Will send good vibes & keep you my prayers..

Cheryl

hi, happy to hear from you. I'm sorry you are having a rough time. you know I will always pray for you! I'm sending happy vibes your way and praying for no iv or hospital stays this time. but please keep us updated on your progress. if I had the power to zap that nasty infection away, I would in a heartbeat !

I've been sending out happy Godiva chocolate vibes, but I think I'm wearing it out sooooo. here comes a good old fashion texas bar b que vibe. smoked brisket, beans, cold slaw, sweet tea, and anything else you can add, a kick up your hills western band and a dance floor with lights strung all across the ceiling. and here comes the Cotten eyed joe song. so dance your way around the room.

hang in there
blessings
deb

Mmmm Godiva chocolate vibes, how decadent..and a Texas bbq vibe WOW...That must get you feeling well & out of the hospital....

Good luck with school..

Hey Glider!

Tons of happy vibes your way!
You are so right...compared to last year, you have been doing so amazing health wise...it's been a huge turn around, and I sure do like seeing a healthier you!

You are one kickin' woman...that determination of yours is to be admired. I have high hopes that this infection will clear so you do not get dropped from your program.

Just wondering, does your academic adviser know about your CVID? I'm wondering if they might waive the absence rule in favor of you doing the work on your syllabus, and then doing some Independent Study (go in with your own syllabus so to speak) to make up for any missed classes due to CVID...

You are a charmer...if anyone can convince someone that your own Independent Study would be more challenging than the Professors class, it would be you

Best, LuLu

I'm sorry you are having such a difficult time. This is the time of year when i normally end up with pneumonia. I am really hoping the ivig will keep me from any infections this fall. My allergies play a big part of it. When i have to get IV antibiotics I am so glad I can get all of my ivs at home. I am alot happier staying at home than being in the hospital. The last time when i was in the hospital I was admitted with one infection and within days I had five infections. I don't want any super bugs. I hope everything gets better soon.

Gliderlove,
I'm so sorry you're having a rough time! I'm praying that it will clear up without having to have the IV antibiotics. I agree with LuLu about checking with your adviser. Also, if you have a strong GPA and are still able to do the academic work, you might not could get booted out of the program because you are covered by the Americans with Disabilities Act (ADA). Legally, they have to work with you since you have a disability. I found a website that has legal staff available to answer questions for people with rare diseases free of charge and PI is listed as a covered condition. They could probably tell you more about your rights to stay in the program under the ADA. The name of the organization is ACCESS and their number is 1-888-700-7010. You are such a strong woman and you'll be such an awesome healthcare provider! Best of luck! :)
-Ashlee

Thank you all!! I already went through the disabilities office because I had an extended ICU stay in Spring that threatened the program. Unfortunately colleges do not have the same obligations under those laws as grade school does and though they are required to give you equal access to applying for benefits, they are not required to grant these things. I did have extended absence allowance when I was taking my pre requisite courses and sent in assignments from the hospital, but in these types of programs you are required to have a specific number of contact hours to legally be considered eligible for graduation and board exams. So absences are not an allowed benefit. Actually benefits are typically not offered at all as this career field requires a lot and your academic career has to reflect those capabilities. I had even offered to Skype into any lectures I would be out for, but there is no way to compensate for rotation times. I know that was probably TMI, but in case it's useful info for anyone else I figured I would explain what I knew:) I did call my immunologist to discuss the possible need for increasing my frequency of infusions. Now that we found a good brand and treatment is going well, we need to get the infection issue on track. So I am waiting to hear his thoughts on what we can do for that. Otherwise I am holding hope that my trip to National Jewish Hospital will give us some better headway. I also start a new treatment tonight for my lungs...so fingers crossed I can steer clear of this hospital this time.

Hey Glider,

Not too much information at all! I always admire how much you do despite CVID...it's like you are always beating the damn thing away with a baseball bat!

I am glad to hear you found a good brand and are even willing to infuse more frequently to minimize infection.
Please keep us posted on your new lung treatment and any news about going to the national Jewish Hospital...

Lots of happy thoughts, and I'll tag along behind you with a baseball bat to take a good swing or too at your CVID for getting in your way one time too many :)

Best. LuLu

Totally not fair... I was the first one to send you Positive thoughts and Prayers and It was eaten by I don't know cyber space? LOL Ok well to catch you up I wanted you to know Im totally sending positive vibes. Your sorta my role model on here. I don't know how you do all you do. Some days its enough for me to exist and know im here if the kids try to do them self's in doing something stupid LOL Good luck with your lung treatments. When you find what works there its such a blessing. The drs putting me on 3 inhalers that worked well together was what I needed. Now im down to 2 sometimes one. Hang in there! If any one can beat feeling ill and pushing forward its you.. In the mean time prayers and good vibes coming your way :)

Thank you guys! You always have such sweet replies!! I put a call into the doc today.....keep spiking fevers and have some nasty stuff coming out of my lungs. I am not having trouble breathing so things could definitely be worse but still hoping it can be kicked from home!! I am officially scheduled for a two week stay at National Jewish Hospital in December so am optimistic about that. I changed my avatar so you could see my new treatment! I am having trouble adjusting to it because it is not natural and is uncomfortable but it is working very well. It delivers all my medication, ventilates my lungs, and does internal percussion s I can clear mucus. I think good things are happening so just trying to hang in there so all this stuff can work it's magic!!

Hey Glider!

You look awesome with your new breathing companion! Just don't let this new companion make of that other more attractive companion in your last avatar feel jealous :)

You have such determination...if anyone can make school, a social life, getting to CO on your own terms work, it's YOU!

We're all rooting for you from the bleachers, girl!
LuLu

glider, awesome news for the December admission in Colorado! I could not be happier for you . I do admire your strength and the openess of sharing your newest buddy with us. he does look
magical.

I'm happy to hear that there is some progress with your breathing!! hopefully the antibiotic and meds are doing there thing and you are going to avoid iv treatment.

as always you are in my thoughts and prayers
hugs
deb

Hi glider. I am usually at the Fibro forum but came over here to visit.

Have you ever tried the herb Osha for your lungs. My were feeling furry and I used the tincture for a few days and felt much better.

Just wanted to mention it.