I don’t like that I’m so inconsistent in my blogging here. My intentions were good when I created this blog. They remained good throughout the years even. But I just can’t seem to get to it on THIS blog.
I started out with three blogs (on three different locations). My purpose for each blog was not clear…to me. I thought I’d had a plan in my mind, but I really didn’t. I’d hoped that in time it’d just work out and I’d figure it out. It hasn’t happened. Yet.
What mainly keeps me linked to this blog is that every once in a while I receive comments that touch my heart, inspire me, or plain old get my attention. Last November I made friends with a wonderful lady who had commented. We send emails back-and-forth periodically (she’s better at it than me). (NOTE TO SELF: I need to not only write her, but get pictures together and send her a package. Maybe I can accomplish this by July.)
I also receive a load of spam associated with it. Comments do not show unless I approve them. There are options for the comments to approve, trash, or assign as spam. For some reason, I suddenly started receiving lots of spam comments. Over the years I’d accumulated over 1500 spammed comments. For some reason I deleted them. I think I opened the gates for those spammers to spam me again. Perhaps in time the spam will once again slow down…once I respam the spammers. *sigh* I don’t even understand what the purpose is for spammers, but they must be really sorry people/groups.
Anyway — here is my first offical post for 2012. Thus far my MM is remaining dormant. I am not taking Revlimid or any other treatment for it. As I explained in previous posts, my doctor told me that the current regimen is to place MM patients in partial remissions as I am in, on a maintenance dosage. It’d probably be Revlimid and I don’t know if it’d include a steroid or anything else. Since I’ve maintained very well without it for over four years, he’s leaving well enough alone.
Again, as I’ve stated in previous posts, I do have spinal cord damage and have major issues with it. The tumor I’d had at my T8 caused my spinal cord to atrophy. I don’t function well from about the waist on down. That includes walking and even moving my legs and feet, let alone eliminating (urinating and bowel functioning). With not functioning well comes extreme discomfort and pain. There’s a difference between the two and one is not any easier to cope with than the other. That might be a good topic for another entry in that maybe I can reach another individual dealing with the same thing.
While frankly I hate having to deal with this spinal cord damage because of the pain and discomfort, I think just as challenging for me is that I do not know of one other individual in the same predicament as me: MM’r in partial remission & doing fairly good but has spinal cord damage with similar effects as me. As weird as it sounds, I envy women who get breast cancer as opposed to this. They at least have common issues and can bond. They can relate with what the other women are experiencing. Even other people with MM seem to have much in common. At least it seems that way to me. I’ve not come across another individual who got MM, went into a partial remission and doing relatively well considering the MM progression–but then have to deal with the crippling & demobilizing effects of damage to the spine. My spinal cord damage does seem to be getting worse, too, which is a little alarming to me. I get around, drive to the store and to most doctor appointments, and such – but it is difficult. And it’s getting more difficult. But I still can do it. It would be so helpful to talk to another in the same predicament.
I’ve checked out support groups, asked the nurse practitioners, doctors, and other medical personnel I come in contact with if they knew of one, but to no success. I haven’t tried in a while, so it may be time to search some more.
I do belong to a MM support group and I highly recommend anyone with MM to find one. The one in my area is a great group. They have bbq’s and special meetings throughout the year and are supportive of each other. Over the years I’ve lost contact with them. It’s weird I say this as I don’t attend the meetings – but I am on their mailing list. It’s like I’m a lurker…lol. They’ve just started sending out meeting minutes. I had attended only a few meetings at the start but discontinued when I started having problems getting around. They are about an hour’s drive away and in the depths of the city. Last I attended they are on an upper floor but I do recall there is an elevator. I’m not sure I have the physical strength to first make the drive, then make the walk to the meeting room, then have the stamina to endure the meeting and make it back home. This is something I should reconsider. Perhaps during the nice summer weather I can try to attend a meeting and get reacquainted. If there is another in my personal predicament, by being an active participant in the group would be a way meet them.
I need to try to muster the courage and the strength to perhaps give one of those meetings a try. But I also must have the wisdom not to bite off more than I can chew. As I type this I know that it’s not feasible for me to drive that far to a meeting – as good as it would be for me. I will still ponder it to make sure it absolutely is not feasible…that I’m not wimping out. Sometimes I get myself in trouble when I’m afraid I’m being a wimp and I get myself out on a limb I have no business being on.
This post is disorganized. There’s really no central theme or point in it, is there? Well, I guess I did touch base.
I plan on writing again, perhaps one entry to focus on just where I am in my mobility or lack of. It will either be helpful to another with similar symptoms OR I may meet someone with whom we can share our ideas and what works for us.
Also, I will post pics of my patio. As I’d mentioned in an earlier post, I planned on enjoying my patio this summer. I’ve been sensing that I am slowly getting worse in this spinal cord damage. I don’t even want to admit it, but I suspect I will eventually be wheelchair bound. *sigh* In the meantime, I am going to do as much as I can to enjoy what independence I have left. That stated, I planted lots of flowers and veggie stuff. My patio is full of various potted plants. I got that new umbrella I needed. I love it. In another post I will not only describe my patio but I hope to post pictures of it. But I will inform that I have four different tomato plants (all with tomatoes on them already), four green pepper plants (one with two nice sized peppers already!), herbs of thyme, rosemary, cilantro, & parsley, and spinach. Then I have violas, impatients, gerbara daisies, another kind of purplish-white daisy, and some other lovely flowers that I forgot the name. I’ll list all that in the post.
Until next entry….hopefully in a timely manner…God bless!