View Full Version : Hello to My Dearly-Missed Friends
01-12-2010, 07:40 AM
Hi to everyone -
Its been quite a few months since Ive been here - computer still broken AAGHH!! However, I did buy my kids a new laptop for Christmas and - what do you know? Here I am! Well, it was definately an incentive to get it knowing both kids are gone most of the day and, thus, the laptop is for me too!!
Rob and Saysusie - I miss you both, and Oluwa too! I hope you all (and those I do not yet know) are doing well and hanging "flare-free". As for myself, I had quite a nice little remission going on - which worked out well as my Mom got really sick with lung cancer and needed me (she is cancer free right now yeah!) God works in mysterious ways Indeed - maybe not so mysterious...
Anyway - as with everything - there is change, and I am currently in one heck of a flare (insert boo-hoo here) and this one is affecting the CNS. Saw a new neuro yesterday, and he is not sure yet if it is a complication from lupus, or a separate auto-immune issue (insert blah blah blah here). Have a TON of tests scheduled over next few weeks, and trying to remain grateful that the doc is thorough and educated in rheumatology. Anyway, its good to be back and I am hoping Ill be able to be here on a regular basis. Let me tell ya - fighting this disease is ALOT easier with all of you in my life - even if tis just cyber-ly!
Im excited to check out all the new stuff going on here too!
Grateful to be back!
It's great to see you! How's everything down Boston way? Same old stuff up here. I've been semi-OK healthwise. Was diagnosed with Trigeminal Neuralgia summer of last year, and have been taking neurontin to keep it in check. It's some incredibly painful stuff having a bout of TN, but fortunately the meds are working well.
I'm sorry to hear of your Mom's lung cancer, but very happy to hear she is now cancer free. What do you think of the new We Have Lupus? It took a little getting used to, but I love the new look and new features (the arcade is addictive).
What sort of separate auto-immune issue do they think you may have? I hope it's just Lupus. Lupus can have serious effects on the central nervous system, so it could easily be just from that. Having two autoimmune diseases is no fun. Sometimes I have a hard time figuring out which of my symptoms are from SLE, and which are MS related. It becomes confusing.
Anyway, welcome back! Don't be a stranger!
01-12-2010, 08:33 AM
I have to say - I thought of YOU when the neuro said maybe something in addition to lupus. MS was mentioned, tho the doctor talked a mile a minute and I was - as usual - a bit intimidated to say Slow Down my Brother! Im just going to try and sit tight and get the tests done and see what happens. My main doc - who I LOVE thinks its a lupus thing, so Ill just have to wait and see. It started a few weeks back with a BLINDING headache on left side of head only. I went to lie down and I felt such pressure and then POP - and I like blipped out for a second. I was thinking seizure actually, tho my face and head on that side felt a bit funny. Well, knowing the funky things that can happen w this disease, I ignored it (I know, stupid). Thein it happened again the next morning, and a few times since. Always when Im really tired and always when Im lying down. I went to my doc and she said she also thought seizures from the lupus. Had EEG done and went to neuro consult. EEG was abnormal but no sign of seizure. Neuro exam yesterday showed abnormalities including the Babinski sign? He said there is def weakness on my right side. Said with lupus, it could be all kinds of things - inflammation, vascuvlar, etc. OR a separate issue MS, etc. So I need new, sleep-deprived EEG, 2 EMGs, brain MRI, CT scan, Xray and blood work. So, as we know in the lupus world, his being thorough is a good thing, and Ill just wait and see, try not to worry, et. The problem is I am STILL having this BRUTAL headache - severe pressure and I feel like junk - HEAVY fatigue and weakness. They dont wnat me on any prednisone yet cuz they want to see whats going on first. So really trying to chill out, take care of myself etc. until I get some answers/relief!
Sorry abnout the TN!! Oh gosh, Ive heard some real horror stories about that pain. Rob, you and the people here are always in my prayers - whether Im here or not - and a special one going up for relief of your new condition. Your strength though is always such an inspiration to me, as Im sure it is for so many here. Im so happy to be back in touch...
01-12-2010, 09:46 AM
Wow...it suddenly got even brighter in here.
Lauri, you've got a positivity that glows very brightly.
Welcome back...so sorry you're back in flareville and enduring new symptoms. By pop, do you mean you blacked out?
01-12-2010, 01:50 PM
Thank you for the kind words. The answer is like Yes/Not Really - lol. It was like everything blipped off for a split second, though I wouldnt say I lost conciousness. If the "blip" lasted longer, I would say that Yes, like a black out. Very strange, I know - and that weird pressure still remains. The way I described it to the neuro yesterday was like an air bubble in the left side of my brain rising up, up and then POP. It has happenedd several times since - but not in the past ten days or so. But headache and pressure still there. And NOTHING is relieving the headache. It gets a little better, then is back. Much worse when Im up and around and better when I dont do much - total bummer. I try to stay positive by remembering when I had all types of horrible symptoms and no doctors to really help me or treat me. Ive been blessed with a great doc, who refers me to other great docs. Though I will say this neuro WAS a bit arrogant...arent they all? LOL Though Id rather see a neuro ANYDAY before seeing a rheumie. Ha HA
Thanks again for the warm welcome!
01-12-2010, 02:30 PM
Welcome back, Laurie.
I think that I remember you from a while back. Good luck with all of those tests. It's the pits the way that docs keep adding on tests and then changing diagnoses. You don't have this, you do have that, but wait - you might have this!
Hang in there, and keep in touch with us here at WHL.
01-12-2010, 06:01 PM
I had such mixed emotions reading your post. I am so very, very happy to see you again and you were so very missed. Then I was happy to read that you were doing so well and able to be there for your mother. But, sad to hear of your mother's cancer and then happy to hear that she is cancer free. But, then sad to hear that you are having problems now and having to go through all of the tests again and that your CNS is being affected.
I am glad that your doctor is being so thorough, especially given the symptoms that you are having with your headaches and the mention of MS. Yes, it is best to not over-stress yourself and to wait until the tests are completed. On the one hand, I understand you doctor not wanting to give you Prednisone right now, but on the other hand, getting some relief from your symptoms would be such a welcome prescription right now.
Please keep us advised of your tests, their results, and what you are your doctor are going to do. I am praying that these issues can be treated very soon.
Keeping You In My Prayers
Peace and Blessings
01-13-2010, 09:54 AM
Oh Lauri...how awful! That has got to be scary too! Or rather, it would scare me. So sorry the headache won't let up. Headaches suck so bad...when your head hurts there's not much you can do physically...and what you force yourself to do with a headache can be agonizing. I''m glad you have a good doctor and he sends you to other good doctors when needed. That's some powerful ammunition!
01-14-2010, 10:48 AM
Thank you all for the thoughts - As we know here its the compassion and empathy that can so often keep us on track and keep our spirits up. My Mom was VERY lucky to ahve been Dxd early with her lung cancer - it was an incidental finding on an MRA ordered by her neurologist! We are so grateful as well that we were able to be seen by the chief of thoracic surgery at Brigham and Womens Hospital here in Boston. Her surgeons are nationally known for their progress in treating lung cancer. And you would think her surgeon - having that type of reputation - would be an uppity-type, was the complete opposite! Great, down-to-earth family man who, if talking to him, you would never know he was held in such high esteem in his field. We were all SO comfortable with him and what a DIFFERENCE that made in my Moms outlook on everything. Anywy, she sailed through chemo and radiation, and recovered just fine with her initial surgery. In March she had the actual lobectomy on uppper feft lung which got rid of all cancer, but a surgery that does one doosie on the body. Two ribs were removed with the upper lung and all the lymph nodes in the area. Sadly, this surgery has left Mom REALLY debilitated, and she still suffers from extreme pain and she needs oxygen. Dont get me wrong, we are beyond grateful her prognosis is very good, but I feel so bad for her as she had to leave her FT job of 17 years and is still unable to do much. THis is a HUGE difference for her- she has always been an on the go lady - and has taken its emotional toll.
I live next door to Mom and my sister lives a couple streets over, so we have been able to take really good care of her. This is why, however, I am VERY frustrated with MY disease, as I am unable to do much for her right now. But, I know my status will CHANGE and that soon enough I will be back in the game. ASs I said before, I am SO HAPPY that my lupus took a looonng nap during the months where she needed me most. God is good.
OK - enough out of me - I really havent had a chance to look thru the posts and see how everyone else is doing so Ill stop talking and start reading!! LOL - Im really hoping my friends here are hanging in there and keeping the Insidious Beast at bay!
Thank you all again - so much,
Love and gratitude
01-14-2010, 01:39 PM
I am so sorry I have been gone for so long. I am dealing with a really bad bout of depression big time. My husband is showing all the signs of end stage cirrhosis of the liver and will not get help for it. He is lying to his doctor and put on his patient information that he does not drink. In fact he has been drinking heavily for years and years. Now his abdomen is all blown up and his blood pressure is sky high. His skin is yellow colored and he has bad smelling breath and a host of other problems. I hate to say it but I think he is on his way out. I do not know how to deal with this. Stress is one of the worst things for Lupus and I am afraid that this could put me in the ground. Any information from you all would be very greatly appreciated.
I hope that nobody is mad at me. I just do not deal well with stress and severe depression.