I actually finally got to begin Plaquenil on Christmas Day. Had to wait for fever to go down to start and didn't get it until Christmas Eve, so was so eager to begin it. I set an alarm clock for 5:30pm every day so won't forget it. It hasn't worked yet, but should by the time I go to the Stanford Lupus Clinic (Immunology) on Jan. 13th. Looking forward to that so much, because will get to see the doctors for the DLE and the CNS lupus I'm already Dxed with. The gastroenterologist wouldn't Dx me with it because the last (at least 6 mojnths ago) biopsies he took in upper GI endoscopy) did not indicate it. Meanwhile I had an esophagram with lots of barium on Dec. 18th and reacted so badly to the barium that it started burning when I stood up from the x-ray table. That evening I got diarrhea so bad, was having seizures and passing out while on the toilet being supported by my rock, my partner Mary Lee (actually my wife, being married by California in 2008 right before Prop.8!!). Anyway, took Immodium AD to max of 4 in 24 hours every time, repeating it every day or two until about 2 days ago. Very sick. One doc from imaging center who found out, called me out of blue (I hadn't called him) and told me that it was rare (well I'm often "rare" all my life and am frankly very sick (sic) of it, folks) but possible that the substance in the barium in that esophagram "kit" was "caustic" to my GI track. My gastroenterologist simply said to keep hydrated and get it out of my system asap. I've been drinking lots of fluids but really it musst be out of my system, don't you think? It's been two weeks now. ..... Now I'm having trouble breathing after spending some effort on anything. Right now, I'm exhaling with pants, making audible exhales, but able to inhale okay. Don't know what that is, but it's been getting worse for about a month, now more frequent. Does anyone know what this is???? I do have an appointment with my pulmonologist in January. I saw him last month and told him but he just told me to stop making noise when I was breathing. Gee, wha?? I wasn't making it up. ......... Also have had to go to ER (I have to pay $50. copay for ER visits now, but ambulance is FREE! Go figure... to ER three times in two weeks. Last time got an RN who, as she was draping the tubing over the IV stand, said, "You just keep coming in here with the most unbelievable illnesses, it's just more than I can believe. So exceptional, just too exceptional to believe. Sorry". I told her "I have never like being exceptional my whole life myself. I truly do not like it either!!" You see, I was abused from infancey and became Dissociative, even had DID which I didn't know about until I was in my fifties and had a spiritual director who was also a licensed PhD clinical psyhologist as well as an Episcopal priest. First saw her for spiritual direction because I was in a religious order, but when I got depressed again, I saw her for same rate for therapy and she discovered my "littles". Shock for me but she supported me. Eventually had to get a professional psychologist nearby I could see for DID treatment with EMDR. ...[If you don't want to hear these details, it's okay. Just skip the rest... Actually I'm too tired to go on now anyway. I do appreciate those of you who might even understand DID and EMDR and what I'm saying here. I'm so grateful to have this media for sharing. I've been too sick to post here since I joined and I do look forward to keeping up with your posts as I have a couuple of times. But until the Plaquenit kicks in in hopefully a couple of weeks, I just keeping worse. I pray it will work soon. But I do have appointment at Stanford Lupus clinic on Jan.13th which my rheumatology team is working for. I'm on HMO but they've been great and are even waiting for me to find a neurologist who had experience in CNS Lupus to authoize me to see regularly, one who's anyone in the SF Pay Area!! They are acually so good to me, it goes against the popular opinion that insurance companies are not supporting us. Mine is. Blue Shield is its name, and I am so grateful for their support over the years. l............ Thank you for reading. I look forward to hearing from you. .. BTW is there some information somewhere here on how to post, and what is the tree of posting to various places and people?? And there are so many topics on the four lines of Life with Lupus header, that I don't know what each one encompasses.............. Now back to listen to my favorite album, Sara Bareilles' ""Blessed Unrest". I was 16 when I went to Oberlin
Conservatory of Music, class of '61 (I'm 72 but very young at heart, so don't think of me as an "old lady" please: I just don't fit the profile of that age at all.) Sara B's songs are written by her (at least the ones I've heard) and this album has some very beautiful poetry she wrote too, and her ability to express them in music is profound. Hear a new idea, picture or feeling everytime I listen, and that's Excellent Music!!... Happy New Year to all you out there, sending my love and hopes for a great year for us all.... MaryBeth
Good to see you on here. Don’t get discouraged, but sometimes it can take 6 months or longer fit the plaquenil, some even longer. I hope you di get feeling better and get some answers. Happy New Year. Mine started out with an ER visit this morning…lol
You’re in a good place for specialists. I was diagnosed almost 35 years ago at UCSF in their pediatric immunology department. Congratulations on your marriage! That is awesome. I love living in CA, granted I’m a bit biased since I was born here…lol Have you tried UCSF for a neuro? The docs there followed me for almost 20 years after my dx (originally sjogren’s syndrome, went on to develop lupus etc…). I participated in a bunch of research studies, my blood and tissue samples have been sent all over the country because I was so young at the time of dx. I was the youngest person to be dx’d in CA at the time so I totally understand the being “special” thing. High school (all girls Catholic) was difficult to say the least.
I’m sorry you had such a difficult childhood. I was working on my masters in psych before having my boys sidelined me. Lupus makes pregnancy and recovery difficult to say the least. But I do understand how difficult it was for you and can empathize even if I don’t share a similar history.
Plaquenil takes a while to work. I’ve been on it since I was 12 with brief breaks for pregnancy and breast feeding. It’s a disease modifying agent so it keeps the illness from getting worse or slows it down at least but it doesn’t reverse the disease process. The best drugs are unfortunately the more toxic drugs like cytoxan, rituxan, imuran etc… Cytoxan works best for me but my current rheumy won’t rx it since he’s afraid it will give me cancer as I’m only 43. My last rheumy understood that it is more important to me to be able to get out of bed and function with/for my kids than it is to worry about developing bladder cancer. My mom has had it so if you catch it early it’s not that bad. My mom has severe RA and is on methotrexate.
Sorry this is so long. I was trying to address the various things you had talked about. Oh, I have lung issues as well. Went through a bunch of tests and they say I have asthma. I’ve never had it in my life so I’m not sure I believe that. Have a Happy New Year!
Gentle hugs, Annemarie
Hi Annemarie! Gee it’s so good to hear from you! Thank you so very much for writing the way you did. I truly appreciate it . Is there a way to share phone#s on here? live in Rossmoor in Walnut Creek.Are you nearby? I can get to SF easily (when I’m feeling up to it. Like right now I’m dizzy and balance, but I didn’t get much sleep last night,so that is mostly responsible. No appts. today so went out on the patio with my sweet seizure service dog (will see if I can post pictures of him “George” - I didn’t name him that but since he was 13 months when we got him to e my service dog, from the woman who used to breed Great Danes which I helped her with when I was with my 1st partner who i had met as teens and always kept in touch with couple times a year & she was already a novice in lay order (Franciscan Episcopal order) that I was just joining, she flew from her ranchette in No. Texas to visit me in SF where was taking care of a young friend who was paraplegic and I had been trained by State to do her nighttime catheters. She was in hospital at the time, so good time for me to have visitor. Whew, takes me so much time, words, and energy to fully explain anything, I need to somehow. learn how to write and speak Briefly, according to my daughter!! “TMI” she says. So sorry, and open to suggestions about this problem!!
Your childhood illness must have been so difficult for such a young child. It is a burden to live always with the labels and being treated as different when you long to just fit in with the nice kids you know (some become treasured lifelong friends though.
I am once again so weak and tired and must go. Is there a way to give you my phone number? Is that allowed here?? I am a nice person Even have a Secular Franciscan Spiritual Director who supervises and trains SD’s at San Damiano Retreat Center in Danville!. She would vouch for me if necessary! Seriously, I would like to share some of our stories someday. How old are your children? My only child, a very musicaly talented and clever young woman is, umm she is almost 50 — don’t tell, okay!! She and my partner are my rocks. Also have good family now and good friends in and out of Rossmoor, and almost complete set of medical resources now. Wasn’t easy getting good doctors. Still need neuro with experience in CNS Lupus, and Stanford will hep with that.
Had choice of Stanford or UCSF for Lupus Clinic. My rheumy trained at Stanford, so decided on there. Did go to UCSF for epilepsy and non-epilepsy seizures. Was there in seizure observation unit this past July 1-6. Called the most complex case the attending had ever had… aargh…
hope to hear from you again. would like to know how I can give you my phone and/or email…
later,
marybeth
PS I have had bad asthma in the past when stressed…
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z
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Hi there, I didn’t want you to think I had forgotten about you. My mom was admitted to the ER and I’ve had even less time than usual. She contracted flu A and ended up with pneumonia. Body temp and blood oxygen levels were very low. I’ll try to send you a friend request if I can figure it out…lol I can’t even figure out how to put my picture up. Annemarie
Annemarie said:
190-orindajazzphoto.jpg (39.6 KB) 191-IMG_0507.JPG (455 KB) 192-CarolandmeC2yrs.jpg (49.4 KB)Hi there, I didn't want you to think I had forgotten about you. My mom was admitted to the ER and I've had even less time than usual. She contracted flu A and ended up with pneumonia. Body temp and blood oxygen levels were very low. I'll try to send you a friend request if I can figure it out...lol I can't even figure out how to put my picture up. Annemarie
RossmoorMary said:
Annemarie said:Hi there, I didn't want you to think I had forgotten about you. My mom was admitted to the ER and I've had even less time than usual. She contracted flu A and ended up with pneumonia. Body temp and blood oxygen levels were very low. I'll try to send you a friend request if I can figure it out...lol I can't even figure out how to put my picture up. Annemarie
RossmoorMary said:
Annemarie said:Hi there, I didn't want you to think I had forgotten about you. My mom was admitted to the ER and I've had even less time than usual. She contracted flu A and ended up with pneumonia. Body temp and blood oxygen levels were very low. I'll try to send you a friend request if I can figure it out...lol I can't even figure out how to put my picture up. Annemarie
First photo is of me now. Second is of Daughter playing flute in Jazz performance recently. Third is of my daughter, me, my grand niece turned 18, and my partner in our patio. That's my service dog George whom I'm holding.
187-IMG_0507.JPG (455 KB) 188-Carolplayingflute.jpg (26.7 KB) 189-BonVoyageAug2010001.jpg (64.2 KB)
Annemarie said:Hi there, I didn't want you to think I had forgotten about you. My mom was admitted to the ER and I've had even less time than usual. She contracted flu A and ended up with pneumonia. Body temp and blood oxygen levels were very low. I'll try to send you a friend request if I can figure it out...lol I can't even figure out how to put my picture up. Annemarie
RossmoorMary said:
First photo is of me now. Second is of Daughter playing flute in Jazz performance recently. Third is of my daughter, me, my grand niece turned 18, and my partner in our patio. That's my service dog George whom I'm holding.
Annemarie said:Hi there, I didn't want you to think I had forgotten about you. My mom was admitted to the ER and I've had even less time than usual. She contracted flu A and ended up with pneumonia. Body temp and blood oxygen levels were very low. I'll try to send you a friend request if I can figure it out...lol I can't even figure out how to put my picture up. Annemarie