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)…




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.


  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.


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.


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.

Observations on my eating and diet

All related to health and stuff.

Noticed recently that I eat more when I’m in enough pain that I need to take additional pain meds. (Wouldn’t it be nice to see the numbers on calories burned for people who aren’t always in pain? Seems like being in pain must burn more calories!) On top of that, I realized just this morning, that if I don’t feel well at all – no mental focus, all the fatigue, enough pain that standing more than a few minutes might be an issue – I could add more – then I don’t want to actually make myself meals. In fact, I don’t even want to use the brain power to even think about what kind of meal to prepare. Perhaps I’ve forgotten that your diet is part of your self care? If I don’t assemble a meal then I snack. I’ll snack all afternoon instead. When I do that it’s difficult to keep track of what I’ve eaten. Anything that resembles a meal is way easier to keep track of – even just mentally through the day. This seems like the better option compared to just grabbing a snack instead.

My diet is already difficult because I have to balance limitations placed on me because of food allergies, food intolerances/sensitivities that can be damn near deadly, gastroparesis, migraine triggers, trying to lose or at least maintain my weight, and now PCOS. MS has its own set of dietary recommendations and only some of those are similar to the recommendations for fibromyalgia. Avoid these foods, eat some of those foods, etc. etc. One health problem says eat low fiber, another health problem says eat high fiber. Low fiber wins. For example, I can’t not eat rice or potatoes. It’s just not happening. If I followed all of these diets I’d eat nothing but baked chicken and uh? Well I don’t even know. I’d hate my life. Anyways.

I will be making myself consider whether I want to develop a list of meals – right down to how many chicken nuggets I would need – for when I don’t feel well and can’t summon the mental focus to figure out what to eat. Do I want to spend the time and energy on this or do I just want to try a little harder when I’m making food for myself? I also need to think out and actually make decisions more often. That makes no sense but here’s what I mean. I cannot eat dinner (The dinner that my awesome husband makes that will be way more tasty than chicken nuggets or fish and chips from the freezer that might be an easy alternative.) late if the dinner is higher in fat because then my stomach spends most of the night digesting it. This is especially important if any of my health problems are (currently) aggravated or flaring. Maybe, when I can stop and make these choices the flares of pain/fatigue/bloating/nausea or any of the other things that might happen to make me feel crappier than usual, won’t last as long? Not sure if I want to actually hope this to be true. I imagine it’ll help only some of the time.

Also, I had an epiphany related to my muscular problems and my stomach. Had this epiphany at 4 am after I woke up from coughing and started refluxing food so I crawled out of bed for a bit. All of your muscles are part of you, and everything really is connected. I have a great deal of trouble with my muscles not wanting to work at their full range of motion. My eyes won’t focus out after I’ve spent a few hours knitting. Muscles that aren’t regularly stretched do actually seem to get shorter (and tighter). I wouldn’t be surprised if my muscle problems are what’s causing the gastroparesis to flare up.

tl;dr: I bet stretching helps my digestion more than I can even imagine. I will try harder when planning food choices when I’m alone and eating for one because maintaining your own personal diet – with variety – is also part of good self care. And I’m not going to stop eating ice cream or chocolate, but I do want to try drinking more low fat goat milk.

I will welcome our nanobot overlords

Someday we will have nanobots and you won’t have to wait for your body to get over a cold. The nanobots will fix it. Everyone’s immune systems and bodies will work so much better but then, there will be a nanobot uprising. The nanobots will eventually take over because they have infiltrated everywhere. Except some people will welcome the nanobot overlords and become human conspirators in the great nanobots war. Finally, the human conspirators, all the chronically ill and disabled who cannot be fixed by human doctors, will rise up and rule all the world.

*Inspired by a conversation with my husband this morning

Tips on how to go to the Doctor

As I’ve spent more and more of my time going to different doctors I’ve realized how much people don’t know about how doctor’s offices work. Also, different doctors or practices obviously have different procedures. As of the last few months, maybe even the last year, I now try to do certain things when going to the doctor. It’s probably why I’ve decided to also refer to myself as a professional patient.

I find lists are easier to read on the Internet. For the most part these are in no particular order.

1. Give yourself enough time to arrive and have time to park, depending on the parking situation. Especially give yourself extra time if the location of the appointment is unfamiliar.
Example: Some of my doctors are in a hospital office building with valet. The parking is so ridiculous valet is the only option. I try to give myself ten minutes because I don’t how how busy valet is.

2. Try to get there at least three minutes before your appointment time. Five to ten is better. It takes a few minutes for the person at the front desk who checks you in to let the person who will come get you that you are here. If there are four appointments before yours and those four people arrive in the waiting room at their appointment time and it takes five minutes for the nurse to come get them, you might wait an extra 15-20 minutes because of that alone. This leads into number three.
There are other reasons too, like maybe you have to fill out paperwork. New patient paperwork obviously takes more time.

3. Doctors can only see patients as fast as their nurses/assistants “check them in.” When you go back to the exam room the “nurse” is going do any number of things: check your vitals, gather information about your visit or changes since your last visit, and confirm there have been no changes in your medicine. This takes time. It will probably also take time if they are new at their job/position. This leads me to number four.

4. Tell (all of) your doctor(s) about all of your medicines. It doesn’t matter if they are over the counter or something you don’t take every day. This is very important. If you don’t tell your doctor all of your medicines, vitamins, supplements, and other over the counter “things” you take, how can you expect your doctor to help you? Basically this can be summarized into two words which leads me to number five. If you can’t remember everything, it’s okay to make your own list of your medicines, supplements, and anything you take as needed. You can provide this list to each doctor. If that list is also organized and everything is spelled correctly, your doctor will really appreciate it.

5. Be honest with your doctor, nurse practitioner, physician’s assistant, medical professional. If you aren’t honest then they aren’t working with all the information. What’s that saying about assumptions making an ass out of everyone? Honesty leads me into number six.

6. Remember that everyone’s day is always easier and more pleasant when everyone you meet is respectful and courteous. The people working at the doctor’s office do realize that a lot of people are stressed or not feeling well when they arrive. Sometimes the people at the front desk are rude. It happens. There’s only so much you can do about it. However, if your doctor is rude or disrespectful to you, try to find another doctor. Your doctor should respect you and listen to you. This is how you can build a relationship with your doctor and learn to trust the advice and “orders” your doctor provides you.

7. Most doctors will call you to confirm your appointment. If you don’t get a confirmation phone call, email, or text message, you might want to call and confirm your appointment. Also, if your doctor wants you to follow-up then there is a reason.

8. Don’t put off scheduling any appointments, that way you have more choices for when you’d like the appointment. New patient appointments are different from regular appointments and take extra time. Make sure to not procrastinate scheduling with a new doctor because you may even have to wait for months before you see the doctor. If your doctor is often running late (for whatever reason) it might help to schedule appointments earlier in the day.

9. Most doctor offices prefer that you call and let them know you are running late. However, past a certain time frame, they might request you reschedule. Some doctors will make you pay. In my experience, most doctor offices don’t mind if you are 5-10 minutes late, especially if you call ahead and are respectful and courteous. What to do when the doctor is late varies.
Example: One of my doctors has a sign in the waiting room requesting that you talk to the receptionist if you are waiting for more than 20 minutes. However, my neurologist runs late for varying amounts of time on different days. I realized, eventually, that she runs late not because she’s disorganized but because she doesn’t rush her patients and sometimes there are a lot of questions!

10. Finally, never be afraid to “fire” a doctor because that doctor is not listening to you. Just be warned, this is not the same thing as you not listening to your doctor because they are saying things you don’t want to hear.

If you think I missed something, feel free to say so.

Being reminded of what you wanted to be…

I had a realization earlier today. In the past I have paid attention to current events, to some measure, regularly. Lately I have avoided current events, preferring to live in my own little bubble. This has been for a number of reasons. One of the reasons is because reading more about social problems reminds me that I cannot be what I wanted to be. I earned a Master of Science in Applied Sociology because I wanted to contribute to making the world better for people. You know… reasonable goals… world peace is a really outrageous goal.

Because I now cannot work, or volunteer and have a great number of issues with focus and concentration I have yet to find some way to have a purpose in life outside of living day to day. Everyone says that if your job is something you truly enjoy then it won’t be work. (or however the words go)

What if you can’t work and

you do something and manage to spill a mostly full glass of water over your lap, laptop, the couch, and a few other things.

Wait, what? Where was I? (Besides, on another computer in another room a few hours ago.) I don’t know where I was going with this now but I don’t want to throw away this blog post either.

I know that my chronic illnesses have seriously affected my life in ways I haven’t yet figured out. Maybe this means I’m still trying to find a purpose in life beyond being a wife, cat mom, knitter and MMO player, as well as a professional patient. Maybe there’s something else I’ll come up with. It’s pretty obvious I don’t know where to go from here.

Beyond recognizing that this is a sad but important realization to have. I just don’t know what to do with this information.

Gastroparesis: Sometimes you know more than your doctor

(American) society still seems to have this thing where doctors are revered and assumed to know this amazing amount of knowledge about things no one else understands (except on tv). It started hundreds of years ago with licensing and membership requirements to be able to restrict people who wanted to be doctors and it still hangs on… even though medical care in this country isn’t as good as other similar countries. Obviously the licensing is important and needs to be required. It offers protection. Not many people understand they must be honest and open with their doctors. Not many people understand that doctors should be willing to respect their patients. Doctors are not omnipotent gods.

All that said, people with chronic illnesses can end up knowing more than their doctors… or anyone they interact with who is a “medical professional”. Yesterday I explained gastroparesis to two different people in a medical field. The first was a dentist… I can completely understand a dentist not knowing about a GI disease but it’s still weird to have to explain. (See above.)

The second person was a dietician. I explained what my GI tests had found and in front of me she turned around to her computer and googled Gastroparesis. She printed out information from one site and then went over it with me. She kept on even after I realized it was a print out I had at home that I’d read through. She ignored the things I said like:

Information on gastroparesis varies between sources.
There’s only so much my doctor can help with because some things I just have to figure out on my own.
I needed lifestyle changes, not just diet changes.
Gastroparesis makes exercises difficult and problems with pain and fatigue make exercise harder.

Mostly she was happy about my weight loss. The weight loss I’d achieved because the gastroparesis limits how many calories I can consume at one sitting/in a day. One she was so happy was because she has to follow FDA guidelines. Guidelines that are for healthy people people not like me… people without chronic diseases that have no cure and aren’t caused by obesity. The only thing the dietician really helped me with yesterday was a little bit more understanding on how to approach monitoring my calorie intake – and how much fat, protein and carbs I need. Now that I think about it the only reason why I want to see her again is to see her response based on my additional weight loss…. I still can’t eat as much as my recommended calorie count for a day, so my weight loss will continue. (Hopefully I won’t add it back on later.)

The medical field in this country needs to change, but because our government’s views on medical care access are based on how much people deserve instead of recognizing that medical care access is a human right, we still have very far to go. This should also include changing the relationship between doctor and patient. People need to learn to advocate for themselves, which isn’t the same as arguing with their doctor that WebMD knows more. We need to learn to value our health and know that sometimes lifestyle changes are necessary.

Life is intense: Another medical post

Earlier today I was hit with a realization, a moment of clarity if you will. I realized how much I have gone through in — less than a month — and actually had to sit down under the weight of it all. And that was only in terms of the doctor appointments, procedures, and tests I’ve had to deal with. It didn’t include fun things like brunch with a bunch of good friends or the wonders of FaceTime.

All within the last few weeks I’ve gone through multiple GI tests including an endoscopy, a multiple day “study” to check my stomach pH and see if I really am having acid reflux, and a gastric emptying study. All of these provided useful but slightly conflicting information. I have collected yet another diagnosis. I don’t want more diagnoses but it seems, lately anyways, that answers bring diagnoses.

Because of my (new) gastroparesis (a word that my browser does not recognize), I have to adjust my diet again. I have to relearn how to eat. In some ways I started to feel better rather quickly once I started adjusting my diet. However, there’s a pretty steep learning curve to relearning how to eat at the age of 34. There are now more foods I am supposed to avoid. Before this I had a very restricted diet because of my allergies and intolerances. Now, I can’t think about the restrictions or I want to scream.

But that’s not all. I also went through an EMG “of my upper extremities” which just means my arms had electrodes attached to muscle groups and then needles poked in those muscle groups. Thankfully my doctor who performed this test is very gentle. Then yesterday I spent five hours with a psychologist going through neuropsychology testing. Five hours. You cannot even imagine the level of brain dead I was by the time I got home. The testing was mentally exhausting and also depressing when I stopped to think about all the times I struggled or ran into a (metaphorical) brick wall. Then there was also the back and forth to my GP doctor’s office for an infection. Because when you’re sick all the time, getting “normal sick” is even more difficult. And thankfully the allergic reaction to that antibiotic was not anaphylaxis that landed me in the ER. (Been there, done that, already have the tshirt.)

Yesterday, I decided any time I have to fill in the “occupation” blank on a doctor’s forms I’m going to say “professional patient.” It’s exhausting keeping up with all my doctors, appointments, and keeping my own medical records up to date. I need to find a way to make this a job where I can also provide doctors with feedback of their office and procedures.

I’m scared that I’m going to still load more diagnoses on top of everything else but I’m trying very hard to stop myself from falling into that deadly cycle of thinking. I cannot get stuck thinking like that. Still though, I wonder what a “normal healthy” person would do if suddenly faced with the amount of doctors and appointments that I’ve been dealing with. Every appointment meant sitting (or standing or pacing) in a waiting room and having little control over a number of events. You think it’s bad to sit waiting for a doctor for 15 minutes? Fifteen minutes is actually good! You think it’s annoying to have to go to the doctor? Try having two different five hour tests in a two week time period.

Sometimes I wonder how I deal with it all. I know my friends help so very much. My cats and my husband help more than I can really fathom…. but I also spend a great deal of time alone. Anxiety and depression continue to be very real and scary problems for me. I have no idea when “things” will “calm down” again. At this point in 2015 I’m happy I haven’t been to the ER (yet) this year. I really hope I can find some kind of normal in the next few months. Normal is having nothing out of the ordinary (health wise) happening in at least 2-3 months. That means nothing that I don’t already have a plan for coping with.

I’ve finally stopped asking “Why me?” but now I find myself asking “Don’t I have enough already?” It’s intense and overwhelming and the average person probably cannot even begin to imagine let alone actually understand what it’s like to live as someone with chronic disease and chronic pain.