June chitchat

[Prot]

You've not scared me away.It's part of the coping process to talk about the psychological and practical matters that occur when someone close to you passes away. Virginia I'd love some of your warmer weather, but not if it's scorching hot

[Virginia]

Thank you Tim for still being here. I am afraid it is about to get scorching hot. I am wiped out from MS and really hot weather does me in. I have no choice but to try and stay inside in air conditioning. I think Agate's weather is a little better. She is able to go out for a walk and keep her step count up. My step count gets down to almost nothing and that is one reason it is so important for me to do my leg exercises.

[Prot]

Do your leg exercises help? I have very basic leg exercises to do. I've been a bit lax doing them recently.I should be less sedentary . Normally it's my left leg that plays up if I'm upright, moving or still , for more than about 10 minutes. However that hasn't been that bad the last 10 days or so. Instead I'm getting the kind of pain in my right knee that has you involuntarily swearing.

[Virginia]

Tim, I wish they could find the cause for your pain. It is bad to be in pain all the time, but especially when you don't even know why.

I hope Agate is not having a bad time right now. I don't think she has been around for a couple of days. I hope she is just busy right now.

I forgot my shot last night, so I gave it tonight but it was after eleven PM and I am sitting up late. Sometime when I go to bed right after giving it I have a bad night.

[Prot]

Virginia, what shot do you have? Is it difficult to give them to yourself? Hopefully Agate is just busy as you say,preferably doing something enjoyable. A GP has said I have RA but that was on looking at my hands. I did think the partial hip replacement would take away the pain,but 29 months on from having it I still get pain. Lack of sleep and being upright for more than a short period of time,moving or not,seem to be the main culprits. I shouldn't really moan, as many are a lot worse off than I am.

[agate]

Thank you, Tim and Virginia, for your concern. I've just been entirely too busy.

I have a new printer that I've been trying to set up but there just hasn't been a lot of time. However, I've progressed on it. My old printer, which was a hand-me-down from my son and so not registered in my name, developed so many problems that it was hopeless and I got rid of it a long time ago. I've been without a useful printer for over a year now and thought I could continue printer-free indefinitely.

But I found that some of them are much lower in price now and realized that there are times when it's almost essential--sending packages through the US post office's "click and ship" program, for instance, where you have to print a label.

The printer issue will be on hold for a little longer while I catch up on the things I left undone. Today I was picking up my new glasses, and it is so very nice to be seeing better!

But I waited an hour and a half for the return ride. The vehicle that was scheduled to come for me broke down, and it took a while for another van to be sent around. Meanwhile I was waiting in the wheelchair in the drafty and crowded eye-health place, where a mob of people were waiting for cataract surgery appointments. There must have been at least 20 of them in that section, and at the eye doctors' reception desk there was a line stretching out to the main entrance, and people were having to take numbers. It's been like this lately at this place, and I'm not sure why. It was hard for me to find any room for the wheelchair and me.

Also their washroom has a code and a very heavy door. Every time I try to use it, I have a major struggle with the door. At least I didn't have to ask the guard for the code because I memorized it after I overheard him give it to someone else.

Yes, there is also a uniformed guard just sitting at the entrance. His only job--at least the only thing I've ever seen him doing--is to give people that code when they ask for it. Otherwise he just sits there. I know because I've had to wait there, right near him, several times for long stretches of time. He just sits and sits. Today another man was trying to engage him in conversation, asking him a lot of prying questions like, "Are you from another country?" But usually he's just silently there.

This seems like a poor system. If the intention is to keep drug addicts from using the public washroom, I don't see how this could work. Anyone could come in off the street and ask for the code. If the guard said that the washroom was strictly for patrons of the eye-care place, that person could make up a story about needing to see the optical department or an eye doctor.

That's my rant for now.

[Prot]

agate I haven't used a printer for many years. The ones I did use cost a fortune in printer ink! Is the transport you use to go to and from home something like this Only registered and activated users can see links., Click Here To Register... ?

[Virginia]

Agate, what an ordeal to go through. If you are anything like me you must get exasperated beyond words. To have to wait that long is tiring to say the least. I hope you continue to enjoy your new glasses. If they help you to see better that is wonderful. It is interesting that the optical place has become so crowded. I wonder if another one has closed and the patients are all being sent there. I would think they would have to make an appointment.

I want to go to my ophthalmologist, but the location of his office is in a very congested area and I am getting concerned about driving there. Obviously it will be a long time before I ask my brother Eric to take me anyplace. I hate to go some place else because this is the doctor I have been seeing for decades and he knows all about the MS and optic neuritis I have had and he knows about the blind spots I have and checks for more. So there is that important history.

I don't want to be without a printer. Mine is eons old, but I hope it keeps going because I cannot get on the floor to run all the lines. I needed to print something out yesterday and my ink cartridge had run out. I ordered one but it will not be here before the 20th to 30th of this month. This morning I was reading the digital copy of The Washington Post and as I was going down the headlines there was an article about Grayson Murray and the impact his death has had on the golfing world. Some top golfers spoke of the stress and loneliness of being on tour away from family. Many of them have had problems. They are going to try to do more to get them help. It isn't as though you have 40 or more teammates around you as soon as you play a tournament. You travel alone, eat alone while on the road and spend your time in a motel alone.

This was a long article and I wanted to print it out, so I will save it to a folder when I go to my computer. When I get a cartridge for my printer I can print it out. There have been so many articles in places like the N.Y. Times, the N.Y. Post, CNN and so many, many others, but this one struck me because his family wants his legacy to be about fighting mental health and shining a spot light on it.

Tim, I wonder if a lot of your pain in other areas is maybe due to RA. You might have it in places that have not been diagnosed. Isn't there a blood test that can be done to determine this. If so, ask about it. I know that some people suffer badly from RA and others seem to have a milder course. I guess this is true with all autoimmune diseases. You might to do a search on Alison McIndoe. I think she is from Glasgow.

In answer to your question about the shots I give myself, it is a disease modifying medication. We don't really know if they work or not. I think some of the newer ones have proven to be quite effective when started early on in the course of the disease. Mine is an older one, but the doctors are afraid to change me. Many of the newer ones deplete b cells which can cause infection. Since I am older they don't want to take that chance. Yes, some of the shots hurt and some do not. When they don't hurt at all I get concerned about the stability of the medication.

[agate]

Virginia, I didn't realize that about tournament golf--that the star players are really so very alone. Maybe that's what "the loneliness of power" means. A person thinks of baseball players where the team members all congratulate the one who has saved the day by pitching a perfect game or racking up a lot of runs or whatever, but of course golf isn't really a team sport if I understand it (and I definitely don't know anything much about it!). There definitely should be more support built into the golf world so that the champion players aren't expected to just excel all by themselves without anyone to help them. Do they have managers or handlers at least? I always thought of Tiger Woods as being "managed" by his dad because I had heard that his dad more or less pushed him into excelling at golf from an early age but I may have got that wrong.

I hope your print cartridges will arrive sooner than June 20 or 30! This new printer offers a deal where I would pay $2.49 a month and they would automatically send me enough ink cartridges based on how much I'm printing. This struck me as a good deal at first, and then I started signing up for it and realized that they would have access to a lot of information--AND the fine print states that I should check with my Internet provider as they may have "data charges" or whatever for providing their part of this service. For the $2.49 a month they would supposedly supply enough ink for me to print 40 pages, and if I printed more pages than that, there would be an extra $1 charge (per 10 pages, I think). That sounds like a good deal because replacing all 4 cartridges will cost a minimum of $40. However, I just don't want to deal with anything that involves my Internet provider any more than they are already involved.

So I backed off and decided just to go on ordering cartridges as needed, as I've done in the past with 3 previous printers (dot matrix, laser, then ink jet). I am almost sure that my Internet provider would be more than happy to tack a few more charges and fees onto my monthly bill. I don't even want to get on the phone with them and ask. Communicating with them for any reason is a long and frustrating process.

As for the eye health place, the whole system has many locations in this area, and it is possible that they've been closing some of them. Each one seems to have several ophthalmologists as well as an optical department where you can get glasses. Some of them have surgery centers, and some don't. A person does need an appointment but not for the optical department if you're just shopping for glasses by bringing in an rx or coming in for an adjustment. So there are large numbers of people coming in without appointments, as I did on Tuesday.

You might want to reconsider about asking your brother to take you to an appointment. He might welcome a chance to feel useful, and it might be a relief for him to have something else on his mind.

[Virginia]

Agate, professional golfers have managers, coaches and lots of people. However when they are on tour they travel alone, eat alone stay in motels and are often gone from family and true friends for several months at a time. They like and respect their fellow golfers a lot in most cases but they are still competitive. My nephew had stated that he hated the life but was passionate about the game.

The married golfers usually do better, and sometime the wives travel with their husbands. However it has broken up many marriages. They work hard. They not only practice their golf, most of them train to stay in shape. They also have to work on their mental health. After all this they very often get to a tournament and do not qualify to play. Then they are heartbroken, they have to keep going to the next one. Or maybe they just have a bad game that week. It happens all the time. In my nephews case he suffered from anxiety and depression. His coach from the age of 8 on said less than 1% of golfers could make it to the PGA. To think he did it while suffering anxiety and depression.

I wanted to ask Tim if his doctors had discussed Fibromyalgia. I happen to think about it tonight and thought maybe if they haven't mentioned it he might want to consider bringing it up to them.

[Prot]

n it.

Tim, I wonder if a lot of your pain in other areas is maybe due to RA. You might have it in places that have not been diagnosed. Isn't there a blood test that can be done to determine this. If so, ask about it. I know that some people suffer badly from RA and others seem to have a milder course. I guess this is true with all autoimmune diseases. You might to do a search on Alison McIndoe. I think she is from Glasgow.

Thank you very much for the answer and info. I know little about autoimmune diseases beyond the fact they affect more women than men. Also that stress can make things worse. I'm someone who's prone to a flu like physical reaction if overly stressed. It's a sign of how good the move to be near my daughter has been that in the nearly 7 years of being so I've not had such a flu like reaction. There's been stress,but not at anything like a 'flu' inducing level.

I don't know much about golf. What I do know is that depression can occur in people irrespective of how ideal or not their life might be. There used to be talk of endogenous and non endogenous(exogenous) depression.

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I know about fibromyalgia, but have not thought that it affects me.


The pain might apply.Ditto the anxiety and TMJ. Like many with autism I tend to go from constipated to the other end of things. I'm not overly fatigued. I've never had a great sleep pattern. That stretches back to infancy. At 67 there might be some naturally occurring cognitive decline compared to my peak, but that hasn't stopped me doing quite well at high range IQ tests.

[Prot]

Daughter is going to contact GP tomorrow re the pain in my knee that occurs if I stand up for hardly any time at all. Weather here is ridiculously cold for June. Despite that it's been an OK day so far. Not brilliant, but I've had far worse days. I hope both of you are having as good a day as possible.

[Virginia]

Hot weather is hard on many people with MS and that is true of me. I kind of just give out of the little strength I have. Our weather is so bad where I live because we generally have high humidity. I would wish for a little of your cooler weather. I used to wonder why my friends liked the summer so much. Then I was diagnosed with MS and realized why I didn't like it. I used to love Spring and Fall, but lately it seems we pretty much go from hot to cold and back again.

I had meant to answer your question about my leg exercises. I just do the side kicks, back kicks, standing on tip toes squats, sits to stands, walking sideways for balance, high stepping and pulling on my stair railings using the stairs to help me do step ups. That is about it for me. It takes about 40 minutes when I do them right.

I can tell a little difference in the strength in my legs, not much but I think it is good for the muscles. It seems something always happens and I don't do them like I should. I am supposed to do them everyday, but often things happen that I get stressed over and my exercises go by the wayside. I need to do some cardio but if I do the leg ones it is all I can do.

[Prot]

40 minutes! That's a lot of exercises! Mine are much less.Sit to stand- two hands,hip flexion sitting,knee extensions sitting, and leg lift. Each are supposed to be done 5-8 x twice daily. The last one I have to do on the bed, as it would not be a good idea to lay flat on the floor. I tend to leave out that last one. I think you're right about the muscles.

[agate]

Wow, Virginia, that's an impressive amount of exercise! I do mine in dribs and drabs, a few minutes in the morning, a few minutes in the evening, and a few more minutes at bedtime. I'm not sure how many minutes that adds up to but not 40. When I walk around and increase my step count, that's only about 15 minutes of walking at a time.

Tim, one of my knees starts hurting lately if I stand or walk for very long. Since I have (osteo)arthritis, that's probably what it is. I wouldn't be apt to try lying flat on any floor any more. Getting up might not be possible.

[Virginia]

Sometime, as like today I also do mine in drips and drabs. Even though that is how I did them today I still didn't do them all. It seems like something often comes up or I just have a bad MS day and I am able to talk myself out of doing them all.

Agate, I bet if you did them all at one time and timed it you would find you probably do 38 to 40 minutes. I haven't been doing any house cleaning lately or much of anything so when I don't do any exercises, like the past couple of weeks, I can really start to tell it.

[agate]

Getting used to the printer has been taking any spare time and energy for the last week, and I'm certainly feeling the effects of that even though it hasn't meant so much extra physical effort.

Getting the printer out of the box and onto the stand was a challenge as it weighs about 17 lbs. and I was afraid I might drop it. Dropping it on my foot wouldn't have been any fun.

Then dismantling all of the material and getting it to the dumpster was another physical project. But aside from those two gigantic efforts, I've mainly been puttering with it and looking for information. It's a very simple printer, really, and so I'm hoping to get it totally set up very soon. It has a fax capability but I don't do faxing at all, and I don't want to use a phone or an iPad with the printer either.

But I'm hobbling around here and very stiff just from that bit of extra effort. I did need to keep up with the laundry and housework to some extent but I've neglected a lot of things just to make way for the printer effort.

Printers have come a long way since the dot-matrix one I started out with, which was a hand-me-down and 10 years old at the time I acquired it.

Virginia, is there any word from any of your family? How are they bearing up?