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.”

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.

Writing Advice for Chronically Sick People

Everyone likes writing advice. I would bet every single published writer with a presence online has been asked about how to write or how to be a writer more times than they can count, or remember, or forget.

What’s been impossible for me to find advice for is writing and writing goals for people who cannot write every day or cannot write a lot every day because of their health. Finally, I realized, after months of reading online and trying to make myself fit into someone else’s routine, that the only reasonable advice is:

Find what works for you.

If you really want to write, it’ll happen. It might not happen every day or every week. Your health is more important than the next 1000 words. No buts. It just is.

I’ve been fighting myself trying to find a way to write. I joined Camp Nano again for April thinking it would be the motivation I needed to write. Well, most days I had no idea what to write, no focus to think through writing, or no energy after I finished the other things that needed done that day. Maybe this is what made me realize that someone else’s routines and goals won’t help me…. or at least I better have planned out exactly what I’m doing to be able to succeed for something like Nanowrimo or Camp Nano(wrimo).

Things I’ve learned:

1. It’s okay to not write every day.

2. Sometimes you can just think about writing.

3. Reading is good too.

4. Finding ways to brainstorm a little at a time is helpful. For example, I’ve started brainstorming a story idea on notecards. I have lots of notecards and write down a simple thing on each notecard.

5. There are days where you have to take care of yourself and rest and writing just won’t happen. If you can’t decide if you want to go back to bed after breakfast, you probably won’t be writing. Or maybe you’ll be writing after you take a nap.

How I use notecards/plan to use them: When I’m ready to actually sit down and write, I can grab one notecard at a time. I don’t need to start writing with chapters in mind. A first draft, or a pre-first draft, or a zero draft is just that… the very beginnings of a novel. The baby novel. The not ready to meet the world yet novel.

This advice works for everyone, but I think it’s especially important for anyone who is chronically sick or chronically ill and has to “count their spoons” to get through every day.

 

All of the Immune symptoms

A few days before Christmas I had a really bad flare in SI joint pain. I figured out it was SI joint pain thanks to some friends who have more of an understanding of anatomy than I do. (I almost wish I’d taken anatomy in college, almost.) Possible piriformis syndrome accompanied this for a few days as well. I treated the muscle problems, as they resolved it turned into a headache that lasted from Sunday to Tuesday afternoon because the new migraine meds I tried didn’t exactly work. Tuesday was tricky. Wednesday was better because there was less pain but I still had a low grade headache that seemed to be connected to fatigue levels. (Also had a 2 hour nap on Wednesday.)

Now it’s Thursday and I’m realizing the only thing that has improved is the pain levels. I’ve had tingles, chills, pins and needles, fatigue, nausea, an increase in appetite, way major brain fog, more fatigue, bladder problems multiple nights, regular levels of pain, abnormal levels of pain, muscle spasms, worse muscle rigidity and now on top of it the “OMGIT’SACOLD” immune system response is coming back. I took some prednisone middle of December to get all that to stop and it did. BUT it’s coming back. (I had a cold after being at a beer and music festival 11/1/2014.) I have no cold! Body! There is no cold! Calm thyself! Citizen! Enhance your calm!

I said fuck it and took some nyquil tonight. I’m not sick but it’ll help the symptoms. Maybe with a full night’s rest something will calm down.

Earlier I had a crazy prednisone type hunger – but no changes in medicine and definitely no prednisone.

My body is cycling through as many different issues/problems/symptoms/things/pains that it can come up with.

Five more days until my next appointment with the neurologist. I’ll wait till tomorrow morning to decide if I should call the neurologist tomorrow.

Motions

This probably applies to lots of things so that’s why I’m throwing it up in a blog post. Right now, it applies to my life as a full time patient living along side multiple chronic diseases. Side note: People with chronic health diseases often have anxiety and or depression.

 

Going through the motions

The alarm starts playing music and your eyes crack open.
Crawl out of bed in the morning.
Shuffle to the bathroom.
Stumble to the kitchen.
Collect the foods necessary to build a breakfast.
See the husband off to work.
Now you’re alone with the cats.
Eat breakfast not because you’re hungry,
but because you need to take your meds.
Check your calendar. When is the next doctor appointment?
Nothing today. Breathe a sigh of relief.
Shuffle back to the bathroom –
take the rest of your meds.
Is it a bad day?
Then sit on the couch wrapped in a blanket, staring at Netflix.
Is it a better day? Have your meds kicked in yet?
Then find a book, or knit a sock.
Around noon, gather foods again.
Eat again. Maybe you’re hungry this time.
Check Twitter. Wonder how the little people inside your phone are fairing.
After lunch?
Maybe you can wash dishes or collect laundry from the bedroom closet.
Maybe you can care for the cats.
Maybe you can knit some more.
But maybe you’ll need to nap instead.
Check the freezer. Make plans for dinner.
Wonder where the day has gone. Check Twitter again.
Have a snack. Chocolate sounds good.
Don’t forget any meds.
Before you know it, the day is mostly gone. Your husband is finally home.
Dinner time.
Your husband cooks. Some days dinner is the best thing.
After dinner?
If it’s a better day maybe there will be some game playing, or some conversation.
If it’s a bad day, there won’t be much of anything. You’d be sad about the bad days if you could think through the fog.
Then it’s time for more meds.
Then it’s time for bedtime, and more meds.
Finally, you can go back to bed again.
When will it be easier? Maybe tomorrow it will be easier. Maybe tomorrow is finally the day.

There’s no way to know.

Tomorrow you go through the motions all over again.

I don’t know what to title this post

Verbal diarrhea alert. This post is all over the place. Proceed at your own risk.

My birthday is in August. Usually August has something fun happen – or it’s just same old shit different day. This year August has had all kinds of things happen. If July had dragons, I’m not sure how to describe August.

The NIN/Soundgarden concert we went to was fun and exciting and awesome. (Trent Reznor is 49 years old but moves around the stage like something else.) The two different trips to the ER because of anaphylaxis was not fun, or exciting, or awesome. In fact it was down right fucking scary. Twice recently I’ve woken up happy to be alive, while at the same time being depressed at the state of my health. I want to see things get better. MS may be the hole in my head but I’m not going to let it control me. However, when the MS works with the depression, they make quite the team.

Some things have improved. Some things have not. After having the anaphylaxis reaction a few hours after receiving general anesthesia, I’ve since learned that I must be forceful and pushy with doctors to make sure they understand histamine intolerance AND how it relates to what they are doing. I can’t just explain histamine intolerance and assume they will apply their training and critical thinking to what I’ve told them. Maybe I should give quizzes.

I’m a special snowflake zebra – or a donkey. Those hoof beats you hear are definitely not from horses. After the one appointment next week – post – op visit – I’ll be back to multiple doctor appointments a week for awhile. Still, I continue to be a full time patient. I do not care for this being part of my identity. I’d rather identify as a full time writer.

I guess it’s because of our American society – but I keep wishing for some medicine that will bring my immune system in check and let me live something like a normal life… without possibly dying the next time I try a new medicine.

At some point I’ve gotta get a break. We’ve gotta get a break. There’s too many shitty things happening. I’m trying to make my way through all this shit and frustration and confusion… but the universe is not making it any easier. It’s not like I’m just sitting here waiting for things to fall in my lap either. Too stubborn for that. Besides, if I waited for things to fall in my lap, I’d probably be allergic to them. Maybe I just need to find a doctor to write a book on me. Or something. Too bad you can’t make money off of being a case study.

Speaking of money I need to find out about getting my student loans forgiven so I have no idea if and when I’ll be able to work – let alone work full time or IN MY FIELD.

I might still be working through the anger part of acceptance….. As part of that I’d like to find a bit of lyrics from a NIN song that apply to how I feel and get a tattoo. I won’t be the first or last person to want a NIN lyric as a tattoo.

Anyways.

FML

 

the sick life of a full time patient

If you are not familiar with the idea of the Spoon Theory, developed by a blogger with a chronic disease, but want to know more about how people with chronic disease(s) feel on a daily basis, you can find the explanation here. You can also read on to see why I have problems with this explanation of living with chronic disease. However, tt is important to understand this concept as it was originally presented because I think it’s important to see how the author came up with the idea “on the spot” in a restaurant when she was basically “put on the spot.”

The Spoon Theory is just the tip of the iceberg for people living with chronic disease – especially for people with more than one chronic disease. Chronic disease is often autoimmune, and so it’s not uncommon for someone to have more than one chronic (autoimmune disease).

I identified with this idea of the Spoon Theory when I initially started being diagnosed with chronic illness, such as my fibromyalgia. Initially it seemed to fit. But then I started reading more about my health, understanding more about my health, and over the weeks and months I began to realize it doesn’t always apply. It cannot account for the unpredictability that is life when you have a (seemingly invisible) chronic disease. The Spoon Theory is too black and white. Life isn’t as easy is black and white. Nothing is that clear and concise, except maybe death, taxes, and medical bills. Life is gray, and chronic disease is even grayer than gray. The Spoon Theory even makes living life with chronic disease easier than it actually is.

The main problem with The Spoon Theory is that it does not take into account so many other things that are part of the life of being a full time sick person. I cannot go to the doctor, be given a medicine and expect to feel better in seven to ten days. More than one doctor has told me that he or she will help me, but has no idea how long it will take. First, right now, I am a full time patient. One of the primary reasons I cannot currently work is because I see so many doctors, too often. There’s not enough time to travel to and from appointments, keep my own medical records up to date and organized, pick up new medicines at the pharmacy and work a full time job on top of everything else every single adult person would like to be able to do with his or her life. (What’s a vacation?)

Second, it does not account for the shame and guilt a person with chronic disease, and chronic pain and/or fatigue feels when they have to ask for help from their friend, family member, or care giver – again. I’m lucky; I’m married and my husband is extremely understanding and reliable. He helps me out. I wish I could help him out as much as he helps me out. Also, it does not take into account the anxiety and stress involved in seeing a new doctor either in a new specialty for a new “problem” or having to find a new doctor because a doctor refused you care. Or, the fear of going to the emergency room because something is wrong but you don’t quite know what.

Third, it does not account for the mental fatigue and internal anguish caused by having your identity stripped away or otherwise altered against your will. Once I was a full time graduate student and intern at a local nonprofit organization. I was learning, and helping, hoping to be able to aid people further after I achieved my degree. Now? Sometimes I’m too tired to figure out what to make for lunch, let alone figure out what household chore needs completed next.

Fourth, The Spoon Theory suggests a normal versus abnormal mentality. Everyone has bad days. Everyone knows what it’s like to have a bad night of sleep. Everyone can take a nap and regain some lost energy. The Spoon Theory focuses on physical energy and physical fatigue. The Spoon Theory is useful in explaining how people with chronic disease have reduced energy and increased fatigue. But, beyond that the analogy loses some of its power because of the normal (them) versus abnomal (us) mentality – because it’s explaining how the sick people are different from the health people. Perhaps we should do more than focus on perceived outward differences.

Possibly the biggest problem with the Spoon Theory, is that it does not account for the invisible nature of many chronic diseases and the judgement that someone with reduced physical and or cognitive abilities deals with on a regular basis. I don’t look sick. However, I might act high, confused, or otherwise just “dumb” because of chronic pain, chronic fatigue, or side effects from medicines – including but not limited to pain medicine. I am sick.*

And one more thing, the Spoon Theory does not account for the fact that having one or more chronic diseases and living with chronic pain and or chronic fatigue changes how a person approaches life. It also changes how other people approach you, when you are the sick one.

I think I no longer identify as a spoonie,** at least not primarily. I’m not quite sure what I do identify as right now either. I feel like a full time patient, full time kitty mom (we do have 4 cats after all), a part time knitter, a part time writer, and a part time wife.

I live the sick life. At times the sick life is lonely and scary, full of unknowns and scary monsters. Other times, the sick life is just like, well, life.

 

_____

*I don’t think the word “sick” as it’s defined in the English language is specific enough to cover all aspects of sickness. We need more words.

**spoonie definitions vary depending on who you talk to or where you read.