Yesterday

I saw the musical Chicago at a local dinner theater place with some friends yesterday. One of our friends was in the show. It was great! I had a wonderful time.

Sensory:

-Pins and needles: 1

-Tingles: 2, in my arms and hands--I don't remember specifically

-Paresthesias (burning): 0. Wow. I do not think I had any.

-Paresthesias (other): 0

-Numbness: 1

-Vision: 1, just a few floaters in my right eye

-Nerve pain: 2, down left leg

Motor:

-Gait: 2

-Sore muscles: 3, spasticity in right leg increasing. Pain in muscle tendons. Also pain at bottom of right quadriceps when I woke up. MS is so weird.

-Fine motor: 2

-Weak muscles: 3

-Twitches: none

-Spasticity: 4, back of right leg. Two tendons feel like tight ropes.

Cognitive:

-Language processing: 2 for expressive. Receptive fine.

-Memory: 4, this would be short-term memory. I always forget when I'm doing, but 90% of the time it comes back to me. I think. Unless I'm forgetting what I forgot. ;)

-Attention: 0

-Confusion: 3

-Impulsivity: 0?

General:

-Fatigue: 5, and I did not do much during the day

-Balance: 4

-Sleep: 3, got 7.5 hours

-Bladder: 4 sometimes--hard to get started, blah blah, the usual

-Anxiety: 0

Nights Are Worse

Nights are worse for sensory symptoms. Burning, pain, tingles, etc. So often things worsen after I blog and go to bed. I wonder if Murphy's Law covers that. I'm still sleeping pretty well, though. I'm worn out every day from working and hanging out on the couch all evening.

OK Day and Acthar update.

Today... meh. It was okay. Honestly, I don't feel very well. I'm super tired right now. But I did get through work must better than, say, a month ago. So I know I'm doing better. Just not as well as late last week. The ups and downs of MS.

Sensory:

-Pins and needles: 1, they're rocking my left thigh right now.

-Tingles: 3, sometimes in my arms, like traveling toward my hands. Elbow to wrist. Narrow lines, not the whole thing. Um, just realized also in my right leg.

-Paresthesias (burning): 1, yeah!

-Paresthesias (other): 0, didn't notice any

-Numbness: 1, same old, same old

-Vision: 2, had floaters in right eye this morning, then noticed them in left while driving. Probably because brighter light. I can tell which eye by closing one. I had some blurriness today, but not bad.

-Nerve pain: 3 down my left leg

Motor:

-Gait: 2

-Sore muscles: 1

-Fine motor: 2

-Weak muscles: 3

-Twitches: none

-Spasticity: 2, back of right leg. Right! Come on, not new problems. It's near my knee, in the tendons.

Cognitive:

-Language processing: 1

-Memory: 4

-Attention: 1, people laughed at me during a meeting today when I did a "wait, what?" about what was just said

-Confusion: 3

-Impulsivity: 0

General:

-Fatigue: 4, more like 6 now

-Balance: 4, when I get up in the dark, it's HILARIOUS. Like a drunk person. Not that I know drunk people.

-Sleep: 3, got 8 hours

-Bladder: 3, OMG (G=gosh) I keep forgetting to comment that I had dark red flakes in my urine. This was about a week ago. It looked like the crap that passed before my kidney stone. Wait, maybe I did blog this already. Whatever.

-Anxiety: 0 all day until I opened the Acthar info kit and watched the DVD on injecting yourself. Then I would say it was a 3. Partly because of injecting myself. Partly because Dr. Rob made me wonder if I should take Acthar. My insurance company denied it yesterday. 

I spoke with an Acthar rep today, who shared that my insurance company denies every claim for it, that they always have to appeal. I looked up information online. It looks like Acthar is about the same as or slightly better than IV Solu-Medrol for treating MS flares. A few people had reactions to it and had bad experiences, but you can also find that with Solu-Medrol. Me, for example. Some people were neutral--it was about the same as IVSM but costs so much more. Most people raved about how much they loved Acthar, that they would take it over IVSM any day.

The question is whether I'm in a flare or if I'm experiencing the effects of not treating a flare and having permanent damage from it. If so, Acthar might not help. But I suppose it will not hurt. And I am still having new symptoms.. and my cognition is getting worse... so why not try it, I guess.

Great Day's Numbers

Sensory:

-Pins and needles: 1

-Tingles: 1

-Paresthesias (burning): 1 :) Just showed up for a little while this afternoon as I was due to take my next pill

-Paresthesias (other): 1 some random vibrations in my feet depending on position

-Numbness: 1

-Vision: 1, definitely have less floaters, just hard to focus sometimes

-Nerve pain: 2, woot woot

Motor:

-Gait: 2?

-Sore muscles: 0

-Fine motor: 3, realized that opening packaging and unwrapping things count under this. Oops.

-Weak muscles: 3?

-Twitches: none

Cognitive:

-Language processing: 3

-Memory: 4

-Attention: 1

-Confusion: 3

-Impulsivity: 1

General:

-Fatigue: 4, worked full 8 hours and only hit a low for a few hours in the evening--a lot of the day I felt normal

-Balance: 4

-Sleep: 3, got 7.5 hours

-Bladder: 3.. or 4.. was really trickly this afternoon

-Anxiety: 0

Grieving: I'm feeling frustrated with my cognition today. Forgetting things sucks. Losing thoughts sucks.

So cognition was not good today, but everything else was. Um, except bladder and balance, which remain unchanged. I think gabapentin is totally rocking with my sensory stuff and my spasticity, and those impact pain. And it helps with fatigue? Or very coincidental. I'm not complaining.

Today's Numbers

Sensory:

-Pins and needles: 1 for the most part, except that they show up quickly (I would severity 4) if I sit a certain way or prop my feet on the coffee table--right foot is worse, but left will be through the leg as well as the foot

-Tingles: 5 for a while this evening, and I thought I was getting sick. But then I started feeling better, so I have no idea what to think. Aside from that hour or so, tingles were a 1 today.

-Paresthesias (burning): 3

-Paresthesias (other): 1 some random vibrations in my feet depending on position

-Numbness: 1

-Vision: 1, still have floaters but haven't bothered me too much--getting lighter?

-Nerve pain: 3 down my left leg

Motor:

-Gait: 4

-Sore muscles: 1 (funny, didn't notice it much today if I had it)

-Fine motor: 1

-Weak muscles: 4

-Twitches: once today--leg but now I forget which. Probably left.

Cognitive:

-Language processing: 0

-Memory: 4

-Attention: 1

-Confusion: 4, and I think I have been under-rating this for a while. I get confused all the time. Almost every time I start to do something, I forget what I was going to do. I have to be vigilant not to take the wrong freeway exit. That kind of thing. Today I ordered too many sushi rolls (I did have a good reason for eating out on Sunday), and then my friend told me hello, we normally share two and you ordered six for three people. Uhhh... I was thinking that we always order two each. But when she said it, I realized she was right. We do share two. It was just sushi, so not a big deal, but the little things are adding up.

-Impulsivity: I don't know, because I didn't drive anywhere. ;)

General:

-Fatigue: 7 all afternoon and evening wanted to SLEEP until around 8:30 perked up. WEIRD!

-Balance: 4, going down stairs is pretty hard. My friend noticed today at church as I came from the podium.

-Sleep: 2, got 8.5 hours

-Bladder: 3, same old same old except also cloudy this evening

-Anxiety: 0

Grieving: Reading some in "MS for Dummies" about it. Reminded me how I feel about it... which stirred up those feelings. But I'm not examining them now, because it's after 10:00 pm. If I can't sleep, I'll work on grieving. {rolling my eyes} Is this really my life?

Fantastic (But Tiring) Morning!

Well, things turned around yesterday afternoon. I ended up feeling better and was able to go to a practice for a small choir piece for church today. I was hesitant to accept the invitation to sing, knowing how unreliable I am. But when I found out that they would have two people on each part (four-part women's piece), I agreed to do it. At least they wouldn't be completely left in the lurch if my body pooped on me today.

So today I had a non-member friend at church with me, so I was trying fill her in ("They're going to bless the baby.. it means give her a special blessing and officially name her. Stake Relief Society president means etc. etc.") while interpreting for my deaf friend. And today the interpreting was a little different. I sign interpreted most of the meeting, except when my friend gave a talk. Then I voice interpreted while she signed from the podium. That was great but a little stressful, as she signed very quickly. Like I talk quickly when I am nervous. But I made it through. Nobody would know if I missed something anyway.

I interpreted most of church, except for 27 blissful minutes of rest while watching a video that had closed captions. Yeah!

I am so, so tired. Weary. My feet have burned mildly off and on all day, but nothing too bad. My friend retardified a few tired, but not too bad. Honestly, I've had a good day, especially considering how much work I did. My arms were dead after church!

Right now I really want a nap, but I'm going to push on through. Go to bed early if I need to.

So I had a great time at church and am soooo happy for the gabapentin, which makes me functional.

Bad Start

I got at least eight hours of sleep, but I am tired. And weak. The tremor is back in my hands, especially my pinkies. They don't move smoothly to abduct and adduct. They shake and jerk. And my legs are spastic, mostly the left one but definitely some in the right one now. Oh, brother. They are kind of sore in the lower tendons of my quads. And the burning is not completely controlled. It was kind of bad when I woke up but better now. Both feet. When I say better, that doesn't mean it's gone... just better. And some pain in my sciatic nerve going through my left glutes. That would be my butt. That hurt when I woke up! Usually it's okay when I wake up and gets worse as the day goes along. Oh, man, I want to sleep.

Sometimes my body demands that I lie down. Maybe I'm at church or at work or whatever, and I just feel like I can't stand or sit anymore; I must lie down. So tired. That's how I feel now. I didn't have any of that Monday-Thursday this week, which is why I thought I was getting better. Friday a few times. Wow, today it's worse. Just so fatigued. All of my limbs feel so heavy.

Wah wah wah.

Hope I'm Not Getting Worse Again

No word from the MS Center. I will call on Monday. Better put that on the calendar, with my brain being the way it has lately.

Today has been the worst this week. And I am getting worse as the day goes on. I hope I'm not going into a bad weekend.

Sensory:

-Pins and needles: 1 for the most part, except that they show up quickly (I would severity 5) if I sit a certain way or prop my feet on the coffee table--right foot is worse, but left will be through the leg as well as the foot

-Tingles: 3, left leg, left hand, right hand

-Paresthesias (burning): 2, just some in the morning and recently. It seems like it's when I'm at the edge of taking another pill. (I'm leaving that odd language in. Going back to check, I meant close to taking another pill. That seemed not exactly right but an acceptable variant when I wrote it.)

-Paresthesias (other): 1, a weird feeling in my lower left back that feels similar to pins and needles but somehow like movement

-Numbness: 1, still that small patch on my foot. But sometimes my fingers feel semi-numb, which is really annoying. Left hand. Oh, and sometimes I lose feeling in my left leg, for example right now. My feet are propped on the coffee table with straight legs, left crossed over right. Oh and my arms start to go numb if I hold them up. But that's been for a few months now.

-Vision: 2

-Nerve pain: 3 down my left leg

Motor:

-Gait: 2 most of the day, but 4 this evening

-Sore muscles: 5, I think I've done too much the last few days

-Fine motor: 3

-Weak muscles: 5

-Twitches? My foot jumped unexpectedly.

Cognitive:

-Language processing: 2

-Memory: 4, my short-term memory is not good today

-Attention: 0

-Confusion: 1

-Impulsivity: 2 (adding a new category, sadly)

General:

-Fatigue: 6, and I didn't do a lot

-Balance: 4, almost fell today at work, getting up from a chair with my laptop bag on my shoulder

-Sleep: 2, got 8.5 hours

-Bladder: 3, still get HIT with urgency to go, some trouble getting started, weak stream

-Anxiety: 0 I think--I don't remember any

Grieving: I began writing my story. Maybe I'll publish a book, as my friend suggested. I'm counting that as grieving. I'm starting to feel a little angry with my friends on the MS forum, which doesn't make sense.

And Now We Wait

I dropped off my paperwork and MRIs at the university hospital MS center today! The secretary said she will call me tomorrow or Monday to let me know if they can get me in sooner. Of course I called Dr. Rob's secretary, so she can bug them.


Sensory:

-Pins and needles: 1

-Tingles: 3, trying to remember where... left leg and right arm, I think

-Paresthesias (burning): 2

-Paresthesias (other): 0

-Numbness: 1, I guess--I haven't check my foot lately

-Vision: 2

-Nerve pain: 4, I'm adding this category because there's a difference between the burning and other nerve pain. The nerve pain in my left leg has been significant sometimes--down my sciatic nerve, especially in my butt and lower leg.

Motor:

-Gait: 2

-Sore muscles: 4, but it's really more the tendons than the muscles in my legs

-Fine motor: 3

-Weak muscles: 4

Cognitive:

-Language processing: 3

-Memory: 3

-Attention: 0

-Confusion: 2

General:

-Fatigue: 6, but I did a lot

-Balance: 3

-Sleep: 4, got 7 hours (boo)

-Bladder: 3, I don't know why I downgraded it yesterday. It really hasn't changed.

-Anxiety: 2, when I was going to the MS Center. Nervous about how to get my packet to the right person, nervous that they would get me in soon.

Grieving: Honestly, I think I've been pushing it aside. Today I was too busy to work on it.

Listening to the Spirit Makes My Life Better

On Monday morning, I was running late as usual, and I grabbed my breakfast and my morning pills to go. I tossed a gabapentin in my lunch bag, also as usual. I take it three times each day now.

Then I had the thought that I should put a few gabapentin pills into the little container I keep in my purse. Ibuprofen pills live there. Immodium did until I began needing it so often that it was just easier to keep the Immodium bottle in there. I thought the gabapentin pills would be too large for the little container, but a few of them fit just fine.

On Tuesday, when I held and comforted Little Doll, I stayed very late at her school. I had planned to run home for lunch after that and take my pill. I ended up not having time, so I had to skip lunch. But I can't skip my pill! I mean, I'm sure I wouldn't die. But I really shouldn't skip it.

I remembered that little container of pills, which now held three gabapentin tablets. When I left Little Doll's school, I took one and went straight to my next stop.

Because I had listened to the spirit the day before, I was able to relax and comfort Little Doll (and myself) without worrying about my medicine. No stress. Just rocking.

Great Day

I had a great day. I saw some students who are totally in my fan club this morning. And I met a friend for lunch and had a GREAT time with her!

Sensory:

-Pins and needles: 1

-Tingles: 3, right arm

-Paresthesias (burning): 1 all day until the last hour. Evenings are always worse. I'm so happy that it's better than it was, but not too happy that it gets worse in the evenings and makes it hard to sleep. Right now it's a 3, but it's increasing.

-Paresthesias (other): 1 vibration in my right foot. I've had this happen off and on for over a year.

-Numbness: 1

-Vision: 2, still got the floaters. Sometimes I don't notice them, but I don't think they've gone away. They've been around for a month. I notice them in brighter environments. I think they are multiplying.

Motor:

-Gait: 2

-Sore muscles: 3

-Fine motor: 3

-Weak muscles: 4

Cognitive:

-Language processing: 3 mainly for written language but also spoken

-Memory: 3, I keep forgetting what I'm about to do

-Attention: 0

-Confusion: 2

General:

-Fatigue: 5, I think gabapentin helps with this--or I'm getting better

-Balance: 3

-Sleep: 4, got 7 hours

-Bladder: 2

-Anxiety: 1

I am removing vertigo from the list. :)

A Little Doll Was Just What I Needed

I work with preschoolers. I was at the school of my favorite little girl this afternoon. (I guess I should be neutral, but I can't help it, she's my favorite.) We played, and she was just all over me today with hugs and wanting me to hold her, etc. Sweet. When it was time for the class to play outside, I buckled Little Doll into her helmet and sent her off to ride a tricycle. I sat at the little snack table to write a note to her mom. 

About five minutes later, the classroom assistant came in carrying a crying and bloody Little Doll. She had taken a tumble. The assistant sat her next to me and tried to clean the many scrapes and cuts on her face, hands, and arms. Doll was so brave. At one point, the assistant went to answer the door. When she left, Little Doll hung her head and just sobbed. She looked so tiny and fragile, alone in her chair. I know that feeling too well: I'm in pain, I'm overwhelmed, and all I can do is cry. 

I sat her on my lap and distracted her by talking about the artwork in the room, the birthday calendar, whatever came to mind. 

When she was mostly cleaned up and had an ice pack in her mouth, the assistant called her mom. I continued to comfort Little Doll, who was oozing a variety of bodily fluids. Poor kid. She leaned her little head on me. A parent volunteer started setting up the snack, so we moved to the teacher's rocking chair. 

And there we stayed, waiting for Mom for the next 20 minutes. Kids came and I fielded their questions. The assistant offered to take Little Doll, knowing that I should have left more than 30 minutes before. Doll refused to go to anyone else. I think a lot of adults (myself included) could learn something from her honesty, saying what we need rather than, "I'm OK..." Mom came in and found us still rocking, just being. She thanked me for staying to comfort Little Doll. 

Later Mom emailed me to thank me for snuggling Doll until she got there, that Doll loves me. 

This experience really touched me. It taught me that as much as I'm struggling right now, I still have so much to give. I think I got more comfort from this experience than Doll did. Sometimes we get just what we need to make our pain bearable, and I think that was true for both Doll and me today. 

Things May Be Moving More Quickly

I had my follow-up visit with Dr. Rob today. Well, well, well.

My September 29 brain MRI showed more lesions than the June 23 MRI. The radiologist compared the two MRIs, which was responsible of her. I appreciated that. She noted the periventricular lesion that my friend's radiologist brother had identified, so she is a better radiologist than the one who originally read the June 23 MRI.

The three decent-sized lesions on the June 23 MRI remain stable. There are small lesions scattered throughout my supratentorial brain, which is not new.

There were a bunch of new 1-2 mm lesions in my right temporal lobe, adjacent to the 4 mm lesion that was already there.

I was surprised to see nothing infratentorial, with my balance issues. I was sure there would be cerebellar lesions. I guess they're too small to pick up, or maybe my balance issues are related to Nerve VIII inflammation.

Dr. Rob and I discussed the likelihood of spinal lesions but decided to hold off on a 3T MRI of my spine until I see a specialist.

He does not want me to see Dr. Gabby again. He does not want me to take any medication she orders without first speaking with him. He wants to research ACTH more before I take it. He said that the only thing he knows about Dr. Gabby is that she "overtreated" one of his patients and made the person worse.

Dr. Rob is going to call the MS Center. He is not cool with me waiting until November 23. He wants me to see a specialist within the next two weeks. That is such a relief.

He wants me on a disease-modifying drug like yesterday. He researched that. :)

He checked my muscle weakness and found that my left leg and foot are still weak. This time he checked my arms and found that my left arm is weak, as well. I knew that. It crapped out on my while interpreting the Sunday before last. I left the chapel in tears.

Dr. Rob asked about the gabapentin, and I told him it was helping. And that I increased slowly--he apologized for not telling me to do that. He asked if I have muscle relaxers for the spasticity. No.

He said to call if anything becomes acute, especially balance. He is going to let me know how it goes with the MS Center.

And today's numbers.

Sensory:

-Pins and needles: 1

-Tingles: 3

-Paresthesias: 3 for the burning, honestly really good today. So happy with the increase in gabapentin.

-Numbness: 1

-Vision: 2, having more trouble today, especially reading signs. Tree leaves aren't so crisp.

Motor:

-Gait: 2

-Sore muscles: 3

-Fine motor: 3

-Weak muscles: 4, especially left leg, foot, and arm

Cognitive:

-Language processing: 2, I had trouble with verbal fluency at work today

-Memory: 2

-Attention: 0

-Confusion: 2

General:

-Fatigue: 5

-Balance: 3

-Sleep: 3, got 8 hours

-Bladder: 3

-Anxiety: 3

-Vertigo: 0. Still. Awesome.

Getting Better?

Sensory:

-Pins and needles: 1

-Tingles: 3, in my hands

-Paresthesias: 4, on the full 1800 mg dose of gabapentin today

-Numbness: 1

-Vision: 1

Motor:

-Gait: 2

-Sore muscles: 8 OMG my back was killing me this afternoon. Some flank pain but also weird upper back pain. Spasmy. Aside from that, I'd give the rest of my sore muscles maybe a 3 or 4. My spasticity was tons better today. I think the gabapentin helps with it.

-Fine motor: 2

-Weak muscles: 4

Cognitive:

-Language processing: 0

-Memory: 1

-Attention: 0

-Confusion: 1

General:

-Fatigue: 3--I went to work all day, came home for a while, then went out to the grocery store. I didn't drive to the grocery store in the evening--my friend did. But I walked around in the store. 

-Balance: 3

-Sleep: 3, got 8 hours--but maybe that's enough now?

-Bladder: 3

-Anxiety: 1

-Vertigo: 0, yeah, totally was the Nuvigil or the Solu-Medrol. My money is on Nuvigil.

Grieving: I cried a little today, not much. Felt anxious when I considered money. I mostly felt pretty normal emotionally. I suppose that is because I was feeling pretty well.

I forgot to mention that on Saturday I had some reddish-brown flakes in my urine. Definitely in my urine and not already in the toilet. It was the same color as my kidney stone before.. made me wonder. I passed stuff like that the day I passed my kidney stone, before the stone passed. Maybe I should be straining my urine, in case I have a stone and it doesn't hurt too bad? I don't know. I wish I had collected some of that to show the urologist. Whatever, I'll just tell her.

Oh, I'm seeing a urologist in about three weeks. Dr. Hilary wants me to get CDs of my CT scan from the ER in March, when I had my kidney stone. And the ultrasound from the urology follow-up shortly after that. All of my medical records related to that. So I have to get all that done. It's all such a pain in the butt. How am I supposed to get all this done and be sick (and hopefully get better)?

Sort of Rough Day But Happy

Sensory:

-Pins and needles: 3--right ankle/foot, left calf (outside)/ankle, left butt/thigh--sciatic nerve

-Tingles: 6--going up my some of my fingers and driving me CRAZY. Right thumb (middle), index (inside), pinky (outside), lateral side of hand (running down from pinky). Left pinky (outside), lateral side of hand, lateral half of palm. It started happening when I tried to cross stitch and has continued. And some in my left thigh.

-Paresthesias: 4, and I noticed the position of my leg can make it worse. It was 1-2 for much of today. Gabapentin increase is helping! I'm up to 1500 mg/day; tomorrow I will be on the full 1800 mg dose.

-Numbness: 2, my feet keep falling asleep easily. I guess that's numbness

-Vision: 2--probably a little worse from cross stitching

Motor:

-Gait: 3, but 5 on hardwood floors. Wow, that surprised me. I was at my bishop's house for conference, and they have wood floors in part of their home. It was much harder for me to walk on. Counting my blessings that my home has carpet (even though I wished for hardwood when I bought it--guess I got what was good for me rather than what I wanted).

-Sore muscles: 4 most of the day except for some 7 cramps in my left calf

-Fine motor: 4, cross stitching was hard

-Weak muscles: 4

Cognitive:

-Language processing: 1

-Memory: 1

-Attention: 0

-Confusion: 1

General:

-Fatigue: 6--I really wanted to sleep this afternoon, but I couldn't, because I was at the bishop's house. I probably wouldn't have even if I had been home. But wanted to. I felt worn out, and I don't think I did much. Hung out on the couch all morning except taking a shower and doing makeup and hair. Went to the bishop's house to sit and watch conference. I did play a board game that required brain power (and I won), and I think that wore me out. I was tired after that. Sat around and watched conference. Played Rock Band. Of course that really wore me out!

-Balance: 4

-Sleep: 3, got 8 hours

-Bladder: 3 I guess, still weak stream, and things just do not feel right

-Anxiety: 0

-Vertigo: 0, yeah!

Pretty Good Day

It has been a pretty good day. But then, I mostly sat on the couch all day, except for when I went to see my shrink. If I had had to work or do anything more, I think it would have been a hard day.

Sensory:

-Pins and needles: 2, feet and a little in the tongue. Forgot to mention that I had some in the tongue yesterday and I think the day before.

-Tingles: 2

-Paresthesias: 5, still feet and left leg on fire

-Numbness: 1--still right heel/side, and the right side of my tongue is sort of half numb

-Vision: 1, still not quite normal

Motor:

-Gait: 4

-Sore muscles: 6, the backs of my legs, especially behind the knees. Also my quads.

-Fine motor: 2

-Weak muscles: 4

Cognitive:

-Language processing: 1

-Memory: 4

-Attention: 1

-Confusion: 2, took a wrong turn on the way to the shrink because I forgot where I was going, then didn't know how to solve that problem--was late and frustrated

General:

-Fatigue: 6

-Balance: 4

-Sleep: 6, only got 6 hours

-Bladder: 3 I guess

-Anxiety: 3

-Vertigo: 0, thank goodness

Grieving: I cried through most of my counseling session. I cried while writing an email about my MS. I felt anxious about the medical bills. I felt anxious about the cost of the drug therapies I will need (without knowing how much they will actually be). I felt anxious about the logistics of needing a scooter or wheelchair at some point. I knew that people with only sensory symptoms early in the disease have a better prognosis. I felt disbelief and anxiety when I realized that I have symptoms that indicate disease activity in all three potential areas: cerebrum & cerebellum, motor nerve tracts, and sensory nerve tracts. http://www.msfocus.org/Symptoms-of-Multiple-Sclerosis.aspx

Grief

I started to wonder if I might be developing depression, and how I could tell the difference between grief and depression. I found an explanation of 15 warning signs of depression. It said that if you experience five of them in two weeks, you meet the criteria for clinical depression. I nervously went through them and found that I have experienced three (four if you include irritability as a side effect of Solu-Medrol... which I had, according to my friend). Whew. And the three I had were all symptoms of MS, such as being tired and having pain. Double whew.

Well, then I wondered what I should be doing as far as grieving, if I'm going about it correctly. How to move through the stages. What to expect. Whether what I'm feeling is normal.

I found this website: http://helpguide.org/mental/grief_loss.htm

It was helpful. I found that my instincts were correct regarding not wanting to medicate away the grief process:


As a general rule, normal grief does not warrant the use of antidepressants. While medication may relieve some of the symptoms of grief, it cannot treat the cause, which is the loss itself. Furthermore, by numbing the pain that must be worked through eventually, antidepressants delay the mourning process.


Ha! Take that, Dr. Gabby. Pfft.

I could not believe how perfectly the list "Common Symptoms of Grief" captured what I have felt. Even anxiety, as a component of fear. True. My anxiety occurs when I think about my future with MS. Or my finances with MS! Definitely fear-related. I remember one night I could not sleep and I made a list of my feelings. I was surprised how many began with "I'm scared because..." Yes, I am scared.

But I found that I am doing everything listed under both of the "Coping with grief and loss" tips. That was a relief. At least I am doing what I can and should to move through this process.

And I did not have the symptoms that suggest depression and not just grief. Idiot Dr. Gabby was wrong about that, as well.

That website also has an article on supporting a grieving person. http://helpguide.org/mental/helping_grieving.htm

I just emailed friends and family about it. A little anxious... But I need them to know how to handle me.

Second Shrink Visit

I saw the shrink again today. I hope she's going to help me at some point. So far she just asks how things are going ("Did you have any doctor visits this week?"), listens, and says things like, "That must be so hard." Oh, and watches me cry. I feel like any friend could do that.

She does take notes. I wonder what she will do with that information. Hopefully help me. She did say one thing that made me think. "You've always been so compliant."

True. I'm not out to make waves. My first instinct is to do as I'm told. Be a good child. A good student clinician. A good friend/girlfriend. A good patient--accept what the doctor says.

I want to change that! At least in the context of doctors. I want to ask more questions, disagree verbally when I disagree inwardly, and generally take more ownership of my treatment. I think I have improved. I argued with Dr. Gabby until she gave in and wrote me a referral. I bugged her until she got my paperwork in to Acthar. I told her to STOP interrupting; I was not finished speaking. But it's easier to be assertive with a combative person.

Wait, that doesn't make any sense. I wonder why I can be more assertive with a combative person. And I think I can be more assertive with a person that I have little respect for. It's harder to be assertive with a rational, respectable person--in fact, I really have not disagreed with someone like that. That's why I let Dr. Ronnie walk all over me. Hm. I do need to improve.

I need to stop and think: Is this really what I want? Ask that question before I agree.

Maybe the shrink is helping. I don't know. I cried through the entire session and did not feel better afterward. Maybe that's normal and I shouldn't have the expectation of feeling better at the end of a session. I don't really know what to expect from a psychologist.