Update

Just wanted to mention that I’ve been having problems with dizziness in the morning, for about the first half hour after I wake up. Also, just today, I’m having that headache that used to happen when I would touch my chin to my chest, pre-surgery. The headache goes away a few minutes after raising my head back up. It’s slightly annoying, but no big deal. I’d like to remind everyone that the nature of MS for most people is to have ups and downs, so please don’t get worried if I’m having temporary symptoms (Mom and Dad!) Personally, I’m not obsessing over it.

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Update

Hi All. Happy New Year!
Please excuse me as I use this post to vent a bit. My two remaining MS symptoms are driving me CRAZY!!
1. Muscle spasms/nerve pain have been worse in the last few days, but increasing the medicine for them hasn’t helped. I don’t know if I’m fighting a cold again and if that’s why things are flaring up. But it sure doesn’t help my sleep anyway, and it still takes about three to four hours before my body stops feeling stiff in the morning, and feels awake. This is even with stretching, joint supplements, coffee, etc.
2. My archnemesis- having to run to the bathroom all the time!! I’m still getting up three to five times a night. And, having to go several times during the day, often several times in a row because I just can’t empty all at once. And when I have to go, it’s really urgent. Sometimes just standing up makes me have to run to the bathroom. Changes in temperature definitely make me have to run to the bathroom. I think I must go 20-25 times daily, which I assume is way above average, right? I still have to get the three tests at the Urologist’s office. I am so impatient to be on treatment. I never realized how much the bathroom issues affect me, because I used to be consumed by much bigger things to deal with, and I also wasn’t putting out nearly as much energy as I do on a daily basis now (I think I must literally put out 5-8 times more energy a day). So the same issues are becoming more of an obstacle. Having to run from the couch to the bathroom is one thing, but having to find a bathroom while running errands, which I have energy for now, is much more frustrating. Sometimes I have to go to a bathroom in every store I’m in.

Well, I realize I’m one of the luckiest people on this whole earth, with all I have in my life, so if I have to be stuck with symptoms, I certainly think these are some of the most benign ones. But, it’s just my nature to constantly want to make things work better, especially when they’re things that cause upset or discomfort or embarrassment. So I’ll keep looking for answers…

On another topic, I decided I really cannot afford personal training. I took a pay cut with my new job- which is great because I’m so much happier, but it does mean I really cannot be thinking about PT! I’ll have to try and carve out a Saturday morning workout involving weights. If anyone local wants a Saturday morning workout buddy, just let me know. We could try it for a couple weeks and see how it goes.

My body still isn’t very strong- I haven’t exercised a lot this year- just stepping up my life functions has been enough exercise. All I do is stretch daily, and then walk my dog for 10 minutes a night.

Lost weight and dieting

I lost 10 pounds, and I have to say that my special diet has made me have to use the bathroom even more than before, if that was possible :). My pain, stiffness, and muscle spasms also have not decreased. But, the diet has had two great benefits- I’ve had no fatigue or day time tiredness, except what comes from having pain and poor sleep at night. I have several sources of tiredness so I’m glad that I cut out the source which is certain types of food.

I’m guessing I have to lose another 10 pounds before I notice a different in the quality of sleep, and the energy that comes from just weighing less.

I also visited the Urologist the other day, and he’s going to run three uncomfortable tests over the next few weeks so he can determine the appropriate medicine for bladder retention and inability to empty.

My next step of lifestyle changes is to start exercising again (I needed more energy first before I could take this on). Maybe I’d start in on personal training again in the new year– but I would need to save up for that a bit first. If anyone local would want to share personal training at Coach Me Fit with me, please holler!

It’s My Surgi-versary!

It has been one year since I got treated. For all the random cynics out there who had no interest in MS patients’ health but just blasted the procedure while acting like they had patients’ best interest in mind…. I say “nyah nyah nyah nyah nyah”! (Note- this is VERY different from caring friends who actually just wanted me to be safe and were skeptical of the procedure- there were several of these folks- and I love them and appreciate their concern and thoughts about the procedure.)

Anyway, I think after one year, my total percentage of symptoms gone is 80%. It kept staying at 80% even as more things would go away, because I would keep realizing I had further to go than I thought I did.

I went out with a group of friends last night to celebrate the surgi-versary (organized by my sweet husband) and it was really fun. A year ago there’s no way I’d have had enough energy to go out with so many people for a whole evening (too many people was too overstimulating), and then we walked around downtown together- something I haven’t done with a group of people after dinner in about eight years. It was so fun. MS has really taught me the value of friendship, and I also read an article the other day about how “not keeping up with friendships” is one of peoples’ top 5 regrets on their deathbeds. I’m so glad I keep up with them better than I used to.

I’m guessing I’ll be forced to get an MRI soon- I just HATE MRIs- the late night, the injection, the claustrophobic tube, the loud noises and not being able to see anything and wearing earplugs. I’m not planning to remind any of my docs that I need one.

Weight Loss- next step

Hi All- Part of me hates to write this post, because it really bothers me how the US is SO uptight about weight- I really think this country’s obsession with weight CAUSES health problems for so many people- especially women. The obsession is so pervasive that we don’t realize we have it, and that we don’t need to have all the emotional upset around weight and food issues. I believe that the danger of “weight shame” manifests as physical and even “weight-related” illnesses. Did you know that African-American women are on average heavier than white women, but they have (or did as of 1990) less weight- related illnesses? I think this is because being heavy is more accepted in the African-American community. I don’t know if that stat is still true today, or if weight shame has invaded that group of people more now.

That being said, I have been in my job for six months, my recovery is almost at one year, and I decided this is the right time to do a special diet (I shall called it the X Diet- I don’t want feedback on my dietary choice from people). I’m ALWAYS on a diet in that I don’t generally eat sugar, starch, or grain. I’ve been doing this for nine years and I’m quite sure the MS would’ve been MUCH worse had I not done the diet. But now I’m trying a prescribed diet that works with my regular guidelines.

I have done the X diet before, and I remember the very high level of energy I felt while on it, even before I lost weight. My job is so demanding that I really could use something to boost energy, sleep better, etc.

I still have the muscle spasms and nerve pain, and they really really tire me out, make it hard to sleep, and put limits on my energy. Hopefully I can make up for this energy loss by doing a diet that I know boosts my energy.

I’m also going to see a urologist about how I have to go to the bathroom so many times a day. I have an awesome new doctor (FYI- she’s taking new patients if you’re interested!) and she actually is interested in helping me sleep well at night- she’s not just into responding to immediate symptoms. She suggested going to the urologist, and trying to get at what is behind my urinary issues (they’re ms related, that’s for sure- but I’m unsure of the details of why). So I hope to be on a drug that can help these issues. Now I’m putting out as much energy as a normal person every day (yay!) so darn it, I want to be sleeping like a normal person!!

I only get like one really refreshing sleep a year, if that. I was telling a co-worker about getting up 3-7 times a night to go to the bathroom, and she was like “wow, that’s like having a newborn!!”

I will keep you posted on what I’m noticing with the weight loss– how it affects my sleep, energy, and bathroom issues (I hear this diet can make some people have to go less times a day). And, I’ll keep you posted if I start on a drug, and how that goes.

I will be happy to have a diet that just tells me what to eat, so I don’t have to think through what to choose for a meal, every time I need to eat (since I have to choose non-sugar, non-starch, non-grain items).

The challenge with Diet X will be trying to plan in advance for every possible situation where there could be temptations or I could be away from home and hungry. Especially in a workplace like mine where there are SO many offerings of free and delicious meals for one reason or another… Not much prepared food fits the diet, so I guess I’ll be cooking a lot in the next few months… 🙂

How to Get Treated for CCSVI

A CCSVI activist posted a video on how to get treated. I have to admit that I haven’t watched the whole thing, but I trust this woman and her videos, so I feel comfortable posting this. Click here. It’s the video that is first and foremost on the left when you open the page.

I’ve Cut My Muscle Spasm Meds in Half over 11 Months

So, I used to take 12mg. of muscle relaxants, and now I take 6- this is a huge difference to me, and I’m so grateful that my muscle spasms are going away. I suspect it’s a combination of things:
– Time- it just takes time for the MS symptoms to decrease
– Potassium supplements, Magnesium supplements, and several different supplements from Springtime Inc.
– Being a lot happier in life

Of course, now I’m realizing certain things that I thought were connected to muscle spasms actually aren’t. I still have pain all day/every day, and all night. Nerve pain, muscle pain, etc. I think my very bad TMJ is part of it. Also, I think having to go to the bathroom so many times and resisting getting up to go causes muscle tension for me.

Anyway, I’m very happy about it! Less muscle spasm meds. means much less muscle weakness at night and in general. The med makes your muscles kind of flop around- you can’t hold them tensed.

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