing, skin sensitive to touch
7. muscle tension/stiffness
8. sound/light sensitivity but it’s mild-moderate
(rash still present, no idea if better or same, I don’t think it’s worse)

Log:

April 18
afternoon – strong cravings for chocolate and fats
evening – odd mind clouding pain in back/right side of head. fatigue and other confusing symptoms. Finally used zomig around 7-7:30 pm.
11:30 pm – very very tired, hot shower helped, feel asleep using tens on neck which helped I think. I think I remember pain returning in my head but not bad enough to stop me from sleeping and I thought maybe headache was gone. Needed to wake up to pee once.

April 19
5:20 am – woke up because of the pain in my head and abdomen. getting up for heat/tramadol and zofran immediately made pain worse. strong nausea when standing
laid in bed moving as little as possible and pain was at a 2 if I didn’t move. Flaring to 5 when I move my head laying down or moving to drink water without sitting up. Flaring to 8 when standing. tramadol gave very little relief but still worth taking. Laid in bed looking at my phone to distract myself from the pain that wouldn’t let me sleep.
7:30 am – help from Josh to take usual morning meds load (Accolate, baclofen, antihistamines) Also took 500 mg Tylenol and 25 mg Benadryl because I had it available.
8 am – 20 mg prednisone with large glass of (goat) milk and 2 small cookies
8:45 am – I can feel the pain is better even without moving – can sit and stand with minimal pain but moving still makes pain worse. Now pain is more like a 5 when moving too fast while standing
10-10:30 am – assembled breakfast, took the rest of my morning meds, and ate more for those meds (SSRI, MS meds, vitamins) while at computer desk (closer to kitchen than couch)
**note: able to move around slowly and accomplish small tasks as well as be at computer to log this despite pain in neck, lower back, abdomen, face, head* – without prednisone I would have been immobile and probably needing to wait to “stack” hydrocodone and 50 mg of benadryl on so that I could eventually pass out or lower pain levels enough to be able to sit up right.
(12:30 pm left computer)
12:45 pm – 2nd dose of 20 mg prednisone
2:30 pm – tramadol because I realized that’s why the pain in the face was getting worse – more than 6 hours since last dose
– pressure/pelvic pain slightly better with two hours of heating pad on the couch but IC symptoms have progressed to blood in urine? (also waiting still waiting to hear back about positive effects of pred for my bladder)
3:30-4:00 pm – regular afternoon meds except I’m going back to 1 xyzal and 4 hydroxyzine. Also took more reglan since nausea seems to be returning. I’ll switch back to 2000mg quercetin today too. (I tried it Sunday through Tuesday and today is Wednesday)
*tachycardia still present, maybe worse?*
5-5:15 pm – tired of this tachycardia, BP 115/61 and pulse around 110, while RECLINED on couch with legs up, also took 2.5 mg Valium to see if that would help
6 pm – I’ve had increased frequency of going to pee but it seems to be calming down. pressure in my abdomen is definitely better than it was this morning. Valium helped, pulse in the 90s when sitting
8-10 pm – dinner, extra benadryl, tylenol, regular meds, feeling a little better after dinner except for abdomen. pain is better with tylenol. last round of meds at 10 pm
– not showering, rash on arms definitely cleared up from prednisone
11 pm – in bed. Tens for upper back at neck and heat on my abdomen. Feeling tons better laying down and since my night-time meds have kicked in (including 20 mg doxepin and more hydroxyzine)
Both sides of my jaw have started snapping and cracking. Took awhile to get to sleep and then according to my fitbit I probably never left REM sleep. Don’t know what’s worse, 5 hours of sleep with a full sleep cycle or cycling through REM. (Side note it was also first night Rey and Finn weren’t in their room.)

April 20
5:30 am – migraine pain is back because most of my meds are worn off or low. I should probably try taking 10 pm hydroxyzine when I’m actually getting in bed or turning out the light. I think that would help this a ton. Awake to pee earlier in the night, otherwise bladder much better, no other obvious symptoms yet. 1000 mg tylenol and 25 mg benadryl helped my headache
8 am – up. eye pain. back pain better. Abdomen/GI still touchy, mac & cheese for dinner last night was “too heavy”, skin better – no flushing and less sensitive
9 am – first 20 mg dose of prednisone. breakfast and meds. Went smoothie with water for stomach
10 am – feeling ok post breakfast. Water based smoothie means I’ve super hydrated
12:30 pm – all things considered I feel ok. Prednisone definitely figures into that of course. GI/bladder/migraine pain are all minimal. I wonder if I can do 30 mg pred total today instead of 40.
1:00 pm – 10 mg prednisone, 30 for the day. I seem to be doing ok on the decreased dose. GI and bladder are calmer. The migraine is almost gone? Hard to tell with 2 nights of crap sleep.
3:45 pm – regular afternoon pills. day 2 of switching 2nd xyzal for hydroxyzine
*barometric pressure has started to fall, supposed to continue thru today and tomorrow
5-7:00 pm – estimate – flushing spiked because of anxiety spiking from prednisone side effects. In the past Xanax hasn’t helped this.
7:30 – started feeling better
8-9:00 pm – dinner, meds. feeling better but unsure if migraine is gone
*note: ate about 1500 calories for the day, instead of 1800. Second time that it feels like prednisone has calmed down my body and the food actually feeds it.
9:30-10:30 pm – showering, bedtime meds, did not remember to delay 10:00 pm hydroxyzine to later in the night, note that I definitely do have the oral/nasal dermatitis rash thing that the dermatologist diagnosed last summer – peeling around nose and mouth. Rosadan used
midnight – up one last time to pee, had trouble getting to sleep, typical for prednisone, went to sleep little later

April 21
*went to sleep late and didn’t have to wake up to pee, bladder symptoms down, some GI symptoms – mostly gas?
8:30 am – up to feed cats, take first round of meds, migraine definitely gone, GI calmer, eyes hurt, I think I might be dilating later. Reapplied rosadan, rash looks better.
9:30 am – breakfast and meds, 20 mg prednisone to start taper
*have flushing and slight tremor. My guess is that it’s prednisone but no idea.
**barometric pressure**
10:00 am – 29.9 in
forecasted to be 29.64 in at 7 pm
11 am – dilated eyes because of severe blurriness and pain. This limited my activities. Still ended up with eye strain headache.
12:30 pm – first lunch
2:30 pm – chiropractor appt, also ran late. acupuncture and resting my eyes helped eyes/headache for a little but then driving home ruined everything again. (tried zomig at 2 for head since I couldn’t tell for sure if it was an eye strain headache)
4:15-4:30 pm – 3:30 meds late. (forgot to replace xyzal with hydroxyzine) second lunch. (Laid down with heat on eyes and head got better so I know it’s related to eye strain)
6:00 pm – half valium for muscles, especially post chiropractor. feeling ok except for eyes, some GI discomfort, and some IC symptoms. Nothing major. Overall seems to be an improvement. Leaving the house again for dinner/groceries but I’m not driving.
6:15-8:30 pm – dinner at Twisted Root, groceries at Whole Foods. Despite dinner I think I still ate less calories than “normal”…now clear the eye strain also related to the cold front and severe thunderstorms
10:30-11:30 pm – tired, skipping shower because I stayed up a little late, feeling better. Remembered to take 10 pm hydroxyzine at 11 pm instead.
7000 steps

April 22
*slept mostly ok. Woke up tired but more normal level tired because I did too much yesterday. Didn’t have to wake up to pee. woken up by kittens around 7:30 am. morning stiffness less severe than most of the week
8 am – morning meds
9:30 am – breakfast, rest of morning meds, last day of prednisone 10 mg.
*
ended up much like any other day except fatigue was worse than “normal”
*
reacted to something in dinner which included small amount of garlic and diced/canned tomatoes but no idea to know which/how much/why – face was painfully flushed and slightly throbbing
*
fell asleep early, some abdominal discomfort and back/spine pain when I went to bed
April 23
Woke up with some additional back pain and grogginess but based on everything else and the COLD front? (68 in the house when we woke up) I think I’m ok

Prednisone count:
April 19 (40) – 20 (30) – 21 (20) – 22 (10) totals 10 10 mg tabs taken

Symptom resolution:
1. migraine, trigeminal neuropathy in face worse than usual migraine – Complete resolution
2. Fatigue – improved – step counts increased and sleep quality has improved somewhat
3. lower back pain – improved, pain from weather change also a factor
4. pelvic/abdominal pain. Bladder pain. – Significant improvement
4. confusion, anxiety, depression – like a panic attack but not panic — had problems with anxiety through prednisone taper too – Major improvement
5. Nausea – complete resolution
6. Significant improvement: last instance of flushing was less widespread and a shorter timespan, skin sensitivity lower
7. Improved: muscle tension/stiffness
8. Complete resolution: sound/light sensitivity
9. Tachycardia: improved, no more extremely uncomfortable episodes. Heart rate might be down as of 4/23
10. Eye pain resolved, also with dilating drops
(rash seems to be gone, still not positive on cause)

Fibit screenshots that overlap the time period:


final update April 23, 2017

Tracking doctor visits and mast cell granulation attacks

I’ve been debating doing a month summary for all my doctor visits. Nothing detailed. Types of doctors seen and status of visit. Follow-up, new patient, etc.

I’m leaning towards doing this even though it’s a lot of work and being this sick is a job enough already.

I’ve also decided to try keeping a log of my mast cell explosion episodes since starting Xolair and understanding mast cell activation disease (or syndrome) better.

It’s so damned aggravating that the most information about MCAS on the internet comes from patients. For the Mast cell degranulation attacks (because I think that’s probably the best description) I’ll note what I assume are triggers, times, meds, and ALL symptoms.

If you’re reading this, what would you like to hear about?

Bodies are weird & everything is connected part 1

Laying in the dentist chair this afternoon trying to be comfortable and not being comfortable I realized a thing.

Maybe I’ll make random posts like this more often? Maybe? What do you think? Anyways.

My legs are (slightly) two different lengths and my torso is slightly longer than average….

I bet I’ve spent most of my adult life trying to account for lower back pain – so like making sure I have proper lumbar support – probably having a higher chance of lower back pain from the leg length discrepancy throwing off my hips and then other variables like breasts. By the way breasts get in the way of a lot of things.

Then, because of the leg and torso things, I’ve spent a lot of time not giving my neck proper support, because I can’t have both neck support and lumbar support in the same full back chair.

And then all of these things are (more recently?) made exponentially worse because of Fibromyalgia and lesions in my spine from Multiple Sclerosis and the pain caused by both of these.

So because of my leg discrepancy maybe I have significantly more neck problems than I would otherwise. Who knows.

Cats: Goodbye Leya May 2004-February 6, 2017

Leya was my “baby girl” for most of her life. She was even Miss Leya for a large part of her life. I adopted her in 2004 (I’m pretty sure that’s right.) when I came to visit Josh in Texas when I still lived in PA. A year or so later I moved to Texas (in June 2005).

Leya flew from Texas to central PA and then she drove from PA to Texas via the eastern half of Tennessee so we could visit family on the way. People on the flight found her utterly adorable. For those not up on their geography, we added a few hours to our trip because Tennessee is very wide. It seemed to take forever. Leya wasn’t named for Princess Leia, she was named for a person. I decided to give her name a different spelling, well because? Once she grew up, she was mini Leya as a kitten because she was so tiny but turned into a fat round cat.


You’ll see she’s laying beside a box of sandwich bags.

She was a crazy little kitten and she’s probably provided me with emotional support all my life. She was always there When I was living alone I would occasionally come home to find that a certain kitten had lots of fun. Like the time she dragged a full paper towel roll down from the kitchen table. She must have chased it all around the kitchen. There was paper towels wrapped around the table legs. Next is the vicious Printer Beast. It’s attack power is judging you. This picture is at least a few years old. In her prime before she grew into an old lady, she was adept at getting somewhere so that you couldn’t ignore her, but she wasn’t aggressive about it compared to some of our other cats.


Leya dealt with a lot too. One of our cats used to chase her about and because of that she stress-ate. She had a period where she freaked out for awhile from something. We think something happened in the apartment complex we were living in at the time when we weren’t home and it was super traumatic for her. She used to hide when people showed up. She was always more comfortable around women than men. When I look back it’s really hard to tell how much she actually liked other cats. She used to run and hide at the first crack of thunder too. You always knew when the storms were gone when Leya emerged from under the bed. She had all her little quirks like any cat but she didn’t have quite as many nicknames. Her best nickname was probably Darth Vader. She had allergies most of her life and eventually developed fluid in her lungs and tried to turn into a bulldog with extra tissue around her mouth. She sounded quite a bit like Darth Vader. When she was older, at some point, she chilled out. Instead of hiding because people were here she searched for pets. She turned into an attention whore. A lot of these pictures are Leya quietly seeking attention.


Leya also had talons because I have never successfully taught a kitten to accept nail trimmings.


I’m sure this was accompanied with lots of purrs.


As you can see, Leya had trouble relaxing too. Based on the couch and the bookshelf arrangements, this picture was probably in the last year or so.

Grumpy looking cat would kill you with her mind. I adore this picture, so very much.

These past few years Leya provided me a lot of important emotional support. Every time I felt like shit there was a cat beside me, not judging, just being present. A purring cat really does have positive effects on your health. She was comfort in so many ways. Anxiety threatening a panic attack? She was there to purr for me. I miss her, deeply. She was here for almost 14 years of my life. Because she spent a lot of time actually with me, I seem to have a lot of pictures of her sleeping, waiting for belly rubs.



Cats are experts at hiding pain but you know how they feel by how they look in the eyes.

Until the last few months she spent 90% of the time that I was in the living room on the couch, on the living room with me. In the end she split her time with me and the heated bed, unless I laid out the other heating pad for her. Then she was happy, mostly. About six months ago we found a large lump on her neck. (However much lump you see on the outside? That’s how much lump is on the inside.) We didn’t know how long it had been there because she was not petted on her neck on a regular daily basis. Initially the lump seemed to be a cyst. I had a bad feeling. Then it was getting bigger, and harder. Around the new year she was getting worse, she had a big visit to the vet for blood work, to try to get the cyst smaller by removing fluids from it – which didn’t really work, and treatment for her UTI – which she’d never had in her life. She was slowly going downhill until the last week or so. In one week she went from not eating dry food to not being able to swallow anything solid. At this point it was beyond obvious that the lump was aggressive cancer and had grown behind her esophagus to the other side and so it meant she could not swallow. Fuck cancer, we lost two cats in six months. One to slow moving cancer, one to fast moving cancer. Fuck cancer. Losing two cats in such a short period has made it even harder for me to cope.

Leya loved her belly rubs, but only from her people. As she matured, her circle of people grew to also be regular visitors. She also loved her food. She was a sweet girl, even the vet thought so. She didn’t do the whole lap cat thing but one of her favorite things was to lay on the couch between Josh and I through dinner and then watching tv every night we ate at home. If she wasn’t already on the couch, she would show up to sit on the couch with us as soon as Josh sat down. Literally.

This video is actually quite a few years old based on the wall in the background. Regardless it seemed like a great way to end. You might need to turn up your sound.

One last tidbit to leave you with… Leya was very sensitive. If she wanted to join you on the couch and you didn’t invite her on to the couch with you after a few minutes, she would walk away, with her tail down. If you called her back, then she’d come trotting back, with her tail straight up, and join you. It was adorable.

Fatigue

It’s not just being tired. It’s not just a long day or not sleeping well last night. It doesn’t get better with caffeine. It’s exhausting. It’s heavy. Being tired can be fixed with a decent night of sleep. If you’re lucky enough to sleep well – even most of the time. The English language is worthless, frustrating, horrible, for not having a big enough word to explain this fatigue.

It’s like the steel blanket things that you are covered with for x-rays, like at the dentist, except it covers everything. Your brain is filled with this thick soupy fog you can’t see through. Like walking through layers of snow and ice or trying to run in water. Try to make a decision, I dare you. It’s basically impossible. Any decision you do succeed at completing is also exhausting.

Everything you do seems to take double or triple the necessary energy and you don’t feel like you have any energy anyways. Standing is hard because it takes more energy than sitting. Your eyes might be blurry. You mind is blurry. Are you running on “fumes”? Is there anything left inside?

But you aren’t sleepy. You don’t want to sleep, except to escape this feeling and hope that you’ll feel better after you sleep. Sleep might fix this. Sleep might not do anything. You can feel like this after 7 or 8 hours of sleep. You can feel like after being awake just long enough to eat breakfast. Or you can go a whole day without feeling this indefinable weight.

It’s carrying a burden of indescribable weight and size. Sometimes moving around will help. Sometimes sitting still helps. You never know. Food can help but then you need to make a decision to decide what to eat and it all starts again.

It’s not like leg day, or working too late, or hangover after a late night. It’s a disaster. It’s exhausting to be so exhausted. You’re drained, low, crushed. You don’t know what will make you feel better. You’re empty inside but you’re not sleepy. You search for what will help but nothing is ever quite enough.

Then you go to sleep, hope you’ll get a decent night of sleep, and wake up the next day. It might happen again today too.

And then there’s the threat of this fatigue. It’s like that steel blanket is laid beside you and you never know when someone will walk by and toss it over you, without asking, without a word.

Lego is doing this neat thing with historical location statues

The salon we go to for haircuts moved out of a dying consumerism center (a mall) to a shiny newer bright and busy consumerism center which also has a Lego store. This is important cause it’s the only reason we were in the mall. They have posted at least a dozen Lego statues about the mall along with information on the site, the time it took to build the statue and the size ratio. Like the Liberty Bell was a 1:1 ratio. Apparently I forgot to get pictures of most of the explanations of the statues and I’m sharing pictures of just a few. Side note: each model was built by a team of at least 3. Some people were “master builders.” What are the qualifications needed and the typical salary of a Master Builder working at Lego? Anyways, random blog post about Legos now continues with pictures. 

And the Washington Monument. 


Few more. Here’s the Jefferson Memorial. 

And the Lincoln Memorial. 

Then models of the Capital building, the White House and the Supreme Court building were by far the most awesome and impressive. The detail was great. Seeing the kids Ooo and wow and woah at the different models was really nice too. Cute. 

Here’s the one close up I grabbed of the White House. 

I could have sworn I took a picture of the Statue of Liberty model but it’s not on my phone so I guess I didn’t. A few pictures for the Supreme Court are next. 

And the last set of pictures is the Capital building. It’s sad I’m not as familiar with these monuments and important government buildings as I thought. I hope the children – and some of the adults – learned something from these statues. Can’t decide I prefer to call these statues or models. The picture I took of the Capital building model from above 

Random cat pictures with some words too

The other day I feel into the rabbit-hole of my Google Photos looking for good pictures of our (MY) cat that we had to put down Monday (cancer sucks for every single living creature) and in that process I discovered some fun random pictures too. For shits and giggles I thought I’d put them here. This is best described as bittersweet so skip the captions/explanations if you can’t deal with that today. Also, I think it’s time to add “crazy cat lady” to my blog tags.


Picture of Tank from at least 4 years old. He died suddenly. He was always cute curled up because he had impossibly long legs. Being half Siamese probably helped?

 


“Human, don’t question why I’m in the dryer. You wouldn’t understand.” Murphy died from cancer but it was slow moving and he was here to be the grumpy old man requesting pets on his schedule for quite a few years.

 


Murphy, Tank, and Leya: top to bottom. They are so closely together because of catnip! We determined this picture is proof that the demon inhabiting Tank’s body was too much and that’s why he died so suddenly and so young. (If you don’t get it, don’t worry. If you do get it, you’ll be amused.) I was struck by this picture because we’ve reached the point in our lives where we now have pictures of multiple cats who aren’t here anymore. Murphy and now Leya died within 6 months.

 


And this picture is like the “Old Guard” and the “New Guard”…. it’s about 4 and a half years old? Murphy, Leya, and Codex, and Parker are all here. The kittens (Codex and Parker) are now almost five. Kittens vibrate, so they are blurry, everyone knows this.

Tracking where my pain patches are going

For over a year now, I think, I’ve been using the Butrans pain patch as part of my regular prescriptions. It has been life changing, literally. You apply/reapply this patch once a week. It stays there. You can get it sort of wet with few issues. I try to keep mine out of direct water but that can be difficult.

From the manufacturer’s website:

BUTRANS should be applied to the upper outer arm, upper chest, upper back, or the side of the chest (See Figure A). These 4 sites (located on both sides of the body) provide 8 possible BUTRANS application sites.

Personally, for me, I have to focus on my arms and back. I question if they did much work for locations on women, because breasts. Oh noes! Anyways, that’s another topic.

Because you aren’t supposed to “re-use” a site in less than 3 weeks I made this tracker or journal because it’s otherwise impossible to remember. When I was updating it again, I thought I’d share it. I actually type up the specific dates I’m to change my patch so since I change it every Monday night, the column on the left will include the dates of every Monday for many months. The left and right location columns are so that only have to write down “shoulder” or “back” in either column. It’s a little easier. I added a notes section in case you want to be able to note site reactions.

If you so choose, you can print this out or save it. (I’ve never shared a public Google doc. so I’m assuming you can save it for yourself.)

Here’s the link to the tracker.

New Patient paperwork 

I’m trying out an internist, which is different from a GP or PCP, and so I have another set of new patient paperwork to fill out. An internist is possibly more beneficial for me because of my high levels of comorbidity. Most of my medical history, medicines, and stuff, are actually already typed out into 6 pages. It’s formatted and organized. That means I don’t have to write out some stuff on new paperwork. More often though, I need it because there’s not enough room on the doctor’s paperwork. It’s also helpful because my hands will sometimes start to jerk involuntarily if I’m doing a lot of hand writing where I have to keep within specific formatting, like filling in blank lines. 

Side note: it’s interesting to see which doctors prioritize which diseases in past medical history. This doctor has AID/HIV (yes it’s a typo) but doesn’t have MS.  

So yea, this is my fun times so far today. 

Working on setup for my new Bullet Journal 

Every time I move to a new journal I make my journal a little more stream lined and I’ve learned a lot in the past journal. I think I started this October 2015 and this is my third journal. Since I’ve learned there are definitely some things better tracked long term or monthly instead of daily or weekly this journal might last longer too. 

Here’s my new one. 

Some things I’ve noticed. The elastic band closure for the notebook is wider and stronger. The paper isn’t exactly smooth but it’s very strong and sturdy. The book itself feels sturdy. I made sure to go thru and try to stress the spine evenly so the book won’t fall open to the same pages all the time. Can’t tell (yet) how to describe how it feels to write on. It handles the Faber Castell PITT artist pens well. The ghosting from the brush size pen is very obvious but not unpleasant enough to annoy me. I’ll have to check different colors of my uniball pens to see how the ghosting varies by color. 

I think I really like the grid lines. 

And the stickers came from Michaels. I bought them 50% off. Even though these are for the specific Create 365 brand of journals I think I can use most of these to add some variety to my bullet journal. 

I’ve been using a slip over the front cover pen/pocket holder thing but I might switch it to my doctor appointment tracking journal instead and keep my pens for my bullet journal in one of two other holders. The slip cover makes it difficult to write on the left side of the journal when there are pens in it which wouldn’t be an issue with my appointments tracking since I only write on the facing/right page. The green case will hold my ruler but the pens would knock around. The blue case holds pens or pencils more securely. 

They all have their own advantages and disadvantages.