Lilan's hot date

[Lilan]

Thanks everyone!

Computer: I'm using the term "work" a bit loosely. She is working on family geneaology stuff and was hoping to use some downtime to transcribe documents relating to that. So it's not like work-type of deadlines or whatnot and Internet access is not so crucial, it's more the word processing side of things.

Blood: Yes, I will donate blood because of it being a hemangioma, aka blood vessel tumor. They still feel they hopefully won't need it, but they are having me donate one unit of whole blood just in case. This has a shorter shelf life than red blood cells, so I donate May 29. I am not crazy about doing it so close to surgery, but I would certainly rather have it available if I need it!

Exercise: I am so exhausted and dizzy it's been hard to do much, but I have been using the elliptical machine and light weights at my gym at least once a week on the weekend, more if I can take a day off work at some point, as I have some weeks. That way I can clutch the sides of the machine to brace myself.  Walking is not comfortable for me right now, though I do walk my dogs every day and with both of them pulling in different directions, it's indeed a challenge to my vestibular system -- if not the most grueling cardio workout at their pace Now that the weather is nicer I am forcing myself to do some more walking outside, but it's difficult. If I break my gaze, I get a very dizzy head rush.

Which at least confirms my decision to have surgery. Can't go on like this!

[Lilan]

Tomorrow morning I donate blood    and am hoping it doesn't make me dizzy! (Though how would I tell at this point anyway?)    I took the day off work so I can just relax afterward if necessary.

They told me not to have caffeine before donating; needless to say, I said that was NOT going to be an option    but I did promise to drink extra water to make up for it!

I have been extremely dizzy all week, and today my ear was beeping at me -- a distinct, electronic beep! It's as if my acoustic nerve is paging me for help.      The poor thing.

So, I'm not (mentally) fighting the idea of surgery as much as I probably would be at the two-week mark if I were feeling OK! Two weeks from right this minute I will be a postie!

[leapyrtwins]

Lilan -

I hope the next two weeks go quickly - and that the surgery puts an end to your extreme dizziness

I'm a regular blood donor (every 8 weeks for many, many years) and the reasoning behind the caffeine is because it actually slows down the flow of the blood.  While liquids are important, water is the beverage of choice.  Being well hydrated is key; caffeine tends to have the opposite effect.

Jan

[Lilan]

Thanks, Jan! I am trying to just sip a tiny amount of coffee this morning (just enough to fend off a headache), offset by a huge glass of water! I also cut down on caff for the last few days and added extra water.

I admire you for giving blood so often!

Thanks also for the good wishes.

[Lilan]

Well, the deed is done!

At first no blood was flowing -- after several minutes, zero! I thought of Jan's post and felt a stab of guilt over the 1/4 cup of coffee I'd had this morning!


But then they adjusted something and I was done 8 minutes later, so all was very well. I don't even feel any dizzier than usual. 

[leapyrtwins]

Sometimes they have to adjust the needle because it can be up against the wall of the vein.  Once they move it, it allows the blood to flow freely through the vein.

So, don't lose any sleep over the coffee 

[Lilan]

Wow, do I feel lousy. 

Whatever thread I was hanging by seems to have been clipped with the blood donation! I think a combo of the physical and the mental -- entering the last week before surgery. It's definitely at least part physical though -- I'm significantly dizzier, don't think it's just short-timer's syndrome. In fact, I was going to enjoy this weekend and instead wound up on the sofa for three days (and left work hours early today -- just couldn't keep upright and my eyes focused).

Must.get.this.thing.out.of.my.head. 

[Lilan]

Also I can't take Advil now, this close to surgery (I stopped a little early, last week). I wonder if that had been keeping the inflammation at bay somewhat. When I did a course of steroids followed by high-dose ibuprofen it helped a LOT -- even got rid of my dizziness for several months -- so even the regular Advil that I was taking probably five days a week was probably helping at least a little, and now I'm noticing the loss of it.

[leapyrtwins]

Lilan -

sorry you are feeling lousy    I don't know if it's related to giving blood or not.  Did they tell you to drink lots of extra fluids after donating to replenish the blood that they took?  Also to avoid alcohol, smoking, and caffeine - if you partake in any of them - and not to do any heavy lifting or strenous exercise for at least 12 hours.  In addition, it's important to eat regular meals.

If what you are experiencing is directly related to your hemangioma than it's a good thing your surgery is fast approaching.  I'm hopeful you'll get some relief post op.

Hang in there,

Jan

[Lilan]

I did all those things (water, almost no caff, regular meals, iron supplements, I don't smoke or drink, or lift anything heavier than a pug    generally.)

Dr. Hain did tell me that basically anything that had dizziness as a possible side effect (as blood donation does) would be a problem for me because I just can't compensate for it right now. So I'm guessing it's a constellation of things: steroids have long since worn off, no more Advil, blood loss, barometric pressure changes the last week or so that make my middle ear go whack ... and perhaps the stress of impending brain surgery?   

Mostly I do think it's physical, that lively little bugger in my head. I suppose that's why hemangiomas cause more symptoms at smaller sizes -- they are actively gurgling and burbling all the time, especially with any change in conditions, torturing my little nerves. I almost cried yesterday thinking it was two more weeks till surgery, then realized it was only really one week, 10 days, now 9 -- if you had told me last summer I'd be counting down the days in anticipation, I would never have believed you.... In addition to all the problems it causes, the thing itself feels like an itch I can't scratch -- driving me crazy!

Thanks for keeping up with me, Jan! I will be fine, am just a little nervous about getting everything done/organized if I feel this way all week. But then again, the big things are already done, and if I can't "fall down on the job" at work or at home the week before brain surgery, when can I? 

[leapyrtwins]

The time period between booking your surgery and actually having the procedure can definitely be nerve wracking.

I'm confident that things will turn out great for you and that you'll get through this with flying colors! 

Will you have a scribe, someone to update us on your surgery and recovery, until the time you are able to return to the Forum?

[moe]

Must.get.this.thing.out.of.my.head.  

I like that. Hang in there. 9 days counting down.........I'm sure that's the only thing on your mind right now.......
You're in survival mode I can tell....... and you will feel soooo much better when it's gone.   I kind of remember thinking those words at the end of my pregnancies.

Must.get.this.thing.out.of.my.belly.
 

One day at a time for the next 9 days ( or one minute/hour at a time). You're in the single digits now!
Maureen

[Lilan]

Jan, I'd be happy to make you "scribe" if you can PM me an e-mail address! I have a friend who will send bulletins, and I can put you on that list.

Moe, thanks! I must say as opposed as I was theoretically to surgery, now I kind of see why it was invented -- sometimes a bad, bothersome thing just needs to be cut out! Having a 1 oz. (??) tumor driving me this crazy, I can only imagine how I'd react to an 8 lb. human being in my body!

Though at least her or she wouldn't be on my vestibular nerve! 

I do feel slightly better today, thank heavens -- at least functional again!

[leapyrtwins]

Lilan -

that would be great.

If you access my user profile, you'll find my email address there.

Thanks,

Jan   

[Jeepers]

Hi Lilan,

Been gone from here the last week or so, but was thinking about you this morning. When are you leaving for CA? I'm sure you're nervous. Hang in there, kiddo  ... we're all sending good vibes.

Jeepers