Author Topic: About ourselfs  (Read 9687 times)


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Re: About ourselfs
« Reply #30 on: November 21, 2010, 08:46:09 AM »
Hi all,
My name is Linda. My screen name is made up of my first and last name. I am 57 years old and have been married to my husband Jim for 38 years. Yes I too was married young. We live in WV near the Mountaineers. Let's Go Mountaineers!! I have a 37 year old son and a 35 year old daughter. I have 2 beautiful granddaughters Sydney 6 and Marissa 3. We are due to have our 3rd grandchild in January. We don't know what it is as they really don't care. It will be a pleasant and blessed surprise. My son and my daughter have each lost a set of twins which has been heart breaking for me. 2 sets and I didn't get to hold any of the four babies. I know they are in heaven with my dad and he is holding all 4 now.

My husband works for Mylan Pharmaceuticles after retiring from UPS after 31 years. What can I say he loves to work. I guess someone has to. I worked as a medical Biller for a local hospital until Sjogrens got me. I also have Fibro, Reynalds and Osteo arthritis. The RA came later and has been hard for me to deal with. I think I am in denial until I have a bad flare then I know that I am sick. The nerves are shot and I think this is the worse thing about it all. I cannot seem to get settled down.  I can no longer work due to mental distress and physical distress. I have been turned down for SSI but have filed an appeal.

I have a wonderful loving Multese dog named Bella and about 20 or so outside Koi fish. Some are about 17 years old and are about 18-24 inches long. They are dormant now that the weather has become cold.

God has been a huge part of my life since all of this has happened to me. I guess we need something in our lives to hang on to. And I know he is there helping me thru it all.

I love you all for being here to support all of us. We all share a common bond that only you can understand.
Happy Thanksgiving to you all.
Love Linda


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Re: About ourselfs
« Reply #31 on: November 21, 2010, 09:44:21 AM »
Hello NavyDad
I am going to re-post what I added on a similar discussion, but I will add some more so I don't look lazy lol. 
My real name is Joan, I was given that nickname years ago, that's an other story lol. Anyway I just turned 54 in September. I have 4 grown Sons & 10 Grandchildren with one more on the way lol. I'm in a relationship now but my Husband died of Colon Cancer 8 yrs ago he had just turned 46  one of the theories going around is that such a traumatic event could have triggered things off with my health issues. Before I went off work sick I worked for a Jewelry company and loved what I did.
I have been off work now for 3 yrs now. I was on my Works medical insurance but now I'm on Government Disability
It started off I was diagnosed with Depression, Osteoarthritis,Chronic Fatigue Syndrome Acid Reflux and Sjogren's Syndrome. and my hair is falling out because of the Sjogren's. Next I was diagnosed with Fibromyalgia Then Closed Angle Glaucoma, and Migraine Headaches. most recently I was diagnosed with the start of Cataracts on both eyes, and an Enlarged heart, Other than that though I'm just peachy lol.. I have applied for the Medical Marijuana program through Health Canada. I'm hoping to hear something soon.  I'm not really new to SW I did join back when I was just diagnosed with Sjogren's but kind of lost track of a few things, my brain being one of them lol.  I think because I have so many different things going on with my health, I tend to join support groups for all of them then get overwhelmed and not go on anything for a while. kind of stupid eh? lol. I am a social network junkie :)  I am just looking out of my window while I'm typing and it is starting to snow again Grrr don't get me wrong I love to look at it and its beautiful just as long as I don't need to drive in it. which is not usually the case..   Right now I am so dehydrated because my Sjogren's is really flaring up. I have a headache from it. the bad thing is I hate water as well and don't get anywhere near the liquids in me. so that doesn't help with Sjogren's one bit. I have had so many people say to me how can you hate the taste of water it doesn't taste of anything, my answer is Yes it does it tastes of water and I don't like it lol.. I really do try to drink it and I add crystal lite to it and other things. my 2 fav liquids which are the worst for me are Coffee and Coca Cola both caffeine both dehydrate me lol I just can't win but oh well.  I have given a link to this community to many people in my other groups over the last few years. it truly is a great community and I will try not to abandon it again hahaha. Hugs.


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Re: About ourselfs
« Reply #32 on: November 21, 2010, 02:56:44 PM »
Hi, I'm Kelly.

Liz- I am also a conspiracy theory person and I think that my chronic sickness has made me paranoid and crazy.  :D  I mean that in a good way because I have creative craziness, the kind of compulsive imaginative artistic eccentricity that drives me.  On the Meyers Briggs personality test, I am a INFP-- introvert, intuitive, feeler, perceiver (which means that I wear my heart on my sleeve, but am a people-person).

I'm a Southern gal from Savannah, GA , but now live in Richmond, VA-- which is as close to the "true" South as I can get.  I love stories, which is probably why I ended up as an English teacher.  My original dream was to become a journalist and I would spend hours as a child walking circles around my house making up stories in my head.  I did get a BA in English/Communications and later a Master's in English/Education.  I was in Banking/ Human Resources for 8 years.  I've been teaching for over 15 years, mostly high school.  The last six years has been college-- although I just received a job offer to go back to teaching high school dual-enrollment (college) courses. I have to decide if I can brave the stress of it all.  I also do some freelance writing for magazines, on-line sites.  I have two novels written-- just waiting for an agent who loves my work unconditionally. ;)

I spent ten years of my life volunteering for an organization called Operation Smile.  It was the single-most thing that changed my life.  I spent two to four weeks a year doing medical missions in South America, and the rest of the time,organizing huge charity galas and running student conferences.  It burned me out, though, as I tend to take on too much. "Just say no"-- my husband tells me. I now do some work for another charity, Children Incorporated. I always have something on the back burner.

I've been sick all my life.  It got worse with the birth of my sons-- two boys now ages 14 and 11. My husband Mark and I have been married 16 years.  He's put up with a lot with this illness-- although now that I have been diagnosed, he understands more. I couldn't explain to him how sick I felt-- all the time.  But even if I died tomorrow, I can say that I've lived a good life.
« Last Edit: November 21, 2010, 02:59:03 PM by kwolfsheimer »


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Re: About ourselfs
« Reply #33 on: November 21, 2010, 05:45:21 PM »
What a great thread!  Thanks for starting it NavyDad!  My real name is Rhonda and I am 51 years old.  My husband and I have been married 12 years and I have two children from my first marriage. However, my children think of my husband as their dad. My son and his wife bless us with a beautiful grandson in December of 2008.  Anyway, I have always suffered from allergies, sun sensitivities, dry eyes, and fatigue.  When my grandson was born, I flew to visit my kids and meet my grandson.  The 2 weeks I was there, I was miserable.  I couldn't figure out why I was so tired all the time. 

When I returned home, I saw my doctor and told her how my hands were hurting and I was so tired and stiff all the time.  She ordered the bloodwork and voila- my nightmare began.  In April 2009, I saw my rheumy for the first time and he said it was Sjogrens and fibromyalgia.  He ordered Plaquenil and sent me to an Opthalmologist for a baseline exam and I was told I had Macular Degeneration.  So off to a Retina Specialist who confirmed this. 

I have been to several "ologists" - and all of them have found something - Cardiologist- Aortic Insufficiency; Pulmonologist- Asthma; Neurologist- Small Fiber Neuropathy; Opthalmologist- Macular Degeneration and Cataracts; Dermatologist- rashes; Gastroenterologist- Polyps and Gastro isssues.  It's always something - hypertension, Vitamin Deficiencies, etc. 

My family is very supportive and understanding - however, I find most comfort here on this forum; as you all understand what I am going through and I feel as if I can talk freely.  While my family tries very hard, they have not experienced the profound fatigue, aches, and even the fears that we all have. 


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Re: About ourselfs
« Reply #34 on: November 21, 2010, 06:55:04 PM »
.. Ti's a good idea, indeed!

I have been busy reading and learning soo much from this and other forums.  I don't usually say much and I am not sure I have ever introduced myself or not.   

My name is Cathy.  I tend to be fairly private about "things" going on with my health etc .. Anywho will give it a go

Been married for many years with two beautiful grown children.   Love sports, gardening, being creative also am very much in love with modes of transportation such as planes trains and automobiles.  Pretty much anything with wheels.  Not sure the whys and whats about that but I do .. :)

After many years are chasing my symptoms I was diagnosed late last year with Primary Sjogrens Syndrome along with a few other illnesses. Over the last decade I have slowed down considerably.  I do what I can when I can and perhaps over "do it" at times.   I don't think I have come "completely" to terms with this insidious disease.   Kind of the "don't think about it therefore it isn't"  type of mind game. 
Softball was the sport of choice to participate in but now it has become impossible to play.  Things just don't cooperate like they use too.   I like to cross stitch knit crochet draw,  all sorts of things but am hesitant about taking them on as I use too.  I find it hard to except that my body isn't the same as it use to be and never will be again.   
All of this taken in  I try very hard to be positive.  There are others with graver concerns than mine but that doesn't midigate what we all go through.  All of our concerns are as varied as the spectrum of colours.   I to find comfort in forums such as this one.  It is good to be able to come to a place where others understand and are able to relate to what each of us feels.  I don't feel understood nor can I expect my family to understand.  I do believe you have to "live it" to "get it" ...  Phew   trusting that makes sense here goes the post 


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Re: About ourselfs
« Reply #35 on: November 21, 2010, 09:38:25 PM »
Thanks, Navydad.  I love learning more about everyone here at SW.  My name is Melinda & I was born in & live in Oklahoma (go Sooners!) but was "raised" in a Chicago suburb from 5 to 11.  Got to see the Bears & Packers play once.  Dad was a race car fanatic (& avid golfer) so we went every weekend to the stock car races.  Still dream about the huge snow falls, outdoor ice-skating, sledding, etc. One time, we watched my little brother disappear when he walked out the front door & disappeared into a snow drift.  I can still see that little red mitten sticking up out of the snow!

Hmmm, I KNOW there are ghosts because my Mom came to see me shortly after she died.  Wasn't scary - just sad.  I was 36, she 62.  Thank heavens I got to say goodbye. Then I lost my brother when he was 43 & I was 46.  Unbeknownst to anyone, he got an infection on his aortic valve & when it perforated, well, they said it took less than 30 seconds & he was gone.  I didn't get to say goodbye to him.  Shortly thereafter we lost my in-laws, & finally my Dad in 2004.  He also died suddenly but he was 83, still working & had just played golf w/ his regular foursome the day before.  I miss them all dearly every dam day.  I have one sister, Demaris,  left from my original family. Got to grieve again when our only child, beautiful/stupid daughter, got screwed up on drugs.  So, DH & I are raising our 5 grandkids. (16,15,11,11,4) I pray for patience every day!  They are blessings but Lordy, what a lot of work!  Especially since 'Nana' got so sick.  They do keep me going though.  My husband of 40 years is my rock, my lover & my best friend.

I managed an ins. agency for 11 yrs & was then an asst administrator at a 30-acre retirement complex for 12 years.  Studied gerontology & loved getting hugged by the residents everyday.  Also got to use my creative side writing & editing the newsletter, correspondence, handbooks, safety manuals, etc.  Also got to serve punch, give marketing tours, decorate the clubhouse, ride the golf carts around the property, sing solos at programs, etc.  When they were sold to a conglomerate, I became a project manager for The phone company for 4 yrs before Primary Sjogren's got me & I had to resign.  Highly stressful job- every phone call & keystroke was monitored & everything timed..  Argh!

I'm spiritual, but not religious.  When I figured out that religion is mostly geographical, I studied many religions & found things in all I could connect to. In my youth I played clarinet, piano, guitar, sang in choirs & was part of an all-girl ensemble.  I also painted & played the snare drum. I write mostly dark poetry (my therapy) & am a voracious reader.  Love basketball, football & action & war films.  LeoLady because I'm an August baby.  In my ancestry, we have Patrick Henry & my Mom's great, great grandmother was a Cherokee shaman.  Sis & I have LOTS of ESP & prophetic dreams. Cool!

I love and appreciate this forum and consider all of you my friends.  Enough about me -  NEXT!    Hugs, LeoLady


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Re: About ourselfs
« Reply #36 on: November 22, 2010, 08:41:29 AM »
My name is Diane...I am 56 married to John for 24 years (2nd marriage) I have 2 sons 33 and 31


I swear all my health problems started in my 20's  when I had my appendix out followed by:
emergency surgery for a ruptured cyst on my ovary...ovary removed
ended up with peritonitis...hospitalized 10 days
6 months later hysterectomy
carpal tunnel surgery
3 years later tonsilectomy
then followed by fundoplacation 2 years after that
carpal tunnel....ulnar nerve transpostion on my left elbow

had a nice break for about 4 years then
diagnosed with hypothryroidsim and diabetes
liver biopsy diagnosed with Auto Immune Hepatitis

2 years ago I lost 50bs and doctor took me off of diabetes I am still diabetic but control it most of the time through diet...Then this year all heck seem to break Feb my Vitamin D fell to a 9...In April was diagnosed with a bacterial infection in my gut which I was on antibiotics for 2 weeks. Then my vision started to change after just getting new glasses but didn't hink much about it because I was on Cipro for the 2 weeks. In August I had and infected finger that had to be lanced twice...more antibiotics for 3 weeks....then the dry eye, blurred vision, sensitive to sunshine, dry mouth started with  more brain fog, muscle aches , yeast problems and boils etc...which led me here! I have bouts of constant fatigue but I push myslef to act normal because no one understands......had the Schirmers...tested positive...ANA negative and awaiting on other blood work as I type....Rheummy appointment next month. These are
milestones of my health. I have been treated for depression for years!(Around the time the gerds started)

I have a wonderful husband that tries to understand MOST of the time. I have 2 who is diabetic and hypothryoid. My one son has Graves and the youngest has high blood pressure since he was 28. (both physically fit) My father died at 54 with Pancreatic Cancer (also had diabetes and virtilgo) and my mother passed at 62 with a massive heart attack. (she was diabetic also and diabetes runs rampant through out both sides of the family) Looks like longevity isn't in my genes.

I do have a little shih tzu that brings joy to my life, I enjoy playing the slots whenever I daughter in laws yet or grandchildren. I used to work at the Cleveland Clinic for about 6 years then once I had the gerds I just felt like crap so I quit ...2 years later I had the surgery and yet it really didn't help. I used to enjoy riding our Harley with my husband but haven't for quite a while. We have and RV and like to travel although this summer we really didn't use it but one time :(.

 I do count my blessings that I have a wonderful husband and is good .... but it's GREAT when I feel up to par!
« Last Edit: November 22, 2010, 08:55:38 AM by Diane54 »
Sjogren's diagnosed Dec 20, 2010, Hypothyroid, Diabetes 2, Autoimmune Hepatitis, Mitral Valve  Prolapse, Gerds, Antiphospholipid Syndrome,  Synthroid, Paxil, Prilosec, Evoxac, Plaquenil, Tramadol, Simvistatin, Restasis, Baby Asprin, vitamin D, Januvia, Amlodipine, Gabapentine


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Re: About ourselfs
« Reply #37 on: November 22, 2010, 09:09:40 AM »
I like seeing the other paranoid conspiracists fess' up!   ;D

I'll tell the other ghost hunters something that'll make 'em jealous.  Last spring, before I got sick, we visited New Hampshire and we stayed at The Spalding Inn.   Yes .. owned by Jason and Grant.  As far as ghosts go .. it was quiet.  It even felt quiet.  I've got more spooks here than they have there. 

BUT it was very quiet and quaint and it had a fantastic view of the presidential mountain range.

Ya'll .... go if you can.  But bring your own breakfast food.  There isn't anything around for miles except the lunch and dinner that is served there.  Their breakfast ... well .. it just isn't. 


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Re: About ourselfs
« Reply #38 on: November 22, 2010, 09:56:41 AM »
Hi, I'm Dawn, and feel very blessed to have found this website to learn and grow from.

I'm almost 40, a Christian, no kids other than all the furry ones my husband and I rescue and adopt out on a regular basis,
and have had odd illnesses for many, many years...have been worked up for everything from M.S. to leukemia to lupus,
until finally getting my Sjogren's diagnosis from a positive Anti-Ro blood test a few weeks ago. It's both a blessing and
a curse to get your final I know I'm not crazy imagining all these weird symptoms, yet it's a burden
to bear, for sure...but so helpful to walk with others with the same diagnosis. I love to exercise, read and watch movies, and
spend time with my furry kids and my husband. I try to remember to count my blessings daily, and probably try even
harder to stay off of meds!! ha ha ha...just started 10 mg of Pred. and .25 mcg of thyroxine each day, and am noticing
some relief...on really bad pain days, I allow myself one Vicodin in the evening to enjoy a few hours of being pain free. I just hate taking meds...must be genetic, because my dad is the same way... :) Things I dislike other than taking meds: rude people, housecleaning, and housecleaning  :P


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Re: About ourselfs
« Reply #39 on: November 22, 2010, 11:03:02 AM »
Again,, its so nice to see everyone opening up about themselves ,, It puts a story behind the name, not just someone adding a post to a thread, I have been put in charge of thawing out the turkey this week, I hope I dont screw that up,, I have to wear gloves to take it out of the frig,, cant tolerate teh cold,
  Our deer season opens next week, this ought to be interesting,, I am having a hard time holding onto a fork,, let alone a rifle,, my oldest son will be hunting with me as is the custom,, I have a suspicion that this year may be my last, at the rate this neuropathy or what ever it is , is spreading,, well,, I just dont know
 the backyard brawl is this friday,, Pitt VS WVU,, should be good game,,
  I wont mention that A** beating the Steelers took from the Pats last week,, glad I went to bed,, but hope everyone keeps posting on this thread,, I mean it,, its really nice to read and helps take our minds off things for a while,, and we might even make a new friend along the way,,


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Re: About ourselfs
« Reply #40 on: November 22, 2010, 11:10:12 AM »
NavyDad.....Loved the game yesterday! Complete blow out but seems they played the refs more than the Raiders! ::) Glad we won anyhow! Stairway to 7 I hope!
Sjogren's diagnosed Dec 20, 2010, Hypothyroid, Diabetes 2, Autoimmune Hepatitis, Mitral Valve  Prolapse, Gerds, Antiphospholipid Syndrome,  Synthroid, Paxil, Prilosec, Evoxac, Plaquenil, Tramadol, Simvistatin, Restasis, Baby Asprin, vitamin D, Januvia, Amlodipine, Gabapentine


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Re: About ourselfs
« Reply #41 on: November 22, 2010, 06:58:54 PM »
63 yrs old.  Teach Part time.  Hobbies:  birdwatching, travelling when I can, reading, enjoying cultural events, hanging out and acting silly
one dog, one cat , one husband:  all my boon companions--could not do without them
One daughter,  4 adult step children, 3 grandchildren--all wonderfu!
Today was a fibro flare due to the weather.  I taught my class, came home and took aspirin, went to bed for a few hrs.  So grateful I can do that!!


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Re: About ourselfs
« Reply #42 on: November 22, 2010, 07:20:43 PM »

My name is Nancy.  Nans, my screen name, is what one of my brothers calls me.  He too has autoimmune diseases.

I am 55, have been married to my dh, Brad for 28 years and have two sons - 27 and 24 and a daughter, 23.  Thankfully, all are employed (although our middle child still lives with us).

I was born and raised in New York, but have been a Hoosier for nearly 28 years.  I met my husband in college (Alfred University - Alfred, NY).  Brad is a native Hoosier, but we ended up here because it's the only place he found work during the last recession (early 80's).  By the grace of God I was able to be a stay-at-home mom and also have a small dairy goat-related business.  I made and sold raw goat milk cheese commercially for a few years but the cost of the mandatory testing made the small profit not worth the time and effort.  I still sell goat milk soap and, of course, registered Alpine dairy goats.

I was diagnosed with Sjogen's in August 2009.  My husband has been so supportive - I am so blessed to have him in my life.  I am also blessed to have found this forum.  You all have been so kind and helpful to me - thank you all so much.




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Re: About ourselfs
« Reply #43 on: November 22, 2010, 09:58:37 PM »
I am Bel... wiccagal comes from a reference to my religious/spiritual belief in that I follow a wiccae path.  I am an Aussie... live on the smallish island of Tasmania..  I just recently turned 34... I have a 10 year old daughter who is wonderful and amazing and I thank the goddess for blessing me with her.

I am still working but am down to part time :-(  which makes me sad.. I use to place alot of pride in my career and what I did - pre dx I was a corporate facilitator now I work for the government.

I was for 9 years a single mum but have finally been blessed with a wonderful partner, he came into my life just after my dx so this is a journey we have taken together.. good in someways - no comparisons to the old me but I would have loved him to have met and known the old energetic happy healthy me..but you can't have your cake and eat it too!!

I do alot of alternate therapies and energy work..  work alot with Chakras and the bodies energetic states.  I read Tarot, guide people and have an awesome herb garden. 


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Re: About ourselfs
« Reply #44 on: November 23, 2010, 12:38:49 AM »
Navydad, you are a genius!  I love getting to know everyone a little better.  Before I tell you about me, I just want to say there are no 'ordinary' people on here - every one of us is struggling with health plus all the twists and turns of life.  For those of you bringing up grandchildren, I want to tell you how much I admire you. You may feel you were doing the only thing you could do but your gift of love and caring is amazing.  Bless you.

I'm Ailsa - this was the first forum I ever used, back in March 09, and I didn't know anything about usernames and stuff then.  Hence, I am stuck with my surname! I would have probably chosen something mystical like Starfrost!  I'm 50, diagnosed with SS last year but the rheumy I changed to in Feb this year said I have RA.  It's been a hard year as the RA has been hard to control as it was not treated for a year.  I've just gone through the second screening for ant-TNF treatment so am hoping it will be under control very soon and I can get a bit of myself back.

Aside from illness, life is busy.  My husband (and only boyfriend) left me 14 years ago when our boys were 11, 9 and 6 and daughters 4 and 1.  He was very active in church an the whole thing was dreadful.  Till then I'd been a stay at home mum, though I had an English degree.  I trained to teach when my youngest started school and that year was the hardest ever.  I've been teaching 10 years now.  I'm also the only child for my parents, both in their 80s and unwell, so I call in on my way home each day.  I still have 3 teens and a 20+ at home, so life is never dull - or quiet/tidy/simple/cheap!

I love the support and advice on here.  I don't know another person with RA or SS so I really value my web-friends.  Look forward to hearing some more about us  XX Ailsa
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.