Observations on my eating and diet

All related to health and stuff.

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

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

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

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

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

I will welcome our nanobot overlords

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

*Inspired by a conversation with my husband this morning

Tips on how to go to the Doctor

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

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

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

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

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

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

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

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

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

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

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

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

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

Being reminded of what you wanted to be…

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

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

What if you can’t work and

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

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

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

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

Gastroparesis: Sometimes you know more than your doctor

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

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

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

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

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

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

Life is intense: Another medical post

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

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

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

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

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

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

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

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

Control

I don’t have a job and cannot have much income at all for the next three years if I want my mountain of student loans to be discharged for disability. I’m not able to fill my days with volunteering since I’m not working because I do not have the physical or mental energy I once had a few years ago. I also have to be aware of what/who I’m in contact with. If I get sick from a sick person, I could be sick for a very long time.

I have to plan out a lot of my activities – usually everything outside of the house – so that I still have energy for anything afterward. There is very little safe and healthy for me to eat outside of food that has been prepared at home. The one thing I know I can get from any convenience store that is safe for me is potato chips…. except right now while this acid reflux is really bad. My diet is very restricted and there are few food or drink “indulgences” that I get to partake in. In the morning, I usually eat so I can take my medicine, not because I’m hungry.

A few weeks ago I received my (first) denial letter for my SSDI application. (Apparently the DoE can discharge over $110,000 in student loan debt easier than Social Security can give out monthly checks.)

I knit, peruse the internet, or play ithing games, almost every day. I feed the cats. I remember my regular meals but sometimes forget to eat in between those times. I have problems with anxiety and depression, in part because of my health problems and in part because of all the bad experiences I’ve had in medical settings….and in part because I feel like I have very little control. On bad days I do little more than stare at my ithing, watch Netflix, eat and nap. On good days I can handle computer games and more than one or two household chores. Sometimes it’ll be two weeks before I leave the house besides for the grocery store or a doctor appointment. Going to the movies is really hard on my body and brain because of sitting still for so long and mentally processing everything from the movie. I think that must be why I like re-watching movies/tv shows.

When I was a grad student I wanted to make my life into something meaningful. I wanted to be able to help people by working in a non-profit organization. I can’t do that. It’s not possible. Someone/something/the universe/the fates/a higher power/my genes took that away from me. What I live now doesn’t feel very meaningful.

Somehow I need to find a way to focus on the little things I do have control over and one big thing I do have control. I choose to continue to fight to the dark thoughts that tell me it would be easier just to give up and stop it all. Except, that living shouldn’t be a battle.

Dealing with Allergies: A list

1. If you’re allergic to a food or substance, then any amount of that food or substance will cause allergy symptoms. Also, anaphylaxis is more than just your face swelling up and or your throat closing up. (TV shows are very bad at presenting food allergies.)

2. It’s possible to have an allergic reaction to food but not be allergic to that food. For example, if you’re (very) allergic to ragweed, you might not be able to eat bananas. Lactose intolerance is not an allergy.

3. Antihistamines work better if you take them before your symptoms start. Some allergy meds might also need a few days before you really feel the full affect.

4. Some supplements or vitamins might help alleviate your allergy symptoms but remember that supplements are not as well regulated as medicine. Vitamin B and vitamin C are some supplements that might help.

5. Antihistamines are safe and there are multiple kinds. If one kind of (OTC) antihistamine doesn’t work for you, try another. If OTC antihistamines don’t help, then see your doctor. If antihistamines make you sleepy, try taking one at bedtime.

6. Your house or apartment might be making your allergies worse. Curtains, carpets, pillows, and beds are all places that can accumulate dust. Even something as simple as changing bed sheets regularly and vacuuming regularly can help ease symptoms. If you think you are allergic to dust, try taking your antihistamine at bedtime.

7. Zantac and other similar medicines are antihistamines. (Prilosec and Nexium are not.)

8. Allergy doctors and immunologist doctors can help you with allergy symptoms. Expect to answer a lot of questions and possibly go through a skin test. The skin test isn’t scary at all. Technology has improved and it’s quick and handled in the doctor’s office.

9. When taking antihistamines remember to stay sufficiently hydrated, especially if you are using decongestants.

10. There are multiple kinds of OTC allergy eye drops. Try to find one that doesn’t not advertise “getting the red out.” Also, see if lubricating eye drops alleviate any of your symptoms.

11. Saving the most important thing for last. If you have ever had trouble breathing after eating a specific food you should go to your doctor. You might need to carry epi-pens. Food allergies are serious business and what you’ve “learned” about food allergies on TV is probably very wrong. Side note: Step 1: Use Epi-pen. Step 2: Go to the ER. Step 3: Don’t die.

Note: This is not medical advice. This includes information that I have learned through years of dealing with allergies and treating my symptoms. I have food allergies, food sensitivities, problems with chemicals, pollen allergies, and sensitivities to other environmental triggers. I am the type of person who carries antihistamines and epi-pens just in case.

Nervous system diagram

I found this buried in one of the folders on my computer that are labeled something like “sort this” or “to be sorted.” I’m guessing I found it somewhere via Google…. but I don’t remember anything 0…………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………….else.*

Note this is the autonomic parts of your nervous system. I assume this is useful for people with MS and other types of diseases that cause lesions in the brain and/or spinal cord but it could also be confusing. Either way, it’s neat to look at. (don’t forget to click on the picture for the big version)

image of parts of human nervous system
image of parts of human nervous system

*Parker (one of our cats) helped me make this blog post. I’m easily amused.

Why I stopped shaving my legs

There’s a few obvious reasons and some would say I’m lucky. First, I don’t do anything like go swimming (or do porn?) that would serve as a functional reason to shave* my legs. I also don’t have thick dark hair. In general, a woman shaves her legs because she likes it, because she thinks she’s supposed to because that’s the way it is, and/or because her significant other/partner/spouse likes it.** That means when a woman doesn’t shave her legs she’s supposed to hide her legs. Women aren’t supposed to have hairy legs…. except everyone has body hair.

For a woman to shave her legs requires time, energy, ability, and money. It takes time and energy to shave your legs and it takes a specific amount of “product”… and special attention then is needed for caring for shaved skin. Yes, men shave their faces – except when considering in square inches, men have a lot less to deal with! Also, women’s products – like disposable razors – are often more expensive than men’s despite the product being virtually or completely identical. (The bathroom mirror also often has better light than the shower.)

Therefore the first main reason I stopped shaving my legs was because it means I get to spend that time, energy, and money on something else. It also means that I have less problems with dry and sensitive skin. I also don’t have to remember to shave my legs or decide when to shave my legs if I’m too stiff, tired, or in too much pain.

The other half of why I stopped was that I realized there no reason I needed to actually shave my legs – since I don’t mind my hairy legs. One day, perhaps reading Twitter, I realized that the western/American standard of beauty is based around the comfort of the viewer. There’s no reason why I should shave my legs just to make some stranger in the grocery store more comfortable when he (or she) looks at me. I’d rather be more comfortable not wearing long pants to hide my legs in the summer (Texas) heat. I don’t have itchy dry skin on my legs, or even a rash. It’s also provided me more freedom because it’s one less thing to do, remember, plan for, etc.

*Or use some other type of temporary hair removal product that requires regular maintenance and attention.

**Western culture, American culture, mainstream American culture is all I’m speaking of here.

Camp NaNo starts in 2 hours

First month of Camp NaNo starts tomorrow – or in two hours since it’ll be midnight in about two hours for me.

I have no idea what to do about it or not to do about it. I haven’t been able to write because of health issues and, well, stuff. My health problems make it very very difficult to write long periods of time and regularly.

I can’t figure out how to give myself goals to get back into writing either.

I know I have this vague idea for writing a story/book/something where the world has zombies and magic and the/a protagonist is a woman who’s awesome at fighting zombies and just plain awesome.

Oh, hey. How did I manage to go like a whole month with no blog posts? What’s up with that?!

Look, a badger! with a gun!

Chronically sick and grieving

Apparently, I’ve been grieving for awhile. I didn’t get the memo.

Grief can occur in many different situations. It’s not something that happens only when you lose someone whether it be death or the end of a relationship.  Grief also occurs when being diagnosed with a life changing disease, the death of a pet, the loss of a job. A lot of people probably understand grief as something that occurs in stages. Culture is full of such references. Those five stages are denial, anger, bargaining, depression, acceptance. However, there is also thinking that grief does not occur in stages but rather in a cycle.  Here’s a great explanation of grief with possible causes, the stages, and how it can also be described as a roller coaster. I like the roller coaster idea better than a cycle. Regardless of which you prefer, I like “cycle” or “roller coaster” better because they are more fluid and have more motion than what you get from the word “stage”.

Where am I going with all this? Because of the counseling I’ve been doing for the last few months, I’ve realized I have a lot of grief in my life. I’ve lost access to foods, social events, hobbies and other fun activities, as well as easily completely tasks or chores because of my health. There’s a list of things I can no longer do because of all of my different health problems. I don’t want to go into listing all of them here. There’s also a list of things I’m grasping onto because I don’t want to lose them – like reading books regularly. My cognitive problems make reading harder than it used to be. One such example would be learning – the “hard way” – that I cannot complete light yard work without having something to protect myself from dust, pollen, irritants beyond antihistamines. This is on top of the restrictions I already need to deal with like not being able to work outside when it’s warm.

This realization that I’ve been grieving over the things I’ve lost in my life makes me think I’ve been self-absorbed these past few months. I understand, at least on a logical level, that this is because I’ve been doing a lot of internal processing. That kind of thing takes time and energy. Especially since I’ve been sick on top of my regular chronic sick life. I’m writing this on my fourth day of taking 50 mg of benadryl every 6 hours. (That includes setting alarms the last two nights to continue at the 6 hour intervals.

I don’t know how to cope with this realization that grief has invaded my life other than thinking I need to do something more than what I’m already doing. I knit almost daily and that helps me. At this point I think knitting is a form of meditation that works for me. To add something else for coping and processing makes me think that writing will help. I enjoy the act of writing. I liked writing papers in school, even though I hated starting writing said papers. This blog seems like a great way to start but I’m not sure of the details yet. I’d like to post about things beyond my health, emotions, or random crap. More book reviews perhaps? Writing prompts? I don’t know.

So far, I only know this. I feel like I’ve lost control of my overall life and that this is causing me to feel grief, anxiety, anger, and fear. This emotional stress is also hurting my physical health. I need to do something about it.

 

This day! or Fuck fax machines! or Screw my immune system!

I was planning to rest today because my immune system is still on the fritz and going overreactive since the cold I had in November. It’s kind of like allergies + eating + breathing = react to ALL THE THINGS. We need to only react to SOME of the things! Stress makes all this worse and, well, holidays!

Side note. The temperature was in the teens at 9 am. I left the house a little after 11.

Started out finding out my pharmacy’s grasp on technology isn’t fantastic. Phone call, then I had to do shit in person. I had to get information from my pharmacy. Like hard copy. I had to get a prescription that has been filled since November fixed so they’d fill it and file the claim with insurance properly. Basically, they shouldn’t have filled it and filed it with insurance the way they did in November or December but someone just now noticed. If they’d noticed before it wouldn’t have cost me an extra trip. (If not filed properly the medicine costs me $160 and that’s with insurance paying part of it.)

There I found out that my GP phoned in antibiotics after I called yesterday asking for another prednisone taper to get my immune system back to base line. Obviously didn’t need the antibiotics but obviously needed to actually talk to someone about what’s going on.

Prescription did get straightened out. Three calls every day for three days? So, leave pharmacy, go to my neurologist’s office. I got an awesome parking spot at a place where you usually are stuck valeting. (Small good thing!) Get everything straightened out. Turns out the pharmacy never received anything that was faxed to them yesterday by the lovely people at my neurologist’s office. Fuck faxes. Why are we using faxes in 2015? EMAIL EVERYTHING.

I figured out a little later that technology failed at three different points. It could have been fixed faster if someone at the pharmacy had called ME.

Finish at neurologist’s office. Call GP office in car to see if I can schedule an appointment with my regular GP. Nope. But I can see the PA who I’ve seen the last few times. Appointment set. Now I need to go home. Neurologist’s office is 25-30 minutes from home.

Get home. Figure out I barely have enough time to gather food to snack on so a real (warm) lunch is out of the question. I gather everything I could possibly need. Get everything together, including make herbal tea to take with me (cause miralax is easiest to drink in a hot beverage).

Get to GP’s office building. Get another awesome right by the door parking spot. (This never happens twice in one day!) Have enough time to sit and collect my thoughts for like 3 minutes. Go in, wait. Finally, I’m talking to the PA who’s seen me a few times for this same issue…. it started as a cold that turned into a sinus infection because immune system is princess. We talked. I explained zebra, not horse. I asked if it made sense. She said yes!

Now I get more prednisone as well as trying Singulair. (Interesting! I didn’t know it was a mast cell stabilizer! I hope it works!!!!) She also told me about an excellent looking Vitamin D3 50,000 IU option that is over the counter AND free of artificial colors!

Leave GP’s office. GP’s office is 20-25 minutes from home. Now I need to stop at the pharmacy on the way home as well as get gas afterwards.

Get to the grocery store/pharmacy. Prescriptions are ready! Praise Keith! I have a few other things I want to get… so finish at grocery store. Then go get gas. Thankfully we happened to buy a house less than 2 miles from a grocery store.

Now I CAN GO HOME.

I should have looked to see how many miles I put on my car.

Overreacting immune systems are no fun.

I took 60 mg of prednisone about 40 minutes ago and I’m in bed.

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.

Have I really been sick for a month and a half?

Or, I hope I don’t need a third course of antibiotics. Caught a cold after attending an outside beer and music festival. Spent too much time among the unwashed masses. (And had to use porta-potties.) Cold turned into a sinus infection. Then either the sinus infection wasn’t kicked with the first round of antibiotics or a developed another sinus infection. That’s just since November 1st!

Basically, now that I’m free of infection but still coughing and blowing my nose, it’s like my immune system has been fighting the cold ever since I caught it – and got over it. Technically, I did get over it. But my immune system didn’t ever bother to stand down.

I think this further enforces my whole idea that my immune system is staffed – or run – by conspiracy theorists.

Still might have another doctor appointment tomorrow. Tempted to cancel it so I don’t have to get out of bed. Looking at a run of prednisone now. Hopefully my body will calm its shit.

I mean, c’mon! A COLD. I’m so damned tired. Only good side of this? I’ve been in virtually no pain through all of this because my body is doing other shit. I’m not going to worry about this causing an MS relapse that’ll require more and extremely more powerful, steroids. I will not.

Now, my most serious decision for the rest of the day will be when to take the NyQuil.