The Center For Pain Management, and Lottery To See Who Gets To Drive Me

Spinal injection today, they are doing the other side, can't wait! The Spine Center is my injector of choice, been with them a long time and the wife does their marketing. So far they've done a great job, and that's where my loyalties are! One more of these and I think I'm having a rhizotomy, something the father had 30 some years ago, said it was the most painful thing he ever endured. Good thing is that was 30 years ago, it's painless now, right? I want the doc to just do a spine-ectomy, take the part out that hurts, or kill it, simple enough, right?

The wife can't take me for my injection today, she is choosing to work over taking care of me, I see where this is going! This is like the time I had chemotherapy and she took the kids to Ocean City, MD. Me laying there in that cold, dark, damp, dungeon like facility while she cavorted on the beach with the cabana boys. Luckily I have an unlimited supply of very close, very dear friends who just simply adore me! OK, I actually do have a lot of people who would do things for me, but today it's just one, and she got the short straw, so I must try to be on my best behavior, though that is almost impossible for me.

Multiple Sclerosis, Medicare, and BGE Home Conspiracy

Day 5, no hot water, I'm starting to hear voices. Oh yeah, that was the BGE guy calling at 7:30 this morning to tell me he would be here by 4. The guy told me to make sure I had the HWH part. What part, are you threatening me? Oh the HWH part from China! Yeah that came yesterday, seems UPS is in on this global conspiracy, and China is not closed on Thursdays. This is usually when the guy comes, looks at, and tells me he thought it was an XJ72r HWH, not the XJ72s, this part won't fit, but they can have one here by Easter! If I had a tub I'd say I'd better be soaking in it by dinner or else!

Social security disability and medicare part A. I have been happily strolling along the garden path telling everyone, including my primary insurance company, that no, I have no supplementary insurance. I retired in '96, jumped through the hoops, kissed some ass, and said please and thank you. I received my SS in '97 with the help of then Senator Ehrlich. The SS person who took my original paper work told me the process would be 3 denials, 3 appeals, and I would get it. OK, she was right and I was happy to getting paid again, but what I didn't know was on the day I got approved, the clock started running. 25 months later Medicare part A would start automatically.

For 10 years now I have been on medicare and did not know it! What a maroon! Everyone has the right to be dumb, but I abuse the privilege sometimes. Didn't I notice the money coming out of my check? What did I think when I received my new medicare card each year? Why wasn't I more attentive? Shandra at SS told me it looked like I had never been sent a red and white card for some reason? Part A is free, nothing comes out of my check. The anesthesiologist that knocked me out in September when they took the chemo port out is probably pissed she hasn't been paid. I bet the insurance company is too, since they aren't my primary any more, haven't been for 10 years! I am just thrilled none of this effects the families health insurance, which is still in my name.

Multiple Sclerosis, Thyroid Funtion, and I Need a Break

Things have been slow around here, so I thought I'd ponder some health issues, there's a new pursuit! I was reading about ms and thyroid problems. Do I have one of those? Do I need mine checked? Does family history play any part in this? I called the neuro, he told me if I wanted it checked to add it to the script for blood work, but he wasn't aware of it being an issue with ms patients. A European study showed that patients with untreated ms were at risk for hypothyroidism. Untreated when?

I have a lot of thyroid problems in my family, I would think that may be significant at some point? Why can't someone publish an idiots guide to ms, ask these questions, try this course, rub my head and tell me it's going to be alright type thing? What am I going to do if all these things I want checked come back as a problem? I am taking for granted that I should have all these things checked, I never just assume it's the ms.

I have to call to schedule my first physical therapy session. I also have to call to schedule a time to be fitted for a new brace. Blood work, therapy, allergies, braces, anything else while I have the hood up? This wasn't supposed to happen this way, not to me, I have a contract! I suppose I should be happy there is no more chemo and that I had the port sliced out already. I want a break, who do I call? I want a day to search solar heaters, rain barrel construction, or even porn, but no more medical info! I am going to stage a wildcat strike, yeah, that's the ticket! Unfortunately, I will still be me when the strike is over, so back to the information grind!

Multiple Sclerosis, MS Clinics, and Going Off The Path

There is a pretty good website having to do with MS and diet, it covers a lot of the things that I have either tried, or want to try in the future. Multiple Sclerosis and Dietary Intervention talks about gluten, Swank, even ELISA to check for allergies. There is a lot of information there, but it is something each person would need to try for themselves to see if any of it works. I've got like a bucket list of diet alternatives that I plan on crossing off as I give them a try. I really would like to see more done with looking into a connection between MS and food hypersensitivity, unfortunately nobody asks me for my opinion!

There is a lot to learn, leaky gut, blood brain barrier, the list goes on. The problem I have found is that I seldom, if ever, get the same answer from one neuro to the next. I'm hitting some pretty good hospitals with these neuros too, U of MD, Johns Hopkins, not too shabby. My main guy is at the local hospital, but he has been very good. Franklin Square is also where I had my chemo, a great place for a horrible procedure. I wish I was a kid again and my mother could tell me it would all be OK, and it was.

For now though I must continue on my own way, stopping to get info along the way from people nice enough to share, like wonlife who gave me an idea for the leg cramps, large doses of calcium/magnesium. CMM is my shopping guru, she is telling me where to look, and she stops in on a regular basis, thanks for that. Anecdotal is all I have to go on now, so feel free to share, tell your friends to stop in and info me up, tell everybody, but not that strange guy at work, he will probably find me on his own anyway. Experts don't care much for anecdotal evidence, but they don't have anything better to offer me, so anecdote away!

Multiple Sclerosis, Vitamin D Therapy, and Surgery

I had the surgery to remove the port from my chest left over from chemotherapy and it was a piece of cake. They checked my oil, rotated my tires, and washed my windows, and did it all at record speed. I was finished before I knew it, not even having time to get a good whine started. The nurses, the doctors and even the candy strippers were excellent! My candy stripper was a 40 year old guy named Darrel who was a body builder! I can't catch a brake! The doctor told me to take it easy and I'd be back to normal, what a horrible thought!

I took my second dose of vitamin D on Thursday, all 50,000 units. They told me in the hospital that they weren't mg, 50,000 of those would kill me! I think 50,000 of these are killing me! I am having all kinds of unusual things going on. I have numbness like I haven't experienced in many years. It's hard to gauge if it is a sensation of more, or less feeling? I'll tell ya what it is, it's a dead feeling! I'm having problems with things like manipulating a fork, a tooth brush, all of those little things.

Thanks to everyone who inquired how I made out under the knife, and thanks to everyone who checks on how I feel day to day too. I need to start feeling better, this has gotten old. I have things I want to do, and this MS crap gets in the way. I'm hoping the D will do its job, and give me the opportunity get back in the game a little bit, this sitting on the bench sucks! I'm getting ready to start drilling my cans for my solar heater, I need to feel better so we can go off the grid! I even have a house picked out when the time comes, just need to feel good.

Surgery

Having surgery tomorrow to remove the port from my chest for the chemotherapy I had. Keep your fingers crossed, I'm not a big surgery person. The only other surgery, and I don't know if it is considered surgery, is when I was circumcised, and afterward I couldn't walk for a year!

Swank Diet, Low Dose Naltrexone, and Multiple Sclerosis

I'm trying to decide if I just am sliding on a good slope, or if the Swank is perking me up? I'm not out swinging from the trees, but I'm feeling pretty good today. Like I said before, MS or not, eating better has to be good for me. I like the idea that if all else fails at least I'm not killing myself with food anymore. I'm just hoping that I continue to feel better, I don't care why. Now if I can convince the rest of the family to join me, that would really make me feel good.

I went for my blood work today to see if I'm vitamin D deficient. That would be a kick in the ass if vitamin D is to blame for the last 20+ years of fun. Say I am lacking in the D department, what do they do, tell me to drink more milk? Is it a pill, an IV? Do they want me to move to Key West to soak up as much sun as possible? I was reading that sun block also blocks out vitamin D. Should I sleep with the lights on to get the most exposure as possible? Why are the docs so ready to go the D route when they won't even consider the LDN idea?

Speaking of LDN, I am set. I have everything ready to go, I am full speed ahead. I told the wife last night I didn't care about the blood work today, I was going to start last night, it was my body, my decision, if I wanted to hear her opinion I'd tell it to her! I was worried, worried I wake her up and she would hear me! So I decided to start tonight. Slow down big fella, not tonight. Turns out I have an appointment next week to have surgery. I'm having the medi-port removed from my chest I had put in for the chemotherapy. The last thing I want to have happen is for the anesthesia not to work because of the naltrexone. I know it's only 3 mg and would probably not have much effect, but then again, I can take pain meds like they are tic tacs! I've waited 20+ years, I can wait until next Thursday to start.

Swank Diet And Multiple Sclerosis

I remember when I was a kid hearing people say, "you are what you eat." They usually didn't mean it in a nice way. Is there more to that saying then I realized when I was little? I've asked my neuros over the years if there is a preferred diet for those of us with Multiple Sclerosis. Most of the time they have told me to eat a balanced diet, not committing one way or the other. It was only recently that my current neuro at the U of Maryland Medical center brought up the Swank diet, but he was rather indifferent to if I needed to worry about it or not.

I had read about the Swank diet a long time ago, so it wasn't a new idea to me. What has been difficult is getting a firm recommendation about if it is needed. Dr Roy Swank developed the diet about 60 years ago to help people with MS. The diet itself consist of a low fat, very low in saturated fat, diet. You are supposed to eat under 15 grams of saturated, and between 20 and 50 grams of unsaturated fat a day. That's not too bad, just cut back on some things to make room for others. I mean it's not like I can't have a good prime rib or anything, well after the first year anyway.

It's no red meat for a year, and then only a little bit once a week or so after that. Wow! I adjusted to the shots, to the IV's, the numbness in my hands and feet, but this is serious! No red meat or pork, for that matter, for a year! I can do that, piece of cake, slice of gravy. None of those either, by the way. It is basically a low fat vegetarian diet, but for the white meat chicken and fish. Oh, and shell fish. I like all of those, especially the shell fish. If the grams of fat are what's important, why's it matter if it comes from an Avocado, or if it is tied on the back of rare piece of cow?

I am going to head to the library tomorrow to check out the Swank diet book so I can see what he has to say. I figure I can start out slow, kind of ease into it. If I give up the really bad stuff, the Geresbecks eclair's, and the really marbled beef, I have to be better off. I will at the least drop some weight. Anybody out there reading who has had any experience with the Swank? Is it an all or none job, or is there room for interpretation? I said it before, if I did chemo, I'm willing to eat a more healthy way, it just sounds so severe. Let me know what you think.

Brazil Nuts For Multiple Sclerosis

Sounds like coo coo for Coco Puffs! I was reading a thing about mercury poisoning. It said that one of the best ways to rid your system of mercury was to take a selenium supplement, or eat one Brazil nut a day. I know how ridiculous that sounds, but it makes me wonder. I have done everything the neuro's have recommended, with the exception of ISIG therapy and Tisabri. The info on the net wasn't saying to grind them up and put the powder in my shoes! Selenium occurs naturally in the nuts themselves.

Is this worth trying? Can I do it? I like Brazil nuts, so that part is a given. Like I said once before, if I was willing to do chemotherapy, I'm open to just about anything. I did an entire year of a vitamin and supplement regimen, didn't do anything by the way, so I should be able to eat a nut a day! I am eating much better then I ever have, started back on the treadmill and the stationary bike. My goal is to be the healthiest person I know with an incurable glitch in my system!

I'm also looking for more information on LDN therapy. LDN is low dose Naltrexone. Like so many things on the net, it depends on which website you go to. People either love it, or think it is a total waste. The neuro's agree with the side that think it's a waste of time. I'm going to ask again about it. I figure the worst thing that can happen while I take it, since it's an anti opiate, I won't get addicted to Heroin!

Don't Worry, It's Just The MS

I hate going to new doctors. I'm not terribly thrilled to go to the old ones. You develop a certain relationship with your regular doctor that you don't have with strangers, if you're lucky. Being in Baltimore, I am close to both Hopkins and U of Maryland hospitals, and have been patients at both. I also have been seen at Mercy, Franklin Square, Good Sam, St. Joe's, and GBMC. It's not too bad when you go to a neuro that specializes in MS. You expect to give the whole history. I hate it when you go to one who isn't a MS specialist and as you explain your symptoms, they say, "NO WAY!" Not very encouraging.

God forbid you have to go the emergency room for anything. I no longer tell them I have MS, not right off anyways. The reason for that is I have had doctors right in the middle of the exam say, "oh, you have MS? That's probably what's wrong," end of exam. Whaaaa? They have to be kidding! How about when a doctor tells you, when you are there concerned about something that he isn't worried about it. I guess you're not you dumb S.O.B., you aren't the one going through it!

All of this brings me to this mornings rant. Just as I dislike it when a doctor declassifies my concerns because they find out I have MS, similarly I have to make sure I don't do it myself. It would be foolish to ignore things because it's probably the MS. Having been diagnosed over 20 years ago, I have developed my own form of hypochondria. I have a simple ache or pain, it's that damn MS again! I broke a tooth the other day that I'm waiting to have a crown put on. MS! Bad hair day? MS! It is something we laugh about all the time. My wife or kids ask me to do something, or I do something stupid, yes me, I have a stock answer. Actually I have a couple. Either it's that I can't do it because I have a condition, or because I'm in the witness relocation program.

Funny story, at least I think so. When our daughter was elementary school, she is a junior in college now, looking at a January term, or Jan-term, in Israel, Jordan, Poland, Prague, and someplace else not here! Anyway in elementary school they bring all those forms home to sign. I hate filling out forms. I told her to wait for her mother to come home, I wasn't allowed to do it because I was in the witness relocation program. She told me what a goof I was and waited for her mother. The next day the teacher asked if anyone had a problem getting the paperwork done. My little sweetie raised her hand and said her father wasn't allowed to do it because he is in the program. It's great when your kids have your sense of humor. That teacher always gave me a wide berth after that?

My latest thing is I woke up this morning with a pain in the side of my neck.(My wife wakes up with a pain in the neck every morning! Baroompa!) Obviously it's a blood clot caused by the MS. I still have the port in my chest from the chemotherapy. it must be leaking, or ready to explode. Will the surgeon be able to get it out today? Is this the price I pay for having not called her to take it out already? Why does this kind of thing always happen to me? That's when it happened! Dust from the construction process caused me to sneeze and boy did that hurt! I started sneezing last night, hey wait a minute! What did I say to myself lat night? I said self, remember that sneeze tomorrow when something hurts, because that was a doozy! Tragedy averted! Call off the paramedics! I told you I was OK. Sometimes you just have to sit and think these things through. All this typing makes my finger hurt, I wonder.....