Low On Drugs

I am on Vicodin, which feels remarkably like being on Benadryl. Why, one might ask? Because my dysesthetic pain was absolutely awful at 5:30 this morning, and then it kept coming back. Horrible. Seriously horrible. I emailed Dr. Rick, who had me come see him this afternoon. He prescribed amitriptyline and Vicodin.

Amitriptyline is an old anti-depressant that apparently is not really used an an anti-depressant anymore. It can help some people with nerve pain. Hopefully me. And hopefully without bad side effects. I just read some about it online... looks like my dosage is pretty low, nowhere close to what would be prescribed for depression.

I am supposed to take Vicodin as needed. I questioned dependence, but Dr. Rick said I would not become addicted. He is thinking of this as a way to get through coming down off steroids. (Because I told him that the pain began the day after my first course of steroids, and now it has worsened and added new territory while coming off my second course of steroids.) Also that I am using it to take the edge off pain. I don't know. But I have been in a lot of pain, so I am willing to give it a go.

Blurred vision is listed as a side effect of both amitriptyline and Vicodin. I did laugh a bit at that. My vision still stinks from the steroids. Dizziness and sedation are also listed under both. So we'll see. I was dumb, because I took the amitriptyline with dinner instead of an hour before bed. Ugh. Need to improve at following directions. My thinking/judgment was maybe not the best today.

So although I have taken both meds, I think the sedating effect I feel right now is probably from the Vicodin. I do not think the ami is going to work that quickly. And I only took 10 mg. Vicodin is a classic drowsy-maker, right? More likely that is the culprit right now.

So that kind of stinks. I absolutely could not take this and go to work. Too tired and dizzy--my balance is worse. Maybe I'll try cutting the pill in half next time. I am not sure it even helped with the pain. Well, I guess it helped. Just not a whole lot.

And Dr. Rick is still stumped on my vision problem. He told me to take 10 mg of prednisone today and tomorrow, then done. So I will end up skipping two days of 20 mg, which is what I would have taken today. Probably will not make much of a difference, but hopefully my eyes bounce back soon. It has not really bothered me, because I know where I am going here in town. But at one point today, I was looking for a building, and struggling with reading names and seeing numbers was frustrating. I think the only reason I am tolerating it well is because I assume that it will get better soon.

Well, on to my daily data:

Sensory:

-Pins and needles: 8, mixed with the freezing/burning pain
-Tingles: 0
-Dysesthetic pain: 9, only because I hesitate to put a 10 on anything. But wow, it was take-your-breath-away pain. And some in my bottom lip. You know, even my clothes make this pain worse.
-Paresthesias: 0, don't remember any, but I mostly remember feeling pain.
-Numbness: 2, same as yesterday. Tongue numbness is so nutty.
-Vision: 4, same as yesterday I think--a bit worse?
-Nerve pain: 6
-Hearing: 1

Motor:
-Walking: 2
-Sore muscles: 1
-Fine motor: 3
-Weak muscles: 3
-Spasticity: 3, and I did not do my stretches. Forgot.

Cognitive:
-Processing: 2
-Memory: 0
-Attention: 1
-Confusion: 2

General:
-Fatigue: 5 not counting right now--drugged right now
-Balance: 4 (but 6 right now on the Vicodin, lol)
-Sleep: 5, almost 7 hours but got up several times. Couldn't go back to sleep after my roommate's alarm woke me at 5:30.
-Bladder: 0
-Proprioception: 2
-Swallowing: 0
-A: 6
-B: 6

Emotions: Kind of stressed and upset about the pain, but not terrible. No tears. ;)

Blood Sugar Normal

Word of the day = pain.

And confusion. My doctors do not understand why my vision is blurry. My a1c (long-term blood sugar) test came back normal. Back to the drawing board. I emailed Dr. Rick, and he said to go straight to 10 mg of prednisone tomorrow and the next day, then done.

Sensory:

-Pins and needles: 7, feet were awful, hard to tell this from the burning dysesthetic pain
-Tingles: 1
-Dysesthetic pain: 8, absolutely horrible in my left butt all the way down through my foot (following the sciatic nerve), and now the right, too. And some in my bottom lip. And on the side of my left hip. Luckily this did not last all day, because I would have been in tears. It came and went, so I did not get pushed past my breaking point. I have a pretty high threshold for pain, but this is bad stuff.
-Paresthesias: 2
-Numbness: 2, feet and that new strip on my forehead (sometimes), as well as down the center of my tongue--maybe a little right of center
-Vision: 4, maybe a little worse than yesterday
-Nerve pain: 6, some plain old nerve pain down my left leg
-Hearing: 1

Motor:
-Walking: 2, stiff but ok
-Sore muscles: 2
-Fine motor: 2
-Weak muscles: 4
-Spasticity: 5, PT gave me some stretches, including one for my poor shoulder

Cognitive:
-Processing: 2
-Memory: 1
-Attention: 2
-Confusion: 0

General:
-Fatigue: 7
-Balance: 4
-Sleep: 5, got 6.5 hours, I think. I was up at 5:00 again.
-Bladder: 0
-Proprioception: 2
-Swallowing: 1
-A: 5
-B: 0

Emotions: I was okay until after my two-hour (mostly waiting) PT appointment. I was over-tired and cried when I got home. Just exhausted. But I bounced back and had a good evening, despite the extreme pain.

Great Day!

I had such a good day today; I think it was my best day all month! I only got dizzy and sickly a few times. I had tons of help at church with interpreting, so I did not wear myself out.

Sensory:

-Pins and needles: 6, much worse in my feet and legs :(
-Tingles: 0
-Dysesthetic pain: 7, legs and (NEW) palms of both hands
-Paresthesias: 1
-Numbness: 2, the usual in my feet and (NEW) across my forehead
-Vision: 4, same as yesterday
-Nerve pain: 5, left leg, right bottom lip (random)
-Hearing: 0

Motor:
-Walking: 2, better!! Problems with stairs and stuff... whatever. Regular walking is so much better.
-Sore muscles: 6
-Fine motor: 2
-Weak muscles: 3, much better today
-Spasticity: 5, still having a lot of trouble with my right upper arm. Left too, but the right is much worse. And I have spasticity down the back of my left thigh. Boo. It is pretty painful, actually.

Cognitive:
-Processing: 1
-Memory: 1
-Attention: 1
-Confusion: 0

General:
-Fatigue: 2, yeah! That is what happens when my MS is not giving me too much of a hard time, the steroids are not making me sick, Avonex is not making me sick, and I do not need to do anything strenuous. Whew. A lot goes into feeling good. It is awesome when it all comes together!
-Balance: 4
-Sleep: 4, I probably got 7 hours altogether, although I did wake up a lot. Couldn't sleep past 6:00 am, but I stayed in bed until 9:00. Ah, afternoon church.
-Bladder: 1, it was spastic during the night but pretty good all day
-Proprioception: 2
-Swallowing: 0
-A: 3
-B: 0

Emotions: Calm. Fine.

Blessings

It is so neat how things work out sometimes, and I know that they work out because the Lord takes such a strong interest in my life. I know that he loves me very much.

And I know that blessings come from trying to do the right thing. Or doing the right thing!

I am in debt right now from buying my home and from medical bills. I never expected to buy a home last year, but it ended up happening. I signed knowing that I could not exactly afford this place. And oddly, the bank signed knowing that I could not exactly afford this place. I was way over ratio. Nevertheless, I paid my tithing and in December began paying fast offerings as well. About two weeks after I paid my first fast offering, I got a call from the fantastic guy who did the finances on my purchase last summer. He explained that interest rates had dropped enough that it would be worth my while to refinance. When I looked at the numbers, he was absolutely right. I would recoup the fees after a few months and then be able to save money--and by "save," I mean put it toward my debt.

And then he commented that I had a huge balance in my escrow account. He had run the numbers over and over, and he could not figure out how I had so much money. I will get that back after that bank figures things out.

So financially, I may be able to breathe easier soon. I am considering the sparrows and lilies, trusting that the Lord will take care of me.

After having a conversation with the ophthalmologist about the possibility of blood sugar causing my blurry vision, I came home just in time to receive my visiting teacher... who has diabetes run in her family and turned out to be an expert on nutrition, at least related to managing blood sugar.

And of course my job has worked out in so many ways, I cannot begin to say. I am really trying to get everything done but still feel like I am drowning. My head keeps going under, and I keep fighting to keep my little nose above the waves. But I am feeling better about it since getting a blessing that told me to do my best at work and the Lord would make up the rest.

I am trying to worry less and trust more.

Got Pretty Sick

I had a fine morning, but I got pretty sick this afternoon. I did not manage my medication regimen well enough, I think. When I was able to get back on track (evening), I did better. The problem is that I had taken one Aleve at 5:00 am and another one at 10:00 am. I started hating life around 1:00, but it was too early to take another one. I ended up taking Tylenol and then just suffering until I could take two Aleve together at 5:30. Around 6:30, things perked up.

And I did not hydrate well enough. I guess that I did not have an appropriate level of respect for Avonex this week. Lesson learned. (Maybe.)

Sensory:

-Pins and needles: 4
-Tingles: 1
-Dysesthetic pain: 4
-Paresthesias: 0
-Numbness: 3, exactly the same as yesterday
-Vision: 4, worse and better... hmm... why does it get worse? Or why does it get better. Not that "better" means close to normal.
-Nerve pain: 4
-Hearing: 2, bad early this morning! Fine all day. The tinnitus lately has been more broad spectrum rather than a more periodic sound (it used to be a very narrow band of noise around 4,000 Hz).

Motor:
-Walking: 3 this morning, but it became 7 for part of the afternoon. Today was definitely the closest to collapse I have been.
-Sore muscles: 7, and that is on Aleve--my poor shoulder and upper arm
-Fine motor: 2
-Weak muscles: 5, although it was 8 at one point (see Fatigue). I could barely walk.
-Spasticity: 6, range of motion is limited in my right shoulder. Plus the usual with my legs, but not all day.

Cognitive:
-Processing: 1
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 6, although it was 9 at one point. I actually sat on the floor in the grocery store. Twice.
-Balance: 4, seriously walking sideways in the dark and needing to hold on to things to stay upright. Leaning toward the right (better than the wrong!)
-Sleep: 4, I got 7 hours, though not all at once. Good thing I did not need to get up early, because I was up at 5:00, fell asleep again around 7:30, woke up, slept some more, and final got up at 9:00. Nice.
-Bladder: 0
-Proprioception: 2
-Swallowing: 0
-A: 7
-B: 5

Emotions: I broke down and cried twice today, just feeling so horrible. This afternoon was really bad. And I was irritable--that happens when I am very sick. I was so dizzy, I could not even get up for about two hours. And just feeling like I had the flu. No fever, but a little bit of chills. Anyway, all that made me emotional for some reason. Or maybe the steroids messed with my emotions? I don't know why now, when I am down to 40 mg on the taper. Whatever the reason, I did have a rather emotional day.

10 Down, 7 to Go

Today was my 10th day on steroids (I am down to 40 mg now), and it was pretty much like the last few. I did have more energy today, despite sleeping poorly yet again. So that was good. I also did not do anything physically strenuous.

My symptoms are still kind of rough, especially vision and joint pain. If anything, my vision is worse today. And I have muscle pain... and spasticity? I definitely have spasticity back in my legs, but I am not sure about my arms.

I seem to be hot a lot lately, or warmer than others around me. I have not been nearly so shaky today as the last week. I had a few bad attacks of vertigo, but just a few. Dizzy sometimes, but less than the last week. I think things are moving in the right direction.

I hate to complain and complain, but it has been really helpful having these comments when trying to reconstruct when symptoms or side effects began and ended. I am planning to send some bullet points to my neurologist and internist when all is said and done.

Alright, I am tired and hoping to sleep, so I will get to my daily data.

Sensory:

-Pins and needles: 4, both legs, also on my butt super early this morning (like 4:00 am)
-Tingles: 1
-Dysesthetic pain: 7, mostly left leg, except for the horribleness in my butt (well, the side of it--sciatic nerves) that was more like a 9 and was bilateral, keeping me up in the wee hours of the morning
-Paresthesias: 0
-Numbness: 3, some tongue problems again, as well as top of right foot and the other usual areas. Left fingertips also having some issues.
-Vision: 4, getting worse because the TV is pretty blurry now. I can make out the closed captions, which are very large, but they are hard to read. And oddly, the pictures on the wall look 3D.
-Nerve pain: 6, mostly left upper back leg--sciatic nerve
-Hearing: 0

Motor:
-Walking: 4, still pretty stiff from the steroids, not sure how much from spasticity, balance, etc. Lots going on.
-Sore muscles: 8, backs of legs (especially tendons behind knees and left hip), backs of arms/shoulders especially right
-Fine motor: 3
-Weak muscles: 5, right weaker than left, at least for my arms. I just tested and can lift my laptop with my left arm but not my right. My legs seem better, though. Maybe because I rested them so much?
-Spasticity: 7, way on up :(

Cognitive:
-Processing: 1
-Memory: 0
-Attention: 0
-Confusion: 0

General:
-Fatigue: 5
-Balance: 4, especially hilarious in the dark
-Sleep: 6, about 6 hours
-Bladder: 0? Did not pay attention
-Proprioception: 2
-Swallowing: 0
-A: 0
-B: 0

Emotions: Mostly okay. A few grouchy moments. Yesterday I would have had something to say--I cried several times. I probably need to break down and cry, let out some stress from the week. I am probably disappointed that the steroids have gone the way they have. I did hope for better this time.

Reason for Vision Problems?

Yesterday was such a long day, I did not even think to blog until it was nearly 10:00, and I was tired. I was tired and feeling sick--worse and better. I cannot tell how much is related to the steroids, the MS relapse, or even lack of sleep.

I do not know what to do about my sleep problem. I mean, obviously I am stuck waiting out the steroids, which may be a while, because I still have a week left on the taper. However, I hopeful that it will get better before then, that my body is still working on the large doses of steroids that I took Wednesday-Sunday. I keep thinking, "Tonight will be the night--I will sleep a full night again." Nope, not yet. I went to bed around 10:00, woke up once and went back to sleep (yay!), and then woke up again at 4:00. I have been up since 4:00 am. Darn. I gave up around 5:30 and came downstairs. I have reports to write, so I will get started early and maybe rest later.

So, the eye doctor. I saw Dr. Mindy yesterday for a record-breaking five-hour appointment. Obviously some of that was wait time, but I did have several tests, as well as photography. And she called in a neuro-ophthalmologist to look at me.

You will not believe what these geniuses concluded: My vision problems are probably related to the steroids. Yeah. No kidding. Take steroids, vision goes blurry for a week. Gets better. Four months later, take steroids, vision goes blurry. Believe it or not, I had made the steroid-vision connection on my own.

I might have 6th nerve palsy causing a bit of strabismus, or I might have increased intracranial pressure (although my eye pressure are okay), but most likely problem seemed to be with blood sugar.

That was what I thought the last time I did steroids! I remember that I asked my dad about it, and he said that I had not been on steroids long enough for them to affect my blood sugar that much. Dr. Mindy said that with the high doses I have been on, it is possible. And that they are not suggesting my blood sugar is 400 (which is apparently an insanely high number), but that it is elevated enough to cause osmosis in my eyes, retaining water in the lenses.

Now, this diagnosis is not certain at all. The neuro-ophtho, Dr. Sammy, suggested that I have a test called a1c, which he said can estimate your highest blood glucose level in the past three months based on the amount of glucose tagged to your hemoglobin. Something like that. I am hoping to get the test today.

About five minutes after I arrived home, my VT, Debbie, arrived. It turned out that she had had gestational diabetes with all of her pregnancies, seriously enough that she was injecting insulin during the last one. So she was able to share a lot of helpful information about blood glucose, insulin, and nutrition.

When she described the crash that happens when the glucose level rises quickly and the body overproduces insulin, it sounded familiar. That happens every time I eat candy or dried mango or other sugary stuff. I noticed that my senior year of college, so about six years ago. That kind of fatigue was not as severe as what I am experiencing now, and it did not come along with dizziness, shakiness, or feeling SICK. But with steroids to "help" things along, who knows?

I am looking forward to getting that a1c test and finding out if my bloody sugar has spiked at some point recently.

Dr. Sammy and I discussed my future with steroids. He pointed out that they are a "double-edged sword," both helping and hurting. Certainly seems that way. I was concerned that my vision is worse this time than the last time I did steroids, despite taking half the dose. He said that I can still take steroids in the future, but I might need monitoring. Dr. Mindy said that typically people are monitored by their PCP during a course of steroids. Blood pressure, etc. Grr. I am not monitored except by myself!

If I find that my blood sugar has been high, I may need to do that finger stick thing and monitor it, at least when I am on steroids. And I might need to watch my nutrition. As Debbie pointed out, that will probably help anyway. She was teaching me about eating complex vs. simple carbs. And about eating carbs together with protein and fat to keep the glucose level more even. And smaller meals/snacks. And being extra careful in the morning. Well, I was careful this morning. I saw a donut... no. I saw bread... no. I saw bagels... no. I saw apples... no. I did NOT feel like cooking eggs at 5:30 in the morning. I found a frozen egg and cheese biscuit... winner! 

I am glad that I got up. There is no point lying in bed when I am not tired enough to sleep. It seems like my body wants to go infant style: Sleep five hours at night, up for a few, down for a morning nap, up for a while, back down, get cranky... Pain was kind of keep me up for a while--butt pain, which is hilarious. I mean, it is horribly painful, but the concept of butt pain is funny. Anyway, that burning/freezing nerve pain in my sciatic nerves (which are basically on the sides of your butt) and some pins and needles on my butt kept me up for a while. Then I realized that I was thinking about stuff because I was just not tired enough to sleep. Blah. I think I am going to begin compiling a list of the pros and cons from this round of steroids.

Oh, it is raining! I can hear it. How nice. :)

Steroids Might Be Worth It

I had kind of a rough start, then things got so much better. I thought that I was finally done with the steroid sickness! Nope, it hit again around noon. Oh, well, at least I had a couple of good hours. And I enjoyed them!

I had no vertigo all morning, but it came back in the afternoon. That was disappointing. But my vision is the same as yesterday. I had emailed Dr. Rick and Alyssa about it last night, and they emailed me back (also last night--wow!) to say that I need to see an ophthalmologist, because blurred vision is not a typical side effect of steroids. The upshot is that I have an appointment with an eye doctor (well, third-year resident) tomorrow, Dr. Mindy.

If I can just get through the side effects of the steroids, I think it will be worth having them. I do still have vertigo, joint pain, puffy face... and developed acne today... can't sleep... And of course the vision problems. But my sensory symptoms are back to what they were before this relapse, and my spasticity is way down again. I think when I get enough rest and come down off the steroids, I will be back to where I was. Better than having disability accumulate. Much better!

Sensory:

-Pins and needles: 1
-Tingles: 0
-Dysesthetic pain: 3
-Paresthesias: 0
-Numbness: 2
-Vision: 4
-Nerve pain: 2
-Hearing: 1

Motor:
-Walking: 2
-Sore muscles: 1
-Fine motor: 3
-Weak muscles: 6
-Spasticity: 2

Cognitive:
-Processing: 1
-Memory: 0
-Attention: 1
-Confusion: 1

General:
-Fatigue: 7
-Balance: 4
-Sleep: 8, less than five hours of broken sleep
-Bladder: 1
-Proprioception: 1
-Swallowing: 0
-A: 3
-B: 0

Emotions: I have really tried to stay centered, and I think it has helped. I did get a bit teary-eyed this evening and ended up getting a blessing from my home teacher. I am glad that I accepted his offer. Good decision.

Still on the Steroid Train--With Double Vision

Double vision is seriously so weird. Still coming down off the steroids--rough. My vertigo was bad a few times today. Last night, my bladder decided to work again, so I got up a half dozen times. I could not sleep until around 2:00 am anyway. Who knows why. Just dumb insomnia, and I think I was too warm. I ended up sleeping two hours, getting up, two more hours, maybe another hour. I do not know how I was functional today, except that I took it easy and did not move my head quickly.

This time I have tried to surrender to the steroids. They have a big impact on me (negatively), and there is nothing I can do about that. If I decide to accept them, I am signing up for whatever comes along. Joint pain, vertigo, insomnia, and all the rest. The vision issues, ugh. The just feeling SICK. 

It is easier to ride it out this time, because I have been through it before. The first time I had steroids, back in September, I did not know what to expect. Actually, I expected them to make me feel better, and they did not. And I was not expecting to feel MUCH worse after stopping the steroids. 

Some things are worse this time around, but overall I have handled it well. I hope I have reached the peak of the symptoms now--today is the worst day so far. Last time I had steroids, I finished them on a Tuesday and had a horrible time Thursday night through Saturday. This time I finished on Sunday, so two days later... that is today. So I guess we will see how tonight and tomorrow go.

Oh, one thing I have had a lot of today and yesterday is back pain. It is weird back pain. 

Sensory:

-Pins and needles: 4
-Tingles: 0
-Dysesthetic pain: 4
-Paresthesias: 0
-Numbness: 3, uh oh, left side of tongue tingly/numb--that is new. Hopefully a one-time thing. And my legs and arms were sometimes numb or semi-numb, blah.
-Vision: 4
-Nerve pain: 4
-Hearing: 1, very fuzzy this morning, muffled. But fine all day.

Motor:
-Walking: 2
-Sore muscles: 1
-Fine motor: 4
-Weak muscles: 5
-Spasticity: 2, except for one nasty cramp on the back of my left leg/butt

Cognitive:
-Processing: 2
-Memory: 0
-Attention: 1
-Confusion: 2

General:
-Fatigue: 6
-Balance: 4
-Sleep: 8, less than five hours of broken sleep
-Bladder: 2
-Proprioception: 1
-Swallowing: 1
-A: 0
-B: 5, problematic this morning, better this afternoon

Emotions: I am working to remain centered and spiritual.