Author Topic: About ourselfs  (Read 9688 times)


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About ourselfs
« on: November 19, 2010, 02:52:17 PM »
I am sure this topic has been on here before but I thought I would start it again,, just tell everyone about yourself,, nothing major,, just alittle to put something behind the screen name

My real name is Buddy,, its actualy Clarence,, but Buddy is better,, (blame my dad)
I have two sons,, Mike and Matt,, 31 and 24
Navy dad is a screen name I have used for years,, my odest was on Subs in the navy for 6 years
My wifes name is RHonda,, we have been married 36 years,, Yes we married young
I am a die hard Steelers and Pens fan,, I wish I could go to more games,, but I cant tolerate the cold at a hockey game and cant climb the ramps to get to the steeler games
We have one dog,, a red Doxie named Bo,, and my cockatiel thats 17 years old and still going strong
I was a electrician for 34 years,, before all this nonsense started,,
I had hobbys,,loved fishing,, had to give that up,,
Still try to hunt,, but its getting harder to hold up a gun and actually wrap myhands around it
I loved to metal detect,, found alot of stuff with it,, but the hands are gone,, Sigh
I still have (some) belief that there is a loving God,, but when I see the suffering on this earth,, I often have doubts,, (thats just my view no need to get roudy),,
I love cominghere,, I have found nothing but love and compassion,, I only wish the rest of the world wasl ike this,,
Bless you all


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Re: About ourselfs
« Reply #1 on: November 19, 2010, 03:18:04 PM »
Hi navydad, great topic!

I'm Shani and 16 years old, born and living in a small country named Belgium.
I still live at home with my mom and little brother.
He's 9 years old and a little troubemaker at times, but I love him dearly.
I am not going to school anymore because this is too exhausting for me.
So since this year I havfe started homeschooling, not very easy.
but I am responsible  and wise enough to study on my own.:)
Before I got diagnosed I loved sport: Sprinting, badminton, football, basketbal, swimming
I had to quit those because of being sick, having pain, fatgiue.
I do plan on going swimming again if I feel better and have the energy to.
But now I enjoy making puzzle, beading, watching movies, talking to people that know what it's liek to have a AI disease (On here for example) I also like to write poems, and music is a big passion.
I plan on learning to play electric guitar, but it is still laying there looking pretty because of my hands hurting too much at the moment.
I'm still trying to accept that I have chronical illnesses-many things I can't do.
It's not easy, especially when you are young.
But I get my strenght from God, my family and friends.
They make this a lot easier to cope with.
Just like Navydad, I love posting here too.It's a great community with very lovely people.


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Re: About ourselfs
« Reply #2 on: November 19, 2010, 03:42:15 PM »
Great Idea Navy Dad-

My real name is Phyllis.  My screen name is Lucy and has been on several boards..  A long time ago, a friend and I "played" Lucy and Ethel.  I am a tad
over 60.  I have been married since I was 18 y/o to Ron and we are both retired.  We have one daughter whose name is Rhonda.  I see several Rhonda's on here!  Rhonda shares autoimmune with me as she has Type I diabetes.  She is 40ish and single, with no kids.  We are very close as a small family.
I was a secretary during my working life.
My husband was a steel worker.
My life was devastated by Lasik surgery in 2000.  The outcome was bad, vision wise and dry eye wise.
Sjogrens diagnosis came a bit later, then breast cancer, then fibromyalgia.
I am a hockey fan, being born and raised in Michigan.
I like to do water exercise but lately have been too fatigued to go.
I had one partial knee replacement which is loose and will need a total replacement.  The other knee is also ready for replacement.  It's a question which one first and I think I'll probably have one in early spring.
We enjoy going to Indian casinos (playing penny slots) and my husband likes to fish and hunt.
We do not have any pets, but I have a grandcat named Whiskey who is almost 20 years old.  Whiskey had a sister who my daughter had to put to rest a couple of months ago at 19 y/o.
There isn't anything I don't like about this board.  It has helped me immensely.


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Re: About ourselfs
« Reply #3 on: November 19, 2010, 03:46:48 PM »
Hello, my real name is Mary and I am 43 years old. I am married to Jef and we have a 15 year-old daughter named Hennessy. My daughter is the light of my life and the reason I get out of bed everyday and fight to continue to live. We have two cats named Oreo and Churchill (both boys) and they are like our babies and they are spoiled. My husband and I are both teachers...well I was before I became too sick.  I like ghost stories and shows along with scary movies.

I live in a small town not far from Pittsburgh and am also a Steelers and Pens fan!!!  I really don't have any hobbies..never did really.  I used to like to eat out with my family at various restaurants...liked trying new places all the time!!!!  Now I can't because of tummy problems and no appetite:(     I love nature and hearing the birds sing in the morning.

I also love to play computer games like frontierville and word games when I am able. I am proud of my daughter because she is a good girl and very smart.  My dream is for her to attend an Ivy league college and become happy and successful.

That's me in a nutshell..........Mary


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Re: About ourselfs
« Reply #4 on: November 19, 2010, 04:43:19 PM »
This is a great post Navydad!
My post name comes from a nickname my husband calls me. He got it off of Jimmy Neutron and it has stuck with me ever since. I am 36 years old.  I have a son whose 9 and a daughter whose 3.  I have been married to my husband for 10 years but ironically we've known each other since Middle School, just never dated until years after.  I worked with the airlines and then became a stay at home mom with my second and that's when I became sick.  I got sick pretty much overnight and have never been the same.  I was diagnosed with SJS in 2009 and I was just diagnosed with Autonomic Neuropathy.  I used to love knitting but my hands don't work very well in doing it anymore.  I can totally relate to all of you on here who have problems with your hands.  IT must be more SJS related than we know.
I would love to become an advocate and really speak out for those with AI disease and Neuropathy.  I think both diseases and as well as the one who has the disease are highly misunderstood.  How to begin I don't know, but I will get there, and I will become a voice!
I am learning to try and find new hobbies but it's hard when my hands don't work.  I don't even post on here much anymore, my hands don't cooperate and I get frustrated.  :P
I hope many others post for this is a great post to get to know others better.  Take care everyone!


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Re: About ourselfs
« Reply #5 on: November 19, 2010, 05:35:09 PM »
My real name is Betty.  I am Pisces24 as I was born on February 24th, 1957.  I live in Eastern Iowa and found I prefer the Midwest to anyother place - except for the snow.  Got to have my green grass, trees & squirrels.  ;)
I was an only child and my dad became disabled when I was 13.  Since a teenager I've been "grown up" and used to taking care of things my folks could not physically.  When I started working, I lived with them so we'd all have enough $ to get along on. My folks finally got some financial help when my dad become terminal and had 6 mos to live. He passed away in 1993 and my mother passed away in 2001. I have no close family anymore just 4 1st cousins who all have their own kids, grandkids, etc. so I am the "odd one out."

I work in the pensions field and bang on a computer all day. I volunteer for a group that helps elderly disabled people keep their companion pet. My hobby is genealogy and I am trying to get back to playing the voilin again. I have 5 cats (planned on 2, talked into one and rescued 2) but I am not a "weird cat lady". LOL  Just part MUSH as my friends say! :)

I stared having "weird" blood work in the late 1990s and about 2003 my gp got concerned enough to send me to a specialist, then another, then another. It is just as scary when you think you feel ok and the doctors say you are not as when you don't feel ok and they can't find the problem.  I was finally diagnosed with Sjogrens at a teaching hospital in March 2003. Gradually other "things" have come up so I am being monitor by 3 -ologists now (My staff!)

I am thankful my SJS symptoms  are not to the point where I can't work or they are bad. Trying to keep a good outlook and plan for eventualities but you can't always do that. Guess I got that way from taking care of my folks. Like most current and former caretakers, we have to learn to "and how to" take care of ourselves.  So I am 53 and still in the learning stage. ???


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Re: About ourselfs
« Reply #6 on: November 19, 2010, 06:43:34 PM »
My name is Cheryl, and I'm a chocoholic.   I'm 58 years old and have been married for 38 years.  My 3 children have blessed me with 5 grandchildren (soon to be 6!)  I retired from teaching a couple of years ago, and now I stay busy being "Mamom."   

My mother had Sjogrens, too, so my diagnosis wasn't so weird to me.  I am a 10 year cancer survivor. 

I enjoy cooking, reading, and my family.   My faith is an important part of my life.  I look forward to reading posts every day that I can.  Chats are fun, too; join us when you can!
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Re: About ourselfs
« Reply #7 on: November 19, 2010, 07:00:40 PM »
Well, I'm obviously not very original with screen names...yes, my real name is Anita.

I'm 46, married to Joseph and we have one son, Kenneth (20).  My husband is retired Army, so I've lived in Virginia, Massachusetts, Arizona, Texas and even Germany.  Currently I'm tucked away deep in the Shenandoah Mountains of Virginia with our two cats (Tyler and Mac), and one dog (Princess).  We also have several regular black bears (Brutus, Bertha, Bruno, and Buster) that come visit (sometimes daily) in hopes I left the bird feeders out...LOL

Prior to falling apart medically in 1996, I was in property mgmt., managing apartment complexes.  Since then I have been disabled, but home-schooled my son which helped keep the wheels churning.

According to my adoptive mother, I had unusual symptoms (many of which were neuro) from the start that no doctors understood.  Ironically, so did my son as an infant/small child.  Both my son and myself did "okay" during the adolescent years into young adult (which is where he is now).  It's wasn't until my late 20's that more dryness and unexplained symptoms appeared, and early 30's when all heck broke loose.  My signature line tells more about my current diagnosis.

It takes everything I have working my simple veggie garden and homemaker tasks.   Even with my challenges, I stay fairly positive and focused on acceptance and what I "do" have vs. what I've lost.  Although, like most of us, some days are just tough.

52 yr old SjS, APS w/strokes, Autonomic Neuropathy, PN, Nephrogenic DI, (CVID) IgG def., Cushing's, Asthma, Gastroparesis.  Sero-neg w/+ lip biopsy.  Meds: IVIG & pre-meds, Arixtra, Aspirin, Plaquenil, Cardizem, Toprol XL, Domperidone, Nexium, Midodrine, Symbicort, Fentanyl, Percocet, Zofran

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Re: About ourselfs
« Reply #8 on: November 19, 2010, 08:29:18 PM »
Guess what? My name is Joe. Jan and I have been married for 38 years. We have two daughters that have families of their own.

I have not used my screen name since the late 70's when I brought down darpa net with my programming partner as an extra credit project that got us kicked out of college. I spent time in the USAF and was recalled by the VA to be part of the Montauk Project.

In 1983 an auto accident triggered Fibromyalgia. I was paralyzed on my left side from the accident, then from the waste down after a mylogram. It took 7 years to Dx it the first time. I facilitated a chronic pain support group for 6 years. I had remission for a few years or I learned to manage it better. It took the new doctors another 7 years to Dx fibro the second time. I was dx'ed in with lupus in 2007 and Sjogren's in 2008. In 2010 I was Dx'd with depression and ADHD.

I have degrees in computer programming and electronics. Before being laid off in 2002 I was a Hicap designer for Qwest. My last job was one hour per day four days per week teaching Mad Science to children in grades K-5 as a community education program. I am a teaching Reiki Master (hands on energy healing). I give seminars at Sci-fi conventions on Reflexology, Reiki, Massage, Energy healing, and Electro-herbalism.

I have explored a number of alternative therapies to find what works for me. As a school project I created the Chakra Force Web site in 2004. I have been exploring electro-herbalism since 1976 when I took a course in electronic music.

I used to have rental properties, and vacation properties that have been lost through this illness. We lost our last duplex in 2009 and are now waiting on Bankruptcy. I have been turned down for SSDI. I am in the process of getting information to refile.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
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Re: About ourselfs
« Reply #9 on: November 19, 2010, 08:44:00 PM »

My name is Kerri, I'm 33 and married, we have 4 kids: 2 boys and 2 girls ranging in ages from 14 to 2. Also 3 cats and a dog, i keep busy! Up until I became pregnant with my 3rd I worked as a cake decorator, I've been a stay at home mom for about 5 years now and my Dh is an engineer. Photography is a serious hobby of mine, I love gardening and until recently I was really into hiking and running but I haven't felt well enough to do that just lately. 

I knew something was wrong with me after having my 1st baby. Within a year I developed a few lupus discoid rashes that I couldn't identify at the time, low grade fevers, fatigue, dry eyes,'etc. I'd have healthy periods then spurts where I'd have to go to the Dr often and I would start feeling crazy because something was wrong but nothing was found. Once in my mid 20's I had bad joint pain in my hands and feet and i was tested for 5ths disease and sent on my way when that wasn't the problem, ha! Basically the pattern was: I would try to get help, get frustrated and give up, then I would start feeling better and forget it until the next time. Lather, rinse, repeat...But having my last baby made things blow up. That and my 25 year old sister passed away unexpectedly only a week after I had him. The birth and the death together were a very big shock to my system and my spirit and I developed full blown AI disease shortly thereafter. Finally after years I was dx this past June. I'm glad I found this place, it's been very helpful and supportive. It's nice to not feel alone, no one around here has even heard of SJS.


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Re: About ourselfs
« Reply #10 on: November 19, 2010, 08:53:30 PM »
As u probably know my name is Kelly..I'm 46 and married when I was 18..I've been married to Mike for almost 28 years. We have one son Matthew and he's 22. He just graduated college and is now a Raiologic Technologist. My husband is in his 30th year of teaching school. He teaches Computer repair and Electronics to high school kids. I used to work as an in home caregiver but had to give up due to the illness. I live in West Virginia on top of a mountain with an elevation of 3200 ft. We get ALOT of snow. I have an inside cat that thinks she runs the show and most of the time she does..two outside dogs-a brother and sister black labs and they are about 10 years old. I love to be outside, but do not get out as much now.


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Re: About ourselfs
« Reply #11 on: November 19, 2010, 09:12:49 PM »
Yes, this is a great thread, Navydad!

My name is Melinda. The screen name came from former passwords I've used over the years.

I am 54, been married to my husband, Ray, for 23 years and we have a daughter, 22. I'm also mom to 2 sons, (both single) ages 30 and 34, from my first marriage. Oldest son lives in Ohio, the younger one in Kansas and our daughter is in Ohio and got married last fall. My husband and I grew up in Ohio, but moved to SE Kentucky in 2008 where his mother and extended family live.
I've had a "varied" career route, you could say. I've been a server in 4-star restaurants, restaurant general manager, staff member of Habitat for Humanity, worked as the coordinator of the federal food program for a daycare and held several customer sales/service jobs. The last was with USCIS (Citizenship and Immigration) and left that position in Feb. 2010 when my physical condition would no longer allow me to drag myself to my desk.
My life changed Feb. 28, 2009 when I went on a 12-hr. shopping trip with family in a larger city. Next day I couldn't get out of bed. I had very few physical problems until then, and felt lucky to be 52 and have great energy and strength. That all turned upside down...
The beginning of Nov. I was approved SS Disability, based on Sjogren's, Fibromyalgia/Chronic Fatigue and some unspecified arthritis, and feel lucky it took such a short time. Since I'll be 55 in Feb. I like to think of this as "retiring due to disability". Puts a better spin on it.  ;) I would rather still be working, but that's not happening.  Now I am learning how to "be the new me" and feeling very blessed to have the community here to help with that. Looking forward to hearing other's info!
Take care,


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Re: About ourselfs
« Reply #12 on: November 19, 2010, 09:38:36 PM »
This is a good idea, but I just want to mention that I have read many warnings lately about giving out too much info on the internet as the "bad guys" have ways to hunt us down. I am so computer illiterate that I don't need anyone screwing with any credit card info or anything else cause I would have to destroy my computer and start over. I'm am that bad at troubleshooting.

So, I am Irish and I am 1/2 Irish and married for 40+ years. Like the change in seasons in MN and love the cooler weather, and yes, I will admit that I love winter. I used to love being all bundled up and out shoveling or working in the barn. I enjoyed being outside during those warmer blizzards with the sun still shining through the clouds and snow and the sun dogs in the sky. It would invigorate me. On the other hand the 80 below wind chills of years ago were not fun. I have been a "old soul" all my life and am frugal and old fashioned in many ways.

I am, to my surprise, a tomboy, which is good, cause we had 3 boys and hubby traveled for his work and was gone from a couple of nights a week up to a month at a time. I started out as a wimp and had to "grow up" and get with the program or I would have lost the battle. Raising boys with Dad gone is truly a challenge.

I am also mechanical and would be sent to pick up parts for the boys engines. I understood more talk about car engines than I did about sewing. Of course, I have forgotten it all now. We always had the neighbor boys around working on their cars, snowmobiles, etc in the shed and hubby was right out there with them on the weekends. We didn't watch much TV in those years as we were busy with work, hobby farming and the boys always worked. I kept the home fires burning and took care of all the business, lawyering, anything that needed to be done. I also worked part time to full time as a registered nurse and I really miss it. I guess I was a born care giver.

So, I am still in the same house the past 33 years, love the sunrises and sunsets in the country and love looking out across the fields. Being unable to be out and physically active is one of the things that bothers me the most about AI disease. I miss being out in the yard and garden. Also, loved to paint outside buildings and work on projects with hubby. We did some interesting things over the years. I was taken off lawn lowing duty several years ago when I ran into the barn twice. With my balance issues I got really dizzy turning at the end of each row. Some might think  Yeah!!! Me, I am not happy about it.

I used to love it when hubby and I mowed in tandem(we each had a riding mower) with our very, very old Allis lawnmowers late in the evening in early fall when it was cool and the engines made that neat sound in the air. Like I said, I am a tomboy. Also, we never paid to get anything fixed as hubby and boys repaired everything.

I have always thought that the Nov of 1988 (when hubby was gone and we had to have the septic tank dug up and new drainage pipes put in) and I was down in the hole digging to cover pipes with dirt by moonlight and yardlight, that I was never the same after that. Always wondered if there was some bacteria in the soil that got to me in spite of wearing a mask. It seemed like I got an infection and my thyroid stuff got worse. Probably stress---again---there is no way to live without it.

Anyway, now I read like crazy and hit the thrift stores for books and stuff. Take care of the house some. Hubby and I take turns taking care of each other. If it wasn't for bad health we would have no health at all. We also enjoy our grandchildren and have 4 grandsons and one grandaughter. Being there for our kids is top priority in our lives. We aren't good for much else than that anymore.

I am addicted to talk radio and cable news and like to keep up with elections.I also read newspapers like crazy. Got that fascination from my dad. I used to do a lot of stuff now I just "am". Irish ;D ;D


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Re: About ourselfs
« Reply #13 on: November 19, 2010, 10:33:14 PM »
Hi! My real name is Joanne. I chose "Jozee" as my screen name because back when I had a functioning brain the most wonderful woman in the world taught me to be a bank teller. Then years later I was her supervisor at a Credit Union. She always called me "Jozee". She moved away but I have the most fond memories of her.  :)

I live in the Eastern part of Oregon. I have been married to my husband twice. Once when we were 17 for one year. Then 17 years later we ran into each other again and remarried. During our first marriage we had a son that was born shortly after we divorced. When our son was 5 1/2 months old my boyfriend picked him up from the baby sitter and beat him to death while I was at work. I found my son on the floor next to my boyfriend who was passed out from drugs and alcohol. I HATE DRUGS AND ALCOHOL. I had a second son with my second husband a few years later. Our son died when he was 11 days old. Half of his heart did not develop properly. We had 10 good days with him then he suddenly got sick, took him to emergency, they found his heart was not developed and before we could find a replacement heart he went to be with Jesus.

For as long as I can remember I have been a sickly person. As a child people would tell my parents to stop carrying me or I'd be spoiled. What they didn't realize was they carried me because my legs hurt too bad to walk very far even as young as three. Doctor after doctor. Year after year. Can't find anything. Maybe arthritis. Maybe bursitus. Wear leg braces. Don't wear leg braces. Exercise. Don't exercise. Off and on told it was all in my head. At 21 a doctor told me it was Fibromyalgia, gave me amitrytaline and sent me on my way. Kept getting worse. Once was sent to psychologist who said I was basically nuts and needed to see a psychologist on a regular basis. So I think...maybe so...doubt I've been nuts since I was three but what the heck. I'll do anything to get better. Went to the psychologist for 4 visits. She basically said, "I have no idea why they have sent you here. There is nothing mentally wrong with you. You've dealt with your loss.This is so obviously a medical issue." So I started what someone earlier described as the "lather, rinse, repeat" cycle. Later told I had MS. Then a few months later told it wasn't. Was then sent to a Neuro (jerk) who said he thought I was just getting older, needed to exercise (right, I can barely walk)and that it was all in my head. BUT he did say there was something in my blood work that was different. I think it was SSA or something like that. He sent me to Rheumatologist. Got diagnosed with Sjogrens after exam, medical history, blood work, and lip biopsy. He felt there was more going on. Sent to OHSU teaching school in Portland Oregon. There I was poked, prodded, cut into, sucked dry of blood and told I have small fiber sensory neuropathy. I also have Costrachodritis. GERD and Sleep Apnea. Still trying to go a full night with the mask on! Have had issues with my brain not working very well. In fact I posted something about that  while back. My new Neuro slowly took my off Gabapentin and is slowly putting me on Zonisamide. It's supposed to do the same as Gab but not mess with your head. OMG! If anyone is on Gabapentin and can't think....ask about trying something else. I am almost all the way off it now and it feel like the light are back on in my head. Almost lost my job because of it. Right now I can hardly walk again tho due to switching because I'm not up to the higher dose yet. he says it should eventually start to work for the nerve pain like the Gabapentin did (to a degree gabapentin helped). I now take Zonisamide, Provigil, Evoxac (for dry mouth), Omeprazole (for gerd), oxycodone (for pain) and Numoisyn Lozenges for dry mouth.

I sell Radio Advertising. On good days I go see business owners. On bad days I voice commercials and write ads. On very bad days I lay in bed and watch Oprah! I have never been a depressed person. Once in a while I will take a day to cry about who I am not. Then I pick myself up and be proud of who I am. I am a workaholic who is having to learn to leave the dishes in the sink or admit I need help. My goal it to work as much as I can this year to help us pay off bills so next year if I have to quit working we can better handle it. Hopefully my body will let that happen.

Thank you all for this web site. I have read it for a couple years before posting. It's been so helpful to me to see you all have had the same issues I have had. It keeps me from running to the doctor with every new thing. I can look for posts about it and see that it's a common issue. Sorry, never meant to spell so bad or write so much..... :o


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Re: About ourselfs
« Reply #14 on: November 20, 2010, 04:52:30 AM »
Good to see everyone telling a little bit about themselves,, as far as I can tell were just a bunch or ordinary people with unordinary problems,, all of us going down a road,, some harder and with more bumps then others,, but all helping picking up the ones that stumble and lend a shoulder to cry on when it beomes to much,
 Today I;m struggling to walk,, legs just feel weird,, and of course the arm pain that never stops,, I wish I had a answer