Oh, yeah. I never lock my car, but that is because for the most part, there is no one around here who would think of getting into my glove box for anything, let alone the house keys. They would mostly be looking for metal to steal around here. I just hope I can manage to get all fences, etc up around this property before someone thinks of ripping off all the pipe panels I had up for the horses at the other house. There are a lot of them, worth quite a bit of money, and I don't want them to walk off. But moving in such a huge hurry necessitates borrowing a huge amount of money to get everything moved, much of which I still owe, and have to pay back ASAP.
Your system probably works well for you. When I locked myself out, I had been fearing such a thing for a very long time, and when I blanked out for a few seconds, I guess I was primed to turn the lock in the door. I hadn't used that lock except when going away prior to that. It was very surreal when I came to and found I was locked out. Twilight Zone kind of thing.
I had thought about keeping some house keys around my neck on a chain, also, but probably wouldn't remember to bring it with me to get the dogs in. Good it works for you!
How did you manage to hold down a job at University when you had Lupus? I haven't been able to work full time since the early 90s, 93 I think it was; I was just too exhausted.
You holding down that full time job is inspiration for the rest of us. I would love to work, even part time, doing accounting, but would have to start my own business, not the easiest thing in the world to do. And, people where I live don't have much money, another problem to overcome.
I am assuming that you didn't have anyone to help you at all. I had my own daughter get tested for the ANA test, and she tested negative. I am always very interested in genetics, so was wondering if any of your children tested for it, and if so, did any come back positive. I also am wondering if that ANA marker isn't something that could change. I keep seeing (TV shows, mostly) and hearing, on radio shows, about DNA being able to either change on it's own, or be changed. Come to think on it, if you are one to believe in evolution, that would require DNA changing. I mean, if every strand of DNA contains the blue print for the entire body for whatever species it is from, then, deduction would tell you that it has to be changeable. Otherwise, we would all be dinosaurs. Well, I am practically a dinosaur anyway, but, you know what I mean. lol!
Ann A. said:
I inadvertently pushed the button in on a push lock which I could probably open with a credit card. The story of how I held down a full time academic job for 30 years is long and boring. I have probably written about it on LWL a hundred times. But it is fairly simple. Being too exhausted to earn a living was not an option for me. So, I had to figure out how to earn a living even though I was exhausted. I was determined. I was creative. I took advantage of developments in technology to make the physical load more possible. I bought my first PC in 1981 and my first modem in 1982. My first portable computer was a Toshba that must have weighed about 35 pounds.
What I gave up was a social life. I did not date. I did not party. I did not go to events on the weekend. I have never been to a state fair or to an amusement park or to any thing that required walking because my knees were gone when I was still in my 30s. I worked and i rested. I worked and I rested. My children needed food, they needed clothes, and they needed a relatively safe place to live. I provided that. When possible, I taught on Monday, Wednesdy, and Friday. I worked on course preparation and my research at home on Tuesday, Thursday, and Saturday. On Sunday, I got ready to do it all over again. It is a good thing that really liked my kids and loved my work.
Well, I don't want you to be depressed either, and I just recently had a terrible bout with it myself, so don't want a repeat performance, myself. Just lets keep up this conversation, going places like genetics, which I totally am fascinated with, BTW. And, we'll just keep truckin on.
Well, we are supposed to have some duzy of a storm come thru here tomorrow, and we do get snow. It is almost cold enough that we might get a sprinkling of it. You have a beautiful place there. How'd you put a picture in here?
Ann A. said:
Well, it is theoretically possible to make vitamin D from sunlight in Central Virginia starting in March. But that will not be happening today. Just yesterday I was looking at periwinkle blooming in my front yard and anticipating the forsythia. HA -School closed and no pool for me. Yes, the white stuff is snow.
Let me know if you work out a way to be successful and make some money online. I would love to get something going. I am so tired of being broke.
You know, my 1/2 sister got some DNA analysis that showed her as being on the very likely side of getting Lupus. As far as I know, no one in either side of my families ever had it. Except for me. She also showed high possibility of getting several other things I have observed in myself. I think one was Hashi's, and some sort of mental thing, can't remember now what it was called, but, yep, I have noticed.
BTW, I used hair chemicals for many years, was blond instead of medium brown. I have heard the theory before, that hair dye can cause Lupus. Hmmm.
Ann A. said:
I was on my own with my kids 2700 miles away from a parent. I am 18 and 19 years older than my only siblings who also lived in another state. Having a gene does not mean that it will be expressed. A gene can be switched on or off by nutrition, stress, and other factors in the environment. My children are now 46 and 39 years old. My daughter has Hashi's but no sign of lupus. Both of my parents, all of my grandparents, and each of my greatgrandparents were born in the same county. I am the only one on any of the lines, according to the family historians, with lupus. This suggests to me that my genetic code was influenced by triggers unique to me as opposed to being shared with my cousins: pollution from copper mining and a combination of hair chemicals. I am almost finished with my new degree. I am thinking about how I use it to increase my income. There are ways in which the internet can make location unimportant.
I can't see the icons on the left of the toolbar. I am using Firefox, and I know there is often a difference in the way things show up on various computers and browsers.
How rotten is that!!!?? The whole family getting the same thing. Hashi's must be much more hereditary than just plain Lupus. I know of so many people now with Lupus, tho, and of course my ears prick up when I hear the word on TV, where some star or other has it. You probably know Michael Jackson had it. I think that is probably why he acted so strange.
I had lesions in my nose and ears, but never questioned what it was till I got them all over my hands and arms. I had insurance then, so my Dr tested me for a couple three months before he came up with Lupus as a diagnosis. Then, at least, I had something to work with to try to get a little better. The brain fog I had back then was sick. It was all the time, nothing helped it. I got my first allergy test after that, and it came back with Nightshades, alcohol, sugar, and a couple other things I was allergic to. I began to stay away from them, and the brain fog slowly, so very slowly, began to lift. I could think again. Before that I had thought I would literally die any minute.
Ann A. said:
The first visible lupus symptom that I experienced was lesions in both of my ears shortly after hair chemicals were allowed to pool inside of them. I thought they were related in 1968 before there was much to read.
I was actually put on vitamin D BEFORE finding out I have an Autoimmune Disease. I have to take 50,000 IU per week. I can't be in the sun anyway because of having Melanoma, so I don't even really know how much the sun affects me! :)
I hope they caught your melanoma soon....i have had a fight with pre cancerous spot for going on 20 years..froze it finally use some kind strong acid that took deep layers off. Since been wearing hats and sunscreen since twenties sure this is from my childhood when i get brown as a black bear...i have olive complexion so i never burned.
I seen so many others have spots removed from scalp and face... and yet i still see people out laying in sun....just is insane.
thanks not only for keeping us up on D but another good science site!
Plus you really do not know for sure how much is in the pill unless it has the USDA seal on it... it is seal that US government puts on pills that request them to test and verify that what they state it is and amount is actually true.
I read interesting article years ago about how many of supplements do not often even have half dose they say or not even all things stated in like multiple vitamin.
I am so glad you pointed out about the ability to over dose.....i remember a doctor pointing out that people can over dose on water if they drink too much in day and can kill them...
Too often people think since it is natural or just a vitamin it is safe which is so far from the truth . So thanks again for reminding them to be cautious plus people should say it is prescription strength they are taking at such high levels and most likely their doctors are taking blood test to make sure they are not over doing it.
I saw a segment on the evening news about compounding pharmacies and they are not regulated?! I was so surprised by this, we have to be our own watchdogs.
Hey you guys, I just read the post aboat vitamin D, & I totally AGREE ! A few yrs ago there was sooooo much going on with me I decided to give my lupus dr some help....along with his referral, I got a hematologist. They work very well together & he appreciates me trying to lighten his load...anyway the new doc put me on vitamin D & iron...he also manages my blood thinners. It works out well, my lupus doc realizes he needs help sometimes & that contributes to him being a great dr & person as well.
Yes, it was caught in time. Just insitu (or however its spelled) which meant it had not invaded passed the surface. I did have to have tissue removed 3 different times because they kept missing part of it. But it has been 8 years and no return. I have had several precancerous spots removed since, but no more melanoma! I am very careful and avoid the sun and use lots of sunscreen. I am sure that doesn't help my vitamin D levels though :)
siskiyousis said:
There is another interesting article in same site on lupus you all might want to read.
I hope they caught your melanoma soon....i have had a fight with pre cancerous spot for going on 20 years..froze it finally use some kind strong acid that took deep layers off. Since been wearing hats and sunscreen since twenties sure this is from my childhood when i get brown as a black bear...i have olive complexion so i never burned.
I seen so many others have spots removed from scalp and face... and yet i still see people out laying in sun....just is insane.
thanks not only for keeping us up on D but another good science site!
One of the things that I was tested for by my Nephrologist early on before I was Diagnosed with SLE was Vitamin D! I live in Florida and loved the sun but my levels were 9 on the first test! 9 and that was with sun exspoure. In 2007 I was diagnosed with Tumid Lupus ( a rare form of skin lupus) 2008 I was diagnosed with my first melanoma on my lower leg (clarks level 4) and since then I have had two more places of melanoma removed from my back, both which where in situ (skin level). The last one removed last thrusday, I haven’t been in the sun For years! According to my Oncologist the damage is from when I was younger baking and burning! Oh the joys of baby oil!
Surprising enough my vitatmin D levels go up and down, so I am on a Maintenance dose of vitamin D! I take 50,0000 International units every 28 days. My sister who is starting to having Symptom of lupus is in the sun all the time! She lives on a river and their boat is right in the back yard. Her and her husband fish almost every day. So after much pushing from me she had her vitamin D level checked and she was 13! She is now on vitamin D too!
Also my sister has had three places of melanoma removed of her body and according to my Oncologist it was more likely to be because we both love the sun and baked and burned rather then the melanoma being Hereditary!
So if both my sister and I had low vitamin D levels with sun exposure what caused the low levels! I feel it was caused by the autoimmune issue! But of course there is no way to prove it!
I live like a Vampire now and hide from the sun all together!
Because of the skin lupus and the melanoma I was able to find that the state of florida helps to protect us. Not sure if this will help but in Florida we have a Medical Exemption Law for sunscreen protection for your vehicle. You can get illegal window tint on the windows of your vehicle to protect you from sun exspoure while driving in a car! It was a state application that had to be signed by my Rheumatologist and submitted. The state gave me a Medical Exemption Registration to carry with me so if I get stopped by the police they will not give me a ticket for illegal window tint! This law was great for me! I no longer had to drive with a towel over my legs!
yes, if you are baby boomer age...we all baked in the sun. I have olive complexion so very hard for me to burn even in higher altitudes...and i discovered i had SLE in my twenties so been wearing hats since then
I have not had true melanoma but have had over 6 times a spot that is pre cancerous frozen off on my cheek below eye about few inches....and dermo said same thing from childhood Finally had to use this really strong cream took deeper levels off and so far all has been good.
I was just surprised since i just never sunburned at all but we would go to Lake Tahoe and just spend entire day in sun baking....my mom has had few cases like me in her scalp...so remember to check there as well.
I love the sun as others....but i never lay out in sun and read like i use too...even if early in am. I do get out in it but always with sunscreens and wide brim hats....sun clothing too! I do feel that better brands of sunscreen than most otc brands and try to use them as with them, rash really does stay away....or i do not get that before feeling of sun hurting my skin. Isabella's catalogue carries excellent sunscreens won't break out your face but is long lasting. Dewing3569 said:
Thanks Ann A for posting this information.
One of the things that I was tested for by my Nephrologist early on before I was Diagnosed with SLE was Vitamin D! I live in Florida and loved the sun but my levels were 9 on the first test! 9 and that was with sun exspoure. In 2007 I was diagnosed with Tumid Lupus ( a rare form of skin lupus) 2008 I was diagnosed with my first melanoma on my lower leg (clarks level 4) and since then I have had two more places of melanoma removed from my back, both which where in situ (skin level). The last one removed last thrusday, I haven't been in the sun For years! According to my Oncologist the damage is from when I was younger baking and burning! Oh the joys of baby oil!
Surprising enough my vitatmin D levels go up and down, so I am on a Maintenance dose of vitamin D! I take 50,0000 International units every 28 days. My sister who is starting to having Symptom of lupus is in the sun all the time! She lives on a river and their boat is right in the back yard. Her and her husband fish almost every day. So after much pushing from me she had her vitamin D level checked and she was 13! She is now on vitamin D too!
Also my sister has had three places of melanoma removed of her body and according to my Oncologist it was more likely to be because we both love the sun and baked and burned rather then the melanoma being Hereditary!
So if both my sister and I had low vitamin D levels with sun exposure what caused the low levels! I feel it was caused by the autoimmune issue! But of course there is no way to prove it!
I live like a Vampire now and hide from the sun all together!
Because of the skin lupus and the melanoma I was able to find that the state of florida helps to protect us. Not sure if this will help but in Florida we have a Medical Exemption Law for sunscreen protection for your vehicle. You can get illegal window tint on the windows of your vehicle to protect you from sun exspoure while driving in a car! It was a state application that had to be signed by my Rheumatologist and submitted. The state gave me a Medical Exemption Registration to carry with me so if I get stopped by the police they will not give me a ticket for illegal window tint! This law was great for me! I no longer had to drive with a towel over my legs!
And for anyone with Back Pain? Vit D may be the culprit as well.... I just learned this along with a new exercise which really helps my lower back. Lay on your back, raise one leg and put your hands on your thigh, and then press your thigh onto your hands. Hold this for 6 seconds, do 6 repetitions once a day. Its given me some release from back pain after the first day.
Getting Vit D is very important, but use caution!!! I was put on Vit D 50,ooo units 1x a month and had been on them for over a yr by my previous rheumy. I started seeing a new Rheumy due to moving and I was having so unusual symptoms. He said that I could actually have Vit D overdose. So if you are taking large quantities of Vit D and are self medicating with them PLEASE make sure your Rheumy is aware of what and how much you are taking, so that you can be monitored with blood tests.. I have SLE and Raynauds..
I go back to the Rheumy on June 13th and will get results of ALL tests that were taken 3 1/2 wks ago. So will let you know what the results say then.
Ann A. said:
Dear Teejay,
Care is definitely warranted! Self medication with anything can be problematic. Because vitamin D is fat soluble ( like A, E, and K) testing is
recommended. After a deficiency is identified it is a good idea to follow up at least every three months. Once the deficiency has been rectified once every six months seems to work. 50,000 is the prescription dosage. I have no idea why physicians write those scripts for longer than three months without testing. 50,000 IU is a lot of vitamin D. I have seen people get in trouble taking those more often than prescribed.
I once got myself to an excessive level taking that dosage more often than prescribed. My doc wanted me at 70-80 ng/mL and I went all the way to 128 (oops-overshot the goal).
50,000 a month is not a very large dosage
50,000/30 = 1666 IU per day
A healthy person with fair skin who can be in sunlight when UVB is available can synthesize 10,000 IU from 15 minutes of sun exposure.
When your new physician tested your 25(OH)D levels were they excessive (>100 ng/mL) or toxic ( >150 ng/mL)?
Glad you are going to be careful self medicating in the future and thanks for reminding us that when you take fat soluble substances in excess they do not -as some have written - come out in the urine. They keep building up up up up.