I’m a bad patient

I’m not a success story. My body doesn’t follow a set of rules, or react as expected and this is just one example. My physical therapist finally said, you’re done here until you get a second opinion. She finally stopped ‘beating around the bush’ and said, you shouldn’t be here anymore because most people leave PT way before this. (She tried to say it as nicely as possible.) Would have been easier if she just said go away. The last three appointments before my last physical therapy appointment that I’ve had the therapist spent much of the time asking me how I felt, what I was doing, and how it felt after I did x or y exercise. Every time I thought I was walking out with a plan. Every time I was confused why we were going through these steps. Every time I noticed more and more faces, less and less feedback. (Each appointment was 4-5 weeks apart. She never clearly said if I was meant to be doing anything different in between appointments.) Every next visit something was different. Then, after what became my last appointment everything became clear. My theory, my assumption, was my physical therapist’s boss didn’t want her spending time on me anymore. I wasn’t making enough progress.

Probably partly because I have pain and problems with exercise that are super difficult to explain.

Probably partly because my physical therapist doesn’t truly understand the different effects multiple sclerosis symptoms can have on different people. There’s too much variety in the symptoms.

Probably partly because I’m not like the typical physical therapist patient who comes to get something fixed after surgery or an injury. I’m different.

Probably partly because I take more time than the average patient and I’ve had more intensive therapy than the average patient. Similar to how I see more doctors. And I ask questions about anatomy.

When I left the last appointment she was saying things like maybe I need to get a second opinion and, again, asking me what I wanted to accomplish in PT. – My previous plans weren’t good enough after someone else had reviewed my records/her reports. She suggested I email her  my schedule so she could give me pointers on how to increase my activity. We did that another time in the past, she didn’t follow through. I said sure, knowing nothing would come out of it. Then, out of the blue she followed up a week or so after my last appointment via phone. Why would she call when she stopped replying to the majority of my (occasional) emails with progress reports. I don’t even remember the content of the call because I said what she wanted to hear. She wanted me to go away, so I finally have and that last phone call was for her to get her due diligence completed.

Chronic diseases make you a patient some doctors don’t want to deal with. MCAS makes you a bad patient and it made me a bad patient for physical therapy because I continued to have something happen that slowed down my progress – most of 2017. Like a migraine for a week more than once, or 3 weeks of antifungal treatment via PICC line. Or an allergic reaction that left me sick for a week. Or I tried increasing how often I did my physical therapy at home, and it was too much, and my symptoms flared. Nothing is easy. Just once I’d like to be able to do what is supposed to make me better AND have it make me better. All year my physical therapy was one step forward, two steps back, or two steps forward and one large step back. Sometimes one step forward, nothing backwards. As compared to where I was a in January of 2017 I’m better, definitely, but I have plenty of problems and as of yet, no medical professional who wants to take the extra time to understand.

MCAS defined

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.”


It’s not just being tired. It’s not just a long day or not sleeping well last night. It doesn’t get better with caffeine. It’s exhausting. It’s heavy. Being tired can be fixed with a decent night of sleep. If you’re lucky enough to sleep well – even most of the time. The English language is worthless, frustrating, horrible, for not having a big enough word to explain this fatigue.

It’s like the steel blanket things that you are covered with for x-rays, like at the dentist, except it covers everything. Your brain is filled with this thick soupy fog you can’t see through. Like walking through layers of snow and ice or trying to run in water. Try to make a decision, I dare you. It’s basically impossible. Any decision you do succeed at completing is also exhausting.

Everything you do seems to take double or triple the necessary energy and you don’t feel like you have any energy anyways. Standing is hard because it takes more energy than sitting. Your eyes might be blurry. You mind is blurry. Are you running on “fumes”? Is there anything left inside?

But you aren’t sleepy. You don’t want to sleep, except to escape this feeling and hope that you’ll feel better after you sleep. Sleep might fix this. Sleep might not do anything. You can feel like this after 7 or 8 hours of sleep. You can feel like after being awake just long enough to eat breakfast. Or you can go a whole day without feeling this indefinable weight.

It’s carrying a burden of indescribable weight and size. Sometimes moving around will help. Sometimes sitting still helps. You never know. Food can help but then you need to make a decision to decide what to eat and it all starts again.

It’s not like leg day, or working too late, or hangover after a late night. It’s a disaster. It’s exhausting to be so exhausted. You’re drained, low, crushed. You don’t know what will make you feel better. You’re empty inside but you’re not sleepy. You search for what will help but nothing is ever quite enough.

Then you go to sleep, hope you’ll get a decent night of sleep, and wake up the next day. It might happen again today too.

And then there’s the threat of this fatigue. It’s like that steel blanket is laid beside you and you never know when someone will walk by and toss it over you, without asking, without a word.

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.

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.

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.


Another MRI today

Today’s MRI was just of my brain so it wasn’t as long. Really, I said “Just my brain.” It breaks my brain a little that I just said that.

The new MRI place I got sent to is also much nicer than the one I’ve been too multiple times before. The waiting room wasn’t full of bored looking people. Unfortunately, the waiting room did have a TV tuned to FOX and some kind of gossip talk show came on….. If I’d listened to that any longer I would have considered violence. I was so very happy to actually get headphones and be able to listen to music while I was in the MRI tube. I didn’t even mind it was just regular radio and I had to hear some commercials. The headphones were also very good ear protection.

The 50 mg of Benadryl I took before I left for the MRI appointment did it’s job and I did not have a reaction to the MRI contrast. Sadly, I still needed pain medicine afterwards because nerve pain in my back and joint pain from being stuck on the too small part of the MRI tube for about an hour.

Now I get to wait and see. I know my doctor’s office will receive the MRI results/report in 24 hours but I don’t know if I’ll hear anything from my neurologist until my appointment in like a week and a half. Then, I’m guessing I’ll find out if I have to go on the steroid regiment to stop the MS flare. Waiting to find out if my new symptoms in the last two weeks are an MS flare.

Having MS is a pain…. in multiple random places in your body.

It’s Official

Today I saw the neurologist again. All my test results are in and some last MRIs are being ordered.

Treatment is going to be started. Things have been set in motion. How fast they go are also up to the bean counting pencil pushers at the health insurance company.

I’m officially diagnosed with multiple sclerosis. (When I was diagnosed with fibromyalgia I cried.)

This time has been different. I know it hasn’t really sunk in yet. I’ve had more time to get used to the idea  but still I’ve cried about the injustice of it all, more than once, in fact.

I wonder how long it’s going to take to actually sink in.