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Posts Tagged ‘Raynaud’s’


What to do, what to do….

Hunny wants my docs (rheumies) to sign off on me running any kind of distance on concrete/pavement/anything without cushion. He is worried that I am going to hurt myself and that’s going to result in me going down for more than a few days. The last time he was insistent I not do something because he thought it was going to physically harm me (although it had nothing to do with running), I ended up in such bad shape that I nearly ended up in the hospital and in bed pretty solidly for two weeks.

My argument is that the mileage is fine (10k) and I’m prepared for that.  Worst case scenario, I could either walk or not finish if something happened.

He has a voice, of course, because when I’m incapacitated (as I was earlier this week), he’s the one picking up the pieces and filling in. He doesn’t mind when it’s a freak or unexpected thing, but when it’s something I’ve set out to do despite his reservations and it goes bad, he’s not a happy camper.

Tuesday I had a weird funky episode about 45 minutes after my run.  I haven’t ever had anything like that happen before, and I haven’t had anything similar since. I was really glad I wasn’t driving, to say the least. Tuesday pm was spent in bed; some of Wednesday pm was spent in bed; I spent all of yesterday pm in bed (and really crashed hard).

I cannot argue with the logic, and certainly, in light of this new thing on Tuesday, one can counter and say that there will be other races, yada yada yada.

Obviously, I’m disappointed. To not run now, when I’ve spent the last 3 weeks really focused on this, in many ways would feel like a cop-out (even though logically I know I have real health issues that I can’t ignore). I’m annoyed to feel like I’m chickening out and “using” my illnesses as an excuse to not enter something I know I’ll have an awful finish time in.  😆

Even though my time will be atrocious (as in, some of the 10k walkers will finish with better time), the whole point for me was to set a goal and go for it, even just to finish (and yes, I keep telling myself that, in hopes I will some day believe it- honestly, I have a competitive streak and I like to do well; but here again, I know where I’m at now). The next race I’d probably have better time and longer, focused training under my belt.

The next one on the schedule is in December, and I am not sure I can physically run in colder temps (because of my Raynaud’s), because I’m supposed to gear up and avoid cold as much as possible. I’d really rather not run a sustained purple/blue, and in good conscience, I cannot say that any extent of time without blood in one’s appendages is smart and worth the possible/probably outcome. I am certain that my docs will NOT be keen on a winter run.

In all reality, that run would be out, unless it was balmy and 50 degrees, which hey, might happen. Last year, that was during our cold snap, where we had a week of sub-zero temps, with highs around -11 and -14. That weather was a total oddity, though, and unlikely to ever happen again. Most likely, it’ll be 40s to 50s, which really is not very cold for normal folks.

If that thing on Tuesday hadn’t happened, I wouldn’t think twice. I would be confident with no reservations, unless my hip was still in bad shape like it was last week.

But that thing- honestly, it left me a little shaken and concerned (mostly because we haven’t ruled out a heart issue, too :roll:), and I can’t say it can/should be entirely disregarded. I’ve dealt with so many weird, one-time bizarre things it would make your head spin (like the one time I could walk for over an hour)- but that’s the point- they are one time things and then I never have another episode.

What to do…… what to do…… anybody ever dealt with this kind of situation?  Give me your two cents, please!

 

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Or maybe not. I don’t know. It may be too early to tell.

Remember that last post where I was saying my pain level hadn’t increased despite my mileage increase? And that I wanted to be careful not to get injured because that would be an excuse not to do the 10 k?

Ya, well, humph. Saturday I kinda sorta upped my mileage again, by 1/2 a mile.  And it felt ok, more or less. I was feeling the hip by the end, but it wasn’t killing me. Sunday I took off because I upped my mileage on Saturday and J wasn’t home in the morning to go roller-blading while I ran, so I had enough excuses to pass. And hey, since my hip was still a little sore, I thought it would be better to have a break.

Monday came. Hip still pretty sore. Had to stop (!!!!!!) while out after about the first mile, because the front part of my hip was getting tighter and tighter to the point where it darn near felt frozen. Stretched it out and it was bearable; no incline work, I said, until I got it sorted out.

Tuesday came. Hip still sore, but I took it slow, and while I did some incline work, it was 1/2 mile less (total; 1/4 mile each) and here again, I went really slow.

Oh. My. Stars. I napped in the afternoon, and by the time evening came, it was on constant throb. Now I have two points of pain. I’m thinking it’s the normal bursa pain and then new stuff I think is some kind of hip flexor/iliopsoas tendonitis. Achille’s tendon. Extensor tendonitis. Iliopsoas tendonitis.

Do you see the pattern?? Yes, I know, I am dense. When one has connective tissue disease (and since Raynaud’s is a symptom of mixed connective tissue disease), you never know what is going to go haywire next.

Anyhow. Hunny is convinced that the pain is the result of running on pavement. I think it’s probably the combination of increased mileage and being in a flare. In hindsight, when I woke up on Saturday with swollen eyes, I should have not increased my mileage, and just to be safe, I should have probably done my running indoors. And then Monday and Tuesday when they were still swollen-same thing. Meh.

I medicated last night so I could sleep. Pain is not as bad today, but it’s not good. I can do a bit more stretching without having my breath taken away, so that is good.  I think. We’ll see what tomorrow (and some additional targeted exercises and stretches) brings. I haven’t registered yet for the race, but I still really want to.

And the clock is ticking. The only other race on the horizon is in December, and I am not sure how running in the cold (because of my Raynaud’s) is going to play out.

But hey- the upside is that I did manage to find a cheap pair of sunglasses that I think will work. They are not terribly dark, but since I’m looking down much of the time, I think they will be ok.

So, bloggy friends who have dealt with this, please give me your two cents! Push on? Ditch the race this time?

The only thing I actually know is that I am headed for a nap right now.  😆

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Take a wild guess about what I’m griping about this time…..  😆  Ya, more shopping.  *sigh*

Normally, I am not real picky about stuff, nor the lack of it locally, with the exception of a few things. If I can’t find it locally, I’ll go online and order. No biggy.

Pants are generally one item (unless they are sweats) I won’t order online. Usually I won’t order shoes online, but since Vibram has a very clear video on sizing, I followed the directions and was able to order online with no issue.

The one item I cannot make an exception for and order online (unless it’s ridiculously cheap) is eyewear. For all practical purposes, this really means just sunglasses. Before I agree to wear something on my face, they have to fit. And they have to be dark.

Even though I have transition lenses in my eye glasses and I got the darkest ones they have available, they don’t tint darkly enough. The result is that I wear polarized sunglasses over my regular glasses.

Because of my Sjogren’s Disease, I have all kinds of issues with my eyes. The biggest issue is the recurrent cornea erosion. In a nutshell, this means that every time I blink (literally- every time), I stand a chance of my cornea sticking to my eyelid and ripping off. I’ve had this happen during the day, but the most critical time for me is before I open my eyes in the morning.

Over a year after the first episode, and after being in his office for “blips” at least once a month (but usually more), it finally came to a head when, after going in to see my eye guy 4 times in a single day, his daughter called him out of a meeting around 7 pm at night (even though I had seen him a few hours earlier before the office closed) and he met me down at his office.

The determination was that there was no way my cornea would last for a 200 mile emergency drive to have a stromal puncture done. This dealy is where they take a needle and poke it in all over your cornea, which helps the epithelial cells grow “feet” an attach into the deeper layer, and thereby, encourage healing.

I didn’t have that kind of time, though. At that point, my entire cornea was filled will fluid and was mushy; rolling around in my eye and ready to rip the whole thing (including the deeper layers) off. Ya, not good. Waaaaaaaaaaaaaaaayyyyyy more painful than unmedicated childbirth.

The only viable option we had was to have him use a scalpel and scrape that top layer off. I am not exaggerating when I say that that man saved the sight in that eye. After the eye got to the point where we could take some time with it, we decided to try a more permanent solution.

I have punctal plugs in both eyes. Yep. For a fact I can say I have silicone implants.  😆

On my left eye, we started with top and so far, several years later, it’s ok. In the right eye, I have plugs in both the top and bottom ducts. He had never done top and bottom on anyone before (and none since as far as I know), and he has been doing them for years and years in a desert climate where a lot of people take advantage of this procedure.

Now we know it was the Sjogren’s that caused the problem. At the time, we were stumped, and thinking it was leftover from autoimmune disease. Turns out, it never left. At one point, at the annual state-wide convention, I was one of the case studies, and they were trying to figure out how to heal my eye and get it to stick.

Now having this information, it should come as no surprise as to the why my eyewear is so important. I’ve spent several years (and a chunk of change) trying not to go blind. Having proper eye wear is critically important to me.

I can’t leave the sides exposed; wind can go across, dry out my cornea quickly; I blink, and there it goes.  Something gets in there? Scratch, and there it goes. My eyes don’t heal normally. This kind of injury usually repairs quickly- the cornea has the fastest healing tissue in the body. Two of my kids have had scratched corneas, and by the next morning, they were more or less back to normal. Me?  I’d be a week out and still have a grossly swollen eye, sitting in the dark, trying to de-juice my cornea.

The Sjogren’s also leaves me highly sensitive to light. Bright light is extremely painful. Glare is painful. So don’t go yelling at me to take off my glasses just because you want a picture without tinted glasses in it!

Anyhow. I gots ta try ’em on. They gots ta fit. They gots ta fit right.

And I’m annoyed that I can’t find anything but $100+ glasses locally. Honestly, the eyes/glasses situation is one of the biggest reasons I run indoors. Now that my oldest dd is going to run with me, the dreaded shopping has begun. Still, because of the house gremlin running around here, I don’t feel like I can spend that kind of $$$ on something that may get taken before I even get to wear them for the first time. See the dilemma?

I think, before I invest in glasses, I will try to find an old pair and hope they don’t bruise my nose. Then, if being outside doesn’t kill me (like hunny thinks it will), I’ll be in a better frame of mind to think about finding the right ones.

Next, I’ll have to think about gloves and arm warmers for my Raynaud’s……. 😆

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