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!
Showing posts with label Alyssa. Show all posts
Showing posts with label Alyssa. Show all posts
Friday, November 16, 2012
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.
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.
Wednesday, October 24, 2012
First Days on Cymbalta
Cymbalta has been a little rough. Insomnia breaking through the Ambien, anxiety, lack of appetite, and a touch of nausea. The nausea has been better today. I decided to take the pill in the morning instead of at night, hoping that helps with the insomnia. So I will skip it tonight and take it tomorrow morning.
The anxiety yesterday morning, following the first Cymbalta dose, was insane. No letup from 6:00 AM to about 9:30 AM, off and on after that. It has been tons better today. It hits, but not as badly. Experiencing this anxiety was not enjoyable--I get nervous about things sometimes, but not anxiety like this. It reminded me of Nuvigil, but the anxiety with Cymbalta lasted longer.
My doctor called and emailed yesterday to encourage me to go to the ER. No thanks. I have been sick for weeks--why now? Only because I said that I want to kill myself. I do not see what they could do in the hospital that my doctor cannot do by calling my pharmacy.
I got diagnosed with a yeast infection today. Bad one. I am totally blaming this on the cipro I took a couple of weeks ago.
If I can get over the insomnia, Cymbalta might help. I really want to give it a good chance, because there are not many options left for my burning pain. Well... basically none. When I spoke with my nurse on Monday, she asked when my sleep study is. Oh, sleep study? I do not have one scheduled! Just a consultation! Three more weeks until that.
Last night I took Ambien CR, woke up three times, could not go back to sleep after 6:00 AM, took 10 mg of regular Ambien at 6:30, and got up two hours later. Two hours on 10 mg of Ambien. Most people get eight hours. Even I usually get three to four hours on that dosage. Cymbalta definitely affected my sleep both nights. Hopefully tonight will be better. My sleep problem is bad enough already!
The anxiety yesterday morning, following the first Cymbalta dose, was insane. No letup from 6:00 AM to about 9:30 AM, off and on after that. It has been tons better today. It hits, but not as badly. Experiencing this anxiety was not enjoyable--I get nervous about things sometimes, but not anxiety like this. It reminded me of Nuvigil, but the anxiety with Cymbalta lasted longer.
My doctor called and emailed yesterday to encourage me to go to the ER. No thanks. I have been sick for weeks--why now? Only because I said that I want to kill myself. I do not see what they could do in the hospital that my doctor cannot do by calling my pharmacy.
I got diagnosed with a yeast infection today. Bad one. I am totally blaming this on the cipro I took a couple of weeks ago.
If I can get over the insomnia, Cymbalta might help. I really want to give it a good chance, because there are not many options left for my burning pain. Well... basically none. When I spoke with my nurse on Monday, she asked when my sleep study is. Oh, sleep study? I do not have one scheduled! Just a consultation! Three more weeks until that.
Last night I took Ambien CR, woke up three times, could not go back to sleep after 6:00 AM, took 10 mg of regular Ambien at 6:30, and got up two hours later. Two hours on 10 mg of Ambien. Most people get eight hours. Even I usually get three to four hours on that dosage. Cymbalta definitely affected my sleep both nights. Hopefully tonight will be better. My sleep problem is bad enough already!
Monday, October 22, 2012
Thrust In Your Sickle
When I have not blogged in a while, it usually means things are really good or really bad. Things are not good.
Let us discuss death. Just entertain the idea. It sounds so good. The problem is that there is no fool-proof method. Chances are good that I would end up hurt but not dead. I already know that situation sucks.
I contacted my doctor and nurse last Wednesday to let them know that I have suicidal ideations, as my shrink advised. On Friday, Alyssa emailed to say that she was sick with pneumonia and hoped Dr. Rick had contacted me, that she hoped to be well enough to return to work Monday. Basically I told her whatever. What if you felt that way every day and had to work anyway? Maybe it was not fair, but I am having trouble feeling sympathy for normal people who get sick. They are sick temporarily, and there is no way it is as painful as my everyday pain. Whatever, I have anger issues lately. I blame it on the grieving process. It has been a year, and I have felt denial, bargaining, depression, and sometimes even acceptance, but this is the first time I have felt anger.
Alyssa called later on Friday and left me a message that she had sent several messages to Dr. Rick, and that she understands that I am dealing with a lot. Dr. Rick called and said to increase my tramadol to 50 mg (it already is! he seemed to think 25 mg), and he offered Cymbalta. Basically he said have a good weekend.
Ugh, yes, he called right before he left for the day. And I missed his message by minutes. Figures! Today Alyssa followed up with me. She said how she is worried about me, that I am not doing well, that she and Dr. Rick discuss me. I wanted to say That is nice, but it does not change anything for me. Alyssa tried to figure out how serious I am about dying and if I have a plan. And she called in my Cymbalta prescription (which turned out to be unreasonably expensive, just like Ambien CR).
Alyssa said that if the pain is bad enough to die, I should go to an ER. They could admit me and get the pain and "mood" under control. What do I look like, a sucker? An ER is not going to help unless you have a bone sticking out somewhere. Besides, pain and psych admissions sound like a great way to ruin a career. Maybe I would consider it for pain--I had never thought of that before. Hospitals are for really sick people, not me. But I think maybe I am really sick. However, I would never go to an ER if I wanted to kill myself. Duh, suicidal people do not want help. Going to an ER saying that you want to kill yourself is probably attention-seeking behavior.
Ah, here is something different: for the last two days, my left ear sounds crackly when my eustachian tubes open. (Yes, I know when my eustachian tubes open.. because I am that nerdy.) But it does not hurt. I suppose that I have fluid in my middle ear, but it is not infected. I do not think it is affecting the rest of my health, because my pain has actually been better the last four days. It is down to 7-8 a lot of the time. Right, that is a reduction!
Seriously, the thought of tomorrow is too much sometimes.
Let us discuss death. Just entertain the idea. It sounds so good. The problem is that there is no fool-proof method. Chances are good that I would end up hurt but not dead. I already know that situation sucks.
I contacted my doctor and nurse last Wednesday to let them know that I have suicidal ideations, as my shrink advised. On Friday, Alyssa emailed to say that she was sick with pneumonia and hoped Dr. Rick had contacted me, that she hoped to be well enough to return to work Monday. Basically I told her whatever. What if you felt that way every day and had to work anyway? Maybe it was not fair, but I am having trouble feeling sympathy for normal people who get sick. They are sick temporarily, and there is no way it is as painful as my everyday pain. Whatever, I have anger issues lately. I blame it on the grieving process. It has been a year, and I have felt denial, bargaining, depression, and sometimes even acceptance, but this is the first time I have felt anger.
Alyssa called later on Friday and left me a message that she had sent several messages to Dr. Rick, and that she understands that I am dealing with a lot. Dr. Rick called and said to increase my tramadol to 50 mg (it already is! he seemed to think 25 mg), and he offered Cymbalta. Basically he said have a good weekend.
Ugh, yes, he called right before he left for the day. And I missed his message by minutes. Figures! Today Alyssa followed up with me. She said how she is worried about me, that I am not doing well, that she and Dr. Rick discuss me. I wanted to say That is nice, but it does not change anything for me. Alyssa tried to figure out how serious I am about dying and if I have a plan. And she called in my Cymbalta prescription (which turned out to be unreasonably expensive, just like Ambien CR).
Alyssa said that if the pain is bad enough to die, I should go to an ER. They could admit me and get the pain and "mood" under control. What do I look like, a sucker? An ER is not going to help unless you have a bone sticking out somewhere. Besides, pain and psych admissions sound like a great way to ruin a career. Maybe I would consider it for pain--I had never thought of that before. Hospitals are for really sick people, not me. But I think maybe I am really sick. However, I would never go to an ER if I wanted to kill myself. Duh, suicidal people do not want help. Going to an ER saying that you want to kill yourself is probably attention-seeking behavior.
Ah, here is something different: for the last two days, my left ear sounds crackly when my eustachian tubes open. (Yes, I know when my eustachian tubes open.. because I am that nerdy.) But it does not hurt. I suppose that I have fluid in my middle ear, but it is not infected. I do not think it is affecting the rest of my health, because my pain has actually been better the last four days. It is down to 7-8 a lot of the time. Right, that is a reduction!
Seriously, the thought of tomorrow is too much sometimes.
Friday, March 30, 2012
Great MS Clinic Visit!
I had a great visit at the MS Clinic! I saw Dr. Andy, sadly for the last time. His fellowship is over, and he has accepted a faculty position at a different teaching hospital. I will miss him!
Dr. Andy went through the usual evaluation, which includes checking my strength. He was amazed at how much I have improved. I guess all that PT helped. Maybe the gazillion supplements I take? I think it is mostly up to the Lord, though. He giveth and taketh away. At any rate, Dr. Andy and I celebrated my increased strength together.
He was also amazed at how much my walking has improved. I feel like the last three days have been much better in general; if he had seen me a week ago, things would have been different. Still, I am generally on an upward trend, and I cannot complain.
I liked my new nurse, Ricki, who is filling in for Alyssa's maternity leave. She had her baby on Monday. I was excited when she said that Alyssa had been asking about me, that she wanted to visit. She had an appointment for her older daughter in a nearby building, and she was planning to visit the neurology department to see her friends and look for me. I found her in the infusion room when I went there to get my vitals checked (which were 121/84 and 97--boo). Alyssa bent down to hug me, and I got to see her sweet, wee baby. So cute, and so much hair! And so tiny. I did not get to hold her--Ricki and the other nurses monopolized her. Darn.
And I did great on the 25-foot walk (like 4 seconds), vision "test" (20/20), and fine motor test (about 14 seconds). All of those scores are awesome. So I left the clinic feeling great.
Oh, and Ricki went over the injection procedure with me, since I have had more pain lately. Alyssa had contacted Avonex to see if they had any input. They did, and Ricki also had input, from her experience. She taught me a different way to find a site--it is a much smaller area than what Alyssa had taught me. And she gave me a typed copy of the tips, which was helpful. She advised me to stay away from side-thigh injections, that it is harder to reach the muscle. Good, because those tend to hurt more! I can just use the fronts of my thighs. She told me to check the tip of the needle to see if it has liquid. If the medication touches my skin, it will burn. Hm. I wonder if that happened to me before. And she said to do the shot quickly, like a dart. Eh? No. I will try to do it quickly, but I am afraid I will hit the fingers of my other hand if I jab it in like a dart. My other hand would, of course, be stretch the skin--very important so that the needle can get down into the muscle.
My shot this evening went great! It hardly hurt at all.
This afternoon, I bought paint. Lots of paint. Some friends are coming over to help me pain the whole darn house. Almost. The kitchen, living/dining, entrance, halls, stairs, and bathrooms. I will do the bedrooms another time. One friend and I are planning to pain a bit tomorrow morning but mostly on Wednesday, when other people come to help.
Sensory:
Cognitive:
-Processing: 1, had some trouble following directions at the clinic
-Memory: 0
-Attention: 1
-Confusion: 0
General:
-Fatigue: 2
-Balance: 0
Dr. Andy went through the usual evaluation, which includes checking my strength. He was amazed at how much I have improved. I guess all that PT helped. Maybe the gazillion supplements I take? I think it is mostly up to the Lord, though. He giveth and taketh away. At any rate, Dr. Andy and I celebrated my increased strength together.
He was also amazed at how much my walking has improved. I feel like the last three days have been much better in general; if he had seen me a week ago, things would have been different. Still, I am generally on an upward trend, and I cannot complain.
I liked my new nurse, Ricki, who is filling in for Alyssa's maternity leave. She had her baby on Monday. I was excited when she said that Alyssa had been asking about me, that she wanted to visit. She had an appointment for her older daughter in a nearby building, and she was planning to visit the neurology department to see her friends and look for me. I found her in the infusion room when I went there to get my vitals checked (which were 121/84 and 97--boo). Alyssa bent down to hug me, and I got to see her sweet, wee baby. So cute, and so much hair! And so tiny. I did not get to hold her--Ricki and the other nurses monopolized her. Darn.
And I did great on the 25-foot walk (like 4 seconds), vision "test" (20/20), and fine motor test (about 14 seconds). All of those scores are awesome. So I left the clinic feeling great.
Oh, and Ricki went over the injection procedure with me, since I have had more pain lately. Alyssa had contacted Avonex to see if they had any input. They did, and Ricki also had input, from her experience. She taught me a different way to find a site--it is a much smaller area than what Alyssa had taught me. And she gave me a typed copy of the tips, which was helpful. She advised me to stay away from side-thigh injections, that it is harder to reach the muscle. Good, because those tend to hurt more! I can just use the fronts of my thighs. She told me to check the tip of the needle to see if it has liquid. If the medication touches my skin, it will burn. Hm. I wonder if that happened to me before. And she said to do the shot quickly, like a dart. Eh? No. I will try to do it quickly, but I am afraid I will hit the fingers of my other hand if I jab it in like a dart. My other hand would, of course, be stretch the skin--very important so that the needle can get down into the muscle.
My shot this evening went great! It hardly hurt at all.
This afternoon, I bought paint. Lots of paint. Some friends are coming over to help me pain the whole darn house. Almost. The kitchen, living/dining, entrance, halls, stairs, and bathrooms. I will do the bedrooms another time. One friend and I are planning to pain a bit tomorrow morning but mostly on Wednesday, when other people come to help.
Sensory:
-Pins and needles: 1
-Tingles: 1
-Dysesthetic pain: 5, cold pain in left leg/foot--more in foot
-Paresthesias: 1, some random vibrations in my feet
-Tingles: 1
-Dysesthetic pain: 5, cold pain in left leg/foot--more in foot
-Paresthesias: 1, some random vibrations in my feet
-Numbness: 2
-Vision: 0-1
-Nerve pain: 3
-Hearing: 1
Motor:
-Walking: 1, fine all day, minor difficulty in the evening--got slow and less smooth
-Sore muscles: 6, left shoulder, left quad, as well as my right upper arm and forearm. Wondering if forearm pain was related to blood draw
-Vision: 0-1
-Nerve pain: 3
-Hearing: 1
Motor:
-Walking: 1, fine all day, minor difficulty in the evening--got slow and less smooth
-Sore muscles: 6, left shoulder, left quad, as well as my right upper arm and forearm. Wondering if forearm pain was related to blood draw
-Spasticity: 3
-Weak muscles: 1
-Weak muscles: 1
-Endurance: 2
-Fine motor: 1
Cognitive:
-Processing: 1, had some trouble following directions at the clinic
-Memory: 0
-Attention: 1
-Confusion: 0
General:
-Fatigue: 2
-Balance: 0
-Sleep: 1
-Bladder: 2, medication I am still guessing
-Proprioception: 0
-Swallowing: 1
-A: 2
-B: 0
-Proprioception: 0
-Swallowing: 1
-A: 2
-B: 0
Emotions: I was happy at the clinic visit, and I was happy that I was able to go all day and not get tired until around 7:00 pm! Then I was ready to fall asleep by 9:00. Well, I had a busy day. Busy but good.
Friday, March 23, 2012
Not Getting Worse
I seem to be holding steady. My walking was worse today, but pain and everything else remained constant.
I had a very painful day on Wednesday. And so much fatigue. I was ready for a nap by 10:00. I emailed the clinical study team and spoke with Alyssa, who asked if I want to come in on Monday. Honestly, no, and that was what I told her. At this point, I would decline steroids, so there is no point in going in before my previously-scheduled appointment next Friday. Alyssa asked me to contact them again today (i.e. two days later) to confirm that I really do not want to come in on Monday.
Thursday was overall my best day this week, with not much pain and even less fatigue. But my quads got all spasticitized (tm ;) again.
Today was worse again. Boo. But I still told Alyssa that I do not want to come in. I did want assistance with managing my nerve pain--the burning skin has gotten pretty bad. I was advised to increase my desipramine. Fingers crossed that the dry mouth does not increase with the dose. And fingers crossed that this helps, because sometimes I am ready to tear my skin off.
Sensory:
Cognitive:
-Processing: 1
-Memory: 0
-Attention: 0
-Confusion: 0
General:
-Fatigue: 3
-Balance: 0, not counting in the dark
I had a very painful day on Wednesday. And so much fatigue. I was ready for a nap by 10:00. I emailed the clinical study team and spoke with Alyssa, who asked if I want to come in on Monday. Honestly, no, and that was what I told her. At this point, I would decline steroids, so there is no point in going in before my previously-scheduled appointment next Friday. Alyssa asked me to contact them again today (i.e. two days later) to confirm that I really do not want to come in on Monday.
Thursday was overall my best day this week, with not much pain and even less fatigue. But my quads got all spasticitized (tm ;) again.
Today was worse again. Boo. But I still told Alyssa that I do not want to come in. I did want assistance with managing my nerve pain--the burning skin has gotten pretty bad. I was advised to increase my desipramine. Fingers crossed that the dry mouth does not increase with the dose. And fingers crossed that this helps, because sometimes I am ready to tear my skin off.
Sensory:
-Pins and needles: 3
-Tingles: 1
-Dysesthetic pain: 9
-Paresthesias: 4
-Tingles: 1
-Dysesthetic pain: 9
-Paresthesias: 4
-Numbness: 2
-Vision: 0
-Nerve pain: 6
-Hearing: 1
Motor:
-Walking: 6, slow, sometimes needing to hold on to someone. Feeling like my legs would buckle--weakness. But okay for short distances.
-Sore muscles: 4, quads mostly
-Vision: 0
-Nerve pain: 6
-Hearing: 1
Motor:
-Walking: 6, slow, sometimes needing to hold on to someone. Feeling like my legs would buckle--weakness. But okay for short distances.
-Sore muscles: 4, quads mostly
-Spasticity: 4, quads
-Weak muscles: 6
-Weak muscles: 6
-Endurance: 6
-Fine motor: 0
Cognitive:
-Processing: 1
-Memory: 0
-Attention: 0
-Confusion: 0
General:
-Fatigue: 3
-Balance: 0, not counting in the dark
-Vertigo: 0
-Sleep: 6, I had to get up super early this morning.. 5:45!
-Bladder: 1, from medication
-Proprioception: 0?
-Swallowing: 0
-A: 0
-B: 0
-Proprioception: 0?
-Swallowing: 0
-A: 0
-B: 0
Emotions: Fine. I had a good day.
Friday, February 3, 2012
Shots and Pain
Today I had my monthly visit at the MS Center. This was a short visit, just an hour with Alyssa--vitals, shot, bloodwork, medication update, vitals, making copies of my log book. I keep a log of the shots I do at home, with pain levels before and after the shot. It is not a big deal.
My blood pressure was 133/80 and pulse 80, but I was chatting with Alyssa at the time. Then it was 120/62 and pulse 75. That is still higher than normal for me, but that is what it has been the last two months whenever I go to the doctor. I hope it is not really increasing, that I am just nervous to be there.
My vein ran dry after about five tubes of blood, and I still had six or seven more. Then she had trouble getting another vein. Ugh. The needle sticks did not hurt very much, though. I asked Alyssa to print my labs from the fall, which she was kind enough to do. That had my Vitamin D, calcium, etc.
The subcutaneous shot with the daclizumab/placebo STUNG again. Yeowch. I would take the bloodwork over that shot any day.
I did my own shot at home, and it went fine. I remembered to pull the skin taut. It hurt a little, and then it spurted some blood when I took the needle out. That surprised me. I must have nicked a little blood vessel. I put pressure on it, and it was fine.
My mouth had been so dry today. All of my mucous membranes, really, but my mouth was the one that bothered me. I suspect the amitriptyline.
I had a great morning, and an alright afternoon, but the evening has been pretty bad. Severe pain in my butt, legs, and feet. Oh my goodness. So bad. And in my tongue! The pain in my lower body has often been more like electricity than freezing/burning. It is bad either way. Oh, and the pins and needles get in there. The three sensations morph and blend with each other.
One thing that is worrying me a bit is that I seem to have lost the ability to feel full. I eat and eat, and I stop when I realize that I have eaten way more than I typically would. I wonder why I do not feel full. It gets to where my stomach feels huge and I even (grossness warning) reflux up some food, yet I do not feel full! I do not like this at all. I think it has been going on for several days now... maybe since Monday. I seem to recall eating a lot for lunch that day. I really hope this is related to the steroids, not MS. I want it to go away. I also do not think I am as good at tasting things and detecting temperature with my tongue--I am sure that is because of the numbness and pain.
So far my side effects are ok from the shots. I guess. I feel hot, but my temperature is normal. I was very achy for a while, but it got better. That was 30-60 minutes after my IM shot, so probably too early for that to be the reason. I guess I am still achy, now that I am attending to it. And I started feeling really sick around 5:00. That was before I did my IM shot.
Sensory:
My blood pressure was 133/80 and pulse 80, but I was chatting with Alyssa at the time. Then it was 120/62 and pulse 75. That is still higher than normal for me, but that is what it has been the last two months whenever I go to the doctor. I hope it is not really increasing, that I am just nervous to be there.
My vein ran dry after about five tubes of blood, and I still had six or seven more. Then she had trouble getting another vein. Ugh. The needle sticks did not hurt very much, though. I asked Alyssa to print my labs from the fall, which she was kind enough to do. That had my Vitamin D, calcium, etc.
The subcutaneous shot with the daclizumab/placebo STUNG again. Yeowch. I would take the bloodwork over that shot any day.
I did my own shot at home, and it went fine. I remembered to pull the skin taut. It hurt a little, and then it spurted some blood when I took the needle out. That surprised me. I must have nicked a little blood vessel. I put pressure on it, and it was fine.
My mouth had been so dry today. All of my mucous membranes, really, but my mouth was the one that bothered me. I suspect the amitriptyline.
I had a great morning, and an alright afternoon, but the evening has been pretty bad. Severe pain in my butt, legs, and feet. Oh my goodness. So bad. And in my tongue! The pain in my lower body has often been more like electricity than freezing/burning. It is bad either way. Oh, and the pins and needles get in there. The three sensations morph and blend with each other.
One thing that is worrying me a bit is that I seem to have lost the ability to feel full. I eat and eat, and I stop when I realize that I have eaten way more than I typically would. I wonder why I do not feel full. It gets to where my stomach feels huge and I even (grossness warning) reflux up some food, yet I do not feel full! I do not like this at all. I think it has been going on for several days now... maybe since Monday. I seem to recall eating a lot for lunch that day. I really hope this is related to the steroids, not MS. I want it to go away. I also do not think I am as good at tasting things and detecting temperature with my tongue--I am sure that is because of the numbness and pain.
So far my side effects are ok from the shots. I guess. I feel hot, but my temperature is normal. I was very achy for a while, but it got better. That was 30-60 minutes after my IM shot, so probably too early for that to be the reason. I guess I am still achy, now that I am attending to it. And I started feeling really sick around 5:00. That was before I did my IM shot.
Sensory:
-Pins and needles: 8
-Tingles: 1
-Dysesthetic pain: 9
-Paresthesias: 9, the electricity
-Tingles: 1
-Dysesthetic pain: 9
-Paresthesias: 9, the electricity
-Numbness: 3
-Vision: 4, it was a lot better this morning, got worse again in the late afternoon. I am very hopeful for tomorrow.
-Nerve pain: 7
-Hearing: 1
Motor:
-Walking: 1
-Sore muscles: 7, my upper arm really hurts where I had my subcu shot. And my legs, with the spasticity. But I had little pain this morning.
-Fine motor: 2
-Weak muscles: 5
-Spasticity: 6
Cognitive:
-Processing: 2
-Memory: 1
-Attention: 2
-Confusion: 2
General:
-Fatigue: 6, but I would probably say 3/4 until early afternoon. Later in the afternoon and all evening it has been more like 7/8.
-Balance: 2
-Sleep: 0
-Bladder: 1
-Proprioception: 1
-Swallowing: 0
-A: 2
-B: 0
-Vision: 4, it was a lot better this morning, got worse again in the late afternoon. I am very hopeful for tomorrow.
-Nerve pain: 7
-Hearing: 1
Motor:
-Walking: 1
-Sore muscles: 7, my upper arm really hurts where I had my subcu shot. And my legs, with the spasticity. But I had little pain this morning.
-Fine motor: 2
-Weak muscles: 5
-Spasticity: 6
Cognitive:
-Processing: 2
-Memory: 1
-Attention: 2
-Confusion: 2
General:
-Fatigue: 6, but I would probably say 3/4 until early afternoon. Later in the afternoon and all evening it has been more like 7/8.
-Balance: 2
-Sleep: 0
-Bladder: 1
-Proprioception: 1
-Swallowing: 0
-A: 2
-B: 0
Emotions: Nothing to talk about. Maybe a little irritable.
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