WHAT! Oh wow. I'm sorry I have been so out of touch. You are just amazing. Coming to terms with all this is a process that never seems to end for me. Just when I think I have reached acceptance, something happens and I realize I still have lots to go. Wow. You're making jewelry? You rock! What is your goal this year? If you already registered I will check it out. I will try to be there...but if the surgery goes through as planned I am not sure how long I need to recover. But a group of friends wants to do the walk. That makes me feel so loved. We'll see. I just got home from going to dinner with them and I feel sick. LOL. I shouldn't have eaten that shrimp. I may go lie down.
Lily!!!!!! OMG I miss you!!! I do have a facebook too, and that is where my time has been spent, among other things =) I have been hanging in there. Recovering from a stroke in April, but thank goodness it was not too damaging! I stopped working as a result and have finally kicked my "denial" in the ass and come to terms with it. Still fundraising for my walk making jewelry with 100% of the proceeds going to the walk. How are you feeling? Will you be there in September?
RUTH!! OMG. lol. It's been so long my friend! How are you? How's the family? What's new in your life? I've been away from here for months! I almost forgot about the site, can you believe that? So much crap I had to deal with. And the Facebook addiction pulled me away as well. haha. But I found myself thinking of you and wanted to say hello. HELLO. :) Hope that you are doing better.
HI Ruth!! Sorry I have been MIA as well. On some weird emotional rollercoaster. But I am happyu to see you are back!! Yay. Hope that you are well and that you stay well. I am okay for now. lol. Trying to stay warm and fight off a cold. Stay warm. Supposed to rain all week.
Lily love! Christmas card! I had a flare again, and I guess it put me in a bit of a poo poo depressed mood...in denial I guess. So I stopped talking to alot of people and basically dropped off the face of the earth, which is the wrong thing to do I guess. I am sorry. I just had to process alot and mull over alot of my own insecurities and fears. How are you?
Hi Lily!!! I was in the hospital since Monday night :( I went in to urgent care with excrutiating right sided lower abdominal pain, nausea, fever and vomiting... the immediately transferred me to the ER. They thought I had appendicitis, which showed only slightly inflammed so they didn't take it out, they thought I had a bowel obstruction so they did a colonoscopy (very embarrassing) and then two GI studies all of which showed only mild inflammation. I had a bone-head doctor who never paged my rheumy the whole time I was there. The Gastroenterologist wanted to do a laparoscopy to check for endomtetriosis around my bowels...which the surgeon refused to do because theat wasn't "his department". So the idiot sent me home, still with a fever and swollen feet, and refused to give me a taper dose of prednisone since I had been on 100 mgs of solumedrol since Monday night... oh and he sent me home in pain.
The nurse said that she refused to send me home without a taper dose, because she said she has seen what happens when someone goes through an adrenal crisis. SO she was so nice enough to give me a taper dose "under the table" which is the usual dose that she gives her lupus/transplant patients at discharge...The idiot has done that to me before, and I got very sick because of it. Needless to say I will be reporting him to the medical board. How are you doing? You sound like you had a relaxing week ;o) Good for you!!!! You totally deserve it! Kids are doing ok. I scared them I think :-S I am just happy to be home! I miss you!
Hi Ruth!! How are you? Haven't heard from you in a while. I hope that you are okay and staying healthy. How is your family? I am okay. Been super busy lately. Next week I finally get to rest. No appointments, no clinics, no commitments, just one whole week with nothing to do. YAY! I plan on reading my books I got at the library and the new Dan Brown novel. That relaxes me. Hope that I hear from you soon. Take care!
I am glad to hear you are at home :) I was worried about you! How have you been feeling? The chest/lung thing is getting better :) I am kind of anti-vaccinations for myself so I don't plan on getting the flu shot. From what I hear and have read, the swine flu and flu in general keep evolving. I don't want to add more strain on my immune system. lol I am so not the person to ask about vaccines :oP I am too biased. How are you feeling?
Hi Ruth! So sorry I haven't been able to communicate in a while. As you know, I was in the hospital. Then my internet was out for a week. :| Frustration abounded. But it has been fixed, as have I, for now anyway. How are you? Has the chest/lung thing gotten better? Hey, do you get the flu shot?
How are you doing today? :oD Any plans for the weekend? My sisters and I are thinking of going to get the crap scared out of us at the movies and see "jennifer's body". Hmm, I might be sleeping with the lights on tonight :D
It went okay...still no answers though. It is starting to wear on me you know! I really cannot stand my medical group. My doctors are good, but their staff is terrible! My rheumy wanted to see me ASAP by Monday because of my abnormal chest x-ray and apparently my ANA was crazy high and some lupus coagulant blood stuff was also not good, left 4 messages including my internist...no call from their staff...mean while, my lungs litrally feel like I am drowning when I am lying down! Can't sleep because I end up waking up drenched in sweat, gaging coughing, because. all the meanwhile I feel like I have a ton of bricks sitting on my chest..oh and fever.
Oh well, gotta push thru another day :) I am super excited because my 2 older kids will be there tomorrow! And my son Seth said something very sweet to me today...he said that he will not mind or complain when he walks the 3 miles because he is doing it for me and everyone else who has this "mean" disease. That touched me and made me feel better. I am so excited to meet you! I don't feel alone with my fellow lupie Sisters :) Life has handed us some really bad lemons, but ya know what I will make the best damned lemonade I can out of them...I will be damned if this stupid disease tries to rob one mor ounce of my happiness in life :)
Better attempt to get some shut eye...I have a long drive tomorrow, my mom said she will help me drive if I don't get much sleep. Darn cough...I feel like kicking lupus' butt right now.
You too don't push yourself...we only have so many spoons :) hugs!!!
Well I strive to be a super fundraiser like you :) I pray thet your kidneys respond to the meds again. Yeh, the pneumonia started after what I swear was the swine flu :oP My urgent care doc didn't take me seriously and put me on 1 week of Z pak...3 weeks later still spiking fevers, vomiting episodes, major soak thru the sheets kind of night sweats and my butterfly rash is back. So whatever it is is making me flare :) I have to go back tomorrow to my internist because aside from the pneumonia my chest x-ray came back abnormal...I hope they don't hospitalize me...I will miss the walk! I hate being in the hospital too.
I miss my family too much when I am in there. i was on bed rest with my last son almost 3 years ago and was hospitalized for 3 weeks! They found that I was getting too stressed making the pre-term labor worse, so they sent me home on the condition that I had a home nurse and someone to make sure I stayed in bed...I was going nuts!!!! My cell phone number id 951-907-4872 :) Call me and I will come meet you!
I think it IS due to the fact that Lupus is not something you hear about every day, well, to them anyway! They don't know what it is because there is so little in the way of awareness. That's why as patients I believe it is up to us to spread the word. Raising money was hard. My first year I only got 90 dollars! But last year and this year I sent out personalized letters and my mom took a letter to work and passed it around. SO many people work there and just by giving a dollar, it all adds up. I keep telling people even just ONE dollar makes a lot of difference. I know it's hard economically for a lot of people right now, myself included, but I really believe in this Foundation and the cause. We are the ones who will benefit from it in the long run. I also ask people that even if they can't donate, to please pass the message along to help spread the word about Lupus. : )
Yes, my kidneys have been giving me trouble for years. When they first detected the Nephritis, they wanted to attack it aggressively with chemo. I was scared. I was only 22 and I thought it would leave me unable to have children. While this is still a big ol' question mark for me, I'm glad I did it because it helped my kidneys. But this year something happened. The Lupus flared and my kidneys were not responding to the maintenance meds I was on. So I went back on chemo. I'm worried because it seems like I did the chemo but nothing has changed. I hope I start to see a change soon, otherwise...I don't know what the next step will be but I've heard that it's dialysis from other patients. I dunno. I have to wait til October to see my Rheumie.
Pneumonia! ADM! (that's OMG in spanish.lol) Three weeks!! While I'm glad that you're still at home, isn't that something you should be in the hospital for? I'm sure they have you on some strong antibiotics. And you were feeling better? What changed? Just a flare? or did something else make you relapse? Why did you get pneumonia? Did it start as a cold/flu? I really hope you start feeling better. I hate to be hospitalized. I hope you don't need to be hospitalized. : (
oh, and That's a great idea. I'll send you my cell number in a private message.
Ouch you poor thing :o( Did the doctor say anything as to why your feet are so swollen? Are your kidneys misbehaving? I had been battling pneumonia for 3 weeks now...was feeling better but have seemed to relapse again. I have a fever again, and the rash is starting to sprout again...although, I consider myself lucky that my rash has not gotten how you get yours...I really feel for you.
How did you get so many people involved in the fudraising? Amazing how much you have raised! I have raised 100 bucks ;op...awful. People in my neck of the woods doom seem to want to donate. But yet, when it comes to their walks I always pitch in! My kids school raised over 800.00 for my team in the March for Babies preemie walk...I suppose it's because so many people know what prematurity is as opposed to lupus. I should give you my cell phone number so that we can get in touch at the walk...maybe I will tag along with you guys :oP
I am trying to get ready for the Walk. This time last year I was on my treadmill everyday in preparation for it, but with so many things going wrong with my feet, I decided to wheel the walk this year, as in wheelchair. lol. Both of my feet and legs are swollen. It's difficult to walk. Add to that the nasty cut I gave myself when I jammed my swollen foot into the VERY sharp corner of a cabinet. It's now infected and it hurts a lot. : | I just can't walk it this year. That is disappointing because it is a very big deal to me to be able to walk on my own strength that Walk every year. However this year I'll wheel myself, no one's allowed to help push me, except when I get stuck or something. *sigh* But I look forward to meeting you as well! My mom is also joining me but my boyfriend might not go. He has a family function that day. :( But my support group has signed up. It's their first year walking! I'm so happy that more people are becoming aware of it and trying to help our cause. I'm still trying to decide what to wear. Two groups want me to wear their shirts. : | Oh boy. lol.
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