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.”

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.

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.

Muffins equal happiness

So I saw a psychiatrist recently. I’m familiar with the process, I’ve done it before. And though I was feeling better, I knew it wasn’t necessarily a permanent thing and I kept my appointment. The doc said a few things that made it seem so easy, or sound so easy, which may have helped me realize a few things. I don’t know. I do know just seeing a doctor about my depression seemed to help make it not so bad. Maybe because it was my choice to see the doc? Not sure I have the answer to that question either.

Side note, the increased meds might be helping my pain too.

Anyways, after a month of a low dose of meds, I asked the doc about increasing my meds. He thought that was a good idea and thought it would help. Indeed, I think it has.

A strange thing happened today. I was talking to my husband and actually used the word happy to describe myself. Specifically I was happy muffins I had baked turned out delicious. It really is the small things, like muffins.

So yea, depression is a cold bitch. She invites herself, stays as long as she wants, does anything she wants, and primarily focuses on making you feel like shift, or maybe numb, or maybe guilty, or maybe just plain sad. That’s another reason why she’s so horrible, just when you think you know what she’s going to do, she changes it up on you…pulls something else out of the magic hat.

You have to take life hour by hour on the bad days and day by day on the good days. Until one day, you catch yourself daydreaming and realize you were just thinking about the future.

Self-medication

I think I’ve finally found the right words to explain to the doctor why I’m not so great now. The fibromyalgia diagnosis coming at the same time as the realization that I’m über sensitive to caffeine was good but also badly timed. With my asthma/allergies, I was self medicating pain, allergies, inability to focus, and fatigue with enough allergy medicine to knock out a grown man, caffeine, OTC NSAIDs, and alcohol. This also makes me assume I’m having trouble applying the right words and getting people to understand me…. So I have a typed out page of explanation of things that are bothering me or otherwise causing me additional pain, which I will provide my doctor with on Monday when we go over why she failed (?) to fill out the FMLA paperwork correctly the first time.

The caffeine was making my heart do all kinds of crazy shit but helping with focus while also helping my lungs to resist the effects of almost daily NSAIDs. The allergy medicine was helping to make the caffeine trips not so roller coaster ride esque while probably also alleviating asthma symptoms. Finally the alcohol well helping me relax so I could sleep while also numbing the pain.

Labeling the Pain

Monday – 4 days ago – I had my follow up with the rheumatologist. She diagnosed me with fibromyalgia. She also happened to deliver her diagnosis in a way that you might tell your significant other/partner that someone needs to get milk on the next trip to the grocery store. Other than her somewhat – odd – bedside manner – she’s a great doctor. (I finally know how to spell fibromyalgia. I think. I will by the end of this blog post.)

I have taken time off of work because this has rocked my world and I’ve needed time to process….and because I’ve been kicking my caffeine habit. Sidenote: It’s a little weird that I learn about my caffeine intolerance and start working on kicking the caffeine habit BEFORE I find out about the fibromyalgia and that caffeine is bad for fibromyalgia. Anyways. This is day 6 of no caffeine and the second day of not having a migraine because of eliminating the caffeine.

Looking back, I’m not sure when the pain got bad. I feel like I haven’t been myself for most of the year. But there have been a few periods where I was able to catch my breath and try to get back to normal. Looking back at my blog, April was a VERY bad month and I’m pretty sure January was too. I have had a few realizations this week but, before I get to those…. Fibromyalgia sucks. I sure as hell did not seek the diagnosis out. However, it’s not RA, or Lupus, so things could be worse! On top of that, I’m not really surprised by the diagnosis based on my general sensitivities, intolerances and food allergies.

Most importantly, I now have a label for the pain I have been experiencing for I’m not sure how long, probably close to a year. I have a label for the weird feelings or things I’ve been dealing with for over a year. Like, the days when my clothes hurt…. figured it was my allergies. Nope, it’s my brain!

Because, you see, being able to label the pain I’ve been experiencing means that I can acknowledge the pain exists. I can acknowledge the pain is not going anywhere (that sucks yup. But calling yourself weak because you’re in pain other people don’t experience is worse.). I was consciously ignoring the bad feelings and hoping they would go away. I don’t need to do that. Ignoring the pain and hoping it will go away takes way more energy than accepting the pain is there and not going anywhere. Then instead of spending energy wishing it will magically go away? I can work on making it not as bad.

I’ve done a lot of learning this week. Reading The Spoon Theory was life changing. It’s a great way to explain why some days are great and some days are total shit. You don’t get the same number of spoons every day. I shared it with a friend who has RA and she was surprised how well it applied to life. She also shared with me how she copes with pain. Acknowledging the pain exists means you can put it on the back burner and then move on with life. I like her metaphor too.

Building on her metaphor – I think this applies really well to life. Anyone with chronic pain automatically has one less burner to cook dinner with than someone without chronic pain. The severity of the pain experienced is illustrated by how full that pot on the back burner is. Really bad days means that pot is threatening to boil over, even on a simmer, any minute of the day. Good days mean there’s little threat of the pot to boil over since it’s on a simmer. But, like everyone knows, that is open flame, (we have a gas stove), so you still need to be attentive.

Now where was I? Besides distracted?

All of this has helped my sanity, but it’s not enough. Per my rheumatologist’s recommendation, I’m also trying cymbalta. Hopefully it will my brain. Finding this little bit about chronic pain and the brain helped me figure out more too. I’m still trying to figure out how much exercise is enough and how much is too much. I’ve done some reading so I know I need to start slow.

Last night is the first night of sleep I’ve had since I don’t know when where I actually felt like I got a full night of restful sleep. I’m assuming both eliminating caffeine and adding the cymbalta have helped this. Next thing to do is look up sleep stages. I think I learned about them like 8 years in a PSY 101 class. I should have a review.

Besides the exercising and doing some more learning on my own I have to find a support group. Something where I can see other people, not something online.

I will own my health.

Now I’m going to knit something light weight because my hands are tender.