I was thinking this evening about how much the world has changed since I was a kid, and frankly it's kind of depressing. I remember when I was much younger shopping downtown at Woolworth's and McCrory's for all sorts of things that interested me when I was a kid. You could find everything from school supplies to magic tricks, even pets at Woolworth's. It was one of two Woolworth's stores in town. The other was at the Mall. That store had hot roasted spanish peanuts just inside the entrance and the aroma wafted out into the common area of the mall. If your appetite was a little heartier you could always grab something from the lunch counter also inside the store.
That wasn't the only lunch counter in the mall, either. There was one inside JCPenney. Not only is the lunch counter long gone, but so is the JCPenney store. Another store I remember in the mall was the SuperX drug store. It changed hands two or three times before it finally went out of business altogether. There used to be several drug store chains in town along with numerous independents. Most are long gone. Hook's was bought out years ago and changed hands along with the rest. The last I knew they still had a Hook's museum at the Indiana State Fairgrounds, though I haven't checked recently to see if it is still there.
We used to shop at T-way when I was a kid as well. It later became Hill's and stayed in town for many years. It is gone too, and is now a Big Lots. Back in the day there were lots of locally owned businesses as well, men's stores, and women's stores, and several chain stores that were more local to Indiana and the midwest. They are pretty much all gone now.
It is not just the retail shopping scene that has changed either. It seems everywhere I look, businesses have either closed or been swallowed up by big corporate mega-chains. Everything from doctor's offices and dental offices to even the local cable company have been affected. My doctor used to be in a small but adequate building he rented in a small town. Doctor visits were $20 at the time, no matter what the problem was, and you could pay him when you had the money.
There aren't nearly enough local restaurants around to suit me these days either. I get the phone book out every once in awhile when I am hungry, looking for some place I might have forgotten about, but I always end up disappointed that nothing has changed. I guess that's okay, though, as I end up saving money by eating at home. I don't spend much at the stores these days either (not that I have any to spend anyway). Maybe that contributes to the economy being the way it is right now. Something to ponder.
Friday, July 24, 2009
Thursday, July 23, 2009
The Obama Healthcare Plans
I am watching the re-run of the Obama press conference on the healthcare plan, if you can call it that. I guess since we still haven't heard any specific details of this plan, and congress is still debating, it is more like the Obama "pipe dream". I am all for drastic changes in the healthcare system IF it reins in costs to the consumer AND delivers better healthcare to the citizens of this country. But I don't see how it will get done, at least not yet. I am all for the so-called "public option". But I don't see how we will ever get this as long as the insurance companies are running the show. And make no mistake, they have been running the show for a LONG time now. Of course I don't know how this will affect me and others like me that either have a disabling condition or a long-term health problem. I am waiting on congress to get their act together and even present a plan yet. I am kind of tired of hearing the talking heads yapping about "socialized medicine". When you have an industry as out of control as the so-called "healthcare delivery system" and so many obstacles to actually getting healthcare like access, out-of-control costs etc it is TIME for a change. No one is complaining about the police or fire departments we all depend on being "socialized". And something as important as healthcare quite frankly should not even be a part of the capitalist system if they can't be reasonale and fair. I thank God every day that I am getting my current care from a charity program in a Catholic medical facility, because without it I would be screwed. Anyone know how I get a personal lobbyist on Capitol Hill?
Last night I decided to ride with another carrier on his route to help out, but that turned out to be a big mistake. Part way through the route I got very ill. I was dizzy, and nauseated and broke out in a sweat. I felt like I was going to vomit at any minute and had to have him break off the route and drop me at a local convenience store while he finished the route. (We were too far from home and there was not enough time to take me home and still get done on time). After a trip to the rest room, I just sat at one of the tables for an hour or so and rested. After a short while most of the symptoms subsided and I made a couple of calls to other carriers to pass the time. By the time I got home I was feeling a little better, so I think a lot of it was car sickness.
While I was sitting at the convenience store an friend and former co-worker whom I hadn't seen in quite some time came in so I got to talk to him for just a minute. He wanted to catch up but was running late for work so he said to call him on Friday.
I took my Betaseron shot today. I was on their website the other day and signed up for an account. They have some real neat services that no one told me about. One is a reminder service where they send you a reminder email on the days you need to take your shot. If I am not mistaken they also have a cell phone texting reminder as well and they also have some type of MS friend "mentoring" type of program where you can schedule a chat with another patient who has multiple sclerosis.
I have also recently signed up for a Facebook account, for no other reason but that my sister asked me to. It turns out that I am very glad I did. Not only am I able to keep up on many of my extended family members much easier now, but I have re-connected with some old friend as well. For me being somewhat homebound a lot of the time, it is a definite plus in staying connected.
Last night I decided to ride with another carrier on his route to help out, but that turned out to be a big mistake. Part way through the route I got very ill. I was dizzy, and nauseated and broke out in a sweat. I felt like I was going to vomit at any minute and had to have him break off the route and drop me at a local convenience store while he finished the route. (We were too far from home and there was not enough time to take me home and still get done on time). After a trip to the rest room, I just sat at one of the tables for an hour or so and rested. After a short while most of the symptoms subsided and I made a couple of calls to other carriers to pass the time. By the time I got home I was feeling a little better, so I think a lot of it was car sickness.
While I was sitting at the convenience store an friend and former co-worker whom I hadn't seen in quite some time came in so I got to talk to him for just a minute. He wanted to catch up but was running late for work so he said to call him on Friday.
I took my Betaseron shot today. I was on their website the other day and signed up for an account. They have some real neat services that no one told me about. One is a reminder service where they send you a reminder email on the days you need to take your shot. If I am not mistaken they also have a cell phone texting reminder as well and they also have some type of MS friend "mentoring" type of program where you can schedule a chat with another patient who has multiple sclerosis.
I have also recently signed up for a Facebook account, for no other reason but that my sister asked me to. It turns out that I am very glad I did. Not only am I able to keep up on many of my extended family members much easier now, but I have re-connected with some old friend as well. For me being somewhat homebound a lot of the time, it is a definite plus in staying connected.
Saturday, July 18, 2009
SLOW DOWN!
I have had a very rough week. My frustration level has never been higher. A certain amount of it is my personality, and a certain amount of it is the feelings of no longer being in control and having to depend on other people for so many things. On Tuesday I hit my limit and had a crisis of sorts. After talking to my nurse from the MS clinic I called my neurologist to get some medication for depression and anxiety. He is starting my on Lexapro. He said it would take a few weeks to get the full effect. I sure hope it works well, and the sooner the better because I am just barely keeping it together mentally.
Ever since the MS diagnosis I have been having a whole host of issues. This week it has been what I call "slowness". I am not sure if there is a medical term for it, or even what is actually the problem (maybe the lesions), but I am having difficulty with things like words and speech, and my head feels "heavy". Last night it was like "drunkenness", and it was kind of scary. I had this a couple of other times in the last few weeks, but I think last night was the worst of the episodes. I finally went from my recliner to bed about 3:30 a.m. and laid there with that funny feeling in my head for awhile. It seemed literally like hours had passed when I checked the time, but it was only 4:15- 45 minutes later. That was the scary part I guess, that it seemed that time had slowed to a crawl. I am not sure about this, but I am going to bring it up at my next opportunity to someone on my healthcare team.
Earlier yesterday I went to the monthly MS patients group meeting. It was only my second time, but the group welcomed me like I was a veteran. They showed a short film about the research on MS, and there was a discussion and handouts. There are some really nice folks in that group and they are very willing to help out, and it seems that everyone is willing to share their experiences and knowledge. I brought up the incredible soreness in my legs and the "knots", and a few in the group indicated that they had similar experiences but that maybe they would pass. They also gave me some tips to avoid this.
Today I woke up about 11:30 a.m. and was still "slow". I had trouble even trying to figure out if I had anything to get accomplished today. After a short while I decided I needed more sleep so I went back to bed from 1 p.m. to 3:45 p.m. When I awoke I felt a little better, but the slowness was pretty persistent. I just decided not to worry about anything at all and just watch t.v. and rest.
This evening I talked to Lisa for awhile and got on Facebook for quite awhile. Maybe tomorrow I will feel a little better. I sure have a ton of stuff to get done this weekend.
Ever since the MS diagnosis I have been having a whole host of issues. This week it has been what I call "slowness". I am not sure if there is a medical term for it, or even what is actually the problem (maybe the lesions), but I am having difficulty with things like words and speech, and my head feels "heavy". Last night it was like "drunkenness", and it was kind of scary. I had this a couple of other times in the last few weeks, but I think last night was the worst of the episodes. I finally went from my recliner to bed about 3:30 a.m. and laid there with that funny feeling in my head for awhile. It seemed literally like hours had passed when I checked the time, but it was only 4:15- 45 minutes later. That was the scary part I guess, that it seemed that time had slowed to a crawl. I am not sure about this, but I am going to bring it up at my next opportunity to someone on my healthcare team.
Earlier yesterday I went to the monthly MS patients group meeting. It was only my second time, but the group welcomed me like I was a veteran. They showed a short film about the research on MS, and there was a discussion and handouts. There are some really nice folks in that group and they are very willing to help out, and it seems that everyone is willing to share their experiences and knowledge. I brought up the incredible soreness in my legs and the "knots", and a few in the group indicated that they had similar experiences but that maybe they would pass. They also gave me some tips to avoid this.
Today I woke up about 11:30 a.m. and was still "slow". I had trouble even trying to figure out if I had anything to get accomplished today. After a short while I decided I needed more sleep so I went back to bed from 1 p.m. to 3:45 p.m. When I awoke I felt a little better, but the slowness was pretty persistent. I just decided not to worry about anything at all and just watch t.v. and rest.
This evening I talked to Lisa for awhile and got on Facebook for quite awhile. Maybe tomorrow I will feel a little better. I sure have a ton of stuff to get done this weekend.
Tuesday, July 14, 2009
"Knot" My Day
I had to get out today to get some stuff at Menard's and Meijer's. I love Menard's for that kind of stuff, but I sure do wish they had electric scooters like the grocery stores do. I had a small list and just make one round, but it was exhausing. Then I realized an item I needed was in plumbing and not near the seasonal garden stuff by the checkout and my legs were already hurting pretty bad, so I had to skip it. I also don't like that you have to go in one entrance at one end and the exit is at the other end.
I also went to Meijer to get some groceries and when I was there I picked up a case for my cell phone for $6. Verizon wanted $20 and up. I needed to get the cell phone out of my pocket so it wouldn't rub on my leg as it was hurting my leg pretty bad. I picked up some Stouffer's frozen dinners on sale for $2 a piece and some frozen Waffles on sale. I am eating a lot more of this kind of stuff now. It's quick and easy meals. I used to make my waffles in a waffle iron, but that is just too much hassle now and I really like waffles. So, back to the old frozen, throw-em-in-the-toaster type. They aren't nearly as good, but they will do.
When I got home I had knots in both upper legs. I had to massage them a little and then I put ice packs on them for awhile. Tomorow I am going to try to find some of those gel packs to keep in the freezer, so they will be handy.
I also went to Meijer to get some groceries and when I was there I picked up a case for my cell phone for $6. Verizon wanted $20 and up. I needed to get the cell phone out of my pocket so it wouldn't rub on my leg as it was hurting my leg pretty bad. I picked up some Stouffer's frozen dinners on sale for $2 a piece and some frozen Waffles on sale. I am eating a lot more of this kind of stuff now. It's quick and easy meals. I used to make my waffles in a waffle iron, but that is just too much hassle now and I really like waffles. So, back to the old frozen, throw-em-in-the-toaster type. They aren't nearly as good, but they will do.
When I got home I had knots in both upper legs. I had to massage them a little and then I put ice packs on them for awhile. Tomorow I am going to try to find some of those gel packs to keep in the freezer, so they will be handy.
Sunday, July 12, 2009
Trip to the Doctor and a day of rest
Haven't checked in for a couple of days. I had an appointment with my neurologist Friday. My right leg is still weak as a kitten. I am able to walk around on it but I have to use to cane or I wouldn't be getting far. He checked the strength in my arm and leg like he always does, and we talked about some of my concerns. I also checked in with my nurse at the MS clinic. They are still getting some of their programs together there, but she is going to see about getting me the physical therapy they talked about when I was in the hospital.
Anyway, the neurologist signed for me to get a handicap license plate so I can park closer when I am able to drive myself and he signed for me to get a cooling vest from one of the MS agencies. The vest is something I can wear outdoors in the heat so I can stay cooler. He wasn't sure about the concept, but some of the MS agencies advocate them and one nurse I talked to said a patient used one on a bike ride and reported that it was still cool after two or three hours. I don't know if I will be approved yet for it, but I would like to have one because I haven't been able to garden or tend to me plants the way I would like to. I can't stand the heat and it often causes other problem including problems with vision and dizziness.
I also talked to the company that is providing my Betaseron. They received my assistance paperwork and it looks like I have been approved, just waiting on the final word. They said I should hear from the mail-order pharmacy by Monday or Tuesday. I reminded them that I will be down to one final dose come Sunday when I take my shot and that one would be gone on Tuesday. She said they could overnight the medicine to me. I am so thankful to be approved for the assistance, as this medicine is VERY expensive.
Anyway, the neurologist signed for me to get a handicap license plate so I can park closer when I am able to drive myself and he signed for me to get a cooling vest from one of the MS agencies. The vest is something I can wear outdoors in the heat so I can stay cooler. He wasn't sure about the concept, but some of the MS agencies advocate them and one nurse I talked to said a patient used one on a bike ride and reported that it was still cool after two or three hours. I don't know if I will be approved yet for it, but I would like to have one because I haven't been able to garden or tend to me plants the way I would like to. I can't stand the heat and it often causes other problem including problems with vision and dizziness.
I also talked to the company that is providing my Betaseron. They received my assistance paperwork and it looks like I have been approved, just waiting on the final word. They said I should hear from the mail-order pharmacy by Monday or Tuesday. I reminded them that I will be down to one final dose come Sunday when I take my shot and that one would be gone on Tuesday. She said they could overnight the medicine to me. I am so thankful to be approved for the assistance, as this medicine is VERY expensive.
Thursday, July 9, 2009
Today was busy, as usual
I had a ton of stuff to do today. I wasn't sure I could get it all done. When you have MS you learn real quickly to make lists, that way you can keep track of what you need to get done. I have already had several days of slow thinking and forgetfulness, so my lists help. The only bad side to this method is it seems like the lists get longer and longer, and it shows me how much I am not getting done. The things I did today were all important stuff, like faxing assistance forms to the company that is providing my Betaseron medication and visiting Family and Social Services to turn in some more forms. (I still am not done with all the forms they need, but a little closer). I also went to the hospital to take care of some business there. Then to the post office to change my address.
I am so glad Dad is well enough now to haul me around. My leg is still heavy, and my arm/hand are still numb and tingling, so I still can't drive myself. The air conditioning is "some-timey" in Dad's car and wasn't working well so the heat started to get to me and for awhile today I noticed my vision was starting to blur real bad again. I sure will be glad when this current phase of the disease goes away.
I sure do miss my job, as I really enjoyed delivering newspapers. I miss being out at night, and I miss the other carriers who were my friends. I was hoping that I would get more relief out of the medicine quickly so maybe I could get back to it, or at least sub a route once in awhile, but I was a little more optimistic I guess than I should have been.
I did a little cleaning at my new house this evening, and I am paying for it now as I am having pains all over, in particular a real intense pain right now in my spine. Going to take yet more pills and call it a night.
I am so glad Dad is well enough now to haul me around. My leg is still heavy, and my arm/hand are still numb and tingling, so I still can't drive myself. The air conditioning is "some-timey" in Dad's car and wasn't working well so the heat started to get to me and for awhile today I noticed my vision was starting to blur real bad again. I sure will be glad when this current phase of the disease goes away.
I sure do miss my job, as I really enjoyed delivering newspapers. I miss being out at night, and I miss the other carriers who were my friends. I was hoping that I would get more relief out of the medicine quickly so maybe I could get back to it, or at least sub a route once in awhile, but I was a little more optimistic I guess than I should have been.
I did a little cleaning at my new house this evening, and I am paying for it now as I am having pains all over, in particular a real intense pain right now in my spine. Going to take yet more pills and call it a night.
Wednesday, July 8, 2009
In the Beginning...
I have decided to start this blog for several reasons. Mostly it will be a communication tool for friends and family to keep up with my activities, the latest with my health and current treatment. It is not that I can't or won't talk to those who know me in person. But the life of an MS'er can change from day to day or hour to hour, especially when having an exacerbation of symptoms. And quite frankly I suffer from fatigue as is (as do many MS patients) so having to keep everybody up to date individually would be exhausting. I thought this would be a great way to tell the story one time, and my friends and family can keep up with me by checking in at their convenience and then when I see them or talk to them our visit won't be dominated by the "latest" on my health (which could go on for hours at times) and I could just enjoy their company. This blog won't just be about my health, or just about MS, it will be about ME and my life, and topics of my interest. But, as anyone with MS knows, when you have MS it is often a daily struggle just to make sure MS doesn't have you, so there will be a significant amount of material here relating to Multiple Sclerosis. Maybe I will meet some new friends along the way as well, who knows, this is the internet after all. If you have any comments, questions, or ideas as this blog develops feel free to shoot me an email at fallcreekfun@gmail.com.
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