i really enjoy you as well! When i hear your story my looks like not so bad in many ways..but than in other way i have had many of same problems.
What is MSRA? I hope you do not mind, that I ask when I do not know what medical term etc is or stands for...Is it yeast? multi symptom rheumatoid arthritis? Lol! can make up things...so anyone reading this last sentence...this is all in fun..no i do not really know what MSRA is and hope Astrid will tell me.
I been on methro for few years while working...to tr working. I took the compound since my husband, who is CHP officer( Cop) and has injected our lab with allergies felt he could not give me shots Lol!. I am too tired to list all things i have been through but a number of them.
I tried to keep working for as long as good....was in advertising for Sac Bee..it covers all of Northern Calif up to Oregon Border so a good size paper. I was extremely lucky to have built a reputation of being a hard worker plus I liked to learn. I wanted to be a Vet all my school years. I grew up in Napa/Sonoma areas and on way to our tiny cabin that we built at Tahoe we pass UC Davis...one of the best Vet colleges in US. Everyone would say...after hearing me say it so much that is where loree is going to college. Sadly...the cabin (which did give us many fun hours) was my college education money. lol! i guess one must laugh
You head maybe about my older brother, 22 months ahead of me. My mom was married and her 1st husband died from polio in matter of few days. She had two small children. My oldest sister who is 4 yrs old and than my brother, me and my younger sister is who is 4 years younger and she has my father. Yes my mom married fast..within 6months...yes they had to get married though my mom denies it my father told my husband after few drinks up at the Cabin for guys only weekend. Just fits....and explains a lot of my childhood how my mom would cry on my birthday etc
But here is interesting part...My brother is my half brother technically though never felt it. Everyone called us the twins...he was short for his age and we have same quiet personality..where two other sisters would like to be center of attention.
When my mother was pregnant with my brother they were doing the nuclear testing out in the Nevada desert. She never forgot that some of the fall out came out her way because she was pregnant. My brother was much more sick than i his entire life. As child he grow things,nodules, bumps etd, on his body normally around glands..i recall one on his neck and they used accent ...a meat tenderizer of all things! they never knew...he had severe allergies hay fever..where i had severe allergies to poison oak, sumac etc. I got severe sore throats...where he grew things on his throat. We both had sensitive tummies...He has esophagus that needed to be stretched so he could swallow...about every 3months.
By the time i was diagnosed they were doing a study on us since we were half siblings which made us rare. Than when i said about nuclear testing...they included us environmental studies as well. Plus my mom has miscarriage before my youngest...so kind of goes my brother got hit hardest in uterus than i ...miscarriage and my little sister was fine..nothing has come out. Our older sister only got psoriasis on her feet in her 30's and now she is 60 so some RA.. Both her and my brother smoked...she quite in her 30's when pregnant.
We both had got pregnant at same time... probably 4th of July party at her house! lol! I miscarried and she had Adam. My poor sister has always felt like id resent it....but never even ac-curd to me till she said it. I gave up trying to get pregnant after about the 4/5th miscarriage...was just too painful.
My brother on the other hand...got married to a very nice woman...and had 2 daughter in the 80's. Both seem so far pretty healthy, younger one has had her dad's allergies to plants makes her eyes water 'n itch plus she has bit of depression all of her life. Older one a i wrote has been healthy except off and on her legs hurt and she got malaria in Ghana. Both are smart like their Dad...oh at one point..poor guy was accepted in his choice college for architectural which was great accomplishment to get in....than his dr found nodules in his lungs...they thought it might be TB(in 1971) for timeline..so they stopped him from going...sad part is they ruled out TB about day past last possible deadline..classes had started. That hurt him greatly. began the great torture game of biospies in his lungs!
My poor brother has had more horrible tests done to him than anyone i have met....i have had my share. He and i would think of games to play to get through them. I was once having a barium enema and the in patient person had coded so i am on table with my butt hanging out and they are doing cpr right next to me!! I was scared enough but that did it!! yes i still did the test.
So both my brother and I had throat issues , sensitive stomachs... stomachs pains both from food and stress.. intestinal problems for same reasons too. I had early kidney problems...he has silent kidney disease and lost use of one about 70% and other one 10%. Here is thing i found that says it about my family best...
I tried to give him one of my kidneys....of course they said no with my history...but i tried to talk them into it all the same. My younger sister who was RN by now...thought of it when he was in for one of his hospital visits. Thy did not get along...he thought she was spoiled...she was mad at him for something had said to mutual friend...all stupid. She said that she knew very well about my kidney problems since she took care of me...my mom just left and went to work lol! No..she had paid sick leave so could have stayed home...plus they wanted me in hospital but they terrified me so i begged to have her try and if my fever went up one degree she take me to hospital.
So..neither of my parents...my older sister never once thought of it. He made me promise to not bring it up to them,had to be their choice he said. My brother never spoke of how sick he was to his friends not even his best friend. At his funeral...so many of them came up to me and said they would have gladly given their kidney. Which has haunted me...should h have gone against his wishes...plus his trunk had bumper sticker that said drive drunk i need your kidney! So that should have been clue. My husband also tried but my brother pointed out likely hood of him being injured on his job...he did not want him to take that chance. He still went and was not match.
I never understood this...how his own mother who i know loves him and my older sister who did too..step father who is sick man but did adopt both kids so they have his last name....none of them thought of it...even his own wife!
This has caused me great pain...and just one of many ways we are so different that do not understand it at all.
It did occur than rationalizations came in to play so i guess they could live with themselves...but they excuses do not hold up since they had years in which they could have been tested and done.
They are kind of people..out of sight, out of mind.. He died at 34 from turning septic after another bio spy to his lungs....he also was just very tired and in a lot of pain every day which, like me, he tried to hide it behind mask on his face...but to me it was clear as day how much he hurt. His daughters were 5 and 3...yes i drove his wife down to their other grandparents to tell them their father was dead. Talk about hard thing to do! But i am glad i was there for them and for my sister in law.
I kept was down to 4 days per week by than...he died on fri/sat....i worked sundays...papers always come out!! no one i could call to replace me ..but i was not thinking right..so went in...and did it..left a note for my boss saying would not be in for about a week if that was okay.
I always was close to my brother and his family....when i was lost the last baby i was about 5 months along so needed D&C but doctors were hoping i just bleed out....it was my brother who took entire afternoon off and brought his family/kids over and took me to chucky cheese to take my mind off it lol! He and his wife always let me have their kids as much as I wanted to help with my loss. So once he died....i helped along with both grandparents to raise them while she was at work. It helped me greatly.....
Only thing ...it taught me how when i got sick and i had to rest that having children with chronic illness brings it's own set of questions about how fair is it to the children? I know i scared them more than few times....passing out at the movies! ..i just deal with it as best i could....i know the oldest one..one time just had to ride with me back from Tahoe because i been very sick up there....she was afraid i was going to die like her dad..and had to reassure her i was just sick ...not that sick.
my joints in my feet kept trying to grow together so i kept having surgery on them...other wise ...except for how sick i get if i got over tired. I was hiking and even back packed one summer. I had problems with my eyes off and on..but had great ophthalmologist as well as podiatrist, Rheumatologist, Physical therapist, dermatologist and last but most dear, my counselor.
Things really hit the fan...after I left my job and moved up here to MT Shasta. I as in and out of surgery for 3/4 years constantly. Even became septic from a frozen dinner....which had nothing to do with Lupus but as health dept did when they tested it....healthy people most likely have bout of diarrhea..i got septic!!
One thing all along despite wearing wide brim hats always and sunscreen i still got precancerous spot on my cheek. It was frozen off from mid 80's up to past 2000 when they finally used this acid cream. I had that butterfly rash all my life....so think really i had lupus all my life just seems younger i was better i could fight it. Older i get the longer flares lasted more pain i was in etc..just magnified. I left my job in 97.... i just felt i could no longer do quality work that i felt customers deserved. I was left with door open in other words i can go back if i felt better.
I have had pleurisy few times, thyroiditist which all doctors on the floor came in to see since it was so rare back than lol! Yes my dr asked my permission first. They told me eventually it will go out so at this age i need to watch it. I have endocrinologist that works with my doctor and he checks me out at least once a year.
I have so many things..some tied into the lupus others not....like partial hysterectomy was not because of lupus just part of menopause going wrong. I did get fibromaylgia about mid90's but i had not heard of it. I just knew i was increasing in pain through out my body. My rheum gave me pain pills for hiking but still was using only ibuprofen for my main pain re-leaver but it was not even coming close to the pain i was in now. Being in that much pain wears you out so much. I tried hypnosis earlier and i could use that if i got ahead of the pain. I also was trying off and on acupuncture but not with a lot of luck. A friend of mine who husband is acupuncturist now says they have better understanding how to help it. SO i might try it again.
Through out all of this journey with lupus....i had my first black lab named Tara. she was very special dog! I wish she had come along about now so i realized how special and smart she was!! She walk on the top of fences on those 2/4 like cats do!! climb apple trees to eat the fruit and was best hunting dog according to men who have hunted all their lives! I could have easily shown her and won the obedience awards hands down....she would go 'on' when she felt she was being watched or had audience. What i loved best was how fast she could swim...these big macho guys with their strict looking dogs come up next to me along the river and toss a stick thinking their macho boy dog would win...ha she won every time! she had great sense of humor that she play on humans and huge heart...if i came across abandon dog on highway or country road. Someone took my bf yellow lab while we were out duck hunting ..we got him back..name on collar saves the day!! All our friends requested we let them mate. I am against backyard breeding..most do not know what they are doing etc...but we got 10 friends who wanted puppies so we did it. Now i love puppies and been taking care of them since little kid...so i loved having her pups...all went to friends..i kept one and guy who became my husband took one.!
So we had 3 blk labs and than i took on canine companions ..got yellow lab to train which was wonderful experience...they were just starting out back than in Santa Rosa, Calif one tiny trailer lol! so had 4 dogs for bit.
Than slowly they all died off but with love... We still had one dog left when i decided it was time to get me a dog of mine...now ours. I thought about flat coated retriever ...a friend who wrote dog coloumn at the Bee told me about them plus went to few dog shows with her. But realized my heart belongs to Engilsh labs so easy going and sweet.I finally found a breeder ...who does it where all dogs have homes before she breeds the bitch. If any pups come down with any genetic disease..you cannot breed it. Just very responsible...well she had pup for me that had been promised to home with rott and she felt with this dog's personality rott would just over power it...so she gave it to me. Since my first dog..you have dogs and i love them but not special..this one was. I know she came to save me and stayed alive for me...sadly she was abused while was gone and she was deathly ill. Something I cannot forgive myself completely yet...my husband got queensland heeler who now is my dog..he and the lab loved it each other totally! They made it other better and us too! i still have him, heeler..along with jack russell whom i call my lab puppy fix lol
She only 20solid lbs but rules the roast! well she did...my husband and I have been living apart he recently moved back in and brought with him a french mastiff. If you have ever seen Turner and Hooch with tom hanks that is the dog. He is 140lbs of slobber lol! He has been walking with my dogs since he was a puppy and always wanted to stay with me here so he go his wish in way. lol!
I also have two 10yr old cats that rode as kittens on the bottom of our truck after long dog walk in wilds of the bay area near Cordelia!! (north of SF) Someone dumped or they are feral cats ...they rode about hour...i went to pick up pills about half hour down from hike and than back to home. i heard this little mew....and was like what?
I guess they got scared of all dogs around and jumped up inside the bottom of his truck and held on!! Poor kitties moved to snow area but they seem very happy. I worry lots of things that would eat them..coyotes , mtn lions etc but they know when to come in and hide..plus they have their own set of protectors!
i also had two birds...but gave one...to keep a friend who is like family to me..better than my family to keep him company..cockatiel...great bird....and still have parakeet who is singer. I like animals you cannot tell. lol!
I love to get like Irish horse to take with me back into high country since my joints are much more painful...when hurts to much i can ride my pony!! Think husband is warming up to it since has wrecked ankles from his auto immune disease.
So Astrid...i went to school with woman named that...she came from Iceland...i think i told you that already oh well...Now you know about me pretty much....did not put everything just too much. I been married 27 years now!. He has always been really great about my disease and and even more since he found out he has Hemochromotosis. We have had our share of problems....really bad ones at times....but he loves me and i love him. Guess that is what matters most and if they treat you with respect. he and i could be 10 page thesis !!
like i said...to one person besides Astrid to ask me to be friends...that it is hard for me to reach out but appreciate greatly when people do. I am trying harder to reach out more. Lets just say i have been hurt really bad few times so now i move slow before i ask others to be my friend..
hope what i wrote makes sense since this is 2nd night have not being able to sleep so thought i tell Astrid about myself and you guys too. the wide variety of people who are in this forum. Really...all you seem to genuinely care about one another. I know i really do care. this disease we have or any autoimmune disease is so frustrating and tiring. It is like you think you got it down.....than BAM! a new set of rules pops out.....constantly fooling us like the grey wolf would in so many Indian stories.
But seriously....it means a lot to have people who listen and care...and even come up with solutions!! How excellent can that be?!!
if so long..just read in spurts.....my niece just reamed me about long emails so i apologize now. Thanks to Astrid & Rachel to help me open the door!
seriously i have not slept in few days ...so excuse any mistake or if dose not make sense...i got to lay down now. Nite