Another question for u VERY INFORMATIVE friends of MINE....;)

General
1

Ok, So I am hurting, BADLY, and I usually don't say much, but it is pretty bad & happened like all of a sudden......look @ the top of ur hands, see ur veins, bluish under ur skin, well by my pinky & ring finger (in that area especially) those veins are VERY BLUE & PRONOUNCED, like popping out swollen, there is alot of puffiness in that area, and my hand is sooooo painful, my fingers, all of them are so painful to move, my palm of hand hurts & is weak to use.....???? Wierd, right??? NOW, today it is going to my other hand, my right.....WHY??? YES< that means it is ASymetrical, I know....Oh & my wrist on the left has been hurting & is swollen right on the joint too.....MY hand is almost non-functional for writing ( I am a leftie) and now it is going over to the right which has me nervous.... I cannot hold a pen to write.....

MY real question is, it seems like my veins are swollen & causing this?? Is this possible? HAs it happened to any of u before??? I have vascular issues, no bad varicose or anything, just small vessels. due to ANticariolpin....Antibiodies.....so is this from that??? From being sick w/ infection, cuz now stopping the antibiotics I smell & taste the infection AGAIN>.... but did not take it long enough AT ALL<,,, cuz now I am scared to! UGH....Damned if I do damned if I DON'T!! Lose/Lose Situation, I guess, i HATE THAT!!! Any similar experiences??? Oh & MY CHEST, the pleuritis is soooo bad, like when I breathe, feels like knives stabbing my back & chest....I've had that since I was 20 though, so used to that...:( I guess, being sick, has made me FLARE BAD, HUH??? Oh Well, Thanks in advance for any help w/ this one, sorry for rambling......but awfully frustrated!!!! Don't like when it happens so fast!!! makes me nervous, Oh & I had the "Stomach Bug" all last week, so that was miserable too!!! :( Think I need to trade myself in for a NEW MODEL....lol....

{{HUGS}} My Dear Friends!! Xo Suzie

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So sorry to hear that you are having such a tough time. What does your doctor say? I’ll be praying that you find some relief from the pain you are in. Know that you are not alone in this <3

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suzie, i wasn't going to write tonight bc i have had such a bad day---but i saw this and had to respond bc i had that problem with the veins in my feet and it was vasculitis---has to get steroids iv for about 24 hours. can you go to the doc? sounds like you need to get treatment for certain. will write more tomor

you are in my prayers

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Thank U Catharine & Janice, I was thinking vasulitis, cause of the way my veins r throbbing too, my Mom had vasculitis, I guess, it is hereditary? Personally I htink it is from the Antiphospholipid antibodies....she must've had them too, prob. was never tested yrs. ago......Oh Well, I am trying to rest, I will see what happens after today, and if needed I will try to see someone?! Thanks U Both again.....{{HUGS}} Feel better to you too....Suzie

janice said:

suzie, i wasn't going to write tonight bc i have had such a bad day---but i saw this and had to respond bc i had that problem with the veins in my feet and it was vasculitis---has to get iv for about 24 hours. can you go to the doc? sounds like you need to get treatment for certain. will write more tomor

you are in my prayers

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I listen to whats happening to you, a young girl, and wonder if I will ever go through such pain? I hope not I am a complete baby when it comes to pain, I cry and lay in bed and sleep from taking pain meds. I am afraid of what comes next, since I am 62. Hope you get help soon. Please keep ontouch. Bless You!

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Hi Suzie: I hope that you have recovered from the stomach bug last week. I guess adding insult to injury; you’re more than usual weakened immune state from last week only further inflamed your other symptoms. I’m so sorry you are having such a bad time and are in such pain. We are here anytime you need to vent, never feel shy about putting it out here :) I have not encountered any of the symptoms you are experiencing but want you to know that I am praying for you and hope that you find some relief very soon. Please keep us posted.

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Hi my precious friend, i am so sorry you are feeling so unwell, it is so horrible what Lupus does to us. What you have definately sounds like a lot of inflammation especially with what you have said about the hands the swelling and puffiness. Are you on any steroids at all, or any anti-inflammatory drugs at all, even ibuprofen can help a little. I get this occasionally when all my veins are popping up looking really pronounced, i dont know what causes it, maybe i should ask when i go and see the doctor again. I have Vasculitis, so i do get alot of problems with circulation and my veins too. I get really bad pains in my calf sometimes, and all down my legs through a lack of circulation, i elevate my legs to try and help the situation, and put a pillow between my knees as well, as it takes the weight of my back abit, as sometimes the weight just of the legs can feel as though its pulling on the back, so its good to put the pillow between the legs and ankles and take abit of pressure off everything. I have numbness in my hands and feet alot of the time which i find abit scary at times, especially when the tips of my fingers turn white through having Raynauds and the Vasculitis. Some people say there are days where i look really drawn, really dark under my eyes and really pale at times. Antibiotics certainly dont help the situation for sure. I always feel really sick, or am sick when i have to take antibiotics. Its horrible when we get that breathing thing, it feels as though we are wheezing, and sounds like it too, i had abit of that earlier today, it was awful. I am sure having two different types of antibiotic arent helping the situation, and especially the cephalexin one. I have felt really really tired too, and just wanted to keep sleeping all the time. Dont every apologise for rambling, we need to get these things off our chests dont we and have a good vent about it when you need to. It will make you nervous when all these things happen, it scares me too. I am sorry you had the stomach bug to contend with as well, thats not nice for you. I always joke when Dave asks if he can get me anything, i say a new body might help, and we both laugh and he says he would if he could. By the rate things are going this may be possible in years to come, it doesnt bear thinking about does it, its just not right really. Okay the odd organ i can understand, but body transplants, no way. I was joking with another friend who is very ill, and we were saying what if it went wrong, as he said he would like some new legs, and he was saying some terrible but funny things, we have to have a wicked sense of humour sometimes to get through all this, in wicked i mean good, not terrible, hehe. I really hope you start to feel abit better soon, try and have some rest, i know its not easy when you have children to take care of, but at the in between moments, put your feet up whenever you can eh? I am in agony at the moment all over, but i will say that my legs are the things that hurt me the most, and round my ribs too, i dont think they have healed properly yet from the fall i had about a month or so ago. Anyway i wish you well, and i am thinking of you, i understand how frustrated you must be feeling, hope things get abit better for you soon. Take care, look after yourself, love and huge hugs, Astrid40xoxox

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Hi Astrid, Thanks so much for ur cncern, it means sooo much!! ;) Well, it is odd, cuz I as going to put an update & saw ur reply, I was JUST going to put that my left CALF is swollen, the veins r all bluish/purple & painful.....just like u said urs gets! So, I assume it is vasculitis.....:( Anyways, my Raynaude is BACK 2day bad too, it had subsided due to my blodd pressure meds, I think? BUT, today it was back & my hands/feet were in so much pain from the COLD & my hands turned blue, there was an actual line where the blue ended, right below my big knuckles on both hands....Odd, but guess it is all from vascular issues???!! Think I really need to rest! I have to put my legs up more & listen to my body telling me to take it easy....Sounds like that is what it is saying these days :(.....Well, don't worry bout me, I will be OK,,, u need to take care of urself & get urself up & at em' again!!! Thinking of u too my dear friend!!! P.S. I always say I would like to trade myself in for a new "model" of me too....lol....Suzie Xo

astrid40 said:

Hi my precious friend, i am so sorry you are feeling so unwell, it is so horrible what Lupus does to us. What you have definately sounds like a lot of inflammation especially with what you have said about the hands the swelling and puffiness. Are you on any steroids at all, or any anti-inflammatory drugs at all, even ibuprofen can help a little. I get this occasionally when all my veins are popping up looking really pronounced, i dont know what causes it, maybe i should ask when i go and see the doctor again. I have Vasculitis, so i do get alot of problems with circulation and my veins too. I get really bad pains in my calf sometimes, and all down my legs through a lack of circulation, i elevate my legs to try and help the situation, and put a pillow between my knees as well, as it takes the weight of my back abit, as sometimes the weight just of the legs can feel as though its pulling on the back, so its good to put the pillow between the legs and ankles and take abit of pressure off everything. I have numbness in my hands and feet alot of the time which i find abit scary at times, especially when the tips of my fingers turn white through having Raynauds and the Vasculitis. Some people say there are days where i look really drawn, really dark under my eyes and really pale at times. Antibiotics certainly dont help the situation for sure. I always feel really sick, or am sick when i have to take antibiotics. Its horrible when we get that breathing thing, it feels as though we are wheezing, and sounds like it too, i had abit of that earlier today, it was awful. I am sure having two different types of antibiotic arent helping the situation, and especially the cephalexin one. I have felt really really tired too, and just wanted to keep sleeping all the time. Dont every apologise for rambling, we need to get these things off our chests dont we and have a good vent about it when you need to. It will make you nervous when all these things happen, it scares me too. I am sorry you had the stomach bug to contend with as well, thats not nice for you. I always joke when Dave asks if he can get me anything, i say a new body might help, and we both laugh and he says he would if he could. By the rate things are going this may be possible in years to come, it doesnt bear thinking about does it, its just not right really. Okay the odd organ i can understand, but body transplants, no way. I was joking with another friend who is very ill, and we were saying what if it went wrong, as he said he would like some new legs, and he was saying some terrible but funny things, we have to have a wicked sense of humour sometimes to get through all this, in wicked i mean good, not terrible, hehe. I really hope you start to feel abit better soon, try and have some rest, i know its not easy when you have children to take care of, but at the in between moments, put your feet up whenever you can eh? I am in agony at the moment all over, but i will say that my legs are the things that hurt me the most, and round my ribs too, i dont think they have healed properly yet from the fall i had about a month or so ago. Anyway i wish you well, and i am thinking of you, i understand how frustrated you must be feeling, hope things get abit better for you soon. Take care, look after yourself, love and huge hugs, Astrid40xoxox

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hi Suzie!!!

Yes, vasculitis/arteritis (inflammation of arteries) can do that, so can your Raynaud's. The bluish color could be that or could be swollen arteries and veins that are not letting your hands get enough blood and oxygen. Seems you had it figured out from the start. I first posted that hands and lungs are connected to one vertebrae, T1, but now that you posted that it's also in your legs, it's not a chiropractic issue.

I'm so sorry for your worsened pain. There are times the pain is too overwhelming. I hope your Dr. is compassionate about pain control. So frustrating that we have a dozen symptoms to deal with at once. I'm dealing with the pleurisy too along with a dozen other symptoms. Had a bad fall on Sunday, dealing with a slight concussion and back injury but hopefully that will heal.

Blessings, Sheila

Blessings, Sheila

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Suzie, I have never experienced this type of thing, but I hope it get better for and in a hurry. Many blessings and hugs xoxoxox

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Hi Suzie , sorry to hear that you are not doing well !!! I really never heard of anything such as this , man this must be really bad .... The closest thing to this that has happened to me was not being able to hold anything in my hands for a period of time & open anything ( but that comes and goes ) . Well hope that this pass soon - how are the boy's doing ???? .... BEVERLY l.

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Susie, I read your post this morning and have been thinking about you all day. I can’t imagine what you are going through! I had not heard of vasculitis but it sure sounds nasty. Hope you find relief soon. Sending prayers, positive thoughts and hugs your way.

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I agree with Suzie D BUT can you get and see your doctor or any doctor ...i also suggest taking photos of how they look...put something like your other hand to compare it with...maybe like dime too. If you can do video that might even be better. Photos are next best thing to showing them in person....so at least they can see what it looks like.

You might want to take photos of your feet, legs....see if any veins on them are popping out too....or just check all your body.

When it is new stuff like this...best is to get in to a doctor...even urgent care kind....not emergency unless you feel it is emergency. Take photos/video and write notes how you feel exactly...does it hurt when you open and close your hands..wrist hurt? Hot or cold feel good or make it worse...stuff like that..

I have so many weird swellings of different parts of my bodies.....sometimes they found out what it was other times it cleared up on it's own after like few days to few months. GOOD LUck..sorry it hurts so bad. You might try some Voltraten Gel...it is RX so you need to get it from doc but works great with swollen joints etc.

And it just could be ...your body just tired and things pop out in different place. i hope you feel better soon. ooh would not it be so nice if we could trade our bodies in for new ones?! would you keep same hair....body shape etc? lol having fun you take care and good luck loree

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Hi siskiyousis, Yes its a very good idea to take photos, especially if you cant get to the doctors immediately, most doctors are very interested to know what has been happening. I took a few photos when i was covered in this horrible red rash, it was everywhere, behind my ears, literally everywhere. They took a look and it turned out i had an allergy to this certain drug, i had stopped taking whatever it was i was taking, and the rash had got better, but they found it conincided with something i was taking at the time, some doctors like to keep the photos on record too, especially the Rheumatologists, i know my Rheumy likes to keep a record of everything that happens to me, as i am a very complex patient was how he put it. He has photos that he has taken himself of ulcers and things that have been so much worse than the usual ones, and one doctor took photos of the chicken pox i got later on in life, where they were in my throat and said he was going to use it as slides to show new doctors for their lectures. I did have chicken pox really late in life, when i was about 28 and it was a really bad case of it, i had them in my throat, nose and other areas, which was horrible, i couldnt eat for a week, only things like ice cream, as my throat was so sore, as you can imagine. I got chicken pox and measles again through low immunity later on, has anyone else had those things because of their immunity being low. Good idea siskiyousis to take photos of things, take care, bye for now, love and hugs Astrid40xoxo

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Hi patter, yes i was also thinking of Suzie too, there are alot of us going through a really tough time at the moment. Lupus changes like the wind sometimes, where we might not feel too bad one day for how we are, and then the next we feel really awful. I have vasculitis as well, its not pleasant. I have got Necrosis where i have knocked myself by falling over, now i have to be really careful not to knock myself, but as i am abit wobbly at times, thats really hard. My right and left leg has been really playing up today especially in the calf area, which is where the vasculitis tends to play up the most, its really painful at the moment. I have a part of my leg where i cant feel with it where it is totally gone dead, so i can really empathise with Suzie at the moment. I wish i could wave a magic wand and get rid of everything everyone is suffering from. Anyway you take care, bye for now, love and hugs Astrid40xoxo

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Astrid,

do you work or do anything out side of the home? Seems like you are on most days and large part of it. I do not work and days i do not feel well....try and participate in this forum. I like this one because people are well supportive and kind.

Maybe i am getting a bit too personal if so just ignore me. I am exhausted so not thinking well.

BUt i really hope you are feeling better.

astrid40 said:

Hi patter, yes i was also thinking of Suzie too, there are alot of us going through a really tough time at the moment. Lupus changes like the wind sometimes, where we might not feel too bad one day for how we are, and then the next we feel really awful. I have vasculitis as well, its not pleasant. I have got Necrosis where i have knocked myself by falling over, now i have to be really careful not to knock myself, but as i am abit wobbly at times, thats really hard. My right and left leg has been really playing up today especially in the calf area, which is where the vasculitis tends to play up the most, its really painful at the moment. I have a part of my leg where i cant feel with it where it is totally gone dead, so i can really empathise with Suzie at the moment. I wish i could wave a magic wand and get rid of everything everyone is suffering from. Anyway you take care, bye for now, love and hugs Astrid40xoxo

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Hi there siskiyousis, i dont work any more, as i never know how i am going to be feeling, and the last job i was in, they werent keen on the amount of time i had to have off, so that was that. I was advised i would be better off going off sick, the only problem with that its alot less money of course. I would love to be able to work again. I used to be a nurse, but that one isnt going to happen as thats too much running around and things, but then i also trained to work as a teacher, i taught dance, and music, and english to young ones. I could see me going back to the music teaching if i was well enough. At the moment i have MRSA on my lungs along with pneumonia, also MRSA in my ears and some on my scalp and also in my urinary system, which was abit of a shock, i was waiting for tests for the urine one to come through, and now it has, it was a shock it was there too, i am on two different types of antibiotics for three weeks, i have to go back for a check up next week at the doctors. I dont seem to have a day where i am feeling okayish at the moment, it has been like this for years. I am on 24 different meds for the Lupus and Lupus related conditions. I have the organ involvement, Sjorgrens Sydrome, Antiphospholipid Syndrome, Vasculitis, R/A, Eye problems, joint and muscles problems, Necrosis in the legs, Ischaemia Heart Disease, Fibromyalgia, Epilepsy and a few others i probably havent mentioned. I cant believe how it has all come to this, sometimes. When i see it all written down, its hard to believe it is me, but i know it is really as i am in alot of pain. I am having so much trouble with walking this week, its worse than ever for some reason, it might be that i am run down at the moment, thats most probably the reason. Yes i do take part a fair bit on here, i tend to come on either early morning, or later in the day, as i have to sleep in the afternoons, so that i can have my evenings for me, or otherwise i fall asleep about 7ish, and then miss the television programs i might want to watch, or i cant come on here if i want to. I do wake up every couple of hours when i sleep normally, but i am sleepy when it happens. I have nights where i cant sleep at all through pain etc. I have just been allocated a hospital bed as i am so bad at the moment, its not nice to be this bad. Sometimes it does really get me down, like it would most people. I have to inject Methotrexate every week, i was having infusions, but this they said would be easier than me keep going up the hospital and catching other germs due to my immunity being so weak. It is a mild form of chemo, so it does make me feel sick and i am sick for the first four days after taking it, so i now do it on a Sunday, so that if the first four days are bad, then i have most of the weekend to myself until the Sunday evening. As there are more likely to be places where i am invited over the weekend, if i feel well enough to go. Often i just go in the wheelchair if i am not up to walking, and know there might not be enough seating area, its safer to know i have somewhere to sit down, as alot of people dont realise how ill we are if we arent not looking too ill, they assume the rash is due to being healthy, and it doesnt matter how many times you tell someone what the rash is, and that it happens more when having a flare, it just falls on deaf ears i find, i think they would rather not think about it, so they switch off abit. Its good that you are coming on here as much as possible, its a great support being on here with the LWL friends. I dont know if i have you on my friends list, i would like to add you if possible. You are helping others when you come on, so keep it up, its really nice to speak to you when you come on. I remember i cut my hours to part time in the same job in the beginning when the Lupus was getting really bad, then i could work no longer. I went through two strokes, due to the Antiphospholipid thing, i had a heart attack. I also had a couple of cancers, and it just knocked me right down. I am lucky in that i have a good husband and a lovely little Yorkshire Terrier dog called Harald, who keeps me going. My husband chose the Harald, i said Harry and he said Harald, after King Harald of Yorkshire, in the Uk, so i suppose it suits him really, hehe. He is such a wonderful dog, keeping me company and he knows when i am really not well enough to do much, but whatever i am feeling, i always make sure i take him out into the garden at set times of the day, and my husband does all the walking for me, if i am not up to it. Anyway i wont keep you any longer, its so good to talk to you, keep coming on and talking to everyone, you are such a nice person, I know it cant be easy for you feeling so unwell too. Do you have any animals, and are you with someone or alone? Bye for now, take care, love and hugs Astrid40xoxo

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Susie, just thought i would check in and see if you have had any improvement. You and Astrid have been on my mind a lot over the past couple of days. Hope you are feeling better. Hugs and prayers.

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Hi Patter, I am feeling a bit better thanks so much for thinking of me! I so appreciate everyone's support & care......I think after stopping the medication, my body is now free of it for the most part & I don't feel AS bad as I did...Trying to take it easy....But I do Thank God for the improvement, that was painfu!! Thanks Again! {{HUGS}} Suzie :0)

Patter said:

Susie, just thought i would check in and see if you have had any improvement. You and Astrid have been on my mind a lot over the past couple of days. Hope you are feeling better. Hugs and prayers.
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dear Astrid,

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