Bodies are weird & everything is connected part 1

Laying in the dentist chair this afternoon trying to be comfortable and not being comfortable I realized a thing.

Maybe I’ll make random posts like this more often? Maybe? What do you think? Anyways.

My legs are (slightly) two different lengths and my torso is slightly longer than average….

I bet I’ve spent most of my adult life trying to account for lower back pain – so like making sure I have proper lumbar support – probably having a higher chance of lower back pain from the leg length discrepancy throwing off my hips and then other variables like breasts. By the way breasts get in the way of a lot of things.

Then, because of the leg and torso things, I’ve spent a lot of time not giving my neck proper support, because I can’t have both neck support and lumbar support in the same full back chair.

And then all of these things are (more recently?) made exponentially worse because of Fibromyalgia and lesions in my spine from Multiple Sclerosis and the pain caused by both of these.

So because of my leg discrepancy maybe I have significantly more neck problems than I would otherwise. Who knows.

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!)

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!

Observations on my eating and diet

All related to health and stuff.

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

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

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

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

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

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.

 

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.

Drowning

I need to see if I can get some of the crap out of my head. I have two neurologists.

Right now, my medical history includes:*

  • depression**
  • anxiety
  • diverticulosis (asymptomatic)
  • autoimmune problem causing histamine intolerance (case study with an immunologist)
  • regular pollen and dust allergies – except they are more severe than “normal”
  • food allergies
  • food sensitivities – no gluten, no MSG, the list goes on and on
  • asthma
  • migraines
  • fibromyalgia
  • bulging disc in my lumbar – L4/L5 I think

I can now also add:

  • lesions in my brain and cervical spine
  • degenerative disc disease – no idea how bad
  • slight Scoliosis – middle of the back – I guess it’s minor?

In another 4 to 8 weeks I might also be adding multiple sclerosis to this lovely list. Technically, the neurologist’s blood tests and/or lumbar puncture could find other problems. It wouldn’t be the first time. Multiple sclerosis has it’s own list of problems which might explain some of the other constant problems I have which aren’t in the list like:

  • chronic pain
  • chronic fatigue
  • chronic sleep problems
  • cognitive/focus problems
  • muscle pain
  • needing supplements and regular medicines multiple times a day

I know, logically, that I should not feel like I’m drowning. I should not be eaten up by anxiety and depression in varying ways on varying days…. However, it’s hard to find the little things that keep me breathing in among all the other things that are scary. I know I should take care of myself.

I know that technically nothing in my body has changed – except that maybe the pain I experience at different levels every day is a sign of a larger problem. Except, now I know I’m likely to have back pain/problems/issues for the rest of my life.

What’s spending a few more months in discomfort and pain, feeling like your body has betrayed you – when you’ve already spent years feeling that way?

If it’s not multiple sclerosis – which can be treated – I have no idea where I’m going from here.

 

 

*Oh look, this distraught Virgo is making bullet pointed lists.

**I have no thoughts of suicide.

The Eliminating Scary Medical Stuff game

In roughly the last 12 months I have played this game more times than someone should have to do it in their lifetime. Bodies are weird. I’m beginning to think humans never made it out of the beta program. It’s also demonstrated just how horrible health care insurance is in this country….which is scary since having insurance is still better than having none.

Last summer I went through a rheumatologist’s battery of tests and ended up a diagnosis of fibromyalgia. It’s not Lupus! This diagnosis did actually make sense for a number of until then unexplainable symptoms and I reacted to like all or almost all of the fibromyalgia tender points.

Last summer I also went through a cardiologist’s battery of tests. This ended in a “there’s nothing wrong with your heart.” I also found out that red-40 food dye can give me tachycardia bad enough to make a cardiologist nurse insist on doing an EKG.

Last fall, I think, I started to develop a horrible rash that almost nothing would make feel better that I dealt with into the spring. I’m pretty sure now that was from the gluten intolerance I didn’t quite figure out until late spring/early summer.

Then I saw the immunologist to restart my allergy workup. He sent me to a GI doctor to check on those symptoms. The GI doctor performed an endoscopy and colonoscopy and found lots of inflammation and way too many polyps for someone my age. Also tested for celiac and that was negative. He sent me to genetic counseling – I think the genetic counselor or testing center lost my information and I only recently found the paperwork so I can consider calling – which may or may not be the old phone number from before her office moved. (The test takes 12 weeks to complete.) Additional followup and discussion with immunologist led me to try the low histamine diet for histamine intolerance. This diet has improved many symptoms.

I’ve also found out little things, like I’m chronically low on vitamin D and starting the 50,000 IU/week dose of vitamin D improved a number of my symptoms. Doing things like introducing magnesium and CoQ10 have also helped immensely.

Now, I’ve seen a neurologist about my migraines and the MRI of my brain and cervical spine found lesions in my brain and neck. This is a possible sign of multiple sclerosis. (Hey! I spelled it right on the first try!) Today I see another neurologist for an MS workup. I don’t know if this will lead to another set of MRIs this time with contrast, a lumbar puncture, and or anything else.

This makes – between last May and today – less than 12 months technically – 4 times I will have played the game of running through tests with a specialist to make sure I do not have a horrible, scary, or debilitating disease. The only good thing about fibromyalgia is that your body does not deteriorate.

Just once in my life, I’d like my body to be easy and show no signs of a scary disease – or have signs of something that’s simple and easy to fix. Breaking bell curves can be exhausting. I’m taking an academic article about MCAD to the neurologist appointment this afternoon.

*edit for more typos I missed in the first edit.

Body language

When you have chronic illness, and or chronic pain, it becomes harder to understand the language your body uses to communicate with you. It becomes harder to deal with unscheduled migraines, pain flares, or stomach pains, especially when you have no idea when the migraines will leave again.

You might do everything you can but still have something happen that you cannot account for. You might be the most careful planner and still have something happen. This means you need to be both a careful planner and impromptu.

It’s a bit like using a computer that will sometimes warn you before it reboots — but only sometimes.

Too bad there’s no translation dictionary available that would translate body language into some language that actually makes sense.