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Posted

;) My heartfelt thanks to ever single person who wrote a post to me, sent me an email, or thought a nice thougth on my behalf. I think I've stepped back on level ground, despite a very hard day.

My happy attitude is definitely BACK. I find myself smiling more :P here an in real life (perhaps it's the new tooth :rolleyes: as referred to in Dino's post... probably not ... I think the steroid are FINALLY out of my system. After getting my period last week (sorry to the squeamish among us), I felt better, and a little better every day. Today is my first day that I feel back to MY normal.

So, here's what's been going on, that I've been remiss in posting about. I had my MRI of the brain, with and without contrast. The staff couldn't have been nicer, but unfortunately, when they gave me the contrast, the vein leaked (those darned stretchy veins I have from EDS!!!), and I got a big mass of contrast fluid infiltrating my tissue. It stung like *&^#@@!! and the lady kept apologizing put had to keep going.

Before moving me back into the scanner, she got me a hot pack and taped it to the area. By the time she finished the last bit of tape, my vein was spasming like crazy and my arm was burning. She gave me a chance to bail out, but I said I could deal with it and let's just get it done, we have less than 5 minutes left. Wow, was that a looooooong five minutes! I was in agony--and kept taking to myself in my head that "I can get through this".... When I was done, I was sick with the pain and wanted to puke. I asked for an ice pack, had her tape it to my arm, and it really helped but I was still feeling really funky--the big adrenaline rush hit me, the sweats, the queasies, you know the drill.

Managed to get to my car, and drive to grad school, park and walk to the nearest food truck (aka 'roach coach') and get some well salted scrambled eggs, a big iced tea (the caffiene increases my bp) and a nice big sports drink for back up. Walked the few more feet to my school building, took the elevator (thank heavens it was working today) and made it to my class. Freaked my professor out cause I was so sweaty and alternating between pale and red faced. She asked if she could call anyone for me... such a nice lady. :) Those eggs and fluids did the trick and I was able to do my final presentation (50% of my grade). Done with class for this term!!! Whoo Hoo!

I also turned in my teaching apprenticeship work, on video, which was 6 credits (2 full semesters). yeee hah!

Now I only have two conferences to get through in the next 3 weeks, and that's the last of the major stress until September. My elementary schools end in Late June, so I have about 6 weeks ahead. Long rest is in sight!

Oh, btw, I did tick off ANOTHER item from my "to do list", which is schedule my EEG. I get the films from my MRI tomorrow or Thrus, they'll call to let me know when they are ready.

So, that's the update for now. Thanks for sticking with me when I was out of view, underground. I'm reaching my hand in to give you a help up, if you're ready. If not, I'll do what I can from up here, and I'll wait.

Love to you all. Nina

Posted

What a climactic finale out of the POTS hole! You are indeed amazing. I don't think I would have been able to finish the MRI and I'm certain I would not have managed back into a car and continued on with the rest of my day.

You are an inspiration to all of us! Thank you so much for sharing.

Good luck on your results tomorrow.

EM

Guest Julia59
Posted

I'm glad you were able to make it out of the hole Nina.........

I'm also glad to hear your work load will be less now as this will lesson the stress.

You know how stress is for us--------- :rolleyes: That MRI---how did you ever do it? Going to class right after----well sometimes there is not much of a choice is there.

I'm just glad to hear you made it though all this and came out OK.

I had an MRI today---but I wouldn't have the contrast, because I am afraid of what will happen. Usually I do OK---but this time I was wiped out.

Please keep us posted on how things turn out with your MRI.

I took my films with me today for the doc i'll see in Michigan next week. I'll call tomorrw to have the report mailed to me. Copies will be sent to the two other Docs.

It only took 10 minutes to process the MRI films----I thought that was really fast.

I hope you continue to feel better---and good luck on your conferences---i'll be thinking good thoughts for you----- ;)

Julie :0)

Posted

Hi, Nina -- I think I was one of the silent types, thinking good thoughts from afar ... You done good, kiddo ... Nice work! Congrats on the new tooth--I know that's been a long time coming, and it must feel fantastic! Sorry to hear the MRI was so rough--I don't know that I would have continued either, and certainly not with the prospect of having to complete 50% of my grade later in the day. Phew! Anyway, so glad to hear you're up and out of the proverbial hole. I'm stuck on the elevator, I think.

best wishes,

merrill

Posted

Welcome back Nina :rolleyes:

My, my..you are MIGHTY!! I hope everything continues to improve for you! It's so good to see you posting again..I'm in awe of your strength and determination..I don't think I could have gotten through college with POTS...and here you are working too!

Posted

Nina, you're a MIGHTY GIRL. I compliment you on getting through all this. Congratulations that you made it, I'm proud of you!!! I'm having a resting week now, but after that I'll come help you getting everyone out of the hole. Summer is coming up: we need to prepare for sitting in our gardens (or at the beach?!).

Corina

Posted

Wow! you are a role model for all of us. Sometimes there's nothing else left to opt for but stubborn determination. You are hardcore though, getting through the burning sensation. That would've driven me nuts.

just out of interest, do people with EDS often have difficulty taking injections or giving blood samples? I'm about to go get tested for EDS, and my veins ALWAYS collapse whenever I have blood done. It's not that I panic, it's that my veins do!

Posted

Awe.... I'm all goosebumpy after reading all your responses!

Yeah, I can be one stubborn, bull-headed girl. I think I got through the burning and spasms because I just couldn't think of trying to do that test all over again. I will say, for the record though, that I have a much higher tolerance to pain than the average bear. I lived for 6 years with gall bladder attacks at a minimum of once a week before finally getting that bad boy taken out of me--at that point I was having the attacks daily due to the bile failing to empty and backing up into the ducts.

With school last night, I felt like I was on autopilot--my body wanted to be down, but my brain made it move anyway. I can't always do that, but I'm thankful for yesterday's little miracle of stamina. Unexpected, but nontheless a gift I'll gladly take!

I also forgot to mention that my weight is finally getting back to pre-steriod injections level--I'm only 1.5 lbs off the mark (that's 11 lbs lost since the last shot in Feb). I look more like myself and I think that's given me a little extra mental boost. Well, that, and all my cheerleaders here. And you all thought you were too sick to be on the cheering squad! Ha! :angry: I can see your pom-poms from here. :rolleyes:

Nina

Posted

Wow, that is great! Very inspirational. Feel my hand patting you on the back, that certainly is a long road with school and having pots and everything else to boot!

Congrats and ride high!!! :rolleyes:

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