Strength to Go Out

     I’ve got a dentist appointment today, fun day out amongst the humans. It will take every ounce of energy I have for this. I need to do some research, what happens next? What happens when I can no longer gather enough strength to get to the dentist? I go to the doctors too. I see people there with caregivers, usually a woman, where do they come from? I really don’t want that. It’s really no fun living your life in the what if lane, it’s even worse in the when lane. It’s raining now, that will make it easier! See, when you are having a bad day there is always a chance it will get worse!

Heat Takes It’s Toll

     Heat is not my friend! If I was married to heat we would have divorced years ago, it’s just not a healthy relationship. My issue isn’t that I don’t personally like heat, it’s that it has a horrible impact on me. The first to happen is my vision gets cloudy, like I’m looking through cheese cloth. Next it is a total drain on my energy system, I become listless. Muscle control is next, I’m no longer in control of how my body acts, things like sitting up are affected. I had a confrontation with heat on Friday. I had a doctors appointment on Friday, had to go regardless of the heat. The van isn’t air conditioned, it was a hot one on Friday!  I had all of the aforementioned symptoms, it was a struggle to get my big ass in the house. The switch that heat flips isn’t so easy to turn off, the effects don’t simply revert when I get cool, they last for days. Vision is better, muscle control is returning, energy will be the last thing to return, hopefully. The problem with secondary progressive ms is that things don’t always return to where they were, it’s like my body is constantly playing a game of shoots and ladders, and I’m losing.

Arms Almost as Dead as My Legs

     I think back to when all of this started , I began to prepare myself for the day that I could no longer walk. I thought I had done a good job mentally preparing myself for what sounded like an inevitable future. I’ll tell you something that never crossed my mind, my arms and hands. I honestly never even considered it. Imagine my surprise one day when I was putting on my deodorant and had a hard time holding my arm up. I have prided myself in how I have been able to adjust to the little things, I now put my right arm on the windowsill to apply my deodorant, problem solved. The problem is, like my legs, things started on my right side, then gradually migrated to the left. The right arm on the windowsill was possible because I lifted it there with my right arm, that is getting harder to do. I have begun to drop things with my left hand, not aware they are no longer there. This realization is not a new one, 25 years ago I switched carrying my service weapon from the right side to the left, it got me 3 extra years at work. The problem is I am fresh out of arms. I am trying to prepare myself for what happens when the left side is as dead as the right, it’s somewhat of a hard thing to do. I will do my best, just not sure how much more I have in me?

Back Continues To Be A Problem, To Wheelchair Or Not Wheelchair

Been paying for my pain management docs retirement home. I've had a series of injections, epidural, facet, and rhizotomy. Feels great when I have them, usually lasts a few weeks. We alternate between sides, 2 on the right, 1 on the left, you name it. Happy to have relief, but wouldn't mind if I could get a couple more weeks out of each one.

Energy level at an all time low. Stopped doing a lot of things, just don't have the giddy up anymore. Things like cooking have gotten tough, combination of it hurts to stand for too long, and the fatigue. Have an electric wheelchair out in the shed, is it time to bring it in the house? Thinking it would be better to get a really comfy chair to work from in the kitchen, keep my recliner at command central.

New Bed, and MS Cleaning a Real Chore

Getting a new bed on Wednesday, didn't realize how bad the old one was until I stripped the sheets the other day. Oh I knew it was broken, and it sagged horribly on my side, and it was uncomfortable, but it has a hold in it and a spring is sticking up through! I cleaned the bedroom top to bottom today so that when the delivery dudes come everything is ready to go. Sears had a sale that was so good we almost bought 2! It better be comfortable, I almost killed myself cleaning the room, not that much stamina left in the tank anymore. I miss being able to go all day, get tons of stuff done every time I decided to do so. I hated cleaning up when I could, now I'd like to do it everyday but can't.

Wasted Doctors Visit, Depression and MS, and Prescription For Smoking

So I go to the doctor today, need to get a letter from him explaining I need a higher dose of my nutsy pill than the insurance company will pay for, simple. Nothing is simple anymore, not even getting letters. He's not my primary, so he's not sure what I need, thinks it would be more effective if I call them and raise hell. I know, how about I call HIS office and raise hell about him not sending another letter? I hate doctors.

I need to start a club, one for men stuck at home with nothing to do. Not sure what I'm going to call it, that name's not real catchy, but this rots, big time. I never thought I'd get to this point, I'm talking pre MS thought. I do absolutely nothing, mostly because of the lack of energy, but just as much because I have no direction. The depression smacks me from all sides, it's really depressing, HA! The impending doom feeling has been there forever, now add in it doesn't appear to be impending anymore and ouch! Tell me I don't need that third pill.



I forgot to ask the doctor today, but I'm pretty sure he wants me to start smoking again? I think they even gave me a prescription to start once, just having a problem laying my hands on it right now. 5 years since I smoked a cig or had a drink of any kind, having my doubts if it's worth it or not? Sitting out back smoking at least gave me something to do. Not particularly worried about the health risks, the thing that keeps me away is the cost, damn you tobacco lawsuits!

Perry Hall Alumni Bull Roast, Paying The Price Today, and We Dropped the Ball On the Wife's Birthday

Went to the Perry Hall Alumni bull roast last night, first time for me. We had a few feet of snow, or inches, can't remember which one. Have to admit, was surprised they didn't cancel it, but glad it was on. I saw people I haven't seen in over 30 years, and some of them remembered me! I have to admit, after that many years, to see that many people, and be in the shape I am, was a little tough to do. One on one isn't bad, but to walk into a banquet hall full of people, with a cane, dragging the one leg, far shot from leading the team into the pep rally, but we soldier on.

Let me tell you, the standing, the mingle type walking, in and out of tables, killed me. Oh, and the bathrooms, they were in another part of the county. I didn't want to sit, not seeing anyone, so I kept going. I am paying for it today though. My back is in serious trouble, with or without last night. My legs, let me look, yeah, I still have legs, and they hurt like hell! Fatigue? Forget about it!

The wife's birthday was yesterday, and it was an epic fail on our part, all 3 of us, but mostly mine. Can come up with a ton of excuses, the snow kept me in the house, my back hurt, or my fav, I have MS! Long and the short, the one person in this house that should have had mountains of presents, cards from dignitaries, and even a goat sacrificed, got nothing. I need to figure out how to make it up to her, and show her I am extremely sorry. The kids will help me with whatever I come up, they will be glad to, whether they want to or not.

Biker Insurance, Running To the Bathroom, and I Need a Hobby

I see, hear, and read things that make me chuckle, especially in advertising. I was listening to the radio today, there was one of those non stop auto insurance commercials. This one was for motorcycle insurance, or as they referred to it bike insurance. The company was advertising bike insurance, for bikers, by bikers. I got a picture of these suits, sitting in a conference room, knuckle bumping eat other. I also had a minor guffaw, wondering what real bikers think of the massive infusion of menopausal men using bikes to stay young?

Tell ya something else that makes me laugh. The image of me, running, or my new equivalent of running, trying to make it to the bathroom. I look like those guys that do demolition by running into things, or Quasimodo,going to ring the bells. I am capable of leaving a wide swath of destruction to begin with, put me in double time mode, and look out! I had one of those dashes today, figure I may as well laugh about it. Think I had a micro chip installed at birth, and it activates when I pull onto my street, good times.

Have to figure out how to get out of this recliner? Weighs heavy on my mind that my future holds nothing but sitting, probably, and the fatigue is so bad, I can't go do anything about it, but sit here and wait. Time to suck it up, push it, but what? Where? When, and with who? What do people do during the day, or at night for that matter, when they have a lot of time on their hands? All my friends and family work, they can't play with me. Never thought you could have too much time on your hands, is there no parole from this?

Born Free, Youth Bowling, and Fighting Fatigue

As you can see from the picture, my efforts to capture the feral cats has yet to be successful. You may also notice the total and utter fear I have put into these wild felines. This Siamese mutt, if cats are called that, could hardly sun itself out on our pool deck today he was so scared! I may need to rethink my strategy, looks like what I'm doing isn't working?

The boy has another bowling tournament tomorrow, this one pretty close, at Country Club Lanes. He is in singles, pairs, and team events. I think it's 9 am he has to be there, so I volunteered so the wife can get some much needed sleep. The problem is it won't work. She will get up to make sure we have everything we need, and probably not go back to bed, but the offer is there. The boy needs to move on the adult leagues, he is up against little kids in some of the events, and he aint little! He just wants one last trip t the junior nationals, and they are July.

Was reading some other blogs today, I see fatigue is an issue with a lot of my fellow MSer's, just like it is for me. I truly believe it to be the worst part for me. I have days, combined with the depression, it's tough to get up from bed. I take my nutsy pills and feel better, but yet to find anything for the fatigue. Every
once in a while the fatigue won't be there as bad, it's nice to feel like my body can go out and do things, even if I know better.

The Girl Got Published, I've Got Bob Dole Hand, and No Energy To Do Housework

I don't know about any if you have famous authors living in your house, but we do, it's just the way we roll. The girl wrote a book when she was 14 or so, probably the only thing she wrote that the father didn't die in the first few minutes! She finally decided to get it published, it's called, "Her Hair",and we are all excited about it. She's excited because, well, because she she got her book published. I'm excited because when she's famous, she can buy me stuff! She has others, one will be submitted to a competition, I'll let you know.

I'm getting the wife to sew the right pocket of all my pants shut, it is officially useless to me. If I am able to get something in the right pocket, I sure can't get it out. I was wearing a pair of my fat guy shorts today, had my wallet in my right pocket. My wallet is huge, has my badge, and wad of cash I lug around. I couldn't get my right hand into the pocket. My hand isn't swollen and won't fit, I just couldn't find the opening, or manipulate the wallet out. I need to start carrying a pen in my right hand like Bob Dole, problem is I'd drop the pen. I always liked my right hand, I'm going to miss it.

I have tons of projects that need to be done, don't have the energy to even get started. It's time to get started with painting, refinishing floors, all kinds of fun stuff. I won't be doing any of it. That time has past for me, I will be the guy that sits on the chair and keeps saying it needs another coat, even before the first one is on yet. Who will build my cottage doors, put up my wainscoting, my disco ball? I know this is just the start of this part but I already hate it! Just something else to get depressed over.

Fatigue Grabbed Me, Bioness Electrode Issues, and Evening Primrose for MS

What a beautiful pool weekend it has been. The temperature has been great, humidity low, perfect. I didn't go swimming today, yesterday wiped me out, that's where I find myself, not able to relax 2 days in a row. I could see the family in the pool, just couldn't do it. I am having a hard time adapting to what looks like my new circumstance. I rolled along for long time in the old, so I need to give myself some time, but I don't have to like it.

I need to talk to the Bioness people about the electrodes for the stimulator. Got a a note in the mail that each set I receive I will be charged for, that's cool, didn't expect they would be free. What about the first 25 sets or so I went through will we were figuring out to use the stim? What about the ones I had on backwards because I was told do so? What about the ones I hydrated, but wasn't supposed to. I may have to take it up with Dankmeyer, or Bioness, either way, I don't think I should have to pay for the ones to replace the electrodes I was instructed to use wrongly. Where are they with the new cloth backed electrodes? I'm sure they will let me know when they are available.

Evening Primrose, what a pretty, native plant. Did you know it was one of those flowers you can eat, the whole thing. Anybody had any luck with it slowing the progression of MS? I could throw some on a salad, make a tea from its leaves, or even boil it's roots if it was going to help. I guess it would be easier to add Primrose oil to my morning oats, if I thought it worked. Medicine hasn't worked, I may as well eat flowers! Let me know if you had any luck with this one.

Idiot Garden Letdown, Home Appraisal, and Oldies Music For Me

The idiot garden has been both a joy to do, and a constant reminder of my ever mounting disability. I hate that word, disability, sounds like I got hit by a train! The skinny on it is I don't have the energy to do even the simplest of tasks anymore. My peppers and eggplant are exploding, while my pickling cucumbers are winding all over the yard. They should of been on a trellis, so should the tomatoes, I have all the stuff to do it, just haven't. I can't explain it, just can't make myself go? I probably lost my tomatoes, we had a storm the other night, it looks like their weight snapped the stalks off down at the base. The wife said I should ask for help with it, but where is the fun in that, I may as well give her a grocery list.



The guy came to do the appraisal for the house refinance, he was here about 15 minutes. Now I know he has work that will be done back to the office, but that was a quick $350. I told the wife, he probably has the loan amount, just has to make sure house is worth at least that much, which it is, probably close to 3x's as much. The guy spent more time telling me about his new computer, and why he thought it was a wise move to go this route. He even managed to fit in a story about spending $250 to get his laptop wireless ready, only to find out windows 95 wasn't compatible with Verizon's gateways. Hey measurement boy, less talking, more appraising! We should find out in a few days where we stand.

When did my music become easy listening oldies? I had the radio on all weekend, one great song after another, but wasn't I a rocker once? Didn't I listen to Ozzie, Jethro, and the Stones? Sure, there was Barry, and the BeeGee's, but I was all about Boston, Kansas, and Deep Purple. Are you telling me that if 40 years pass something is considered an oldie? Geez, I could be in trouble then! I'm listening to Prince right now, OK, not heavy metal, but a real talent. Just imagine what people would think if they heard my collection of Dean Martin songs!

One Trip Down, Time For the Wife To Grieve, and Total Energy Drain

The wife and boy are finally home, and he put on Facebook he's bored! I'm going to give him something, a board upside the head! It was a long trip, 8 days, and I missed them both very much. They are only home a few days and they are off again, this time to Vegas! I was excited when I was a kid to go to Bustletown, PA for a basketball tournament for the weekend! The boy did pretty good, had a great experience, learned a lot. I'm hoping to get him on the sports shot at Perry Hall before he heads out. That's the key, bowling the sports shot over the house shot. That will be my goal when they get home, and to get the boy driving!

The wife was away when our friend's daughter passed, she is feeling horrible that she wasn't here. I told her she was she belonged, with our child, but she still feels bad about it. We are going to dinner with them on Tuesday, should be another tear jerker!

I think I have swine flu? It could be an avian version from Hong Kong? I'm not sure what I have, but I've got it! Can you get legionnaires decease without leaving the house? I think it's probably more a matter of being able to relax now that my baby is home, but that makes me sound like a wuss! My body is humming, feels like someone has a bare electrical wire pressed against my spine. To say I have no energy would be an understatement! I slept all day, or sat around, and I plan on doing the same thing tomorrow, that is if my malaria isn't worse.

Computer Building, Stress and MS, and Let's Be Nice to Each Other

Made a computer today, it was like Dr. Frankenstein's lab in the basement! I have 5 or 6 old computers I have gathered over the years, some mine, some not. I am loading the Ubuntu operating system, a member of the Linux family. I've always had windows computers, so this should be a hoot and a holler figuring it out. I've been wanting to do this for a long time, since I was planning to take it easy for a while, easy decision. If this one works, and doesn't start a fire, I'm going to make a mega computer to act as a server, I just have to figure out what that means!

Stress is not my friend, and from what I read on other blogs, I'm not the only MS'er that should avoid it. I feel like I'm having an outer body experience today, like I'm not all here. Just to head off the comments, yes, I have been told I wasn't all here before, a few bricks short of a load, a few fries... you get the point. My hands are extremely numb, feel like they are swollen 5X's their normal size. I am having problems with my eyes, first time in a long time. Everything is very bright, somehow hazy at the same time. I'm going to give it another day, if it gets worse I will deal with a probable exacerbation, but not today.

I've been thinking all day how easy it is to be nice to people, but how seldom I see it anymore. The wife and I were talking whilst at sea, the minimal effort involved dealing with in-laws, or parents in general. We are both closing in on 50, her 13 days before me, yippy, so logic says our parents aren't spring chickens anymore, and with that comes some issues we have to adapt to. Memories aren't what they once were, physical abilities wane, decisions need to made in how to handle the changes. We have to decided to listen to the stories again, answer the questions too, not make them feel bad about having done it. For those who choose not to be patient, not be caring, all I can hope is that they have one child that returns the favor down the road.

Multiple Sclerosis, Vacation Fatigue, and Family

I was looking through the pictures from Bermuda, I was trying to see if I got a snap of the bus that hit me! I'd like to say this is odd, but this happens every time I go on vacation, or try to live life in the normal world. I don't see that I have much of a choice though, I'm not willing to give up going with the family, so for now just grin and take it. The wife and the kids understand it will happen, and they look for it. It's getting so my recovery time is longer and longer. I will be down probably until early next week I suppose, life is what it is.

My family is all down my sister's this weekend for the 4th. The sister has a beautiful place on the water, not too far from Ocean City, MD. She has a big party every year, we usually don't make it, mainly because of how I feel when I travel. It's 3 hours down to her house, that time in the car, added to the quick turn around of the 4th, doesn't make for a very pleasant trip. The bad part is, I don't think they understand why I don't go. That's tough, we were very close at one point, but time and distance take their toll, even the continents drifted apart! I was down the parents house a few weeks ago, saw the sister one day for about 30 minutes, hurts. I also have a brother that lives about a mile away as the crow flies. I haven't seen him for a couple of months, people tell me my MS makes him uncomfortable, sorry about that!

I think a lot, especially when I'm run down like I am today, when will this feeling not go away? I remember playing racquetball, about 20 years ago, had a great workout, one of those kind that I had that burning sensation all over my body. That feeling has not left since that day, not for one second. Is this near paralysis on my right side going to stay this way, this time, or will it be the next? I always heard, and always believed, knowledge was important, but the older I get, there are certain things I wish I wasn't so sure of.

Multiple Sclerosis, Digital TV Conversion, Fatigue Getting Worse, and the Wife Still Sluggish

Who do you think is getting the kickback from this digital television conversion? Is this in our best interest, or theirs? All of this high definition crap is getting out of hand. I watch TV when there is nothing else to do, the wife on the other hand has the TV on all the time, I think it's background noise for her. I don't need all this extra stuff, I haven't bought a new TV in years, I claim family member TVs when THEY get new ones, so just let me watch my old TV, and stop the digital conversion countdown everyday!

The wife is still not feeling up to snuff, she's really milking this one for all she can get! She is sleep deprived most of the time anyway, we are working on correcting that one as we speak, but she is extra tired right now. The cough is persistent too, but the medic said she would be fine, oh yeah, if she rested! She takes great care of us all, I just need her to start taking the same care of herself.

I need to make an appointment to find out about this fatigue, it is getting out of control. I slept until 9 or so this morning, and was ready for a nap by 11:30. Next thing I knew it was 2, I got up and was still tired! It's not a sleepy tired, but I figure I may as well sleep since I don't have the energy to do anything else. I'm trying the baby step approach, the problem is I am accomplishing what you would expect from a baby!

Multiple Sclerosis, Pacing the Stimulator, Garden Chores, and My Babies Under the Weather

The wife is sick, is that allowed? Who will take care of me if I need anything? What if one of the kids need something from a parent? I don't remember voting on this, or giving this my Okie Dokie. I suppose I can pick the boy up when he's finished, but I cleaned the kitchen for Pete's sake! She's sleeping on the sofa right now, I'm going to put her to bed so I can hear the hockey game! I guess I can man the watch so she can rest, she sure has earned it.

I'm looking at the stimulator from a different angle, see if it makes more sense this way. I used the cane today, and it made a big difference, especially with my knee. What ends up happening is my leg gets tired, so I start hyper extending the knee. If I use the cane, it doesn't happen as quickly, and isn't as severe when it does. I think I need to acquiesce to the fact this may take some time. It is working, and after having it tuned up on Monday, I hope it works even better. Most of all, I need to give my body a chance to adapt to it, and get stronger, I can do that.

If the weather cooperates, I am going to make the rest of my idiot garden tomorrow. I bought some more plants, including some variegated sweet potato vine for my arbor at the gate, and some moon flower seeds. I'm debating if I should fill the tubs up with compost from the dumb. My one buddy uses it all the time, says it's great, the price sure is right. I need 2 cubic feet per bin, and I have 3 more to make.

Multiple Sclerosis, Weather, Housing Crisis, and Help Getting Up

The weather did its flip flop, the meteorologist dude didn't miss this one, just my luck. I am drained, haven't done a single thing, doesn't look like I will either. With a high of 56 today, it has the potential for a 40 degree swing in temperature in 1 day! I suppose I'm getting to the point that I will need to create a sealed enviro for myself, keep a constant year round temp and all. Next thing you know I'll have Kleenex boxes on my feet and store bottles of urine!

The wife and I went for a drive last night. We toured all the newer sections of Perry Hall, something you can't do in a few minutes. It was scary how many houses were for sale, or appeared empty. It is also apparent that most of the new home owners wanted little, or no yards at all. Don't get me started on the size of these houses either, most appear to be the kind where you can brag about your square footage, that is until the bank took it away! We had a good time, but not as good as coming home, and we can still afford to live here, and take rides!

I need a device to help me get up out of the chair in the living room, where I sit most of the time. They sell things called chair risers, but most of them look a little flimsy to me. They also sell furniture leg extenders, to raise the height of the chair. I think I like these better, I need help getting my legs past that 90 degree angle where I can more slide off the chair if that makes sense? I feel like a weight lifter who is trying to lock out his legs every time I stand up.

Multiple Sclerosis, Meeting With Bioness, Travel Difficulties, and This Weather is Killing Me

I am impressed by the level of customer service I am receiving from the Bioness company. The representative that emailed me on Saturday did in fact call me on Monday, that alone puts a check next to their name. He asked me how I would like to handle the issues instead of telling me, nice touch. I had an appointment already scheduled with Dankmeyer, the place I got the stimulator from, the representative said he would check with his associate to see if she was available that day as he was already scheduled someplace else. Later the same day I received a call from her confirming she would be there to iron out any issues, swish! Like I said, either this is really good customer service, or they want me to stop whining on here, either way, I get what I need.

My mother had eye surgery today, it kills me I wasn't able to go down and be there. In the overall scope of things, this was a minor procedure compared to the things she has had in the past, but I still would have liked to have been there. Deep down I suppose I'm still a real momma's boy, but why wouldn't I be, she has always, unequivocally, been there for me. I hate MS for things like this. That 3 hour drive is no longer in my repertoire, more and more it's becoming obvious that driving is a short term project. As long as she knows I would have been there I suppose that is enough, it will have to be.

I have a tough time when the seasons change, not the emotional tough times some have, mine is physical. It takes me a few days to adjust as it gets warmer, or as it gets colder. This weather here in Maryland is killing me! As if I'm not lethargic enough, the constant changes in the weather is taking what energy that is left, leaving me a quivering, listless, numb, mass. EWWWWWWW! That was disgusting. It's 85 today, but will be 60 tomorrow, check please!

Multiple Sclerosis, Vehicle Held Hostage, Changing Scenery, and Marrying Well

The wife had a business dinner for a new surgical center she markets for tonight. The caterer she used is also going to do our 25th anniversary party this fall. The food was excellent, it better be, we have a ton of it here! We are going to be renewing our vows at the church the kids were Christened in, and we will be buried in the church cemetery. I don't mention the cemetery and marriage in the same sentence for any particular reason, it just worked that way. I'm looking forward to it, it having been the smartest thing I've ever done.

We took the car and dropped it off Sunday night, they called this morning and told us they can't figure out where the oil leak is coming from. They had for 2 full days, have years of training, and they came up with the same thing I did! They are going to see if it is more apparent tomorrow where the leak is leaking. The wife is taking my truck to work, leaving me stranded. Funny thing is I go days, sometimes weeks without leaving the house, it's just different when you know you have no wheels.

I changed things around for today, moved the command center into the family room, down in the basement. I commandeered the boys desktop, added a new user, loaded all of my things on that. There is a bathroom right on that level, everything but a kitchen, I just needed a change in surroundings. I think that's one of the toughest things to deal with in this mess? Sure the physical part is bad, but the mental part is just too much sometimes. Thank God I love this house, I can see every inch of it in my mind, I've had the time to memorize it.