Archive for January 2011
I am extremely frustrated today. Have you ever had one of those days where everything that you touch or try to do just doesn’t pan out? Mistakes are made left and right and when you try to correct the mistakes things just get worse? I’m having one of those days and it is only 11:23 a.m.
Something told me, when I first woke up, to play one of my games. Do you recall how I mentioned that when I’m feeling out of sorts or just by instinct; I will play a game that requires logical thinking to see how my cognitive functions are working on any given day? So I woke up feeling out of sorts. What do I mean by out of sorts? It’s difficult to explain but I’ll do my best.
It’s when you first wake up and you try to get dressed, but you stand there staring at your closet because you don’t know what you’re doing. It’s as though you have a brain fog coming in. Then you snap out of it and realize, oh yeah, I need to get out a pair of pants and a top. Then perhaps you go to the bathroom and want to brush your teeth and once again you stand at the sink undecided because you don’t really quite know what you were going to do. Were you going to put on deodorant, comb your hair or what? Then again you snap out of it and realize that you want to brush your teeth. On the other hand, you don’t snap out of it and you do comb your hair and put on deodorant but forget to brush your teeth. You realize later that you hadn’t done so. So back you go and brush your teeth.
Those of you that don’t have cognitive problems, I hear you and you need to shush up. I can hear you saying, “Oh I do that!” If you’ve been reading my blog it’s best that you start running now, because that’s the comment I hate the most. Take what you do and multiply it by a zillion and then multiply the incidents that that occur during the course of your day by a zillion times a day and you get true cognitive problems, not just old age setting in or whatever. So get your running shoes on because I’m coming on my scooter to give you a good face-to-face confrontation on NOT what to say to a person with cognitive problems who is right on the edge of screaming her head off.
Okay, I’m headed back to this morning. I went down to my office and started playing a game called “Snood”. It’s a game where you match up these little snood heads then they drop off. You do this till the board is cleared and then you move up a level. How you match up the little snoods is that one will appear from a queue on the end of a sort of cannon. You line up the cannon and jettison the snood to the color that you want to match to. I’ll give you a link in a minute so that you can see what I’m talking about because I don’t think I’m giving you a good explanation.
On a good day, I’m fair at the game. I’ve been playing it for many years and at one time I beat the game several times. I can no longer do that but it is still fun. Now my performance is fair and I consider that a good day. Today I was rotten at it. I kept shooting off the snoods when I didn’t want to. I also sent the wrong color to the wrong mate. The harder I tried to concentrate the worse I played. It was like a dyslexic thing happening. I kept checking out the queue and not concentrating on the one at the end of my cannon, therefore I would shoot the snood believing I had the right mate, but what I was doing was inadvertently choosing a color from the queue and thinking I had it right, I matched the wrong snoods together. I lost game after game. I couldn’t even get beyond the first level.
This wasn’t good. I didn’t even attempt to play any other games because, quite frankly, I didn’t want any more indicators of how I was probably going to function today. So now what? What do I do on a day like today?
I have to remove myself from making decisions that could hurt me or someone else. So I shouldn’t drive. I can’t play games. My music may help so I will try that. At least this will give me a sense of who I am and that I’m still a thinking person. I could go back to bed. Nope, can’t do that. I own two dogs that need my attention all day long. I don’t want to call any friends to do something because then they will notice how I am today. My husband tells me that it is obvious to other people when I’m not myself. So I don’t want a pity part y here.
I’m not sure what I’ll do to get through today. I know I need to get my braces on. I don’t dare go surfing on the web looking at shops because I will spend money I don’t have. I actually still need to get dressed because I did not snap out of my brain fog this morning and came down in my gown and am still in it at 11:51 a.m. I have nothing on my feet. My hair is standing on end. I haven’t brushed my teeth or put on deodorant, or taken my shower. I’m sort of caught in this loop and I’m trying desperately to break away from it.
So I came here. To make a list of what I need to do and what I can do to get through the day. So here is my list and let’s see if I can get it in order. Thank God for the delete button on the keyboard.
1. I need to take a shower and put on deodorant, brush my teeth, blow dry my hair, and then get dressed. I don’t bother with makeup most days.
2. I need to print this out so I know what I’m doing.
3. I need to tend to the dogs.
4. I need to …………
5. I need to ignore #2 and make it #5 when I’m done typing.
Well it’s a start anyway. Once I get a shower I will begin to feel better I hope.
Ultimately today should be spent with me, myself, and I. It’s safer for others around me. Maybe I’ll go to the movies since everyone I know is not into them. I always go alone anyway. I can’t read because it won’t make much sense and I will have to re-read it later on.
Now, I’m feeling the fatigue attacking me and it’s too early for that. I’m sitting here with my head nodding trying to stay alert. I’m also seeing double these days.
I hate days like today. I really do because it is a day where I can’t even use my technique of enabling myself (turning a negative into a positive) because my day feels very fragmented. I’m not really sure why I’m typing here instead of doing my list. Maybe I’m putting off trying to figure out what to do with the rest of the day.
I truly hate days like today.
P.S. Ooops! I almost forgot. LOL. I promised you a link to Snood.Good thing I preview this thing before I submit it.
You know that I’m always looking at ways to enable myself to get through just the daily tasks of my life with MS. At times, it is so difficult because the fatigue sets in and I’m just too darn tired to even try and capitulate for a few hours and lay down. I’m forever being told to conserve my energy and I’ve learned that this is a smart thing to do. Listen to your body! Of course I frequently ignore this rule but it’s there in the back of my mind so that when I do give in, I feel justified instead of feeling guilty.
What is the most enabling secret that I have? It’s you, all people like you. Then there is even one more important person for me who hangs out deep inside my heart. Right now, a very unique and special person resides in there and will be there until I die. This person has a permanent residence inside my heart and every now and then I sit back and wonder at the miracle of it all. So if you are looking for ways to help yourself, enable yourself, arm yourself; take a look around you and find someone that does work miracles in your life in just knowing them–someone who makes you feel warm and comforted. If there isn’t someone like that, perhaps you’re you need to stop a moment and listen to your heart beat. Is there someone in there trying to get your attention?
We all have someone. Maybe you haven’t recognized yours yet, but you will if you allow yourself to notice. This is enabling yourself.I am posting an additional email sent to me by my special person and will end this blog with that.
I’m working on a friend’s video for the last couple of weeks on and off. I like him so much I’m doing it for free, and though it sometimes stresses me out, it does keep my mind quite occupied from thoughts, feelings and things I wish could disappear forever from my psyche.
I’m a music producer who is still learning the ropes, but here I am, a video amateur being asked to put a video together, mind you, this person is signed with a studio and is subsidized. I’m doing it because I want to do it, because this giving person asked me to make art for him, how can any artist turn that down.
The problem is, since I’m a newbie to video production, I haven’t really gotten the hang of video production software. It makes me feel like I have an IQ of 30 sometimes. Also, learning new things with an old uncooperative cognition, and my super short attention span, it makes it almost impossible to learn, and it creates a extreme amount of frustration, anger, depression, self-doubt, and it adds itself, as it “Fuses” and jumps on to the giant pile of problems, emotions, heartaches and what not – it would look insane in physical form. A junkyard on fire that spreads way beyond the size of the Sahara Desert, it’s more like an infinite sea of trouble. Fighting this each and every minute of every day, that exhausts me greatly, and both physically and mentally. Why does it have to hurt EVERYWHERE?
So let’s add some sugar to this dark, shitty mood of a cake batter, the finished e-mail is your cake Maggie. On the bright side lol, some of you know a very dark bright side, there’s never really bright sunshine or a shining moon, rather it’s usually cloudy with a good chance of showers. But today, the sun has just poked out at me, mind you, it’s 12:16am and it’s pitch black outside. Yes, a virtual bright ray of sunshine, much much healthier for the soul and body. This type of sunshine, although it is truly rare in my life, it gives me hope, and I’m low on stock with hope, so it’s that much more amazing.You could say, this was my good karma back, for wanting to make the best music video I could for my friend and peer.
This person helped me push myself, and even though at times it taxed me so much I had to goto sleeep, it helped me fight the power, my mind that is, it helped me to push myself, and not quit because it’s too tough. In this e-mail and little story of the day for my dearest Magdalena, everybody wins, even those who read your blog.>
Forget about what I said yesterday about it not looking to be so bright a day today because of a early morning dental appointment.
Yipee!!! It’s snowing like heck so I cancelled. Whew!
I’m having a rare decent day today. I actually too an unintentional nap today which did me a world of good. It’s rare that I can sleep for more than a few minutes at a time during the day and that sleep is mostly due to medications. I suddenly nod off for a few seconds or minutes and then I’m back again. It’s a medication form of narcolepsy. I loved going to movies, but I seldom do so now because of this reason. What’s the point of going if I sleep through most of it on and off again. When my husband goes with me (rarely), then he’s always poking me to wake me up which I’m grateful for until about the tenth time when I’m ready to jab him back; irritating to say the least.
But nothing hurts today, no headaches, no spasms, and the list goes on. The only thing I’ve notice today and for the last few days are these strange muscular ticks. It’s in my thighs. I was sitting at the computer and I thought my dog was pawing me. I looked down to shoo him away and I realized he wasn’t the culprit. It was the muscle in my leg jumping around. I could actually watch it dance around. The muscles were at a nightclub without me or maybe I was the host nightclub. So that’s happened on and off the last few days.
Recently, we had a stair lift put in place to make it easier for me to get up to the second floor. We did this right after my surgery in September. We couldn’t pay for it outright, so we placed a down payment on it and thought we could then make monthly payments thereafter. When I learned that it would cost us $400.00 a month not covered by insurance, I told my husband to get rid of it. There is no way I want to pay $400.00 a month when it could go on one of the bills.
This is my gripe today—insurance coverage. We have a perfectly good insurance company that we have paid into for the past 25 years. Now we are learning through the special needs that I have, that neither it nor any other insurance company will pay for things like stair lifts etc. I haven’t dug into exactly what our insurance will cover or not that they consider extraneous expenses but I certainly need to look into it.
The leg braces that I wear now are also not covered. The Disability facility where I was fitted for them told me that insurance companies don’t see these as an absolute necessity. I suppose if I were missing my legs, then perhaps they would cover prosthesis for them, but not braces and these braces ran me well over $1000.00.
So in the last few months, we are out several thousand dollars all on credit cards for medical needs. It’s not even tax deductible since the insurance company doesn’t see it as a medical expense.
What is the rhyme or reason behind the decision makers of insurance companies? I know they have Doctors on board because I worked for one of the insurance companies many years ago. It doesn’t make sense, but I mean to make sense of it. I need to know in advance what pitfalls I may encounter as things become progressively difficult and so do you. So there is research to be done.
Other than today’s gripe, I still am having a fairly decent day and hope it continues till bedtime. One never knows what tomorrow will bring and it doesn’t look bright already. I have a dental visit at 9:30 a.m. I am terrified of dentists. Let’s hope for the best for all of us.
We are well into January and I’m happy for it. The holidays are over and life resumes as normal as can be for a person with Multiple Sclerosis.
I still have the cold my son gave me at Christmas during his visit. For some reason, I am not able to shake it off. I have already been to the Doctor’s once but I think it’s time for a revisit for some more antibiotics.
I have kept busy during these last few days with my music. I am still plugging away at songs with a group of people I’ve met at the Indaba.com website. I have 11 sessions that I’m involved with including four of my own. The sessions are where you invite or get invited to work with other musicians on the composition or the remixing of a song. It’s an online virtual studio and we are all freelancers. These days, this is what keeps me going.
It’s been a difficult few weeks for me with the holidays, this darn cold, and having to wear braces on my legs. It’s also been difficult for a reason that’s been there all along, but you really don’t notice it until it hits you in the face. I mean, you do know that you have a problem with it, but it doesn’t seem so bad half of the time if you are, for the most part, alone during your days. I know I’m probably confusing you right now. I think I’m confusing myself.
For Christmas, I received a wonderful keyboard synthesizer called the Yamaha Motif XS8. It is a keyboard I’ve been drooling over for several years now but prohibitive in price. I gave my husband a music catalog before Christmas and pointed out the keyboard to him. After he wiped off all the drool from the page, he could see the keyboard. I fully expected him to place it on his desk filing system, which is a stack of undetermined size of papers, magazines, bills etc. but instead I saw him peering at the keyboard. He surprised me by telling me he would like to purchase it for me.
Well a bird could have flown in my mouth and the bird could have invited his friends in and still there would have been room enough for a nest, my mouth was hanging so wide open. I don’t know what possessed him to actually tell me he would like to get it for me this time because I had mentioned to him that I would like a new keyboard several times over the years. This year I got lucky.
When the keyboard came in before Christmas, I sat right down in the hallway and proceeded to open it up. It looked like a keyboard with a lot of attitude. It was so heavy, much heavier than the small one that I had. When I plugged it in, I flew away to heaven for a visit. Nothing could have brought me down. I explored all the buttons, sliders and knobs. It has a computer inside of it. I was thrilled and gave it a place of honor in my workroom.
Weeks later, I’m in a love/hate relationship with it. There was a time where I could whip something out of a box and have it together in no time flat without reading the directions, but this keyboard is trying to do me in. I have read and reread the manual. I have gone online. I’m still waiting for an answer on one of the various sites that explains how to get the darn thing talking to my computer.
My old keyboard was so pleasant to work with. All I had to do was put a USB cord in it and connect it to my computer and the two chatted away like they were old friends who hadn’t seen each other for some time. But my Motif is a snob. It wants nothing to do with my computers either the MAC or the PC. This one needs special cords such as MLan or Firewire cords to do the job. I’ve gone out and purchased every little thing it could possibly want to woo it into making nice with the computers, but no—it thinks it’s too good for them.
I have to weave this storyline because it’s the only way I feel better about the whole thing. To make a long story short; ever since I’ve had the darn thing, I’ve not enjoyed one complete day of music as I did with my little ole keyboard. It’s a struggle.
I’m sure you realize where I’m headed with this because I do, particularly as I sit here and write. It’s not the Motif. It’s me. No, I’m not a snob, but I’m not the person who could put things together without thinking as I once was. I can’t retain the information I gather. I print it out then I promptly lose it. Then I find 3 or 4 copies of it lying around not remembering that I had already printed out the same information before. The problem that I have with the Motif is that there are too many ways one can hook it up. But if you hook it up one way, there is a set of directions for it. If you hook it up a different way, there’s a set of directions for that, and on and on. All this information on how to hook it up is dispersed throughout the manual in a nonlinear format. Why can’t they just write a manual for those of us who want to hook it up, say with a USB cord, from start to end?
The manual is written in such a way that it starts out at point one, but goes on and on about: If you want to do it this way, this is how. On the other hand, if you want to do it this way, then do this. Or if you want to do it this way, here are your options. All of this before you even get to point two!
The manual doesn’t read like my mind works. It’s too convoluted and although well written, it runs amok with too much information that is too spread out. You literally have to go to each section and color code the paragraphs. Hey, that’s not a bad idea!
But you see what I’m trying to do again? I’ve caught myself at it! Once again I’m trying to blame all this on something else and not where the blame truly lies. Me. Not that I’m to blame, but I’m the issue not the Motif or the writers of the manual. So I sit here in misery with deadlines on making some music compositions and instead I get so fed up I turn to a game on the computer or browse through some websites. Better yet, I look for a book to buy or something else that will make me feel better and gives me something to look forward to in the mail.
I don’t get my brain these days. Maybe it’s all the pills I take in a day. Maybe it’s the MS. Whatever it is, I wish it would just go away and give me back the old me. Realistically, I know that will never happen. So yes, it’s been a difficult few weeks and I thought it would get better with the arrival of the Motif. But no, it only served to prove to me that my cognitive issues are very real and it saddens my heart.
So while I sit here and continue to try and figure the darn thing out, I find comfort in using the old ways of making music. But I’m not giving in. I’m going to keep at it until it sticks in my head.
I hate to admit it, but I am very confused right now. I received a call from my sister this morning to congratulate me on becoming a grandmother which was news to me. I’ve searched all over the Internet and Facebook and I still don’t know if I’m about to be a grandmother or not. One would think, well why not contact the child and find out first hand. Sadly, I am unable to do this because I am not allowed. I have been shown in no uncertain terms, by various means of blocking me, that I am not a family member any longer. It’s a very long story and private so I will not go into it any further. But this blog is meant to be an honest one and regardless of the fact that inadvertently someone may become offended at things I say, they will be said because they are honest thoughts and fact.
I thought that I would touch base on the design of this website because many have commented on it. If you notice, there is a tree in the foreground of the page. This tree represents me. Then there is a tree in the background with both trees surrounded by water. It’s a lonely picture which I’ve designed and which was inspired by a blog which speaks about a tree and a fish.
The smaller tree in the background is being protected by the larger tree. Both of the trees do not stand up tall and strong. They are both bent from the winds of time and the storms encountered over their lifetimes. Now just because the smaller tree in the background appears small does not mean that it is actually smaller. It’s a matter of perspective. It can be just as big or bigger when set alongside of the tree in front.
The small tree has a lot of hope and dreams a dream of unrealized potential and feels strongly about its role in life. The larger tree also has a lot of hope but dreams of potential that has run amok. This is purely my own interpretation as I laid out the schematics for the page.
The smaller tree speaks of the world at large and is very focused on its role of perhaps doing something to help the world survive and is very offended by the idea that one first has to place one step in front of the other, which I call baby steps, in order to get this accomplished. Very much like a child who insists that they are an adult now and should now be allowed to date or stay up longer that it previously had.
What you have here is a tree trying to protect the tree in the background who doesn’t want to be protected because it considers itself all grown up and worldly. This is true. But knowledge gained in one area can also be knowledge lost in another. When one focuses their mindset on too large a job, and though remarkable and to be commended, one also loses the joy and intimacy of what lies right in front of them. Their refusal to acknowledge this as being erroneous is what makes the tree in front continue to stand there to protect the smaller tree, because the larger tree knows that there is still much the smaller tree needs to learn. The smaller tree will not like this message at all, but that’s okay. It’s not the big tree’s job to have them like what is said. The battered big tree’s only intent is to protect and to take the brunt of the storms as they come along to bring them down to their roots. The big tree will continue to fight the fight in its small world, while the smaller tree will fight the fight in its big world.
What the little tree is not seeing is that it too is standing on an island surrounded by water because it is a product of the big tree. Therefore, regardless of its good intentions and its big dreams, it is still rooted at the base of the big tree and even though it does not acknowledge that it’s standing behind the veil of the big trees branches for protection, the facts are facts.
The smaller tree has distanced itself from the big tree because it wrongly sees the big tree as standing in its way. Somewhere in the core of its roots though, it knows why it’s standing there strongly rooted to the ground. Even though the small tree has distanced itself from the large tree, underneath the ground, the roots of both trees are entwined so deeply that if you fell one tree, the other will suffer because inadvertently both trees will be hurt. One will die; the other will lose strength and will have to survive on its own.
There are no other trees on this island. There is but the one who is true to its role of standing in front, regardless of what the little tree wants or does not want, and will bear the brunt of the storms for the smaller tree. The small tree will be protected at all costs to the larger tree, even if the cost is from the little tree itself.
I know that this story has little to do with MS, but in a way it does. I cannot go into it in detail, but I can say that the little tree has caused great and almost unendurable pain to the larger tree. But the larger tree will not fall and will not be felled because it knows it role in the world, which has nothing to do with saving the world. It has a humble role of standing alone on an island and providing the storms that come along its own branches to be taken down so as to protect the smaller tree.
Both trees belong to their own worlds. Neither tree is right or wrong. What is wrong is when one or the other of the trees sets out with an educated and intentional motive to try and fell the other tree. What the little tree dreams of being able to accomplish becomes inconsequential if it can’t even handle what’s on a tiny little island. The little tree thinks that too many look at themselves at their needs so much that they don’t see the whole picture of the world at large. I believe the little tree has blinded itself to the fact that unless it can take care of its own island and what’s on it, that it leads a life of lies. The little tree doesn’t like that the big tree keeps saying this and the little tree somehow feels shrunken in size by the fact that the big tree won’t budge in its sentiments. But that’s okay. That’s not the little tree’s job. The little tree should be grateful for the fact that regardless of what happens in the big wide world that it wants to help so strongly, that on this little island the big tree is still standing taking the brunt of all storms that comes along, even if the storm comes from the little tree.
If you take a look at the big tree, it doesn’t have much further to fall before it is felled. The little tree should take note of this because once it is felled it will be too late to do or say anything that will soften the fall that the little tree chose to ignore or considered to be inconsequential in the grand scheme of things.
The little tree will eventually outlast the big tree, and will have little trees behind it to protect as well. Perhaps then the little tree will finally understand that its strength lies on not what is on the surface or how big its branches are, but the entwining of the roots beneath the ground that no one else can see which is not anywhere else but on this small island surrounded by water. Meanwhile the big tree leans over and prepares for the inevitable knowing full well that the little tree does not care.
Sad story isn’t it? My life has been cut short and time will tell how short it will be. The stressors in life do not help a person who is battling a disease amongst all the other myriad of medical conditions that is caused as a direct result of having an autoimmune disease. It is not MS that kills us; it is all these other things that will eventually take us to meet our maker. We lead a lonely, sad, and tired life, but we fight like the dickens to do the best we can.
I have one last comment. There can be no true happiness if you can’t look at yourself in the mirror and see reflected at you not the world at large, but at your own image and the immediate surroundings behind you. This is your real world and you’ve left out one important person. That’s truly sad.
I feel like screaming right now. I’ve been up a half hour and it’s now 5:20 a.m. I went to be about 2:50 a.m. Going to bed in the wee hours of the night is normal for me, but to have to get up a few hours later is driving me up a tree. I can’t sleep because I have a cold that has lingered on since Christmas that I can’t seem to kick. I’m on antibiotics and I thought I would see an improvement by now.
I’m sick, I’m tired and I just want to go back to bed but I can’t. Instead I have to take a shower and go teach my knitting group. Thankfully most of them are on their own now. But there is usually one or two that take my undivided attention so that I can’t even get a cup of coffee down. That’s okay because I really care about my ladies.
Tomorrow I have to go back to the surgeon to have him check on the area that he lanced last week. It is still bleeding and oozing. I’m a mess this week and I really feel it. Exhaustion let alone the fatigue of MS are truly getting to me this week.
Right now, what I need is someone else to enable me. Sometimes I just don’t have the strength to fight the battle and just want to cave in and do like most of the people I know that have MS do. Give up the fight, get in a wheelchair and let myself be taken care of. But that would drive me insane. So I guess I just have to suck it up and get out there today and do my thing.
Be patient with me. Remember, that I will always come back to myself in a bit. Sometimes a person just has to say, “I’m not as strong as you make me out to be.” I can be, but not today.
Wow, it’s been five days since I last posted.
I have a scheduled visit with my neurologist this month and the question that is always asked of me is ”any new symptoms or any symptoms bothering you right now?” It’s a ridiculous question!!! It’s a good question for those who have recently been diagnosed with MS, but for someone who has had it for many years now, I repeat–a ridiculous question.
I do have to admit that at times there may be a new symptom that came out of the blue, but for me at this stage of the game, it’s difficult to answer the above question. The reason being that I have so many medical conditions as a result of MS that I can’t provide a list of what is MS or not. It could all be MS in an indirect manner. A better question for me would be “worsening symptoms or troublesome symptoms.”
Here is what I do. I keep a journal. When something happens out of the norm, I write it down. For instance, the other day I was talking while holding a glass in my hand. Suddenly the glass had shattered on the floor. How it got from my hands to the floor is something I don’t even know. So this I put down. I’ve been waking up with bad headaches over the last two weeks now. Yes I write this down as well. Also, over the last few months I go through these periods where I find it difficult to focus my eyes. It’s as though they have a mind of their own. It feels like they are arguing with each other on which way to turn, so they instead ignore each other and run off in different. I have to work hard to bring them back together again, (nystagmus). This I write down. Falling asleep constantly for a few seconds at a time and in unexpected moments and locations (narcolepsy). I have to write this down. The boat is back, vertigo, where the floor seems to be floating and keeps me off balance much like walking on a boat. The list goes on and on.
Every month, I sum up the activities that are planned so that I don’t forget. I have to schedule an upper GI and a chest x-ray. The upper GI is for the surgery that I had a few months ago to make sure everything is still okay. The chest x-ray is because I have this cold since Christmas that won’t let go and it has settled in my chest. I have to make a follow-up appointment with the gastroenterologist for the results of the upper GI, and a follow-up with the Internal Med Doc for the results of the chest x-ray. I have a scheduled appointment with my Psychologist as well. It’s a typical month for me filled with Doctor visits or tests. Isn’t this fun? Meanwhile, I continue to wear my leg braces and I am actually noticing an improvement of the venous insufficiency symptoms where my legs were swollen. They are still swollen and painful, but not as much.
Now that the dreaded holidays are over, I can get back to living my life without these additional stressors. However, just around the corner are new ones added. It is possible I have to sell the house and relocate to a different state because of my husband’s work. So I have to start looking, over the internet, for possible locations for a new home.
Wow, I just fell asleep! I wonder how long I was out. Okay back to where we were. Oh yes, although I’m not looking forward to this move, I need to make the best of it or fall into a deep hole of depressions, which may happen anyway because I’m very unhappy about all of this. I’m praying for a miracle and we’re investigating every angle in the hopes that we can find a loop hole by which we can stay here.
That’s about the extent of any news around here. My husband and I lead a very quiet life by choice. We don’t have a lot of social interaction with our friends really. we once did, but as my health worsens so does our activity level drop. It bothers me because I was a lot more social before all this. My husband, on the other hand, is quiet and subdued and this doesn’t bother him as much.
My work online with the virtual band “Bianda” continues and I will continue to ask for your help. We produced a song that took five months of work and we launched an MS fundraiser with it. The link will be provided at the end of this blog. It costs 0.99 cents with the entire profits sent directly to the MS Foundation. Please copy the link and post it anywhere and everywhere that you can and then ask your friends to do the same. I want to prove to myself and others that a lot of good can be made to happen over the internet. The band that was formed over this project is a miracle in and of itself and we are already talking about the next album we are going to produce for a different charity.
So a word on keeping active physically and mentally. My mental activities have a lot to do with the internet. I am fortunate to have the gift of music, and I also design knitwear. One can continue to have and educated and productive life via the internet. It is an endless resource of education and activities. For instance, say you like to cook. You can literally spend hours on the internet looking for that perfect recipe to make tonight. Then what happens? Well you have to get in the car and go get the ingredients that you don’t have. So this activity of being on the internet has led to physical activity. Say you want to knit a sweater. Again, you spend a lot of time looking for that sweater pattern. You find it but you don’t have the yarn for it. So here again, you need to go out and get the yarn. I’m talking from a female’s perspective but you men get it.
I went out on Saturday to visit a yarn store where I formerly taught. They were having a huge inventory sale. With this cold, the braces and a recent in-office surgical procedure, I knew that I probably should just stay home and rest. Aw come on guys, you know me better than that! Of course I didn’t stay home. So I drove out there during a mild snow storm uneventfully. When I arrived there were hundreds of cars. I could not believe it! This is a fairly small shop but that’s how you do great advertising and see results, which they did. The shop rented out the store next door for their sale. When I arrived at the door, I could see that the line waiting to get checked out meandered round and round down the aisles of boxes of yarn. I knew it would be a long wait in line, but hey YARN….lots of it!
So I went in and started digging for my gold. There was a lot of bending over to dig through the boxes on the floor. After filling up three bags of yarn, I found the end of the line and leaned up against the wall. I realized then that all the bending had caused my incision to bleed. Oh well, there was nothing I could do about it then and there and of course there was YARN to get checked out! A very nice man standing behind me chatted about holding a place in the line for his wife who was still shopping. He was very kind when he noticed that I had tremors and asked me if I was okay. I told him it was nothing that I simply had MS and this was one of my symptoms. After about twenty minutes in line, I could tell that I was going to be in trouble if something didn’t happen soon, like the people in front of me magically disappearing. I think I had moved forward maybe a foot during this time and this meant losing the wall that was supporting me.
My tremors became more noticeable even to me and I was on my feet and not in my scooter. I began to feel panicky and thought that maybe the best thing to do would be leave my bags and go home. But then I had second thoughts and told myself, hell no! I have just as much right to be here as anyone else, however I can’t do it the way they are doing it. I will just have to intercede on my behalf, and not only that; I taught for this shop, so I knew people in the main store that I could talk to. So I went to the front of the store to where there was a man guarding the door making sure no one absconded without paying for their yarn. I told him I was going next door and would he mind my bags. Having that taken care of. I went to the main shop.
That store was full of people as well, but I made my way up to the cashier’s. They were friends of mine and could see that I was in distress. One of them immediately went back to the store room and came out with a chair. I explained to them that I had my stuff next door and that I needed them to move me to the head of their lines so that I could go home. It wasn’t a problem at all. I expect that even if I had not known them, it would not have presented a problem. So I stuck it out, had to make different arrangements, and came home with YARN!!!
You should go out. This is how you get your physical exercise and through the physical you exercise your mind, because oftentimes you find yourselves in situations where you run into a problem. So what do you do? Do you throw your hands up in despair bemoaning the fact that you are disabled and therefore give up or do you throw your hands up in the air and declare, ” I am disabled so cut me some slack.” I prefer the latter. You have to recognize your limits when you go out, but you also have to take the “enabled” way of handling things when you do find yourself backed into a corner. Simply take the situation, turn it this way and that way, and come up with an alternative. FIGHT! Fight with all your might to fit into the world that is just as rightfully yours as it is the next persons. If you can’t handle things their way, then make your own way.
I came home happy and tired. I was happy with the yarn but tired with pain. Then I had the nasty task of changing my dressings on my wound. But hey, you have to take the good with the bad and then later drift off into whatever happens when you fall into that little hole where sad people find themselves because no matter how hard you fight and no matter how inventive you are, I have to admit to myself and to you, I can’t run away from me and my body. It’s not the body I had before and I miss it and this makes me very sad at times. More often than I care to mention to myself.
But keep trying folks. Just keep trying.
Ugh. I am so sick. My son had a cold that he left behind for me to take on. It’s a shame really. Because while he was here, I babied him and took care of him, and then he gets on a plane! Me? I’m stuck here and sicker than a dog. I had my flu shot but still I get so sick with stuff. I went to the Doctor today and had 101.5 fever. They almost put me back in the hospital but I fought that one. So I’m home armed with more meds, nebulizers and such and I have to go get a chest x-ray tomorrow in case it’s pneumonia. Ugh.
These braces on my legs are driving me wild too. I think I’ll take them off as soon as I get off of here. Then there is supper to be made. Ugh. Why is it that women were born with this thing stamped on their bellies that said, cook, housekeeper, bearer of babies and on and on. Hey guys!!! Don’t you know how much work we do in the course of a day whether we work in the outside world or not?
Oh well. This post is going to end rather quickly in fact in a few more sentences. I just wanted to touch base with you all before I rip these braces off and then collapse on the sofa. Maybe supper will magically get made? Not! Then again, I have somene here who does pinch hit for me every now and then when it comes to meals. It’s called take out.
I’ve got to go. Ugh. Love ya
Well here we are in the New Year! Happy 2011 to all of you and I sincerely hope that you face it with hope and with the belief in possibilities.
So let’s talk about possibilities. I already have a whopper of one. I love where I live and my home of 3 years. Unfortunately, although we knew that it could happen at any time (possibility), we have been recalled back to a state where I wasn’t very happy. This was presented to me the other day and ruined my celebrating the New Year. I know that it sounds trivial and petty, but did you know that moving is the second most traumatic event you can go through outside of a death in the family? It changes everything except your core being.
For the last few days I have had a terrible cold with a sore throat a gift from my visiting son, poor baby. Add to this the ‘moving’ news and then add the launch of the MS Fundraiser. Okay so I have going two negative things and one positive. I have to admit that I have been very focused on the negatives which make me feel disabled and you know I hate that.
I can do something about the cold. Rest, plenty of fluids and blah blah. There is nothing I can do about the move. The MS Launch? Well I had something to do about it, but now that it’s running, it pretty much takes care of itself, at least for my end of things. I think it’s the very quick fluctuations of changes that are having an impact on me as I sit back and watch events happening all around me. One gets used to a solid foundation and then to have it ripped out from underneath you makes you feel unstable again. Yes, I guess it’s the move that truly has me upset although the sore throat doesn’t help but I know this will pass. The move is looming in front of me and there are things to do to facilitate the move which I would rather not do.
My sadness over all of this is the sense of ‘home’ that I’ve longed for my entire life having been brought up in an orphanage. Yes, I know the platitudes of ‘home being where the heart is’ etc. But come on–in the real world, you can listen to all the practical advice from your friends and it goes in one ear and out the other because it’s the heart that hurts. No one is listening to the heart just the physical stuff.
I do want to turn this around emotionally. I’m not quite sure how. Perhaps all the things I need to do will at least distract me from my real issues about this move. Then again, perhaps it will focus me more on the negatives. We will have to see as the weeks roll by. The move must be done by September, so there is a house to sell and another house to buy. Wanting to get off the topic now, I am returning back to “possibilities”.
MS has changed my capabilities in believing in the possibilities. I have to work hard at it whereas before, it was a natural and easy thing for me. You along with me have to realize that with the word “possibilities”, there are good things that may happen and there are bad things. We need to internalize the word. Instead of thinking of it as events that affect us. We need to concentrate on our reactions to these events and form our own reactive possibilities to these. So in internalizing the word “possibilities”, we in turn need to encapsulate it in our minds, transfer it to our hearts, then process it back to our minds and then allow it to show in public.
Here’s what I mean. Okay, so I heard some bad news. It’s in my head now and it hurts me. That’s my heart getting involved. I have to work with the easing of pain in my heart as a reaction to this in order to get it straight in my head. Once I do this, then I can go about tending to business without everyone around me worrying about me because I seem so sad. Yes, they will still know that I am sad, but they will understand that I am dealing with it as best as I can because I’m tending to all the details of the move.
Is this affecting my MS? I really can’t say right now because I already have been on a downhill slide with it these past few weeks. No. I am not calling my doctor because he will put me in the hospital on IV prednisone and I don’t much feel like going back to the hospital when I just got out of it. Putting me in the hospital will also delay the process of my learning how to cope with this, and already there is a small twinkling of hope and ideas that are starting to pop up.
I love my house but it doesn’t love me. It multi-level and we’ve had to put in a very expensive stair lift in order for me to go to bed at night. The first floor of the house is also multi-level. You have to go up and down two or three steps just to go from one room to another. It was an impractical buy in the first place, but my heart overtook my logic when I saw the house and I wanted it no matter what. LOL. So here is a good thing. When we move, I can find a rancher to move into.
I’ve done a lot of good things here for the community and I have been worrying about what will happen to my projects. Surely I can find someone to take over these projects and keep them alive? I hope. I have complained that I don’t have the strength to start over again with instituting these very same projects in another location. Who am I kidding? I thrive on mountains to climb because I know there is a very rewarding summit. I can do this and it has nothing to do with strength or energy. It has everything to do with “I know I can do this because I WILL do this.”
It’s a matter of enabling myself by thinking of myself not as a disabled person, but an enabled person who has to do things differently. I’ve done that here, why not there? It doesn’t matter how old I am, what strength I have, or where I am at in my disease. There are other ways of getting things done if you look for them. So you see in the very act of typing this blog, things are looking up already, because I need to scold myself and tell myself, what is this blog about? Yes, you got it. It’s about enabling ourselves. So I have to practice what I preach by doing what I preach.
Over the next few months, we will see how all this turns out. Meanwhile, please don’t forget about the MS Fundraiser and the link gives you a good idea about how it all came about.
Happy New Year and please sign my guest book.