I'm tired of crying for hours at a time. I'm tired of the struggle to stand. I'm tired of not being able to stand thus having a wetting accident. I'm tired of the struggle of cleaning up and changing my pants, sometimes twice a day. I'm tired of my nocturia not improving. I'm tired of sleeping in a puddle for most of the night. I'm tired of not being able to hang out with my girlfriends; it's been months, years. I'm tired of Steve taking his frustrations out on me. I tired of fighting to walk, so much so that I also fight the fear of losing the ability. I'm tired of living in filth bc I cannot clean my house or pay someone to clean it. I'm tired of hiding many of my struggles from the world. I'm tired of fighting the fear that I will be unable to return to work 8/14. I'm tired of needing to use a scooter bc I cannot walk more than 10-50 feet depending upon my stamina. I'm tired of it not being safe for me to walk when alone. I'm tired of always needing to be positive when with others. I'm tired of needing help dressing, getting out of bed and bathing. I'rm tired of so much more, even of being tired - how much longer must I wait to get better? Even if I get back to where I was 4 years ago I would get back more of my independence. If you are a praying person, pray a prayer for me and my MS.
Jul 13, 2017
One week from today (7/20) I will have the first half of the first infusion of the new MS drug Ocrevus. The second half will be administered two weeks later. From then on it will be infused every 6 months. They premedicate with 100 mg of steroids and 50-60 mg of an antihistamine. I'm thinking of this drug as the step just before my transplant. My fundraising is, in essence, dead and in need of a resurrection. I simply cannot do it.
As I am in pretty bad shape and Steve has used up almost all of his vacation days taking me to app'ts, I need help both days. I need help loading up at 7 am at my home, then unloading at about 8 am at the hospital. If things go well, I should be ready to go about 1:30 pm. I'm going on faith that I will be able to drive myself home. I need help loading up at the hospital then unloading at home. On the chance I am unable to drive myself home, I would need someone to drive me home in my car. If you could help with part of the process, let me know. Thank you.
Jun 13, 2017
House Bill (HB 810) on stem cell therapy has passed in the Texas state legislature and become law. Patients in Texas will now have access to this "Right to Try" innovative form of therapy for those...
Jun 12, 2017
I survived the semester! It got hard at times, thanks to 2 Prednisone tapers and the help of my angels it was a good one. Papers were filed and I will retire 12/31. I've completed my 30th year...
May 24, 2017
Stem cell therapy is one step closer to becoming law in Texas, the latest state to push for passage of a patients' "Right to Try" legislation. House Bill (HB) 810 is one of three proactive stem...
Apr 18, 2017
I barely made it to Spring Break. The week before was not good, the last two weeks of the semester will be much better now that I will be rested. After the semester there are 5 weeks to my school...
Mar 11, 2017
This past week was MS Awareness week, it's why the timing of my news is so encouraging. In my last update I had shared how my "third daughter" was sharing my story with her church in Wyoming. ...
Feb 14, 2017
This upcoming Sunday my "daughter's" (she had lived with me for a time in Glassboro, we've kept in touch) church is having "Teri's Sunday" as she calls it. Joie is telling my story, reading a...
Feb 04, 2017
Fundraising has been stagnant, would appreciate some ideas going forward. Today my inbox had some encouraging stories from HelpHOPELive.org. They helped to remind me it takes time.
So far the...
Dec 22, 2016
In a few weeks, there will be an announcement about a fundraising table at Cowtown on Sat mornings. Steve and a friend of ours is working on something with my HelpHOPELive Fundraising Coordinator.
Dec 22, 2016
A friend tagged me on a video (YouTube?) about non-embryonic stem cell transplants. I posted it to my Fb timeline. It is public, so you are welcome to see it even if we are not "Facebook...
Nov 25, 2016
Here are a few of the out-of-pocket medical costs I'm facing when I go to have my transplant, things you will help with on #GivingTuesday this year (next Tuesday)
- the procedure, 2 nights at...
Nov 15, 2016
: #GivingTuesday is a worldwide movement to make a difference through charitable donations, volunteering and sharing important causes. I would be grateful if you would give to HelpHOPELive in my...
Nov 02, 2016
Living with MS means fighting discouragement, even depression, something I've been doing for a few weeks. Then God does something amazing to lift me up! My Tysabri infusion is given in a doctor's...
Oct 15, 2016
Yesterday was my 3 month neuro check. Things are somewhat stable, though not as good as they were last year. It was encouraging to have him tell me that a close family member has MS and she did...
Oct 04, 2016
I'm sorry this is long, but it will help you to see why I m excited about this therapy. Two of the 3 patients live with MS. I live with many of the symptoms they live with. I deleted links given...