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.”

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.

To share how I self-advocate at the doctor?

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

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

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

Vitamin B6 toxicity

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

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

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

B6 toxicity can do lots of different things.

From Mayo Clinic:

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

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

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

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

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

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

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

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

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!

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.

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.

Today Recovery, Tomorrow Writing

Today I’m wearing a knit wool hat even though it’s 70 in here (and rising) and my head has menthol on it. The migraine is down but the nerves are still twingy AND I woke up an hour and half later than normal. I’m so stiff but I’m not sure I’ll be able to stretch today either.

Tomorrow Camp NaNoWriMo starts. I’m aiming to write some poetry. I’ve already done some minor brainstorming and set aside a notebook. I draft poetry better on paper. I’ve also got a book on types of poetry. I’m hoping to test my abilities and learn some things this month. I think I’ll plan on a novel for the next round of Camp NaNoWriMo, depending on what’s going on.

In preparation, I have printed out some signs to hang around the house. These kinds of images still amuse me.

Both found on the Internet – searched google for you should be writing Neil Gaiman pictures.

I’m hoping poetry written on paper, as compared to a novel in Scrivener, will make it easier to write even when I’m in doctor’s waiting rooms. I’ve got three doctor appointments and one lumbar puncture in the month of April. Here’s hoping the lumbar puncture does not cause me any headaches or leave me recovering flat on my back.

In other news, I’ve found decaf coffee I can drink with no unfortunate effects. I didn’t have coffee for last November’s NaNoWriMo.

 

you should be writing

GaimanNeil

Yesterday I had a needle poked in my eye

It was nothing serious!* Two nights ago I got something in my eye. Everyone has done this at least one. Wait a second, I didn’t just get something in my eye I got SOMETHING in my eye. By the end of the night I was pretty sure it was out but my eye HURT. Like I was starting to get a headache it hurt so much. I ended up going to bed and just laying there with my eyes closed instead of doing something interesting like reading before bed.

Yesterday morning the same eye was all red and angry looking, more like I was hung over. Eye seemed better, it wasn’t bad, just a smidge uncomfortable. Fast forward through some drive time and some looking at computer screens time and I’m realizing my eye is really really bothering me. Then I notice the little BUMP on my EYEBALL. So I started to get nervous. I started to wonder if I’d scratched my eye the night before. I ended up calling our eye doctor and getting an appointment in the afternoon. (Husband drove home from work to get me – and then drove me to the appointment. We made it there on time!)

Finally, I’m talking to the eye doctor. I explain everything – with my eyes closed because at this point I’m more comfortable with my eyes closed. (Ophthalmologist.) He also happens to be really nice and really smart. He’s talking to me, and looking at my eyes and first he does the professional doctor speak for HOLY SHIT THE INFLAMMATION. Then finally, he notices the bump that I’m talking about. He explains it’s a cyst (There’s a big word for it I don’t care like googling for right now.) But it has to do with your eyeball healing and then not quite healing correctly and a cyst is formed. The cyst has tears in it. I’m thinking OMG NOTHING SERIOUS!!!!

So the doctor goes on to explain how you can like wait for them to go away or something – or pop them with a needle. I’m like You can do that? Let’s do that! Right now! The doctor was really surprised. So he puts a few drops of stuff in my eye to numb it – immediate relief by the way cause now I can’t feel shit in that eye. He’s also explaining how the only way to get the cyst gone completely for sure is to cut it out – but that involves an operating room and a microscope. I’m like, nope.

So, he tells me to look one direction – which happens to be away from the needle by the way. I make sure I don’t see the needle and I sit with my chin on that thing. You know that thing. Few seconds later. He’s popped the cyst and explaining how I could have bloody tears for awhile and I’m like yea, ok, whatever. (I DON’T CARE YOU REMOVED THE THING!) Then he hands me a tissue for the bloody tears dripping out of the eye I can’t feel. So then – short story version – I tell my doctor to watch the Daniel Craig James Bond movies and also point out there’s a bad guy that has tears of blood in one of them.

On the way out to the car I was telling my husband how the doctor was really surprised that I didn’t mind the needle part. My husband pointed out that well obviously! It’s not often a doctor can make something better immediately for you so when a doctor could fix something you were all for it! I was like, duh. Yea, you’re totally write.

Other happy outcome of eye doctor appointment: he gave me “strong” antihistamine eye drops to try and a prescription for steroid eye drops to help when I have a flare up. I was like wow, that’s a really good idea because when I have a flare up the OTC allergy eye drops work for like an hour.

End result folks? It’s ok to have a professional stick a needle in your eye. If he or she is dressed like a clown? Then run the fuck away!

*Side note: This blog post is brought to you by the letters W and B, for writer’s block. I’m participating in NaNoWriMo but haven’t been able to write today. I finally realized it’s because I have writer’s block!

Labeling the Pain

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

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

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

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

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

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

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

Now where was I? Besides distracted?

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

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

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

I will own my health.

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

Prescription Drugs, etc, etc

So the last time I refilled my asthma medicine – the maintenance drug that is effectively an anti-inflammatory for my lungs – it cost $60 instead of the usual $10. No warning. This is, obviously, the after insurance price. I’m not sure I’d still be breathing if I didn’t have health insurance. Yesterday I got a letter* from the insurance company saying that the cost of my asthma medicine** will be going up and I have one more refill before I have to pay the higher cost.

Well, it already went up. A month ago. AND the small print at the bottom of the letter says I will have to pay the full amount of my medicine if I continue to buy it at a retail pharmacy. Further, changing to another drug will save me $600/year… and getting the same medicine from their mail in pharmacy will save me $120/year. Oh, so you want me to stop using the medicine that works just fine do you?

$50 copay to the specialist doctor later and I find out I should be able to switch to another asthma medicine (similar type, in the same drug “family”) and effectively pay nothing because there’s a card to cover the copay for the next 12 refills. And I have a sample since I’m almost out of the old medicine my insurance company decided effectively to stop covering.

Pharmaceutical companies are fucked up man. Eloquent right?

 

*The whole letter sounded like the insurance company was now in bed with a new drug company.

**Pulimort flexhaler

Evening Primrose Oil

I’ve had good luck with it. I’ve had no major problems with asthma since I started taking it. Been taking 1000mg at night. Still taking the Vitamin B/Vitamin C complex twice a day too… when I don’t forget my morning vitamin and dose anyways.

I haven’t made a decision on the homeopathy and what type of doctor to continue with.

Health update and the doctor

It turns out that daily breathing treatments on the nebulizer seemed to help more than the remedies from the doctor for getting over the asthma problems caused by having the flu. The remedy he mailed me (because I couldn’t take the 30 minute min. one way trip to go pick it up) helped. But, definitely still having asthma problems. Monday I needed the nebulizer – because ? – I was exposed to dust, pollen and dust from storm debris on Sunday.

After a lot of thinking and a discussion with OP (in part prompted by his trying out of a new doctor/saw new doctor for first time yesterday) I’ve realized there’s no reason for me to continue to see my current (homeopathic) doctor. The treatment might be helping – but regardless I feel as if the doctor isn’t helping. If you feel like your doctor isn’t listening to you, and ignores or doesn’t respond to your questions, why continue going? It turns out I had been trying to give the homeopathic treatment a try and that was getting mixed up with dealing with the doctor. There’s other homeopathic doctors in my area – and closer to where I live – I can look into other options.

But, I might go with a holistic approach instead of a strictly homeopathic approach. I’ve been going to this doctor for like 10 months – the list of problems remaining is longer than the list of things that have been helped. Top of the list of problems is my asthma. Secondary would probably be sensitivity to chemicals, fragrances, fumes, strong smells. It’s possible that the holistic approach has been more helpful than anything else since, for one, I’ve become more aware of what symptoms mean.

I still need to cancel my last appointment with the old/current doctor. The other reason is I’d like to see how I am without any remedies effecting me. Will I be better? I’ve already seen differences from right after a doctor appointment (and taking a remedy) and right before.