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.

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.

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.

Just a regular day when you’re chronically sick

Or a day in one person’s #chroniclife. Or a typical day when you’re a professional patient. Or the opposite of a fun afternoon. Call it whatever sounds good I guess.

Left the house around 2:15 for a 3:00 appointment. Appointment is to have a very short in office procedure and see the doctor. Supposed to take about an hour total. Forced to valet because the first parking lot had at least four people circling that I saw, so there was probably more. The second parking lot was full. The third parking lot was at least a 10 minute walk and might have made me late so I was stuck going with valet which isn’t part of my routine because I like to sit in my car and have a snack before I leave. Grumble.

Check in at doctor’s office. Pay $300 between the copay and the procedure cost because my health insurance deductible isn’t satisfied yet. Wait 25 or so minutes in the waiting room. At least 20 minutes past my appointment time my name is called. Pro tip: If you have a doctor who seems to be always late, get the earliest appointment you can manage.

Medical assistant person does my vitals, tells me what to expect with procedure. (BP was good, yay!) Have problems with antibiotic and soap because of my allergies/possible reactions. Almost have a panic attack while I’m waiting for someone to come back into the exam room because I’m basically flashing back to the time an asshole doctor told me the diagnosis I clearly didn’t have, without talking to me. (He completely dismissed any of my symptoms and problems and excused me of not respecting him because I wanted to ask questions.) I didn’t want them to think I was trying to be difficult. When I realized I was near tears I recognized the panic and concentrated on breathing slowly for a minute or two. Thankfully that helped and I didn’t have to wait that long for someone to return.

Finally, 5 minute procedure is done. Get dressed. Wait for doctor to come back who, while I was there, talked to at least 2 other patients and made a phone call. I probably saw the doctor for about 15 minutes. 20 minutes absolute max. All my questions were answered and I was given a month of free samples of my med. This is a good doctor by the way. She actually called me “love” during my appointment. I have no idea if she typically runs late because it’s only the second time I’ve had an appointment with her.

Left the office, stopped at the restroom, and then left the building, ate a peanut butter cup, retrieved my car from valet ($4), and then set off home. Took about 35 minutes to get home. Traffic was lighter than I expected. On the way home I managed to miss every single gas station where I could stop to get water.  I was at the doctor longer than expected and so drank my liter bottle before I left the building. Should have bought a bottle of (overpriced) water at the gift shop. Ended up having “peanut butter cup mouth” all the way home. Home about 5:05. Soon as I got home I needed a snack before my blood sugar went any lower. The super simple procedure caused me enough pain that I’ll probably spend the rest of the evening on the couch – when I’m not doing chores. (Silly body, this pain is stupid.)

I have another doctor appointment on Thursday but it’s the chiropractor and he’s never been late.

Then on Friday I get my xolair shots and spend at least two hours at the infusion center.

Both appointments are a half an hour from home (one way).

I don’t have time to work.

Chronic illness forces you into the job you didn’t want (updated)

Some background first… Because I have health insurance through my husband’s employer I have no control over my insurance provider. As of the first of the year, our insurance changed, completely. We went from Cigna to Aetna. The Cigna plan didn’t have copays and the Aetna plan does. So on one hand, in the past after I satisfied my deductible and out of pocket (which has happened as early as March) I don’t have to pay anything. On the other hand, the Aetna premium is MUCH LESS but I have to pay every time I go to the doctor. With Cigna I could have my prescriptions (every 30 days) at my local pharmacy and after I satisfied the aforementioned requirements I didn’t even have to pay for prescriptions. Aetna also requires you to have all your prescriptions through their mail order pharmacy if you want to pay copays instead of 20% of the retail cost of the medicine – assuming I understand the insurance jargon correctly. Correction – see more below **: Aetna discounts the medicine by 20% and I have to pay 80% on the spot to be able to have the medicine that basically keeps me alive. My pain patches just cost me $372.24 for one month. Insurance saved me $69.05. I can file some kind of claim somewhere, somehow and get reimbursed some amount of money. I think?

Side note: I have a number of super expensive brand name medicines. All of them are super important for my quality of life or just straight being alive. The retail cost for my medicine that helps keep my migraines under control is a little over $1000.

Retail/local pharmacies process your prescriptions in like one to three days. It could take me over a week to get a new prescription processed with the Aetna pharmacy. Sure, it’s great that I can have 90 days prescriptions. However, I’d trade that for being able to easily ask a pharmacist questions almost any time I want without having to fight a confusing automated system that wants me to talk to it even though none of the options seem to apply.

All of this is the background for most of my yesterday. Yesterday I was making or receiving calls continually between 10:30am and about 1:30-2 pm. I had short breaks to eat. I had to call the Aetna pharmacy twice. I had to call the Aetna FSA twice. With each instance/department one phone rep was very helpful and one was the complete opposite. (One of the Aetna pharmacy phone reps had never heard of some asking to provide the pharmacy with their drug allergies and the supervisor I talked to was clearly wondering (“Why in the hell am I talking to this woman about this elementary shit?” She was not saying it very loudly.)

Anyways, I also started calling my doctor’s offices to provide new insurance and request refills on the meds I need soonest. For example, I used my last pain patch Tuesday night and they last 1 week. This means I have to make sure the prescription is sent to the Aetna mail order pharmacy but I also need to have a prescription for 30 days sent to my regular retail (now secondary) pharmacy. I probably have to do this four different medicines. All of them are at least a few hundred dollars each, at least the one over $1000 as mentioned above. I think I might also have to file claims for all of those medicines too and you can’t do that online.

Side side note: Mail order pharmacies, as well as FSAs that reimburse instead of allowing you to use the money directly assumes a certain amount of status and privilege. If we didn’t have credit cards I’m not sure how we’d pay for my meds this month. Also, this is why lifetime limits on health insurance benefits are very very very bad. I will have to get another medicine from the Aetna Speciality pharmacy. Depending on if you (if anyone even reads this) are an able bodied person who takes few medicines, or someone with a disease like me which requires extra special medicine, you may have never even known speciality pharmacies are a thing. I need to obtain my MS medicine this way. The last time I checked, in about a year and a half, maybe closer to two years, 90 days of my MS meds (Tecfidera) went from around $15,000 to almost $20,000. Assuming $20,000 that’s $80,000 for just one year of one medicine. You would think that pharmaceutical companies would want restrictions on lifetime benefits to continue to be illegal so that they can continue to make money off of their medicine.

So, all of these changes to my insurance and pharmacy options turned into working. I basically worked half a day and I ended up in pain from sitting still at a table for that long (not even in a hard chair). I also ended up with a tension headache. I didn’t ask for this job. No one pays me for this job. Sure, you could argue that I’m ultimately paid by my health being better – except that all of this costs me pain as well as physical and psychological energy that means I have less energy for other things. So it’s like I’m paying twice.

It’s still a job, regardless of what anyone says. It’s a thankless job that most people do not truly understand. It’s a horrible stressful job because it’s all full of red tape, corporations ultimately only worried about the bottom line, as well as doctor offices where often all the employers are overworked – and likely underpaid just like me? It’s even often an anxiety inducing job.

And all of this work doesn’t even account for the four to six other doctors I have to call and request refills from and or provide my new insurance too. I have a great deal more work to do in the following weeks

I didn’t ask for this job and I can’t quit it. I never have a day off. This is every day of my life. It doesn’t really have set hours either. (One of my doctor’s techs returned my phone call at 7:30 this morning. That’s outside of business hours.) This job doesn’t allow me to form any sense of community or connection and make friends. Basically, I’m a professional patient. Being a professional patient doesn’t have a clear job description. I can’t say that’s not part of my job. This job provides no sense of fulfillment because I have helped someone or created something – or any other reasons a job might provide you personal fulfillment – thereby improving your mood and quality of life.

It’s a horrible, stressful, and thoroughly unpleasant job and I wouldn’t wish it on an enemy and now I’ve spent almost an hour writing a blog post about an unpleasant day instead of doing something fun like playing Civ VI. This is why sometimes I just want to crawl in a dark corner, hide under a blanket and try to escape from the world.

Maybe in another blog post I’ll talk about all the paperwork and records organization I need to do on my own time that’s another part of my job as a professional patient.

Correction and updated added after I picked up some of my meds at the pharmacy. I still need to get one more filled and possibly pay over $800 for it. Also, Aetna lies. The 20% discount isn’t true for all medicines. I’ll save you the math. On the above mentioned pain patches, I was discounted 18.5% from the total retail cost. 20% would have saved made the final cost around $368.

Then I called Aetna RX again to try to get more information to understand this crap, despite my coverage information/paperwork saying that the cost is discounted, what I actually pay in a retail pharmacy is 100% of the “negotiated” cost. Negotiated means it can change whenever they want it too. It’s like my MS meds I mentioned earlier. Also, it takes 3 business days before they can “see” prescriptions requested by doctors but the phone rep couldn’t tell me why. We probably get to pay $800-900 for 30 days of my medication for migraines because of this “3 business days” BS.

To share how I self-advocate at the doctor?

I’ve been debating and pondering and contemplating how to share the things I do which come down to advocating for myself when I’m seeing one of my many doctors. Is it even worth doing? It’s different ways I cope with all the doctors I see and no one having anyone else’s information unless I make sure they send it. I have typed up information I provide to new doctors and old doctors periodically. I’ve just started using a journal to keep track of appointments. I even give my doctors lists of all my doctors – with at least their phone numbers.

There’s lots of little things I do too that are advocating for myself. Doctors need to be able to be willing and able to answer my questions, or at least most of them.

Should I make a series of blog posts about advocating for yourself, as the patient, with medical professionals?

Vitamin B6 toxicity

Recently, one of my doctors actually listened when I talked about how many B vitamins I take. Side note: I noticed it helped my energy and fatigue, also B2 can help with migraine prevention and folate can help with hormone stability but I have limited understanding of those.

Anyways, my doctor checked folate and B6 levels and found that my B6 levels are toxic. (I didn’t get the exact numbers, yet.) Most doctors say that because B vitamins are water-soluble you’re fine because your body will dispose of the excess. Except, not everyone’s metabolism is the same so this isn’t actually true. Maybe it’s okay on average.

I’ve never had my folate and B6 or anything else besides B12 levels checked. I have no idea how long I’ve been “toxic” in B6 or if I’m deficient in anything else. I know my B12 levels need to stay high and I know my body likes it when some other vitamins are high too. (High in the normal range.)

B6 toxicity can do lots of different things.

From Mayo Clinic:

Vitamin B6 may cause abnormal heart rhythms, acne, allergic reactions, breast enlargement or soreness, changes in folic acid levels, decreased muscle tone, drowsiness or sedation, feeling of a lump in the throat, feeling of tingling on the skin, headache, heartburn, loss of appetite, nausea, rash, recurrence of ulcerative colitis (an inflammatory bowel disorder), stomach discomfort or pain, sun sensitivity, vomiting, and worsened asthma.

Over this year I’ve had my migraines and asthma change. I’ve also been having unpredictable and erratic GI symptoms. I’ve had a difficult time with PT and trying to build muscle strength, more so in the last half of the year than the first half of the year. I have no clue at all whatsoever if these problems are because one or more of my diseases/disorders have changed or if it’s the B6 toxicity, or BOTH.

In the last month or so I’ve had some minor problems with balance too. I wonder if it’s the B6? Or my MS?

Also, I have no idea how long it takes B6 to come done.

Other helpful looking links (I didn’t look too close at these though)…

http://www.livestrong.com/article/317889-vitamin-b6-toxicity-symptoms/

http://www.easy-immune-health.com/vitamin-b6-toxicity.html

http://lifewithb6.blogspot.com/2015/10/dont-take-b6.html

November 2016 My NaNoWrimo

How did my NaNoWriMo go? I wrote almost 28,000 words. I’m very happy with what I accomplished but I am a little sad I didn’t “win” with the 50,000 words. My month was also way crazier than I wanted/hoped for.

Accomplishments:

  1. I wrote 27,871 words of a novel. It was not my original idea, I changed my mind and then did not have enough time to do much outlining. That’s 27,871 words I’m still willing to look at and add to in December instead of just wanting to ignore the hideous conglomeration of ideas that may or may not belong together.
  2. I finally have my own personal set up in Scrivener for novel’ing, especially during NaNoWriMo – or when I don’t have that much outlined. I have to figure out how to make it a template and also update the character templates with more information/options.
  3. I started with clearer more fleshed out characters and what I wrote is less of a disaster and more of the start of something I can manage to finish.
  4. I can write 800 words a day fairly reliably regardless of how crappy or tired or exhausted I feel, as long as I have a decent outline or an idea of where to start.
  5. Stayed sane and didn’t freak out about my trailing word count.

What else I did in November:

  1. Attended a Lindsey Sterling concert. She’s a fabulous performer. She’s intelligent, funny, adorable, and down to Earth. She’s great with a violin too. I recommend her youtube channel for writing. Great music and something you can also watch if you happen to get stuck or need a break.
  2. Saw Dr. Strange. It was still a typical Marvel movie and therefore good and worth watching again because it was entertaining. However, I think the Dr Strange character was flat compared to other heroes in the Marvel universe, and other characters could have also had more depth/detail. I feel like the characters suffered because they needed more screen time for all the neat special effects.
  3. Saw Arrival. Fantastic movie! I cannot currently remember the title of the story it’s based on but I have it on kindle now and need to read it. I’m pretty sure Arrival inspired me to add some things to my novel. (I can’t remember now.) I recommend this movie, especially because it had a female character trying very hard to keep the world from going to shit (further).
  4. Took one of our cats to the vet. Discovered she has a tumor pressing on things in her neck. This is not good news but it’s probably not cancer at least.
  5. I had five different doctor appointments that were all specialists. In my experience specialist appointments always take longer. One appointment took 4 hours from the day – but was very productive. Another appointment took less than an hour from the day but was horrible and stressful and I cried in the car. (not going back there) There was also an appointment that involved receiving trigger point injections in my neck – much needed – but resulted in no computer use that day.
  6. I had two physical therapy appointments. Those last an hour.
  7. Learned the counselor I’ve been seeing for therapy for at least the last two years is on medical leave until further notice. Well, I had a lot of shit happen in October and was really looking forward to the counseling appointment I had scheduled the first week of November. Scheduled with a new counselor who may or may not work out for me.
  8. I had two chiropractic appointments. These were my first two ever appointments with chiropractor (and receiving acupuncture).
  9. There was, I think, two different visits to labs for blood work.
  10. There was getting a haircut and some shopping too.
  11. Read some comics and finished reading Ready Player One. The book was not amazing but it was solid. I enjoyed the world and plot, and the author’s attention to small details. I recommend it.)
  12. I dealt with six different migraines or headaches. None were severe so I would have averaged “losing” half a day and not being able to accomplish much. Severe migraines are losing 1 to 4 or more days to pain management.
  13. Went to knitting group twice because socializing is health, at least in small chunks and getting out of the house for something besides going to the pharmacy, grocery store, or doctors is vital to your sanity.
  14. I finished a number of knitting projects, including a baby gift for a previous coworker. (Good people receive hand knit gifts.)
  15. I re-visited/re-tried a coffee shop that’s not $tarbucks and managed more than one writing session outside of the house. yay!
  16. Of course there was Thanksgiving.
  17. And how could I forget Election Day and the rest of the week and being sad and scared about the unknown coming for the next who knows how many months or years. Will I lose my health insurance? Will I lose any rights or access because I’m a woman or will I be safe because I’m white (and married)? Will any of my friends be in more danger because they are different?
  18. Then there was a few days with major weather changes that affected my ability to focus because of causing me more pain and other similar problems.
  19. Started a few new knitting projects too, including some gift projects that aren’t on ravelry yet. (I should fix that.)

So, that was some exciting stuff, some totally normal stuff, and eleven medical/health related appointments. I had wanted to keep this month clear of doctor appointments and I hoped for less headaches. Neither happened. Basically, I had wanted no more than two appointments each week.

After four different doctor appointments this week, time spent with a friend, and time spent with my husband outside of the house (dinner, shopping, etc.) – I guess there’s no surprise that I am TIRED. Fatigued. Exhausted. Sore. I plan to spend December focusing more on knitting. I have three (smaller) gift knits and I want to swatch for my first adult sized sweater (for myself!)

Living the Chronic Life: You don’t understand

This isn’t nice and shiny. This isn’t about thinking positive. It’s not about Internet memes with serene landscape backgrounds. I’m not looking to sugar coat anything because this is life. Life isn’t fair and this is my life. Mine. I don’t care what you think or what you want to say, you probably don’t understand because you haven’t had my experiences. I don’t pretend to understand your life. I’m trying to be realistic.
You can pretend, you can try to empathize but you don’t get it. You don’t truly get it to the very core of your being. That’s where it matters. You can’t understand how soul crushing it can be to stop and think about all of the opportunities and experiences and potential I have lost. I’ll never get it back.
I’ve had my dreams and life plans taken from me. Stolen. My identity has been changed. It feels like it was overnight but really it’s been very slowly, excruciating so, over days and weeks and years. Some days I feel constantly reminded that I can’t do what I went to college for. I have 2 college degrees but can’t work like I planned to. I had hopes and dreams. I’m not talking about making millions here, I’m talking about wishing I could have my dream job where I’d be helping my community. Helping people. My ‘plan b’ was teaching in a community college. Instead, I’m a professional patient. Sometimes I think about what teaching would be like and I freeze up because I don’t know how much I remember from my education, or if I could successfully do something as simple as answer a student’s question.
No one asks to be sick when they grow up. No one says going to the doctor is fun, I want to do it more often! Being chronically ill is like a full time job that never has the same hours or work week to week. You never know what you’ll be doing, when, or where you’ll be going. You don’t get paid. Your life feels like it’s controlled by someone else, something else. Being a professional patient is difficult. No one is prepared for you. You have to develop your skills as you go and you must for your own survival. You’ll talk to doctors who don’t believe you or think you are seeking drugs.
 I don’t want to take these pills. Naps are nice but not having to nap is nice too. I don’t want to nap so much. I want to take a walk without worrying if I’ll hurt for three days afterwards. I would like to help people without endangering my health. I don’t want to be in pain every day for the rest of my life. I don’t want to be depressed. I don’t want to be anxious about whether time out with friends will cause me extreme physical pain for days and days afterward. I wish I could work instead of sitting at home watching Netflix. I wish I could receive a paycheck.
Some days I’m not sure I even know who I am anymore. Here in America, most people identify by what they do. Jobs or careers are important. Making money is important because it allows you to be independent. I cannot make money. I can only do so much in one day. Going to the grocery store is hard. Driving across town is difficult and painful. On the wrong day or a bad day, just standing in the kitchen and washing dishes is practically impossible.
My days are split up by eating, taking pills, maintaining my body with stretches, and sleep. Chores or doctor appointments are accomplishments. Walking out to retrieve the mail from the mailbox is sometimes a great achievement. Better days are no migraines or not needing any extra pain meds.
My sense of identity, my feelings, my memories, my cognitive and physical abilities – all of these things were changed without my permission. I have very little control over how I’ll feel when I wake up tomorrow morning. Or the next day. Or next week. Let alone next month.
You don’t understand. Not really. Not unless someone or something ripped apart your life, dreams, and identity and patched it back together in whatever haphazard way she, he, or it choose. If your life has been changed by some horrid trauma or event that you deal with every day and you can never really recover, then you understand.

Tips on How to go to the Doctor Part 2

This is a follow up. Anyways. Here’s part 1. This list is a little more in depth and possibly for people who go to the doctor more often and (probably) take more medicines than ‘normal’ or ‘average’. This list also covers points that I can almost guarantee will make your appointments less stressful.

11. When calling your doctor’s office: If you are making a new appointment, say something like this: “Hi, I am an existing patient and I would like to make an appointment.” If you have a question: “I am an existing patient and have a question (blah blah blah). Same goes for new doctors/being a new patient. “I would like to make a new patient appointment.” If you have a specific doctor in mind or see a doctor in a large practice, mention/ask for that doctor.

12. Keep a neat list of all of your medicines. By neat I mean everything is spelled correctly and it’s legible. It’s best if you can type and print out the list, but if that’s not an option, then hand write it. This includes everything you swallow, apply, and sometimes use. I would suggest a total of three to four lists.

  • prescription medicines you take daily – maintenance medicines
  • over the counter (OTC) medicines/supplements you take daily – again, maintenance
  • medicines you take/use as needed – this may or may not also need to be split into OTC and prescription

13. Keep a record of all your allergies. Drug, food, chemical, etc. Tell your doctor all of them. Let your pharmacy know. Artificial colors are especially tricksie hobbitses.

14. Keep a record of your health history. This is where comorbidity comes into play. People are kind of like soup. When you have different health problems then medicines might not work as the doctor expects. The more ingredients, the more complicated the soup’s flavor. Make this list as extensive as you need it to be. It’s also to help you remember. This sort of leads into number 15.

15. Keep a list of your doctors. This is probably more useful for your own sanity. My own list is doctor’s name, type of doctor, practice name (if relevant) and office phone number. I give the list with new patient paperwork but otherwise it helps me out.

16. You are allowed to ask questions. Ask questions. Keep your questions relevant to the appointment.  If you are seeing a doctor for specific acute symptoms, try to limit your conversation to just those problems/symptoms. For example, if you (think you) have a sinus infection, your sore elbow isn’t relevant.  This leads us to number 17.

17. If necessary have a list of questions or points you want to make sure are covered during the appointment. This helps you remember and could also help your anxiety. Make sure your questions are to the point. This is easier to say than it is to actually do, believe me, I know! Sometimes I give the tech./assistant/nurse the list of my questions and sometimes I keep it to refer to once the doctor shows up. It depends on the doctor and my comfort level.

18. Politely ask someone at the doctor’s office to make a copy of your information and ask to keep your original. They won’t have a problem. Printer ink is expensive!

19. Expect to review your current medications at every appointment. If you are not prompted for the information, then report all changes in your medication.

19. Remember that your doctors are a team and you are part of that team. Teams work best when everyone is working together towards the same common goal.

20. Optional: Have a copy of your latest lab results. You never know when you might want to refer to them. It also helps to know how long it’s been since the last time you had blood work.

21. It’s ok to be nervous and also remember doctors are people too. But get help if your fear or anxiety is interfering with your life and or your ability to go to the doctor. I used to get panic attacks driving to doctor appointments.  But now, for the most part, new patient appointments are a lot like the first day of school. I went through 18 years of school and every single semester I still had first day of school jitters up to my last semester of grad. school. It’s also okay to be afraid –like if you’ve had bad experiences with doctors but your fear shouldn’t be incapacitating. Maybe ask a friend or family member to go with you to the appointment, especially for new doctors.) Personally, I’m afraid of any new ER because of a horrible experience I had at an ER a few years ago. This trauma still affects me and makes me nervous at any ER visit. Also, I know multiple people who have PTSD because of experiences with medical professionals. If you cannot develop a relationship of trust with any doctor, it’s okay to let that doctor go but, remember, get help for your anxiety and fear if it’s interfering with your ability to even make appointments to go to the doctor.

If you apply any of these points to your doctor appointments then your appointments should be less stressful and less traumatic. Doing these things should help you to feel more in control at your doctor appointments and this helps anxiety.

Whirlwind

It’s been a four day week (here in the states where Independence Day was Monday) and it’s been an absolute whirlwind of doctor waiting rooms, exam rooms, traffic lights, grocery and pharmacy. On top of that, trying to stay out of the heat, and deal with new and different types of pain in new and different types of places. Like eye pain and chest pain. Not fun. Extra phone calls have been necessary too.

Prescription change I need to call my immunologist about Monday. Another new doctor I need to make an appointment with. I have to make sure that this is “just” my asthma no longer well controlled. You know, just asthma. My immune system is totally not doing its job right now.

If I was “normal” I’d get drunk tonight but that won’t help anything. I’d feel worse in the morning, so much worse and if I was really unlucky I’d end up with a migraine or something comparable. Three doctor appointments this week, all three ran late. I have three more doctor appointments next week.

Oh yea and we won’t even talk about the prednisone taper. At least it’s only five days. I am in such desperate need for some kind of fun random thing. A small surprise, or an afternoon spent somewhere new or a kitten. A kitten would help!

Multiple Chemical Sensitivity

A while ago I mentioned multiple chemical sensitivity to my immunologist and he kinda just rolled his eyes at me. At that point I had not chased down any credible sources to explain multiple chemical sensitivity so I just moved on. It doesn’t help my case that a lot of good research for chronic diseases seems to occur OUTSIDE of the US.

Since realizing I’m sensitive to SLS – common in toothpaste – and apparently developing a sensitivity to the antihistamine in my nose spray and maybe also the ingredients in my eye drops, I’m thinking I need to revisit this. This means I need to visit Google Scholar which isn’t easy but the best way to find a credible source. The biggest problem I’ve had in the past is finding sources that aren’t 15-20 years old. I’m putting all this here so I can refer to it later since I will likely forget.

This looks like a great source but it’s behind a pay (subscription) wall.

This is an excellent source (pdf link) but rather hard to read. Checking out the references here led me to another way to search: “Idiopathic environmental intolerances.”

I’d love to read this article: Idiopathic environmental intolerances (IEI): myth and reality but you have to pay $35.95 to read it and it’s from 2001 so maybe it’s not as useful as it looks.

This one looks useful but, again, pay wall: “Multiple Chemical Sensitivity Syndrome (MCS) – suggestions for an extension of the US MCS-case definition

Another one behind a pay wall: Sensitivity-related illness: the escalating pandemic of allergy, food intolerance and chemical sensitivity. This lead me to finally remember to look up toxicant induced loss of tolerance.

Other definitely interesting things I stumbled on:

Idiopathic Environmental Intolerances (IEI): From Molecular Epidemiology to Molecular Medicine

Now THIS is interesting: “The Quick Environmental Exposure and Sensitivity Inventory (QEESI) is the most widely used screening instrument for multiple chemical intolerance. Coupled with a comprehensive exposure history, it is useful in diagnosing TILT. Researchers and clinicians use the QEESI to document symptoms and intolerances in exposed individuals and groups in whom TILT is suspected. Individuals find the QEESI helpful for self-assessment and screening.I’m going to print this out and take a look at it today. Except my low on toner printer is finally out of toner. (Thanks to amazon I know I bought that cartridge in May 2011 – graduated with my masters in Dec 2011.) Anyways. Maybe I’ll schedule a visit with my immunologist sooner than it’s time for my regular followup.

And there’s this little “book” too: “TILT – A New Class of Diseases: How Exposures to Chemicals Are Undermining Our Mental and Physical Health,”

My brain is tired now but this was way more fruitful and productive than I expected.

edit:

Another interesting PDF. Australian Government Department of Health and Ageing, Multiple Chemical Sensitivity: identifying key research needs

Odd article that I should probably reread. At first look it doesn’t seem objective or I’m just uncomfortable with the words “real disease” and “fake disease.

edit 2:

Links to the book “Chemical Exposure: Low Levels and High Stakes” and here’s the direct link to the PDF. I printed out the chapter about diagnosis and treatment.