Early Morning Musings

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#1

Early Morning Musings

It is 3:00 AM on May 14, 2013. I have slept little this morning perhaps no more than 15 to 20 minutes. The reason for my lack of sleep is a small surgical procedure that will take place at 7:30 AM this morning. I am not really concerned about it. But I am watching my blood sugar like a hawk since I cannot eat or drink after midnight. So if I go low I am in trouble and if I got high, the doctor said he cannot do the procedure. It is difficult to hit the perfect balancing point for a type 1 whose blood sugar can swing 100 points in less than 30 minutes. Hence the blood sugar watch.

So I thought I would try to explain why I find myself in this position. As a simple explanation, I have a disease called Ankylosing Spondylitis (AS) and or arthritis of the spine. Like my Type 1 diabetes and Rheumatoid Arthritis (RA), AS is an autoimmune disease. Do not worry if you have never heard of it. I never heard of it until a few years ago when I was complaining to the doctor about back issues. I told him it hurt like crazy and my lean forward was getting worse. That is when my rheumatologist said, well you know. (I hate it when he says well you know) I bet you have AS. I was like AS!! What the heck is AS (trust me I cleaned that up).

I was sent to have a CRT of my back and then Xrays ns some blood tests and within a few days I received the news, I had AS. The Xrays are pretty shocking. If you look at my spine the membrane between the vertebrae is as dark as can be in the diseased areas. Then if one looks at the area outside of the AS affected spinal section, the membrane between the vertebrae is white. This white / dark dichotomy represents the diseased, non-diseased areas. The white part is normal; the dark is a reflection of the AS in action.

AS is often called arthritis of the spine, it represents the area where the vertebrae are being fused. It is like the development of brittle bone area that replaces the normal spinal anatomy. This disease is sometimes called Bamboo Spine. A brittle yet bone like formation between the disks. The disease usually makes the patient bend forward, as if the sufferer is bent forward into the wind.

One major trait is that I have this unnatural bend forward. My mother used to complain that I needed to stand up straight instead of bending forward. No one had any idea then that cause of this bending forward was the result of this disease.

The procedure I am having today is to interrupt the pain signal being transmitted by the nerves near the site of the AS. There really is not cure for this disease, one takes pain pills that really do not work well and you wait for the big gust of wind that makes this bend look normal. I tease my doctors that with three autoimmune diseases, I want to find 5 before I depart this earth. I tease that three autoimmune diseases seems so inadequate. I am teasing of course, one is of these autoimmune diseases is more than enough. I am so sick of having chronic diseases. I think I have chronic, chronic disease melt down. Actually it is just a pain in the butt, yet it is what is and most days you just go along. That is until you cannot go along so well.

So here I am today. I sit here waiting for dawn, 7:00 AM to be exact so I can go off and get some of my nerves blocked and that way I can go forward a bit longer. In the end I tell my doctors I need a broom handle inserted in my spine so it will straighten up. Of course one cannot do that, but I tell you I am ready to try it out.

So wish me luck, this is not a big deal, it will either relieve some of the issues for a bit or it won’t. It is a simple outpatient procedure and in a couple of days I will be out riding my tricycle. (Yes I pedal a tricycle) this will not go away, hopefully it will get better, it hurts badly now so it might get better soon.

Wish me luck, but don’t worry, it will be over in a flash and if it works it will be great. If not, well I can still bend forward and look for the gusting head wind. Here is a Wikipedia reference to the information about the disease. I’ll be the first to admit, I wish I had never head of this mess.

http://en.wikipedia.org/wiki/Ankylosing_spondylitis

-30-

Rick

#2

Hi Rick. Good luck! I'm wishing you the best of all possible outcomes.

#3

I made it home and am a little drugged up, a little sore and lot happy to be here. Thanks for the kind note.

#4

hugs Rick, glad you're home!

#5

Sounds like it went smoothly. Hope it does what it's meant to do and does it well. Take care!

#6

I'm glad it went well Rick, now lets pray it has the desired effect.

#7

Hi Dr. Rick...a Big Congrats btw. :)

I do not hate much but I hate RA and Osteo AND now AS. I didn't know that can happen with AS too. It does happen with Osteoporosis. I have OA in my lower back and Osteopenia in my hip from steroids for RA.

Will you be getting a back brace? I have been looking for one recently to help keep my back straighter. It can't hurt.

Glad to hear that your appt went well. I really hope that this will relieve your back pain, so that you can continue moving forward. Love reading your blogs. Keep them coming.

#8

Hey Terre'

Good to hear form you and thanks for the kind words about my blogging. No back brace as yet. Perhaps a hammer to fix things. My sense is that if this intervention does not work, the docs will call it quits and say look, stand it as long as you can and if you cant, then they will try another nerve block intervention. I mean it is going down hill so fat, I don't think my guy holds much hope for anything. Sort like throwing Hail Mary's and expecting the other to score a touchdown. I suspect that at some point this will be the one that will get me to a wheel chair. Gotta love those docs!!

How are you Terre', I worry about you more than I worry about me.

Rick

#9

Hey Rick:

There's your problem. You're using a hammer while I've been using glue. :D

Gee, it would be nice if your Dr. could put a bit of a positive spin on the intervention. Damn!! I can't believe that is happening and like you say so fast.
When was the last time that you had a back exray before?

I think you and I got caught up in the same cyber hole. My back was feeling a bit uncomfortable once in a while but nothing to write home about until I tried to get out of bed one morning and I had a severe pain across my midback which continued. Went directly to my Dr. and turned out I had deterioration from OA. Normally, if I had joint pain, I'd get an exray, ultra sound, etc. I've had OA about 6 or 7 years. I've lost 1" off my height. I used to be able to crawl under a chair. Now I can crawl under a turtle. ;) Yay!

So, is the Rituxan and MTX still working for you at least?? That would be a plus.
As usual, these biologics don't work for me. My Dr. took me off the MTX and the Rituxan infusions. I'm on my NSAID, painkillers,and he doubled my Pred. dose for one month. I feel good but I know the Pred. is just causing me more damage. What can you do? I've been washing everything, vaccuming, painting, planting, throwing out stuff, etc. Trying to get everything done(impossible) before he lowers the Pred. and then I will be in the usual too much pain and fatigue to do the whole work load. You know how that goes.

I've been using my sexy cane when I need it. Phil got me a walker with wheels. I've only needed it 3 times. A friend of ours died a while back and the family offered her power chair to me which was very nice of them. I can't stand the thought of sitting in it though. Our Tud Friend Sandy(Saundra) and I made a pact never to need/use a wheel chair. She did meed one in the end and I guess I'll have to eventually follow her lead. It could be worse, I guess. At least, you and I could still get around. Of course, if I ever see you on my sidewalk, I'll run you over just for old time sake. OKay? :D

#10

Terrie:

I had such a good laugh reading you note. It is such fun to think of you dusting up the house while on Pred. How in the world do you use that stuff. Man I turn on some pred and my sugar goes up the wall and over the fence. I admire your effort.

Yes the rituxan is working I mean so far. I had to shorten my schedule to the minimum 4 months. My hands hurt so badly even two months in. Now that sexy cane, mine is blue but i am not using it these days, Now I might want to use it if as i suspect my future is a power chair. At least at some point.

only 1 ", slacker,, I am down 3 inches. of course it is all because I am bent forward at about 20%. i tell people I am leaning into the wind. LOL

Ill tell you what we will both resolve to to stay out of the wheel chair. we will do a tag team and resolve we wont use one. I mean until we have too. We can say ill not get not get in one until we just have too. What do you say, non wheel chair Bubbies? I mean except for the thing you speak of in Chicago,

until theh,

Rick

#11

Right on! Good to see ya smile Rick. :)

Oh thanks a bunch for mentioning that Dr. Rick. I haven't done the dusting yet. Totally forgot. More work! Be right back..........................:P Whew!

Well, Phil works all day, tries to repair everything he can get his paws on, carries me down the stairs in the morning sometimes and dumps me on the couch when I can barely move, combs my hair when I can't do it, gets my battery running(in the power chair which I haven't used yet)and much more. He doesn't seem to mind. So the least I can do is my Best for him in any way that I can.

As far as the Pred., I am not on the 30 or 40 dose. That's a killer. He didn't want my sugars too difficult to control. I'm on the 20mg dose which covers most of my pain. My joints still hurt a bit but this is heaven compared to the norm.

I eat low carb for the most part, of course. I can exercise more and dance again. I take half of the Pred. in the morning and half in the evening which cuts some of the highs. I add 5 units to my regular basel dose in the am, take extra Humalog with each injection during the day and 2 extra basel units with my evening shot. More testing. Lots of unsweetened liquids as usual during the day.

I'm very happy that the Rituxan is working for you. Finally..something. I do hope that it keeps you feeling better for much longer. Ya, many RAers seem to have that 4 month period problem. Christine took the 5 month dose and others just stay in pain for 2 months since they say it's only for 6 month intervals. IDK! It didn't work at all for me.

Your 3" don't count then. Your a leaner. When I stand straight...I am an inch
shorter. My aunt is like you. She used to be 5'7" but she's 5'2" cuz she's leaning. When she stands straight, she's taller. (You Guys better not spit in the wind).

Okay! Power chair Buddies except for the times during the summer when I may want to go shopping. I'm female don't forget. I don't know if I have the nerve but Phil has that thing repaired, charged and ready to go. Hate to disappoint.

#12

Ok, I am not going shopping except on QVC and then only for computers. Ok, I might buy a hammer or something like that. Yeah, like I need a hammer. The best hey tell your retuxian buddies that the turn is 6 mos suggested, but 4 months min. I swear it to be true.

hahaha, no one is carrying me anywhere. Even my sons look at me funny when I ask them to carry me around. They just say ahh no. I like the idea of splitting the low does of Pred. If I need to go on it again I will do that. When i pop a Pred, my BS goes to like 10 million and I chase it with insulin and well it never comes down, not really.

#13

Ok, I am not going shopping except on QVC and then only for computers.

Hmmm, I do hope that you will not be wearing that same old suit and shoes for your first day on the new job. What will the doorman say?? 8P Very Good luck on your job hunt Rick. :)

Okay...okay, stop swearing. I'll tell them then, if you are sure.

The smaller doses 1-8 mgs I can control, so it doesn't bother me much but over that I notice it. I also noticed that the 20mgs. sneaks up on me and stabs me in the back when I least expect it, so I take more Insulin ahead of time to try and keep it under half decent control. My appetite has gotten better but as of 4 days ago, I haven't gained an ounce. I was hoping. I should weigh again today. 20 days on 20 pred today. Like I said 30 and 40 mgs kills me everyday. I'm so glad that he didn't put me on those amounts again.