Sometimes I Come Back

[Anni M]

(((((Anni))))
Good to hear from you! I just love how upbeat and positive you are, what with all you've been going through. Thoughts and prayers and good vibes are always here for you. I'm looking forward to whatever you may leave in the joke thread, too...great stuff in your posts!!

Hey there, Debbie! Yes, The SKMB HAS always felt like my second home, too!
One needs to stay positive...the alternative is frightening! The emotional side is a nasty thing when bruised up...
I hope that you liked Unkee's lame jokes! LOL
be well!
xxooa

 

[Anni M]

Exactly, what she said. I thought that was you I saw out there! I'm not sure if Id switched to Maddie since last I saw you ( also AmandaRose) but wanted to say its so lovely to see you and send you my Warmest wishes and prayer that everything will get better for you in every way that you need. Allways a laugh and a giggle I so fondly remember about you the most, and this girl, who not only do you make me think of her, but she, always makes me think of you. (((((Anni)))))

Thank you Maddie (Amanda Rose? Is that YOU??? WOWZERS!) ...it has been WAAYYY too long since I came to visit and I really feel awful about this. Can't even keep the user names straight...HEH Thank you for the reply, it is always nice to hear from a fellow long-term traveller!
I hope that you have been well, too, dear .
Hugs and take care!

xxooa

 

[Anni M]

(((Anni)))

((((((((((do1you9love?))))))))))))) right back atcha!
xxooa

 

[Anni M]

I do remember you when you were a mod here - so good to hear that you are fighting off lupus and winning! Way to go - keep it up

Pace yourself here and take it easy - don't overdo it at first.

((((Anni M )))))

Saying a prayer for you that things continue to improve

Hi Neesy!
If and WHEN things get better, I'll be taking the front page of our daily newspaper, announcing this and get it on Trending somehow! LOL
I hope that you are doing well, my friend. Very good to see you again!
(ノ・∀・)ノ
xxooa

 

[Anni M]

Nice to see you again .....you lil canuckie.

Oh Star-O, Star-O, Staro!
This lil canuckie is most happy to 'See' you again, too! I hope that things have been good in your neck 'o the woods
All my best!
xxooa

 

[staropeace]

Oh Star-O, Star-O, Staro!
This lil canuckie is most happy to 'See' you again, too! I hope that things have been good in your neck 'o the woods
All my best!
xxooa

It is fine. I sorta wish for some snow though. Alberta weather seems to be changing to a mild climate.

 

[Moderator]

Some may not remember me and some remember me all too well!
I've been a pretty much of a slacker and a bad BAD mod when it comes to checking in with my first and favourite message board (member since autumn 2005! where DOES the time go? LOL) First of all, I want to wave a hello there to my friends n folken on here （●´∀｀）ノ♡ (hellloooooo!!!) and to clear up a thing or 3.
A) I have received an occasional mail from old members who know how it's going with me. Where this info comes from is a mystery. Peeps on Facebook? On here? Dunno...
B) So I have come to clear up my health status.
C) I ain't daid yet!
So here it is , straight from the MIA Mod's Mouth. The SK seasoned members know well that I have full blown Lupus. I was diagnosed in 2013, but rightfully suspect that I have had it longer. In the last two years it has run rampant through this old chick, which involved 5 ...no 6 hospital stays. This year's fun n games involved a stroke event (but thankfully not a stroke, according to the doc at the Stroke Clinic this past week, so I dodged a big one there!) and also had major surgery on my wrist, because this disease just wants to get into my bod and have it's nasty way with me. If it hits any large organs, I'll be ROONT! Anyway, all infections have been dealt with and the follow-ups have been fine. I need to add that the meds take as much out of me as possible, so it is like a Catch 22 situation.
Back in May, the BIG DOCS at the Toronto Lupus Clinic placed me on daily inter-muscular shots of prednisone, as my body was not absorbing the oral meds. The amount is being tapered to nada so that they can replace it with a monthly infusion named Benlysta which has been very successful with people who have this disease. I was on this before and did quite well, but due to other complications, had to stop. As of next week, I will be ready to try again! YAYYY! I did not intend to write an entire story regarding my health, just needed to set straight any leaked info.
ANNND, I really do miss the MB Tet so it was imperative that I pop in to say hey and ask about YOU! Are you well? Staying that way? If so, good! If not, The Great Spirit has much to give.
Sighhh, I need to sign off soon, but if I can find the joke thread, I may have a few from Unkee B to share. Always leave 'em laughing. And to those who connect with me elsewhere, bless you for caring. It means a lot. ('∀'●)♡
Much luv n hugs
xxooa

Thank you for checking in with us, Anni. So sorry to hear of your recent battles with the Lupus monster but will be sending healing vibes and prayers that the new Benlysta regimen works. Much love being sent your way! (((Anni)))

 

[doowopgirl]

Welcome back! I love your positive attitude.

 

[Anni M]

Thank you for checking in with us, Anni. So sorry to hear of your recent battles with the Lupus monster but will be sending healing vibes and prayers that the new Benlysta regimen works. Much love being sent your way! (((Anni)))

Well, Marsha, the infusions have been so far apart re: the loading doses that I may need to begin all over again! That being said, I hope that the infusions kick in like before, as my "Dark" Passenger" has gotten into me deeper this time.
After the 1st round went south due to other complications, I went on a new "Crash Test Dummies" drug , not yet FDA approved, to check it out (vy nawt?). After the 4th dose, Brenda, my daily home care nurse and the nurse who came to administer Stelara both agreed that there should have been some change of sorts by then, so we put paid to that. I'll just do anything to get off predisone!
(((((((((((Marsha)))))))))) back to you. As always, your prayers and good vibes are really appreciated. . I hope that you are doing well !!
xxooa

 

[Anni M]

Welcome back! I love your positive attitude.

Hi, how have you been? And thank you. I cannot be so positive all the time, but i keep trying!
best xxooa

 

[Anni M]

I am going to CnP a couple of medical blogs, the first on Stelara, the second on Benlysta. Just some quick words to give you an idea on this stuff...
STELARA: (doesn't sound too good) --- EDUCATION GUIDE STELARA (stel ar’ a) (ustekinumab) injection, for subcutaneous or intravenous use What is the most important information I should know about STELARA? STELARA is a medicine that affects your immune system. STELARA can increase your risk of having serious side effects, including: Serious infections: STELARA may lower the ability of your immune system to fight infections and may increase your risk of infections. Some people have serious infections while taking STELARA, including tuberculosis (TB), and infections caused by bacteria, fungi, or viruses. Some people have to be hospitalized for treatment of their infection.  Your doctor should check you for TB before starting STELARA.  If your doctor feels that you are at risk for TB, you may be treated with medicine for TB before you begin treatment with STELARA and during treatment with STELARA.  Your doctor should watch you closely for signs and symptoms of TB during treatment with STELARA. You should not start taking STELARA if you have any kind of infection unless your doctor says it is okay. Before starting STELARA, tell your doctor if you:  think you have an infection or have symptoms of an infection such as: o fever, sweat, or chills o warm, red, or painful skin or sores on your body o muscle aches o diarrhea or stomach pain o cough o shortness of breath o blood in phlegm o weight loss o burning when you urinate or urinate more often than normal o feel very tired  are being treated for an infection.  get a lot of infections or have infections that keep coming back.  have TB, or have been in close contact with someone with TB. After starting STELARA, call your doctor right away if you have any symptoms of an infection (see above). STELARA can make you more likely to get infections or make an infection that you have worse. People who have a genetic problem where the body does not make any of the proteins interleukin 12 (IL 12) and interleukin 23 (IL-23) are at a higher risk for certain serious infections. These infections can spread throughout the body and cause death. People who take STELARA may also be more likely to get these infections. Cancers STELARA may decrease the activity of your immune system and increase your risk for certain types of cancers. Tell your doctor if you have ever had any type of cancer. Some people who are receiving STELARA and have risk factors for skin cancer have developed certain types of skin cancers. During your treatment with STELARA, tell your doctor if you develop any new skin growths." YADAYAYA, POINT IS MADE!

WHAT IS BENLYSTA?: Q & A with Dr. Daniel J. Wallace, MD, of the David Geffen School of Medicine at UCLA, and founder of Lupus LA
Q: What is Benlysta?
A: Benlysta (belimumab) is a new drug that was developed specifically to treat systemic lupus. It works by calming down the hyperactive immune system of lupus by inhibiting a protein called “B lymphocyte stimulator (BLyS)” believed to increase inflammatory reactions that attack and damage the body’s own healthy tissues.
Q: I have lupus. Will Benlysta work for me?
A: Studies show that Benlysta can lessen signs and symptoms of moderate to severe disease in many people with active lupus, and also lessen the need for as many (or as much) other lupus drugs such as prednisone. But Benlysta is not for everybody with lupus. Ask your doctor whether you might benefit from it based on the FDA’s ruling.
Q: Is Benlysta safe? Does it cause side effects like the other medicines I take for lupus?
A: The FDA found that there were likely side effects with Benlysta, but that they were acceptable enough given the apparent benefits of the drug.
Hundreds of people with lupus involved in the clinical trials had reactions whether they were given Benlysta or a “dummy drug” (placebo). Side effects such as headache, muscle pain, infections, and flu—and also much more serious reactions such as suicide were slightly higher in the groups taking Benlysta—but in the end this may have been due to chance, because roughly the same number of people taking Benlysta as those taking a placebo had these problems.
Overall, BENLYSTA has a pretty good safety profile.
Q: How do you take Benlysta? Is it a pill?
A: Benlysta is a one-hour IV (intravenous infusion) every four weeks, so you’d get it at a doctor’s office or lupus clinic.
Q: How can I get Benlysta in the U.S.? Can I get it right away?
A: Ask your doctor about getting a prescription for it, and/or consider participating in a follow-up trial of the drug.
Q: How can I get Benlysta in Europe and elsewhere?
A: A decision on approval of the drug is expected from authorities in Europe in the second half of 2011. The drug producers also have applied for approval in Russia, Brazil, Australia, Switzerland, The Philippines, and Canada.
SOOOO, both drugs are set out to be similar, but I found that benlysta and my old bod got on better! and again, thank you all for your kind words. See you in the the joke thread!
hugs
xxooa

 

[Spideyman]

Continuing healing vibes. Prayers for the right meds.