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AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/25/2008 12:43 AM (GMT -7)   
Hey Emmi!!

I wondered how you've been feeling lately.

I was thinking of you as I read a post in the Alzheimer's forum. There is someone named Goldilocks57 who is asking if anyone knows about Hashimoto's Encephalopathy and I thought of you. I did post and suggest that she start a topic here at the Lupus forum, but I don't see one so far. Thought you might respond to her at the Alzheimer Forum if you are feeling up to it. Not sure she'll find her way over here.

Thanks Emmi!!

Blessings!

emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 1/25/2008 9:48 PM (GMT -7)   
Hi Rosie,

thank you for he heads up about Goldilocks' question. I hope it's not because she has been diagnosed with it!

How are YOU doing, friend? I see that you are posting in the wee hours. I hope you're not having trouble sleeping...

xoxo emmie

PS I have noticed how you keep up with so many and remember details on all. I am sooooo impressed. It must be from drinking your own wonderful tea!
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/26/2008 6:34 AM (GMT -7)   
LOL Emmi . . . after your kind comment about my memory . . . I had to jump back over to the Alz Forum to see if it was her or her dad AKKKK it's her husband! So, I see you've already posted. THANKS! I feel for you and her for the lonliness that comes with not having someone to share with.

I actually don't have a memory for most things. There are a few things here that "kindof" stick . . . but I had to go back to your profile and make sure I remembered the right person . . . . LOL. So it helps if I have a way to go back thru posts to see if I can figure out the right person.

YES! I've been doing quite well. I do have flares of the bowel inflammation (ewww) about 5 in the last 7 months and that is wicked, but has preceded my flares. I see a gastro in March. Hopefully I don't have UC. But in general . . . I'm doing way better than that two year flare I couldn't pull out of . . . YEAH! I just have to use really good judgment in how much energy I spend in any given day or week. When I test those boundaries, I pay for it. Sleep? That is better too. I'm sleeping a nice block of 4-5 hours on many nights and when I can't go back to sleep, I just come downstairs and post a little and then try again.

How have you been doing sis????

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 1/27/2008 9:48 PM (GMT -7)   
Hi Rosie and anyone else out there!

Thanks for sharing your memory booster. Now I know that you are human....you don't have this super human memory secret that you've been keeping to yourself.

Sorry you're having the digestive problems; let us know how your gastro visit in March goes. I'm with you in hoping you don't have UC. Have you ever been diagnosed with IBS? I see inflammatory bowel in your signature, just wondering what they have found before.

I am doing ok. I'm going through one of those spells where we get tired of going to doctors, tired of having tests, tired of taking meds. You get the idea. I'm having "trouble" with my new neuro lately. Too long to go into, but I'm ready to put him in a hand basket and send him to h*ll. Can you tell I'm not happy with him?

However, good news on the family front. Our oldest daughter is having her second baby this summer. I find the grandkids to be such a joy (what grandparent doesn't?) And since I'm home, I have more time with them. Since they are young, it is always a circus but such a good one. Of course I'm the ringmaster!

Another bit of good news is that my SSDI came through. Very happy and relieved about that. I must get to bed. Another test early in the a.m. One of those you can't eat or drink after midnight. Somehow I feel it's my duty to stay up until midnight eating every second even thought we have to get up at 6:00 which is nearly impossible anyway much less after less than my usual 10-12 hours a night (and not by choice!)

You take care. It's so nice to have you back. You are a terrific moderator.

xoxo emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 1/28/2008 8:46 AM (GMT -7)   

Hi Rosie and Emmi.  It's nice to read your posts.  I just wanted you to know that I have a tee-shirt that reads:  "Where are we going and why am I in this handbasket?"  devil

Love to you Both,  Butterflake


Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: CellCept plaquenil methotrexate prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol multi vitamin C calcium/D flaxseed oil  PRN: ambien neurontin promethazine xanax
             Better living through chemistry :D    Donna
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/28/2008 10:35 PM (GMT -7)   
LOL Emmi!!!! "Its our duty to stay up till midnight and eat!!!" I LOVE IT!!!

Previous gastro dx'd inflammatory bowel disease . . . but didn't make any suggestions except to eat high fiber foods. So I never thought another thing about it when I had pain and bleeding . . . but I also didn't realize that this is related to autoimmune bowel disorders AKKKK!!! Just realized this last year . . . when things started getting worse . . . so I'm having it revisited by a new doc (the other one was creepy). I'll have a woman gastro at the Cleveland Clinic. So . . . we'll see.

Sorry you are on the "medical hamster wheel" . . . it just seems like you can't get off sometimes. I've gone way long times w/o getting medical attention because I just can't stomach the thought of getting back on that hamster wheel. . . . but when I'm stubborn like that, I really pay for it. So I don't recommend ignoring anything! OH darn the neuro . . .I've heard they can be really difficult. Sorry you are dealing with that . . .do keep us posted, its nice to get updates.

Thanks Butterflake . . . I love your T-shirt!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 1/28/2008 11:35 PM (GMT -7)   
Hi Rosie, Emmi, and Butterflake,

It's nice to catch up with you through your posts. Did you take some time off Rosie? Emmi, I'm so envious about you and your grandbabies. My son and his wife talk about getting pregnant in a year or two and I'm already starting to knit baby clothes. Babies kind of put things into perspective, don't they. Your SSDI news is wonderful! What a relief for you. What tests are you getting? My mother had frontal lobe encepalopathy. Is that in any way connected to what you have? She also had lupus. We never could figure out why she couldn't walk except for her encepalopathy. Her mind was intact until the day she died.

My memory has gotten so bad that my PCP is sending me to a neuropsychologist for a workup. I hope it's a result of all the meds I'm taking. I'm only 58, too young for senility to start setting in.

Rosie, there's nothing worse than gastro & bowel problems. I've been having fits with pain and all the yucky things that go with it and we finally determined that it was gallbladder so we're going to jerk it out on Wed and I should feel a lot better. Sometimes I wish they could just jerk out our entire gastric system and make us well. But oh well, the things we have to live with. I hope the doctor at the Cleveland Clinic helps you.

Hugs,

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/29/2008 6:47 AM (GMT -7)   
Hey Patti!! Nice to hear from you too!! No, I've been around . . . just hadn't updated about the gastro stuff . . . and I'm still PLENTY happy to be doing so well for the most part.

We are planning an all inclusive Apple Vacation!!! Yeah!! We haven' be away for about 6 years so we are really looking forward to it!! I've got all my cover ups and umbrellas etc and we will be staying on the beach but we limited outdoor stuff to sunrises and sunsets with a little snorkeling. Woooo hooooo, I'm SO excited.

LOL Patti . . . knitting baby clothes ahead of time???? You'll jinx it and have to wait forever!!! (joking) I have a sweater and legging set for a baby boy and one for a girl too . . . you never know when you'll need them!!!. Congrats on the new baby!! I'm sorry you have belly issues as well . . . the pits!!

Emmi . . . I forgot to congratulate you on your new grandbaby!!! wooo hoooo!!! Such excitement AND the disability award . . . takes a little pressure off I hope.

Its nice catching up with old friends!!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 1/29/2008 10:03 PM (GMT -7)   
Patti,

It's great to see you back! Hope you've been doing a bit better. I do hate hearing that you might be seeing a neuro. If that happens, do let us know what you find out. I think it's pretty funny (and so sweet) that you're ready to start knitting baby clothes. Do your older grandkids still come over, spend the night and such? As far as the encephalopathy goes, I don't think it is related to what I have. You can google hashimoto's encephalopathy to see what I have--way too much for me to explain here. I'm glad that she remained sharp for life. My brain function has definitely taken a turn for the worse! The test I was referring to wasn't for the HE. I'm having some esophageal stuff checked out and found out last week that I have an overgrowth in my small intestines. Both of these issues are part of scleroderma, not lupie stuff.

Rosie, your vacation sounds wonderful. The beach sounds so wonderful especially on these ridiculously cold nights! We will want a report once you return! I'm really happy for you. I know you've had a lot going on the last several years. This will really do you guys good.

xoxo emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/30/2008 2:05 PM (GMT -7)   
Thanks Emmi . . . SO excited!! I'll give a full report!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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