Let's start with a positive: Physical therapy is going well. Today I saw Kate, and after I wore myself out with exercises (honestly not many; I am easily worn out), she worked on my upper back and shoulder. It hurt!! I can take a lot of pain, though. It was not as bad as my MS pain. Or surgery without anesthesia. ;) After working on my rhomboids, levator, and teres for a while, she had my sit up. She asked if I still had pain, and I said yes. The amazing part... She did something about it! My previous PT experience was different. But Kate continued to work on my rhomboids and made the pain nearly go away.
Boo: I have had a migraine for five hours.
Yay: I am recovering from the steroids. Do not get me wrong; I feel awful. On a scale of 0 (great) to 10 (awful), today was a 9, down from 10s last week. But I did not feel an awfulness of 9 when I woke up, so that is an improvement.
Boo: My nerve pain is bad today. I think it is the weather. I have noticed that it tends to be worse when a storm is coming. I am like an old farmer: "My knee says it will rain!"
Yay: My butt incision is finally healing. I know: it has been six weeks! It keeps tearing and gaping. My friend put butterflies on it a few days ago, so it cannot open back up. Hopefully it is not growing MRSA inside of it. I cannot really keep it clean without getting the butterflies wet. I do not want to take them off, because I want to give the tissue a chance to knit together and STAY.
Boo: I am depressed. I am just sick of being sick. Cliched but true. I am becoming reconciled to the idea that I will not be healed. It does not matter how much faith I have.
On Friday, I met with my shrink, Ruth, and I had one big question I wanted answered: How do I not have a stress response when I am too sick to do basic life tasks? I realized that I am becoming stressed and anxious when I am sick in the morning or when I go to bed without having recovered from the day. I am learning how my MS operates and improving at predicting how things will go. For example, if my fatigue is at a 9 at 10:00 am, I am going to be incoherent by noon if I continue to do taxing things like, oh, sitting up.
So I talked with Ruth about that, and she did not have answers. She said to hold onto hope, and I said that I do not have any. I also said that I did not think that my thoughts were distorted; I thought my predictions were reasonable based on experience. And she agreed. She agreed that there is no reason for me to hold onto hope, but that somehow I should anyway. I should find a way. And that she was holding onto hope for me. Then she offered to have her husband give me a blessing.
As he began the blessing, I was thinking of a word, a half question that I could not really formulate into a complete thought due to my fatigue. Right after I thought the word, he said it.
This was not a blessing of healing, but it was a blessing of knowledge. I knew that I will not be healed, and that knowledge was a little bit comforting, because at least I can know what to expect. It is kind of like when a child acts out repeatedly and then the parent begins to discipline the child. Every time he hits, he sits in time out. And somehow the child feels less anxious. I am not saying that I am being punished. I am saying that boundaries and set expectations are comforting, in a way.
But I am still not happy to be sick! When I am this sick, I want so badly to die. I just want it all to be over. I find joy in small things, I love my kids, I have fun sometimes, blah blah blah, but my body is being tortured from the inside out. And it is getting worse, not better. So many times these past two weeks I have thought of my bottle of Percocet. I like having it around, just in case. Of course, I have so many meds--I could easily concoct a home remedy if I wanted. The only thing that keeps me from doing that is my best friend, who would never get over it. So I am living for her.
Monday, April 15, 2013
Saturday, April 6, 2013
Miserable
The steroids are hitting me pretty hard. I feel just awful, like I am not really living but waiting to die.
Today the joint pains kicked in, along with a headache. My trigeminal neuralgia became worse yesterday--my upper left row of teeth have hurt so badly that I can hardly eat. Today I took Percocet for it, which helped. The nerve pain in my left is worse. It is a weird pain, hard to describe. Bad. But at least the Hug is gone, and I took the last dose of steroids today. Now I just have to heal from the medication.
PT is going okay. Kate and Dave are nice. It hurts when they work on my upper back, but I suppose it is helping. I hate doing the exercises. It is hard to stand even briefly, and I have to stand up for four of the exercises. Boo. I do not mind the heat therapy, though. I close my eyes and trip out with my vertigo. It is not so scary now that I am used to it.
I am stir crazy but too tired to do anything. This morning I went to the grocery store to get breakfast, and I could not walk when I got home. I would like to read, but my brain is too tired.
I cannot remember when I last blogged, but I had anxiety from the steroids for a while. I had gotten the Klonopin for that. Well, either that was too much Klonopin or it just did not agree with me, because it brought me down too much. Crying off and on. Dark. But that could have been the steroids directly. Or just feeling to awful. It did not seem completely proportional to how I felt physically, but it is hard to remember now. It was yesterday and the day before. Today I am having trouble keeping a thought in my head for more than a second, so yesterday might as well have been a million years ago.
Oh, get this... Steroid insomnia, right? The last few nights, I have taken 3 mg Lunesta and 0.5 mg Klonopin around 10:15, fall asleep around 11:00, wake up at 3:30, take 12.5 mg Ambien CR, back to sleep by 4:00, and wake up again at 6:00, 7:00, 7:20, 7:30... I would take another Lunesta at 3:30, if I had enough. I have extra Ambien CR, because I had just refilled the prescription when Dr. Rob switched me to Lunesta. I think I need more sleep, but I do not see how I can get it. I do have a few Sonata left from a previous steroid run. I only get about two hours of sleep from it on a good day, but it does help me fall asleep quickly, with that freaky "down the rabbit hole" feeling that I used to hate but now welcome, because it at least means sleep. (How is that for a run-on sentence?)
I hate MS.
Today the joint pains kicked in, along with a headache. My trigeminal neuralgia became worse yesterday--my upper left row of teeth have hurt so badly that I can hardly eat. Today I took Percocet for it, which helped. The nerve pain in my left is worse. It is a weird pain, hard to describe. Bad. But at least the Hug is gone, and I took the last dose of steroids today. Now I just have to heal from the medication.
PT is going okay. Kate and Dave are nice. It hurts when they work on my upper back, but I suppose it is helping. I hate doing the exercises. It is hard to stand even briefly, and I have to stand up for four of the exercises. Boo. I do not mind the heat therapy, though. I close my eyes and trip out with my vertigo. It is not so scary now that I am used to it.
I am stir crazy but too tired to do anything. This morning I went to the grocery store to get breakfast, and I could not walk when I got home. I would like to read, but my brain is too tired.
I cannot remember when I last blogged, but I had anxiety from the steroids for a while. I had gotten the Klonopin for that. Well, either that was too much Klonopin or it just did not agree with me, because it brought me down too much. Crying off and on. Dark. But that could have been the steroids directly. Or just feeling to awful. It did not seem completely proportional to how I felt physically, but it is hard to remember now. It was yesterday and the day before. Today I am having trouble keeping a thought in my head for more than a second, so yesterday might as well have been a million years ago.
Oh, get this... Steroid insomnia, right? The last few nights, I have taken 3 mg Lunesta and 0.5 mg Klonopin around 10:15, fall asleep around 11:00, wake up at 3:30, take 12.5 mg Ambien CR, back to sleep by 4:00, and wake up again at 6:00, 7:00, 7:20, 7:30... I would take another Lunesta at 3:30, if I had enough. I have extra Ambien CR, because I had just refilled the prescription when Dr. Rob switched me to Lunesta. I think I need more sleep, but I do not see how I can get it. I do have a few Sonata left from a previous steroid run. I only get about two hours of sleep from it on a good day, but it does help me fall asleep quickly, with that freaky "down the rabbit hole" feeling that I used to hate but now welcome, because it at least means sleep. (How is that for a run-on sentence?)
I hate MS.
Thursday, April 4, 2013
Klonopin
Dr. Rob's choice of anti-anxiety med was Klonopin 0.5 mg. Hmm... Well, I do not have anxiety. But I do have tearful "downness." And I think it is making me more tired, if that is possible. At PT today, Dave kept asking if I was okay. Maybe I am a little out of it. My thinking was already slow before that.
Hopefully it helps me sleep. I do not care about addiction anymore. I am in survival mode. Actually, I am in not-really-caring anymore mode. I do not want this life.
Hopefully it helps me sleep. I do not care about addiction anymore. I am in survival mode. Actually, I am in not-really-caring anymore mode. I do not want this life.
It's Official--Yes, Again
Monday night Dr. Rick declared me in another flare, with the probable lesion in the thoracic spine. I began steroids on Tuesday--five days of 100 mg prednisone. Dr. Rick did not want to go higher due to my history of bad reactions.
Yesterday afternoon, the precipitating symptom was much better, so I guess the steroids are working. The symptom was the MS hug, which sounds much better than it is. Here is one woman's experience with it. My experience was a band of cramping, spasming, tight pain around my back and my right side, at about bra band level. Under the shoulder blades. Oh, the pain.
It began on Friday. I took Flexeril and used a heating pad, which did not help. On Monday, I saw my internist, Dr. Rob, who did not see how it could be related to MS. He wrote me a prescription for Soma, which did not help at all, and sent me to physical therapy. I decided to go to a different place, because I did not really care for my last PT company. I visited my new PT, Kate, on Tuesday. She mostly hid her horror at the lack of motion range in my back and shoulder flexors. I will see her 2-3 times a week now. Or her partner, Dave. I am looking forward to seeing if there is a change when I go today, since the prednisone has started helping.
One good thing that came out of my visit to Dr. Rob was that he changed my sleeping medicine. I am waking up 5-10 times per night on Ambien CR 12.5 mg, and he changed me to Lunesta 3 mg. I got four hours straight the first night on it and only woke up 3 times total, so that was great. But them the steroid insomnia fought against it. Last night I took Lunesta and Benadryl at 10:15 pm, slept 11:00-3:30, took Ambien CR at 4:30, and got up at 8:00. I was still so tired. I cleared my schedule for today, except for PT.
The other ill affect the steroids are having, which began yesterday afternoon, is anxiety. Bordering on panic sometimes. Not for any reason, just there. I called Dr. Rob to ask for a prescription of something, anything. I have not heard back, but he may have just sent something in. I guess I will stop by the pharmacy when I go out for PT.
Not that I want to go anywhere. I just want to snuggle into a blanket and sleep for a few weeks. I hate flares.
Yesterday afternoon, the precipitating symptom was much better, so I guess the steroids are working. The symptom was the MS hug, which sounds much better than it is. Here is one woman's experience with it. My experience was a band of cramping, spasming, tight pain around my back and my right side, at about bra band level. Under the shoulder blades. Oh, the pain.
It began on Friday. I took Flexeril and used a heating pad, which did not help. On Monday, I saw my internist, Dr. Rob, who did not see how it could be related to MS. He wrote me a prescription for Soma, which did not help at all, and sent me to physical therapy. I decided to go to a different place, because I did not really care for my last PT company. I visited my new PT, Kate, on Tuesday. She mostly hid her horror at the lack of motion range in my back and shoulder flexors. I will see her 2-3 times a week now. Or her partner, Dave. I am looking forward to seeing if there is a change when I go today, since the prednisone has started helping.
One good thing that came out of my visit to Dr. Rob was that he changed my sleeping medicine. I am waking up 5-10 times per night on Ambien CR 12.5 mg, and he changed me to Lunesta 3 mg. I got four hours straight the first night on it and only woke up 3 times total, so that was great. But them the steroid insomnia fought against it. Last night I took Lunesta and Benadryl at 10:15 pm, slept 11:00-3:30, took Ambien CR at 4:30, and got up at 8:00. I was still so tired. I cleared my schedule for today, except for PT.
The other ill affect the steroids are having, which began yesterday afternoon, is anxiety. Bordering on panic sometimes. Not for any reason, just there. I called Dr. Rob to ask for a prescription of something, anything. I have not heard back, but he may have just sent something in. I guess I will stop by the pharmacy when I go out for PT.
Not that I want to go anywhere. I just want to snuggle into a blanket and sleep for a few weeks. I hate flares.
Monday, March 25, 2013
Recovery
Well, well, well. It has been three weeks since surgery. The recovery road has been paved with thorns, as it were.
I was zonked on Percocet the first four days or so. Pain management. I was surprised how much pain I had. Have. It is tons better, but I still have quite a bit of pain, particularly in the "pocket."
I went back to work after a week, but I probably should have taken longer. I ended up leaving early a few times. One day I only worked two hours, because I could not handle more. Naps have been a necessity; some days I literally could not stay awake. (And I know how to use the word "literally.")
There was one odd happening that I wanted to bring up. I discussed this with both of my shrinks, ha. It was the day I got my staples out.
Exactly two weeks after the surgery, I visited Dr. Willy to have my staples removed. After an hour of waiting, he breezed in (yes, I was annoyed) and pronounced my back pristine. Best wound care ever. What can I say, I am highly compliant--you said to keep it clean...
The dressing was grafting to my skin, with a layer coming off with it. Ow. Orange gunk all over my back. Apparently the grafting never happens (maybe not literally never, but Dr. Willy had never seen it in all his years). I do have issues with adhesives.
When the dressing was finally off and the gauze over the incisions removed, Dr. Willy pronounced my incisions beautiful. Best wound care ever.
My friend took a picture of the stapled incisions and showed me. Surprising. Disgusting. Foreign. And then it occurred to me... How painful would this be?
The staples looked like they were really in there. They were crusted over. It occurred to me that I should have premedicated with Percocet. Dagnabbit. I nervously asked, "Is this going to hurt?" Dr. Willy paused, then responded, "You will feel some discomfort."
Everyone knows that "discomfort" is doctor code for pain.
I pushed my waistband down, exposing my hips. I hunched over, exposing my spine. It was not that bad when it began. Toward the bottom of the midline incision, some of the staples pulled and hurt. Then he started on the pocket incision.
The pocket incision staples were worse than the spine incision staples. Also, there were more of them, despite it being a shorter incision. Dr. Willy pinched my skin a few times. The staples pulled. I have definitely experience worse pain, but the unexpected aspect was challenging. I could not see what he was doing.
And then I had a strange feeling. I felt like I would pass out. I have wondered before how people could say that, how they could know that they would pass out. Now I understand.
I asked my friend how many more. She said, "Several." I told Dr. Willy, "I feel lightheaded. I think I might pass out." I guess I was too quiet; I had to repeat myself. He said there were not many more, that he would hurry, and then I could lie down.
I held onto my consciousness with both hands. The last two staples got stuck. Hurry up! And then I laid down on the gurney. I burst into tears. Dr. Willy gave me tissues and spoke in calm tones. I do not even know what he said. The fellow brought me juice. My friend stroked my hair.
Within 10 minutes, I was good as new. Well, sort of. I was dizzy. But I was not anxious anymore. Another fellow took me back to the procedure room to get some x-rays using the fluoroscope. He found that my left wire migrated a wee bit (it was halfway up my 10th thoracic vertebral body, a slight change from 1/3 of the way up), and the right wire also migrated (it was at the top of my 9th thoracic vertebral body, after starting halfway up). The right wire migration changed the stimulation pattern, so I needed to have my device reprogrammed.
After waiting around some more, the Medtronic rep showed up and reprogrammed me. I left with one program the same and two new.
I have needed SO MUCH REST to recover from this surgery, but it was worth it. My pain is down to 3-5, from 7-9. What a great change!
Sunday, March 10, 2013
Autopsychotherapy and MS Cognitive Aids
I made that word up! Wait... I coined that word. Sounds much more impressive. After writing my last blog post, I went straight to my word processor and wrote my little heart out. And my head. Who needs a psychologist? ;)
This is what I wrote:
Maybe I am feeling sorry for myself. Maybe my tears are coming easily today, since I am so exhausted. That is normal for me.
I think I am anxious about the week ahead. I am so exhausted already. I was not able to rest, since B was here yesterday. But I love to see B. Can I not have anything I enjoy anymore?
OK, time to look for distorted thoughts.
About my fears of not making it through the week ahead. It certainly will be a busy week. But again I am fortune-telling. It is true that I might not be able to do everything. Or I might be exhausted. So I might need to miss some work. I would like to see all three kids on Monday. I must see J on Tuesday, and I must go to R's meeting. But I can miss R and maybe P. Rest up for R's meeting. On Wednesday I can go in late, start with C's meeting at 11:00. Thursday I should work all day. I know “should,” but it kind of is a should. I missed the last two Thursday mornings, and I would love to pull the boys for their 9:30 session. On Friday I can just go to Head Start for 45-60 min then rest before the pain clinic. That schedule should be manageable.
I need to make appointments with the MS Clinic and the dentist. The dentist is definitely a need. I don’t want that broken tooth getting infected or breaking more. I would like to call tomorrow.
These were strategies that people with MS suggested on a message board:
This is what I wrote:
Thoughts March 10, 2013
I don’t know why I am so upset or why I am crying.
I think I am tired. I am worried I will not be able to
sleep. I am worried that my sleep problem will never improve. I cannot be
functional without sleep. Even with Ambien CR, I am not sleeping well. I am
worried that my sleep therapy is not working. It’s not changing anything.
I wonder if I can increase my Ambien CR dosage. I wonder if
there is another medicine I can add. I wonder if I should try increasing my
Celexa dosage.
I wonder if I am traumatized by my surgery. After all, I was
awake and felt them cutting. The wire hitting my dorsal nerves was incredibly
painful. Then I had the fear of them giving up.
But they didn’t give up. They tried a little more and got
it.
Maybe I am feeling sorry for myself. Maybe my tears are coming easily today, since I am so exhausted. That is normal for me.
I think I am anxious about the week ahead. I am so exhausted already. I was not able to rest, since B was here yesterday. But I love to see B. Can I not have anything I enjoy anymore?
OK, time to look for distorted thoughts.
Worried that I will not be able to sleep. This is fortune
telling. Worrying about it might make it worse, because I might be anxious at
bedtime. I don’t know what will happen in the future. It’s true that I might
not be able to sleep. I can talk with Dr. Rob about it. I can talk with Dr.
Eric about it. But I might sleep better again tonight. I hope that taking
Flexeril tonight will help.
I would like to speak with Dr. Eric about my behaviors
of speaking dream dialogue and acting out dreams. Also the weird breathing—is
it snoring? Also fragmentary myoclonus—my finger twitches. I learned that sleep
groaning is not from an emotional or psychological disorder. I learned that
SSRIs (like Celexa) can exacerbate periodic limb movements, like sleep
myoclonus. Maybe speak to doctor about discontinuing Celexa for a while. I keep
seeing that clonazepam is used to treat fragmentary myoclonus. Can I try this?
The fact that Flexeril helped me sleep makes me wonder.
Wow, researching Flexeril made me hopeful. It has helped a
lot of people sleep. It has been shown effective for fibromyalgia, and I can’t
help but compare that with MS—both being neurological.
About my possible traumatization from the surgery. I could
bring it up with Ruth or Dr. Eric. Probably Ruth, since she knows me better.
But isn’t all well that ends well? I don’t know how much it really bothers me.
About my fears of not making it through the week ahead. It certainly will be a busy week. But again I am fortune-telling. It is true that I might not be able to do everything. Or I might be exhausted. So I might need to miss some work. I would like to see all three kids on Monday. I must see J on Tuesday, and I must go to R's meeting. But I can miss R and maybe P. Rest up for R's meeting. On Wednesday I can go in late, start with C's meeting at 11:00. Thursday I should work all day. I know “should,” but it kind of is a should. I missed the last two Thursday mornings, and I would love to pull the boys for their 9:30 session. On Friday I can just go to Head Start for 45-60 min then rest before the pain clinic. That schedule should be manageable.
L will definitely drive me to the hospital on Friday.
She can’t drive me to work on Thursday. Maybe A C and D can. Or just A
C. I wish I could get a ride to St. Augustine on Tuesday.
I need to make appointments with the MS Clinic and the dentist. The dentist is definitely a need. I don’t want that broken tooth getting infected or breaking more. I would like to call tomorrow.
I am worried about working with A. His mom is so crazy.
(Labelling!) But she does love me. Hopefully that love continues. I am really
good at getting kids intelligible. She is excited to get back to Cycles
therapy, since A has stagnated in the last month or so. I will probably need
to coordinate targets with K, which may be difficult, since she dislikes
me and is disinterested in trying Cycles. I can let A's mom fight that
battle. I hope I can keep A interested and working with me for a full 45
minutes. If not, we can cut it to 30 minutes. I can work on Metaphonological
skills, if A will cooperate.
Back to the dentist. Friday midday would work. Or next
Monday afternoon. Or Tuesday afternoon, missing the Pals meeting.
I feel so much better. Points of action (as much as I can
handle of this):
- Dentist appointment for 3/15 midday, 3/18 pm, 3/19 pm, or after work
- Plan A's session (mom wants to begin with /s/ blends)
- Put out the word that I am looking for rides on Tuesday and Thursday.
- Speak with Ruth about surgery
- Speak with Dr. Rob about Flexeril (possibly start), Klonopin (possibly start), Celexa (possibly stop), bowel issues
- Make an appointment with Dr. Rob (see above availability)
- Speak with Dr. Eric about speaking dream dialogue, acting out dreams, fragmentary myoclonus, groaning, possible snoring, relaxation homework, results of the intake paperwork I filled out (rating scales), chicken and egg with depression and sleep—seems insomnia comes first bc I am only depressed when I am exhausted and sleep deprived
- Look up MS memory strategies. Oops, forgot.
Here is what I found on MS memory strategies
- Memory exercises on a computer? (no evidence or testimonials that it works)
- Home or work strategies with notebooks, organizers, or filing systems to help you remember things
These were strategies that people with MS suggested on a message board:
- Notebooks for doctors
- Print out weekly calendar pages, take notes on them, keep in “go bag”
- Make a place for bills to live before being paid.
- Say it out loud, then write it down.
- MS memory problems or cognitive problems are often attention/concentration problems.
- When trying to remember a list of things that you need at the store, you can visualize the items. Picture a room in your house, like your foyer. Imagine a place where you would set items, like the foyer table. Visualize the item you need on the table. Visualize another item you need on that table, underneath, or in a weird location in that same room (maybe hanging somewhere in the room, tipped on it's side, etc.. Do this for all your items.
- A variation of this is called method of loci. Imagine the item in a familiar place or route. "Pick up" the items when you visualize yourself either walking through your house or driving your car. You can memorize your shopping list, etc. this way.
- There's many other tips, using other senses, like auditory. Songs, rhymes, hearing you say the words, lists, nams, etc. Then there's organizational techniques, like mnemonic devices-- For example: My Very Earnest Mother Just Served Us Nine Pickles. This acrostic is the planets in order from the sun out: Mercury, Venus, Earth, etc.
- Another one that I like a lot is to make an association to remember names of people. My husband gave me this tip. He's the world's best at remembering names of people. I had a friend name Stuart and I couldn't remember his name to save my life. When I saw him in the grocery store last, I was sweating bullets to get his name out to introduce him to my husband. He took the pressure off of me and introduced himself. After we left the grocery store, my husband told me that this was an easy association. Stuart "Little" because Stuart is not little he was big. I still remember his name to this day, and have no problems with that. Associations are big in education these days. Association and making connections is key to remembering what you read. Connect when you see something that you should remember. That reminds me of . . .
- I've found that when the brain is working its working, when it goes on holiday and forgets to let me know, it doesn't matter what i know, um all the tricks are packed away in the bottom of the suitcase, probably still going around and around the luggage carousel waiting for my brain to claim it lol.
- I would recommend checking out the ADD, Dyslexic or even CAPD (central auditory processing disorder) community or information sites, lots of usefull information to be found.
- The other problem is a total lack of recall of fairly important conversations. One would think that given the importance of the subject and length to which it was discussed, someone could trigger my memory, but NO. – So true!!
Trauma?
I wonder if I should make an appointment with Dr. Eric to talk about the SCS surgery. Obviously it sucked, but I did not think it was psychologically damaging until today. Someone asked me how I was feeling, and I started to cry when I thought about the surgery. I considered the possible psychological trauma of the event as I wrote my blog post about it, but I did not feel traumatized at the time. I was surprised, because I thought it was odd that I could be cut open while awake and not be traumatized. Maybe it took some time to hit me.
Or maybe I am just tired. I did not sleep well the last two nights. And yesterday I wore myself out helping an underprivileged kid with a school project. And a Wii project. :) I cannot believe I did not sleep after that!
Tonight I am going to take half of a muscle relaxer, along with my Ambien.
I do not know if I am really traumatized by the surgery or just worn down by the pain and fatigue. I feel like I need to cry. Gosh, I am exhausted.
Or maybe I am just tired. I did not sleep well the last two nights. And yesterday I wore myself out helping an underprivileged kid with a school project. And a Wii project. :) I cannot believe I did not sleep after that!
Tonight I am going to take half of a muscle relaxer, along with my Ambien.
I do not know if I am really traumatized by the surgery or just worn down by the pain and fatigue. I feel like I need to cry. Gosh, I am exhausted.
Thursday, March 7, 2013
SCS Surgery Recovery
It has been six days since my surgery. The recover has been rough! Worse than I expected. I can handle pain well, but I have been taking a lot of Percocet. Between that and the Benadryl for my allergy to the dressing, I have taken naps every day. The first two days after surgery, I slept more than I was awake. I did not mind, because I know that sleep helps the body heal.
The pain from the surgery is bad at the spinal incision, but it is worth at the flank incision. My poor hip/butt. It hurts to walk. Sometimes I cannot even bear weight on that leg; the pain is too severe.
However... The device is working. It helps so much with my burning pain! My spasticity has also been better, but I wonder if that is because of the SCS or because of all the rest I am getting.
I am looking forward to the surgery sites healing! And I cannot wait to have the dressing removed, to stop the itching. Eight more days.
Oh, and in non-MS news, I broke the filling of a tooth. On the other side of my mouth from where I had my implant placed. So now it is very hard to eat! Need to find a dentist, because I do not like mine. He let that one tooth rot enough that I needed an implant. And I told him the crown did not fit well. He has lost me trust. Agh, making a dentist appointment is just one more thing to do for my part-time job of managing my health.
The pain from the surgery is bad at the spinal incision, but it is worth at the flank incision. My poor hip/butt. It hurts to walk. Sometimes I cannot even bear weight on that leg; the pain is too severe.
However... The device is working. It helps so much with my burning pain! My spasticity has also been better, but I wonder if that is because of the SCS or because of all the rest I am getting.
I am looking forward to the surgery sites healing! And I cannot wait to have the dressing removed, to stop the itching. Eight more days.
Oh, and in non-MS news, I broke the filling of a tooth. On the other side of my mouth from where I had my implant placed. So now it is very hard to eat! Need to find a dentist, because I do not like mine. He let that one tooth rot enough that I needed an implant. And I told him the crown did not fit well. He has lost me trust. Agh, making a dentist appointment is just one more thing to do for my part-time job of managing my health.
Monday, March 4, 2013
Spinal Cord Stimulator - The Real Deal
Last Friday I had a permanent spinal cord stimulator (SCS) implanted. That was much sooner than I expected. I only got the trial lead out last Monday. But when a cancellation occurred and a slot opened up, I took it.
However, the time slot was not for Dr. Chris; it was for Dr. Willy. That made me a little nervous, but I had met him and like him. Picture a polite, African gentleman with good posture and elegant hands. Now I want to switch from Dr. Chris to Dr. Willy permanently.
The surgery was insane. Absolutely insane.
First they gave me a bunch of local anesthesia in my back. Then they tried to give me twilight sedation, but I did not react well. I started sobbing! That did not work well, because I needed to hold still, and the sobs were shaking my body. Dr. Hayden, the sweet anesthesiology fellow doing my anesthesia for the procedure, leaned in to ask what was wrong. Was I scared? Nervous? I just said, "I don't know, I don't know." I was a little nervous, but that was not why I was sobbing. Dr. Hayden gave me something to cancel out whatever he had given me, and I stopped crying. That was good, but they still had to cut me open.
I heard Dr. Willy talking to Dr. Amos, the pain fellow doing the procedure (he also did my trial procedure). He was saying where the incision should start. Incision? Now? Oh, boy.
At first I did not feel it, and then they hit a spot that was not numb. AGHHH!! I cried out in pain. They gave me more local. Dr. Willy commented to someone (Dr. Hayden?), "It is going to be hard to dissect down with her awake." That was when I realized that they were making the 4-inch incision they had described to me, in the middle of my back, all the way down to my spine. They continued to give me local anesthetic when I cried out, but I felt a good bit of the "dissection."
It was so painful. Dr. Hayden gently uncurled my unconsciously balled-up fist and gave me his thumb to squeeze. He said I was doing great.
Once the leads were in, it was similar to the trial procedure. Moving them around to find the right spot. Me giving detailed descriptions of where I felt the stimulation. Vaughn from the implant company would adjust settings ("I'm putting 1 as cathode and 6 anode..."), and I would give more feedback. When they moved the leads and hit nerves, I was sometimes stabbed with intense pain. Dr. Amos tried to avoid that.
About an hour in, I realized that I needed to pee. Badly. I had gone right before I went into surgery, but whatever, nature was calling. Finally I spoke up, and Dr. Willy quickly and kindly said, "Just go. Go right where you are. We will take care of it." I thought that I would hold it as long as I could, and I would let it out if I had to.
It took a long time to place the leads. Apparently my body is weird. Most people have the nerves that go to the front of their body running down the back of their spine (opposite of what you would think). Mine are the other way around. So they had trouble getting coverage of the fronts of my thighs, which is where I need it most. Dr. Willy almost called it quits. Finally we got it! When I said, "Good job, Vaughn, you got my right anterior thigh!" Dr. Willy said, "There is a God!" I said, "I don't know about you, but I was praying." He said, "Oh yes, I was, too--I thought you could hear me."
Through the 3+ hours of surgery that I was awake (not exaggerating), Dr. Amos was so calm and patient. Dr. Willy was also great. And Vaughn, who was a great listener. But Dr. Hayden was the best. He was so supportive. He was up near my head, and I was draped, so he was the only person I could see. After hours of trying to place the wires, after being jolted with pain so many times, I was physically and emotionally stressed. Dr. Hayden leaned in and whispered, "You are incredible!" His kindness was touching, and I felt comforted.
When we had settled on good spots for the wires (I had two leads placed), it was time to suture them in place, tunnel the wires under my skin to my butt/hip, place a neurostimulator (like a pacemaker) in my butt/hip, and connect the wires to the neurostimulator. When I heard one of the doctors ask for the suture materials, I was thinking Hello, isn't it time for me to take a nap now? I knew that the plan was to put me to sleep for that part. Luckily Dr. Hayden spoke up before I had to. He asked, "Can I put her out now?" Dr. Willy said, "Oh yes, please put her out."
Dr. Hayden patted my hand, and it was time to go to sleep. I welcomed it!
I woke up in the OR, after everything was finished. There was no room in the PACU inn, so I had to hang out in the OR for a while.
Right away, I had to pee. The surgery had been nearly five hours, and I ended up being able to hold it. I had expected to wake up wet, having gone while I was unconscious. Surprise, nope! It took a few minutes, several pleas from me, and a request from my BFF Dr. Hayden, and then a nurse brought me a bedpan.
But I could not go! Darn anesthesia. It took a good five minutes to go, but then I filled up the bedpan. Ahhhhh.... After that, I did not mind waiting.
Pain control was an issue in the PACU, as was itching control. It looks like I am allergic to one of the dressings. I have issues with adhesives, so it is probably that. Unfortunately, none of the dressings can be removed for two weeks. They kept loading me up with IV Benadryl, which helped some. I have been taking Benadryl fairly regularly since then.
I hated the side effects of the IV fentanyl they gave me in the PACU, but it did help with the pain. Not for long--they kept having to give me more. I had been warned that the pain from the "pocket" in my butt would be excruciating, and they were not exaggerating. But the fentanyl caused extreme dizziness. The nurse told me to close my eyes, which helped.
Vaughn came into the PACU to program my remote. That took a good 45 minutes. It was similar to the tests in the OR, with me telling him where I felt the stimulation and how strongly. He gave me the remote with an "antenna" that I place over the neurostimulator (under my skin). I have a remote-controlled butt! He also gave me the charging belt, but I am not supposed to use it these first two weeks, unless I absolutely have to. It could increase inflammation that disrupts healing.
So now it has been three days since the surgery. I have slept a lot! Between Benadryl, Percocet, and the energy it takes to heal, I have been wiped out. Today I have only taken one nap so far, but I may need another one. On Saturday I think I took four long naps. I felt like a newborn baby!
I went to church on Sunday, but I had to wear a hat. No showers allowed, and I could not even sponge-bathe until Sunday night. Now I can sponge-bathe. On Friday I can take a shower, as long as the dressing cover is firmly in place--no getting the incisions wet. This morning, my friend helped me wash my hair, which was awesome. My hair was nasty, having not been washed since Thursday!
Gosh, my butt incision hurts. I have to be so careful how I move. And nothing can touch it, even lightly. I guess I could take another Percocet, but I like being awake. I am staying home from work tomorrow and probably Wednesday. They have been great about saying to take as much time as I need. They do not know what the surgery was, because I want to keep my disease private. I do not like everyone knowing my business, and I do not want to risk discrimination. There are a lot of wrong notions about MS.
Oh, goodness, I am getting really tired. I guess I will wrap this up.
I am happy that I have my SCS. The surgery was rough, to put it mildly, but I think it was worth it. I am looking forward to continued refinements of the programming, to cover my pain better. I think it will improve my quality of life.
However, the time slot was not for Dr. Chris; it was for Dr. Willy. That made me a little nervous, but I had met him and like him. Picture a polite, African gentleman with good posture and elegant hands. Now I want to switch from Dr. Chris to Dr. Willy permanently.
The surgery was insane. Absolutely insane.
First they gave me a bunch of local anesthesia in my back. Then they tried to give me twilight sedation, but I did not react well. I started sobbing! That did not work well, because I needed to hold still, and the sobs were shaking my body. Dr. Hayden, the sweet anesthesiology fellow doing my anesthesia for the procedure, leaned in to ask what was wrong. Was I scared? Nervous? I just said, "I don't know, I don't know." I was a little nervous, but that was not why I was sobbing. Dr. Hayden gave me something to cancel out whatever he had given me, and I stopped crying. That was good, but they still had to cut me open.
I heard Dr. Willy talking to Dr. Amos, the pain fellow doing the procedure (he also did my trial procedure). He was saying where the incision should start. Incision? Now? Oh, boy.
At first I did not feel it, and then they hit a spot that was not numb. AGHHH!! I cried out in pain. They gave me more local. Dr. Willy commented to someone (Dr. Hayden?), "It is going to be hard to dissect down with her awake." That was when I realized that they were making the 4-inch incision they had described to me, in the middle of my back, all the way down to my spine. They continued to give me local anesthetic when I cried out, but I felt a good bit of the "dissection."
It was so painful. Dr. Hayden gently uncurled my unconsciously balled-up fist and gave me his thumb to squeeze. He said I was doing great.
Once the leads were in, it was similar to the trial procedure. Moving them around to find the right spot. Me giving detailed descriptions of where I felt the stimulation. Vaughn from the implant company would adjust settings ("I'm putting 1 as cathode and 6 anode..."), and I would give more feedback. When they moved the leads and hit nerves, I was sometimes stabbed with intense pain. Dr. Amos tried to avoid that.
About an hour in, I realized that I needed to pee. Badly. I had gone right before I went into surgery, but whatever, nature was calling. Finally I spoke up, and Dr. Willy quickly and kindly said, "Just go. Go right where you are. We will take care of it." I thought that I would hold it as long as I could, and I would let it out if I had to.
It took a long time to place the leads. Apparently my body is weird. Most people have the nerves that go to the front of their body running down the back of their spine (opposite of what you would think). Mine are the other way around. So they had trouble getting coverage of the fronts of my thighs, which is where I need it most. Dr. Willy almost called it quits. Finally we got it! When I said, "Good job, Vaughn, you got my right anterior thigh!" Dr. Willy said, "There is a God!" I said, "I don't know about you, but I was praying." He said, "Oh yes, I was, too--I thought you could hear me."
Through the 3+ hours of surgery that I was awake (not exaggerating), Dr. Amos was so calm and patient. Dr. Willy was also great. And Vaughn, who was a great listener. But Dr. Hayden was the best. He was so supportive. He was up near my head, and I was draped, so he was the only person I could see. After hours of trying to place the wires, after being jolted with pain so many times, I was physically and emotionally stressed. Dr. Hayden leaned in and whispered, "You are incredible!" His kindness was touching, and I felt comforted.
When we had settled on good spots for the wires (I had two leads placed), it was time to suture them in place, tunnel the wires under my skin to my butt/hip, place a neurostimulator (like a pacemaker) in my butt/hip, and connect the wires to the neurostimulator. When I heard one of the doctors ask for the suture materials, I was thinking Hello, isn't it time for me to take a nap now? I knew that the plan was to put me to sleep for that part. Luckily Dr. Hayden spoke up before I had to. He asked, "Can I put her out now?" Dr. Willy said, "Oh yes, please put her out."
Dr. Hayden patted my hand, and it was time to go to sleep. I welcomed it!
I woke up in the OR, after everything was finished. There was no room in the PACU inn, so I had to hang out in the OR for a while.
Right away, I had to pee. The surgery had been nearly five hours, and I ended up being able to hold it. I had expected to wake up wet, having gone while I was unconscious. Surprise, nope! It took a few minutes, several pleas from me, and a request from my BFF Dr. Hayden, and then a nurse brought me a bedpan.
But I could not go! Darn anesthesia. It took a good five minutes to go, but then I filled up the bedpan. Ahhhhh.... After that, I did not mind waiting.
Pain control was an issue in the PACU, as was itching control. It looks like I am allergic to one of the dressings. I have issues with adhesives, so it is probably that. Unfortunately, none of the dressings can be removed for two weeks. They kept loading me up with IV Benadryl, which helped some. I have been taking Benadryl fairly regularly since then.
I hated the side effects of the IV fentanyl they gave me in the PACU, but it did help with the pain. Not for long--they kept having to give me more. I had been warned that the pain from the "pocket" in my butt would be excruciating, and they were not exaggerating. But the fentanyl caused extreme dizziness. The nurse told me to close my eyes, which helped.
Vaughn came into the PACU to program my remote. That took a good 45 minutes. It was similar to the tests in the OR, with me telling him where I felt the stimulation and how strongly. He gave me the remote with an "antenna" that I place over the neurostimulator (under my skin). I have a remote-controlled butt! He also gave me the charging belt, but I am not supposed to use it these first two weeks, unless I absolutely have to. It could increase inflammation that disrupts healing.
So now it has been three days since the surgery. I have slept a lot! Between Benadryl, Percocet, and the energy it takes to heal, I have been wiped out. Today I have only taken one nap so far, but I may need another one. On Saturday I think I took four long naps. I felt like a newborn baby!
I went to church on Sunday, but I had to wear a hat. No showers allowed, and I could not even sponge-bathe until Sunday night. Now I can sponge-bathe. On Friday I can take a shower, as long as the dressing cover is firmly in place--no getting the incisions wet. This morning, my friend helped me wash my hair, which was awesome. My hair was nasty, having not been washed since Thursday!
Gosh, my butt incision hurts. I have to be so careful how I move. And nothing can touch it, even lightly. I guess I could take another Percocet, but I like being awake. I am staying home from work tomorrow and probably Wednesday. They have been great about saying to take as much time as I need. They do not know what the surgery was, because I want to keep my disease private. I do not like everyone knowing my business, and I do not want to risk discrimination. There are a lot of wrong notions about MS.
Oh, goodness, I am getting really tired. I guess I will wrap this up.
I am happy that I have my SCS. The surgery was rough, to put it mildly, but I think it was worth it. I am looking forward to continued refinements of the programming, to cover my pain better. I think it will improve my quality of life.
Sunday, February 24, 2013
SCS? SOS...
My SCS trial is not exactly what I expected. Imagine having your entire back covered in Saran Wrap, with just enough blood under the plastic to keep it wet and sticky. I cannot wait to have the trial device removed.
Plus the lead migrated to a different spot after less than 24 hours, so it has not been covering the areas I need.
Despite all this, I am pretty sure that I want a permanent SCS. While the lead was in its original position, it really did help.
But I am not looking forward to having that procedure again... probably worse, since they will suture the lead into place. And it will probably be two leads, to get bilateral coverage. I assume that I would be asleep while they place the generator/battery unit in my flank. I want to ask about that tomorrow.
Plus the lead migrated to a different spot after less than 24 hours, so it has not been covering the areas I need.
Despite all this, I am pretty sure that I want a permanent SCS. While the lead was in its original position, it really did help.
But I am not looking forward to having that procedure again... probably worse, since they will suture the lead into place. And it will probably be two leads, to get bilateral coverage. I assume that I would be asleep while they place the generator/battery unit in my flank. I want to ask about that tomorrow.
Wednesday, February 20, 2013
SCS Trial
Today I had a spinal cord stimulator trial device placed. It provides electrical stimulation to my spine, and the hope is that it will block the pain signals.
This was the most painful procedure I have ever had--unexpectedly so. I knew that it was similar to a lumbar puncture, which I have had before. That was not fun but honestly not terrible. The recovery was worse than the procedure, since I developed a CSF leak with the attending spinal headache and had to have a blood patch.
The SCS implantation was similar to the LP in that they went into my spine with me awake. But I did not realize that advancing the lead would be so painful. Not looking forward to having that again.
And there is a good chance I will have it again. If the trial is successful (reduces my pain and helps me be more functional), I will get a permanent device. Either way, this trial lead will be removed on Monday.
Despite the ugliness of the pain, I totally rocked the procedure today. They gave me a bit of Versed toward the beginning, but it made me dizzy, so they did not give me more. I wanted to be alert anyway, so I was fine with not having more.
The first time the needle with the lead was advanced, it was so painful that tears sprang to my eyes. One of the nurses encouraged me to breathe; I did and it did not really help. All of a sudden I realized that the pain was from the needle bumping around in there (exaggerating a bit), and I knew that the best thing to do was keep still and breathe shallowly. That helped! I also realized that the pain was worst when the needle was moving, that it would subside when the desired target was reached. So I tried to be patient and keep as still as possible.
The nurses and fellow kept saying afterward how amazed they were at how I handled everything. They said, "We have had football players and all kinds of tough guys in here, and they were begging for every drug in the book. You were incredible!" Yes, yes, I am awesome, I know...
I did not want to be heavily sedated, because a. I needed a clear head to give the detailed descriptions they needed (lead placement depended on my feedback), and b. I knew that I would feel better if I were aware of the technical things they were saying. I know myself well enough to recognize that intellectualizing helps me not be anxious. And it worked. When they were counting up from my sacrum, I knew that the idea was to try the lead at at least T8, so I was paying attention to the counting. And I was listening to the head honcho asking the Medtronics rep for a standard lead rather than a compact lead. I liked hearing those things.
Although the procedure was awful, it was made less traumatic by my confidence in the team. Everyone was great. I knew that my doc was at the top of his game, and the nurses were so sweet. Of course the Medtronics rep was motivated to make sure that the lead was well placed, because if the trial is a success, Medtronics gets a sale. The one thing I was not crazy about was that a fellow was doing the procedure, but he seemed really competent. The head honcho guided him a few times. It was fine.
Gosh, I am tired. I did not sleep well last night. So much has been going on! I have a Cliffs Notes I made for my internist, so I will paste that here. One thing to mention is that since I wrote the Cliffs Notes last month, I have begun seeing a new sleep specialist. I still have the other one for the medical side of things. The new guy, whom I will call Dr. Eric, is a psychologist specializing in behavioral sleep medicine. I have seen him twice, and I like him.
I am still on Aubagio 14 mg daily. No issues except a bunch of eczema, which is not normal for me. I have a steroid cream for it. Small price to pay if it helps my MS.
This was the most painful procedure I have ever had--unexpectedly so. I knew that it was similar to a lumbar puncture, which I have had before. That was not fun but honestly not terrible. The recovery was worse than the procedure, since I developed a CSF leak with the attending spinal headache and had to have a blood patch.
The SCS implantation was similar to the LP in that they went into my spine with me awake. But I did not realize that advancing the lead would be so painful. Not looking forward to having that again.
And there is a good chance I will have it again. If the trial is successful (reduces my pain and helps me be more functional), I will get a permanent device. Either way, this trial lead will be removed on Monday.
Despite the ugliness of the pain, I totally rocked the procedure today. They gave me a bit of Versed toward the beginning, but it made me dizzy, so they did not give me more. I wanted to be alert anyway, so I was fine with not having more.
The first time the needle with the lead was advanced, it was so painful that tears sprang to my eyes. One of the nurses encouraged me to breathe; I did and it did not really help. All of a sudden I realized that the pain was from the needle bumping around in there (exaggerating a bit), and I knew that the best thing to do was keep still and breathe shallowly. That helped! I also realized that the pain was worst when the needle was moving, that it would subside when the desired target was reached. So I tried to be patient and keep as still as possible.
The nurses and fellow kept saying afterward how amazed they were at how I handled everything. They said, "We have had football players and all kinds of tough guys in here, and they were begging for every drug in the book. You were incredible!" Yes, yes, I am awesome, I know...
I did not want to be heavily sedated, because a. I needed a clear head to give the detailed descriptions they needed (lead placement depended on my feedback), and b. I knew that I would feel better if I were aware of the technical things they were saying. I know myself well enough to recognize that intellectualizing helps me not be anxious. And it worked. When they were counting up from my sacrum, I knew that the idea was to try the lead at at least T8, so I was paying attention to the counting. And I was listening to the head honcho asking the Medtronics rep for a standard lead rather than a compact lead. I liked hearing those things.
Although the procedure was awful, it was made less traumatic by my confidence in the team. Everyone was great. I knew that my doc was at the top of his game, and the nurses were so sweet. Of course the Medtronics rep was motivated to make sure that the lead was well placed, because if the trial is a success, Medtronics gets a sale. The one thing I was not crazy about was that a fellow was doing the procedure, but he seemed really competent. The head honcho guided him a few times. It was fine.
Gosh, I am tired. I did not sleep well last night. So much has been going on! I have a Cliffs Notes I made for my internist, so I will paste that here. One thing to mention is that since I wrote the Cliffs Notes last month, I have begun seeing a new sleep specialist. I still have the other one for the medical side of things. The new guy, whom I will call Dr. Eric, is a psychologist specializing in behavioral sleep medicine. I have seen him twice, and I like him.
I am still on Aubagio 14 mg daily. No issues except a bunch of eczema, which is not normal for me. I have a steroid cream for it. Small price to pay if it helps my MS.
1/14/13
Still experiencing frequent MS flare ups. Currently:
·
Right side weakness (mild)
·
Burning pain—legs (above knees), hips, pelvis,
trunk
·
Difficulty sleeping
o Fall
asleep fine at night
o Awaken
5-10 times each night, fall asleep quickly each time
o Daytime
sleepiness, occasionally falling asleep during the day
·
Fatigue
MS Clinic – Dr. Rick at
·
11/9/12
Discontinued study medication (probably Avonex) due to lack of efficacy
·
Continuing in the study with lab work, exams,
MRIs, etc.
·
12/7/12
Began Aubagio 14 mg daily
Sleep Clinic – Dr. Goola at
·
9/22/12 Difficulty
sleeping began at the same time as a flare up
·
9/25/12-11/15/12
Dr. Rick prescribed Ambien CR 12.5 mg, slept 5-6 hours straight
·
11/14/12
First appointment with Dr. Goola
·
11/25/12
Sleep study
o No
apnea
o Identified
disordered sleep architecture – frequent awakenings, high percentage levels 1
and 3, low percentage REM.
·
1/4/13
Appointment, received lab results from 11/17/13
o Anemia
and fatigue dx
o Thyroid
and CBC normal
o Referred
to sleep behavioral health program at Bayview
o Recommended
start taking iron
·
4/26/13
Next appointment
Pain Clinic – Dr. Chris at
·
12/27/12 Recommended
spinal cord stimulator from Medtronics
·
1/8/13
Received psych clearance from Dr. Sally
·
In process of scheduling appointment for trial
of SCS
Oral Surgery – Dr. Ned in
·
12/21/12
Post and crown fell out
·
1/7/13
Recommended implant, sinuses and bone look healthy
·
1/16/13
Appointment for implant
Psychology – Ruth in
·
Continuing to see her every 2-3 weeks for
counseling
Thursday, December 6, 2012
Hello Aubagio!
I said a not-terribly-fond farewell to Avonex a month ago, and today I received my first shipment of Aubagio. I guess I should not have been surprised at the small package, but of course it is only a few pills. Exactly 28, to be highly exact. I find that annoying, because a prescription should be for 30 pills--30 days. With 28 pills in the pack, I will need to refill it more often, which means paying a bit more each year. Whatever, at least I have insurance.
If any of you MSers stumbles across this blog, it took exactly three weeks for my insurance to approve Aubagio.
I am excited to begin taking this medication tomorrow! And I have an appointment at the MS clinic. Good timing. If I have any odd side effects, I will be there. But I doubt anything serious will happen, because Aubagio is not associated with serious, acute side effects.
My appointment tomorrow is the kind I like yet do not like. I will have neuro exams by my neurologist, Dr. Rick, and by someone else. I have not met him (or her?). I hope he is more personable than the Asian chick who freaked out because I told her that she had started her period... on her skirt. Hehe, that loosened her up a bit. I also have cognitive testing (brief) and the usual bloodwork. Also questionnaires. All of that will allegedly by done in two hours. Bulllll.....
I like to have the testing done, because sometimes I surprise myself with what I can and cannot do. I am introspective and analytical, so I nerd out on data. But I do not like this kind of visit, because they will probably make me do the walk. MSers know this one: walk until you go 500 meters or drop, whichever happens first. And I have made the 500 meters every time, but it is by the skin of my teeth. I am totally wiped out after that. That is when I CBT myself: I can stay if I am too tired to drive. But of course I never stay, because when I am worn out, I just want to lie on my couch at home.
 |
| Click to Enlarge |
I am excited to begin taking this medication tomorrow! And I have an appointment at the MS clinic. Good timing. If I have any odd side effects, I will be there. But I doubt anything serious will happen, because Aubagio is not associated with serious, acute side effects.
My appointment tomorrow is the kind I like yet do not like. I will have neuro exams by my neurologist, Dr. Rick, and by someone else. I have not met him (or her?). I hope he is more personable than the Asian chick who freaked out because I told her that she had started her period... on her skirt. Hehe, that loosened her up a bit. I also have cognitive testing (brief) and the usual bloodwork. Also questionnaires. All of that will allegedly by done in two hours. Bulllll.....
I like to have the testing done, because sometimes I surprise myself with what I can and cannot do. I am introspective and analytical, so I nerd out on data. But I do not like this kind of visit, because they will probably make me do the walk. MSers know this one: walk until you go 500 meters or drop, whichever happens first. And I have made the 500 meters every time, but it is by the skin of my teeth. I am totally wiped out after that. That is when I CBT myself: I can stay if I am too tired to drive. But of course I never stay, because when I am worn out, I just want to lie on my couch at home.
Sleep Is Improving
I wanted to add an update on the delightful topic of sleep. I am sleeping better than I was last month. I wonder if it is related to the general healing since that time, a new med, or what. I seriously doubt it is from the advice of the sleep specialist, except for falling asleep faster. I am definitely falling asleep quickly--within 15 minutes.
My total sleep time is a little more, but I am still waking up more than I should. Certainly more than I want to. Five times each of the last two nights, for example. And I think I may be waking up more often. I am pretty dumb at night, sometimes almost not writing on my paper. I wonder if there are times I do not write the wake up time and just go back to sleep.
So... I am happy that I am falling asleep faster and generally going back to sleep quickly when I wake up. But I still want to sleep better!
{Click to enlarge}
My total sleep time is a little more, but I am still waking up more than I should. Certainly more than I want to. Five times each of the last two nights, for example. And I think I may be waking up more often. I am pretty dumb at night, sometimes almost not writing on my paper. I wonder if there are times I do not write the wake up time and just go back to sleep.
So... I am happy that I am falling asleep faster and generally going back to sleep quickly when I wake up. But I still want to sleep better!
Tuesday, November 27, 2012
Sleep Study
Whoa, I have no blogged about my sleep study!
I had EEG leads stuck to my scalp and face, EKG leads stuck to my chest and legs (checking for restless legs.. cool), a band around my stomach, another one around my check, plus a power pack on my check and a band around my chest to hold it on. I also had a sticker on my upper lip, sticking in my nose, to which was attached a cannula and tubing. Sensing my breathing.
All the EKG and EEG wires were banded together behind my head and plugged into a device on the bed. Then I was expected to sleep. That did not really happen.
My sleep technician was really nice. Of course she could not tell me if they saw any problems with my sleep--besides, oh, not sleeping. She tried to make me feel comfortable there. She talked with me while she was setting me up (which took quite a while), asking about my health and stuff. She did not know anything about MS, so I explained it. She chatted with me about work and stuff. Just about my life. Easy to get along with and very calming, which was perfect for the sleep center.
For the first time, I did not cry when I told someone I have MS.
I had EEG leads stuck to my scalp and face, EKG leads stuck to my chest and legs (checking for restless legs.. cool), a band around my stomach, another one around my check, plus a power pack on my check and a band around my chest to hold it on. I also had a sticker on my upper lip, sticking in my nose, to which was attached a cannula and tubing. Sensing my breathing.
All the EKG and EEG wires were banded together behind my head and plugged into a device on the bed. Then I was expected to sleep. That did not really happen.
My sleep technician was really nice. Of course she could not tell me if they saw any problems with my sleep--besides, oh, not sleeping. She tried to make me feel comfortable there. She talked with me while she was setting me up (which took quite a while), asking about my health and stuff. She did not know anything about MS, so I explained it. She chatted with me about work and stuff. Just about my life. Easy to get along with and very calming, which was perfect for the sleep center.
For the first time, I did not cry when I told someone I have MS.
Friday, November 23, 2012
Studying Sleep
Two more nights until my sleep study! And it is officially approved by insurance (took until Tuesday), so it is set. I am sure it will still cost an arm and a leg, but it is worth it.
I am going to upload a picture of my sleep diary. Now I knew that I have been struggling with sleep, but wow, adding up the hours just now made a big impact on me.
OK, the picture is bad. I don't feel like getting up to turn on the lights, and the flash of the camera made a glare. The hours of the day are across the top. I make vertical lines for sleep/wake, diagonal lines for lying in bed awake, and shading for sleep. On the right side, I recorded the total hours I slept and the number of awakenings (not counting last awakening for morning). Ignore the top line, because I took Ambien CR that night.
Yeah, so 6:30 is better than 2:45, but it is still not functional for a person with MS. For me! That one day I got 8 hours of sleep, but it was still broken up. Not good. Also, I cannot sleep until 8:45 on a work day, so I would not normally have been able to get that much sleep. My alarm usually would go off at 7:00/7:30.
In related news, I am off tramadol as of today. My sleep specialist speculated that it could affect my sleep, being an opioid. (Despite me being on such a low dose that I had to cut the smallest pill on the market in half.) I have been stepping down slowly, and I had no trouble coming off it. I would say that my nerve pain in my left leg/buttock has been worse, but I will give it some time. The sleep specialist said that I would know whether the tramadol was affecting my sleep within three or four days.
Not related but totally awesome: The increased Trileptal has taken care of my trigeminal nerve pain! When I saw my neurologist on Tuesday, he increased it to three times daily. I am only taking 150 mg, which is not a lot. Dr. Rick was ready to increase from 150 mg 2x daily to 300 mg 2x daily, but I asked for the smaller increase. I can always increase more if needed.
Today was rough, which should not be surprising if you look at the sleep I got last night. But I had great days yesterday (Thanksgiving) and the day before--despite doing quite a bit of cooking. My pain has been down, and my fatigue, while not allowing me to live close to the way I did before, has been much better. I am able to sit up through most of the evening.
Tonight I am really trying to stay up until my eyes are closing, like I did yesterday. Which turned out to be 10:30. Whatever. It is so hard to stay up. It means fighting your body's need for sleep until you lose the battle. What makes it so hard is that the pain increased as the night wears on... agh...
I am going to upload a picture of my sleep diary. Now I knew that I have been struggling with sleep, but wow, adding up the hours just now made a big impact on me.
{Clickable}
OK, the picture is bad. I don't feel like getting up to turn on the lights, and the flash of the camera made a glare. The hours of the day are across the top. I make vertical lines for sleep/wake, diagonal lines for lying in bed awake, and shading for sleep. On the right side, I recorded the total hours I slept and the number of awakenings (not counting last awakening for morning). Ignore the top line, because I took Ambien CR that night.
Yeah, so 6:30 is better than 2:45, but it is still not functional for a person with MS. For me! That one day I got 8 hours of sleep, but it was still broken up. Not good. Also, I cannot sleep until 8:45 on a work day, so I would not normally have been able to get that much sleep. My alarm usually would go off at 7:00/7:30.
In related news, I am off tramadol as of today. My sleep specialist speculated that it could affect my sleep, being an opioid. (Despite me being on such a low dose that I had to cut the smallest pill on the market in half.) I have been stepping down slowly, and I had no trouble coming off it. I would say that my nerve pain in my left leg/buttock has been worse, but I will give it some time. The sleep specialist said that I would know whether the tramadol was affecting my sleep within three or four days.
Not related but totally awesome: The increased Trileptal has taken care of my trigeminal nerve pain! When I saw my neurologist on Tuesday, he increased it to three times daily. I am only taking 150 mg, which is not a lot. Dr. Rick was ready to increase from 150 mg 2x daily to 300 mg 2x daily, but I asked for the smaller increase. I can always increase more if needed.
Today was rough, which should not be surprising if you look at the sleep I got last night. But I had great days yesterday (Thanksgiving) and the day before--despite doing quite a bit of cooking. My pain has been down, and my fatigue, while not allowing me to live close to the way I did before, has been much better. I am able to sit up through most of the evening.
Tonight I am really trying to stay up until my eyes are closing, like I did yesterday. Which turned out to be 10:30. Whatever. It is so hard to stay up. It means fighting your body's need for sleep until you lose the battle. What makes it so hard is that the pain increased as the night wears on... agh...
Sunday, November 18, 2012
Good Day!
I had a good day today! I love life without that horrible fatigue. My fatigue level is at maybe 4 today. I suppose that if I had to go to work it might be worse, but I did make it through all of church without issues. The piano pedals did not kill my leg muscles.
I sure hope the good times keep rolling.
I sure hope the good times keep rolling.
Saturday, November 17, 2012
Let It Out
My shrink said I need to let the anger out somehow. I get so angry when normal people complain about being sick. Or complain about other problems that are really nothing [compared to a degenerative disease].
I feel like saying, "Oh, you think your flu is bad? Imagine if your head felt like that every day--and you still went to work."
One person really bugs me sometimes. I know that he does not mean to, but he does. He says that I can tell him how I am doing, but I feel like I cannot. I do not like to complain in general, and definitely not if I do not talk with a person much.
Here is what bugs me: You look a lot better. You seem better today. You sound better. You seem like you feel okay today.
Here is the deal: I usually am not better. I am usually busting my butt to put on the Normal Show.
And if I am better, it is not much better, and it probably will not last long.
When I hear that I seem better, it ticks me off. It makes me feel sad. It invalidates everything I am going through. And what can I say? "Well, actually..."
I try to tell myself that it is just ignorance, not something that a person is doing to hurt me. It does not help very much, though.
Oh, right, I was letting it out.
That makes me really annoyed when I hear it. I have tried to educate that person, but I guess it was not enough. It takes so much time and effort to get people to understand this. I do not know whether it is always worth the effort or how to tell when it is. I do not have effort to spare.
I feel like saying, "Oh, you think your flu is bad? Imagine if your head felt like that every day--and you still went to work."
One person really bugs me sometimes. I know that he does not mean to, but he does. He says that I can tell him how I am doing, but I feel like I cannot. I do not like to complain in general, and definitely not if I do not talk with a person much.
Here is what bugs me: You look a lot better. You seem better today. You sound better. You seem like you feel okay today.
Here is the deal: I usually am not better. I am usually busting my butt to put on the Normal Show.
And if I am better, it is not much better, and it probably will not last long.
When I hear that I seem better, it ticks me off. It makes me feel sad. It invalidates everything I am going through. And what can I say? "Well, actually..."
I try to tell myself that it is just ignorance, not something that a person is doing to hurt me. It does not help very much, though.
Oh, right, I was letting it out.
That makes me really annoyed when I hear it. I have tried to educate that person, but I guess it was not enough. It takes so much time and effort to get people to understand this. I do not know whether it is always worth the effort or how to tell when it is. I do not have effort to spare.
Friday, November 16, 2012
They Took It Back!
My sleep study was canceled, because my insurance would not preauthorize is. They said that they need up to five business days. Whatever!
The secretary said it is usually two to three days for the approval. Unfortunately next Thursday, Friday, and Saturday are full, so my appointment is next Sunday, November 25.
The secretary said it is usually two to three days for the approval. Unfortunately next Thursday, Friday, and Saturday are full, so my appointment is next Sunday, November 25.
Sleep Specialist
I saw the sleep specialist a few days ago. She is a PhD nurse practitioner working at a sleep clinic. I will call her Goola.
She is not sure why my sleep has become light and fragmented, but she would like me to try behavioral strategies for it. She said not to get in bed until I am so tired I cannot keep my eyes open. Maybe 2:00 am. I was surprised by that advice, to say the least. Usually you read that keeping a consistent bedtime is the best way to sleep well.
Goola said not to stay in bed awake more than 20 minutes. I protested that I am way too tired to get up. She said that I must train my brain that bed is for sleep. It does make sense, but she needs to keep in mind that MS involves significant fatigue. I may not be able to get out of bed when I am extremely fatigued. But I said that I would try.
I asked what to do if I wake up after I have slept (at 2:00 am or whenever I am too tired to keep my eyes open). She said that she is confident that I will remain asleep after I have fallen asleep.
Goola wants to check my thyroid and iron levels. Deficiencies in those can negatively affect sleep. Fasting blood draw... Boo.
Yesterday someone called me about scheduling a sleep study. Unfortunately I missed the call, because I was at work. The reason that was very unfortunately is because the sleep clinic works on a message-only phone system. You can never speak to a person! So I have to hope that they call back at a time I can answer the phone.
Last night I stayed up until 12:45 am, and I was so tired. But I did not fall asleep until 1:45! I slept 1:45-2:30, 5:30-6:30, and 6:45-7:45. So obviously Goola's prediction that I would stay asleep was incorrect. I will keep trying, though.
I emailed Dr. Rick and Alyssa to update them on that and on how I am doing with the trigeminal nerve pain that appeared on Monday. Honestly, I am doing a lot better the last two or three days. The Trileptal seems to be working! My face pain is a lot better. Before it was peaking at 10 and holding steady around 8. Now it is peaking at 8 and holding steady around 3-6.
The most amazing and confusing change is that my fatigue has been better the last few days. Well, yesterday I got enough sleep, because I took Ambien CR. But today I got less than three hours of sleep (not even three hours straight), and I am handling it so far. I am tired.
I have to admit that I have some issues today that I think are from lack of sleep. Tremor in my left hand, weakness in my legs, spasticity in my legs.
Alyssa called today to check on me, hear about the sleep appointment, and confirm which medications I am taking right now. It was nice to talk to her. She said I sound better than when she saw me a week ago. We also discussed the sleep study plan: visits every four weeks for the next few months, with quarterly visits after that. I still need to do the cognitive testing, and I guess the MRIs. I wonder if Dr. Rick will have access to the MRIs. He normally would not.
Oh my, I am getting really tired now. How on earth can I survive until 1:00 am to go to bed? I hope I can sleep tonight.
As I was getting ready to post this, I got a call from the sleep center. I have an appointment for tomorrow at 9:00 pm!
She is not sure why my sleep has become light and fragmented, but she would like me to try behavioral strategies for it. She said not to get in bed until I am so tired I cannot keep my eyes open. Maybe 2:00 am. I was surprised by that advice, to say the least. Usually you read that keeping a consistent bedtime is the best way to sleep well.
Goola said not to stay in bed awake more than 20 minutes. I protested that I am way too tired to get up. She said that I must train my brain that bed is for sleep. It does make sense, but she needs to keep in mind that MS involves significant fatigue. I may not be able to get out of bed when I am extremely fatigued. But I said that I would try.
I asked what to do if I wake up after I have slept (at 2:00 am or whenever I am too tired to keep my eyes open). She said that she is confident that I will remain asleep after I have fallen asleep.
Goola wants to check my thyroid and iron levels. Deficiencies in those can negatively affect sleep. Fasting blood draw... Boo.
Yesterday someone called me about scheduling a sleep study. Unfortunately I missed the call, because I was at work. The reason that was very unfortunately is because the sleep clinic works on a message-only phone system. You can never speak to a person! So I have to hope that they call back at a time I can answer the phone.
Last night I stayed up until 12:45 am, and I was so tired. But I did not fall asleep until 1:45! I slept 1:45-2:30, 5:30-6:30, and 6:45-7:45. So obviously Goola's prediction that I would stay asleep was incorrect. I will keep trying, though.
I emailed Dr. Rick and Alyssa to update them on that and on how I am doing with the trigeminal nerve pain that appeared on Monday. Honestly, I am doing a lot better the last two or three days. The Trileptal seems to be working! My face pain is a lot better. Before it was peaking at 10 and holding steady around 8. Now it is peaking at 8 and holding steady around 3-6.
The most amazing and confusing change is that my fatigue has been better the last few days. Well, yesterday I got enough sleep, because I took Ambien CR. But today I got less than three hours of sleep (not even three hours straight), and I am handling it so far. I am tired.
I have to admit that I have some issues today that I think are from lack of sleep. Tremor in my left hand, weakness in my legs, spasticity in my legs.
Alyssa called today to check on me, hear about the sleep appointment, and confirm which medications I am taking right now. It was nice to talk to her. She said I sound better than when she saw me a week ago. We also discussed the sleep study plan: visits every four weeks for the next few months, with quarterly visits after that. I still need to do the cognitive testing, and I guess the MRIs. I wonder if Dr. Rick will have access to the MRIs. He normally would not.
Oh my, I am getting really tired now. How on earth can I survive until 1:00 am to go to bed? I hope I can sleep tonight.
As I was getting ready to post this, I got a call from the sleep center. I have an appointment for tomorrow at 9:00 pm!
Monday, November 12, 2012
Hold the Phone...
More changes!
Because of my delicious, new pain, Dr. Rick said to hold off on switching from gabapentin to Lyrica. He wants to wait until I am more stable (I did not even laugh when he said it). He gave me a new medication called Trileptal. Another seizure medication, which often helps with trigeminal nerve pain.
I either have trigeminal nerve pain or "ice pick headache." He is not sure which, but he is going with trigeminal nerve pain meds to see how I respond. I began taking Trileptal today. It is the kind of drug you have to take everyday and build up a steady state with, not like the tramadol, where I can take more or less depending on how much pain I have.
Speaking of tramadol, Dr. Rick again reminded me to cut it to 25 mg. Ideally, he would like to see me off it, because I have quite a few drugs that can interact. Tramadol, gabapentin, Trileptal, and Ambien CR. And Vicodin, but I will not need to take that anymore, since I stopped the Avonex. Or I hope I will not need it again. It stinks at helping nerve pain, so probably not.
I have had a weird headache today, on the top of my head. The trigeminal nerve pain started in the afternoon, but then it got a little better. Maybe the Trileptal is already working? Whatever, I will take it.
So that is the bad news. The good news is that I will stay in the study! I know: How is that good news?
Basically, I have three options:
1. Continue in the study with the shots (which I know means Avonex, although technically it could be either Avonex or daclizumab.
2. Continue to be followed by the study, with the regular visits and labwork (all free). I could pursue any line of treatment I choose but would have to pay for the [pricey] MS drugs.
3. Leave the study altogether.
Option 1 is pretty much out. It would be nice to have free MS drugs (the shots), but free is not so great if they are not working. The only real advantage to option 3 would be not driving into the city every month if I were feeling okay and did not need to be seen. But I think the benefits of free visits when I need them (um, all the time) and free labwork outweighs that drawback. So I chose option 2.
I have not heard from the nurse yet about my next appointment, which should be next week. Oh, and I have not heard back from my internist's office about psychiatrist referrals. I guess I will add that to my to-do list for tomorrow (like I maintain a to-do list...).
Because of my delicious, new pain, Dr. Rick said to hold off on switching from gabapentin to Lyrica. He wants to wait until I am more stable (I did not even laugh when he said it). He gave me a new medication called Trileptal. Another seizure medication, which often helps with trigeminal nerve pain.
I either have trigeminal nerve pain or "ice pick headache." He is not sure which, but he is going with trigeminal nerve pain meds to see how I respond. I began taking Trileptal today. It is the kind of drug you have to take everyday and build up a steady state with, not like the tramadol, where I can take more or less depending on how much pain I have.
Speaking of tramadol, Dr. Rick again reminded me to cut it to 25 mg. Ideally, he would like to see me off it, because I have quite a few drugs that can interact. Tramadol, gabapentin, Trileptal, and Ambien CR. And Vicodin, but I will not need to take that anymore, since I stopped the Avonex. Or I hope I will not need it again. It stinks at helping nerve pain, so probably not.
I have had a weird headache today, on the top of my head. The trigeminal nerve pain started in the afternoon, but then it got a little better. Maybe the Trileptal is already working? Whatever, I will take it.
So that is the bad news. The good news is that I will stay in the study! I know: How is that good news?
Basically, I have three options:
1. Continue in the study with the shots (which I know means Avonex, although technically it could be either Avonex or daclizumab.
2. Continue to be followed by the study, with the regular visits and labwork (all free). I could pursue any line of treatment I choose but would have to pay for the [pricey] MS drugs.
3. Leave the study altogether.
Option 1 is pretty much out. It would be nice to have free MS drugs (the shots), but free is not so great if they are not working. The only real advantage to option 3 would be not driving into the city every month if I were feeling okay and did not need to be seen. But I think the benefits of free visits when I need them (um, all the time) and free labwork outweighs that drawback. So I chose option 2.
I have not heard from the nurse yet about my next appointment, which should be next week. Oh, and I have not heard back from my internist's office about psychiatrist referrals. I guess I will add that to my to-do list for tomorrow (like I maintain a to-do list...).
Sunday, November 11, 2012
Not Crazy
On Friday, Dr. Rick asked me about my mood, as they delicately call it. I told him that I wish I could die but do not have plans to hurt myself. He asked why, and I explained that I am sick and in pain, and that I cannot do most of the things I like to do. Dr. Rick wanted to admit me to the hospital, because he wants psychiatry to see me, and being admitted is the only way to make that happen quickly. He also wanted to have my pain monitored and try to get it under control, but I think mainly he wanted to prevent me from killing myself.
I was adamant that I do not want to be hospitalized.
1. I already have trouble sleeping. The last thing I need it machines beeping and people making noise 24/7.
2. Dr. Rick is changing my pain meds (gabapentin to Lyrica). The pain is one of the reasons I want to die, so if that gets better, I will not want to die. I pointed out that my severe depression began immediately after Alyssa told me that there was nothing to do for my fatigue and little to do for my pain. (I did not dime her out but said "at my last appointment I learned that...") Fix my pain!
3. I would be anxious in the hospital, because I do not trust them. Doctors, technicians, etc. I do not trust that they are identifying my problems correctly or that they will listen to me. Or that I will be able to express myself well.
4. I would be bored in the hospital. There is nothing to do there! I can kill a lot of time on google, but not that much.
5. I cannot afford to miss work.
6. I do not want a psych label, because I do not want doctors to think that my physical problems are in my head. I have enough trouble getting doctors to listen; I do not need that label following me.
I did not tell Dr. Rick all of that, just reasons 1 and 2. Dr. Rick stared at me intently, obviously trying to decide whether to trust me. He decided that he could. Maybe.
Dr. Rick pointed out that this is a vulnerable time. I am changing six medications this week, all of which can have psychoactive effects. Also, I have reacted poorly to medications in the past. Dr. Rick said that he would allow me to make these medication changes on an outpatient basis only if I maintain strong communication with them. He wrote down the titration directions for gabapentin and Lyrica, along with the other changes. He trusted me to understand what to do, but he did not completely trust me to tell them if my mood dropped. I had to promise to call him if I felt the urge to kill myself, and he wrote down his cell number on the directions.
I already had it.
I have never used his cell number, because I have never feel like my problems are major emergencies. I cannot imagine calling if I wanted to kill myself. A person who wants to die is not going to call. A person who calls is looking for attention. I have engaged in attention-seeking behavior when I was young, but not anymore.
My shrink made the same request weeks ago, that I call her if I want to die. Of course I did not. How would it help? She cannot make the pain and fatigue go away. She did say that she knows someone who is truly suicidal would not call, because they want to die, not be talked out of it.
I would consider calling a friend, I guess. Maybe the MS Society hotline. Maybe a suicide hotline. Maybe Alyssa. Right now I have no plans to kill myself, mainly because I do not want to scar the person who finds me. And I do not want to leave my bug alone.
The bottom line is that I am clearly of sound mind, so Dr. Rick could not admit me against my wishes. He wanted to see me back in two weeks, though. And he insisted that I make an appointment with a psychiatrist. He also referred me to a pain specialist.
Good-bye Avonex, Hello Aubagio
So much to say!
I went for my regular appointment last Friday and ended up dropping out of the study. Avonex was not a good fit for me--it is obviously not helping.
My neurologist gave me the choice of Copaxone and Aubagio as the next logical steps. Let's see...
Copaxone
-On the market since 1996
-Daily subcutaneous injection (although the manufacturer is applying for FDA approval of a higher dose given three times per week)
-Immunomodulator
-Commonly causes site reactions like pain, redness, and hard lumps
-Commonly causes fat breakdown under the skin, making your thighs and stomach dimply
-Can have cardiovascular side effects, along with many others
-May reduce relapses by about 30%
Aubagio
-On the market since October 2012
-Daily pill
-Can cause abnormal liver tests and hair loss (but apparently not a ton of hair loss)
-May reduce relapses by about 30%
I chose Augabio. Wouldn't you?
My neurologist is not confident that anything is going to work for me. He said that my disease characteristics are similar to a subgroup that do not respond well to anything. Tysabri is a possibility in the future. I am JC positive, which puts me at higher risk for serious complications, but I would still try it. Matter of fact, I would try it now. Some people actually feel better on it. The best I can hope for with other meds, including Aubagio, is to feel the same and get worse less quickly than I would otherwise. Another medication I could try is BG-12, which is an oral medication expected to be FDA-approved early next year.
That is not the only med change up for me. He is transitioning me from gabapentin to Lyrica, reducing my tramadol (I know: huh??), and trying Celexa instead of Cymbalta. I am still open to trying Cymbalta in the future if the start-up phase were slower. He did give me a low dose of Celexa, 10 mg. I started it yesterday. It makes me feel weird in a not-good way. And I think it makes me feel sick. But that is hard to say, because I also have...
New pain! In my face! It began on Wednesday or Thursday and was about a 6 until it suddenly shot up to 8-9 yesterday and 9-10 today. Seem to be trigeminal nerve pain. Ironically, it is commonly called "suicide pain." Like I need anything else to make me want to leave earth. Here is where the pain is...
See the orange lines? My pain is along the one going straight up, the one going to the eye and up to the forehead, and the one going along the cheek to the upper teeth. It feels like someone is stabbing me in the face with a hot poker. My right eye itself kind of hurts, but the really bad pain is above/behind it. It also hurts on the ganglion, the area where the white label line is pointing.
I drew on my face with eyeliner, showing where the pain is, and I emailed a picture of that to Dr. Rick and Alyssa. I know they are not working today, but maybe they will see it tomorrow. If not, I will call.
Otherwise I am the same. My burning pain is holding steady around 6-8. My left foot is killing me, has been all week. That might be getting worse, actually. It is not bad right now, maybe a 6, but it has been hanging around a 9. My walking is the same or maybe better. I had a sore throat this week, but it is tons better yesterday and today.
Today my hands hurt, but not the skin. Feels musculosketal, so I doubt it is from MS. Maybe from Celexa.
I am going to try icing my face...
I went for my regular appointment last Friday and ended up dropping out of the study. Avonex was not a good fit for me--it is obviously not helping.
My neurologist gave me the choice of Copaxone and Aubagio as the next logical steps. Let's see...
Copaxone
-On the market since 1996
-Daily subcutaneous injection (although the manufacturer is applying for FDA approval of a higher dose given three times per week)
-Immunomodulator
-Commonly causes site reactions like pain, redness, and hard lumps
-Commonly causes fat breakdown under the skin, making your thighs and stomach dimply
-Can have cardiovascular side effects, along with many others
-May reduce relapses by about 30%
Aubagio
-On the market since October 2012
-Daily pill
-Can cause abnormal liver tests and hair loss (but apparently not a ton of hair loss)
-May reduce relapses by about 30%
I chose Augabio. Wouldn't you?
My neurologist is not confident that anything is going to work for me. He said that my disease characteristics are similar to a subgroup that do not respond well to anything. Tysabri is a possibility in the future. I am JC positive, which puts me at higher risk for serious complications, but I would still try it. Matter of fact, I would try it now. Some people actually feel better on it. The best I can hope for with other meds, including Aubagio, is to feel the same and get worse less quickly than I would otherwise. Another medication I could try is BG-12, which is an oral medication expected to be FDA-approved early next year.
That is not the only med change up for me. He is transitioning me from gabapentin to Lyrica, reducing my tramadol (I know: huh??), and trying Celexa instead of Cymbalta. I am still open to trying Cymbalta in the future if the start-up phase were slower. He did give me a low dose of Celexa, 10 mg. I started it yesterday. It makes me feel weird in a not-good way. And I think it makes me feel sick. But that is hard to say, because I also have...
New pain! In my face! It began on Wednesday or Thursday and was about a 6 until it suddenly shot up to 8-9 yesterday and 9-10 today. Seem to be trigeminal nerve pain. Ironically, it is commonly called "suicide pain." Like I need anything else to make me want to leave earth. Here is where the pain is...
See the orange lines? My pain is along the one going straight up, the one going to the eye and up to the forehead, and the one going along the cheek to the upper teeth. It feels like someone is stabbing me in the face with a hot poker. My right eye itself kind of hurts, but the really bad pain is above/behind it. It also hurts on the ganglion, the area where the white label line is pointing.
I drew on my face with eyeliner, showing where the pain is, and I emailed a picture of that to Dr. Rick and Alyssa. I know they are not working today, but maybe they will see it tomorrow. If not, I will call.
Otherwise I am the same. My burning pain is holding steady around 6-8. My left foot is killing me, has been all week. That might be getting worse, actually. It is not bad right now, maybe a 6, but it has been hanging around a 9. My walking is the same or maybe better. I had a sore throat this week, but it is tons better yesterday and today.
Today my hands hurt, but not the skin. Feels musculosketal, so I doubt it is from MS. Maybe from Celexa.
I am going to try icing my face...
Monday, November 5, 2012
MS Is BS
I am so angry right now. Irritated. No, angry.
I feel so sick today. This is one of those "like I've been run over by a truck" days. And I am angry! I guess I am angry because I did not see it coming (although I did not feel well yesterday), and I just started to get over a bad one--my fatigue was down to a 7 a lot of the time, and now it is back up at a 9. No, 9.6. Not again! And I am angry, because I am so sick of it. I am so done with MS.
My burning pain has been better the last week. Level 6-8 instead of 8-10. And today it is worse. New area: my shoulders and neck! And another new place... weird... right around my bottom lip. Of course, many burning areas have been that way before.
Last night it was hard to find a comfortable position, because everything hurts. Lying on my left side is out, because my left leg and foot will begin to lose feeling and will have excruciating pain. But my right hip muscle started acting up on Friday, so lying on my right side also hurts. Both nights I tried for several hours to sleep on my own but ended up taking Ambien CR.
But I woke up throughout the night! Even drugged. That is the way is has been for a week, and it makes me nervous.
This morning I realized that, although I want to be able to sleep on my own, it is stupid not to take the medicine right away. If I take it eight hours before I need to get up, then eight hours is all the sleep I will get.. and that is not enough. Not by a long shot. I need to take the medicine right away, and hope to get 9-10 hours of sleep. I read that I should be getting 12-16 hours of rest (not all sleep, but a lot) every day while my body is trying to heal. MS in remission needs more like 10 hours. Ha, I am so not in remission.
The thing that has been disabling me the most this week has been fatigue. It is so bad that it borders on vertigo. It is hard to hold my head up. It makes me a little sick to my stomach.
When I am fatigued, my brain slows down. It is harder to pay attention. Harder to understand people. Harder to express myself. It is much easier to sit and watch, pretend I am listening. Just watching takes energy.
And that issue might be (hopefully is) why I am so sick today. Yesterday I went to a friend's birthday celebration right after church. It was a 45-minute ride--I did not drive--and a 3-hour celebration. I talked, laughed, and had fun. But I could feel myself fading. I felt like I might vomit from the fatigue, from my head spinning. By the time we left, I could barely walk. MS has taken so much. I cannot even have fun anymore.
On the way home, when I was wishing to die, I thought that I must be feeling depression. Like hm, this is worse again, maybe I do need that Cymbalta. And I realized that my emotional state truly is a result of my health. If I have a lot of pain or fatigue, I want to die. Mostly fatigue, honestly--until pain gets to a 9 or 10, fatigue is worse. But if I feel "good enough," like if my pain is 7 and my fatigue is 7, I am happy. Those times are infrequent. Honestly, my fatigue is rarely below 8 or 9.
With my sleep problem already so bad, I do not know if it is a good idea to try Cymbalta again. I am considering going to a natural food store to get empty capsules, so I can half the dose. I know that 30 mg is way too much to start on, based on my reaction last time. But... again, with my sleep being so bad, maybe it would have been bad that week even if I had not taken the Cymbalta. I will admit that the hours straight of panic and anxiety were awful, but no more awful than this burning pain. If the medicine worked for the pain, it would be worth going through the panic temporarily. It did get better after the first few days. Taking a half dose might help me start off more gently. So I am considering trying again.
I have an appointment at the MS clinic on Friday. Ah, I just realized that I need a ride! Well, I do not NEED one, but if I have one, I will be less miserable. And less likely to get stuck in the city, too tired to drive home.
OK, so clinic appointment. It is just with Alyssa, my nurse. She and I traded some emails last week, and she told me that her mother suffers from a mysterious neurological disease that involves chronic pain. No one knows what the problem is. She understands the psychological impact of this kind of thing, on the patient and on the family. Hm. So there is a good chance that I will cry at my appointment on Friday. I cry almost every day at home, but I try not to cry outside of the house.
I suppose that all the emotional struggle makes my fatigue worse, or it certainly cannot help. But I do not know what to do about that. Would it not be bad to bottle it all up? I do not know.
Today, a really sick day, is one of those times that I am scared for the future. Scared for today. Alyssa reminded me that MS is a heavily-researched field and new treatments are coming to market, and I reminded her that they are not making anybody better. "Disabled less quickly" is considered a success. I told her that I am already hanging on my a thread, that I cannot imagine getting worse.
I feel so sick today. This is one of those "like I've been run over by a truck" days. And I am angry! I guess I am angry because I did not see it coming (although I did not feel well yesterday), and I just started to get over a bad one--my fatigue was down to a 7 a lot of the time, and now it is back up at a 9. No, 9.6. Not again! And I am angry, because I am so sick of it. I am so done with MS.
My burning pain has been better the last week. Level 6-8 instead of 8-10. And today it is worse. New area: my shoulders and neck! And another new place... weird... right around my bottom lip. Of course, many burning areas have been that way before.
Last night it was hard to find a comfortable position, because everything hurts. Lying on my left side is out, because my left leg and foot will begin to lose feeling and will have excruciating pain. But my right hip muscle started acting up on Friday, so lying on my right side also hurts. Both nights I tried for several hours to sleep on my own but ended up taking Ambien CR.
But I woke up throughout the night! Even drugged. That is the way is has been for a week, and it makes me nervous.
This morning I realized that, although I want to be able to sleep on my own, it is stupid not to take the medicine right away. If I take it eight hours before I need to get up, then eight hours is all the sleep I will get.. and that is not enough. Not by a long shot. I need to take the medicine right away, and hope to get 9-10 hours of sleep. I read that I should be getting 12-16 hours of rest (not all sleep, but a lot) every day while my body is trying to heal. MS in remission needs more like 10 hours. Ha, I am so not in remission.
The thing that has been disabling me the most this week has been fatigue. It is so bad that it borders on vertigo. It is hard to hold my head up. It makes me a little sick to my stomach.
When I am fatigued, my brain slows down. It is harder to pay attention. Harder to understand people. Harder to express myself. It is much easier to sit and watch, pretend I am listening. Just watching takes energy.
And that issue might be (hopefully is) why I am so sick today. Yesterday I went to a friend's birthday celebration right after church. It was a 45-minute ride--I did not drive--and a 3-hour celebration. I talked, laughed, and had fun. But I could feel myself fading. I felt like I might vomit from the fatigue, from my head spinning. By the time we left, I could barely walk. MS has taken so much. I cannot even have fun anymore.
On the way home, when I was wishing to die, I thought that I must be feeling depression. Like hm, this is worse again, maybe I do need that Cymbalta. And I realized that my emotional state truly is a result of my health. If I have a lot of pain or fatigue, I want to die. Mostly fatigue, honestly--until pain gets to a 9 or 10, fatigue is worse. But if I feel "good enough," like if my pain is 7 and my fatigue is 7, I am happy. Those times are infrequent. Honestly, my fatigue is rarely below 8 or 9.
With my sleep problem already so bad, I do not know if it is a good idea to try Cymbalta again. I am considering going to a natural food store to get empty capsules, so I can half the dose. I know that 30 mg is way too much to start on, based on my reaction last time. But... again, with my sleep being so bad, maybe it would have been bad that week even if I had not taken the Cymbalta. I will admit that the hours straight of panic and anxiety were awful, but no more awful than this burning pain. If the medicine worked for the pain, it would be worth going through the panic temporarily. It did get better after the first few days. Taking a half dose might help me start off more gently. So I am considering trying again.
I have an appointment at the MS clinic on Friday. Ah, I just realized that I need a ride! Well, I do not NEED one, but if I have one, I will be less miserable. And less likely to get stuck in the city, too tired to drive home.
OK, so clinic appointment. It is just with Alyssa, my nurse. She and I traded some emails last week, and she told me that her mother suffers from a mysterious neurological disease that involves chronic pain. No one knows what the problem is. She understands the psychological impact of this kind of thing, on the patient and on the family. Hm. So there is a good chance that I will cry at my appointment on Friday. I cry almost every day at home, but I try not to cry outside of the house.
I suppose that all the emotional struggle makes my fatigue worse, or it certainly cannot help. But I do not know what to do about that. Would it not be bad to bottle it all up? I do not know.
Today, a really sick day, is one of those times that I am scared for the future. Scared for today. Alyssa reminded me that MS is a heavily-researched field and new treatments are coming to market, and I reminded her that they are not making anybody better. "Disabled less quickly" is considered a success. I told her that I am already hanging on my a thread, that I cannot imagine getting worse.
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