The Way it is.
I think I have finally figured our how others (you) can partially, understand my experience with M.S.
If you do the following you may approximate How I live my day.
Prepare For walking 1. Attach a phone book (a big one) to the back of your left thigh just behind your knee.
2. Attach a ruler or other stiff straight object to your straight left leg.
3. Attach a deck of cards to the ball of your left foot. On the bottom of that put a piece of Velcro, a magnet, or gum, (anything that requires you to pull hard on your foot after each step.
4. Tie a string on the back of your belt. Loop the other end over your left toe so that each time you take a step the string pulls your toe back toward the floor.
5. This next one will take a little imagination. Put a hat on your head with metal rings floating around it like you might see in the drawing of electrons around an atom. Each ring has a weight on it which moves when your head tilts swinging the weight toward the lowest edge on the ring. The faster you move the more often their positions change. You must stand tall and keep all weights distributed evenly in order not to be thrown off balance. If you do get off balance don’t worry your brain kicks in quickly and will jet your arms out to each side. No worries your friend doesn’t need his voice. He uses his hands to work.
Everyone knows your situation they’ll understand. F.Y.I. I forgot to mention. No one else can see all your unique attachments.
Now that you are ready to be me put on your best smile, charge right in and watch for those painted lines! (They are much thicker than they appear)!
A few suggestions in general:
~ do not forget to stop at every bathroom in every building. If that is too in convenient, never cough or sneeze, or drink.
~ write down anything you want to remember & where the note is.
~ When asked a question feel free to say, “let me think about that; before you answer.
~ When reading, give yourself plenty of time & use a book mark to guide you eyes.
~ When key boarding remember to double check everything since you often hit caps lock instead of shift and spell checker doesn’t care. Soooo. Once again leave lots of time. Also take your time so your jumpy, spastic fingers don’t send you off to another application.
~ The key word in all cases is time. Count on living a long time you’ll need it!
If all this sounds overwhelming I apologize. I forgot all I need to do is get out of bed.
Wednesday, December 15, 2010
Thursday, September 9, 2010
Sept. 5 2010 Symptom description for M.S. blog
Like many items in regard to this blog I intended to do this piece long ago.
There are a number of symptoms that have come and gone over the years which I will blog later. Now my focus is the present for there are changes in abilities I am noticing day to day.
Starting with my head and working down.
- cognition – I used to be quite good at comparison analysis. (Scheduling etc.). I could just look at several schedules of 3 teachers and knowing the times & dates we needed arranged I could easily and quite quickly draw out a schedule for a week. Once drawn out any unforeseen clashes were obvious to me. That skill is all but gone. I ‘m only able to do the task now if I use small note papers I can move around and reposition over and over. Even with that. What would have taken me 10 to 20 minutes is now several hours to complete. The problem is holding on to one thought while developing, analyzing (possibilities) & comparing it to another, or several others. I just don’t have the cognitive sticky note power I used to have. Mentally I have become a one trick pony; A SLOW one trick pony. {the skill is slow but not gone!}
- This could be the probable cause of my frustration at the times I am interrupted when I am speaking, listening, or thinking because the thought just drops. It is completely gone and I can’t recall it. I must start over at the point just prior to me speaking. And that does not always happen. It is similar to loosing your train of thought except now it happens more often/easily when there are distractions & /or interruptions. This comparison analysis glitch makes the decision making process slow and frustrating (it is a good thing I have my favorite color memorized)!
Recently I had an experience that got me thinking that the currently unencumbered parts of my brain are doing good things. I was resting and had a lucid dream. (That’s when you are aware that you are dreaming). I was doing a comparative analysis in my dream & doing quite well. It was a new task I was not familiar with and suddenly I thought wow! I can’t do that when I am awake. And I woke up.
That was encouraging to me. I thought maybe if I could learn to think in subconscious mode I could do other things that are now kind of slow. It also made me wonder if that skill has a specific home in my brain that is glitchy but that other parts can mimic & take over the job.
- One other cognitive glitch I call an auditory processing delay. It first occurred early on at the beginning of my first discernible relapse. I will describe it first;
I was passing a room with several teachers in it. I heard the sounds “owrd, word. rodw, word, word” just scrambled sounds. Then “Mrs. Walker” 3 steps later I heard clearly; as if they were repeating it, “Watch out for that” and I remembered the Mrs. Walker. It was a typical thing for a certain teacher friend to say. The experience was spooky and I have not had a similar experience that was so distinctive. I do however have problems when a person talks real fast and seldom breathes. I am discerning the words but the meaning’s not usually understood for a few moments. Once again if I don’t stay focused on what I heard & then get distracted, the meaning is lost.
Below my head I could just say left side but that sounds like paralysis. So let’s say weak, w/ slow responses and in accurate movements. My hand and fingers are clumsy and not entirely reliable. Keyboarding requires a lot of backspace and delete activity. Luckily my spell checker is good.
My left leg is weaker than before but strong enough to keep me walking. My challenge is not to go so fast that my delayed action leg can’t keep me balanced. The spasticity in that leg, I call them ‘tugs’ starts in the middle of my rump muscle, goes down the center back of my thigh, through the center of my calf, under my heel & foot and to all my toes but pinky & big toe. There are other tugs that go down both my inner & outer muscles and the left side of my lower back but they are not so stiff. That main tug makes my gait (style of walking) jerky and fatiguing. It also holds my foot in an almost constantly pointed position again messing up my gait.(and unintentionally kicking unsuspecting objects/people.
I had another tug that is gone now. The placement is hard to describe but it pulled at my leg so that it swung out to the side when I stepped forward. My need for balance & making room for the pointed foot also encouraged the swing out since my knee didn’t flex much at all. I walked like a pirate but I had both legs. I began to concentrate on bending my leg while lifting my leg higher so my toe wouldn’t catch. I didn’t trip or swing any more but the tug pulled my leg down with a stomp with every step. Now I had a new gait. The several anti spasticity med.s had done nothing to help. After I had been on infusion therapy for 3 infusions (Tysabri) I began to feel some lessening of all my tugs. It became easier to walk w/o the swinging gait. The stomp is still with me but easier to control. I do best when I take my walking practice seriously and do my evening walk. I go slowly thinking about my movements and keeping them controlled. I can go more quickly if I use my cane. But I see more benefit from walking slowly & thoughtfully. I take my cane with me for dogs & teeters that turn to totters but I don’t actively rely on it.
Like many items in regard to this blog I intended to do this piece long ago.
There are a number of symptoms that have come and gone over the years which I will blog later. Now my focus is the present for there are changes in abilities I am noticing day to day.
Starting with my head and working down.
- cognition – I used to be quite good at comparison analysis. (Scheduling etc.). I could just look at several schedules of 3 teachers and knowing the times & dates we needed arranged I could easily and quite quickly draw out a schedule for a week. Once drawn out any unforeseen clashes were obvious to me. That skill is all but gone. I ‘m only able to do the task now if I use small note papers I can move around and reposition over and over. Even with that. What would have taken me 10 to 20 minutes is now several hours to complete. The problem is holding on to one thought while developing, analyzing (possibilities) & comparing it to another, or several others. I just don’t have the cognitive sticky note power I used to have. Mentally I have become a one trick pony; A SLOW one trick pony. {the skill is slow but not gone!}
- This could be the probable cause of my frustration at the times I am interrupted when I am speaking, listening, or thinking because the thought just drops. It is completely gone and I can’t recall it. I must start over at the point just prior to me speaking. And that does not always happen. It is similar to loosing your train of thought except now it happens more often/easily when there are distractions & /or interruptions. This comparison analysis glitch makes the decision making process slow and frustrating (it is a good thing I have my favorite color memorized)!
Recently I had an experience that got me thinking that the currently unencumbered parts of my brain are doing good things. I was resting and had a lucid dream. (That’s when you are aware that you are dreaming). I was doing a comparative analysis in my dream & doing quite well. It was a new task I was not familiar with and suddenly I thought wow! I can’t do that when I am awake. And I woke up.
That was encouraging to me. I thought maybe if I could learn to think in subconscious mode I could do other things that are now kind of slow. It also made me wonder if that skill has a specific home in my brain that is glitchy but that other parts can mimic & take over the job.
- One other cognitive glitch I call an auditory processing delay. It first occurred early on at the beginning of my first discernible relapse. I will describe it first;
I was passing a room with several teachers in it. I heard the sounds “owrd, word. rodw, word, word” just scrambled sounds. Then “Mrs. Walker” 3 steps later I heard clearly; as if they were repeating it, “Watch out for that” and I remembered the Mrs. Walker. It was a typical thing for a certain teacher friend to say. The experience was spooky and I have not had a similar experience that was so distinctive. I do however have problems when a person talks real fast and seldom breathes. I am discerning the words but the meaning’s not usually understood for a few moments. Once again if I don’t stay focused on what I heard & then get distracted, the meaning is lost.
Below my head I could just say left side but that sounds like paralysis. So let’s say weak, w/ slow responses and in accurate movements. My hand and fingers are clumsy and not entirely reliable. Keyboarding requires a lot of backspace and delete activity. Luckily my spell checker is good.
My left leg is weaker than before but strong enough to keep me walking. My challenge is not to go so fast that my delayed action leg can’t keep me balanced. The spasticity in that leg, I call them ‘tugs’ starts in the middle of my rump muscle, goes down the center back of my thigh, through the center of my calf, under my heel & foot and to all my toes but pinky & big toe. There are other tugs that go down both my inner & outer muscles and the left side of my lower back but they are not so stiff. That main tug makes my gait (style of walking) jerky and fatiguing. It also holds my foot in an almost constantly pointed position again messing up my gait.(and unintentionally kicking unsuspecting objects/people.
I had another tug that is gone now. The placement is hard to describe but it pulled at my leg so that it swung out to the side when I stepped forward. My need for balance & making room for the pointed foot also encouraged the swing out since my knee didn’t flex much at all. I walked like a pirate but I had both legs. I began to concentrate on bending my leg while lifting my leg higher so my toe wouldn’t catch. I didn’t trip or swing any more but the tug pulled my leg down with a stomp with every step. Now I had a new gait. The several anti spasticity med.s had done nothing to help. After I had been on infusion therapy for 3 infusions (Tysabri) I began to feel some lessening of all my tugs. It became easier to walk w/o the swinging gait. The stomp is still with me but easier to control. I do best when I take my walking practice seriously and do my evening walk. I go slowly thinking about my movements and keeping them controlled. I can go more quickly if I use my cane. But I see more benefit from walking slowly & thoughtfully. I take my cane with me for dogs & teeters that turn to totters but I don’t actively rely on it.
Thursday, March 5, 2009
Thank Goodness we get new days every morning
3-5-09 I just reread the drama entry I last posted. It all seems so silly and over done now weeks later. At the time I can tell you it was very real and very painful. Luckily my friend Linda came over and let me cry and moan and reminded me of the good things& people around me and that I would feel much better after my shot. I did. It took a couple of days to feel in control again, but I did and I do.And I feel better each week. I am exercising more and had a couple positive Dr.s visits that have helped. I had also been concerned about diabetes. I had a glucose tolerance test that said I had provisional diabetes 200 final sugar level at test. My next Dr. said that test can give false positives and had me get an A-1-C test. To be safe from serious blood sugar caused problems your # needs to be under 7. A # of 4 to 6 is considered healthy. Mine was (5.8) barely healthy is more than barely scarey to me! Serious anti-sugar, quick-carbs, and slothy living will be changing.NOW!!! I get to visit with my sister Lynne for a whole week 3-15 thru 3-21!! That has kept me happy on the few grey moments I do get.
3-5-09 a long overdue post>>>>
1-20-09 Stressed out
I feel like 2 people today or at least 2 different wills,(needs).
Part of me PRT1 desperately wants to take action and carry through with my plans in preparing to leave Kent. The other part wants me to wait until I have had my shot tonight and my mental/ emotional state is more stable. 1 doesn't want to wait because we know nothing will change if we do and we will be trapped here again. 2 thinks things will get better. 1 doesn't believe it and is getting more anxious all the time. 1 recognizes this feeling and wants to get out, step off the planet. 2 knows that can't happen because we promised Crystal. And thinks it would hurt too many other people who don't "get it". 2 always wins this point. But 1 is so very tired & frustrated it seems all we have ever done is forgive, distract ourselves, and wait for more of the same. It is very confusing. We can't get anything done at home because that distracts us from the dispare which drives us to what should be done. Not doing anything is terrifying. The entire inner quarrel is physically, mentally and emotionally fatiguing. I disparately need to talk to someone. But it can't be just anyone. I need someone I can trust to encourage me in the right direction and still give me hope and also be able to forget all this when things get resolved. Every move I make to help myself is one that could back fire. I am walking an emotional mine field. No matter what I do Kent will still come home tonight, my feelings will be no different and once again we'll (1& 2) play stuff it and smile. He wouldn't talk to me yesterday, why would he tonight? There is a constant scream of futility blazing in my brain. Yes, Ive prayed. The relief is short lived and just supports 1's idea that it is all useless anyway. We're caught in a loop. We've deceided hell is this kind of loop. Ever trying and never seeing any change. Something different has got to be done. As sure as 1 is about leaving Kent we are also afraid,very afraid. We know not to play' what if.' Still my mind shifts to..consequences... it is possible that....
I just want to sleep. Sleep and float up to Christ. I don't want to ache any more.I don't want to be sad any more. I DON'T want m.s. any more. O.K. I admit it. I'm not so strong. My brain & mind won't listen to me any more. I have almost no more influence on action producing direct thought. My body is also unwilling to respond. Beam me up please, jsut beam me up.
Some how after my shot tonight, I still have to take action.But I don't know how.And I am unsure of the best action to take. This loops is making me physically /emotionally weak & nauseated.
It really maddens me that the only time I feel enough pain to want to do something is when I am having a glitch with my med.s and that means no relief from the pain (emotional) But when the pain is gone my thoughts feel less justified and so I do nothing... at the time I am emotionally strongest. The things that cause or caused the pain are still there but I am strong enough to ignore, rationalize, excuse or forgive them. Still, they hurt even if I do.And when the med.s are gone (worn off) all memories, events, words,& wounds return as if new again.
I really don't want to be a bother. I just can't deal with this relationship,& M.S. with no safety net. I can't jump this ship, but riding it is making me continually sick. I'm no good to anybody.
1-20-09 Stressed out
I feel like 2 people today or at least 2 different wills,(needs).
Part of me PRT1 desperately wants to take action and carry through with my plans in preparing to leave Kent. The other part wants me to wait until I have had my shot tonight and my mental/ emotional state is more stable. 1 doesn't want to wait because we know nothing will change if we do and we will be trapped here again. 2 thinks things will get better. 1 doesn't believe it and is getting more anxious all the time. 1 recognizes this feeling and wants to get out, step off the planet. 2 knows that can't happen because we promised Crystal. And thinks it would hurt too many other people who don't "get it". 2 always wins this point. But 1 is so very tired & frustrated it seems all we have ever done is forgive, distract ourselves, and wait for more of the same. It is very confusing. We can't get anything done at home because that distracts us from the dispare which drives us to what should be done. Not doing anything is terrifying. The entire inner quarrel is physically, mentally and emotionally fatiguing. I disparately need to talk to someone. But it can't be just anyone. I need someone I can trust to encourage me in the right direction and still give me hope and also be able to forget all this when things get resolved. Every move I make to help myself is one that could back fire. I am walking an emotional mine field. No matter what I do Kent will still come home tonight, my feelings will be no different and once again we'll (1& 2) play stuff it and smile. He wouldn't talk to me yesterday, why would he tonight? There is a constant scream of futility blazing in my brain. Yes, Ive prayed. The relief is short lived and just supports 1's idea that it is all useless anyway. We're caught in a loop. We've deceided hell is this kind of loop. Ever trying and never seeing any change. Something different has got to be done. As sure as 1 is about leaving Kent we are also afraid,very afraid. We know not to play' what if.' Still my mind shifts to..consequences... it is possible that....
I just want to sleep. Sleep and float up to Christ. I don't want to ache any more.I don't want to be sad any more. I DON'T want m.s. any more. O.K. I admit it. I'm not so strong. My brain & mind won't listen to me any more. I have almost no more influence on action producing direct thought. My body is also unwilling to respond. Beam me up please, jsut beam me up.
Some how after my shot tonight, I still have to take action.But I don't know how.And I am unsure of the best action to take. This loops is making me physically /emotionally weak & nauseated.
It really maddens me that the only time I feel enough pain to want to do something is when I am having a glitch with my med.s and that means no relief from the pain (emotional) But when the pain is gone my thoughts feel less justified and so I do nothing... at the time I am emotionally strongest. The things that cause or caused the pain are still there but I am strong enough to ignore, rationalize, excuse or forgive them. Still, they hurt even if I do.And when the med.s are gone (worn off) all memories, events, words,& wounds return as if new again.
I really don't want to be a bother. I just can't deal with this relationship,& M.S. with no safety net. I can't jump this ship, but riding it is making me continually sick. I'm no good to anybody.
Wednesday, September 10, 2008
9-10-08 another quick catch up
I Saw Dr. Gibb in Dr. Richens Eye Clinic yesterday I like him. He is the optometrist in the office and I was concerned he might not be very knowledgeable. I was wrong. He did very well and I was impressed. He even discovered that my glasses strength was too high. That is why I instinctively pull my glasses off to read or do other close things. It is also why freeway signs required me to do so much steering of my glasses, a real bother. He said I have perfect nearsighted strength for reading etc.w/o glasses;and unless I wanted to always carry around reading glasses, he would not recommend surgery,He also said vision correct can be done when cataracts were removed and since it is likely I will need that done one day. They will do it then. I liked that idea.I have the new script for my lenses I just need to decide when I am willing to lay out the 2 to 3 hundred dollars for new glasses.
9-10-8 last of Botox Shots
9-10-08 final Set of Botox injections for 9-08
I had what I believe will be my last set of Botox injections for the next 3 months. Dr. Max Root injected my tip toe muscles in the calf of my left leg using the last of the six vials that Altius had approved. There were 4 quick injections and all is done.
I spoke to Stapely Pharmacy to check on the cost and payment for the Botox. They said my insurance had not yet approved it. I was worried since the bill for the six vials is $3,720/ $620.00 per vile. In checking further Botox injections of this kind are considered a medical not a pharmaceutical benefit. In this case my Insurance pays for it as part the bill Dr. Root sends them. So I have no separate bill for the Botox!!!! yea!!!
-Now a catch up. For 9-9-08 I had an appointment with Dr. Rignell today. We discussed the pain in my left hip from last Sept.’s fall in the hall. He thought it may be do to damage to the bursa (lining surrounding those bones) and gave me a few Dr.s to contact to get help with that. For bone health I got a Rx for Evista, for feminine dryness, a Rx for Premerine. My C.T. scan showed evidence problems on my cervix showing a need to see Dr. Rogers, gynecologist. Dr.Rignell agreed to manage my Rx of Cymbalta after I see Dr. Manley in a week or so.
I had what I believe will be my last set of Botox injections for the next 3 months. Dr. Max Root injected my tip toe muscles in the calf of my left leg using the last of the six vials that Altius had approved. There were 4 quick injections and all is done.
I spoke to Stapely Pharmacy to check on the cost and payment for the Botox. They said my insurance had not yet approved it. I was worried since the bill for the six vials is $3,720/ $620.00 per vile. In checking further Botox injections of this kind are considered a medical not a pharmaceutical benefit. In this case my Insurance pays for it as part the bill Dr. Root sends them. So I have no separate bill for the Botox!!!! yea!!!
-Now a catch up. For 9-9-08 I had an appointment with Dr. Rignell today. We discussed the pain in my left hip from last Sept.’s fall in the hall. He thought it may be do to damage to the bursa (lining surrounding those bones) and gave me a few Dr.s to contact to get help with that. For bone health I got a Rx for Evista, for feminine dryness, a Rx for Premerine. My C.T. scan showed evidence problems on my cervix showing a need to see Dr. Rogers, gynecologist. Dr.Rignell agreed to manage my Rx of Cymbalta after I see Dr. Manley in a week or so.
Monday, September 8, 2008
9-8-08 Altius med. nessity fax # 877-554-9137, asked for o.o.p. audit
9-8-08
Got med necessity Fax # for Dr. Becker And she faxed in the request of 2 shots weekly with the letter. I requested Altius to audit my O.O. Pocket spending to the end of the last contract year. 8-8-31. Any $ I have not been sent before, but are owed will be sent to me. I have no idea what the total may be. I think probably$336.00 for my last avonex order of that month. Not real sure though.
When I start with the two injections weekly the cost will double so I will have to keep extra close track of order dates, billings and payments. Easily done! This is the fax # to send in letters of medical necessity: 877-554-9137.
I have an eye appointment this p.m. I will recap latter;-)
Got med necessity Fax # for Dr. Becker And she faxed in the request of 2 shots weekly with the letter. I requested Altius to audit my O.O. Pocket spending to the end of the last contract year. 8-8-31. Any $ I have not been sent before, but are owed will be sent to me. I have no idea what the total may be. I think probably$336.00 for my last avonex order of that month. Not real sure though.
When I start with the two injections weekly the cost will double so I will have to keep extra close track of order dates, billings and payments. Easily done! This is the fax # to send in letters of medical necessity: 877-554-9137.
I have an eye appointment this p.m. I will recap latter;-)
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