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.”

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.

New Patient paperwork 

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

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

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

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?

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!

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.