(Official Big Grrrl Online Lupus 'Zine!) I'm so glad that you stopped by for a visit! If you read something worthwhile be sure to share my link with others!
Howl Knights Newsletter October 2010 Edition
September 11, 2010
August 31, 2010 Every morning I wake up and touch my daughter with gratitude. The only thing that I fight for is another day with my lovie daughter and my family and family of choice. I am trying to dodge paralysis of my lower limbs and am reminded daily of the gray matter lesion in my sub cortex. I am facing chemo as treatment to blast this double whammy of inflammatory states co-existing in my CNS and brain. I'm a single Mum with a ten year old daughter, who cannot go for a nice little stroll in the park or walk along the rivers edge, because my ability to ambulate and walk unassisted is practically non-existent! My health battle has finely tuned my sense of morality. I am not in a morbid state here, I'm just speaking about my concerns. This heightened sense of morality motivates me to carefully choose who or what I will or will not give my energy and attention to. I have no time for bullshit, but as life has a way of throwing bullshit pies at us, it cannot be avoided! One thing that I hold so steadfast to, is the principle that all the suffering that I have experienced can be transformed into tools to help others. The seemingly bad can be converted into a source of empowerment and inspiration for another human being. That rocks! I'm not without purpose or intent. Life is not always easy and it is not always fair yet, I do not have to be negative or even cynical about this journey. Certainly, I do have moments of being weary and even overwhelmed. I just don't give up, I don't throw in the towel. I may not have control over my body and the very cells that do have their own minds and objectives, but I can control my thinking and my attitude. I determine the course of my interior world and thought life. The seedlings of making a difference sprout right between my ears. Sometimes I have a shit load of weeds in my thinking and I have to diligently and vigorously pull them out. Much like keeping a real world garden from being over taken by weeds, I have to do the same with my very own thinking. I weed daily! Keep the Light Going!
This blog is still under construction! I am so glad that you have stopped by for a visit!I'm CNS challenged, but not dead! I'm still facing severe inflammation in my CNS (spine & brain). I am not stabilized YET! I am hoping that Cellcept will cool things off and maybe even bring remission or a CNS vacation?! My current objective is effective time management for the chronically ill. Though I fall short of that most days, I wipe my butt off,
roll my sleeves up and keep moving even if at ataxic and snails pace. Keep the Light Going!
November 20, 2010
Creative Kudos to my friend and researcher, Tyler Malcolm!
I HAD to share this lovely and uplifting sick humor email (which I received from him a few weeks ago) message with others, especially my fellow CNS patient fighters!!!! As soon as I read it I knew I had to make a sick humor image with it! Though the actual production of the image has been slow to come as a result of me struggling with memory issues the last few weeks, flaring, and feeling like shit while my body adjusts to the CellCept® . So, it is with great honor that I present to you, the first edition of Off the Wall Sick Humor Greeting Cards!
November 6, 2010
Finally Some Results!
On a follow-up visit with my UCSF neurologist on October 18th, your zebra overlapping patient bitch grrrl was informed that he is not calling me "MS", he is calling me "suspected" MS and believes that my lupus is mediating most of my CNS issues. He said that because of my extensive medical history, that he couldn't diagnose me as MS. That if I did not have MCTD and lupus that he would have immediately diagnosed me a MS. That my neuro issues are not clearly MS. That I do not present like a typical MS patient, that I have so much overlapping with my diseases.
He will monitor me with MRI's every six months and wants to see me every two months. He is still stressing physical therapy- of which I've been procrastinating on signing up for. I will utilize the arthritis approved heated pool at my local Easter Seals building to add to my PT
exercise regimen. He said that he would call my rheumatologist and make his suggestions and that my rheumatologist here in my town, can commence my therapy with CellCept®.
On October 21st, I saw my rheumatologist and he told me to stop taking my methotrexate® injections, but to stay on the Plaquenil®. He started my titrating dose at 1 gram (1000 mg) per day and said that he will target my dose at 2-3 grams daily. He also gave me a slip for a CBC blood draw two weeks into therapy and wanted to see me in one month.
The thing that totally blew my mind is that I hadn't even been home for that long and my rheumies office assistant called. I was surprised and thought that maybe I forgot something there and she said that she had good news, my insurance had authorized payment of the CellCept® (for 1 year) in less than 45 minutes! No, that is not my usual experience. I'm supposed to have headaches and lots of battles with administrative dragons to obtain my prior authorizations. It should be a pain in the ass and be weeks to months before I actually have the medicine in my hand! For the record, I had my first dose of CellCept® quite literally, 5 hours after Dr. R had written the prescription!
Well, as shit would go with me (and boy does it like to "go" with me!), the evil and insidious CNS crap started to wax last weekend. Very subtly at first, just vertigo and one big toe numb. The freakin night sweats, headaches, malaise, required afternoon naps and declining neurological function increased through this past week. I had just tapered down to 7.5 mg of prednisone® when this all happened. I've fared through the last several days, waiting and watching to see if it would decrease or increase. Well, I'd be lying if I told you that everything is hunky dory over here on my end. I'm a mess again. I have much numbness in patches throughout my body, and today I'm not walking well (with my old lady walker), can't stand well and strength is decreased. I've postponed going to my
drive-thru infusion center (AKA the E.R.). But tonight I will set my alarm clock for 4 AM and head over to get another bag of steroids. Will I get 3 or 5 infusions? hmmm.....
OH! I don't want to go! Mostly, for vanity reasons- as I currently weigh 135 Lbs. This is the biggest I've been since I was pregnant. Maybe all those homemade Boston Cream pies had something to do with the circumference of my waist???
Oh, gawd darnit, food does take on lovely flavors because of steroids, doesn't it?! Well, then some patients said that CellCept makes them nauseas and decreases their appetite. Perhaps it'll all pan out...
Oh, there's another vanity thing, it's about my hair. There's the possibility of my hair thinning and even falling out the hair thing. You know years, ago when I was a punker grrrl, I shaved me head bald. Had a mohawk for quite some time and then a shaved head with bangs. Well, my hair measures 2 feet long now. I'd be lying if I said I don't care about my hair falling out. I had already decided that I would get my hair hacked off to say about an inch long and donate my hair to Locks for Love. I figure I can help a curly headed child who is bald because of either cancer treatment or a genetic disorder while giving Lupus the middle finger!
I was talking with my Mum about my hair vanity thing, and she thought maybe it would be better to just cut my hair to an inch or two, that way if it falls out in clumps it won't freak me out as much. I'm inclined to take her suggestion. I just haven't done it yet....
CellCept, pound the crap out of those nasty auto-antibodies right smack in the ass!
Keep the Light Going,
October 21, 2010
Now, that's not supposed to happen!
Saw my rheumy this AM. He has started me on CellCept ® . My rheumy got the prior authorization for my Cellcept to go through in less than one hour today and I actually had it in my hands 4 hours later. WOW!
Now that's not supposed to happen to me, it should take weeks or months of fighting administrative dragons: unrelenting battles with moron doctors, rude doctor staff, and stupid insurance reps, filing grievances and a few hospitalizations in between... Way to go Dr Raul's office!!! Thankeeeeees BIG TIME!
October 2, 2010
October is International Lupus Awareness Month!
Males get lupus too, you know!
The ratio of male lupus patients to females is 9 to 1! That's one male per every nine females! Males make up less than 10% of the lupus population. When a male gets lupus it is usually more aggressive in them, attacking vital organs and causing impairment and damage. Yes, lupus is commonly a female disease, but I think that we need to raise our advocate voices for our fellow brothers a bit more LOUDER!
Check out the recent edition of Lupus MCTD Foundations, Howl Knights Newsletter!
Pretty snazzy stuff, if I don't say so myself!
September 13, 2010
The Lupus MCTD Foundation Announces the 2010 Flight of the Hope Bracelet Patient Participants!
Both Kathy Patterson and I would like to thank everyone who has offered to participate in this unique fundraiser! Kathy and I believe that this traveling bracelet will not only raise monies for Alliance for Lupus Research, but ultimately form and strengthen bonds between fellow patients across the U.S.
Now, I would like to introduce to you the 2010 U.S. Hope Bracelet participants!
List of 2010 Hope Bracelet Participants:
1) Sue Myrick (Massachusetts)
2) Tracy Bennett (Texas)
3) Kristel Goodspeed-Correa (Illinois)
4) Melissa Bishop Wise (Indiana)
5) Sylvia Chavez Weitzel (California)
6) Tesa Perry (Washington, DC)
7) Erica Wheaton (Ohio)
8) Faith Dean (Texas)
9) Allison Wisenbaker (Florida)
10) Pat Thompson (Alabama)
11) Maria Basulto Ortega (New Jersey)
12) Tracey L. Flenner (Ohio)
13) LuAnne Trivelli (South Carolina)
14) Cheryl Cerisano (New York)
15) Sy Robinson (New York)
16) Katie Ruddy (Ohio)
17) Suzanne Amir (Michigan)
18) Chrystal Burdette (South Carolina)
19) Patty Jones (Florida)
20) Kimberly Ann Possible (New York)
21) Liliana Lily Cat Guillen (Los Angeles)
Thank you to all of our participants we are honored to have you aboard!
Please visit Lupus MCTD Foundation to learn more about this awesome fundraiser!Tweet
2010 Flight of the Hope Bracelet™
In preparation for Lupus Awareness month (October), the Lupus MCTD Foundation is pleased to announce the launching of the 2010 Flight of the Hope Bracelet™!
In 2008, the Lupus MCTD Foundation launched the premier Flight of the Hope Bracelet™, and one person decided to keep the bracelet for herself. The 2008 bracelet lost forever; along with its companion photos and the personal letters of encouragement and hope from other patients. In sharing about our first experience, we hope that if you decide to participate that you keep your commitment to this group effort.Please accept our apologies, but this fundraiser event is going to be limited to 20 U.S. participants this year, due to time restraints. You must be on either of our friend’s lists to participate. If you are interested in participating, please PM either of us your name and mailing address. The mailing list will remain confidential.
Once this bracelet has traveled to patients homes, it will then return by October 23, 2010 to the Lupus MCTD founder, Kathy Patterson who will then post images of the bracelet on the Lupus MCTD Group page on Face Book. The Hope Bracelet will be auctioned to off to the highest bidder during the last week of October 2010 on Face Book. All proceeds will then be donated directly to Alliance for Lupus Research, where 100% of all donations go directly into research for lupus.Yours in Service, Kathy A. Patterson, Founder/Owner Lupus MCTD Foundation Kim Nault, Administrative Assistant Lupus MCTD Foundation LupusMCTD Foundation Group on Face Book