Hello!
We are going to be in Chicago on Monday the 21st of this month until Wednesday for 5 months follow up with Dr. Burt. A month ago new symptoms started to come out, feels like a relapse, but who knows! So, got a call from Dr. Burt and he asked me to come in. So here I come! While we are there would love to meet anyone and everyone who is there in Chicago. Please, see the video and leave a comment if you are available or would like us to come by.
Also some additional links that we speak of in the video:
http://www.facebook.com/facesofmultiplesclerosis/ (this is for all auto-immune decease not just MS
http://www.facebook.com/events/1707002529517763/
Tag Archives: video
Let’s talk about sex, the struggle is real :)
Hello Ladies!
This post is for the ladies, and gentleman those of you that might be effected as well by multiple sclerosis.
As many of us know the struggle is real and has effected our sex lives. Does it get better, do you get the feeling back?
For me it did, oh it is so nice to have the feeling again 😀 I hope it is the case for many.
Menopause is a nasty bitch and got to ride that wave.
Here is a short video for you all, sex post HSCT and I would love to hear your story. Please, leave a comment!
3 months birthday!
Hi, everyone.
So here it is +3 months birthday today. 3 months since I got my stem cells back and they started reboot – Lana 2.0.
Time flies by faster now. I caved in and went to work for new company, and its been 2 weeks now, and so far , while being tired – I manage it quite well and everyone is happy.
We shot short new video to talk a bit more about how I feel, what current conditions are , what I got back so far (of what I lost with MS).
End of 2015, beginning of 2015
I have been short on updates lately, sorry.
So we decided to record this video to talk about end of the year results, current and not so current events.
Fired, new job, legs and general life. All is there. And of course
HAPPY NEW YEAR!
Post HSCT Day +29
Hi All,
So, post HSCT Day +29. Feeling…good and bad?
I see improvements once I get past the unpleasant symptoms.
Positives: walking better, peripheral vision in the right eye is coming back. I would say that is remarkable: beating MS.
Unpleasant symptoms: dizziness, shortness of breath, chest pressure, GI problems, nausea, lethargic.
I would say the positives out way the unpleasant symptoms.
More of everything in the video.
Love Always and forever grateful to Dr. Richard Burt and the whole team of Northwestern,
Lana
Post HSCT Day +12
Hi all!
It is post HSCT Day +12, no more fever or excruciating pain (but still not pain-free, unfortunately).
I do have other unpleasant symptoms. Constant nausea, I do have two different medications that I am rotating but it does not seem to help. I also have diarrhea for over 24 hours, any veterans experienced diarrhea post HSCT?
I get winded very quickly, 10 minutes kind of quickly. Went to the store with my mom, 10 minutes later I was holding up one of the counters, you know just in case it was going to fall 😉
I know this will take time and I am not running any marathons right now, so I will take it easy now.
Love Always, Lana
Day +10: hard reality, Texas and meds and all that
So, here we are. Day +10. Third day of engraphment, third day of pain. Temperature jumping up/down like a rabbit, but it doesn’t look like i am sick, looks like body still going through the growing process, even though its been 72 hours since last neupogene shot.
We did video, sorry, its a bit less light hearted than previous ones, but thats what life is like right now.
But its all for the greater good, right?
If you already went through this phase after HSCT, specially with MS – please, I would love to hear your experiences too (and about pain relieve too) , because it is a bit scary, as I suddenly realized how vulnerable I am right now to anything that is out there.
My husband just came back with loads of antibacterial wipes, soaps and what not, laid it around the house.
Life goes one. Happy Halloween, folks. Happy Saturday.
Day +7 OMG pain!
So after the fun with helium from previous video and upon returning to room pain hit. Real pain. Bone pain. From waist down.
Can not walk. Shouting from spasms. Yelping. All that.
In between of yelps and shots of pain we tried to record this video.
Fair warning – it is a bit raw, with some cuss words tossed in, sorry. Filters off when pain hits that much.
About hour after video was recorded oral morphine was finally prescribed. Edge is slowly receding but pain is still pretty bad. There is some hope for sleep tonight.
On positive side theory is that if you hurting – your white cell count goes up. Fingers crossed.
Day +5
So as we nearing end of Day+5 – we decided to shoot new video, kind of show off how I am doing and talk a bit about what is going on on Day+5, specially after whole scare with fire in hospital and platelets dropping.
First of all – no worries, I am doing much better tonight than I did in morning, thank you for all the kind comments and wishes. Platelets still low but I got supporting IV medications and it helped a lot.
Taking shower is not to be discarded too. I also did few rounds around floor. But more is in the video.
HSCT-Dr.Burt. How to apply? How long is the process? Part 2 (mobilization, transplant and post transplant)
Our second video in series of questions about HCST with Dr. Burt at Northwestern Hospital in Chicago.
We are talking about how to continue process, how long it takes, what to look out, what second part of whole process is.