Category Archives: tale of woe

I hate medication.

I am on a lot, a lot of medication. 10+

I feel like utter shit. There is no other way to describe having a headache for 7+ hours. I feel fucking hungover and I’m getting sick of it. I can only chalk it up to medication, because I’ve felt this way before on days when I properly take my medication and add a tylenol or two to the mix.

And I’m not even abusing, overusing- if anything, I’m not even taking all of my medication but that’s not the cause of the headaches.

I’m just incredibly bitter and grumpy right now and life just doesn’t help, I woke up and late and have been trying to sleep- I missed class and I probably would have fainted on the subway between the headache, dizziness and heat.

It’s 30 degrees out and I would love the beach if I didn’t feel like this and my vision wasn’t so wonky and just, ugh. I just feel overly lethargic and am also a little scared to shower in case I fall over.

I’m trying really hard to be coherent.

I don’t know if I can fake a smile and stop myself from snapping at anyone either, so I’d rather just hide in my hole and curl up in a ball and sulk.

I swear though, if one person tells me today that I wasted my day doing nothing, and that I seem fine I will fucking tear them a new one.

Is it the headache that is making me this irritable, or the medication, or both?

Walk in my fucking shoes. Ugh, if only I could say some of this out loud. (Never mind that I don’t really curse. In general. I must be really out of it.)


From The Healing Journal.

Pills, pills, pills…

FEBRUARY 2, 2010
by Kim Christensen

Breakfast!

There’s my breakfast pill dose.  Not too bad compared to some Lymies out there, only  nine pills!

The hardest thing about pills is the scheduling.  Seriously.  Take some pills with food.  Take some pills on an empty stomach.  Take some pills with certain kinds of foods. Sometimes I’m having a hard time finding time to eat in my pill schedule. No more snacking.  No more mindless eating.  Nope.  Meals are planned.  Pills are planned.  Everything is planned. I have a schedule to maintain.  Sometimes I’ll find myself so hungry, but know that I shouldn’t eat because I need to take my pills on an empty stomach.  Then I choose between pills and food.  I usually choose pills, just because I’m feeling militant.  But of course, I”m losing some weight now.  While that may get me back into my black miniskirt, I don’t necessarily like the whole losing weight like this plan.

Ugh.

In order to make this whole pill organization thing possible, I got some of these snazzy pill organizers.  You know you’re a Lymie when you use a weekly pill organizer for a single day.

I know own 4 of these little beauties, which means I only have to sit down and open all my pill bottles up for refills every four days.  Instead of using one pill organizer for a week, I use it for one day.  Each “day” slot I use for a single serving of pills – when I wake up, with breakfast, midmorning,etc.  It helps me remember what to take at what time of day, and know that all my drugs for that day (with teh exception of liquids and my refrigerated probiotics) are in one place.  Grab and go.  I made a chart of all my pills and what to take when to help me when I’m filling them. .  It has changed my pill life, seriously.  Not having to think about which pills i need when is such a blessing.

I’m finally having Herx reactions.  And the antibiotics are starting to take their toll.  I really felt great for a few weeks, but last week something shifted.  I feel like my adrenals are exhausted (literally, they hurt, and I’m getting dark circles).  The sides of my torso ache under my ribcage. I’m feeling a little flare up of the old bacterial vaginitis/yeast infection again (despite taking Diflucan and loads of probiotics).  My digestion is slowing down, and I feel cold. Ugh.  I’m getting stomach aches after meals again, something that I had let go of quite some time ago.  The chills are dreadful. I feel a weird shaky shiver up my spine and into my neck.  My skin feels like it is crawling.  And I have a searing headache that comes and goes.  My feed hurt. My eyes burn. I feel like I have the flu.

Herx, anyone?

It has only been four weeks!  How am I going to survive taking this for an undetermined amount of time?!

I’m struggling feeling pity for friends who are sick and complaining about body pain or aches. I feel this way EVERYDAY.  I still go to work.  Taking a nap won’t make it go away.  It won’t get better in a couple days.  It will be there tomorrow, and it was here  yesterday. It is here now.  It is here all the time, just in varying degrees of severity. Even a good day has the presence of a weight on my shoulders.  Combined with Seasonal Affective Disorder, my positive spirit is getting a little worn down.  Okay, not too severely, I’m still generally bubbly, despite feeling crappy. But I do feel a bit alone, isolated, and misunderstood by most of the people I see everyday.  And I do feel like holing up in my apartment, siting on my couch, and watching Law & Order SVU on Netflix.


Ah, yes, Kim, I do understand.

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I spent five hours at the hospital today…

…not even in ER, but simply doing pulmonary function tests and giving blood, oh and waiting for doctors and spending more time with them. Seriously now.

In other news, I am slightly more so coherent than I was a few months ago, so that’s always good. No more word conjoining for you, crazy one!

At least, all the time.

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In other news, I have an eye patch.

I haven’t written in a while. Truth be told, recording my lack of progress is slightly depressing. I wanted to write so many times, but I just couldn’t get around to it. Rewriting dialogue over and over in my head isn’t exactly the same.  I have been trying to get through this semester, but in the process, I rarely was able to stomach my doxy. Between balancing it with other medications and the nausea it gives me on its own, I was struggling. Throwing up again, tired, crazy. My doctor chastised me at my last appointment for not telling him I was having issues. And in the meanwhile, while some things, like the peripheral neuropathy seem to have gone away, other symptoms have been worsening.

I’m now on Azithromicin, and so far I’m alright. But the medications I’m on- so many, or so much is just constantly in me. Indomethacin, Ponstan, Mirena, Advair, Spiriva, Iron, Vitamins. The main few that I should be taking often. There are the alternates, of course, which I won’t get into right now. I’m nauseated right now and I’m not absolutely sure why because I haven’t even taken anything yet. I took Tridural last night,, which didn’t even seem to help, so I can’t imagine that it is from that, or my Advair. I really don’t know.

I’m still twitching, my muscles, that is, my lungs still ache, I still have arthritis. I still have bad headaches,  my brain is still foggy-but what has been bothering me the most lately have been my eyes- along side the headaches. The same eye that has ptosis (that is constantly moving, different “drooping lengths”) has had floaters in the eye, trouble seeing up close, eye pain, blurred vision (etc) for over a year now.  But it has been getting worse, so much worse. There were times when the eye pain would keep me awake at night and always have I been affected by too much light or too little light- but it has never been this bad. More and more I have trouble seeing for longer periods, sometimes in both eyes but usually in the left eye, the same eye with the ptosis. I woke up this morning and once again, I was so, so incredibly scared. I couldn’t see. I mean, yes, I could see, but the vision was a combination of double vision and blurry for quite some time. It has been like that after straining- reading or anything of the sort, but it has been getting worse.

My doctor called for an (another one, more specific) MRI on March 25th. It takes a few days for them to process it and a week or so for the radiologist’s report. By April 5th they had already called me to book an MRI. Last time, before I had a diagnosis, when it was from a (hate to say it, but good for nothing-) neurologist who thought I had fibromyalgia,  it took me months to get an MRI and a lot of harassing to get it earlier. This time, I suppose with my LLMD giving an accurate portrayal of what’s wrong and asking for a specific site…they called me right away, as they had a cancellation and the radiologist had marked my case urgent. I was in Winnipeg, though, and couldn’t get it done obviously here in Toronto. So now I’m booked for their next (earliest) available time, which is May 8…at 4:30 in the morning. But I was told to keep calling back until then to see if there are cancellations. Fingers crossed.

But this made me even more scared.

Optic neuritis is the inflammation of the optic nerve that may cause a complete or partial loss of vision. [wiki:]

Optic neuritis is inflammation of the optic nerve, the structure that connects the eye to the brain. The optic nerve consists of nerve tracts (axons) that originate in the retina of each eye. The optic nerve carries visual information from the retina to the nerve cells in the brain stem, where the information is relayed to the area of the brain that recognizes vision (the occipital cortex).

Optic neuritis can occur in children or adults and may involve either one or both optic nerves. Optic neuritis typically affects young adults ranging from 18-45 years of age, with a mean age of 30-35 years. There is a strong female predominance. The annual incidence is approximately 5/100,000, with a total prevalence estimated to be 115/100,000.

The most common etiology is multiple sclerosis. Up to 50% of patients with MS will develop an episode of optic neuritis, and 20-30% of the time optic neuritis is the presenting sign of MS. The presence of demyelinating white matter lesions on brain MRI at the time of presentation of optic neuritis is the strongest predictor for developing clinically definite MS. Almost half of the patients with optic neuritis have white matter lesions consistent with multiple sclerosis. At five years follow-up, the overall risk of developing MS is 30%, with or without MRI lesions. Patients with a normal MRI still develop MS (16%), but at a lower rate compared to those patients with three or more MRI lesions (51%). From the other perspective, however, almost half (44%) of patients with any demyelinating lesions on MRI at presentation will not have developed MS ten years later. Some other causes of optic neuritis include infection (e.g. SyphilisLyme diseaseherpes zoster), autoimmune disorders (e.g. lupus), drug induced (e.g. chloramphenicolEthambutol), and vasculitis.

Optic neuritis causes vision loss, which may be mild or severe and may occur in one or both eyes. Loss of vision may occur over days. Vision in the involved eye or eyes can range from almost normal to complete blindness. Color vision may be particularly affected, but the person may not realize this. There may be pain with eye movement. Depending on the cause, vision usually recovers within a few months. However, some people have repeat episodes of optic neuritis.

My eye hurts so effing much, and I have an exam tomorrow and I’m exhausted and nauseated and my bones hurt. And I can’t see that well. I’m going to put this damn eye patch on which I don’t know if I should be wearing, but oh well, and I really don’t feel in the mood to be a pirate but I have no choice, I suppose. Keeping the eye open and using it hurts more than anything. God, I think I’m going to throw up now.

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I saw a squished ladybug on the sidewalk today. I looked at the dead little thing and thought, I know how you feel, little one, I know how you feel.

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