View Full Version : New member, not new to Lupus

01-15-2008, 11:44 AM
Hi! My name is Susan. I've been formally diagnosed with Lupus for 4 years, but have suffered from it for years (along with Crohn's Disease - double whammy). I never tried a support group or forum like this, but I really should have. I have read many of the postings in many of the topics, and I would love to have come here sooner (you guys are awesome support to each other). I struggle with many of the things you discuss (rashes, profound fatigue, pain), but I have also developed osteoporosis from the prednisone and methotrexate, and as a result have had 8 fractures in the hip and pelvic areas in the last 3 years. I wonder if any of you have heard of this happening? It is difficult to get out at all, and I was already new to the area when I got so sick. So, I have few friends, and I have been unable to work for 4 years. Depression was inevitable. I should have come to you sooner to give myself the support I desperately needed (need!). Gosh! I'm glad you are here!

01-15-2008, 02:10 PM
Welcome Suzique,

I am sorry you have been through so much. Are you currently taking anything for the osteoporosis? Fosomax is RX that can be written by your doctor and helps. It sounds like you fit in perfectly with our family. I have not heard about hips and pelvic fractures; but everyone is different.

You really need support and that is what we are all here for. We try to help or make suggestions while being supportive. It also helps when you are living through Lupus and many of the accompanying health issues, and do not know what to expect day to day.

I know someone else on the forum will jump in and answer your question about fractures; probably Saysusie. Welcome again, and I hope you are not feeling so alone anymore.

Take care,

Faith 8)

01-15-2008, 03:55 PM
Faith, regarding the question of whether or not I am on Fosamax for the osteoporosis: actually I was for two years (Actonel), but I continued to fracture and the funny thing was, my Dexa was pretty normal. Finally, a special specialist (haha) told me that I have "Bone Demineralization Osteoporosis", which causes the bones to be fragile and no longer hard, rather than thin them. It is weird. I took an IV treatment of Zoledronic Acid for it, but that takes months to become absorbed and re-harden the bones (if it works). I have just never talked with any other people with this kind of problem, and I wondered if anyone there had. No big deal, we all have our bizarre little quirks that we bring to the forum, it looks like - haha - but wondered.

sick n tired
01-15-2008, 10:58 PM
Hi Suzique,

Sorry to hear all that you have. I am new to lupus but not really new to the symptoms as they have been going on for a long time. At the moment, I am in a flare, and I am having a hard time getting out of bed.

I have never broken my hip but I did brake my foot this last summer. It was because of that break that ultimately led to my diagnosis. In a round about way. Weird, huh. I seem to have gotten so clumsy and stepped of of a stem and my foot broke. The doc wants me to go for a bone scan.

Well, welcome to the forum.

I Him


01-16-2008, 10:18 AM
I have no personal experience with osteoporosis. But, I just wanted to provide some information about the use of glucocorticoids (Methotrexate) and its link to Osteoporosis:
High doses or prolonged use of Methotrexate can cause Osteoporosis. If you are taking 10 or more milligrams per day of prednisone, Methotrexate or another steroid for more than three months, your doctor should have prescribed 1,500 mg of calcium, 400 i.u. of vitamin D to take daily to prevent osteoporosis.
Since you have osteoporosis with your Lupus and are continuing to take Prednisone and/or Methotrexate, then your doctor should prescribe osteoporosis drugs to try to prevent further progession.
Osteonecrosis (bone thinning and fragility) is an unfortunate complication of SLE or glucocorticoid (Methotrexate) use. Osteonecrosis most often affects young adults aged 3050 years and, if the hip is involved, total joint replacement is commonly required. Osteoporosis is defined as a reduction in bone strength by becoming fragile or thin. This reduction leads to bone fractures, even when very low forces are applied.
Individuals achieve peak bone mass about the age of 20 years. After peak bone mass is achieved, bones are constantly remodeled through a tightly coupled process of bone resorption followed by formation. This type of coupled remodeling of the skeleton continues until women become menopausal, at which time reduced levels of estrogen and increased levels of follicle-stimulating hormone stimulate accelerated bone remodeling, and gradual bone loss occurs. In men, age-related bone loss occurs in the eighth decade of life. By the age of 75 years, women have lost nearly 30% of their bone mass and nearly one in two women will have osteoporosis and consequently a high risk of fracture.
Bone remodeling is a tightly orchestrated process in which osteoclasts (cells that resorb bone) attach to the bone surface and remove bone. After a resorption pit is formed, osteoblasts (bone-forming cells) migrate into it and produce new bone, referred to as osteoid, which then mineralizes. Under normal circumstances, the exact amount of bone that is removed is replaced. Physiologic states that are associated with high levels of osteoclast activity or low levels of osteoblast activity can, however, uncouple this process and bone loss can occur.
SLE patients have lower bone mass in the lumbar spine than persons of similar age who do not have Lupus. Patients with SLE also have a significantly higher risk of vertebral fractures. The majority of these fractures occur in premenopausal women with Lupus. Some of the traditional risk factors for osteopenia and fractures in the majority population are present in SLE patients.
Risk factors for osteoporosis in SLE patients include the use of glucocorticoids, and it has been found that long term use of glucocorticoids was a strong predictor of fractures. In addition, cyclophosphamide have been found to reduce bone mass, by altering estrogen and the follicle-stimulating hormone levels.

In Summary, according to The Lupus Foundation of America:
Systemic and localized inflammation caused by Lupus results in elevated levels of cytokines and proteins that alter bone remodeling and increase bone loss. Tumor necrosis factor, interleukin 6, oxidized low-density lipoprotein (a substrate for lipoprotein lipase and RANKL all either increase osteoclast-driven bone resorption or reduce osteoblast-driven bone formation. In addition, the traditional osteoporosis risk factors are also relevant in patients with SLE (e.g. age, weight, history of smoking, peak bone mass, history of fracture as an adult, and family history of fracture). There are metabolic conditions associated with SLE that can also increase the risk of osteoporosis: low serum vitamin D levels, low thyroid activity and, possibly, a high homocysteine level. Lastly, to reduce their disease activity, patients with SLE are treated with medications that can have adverse effects on bone strength (i.e. glucocorticoids, cyclophosphamide and GnRH agonists). Abbreviations: CRP, C-reactive protein; GnRH, gonadotropin-releasing hormone; IL, interleukin; RANKL, receptor activator of nuclear factor B ligand; SLE, systemic lupus erythematosus; TNF, tumor necrosis factor.

I hope this information has been helpful.
Peace and Blessings

01-16-2008, 11:58 AM
SaySusie, yes, I have been on Calcium, Vitamin D, Magnesium, Folic Acid, and Actonel, almost from the first day of diagnosis. Funny thing, Karen, my first fracture was my foot, too. I was actually still quite active, although having fatigue, joint pains, fevers, rashes, and mouth sores. My ANA was positive for Lupus, and my C-Reactive Protein was very high. Despite all of this, it took 3 years of severe symptoms and three Rheumys to finally get the proper diagnosis! By then, I suppose a lot of damage had been done. I have yet to understand why they find such difficulty seeing what is so plain! According to what I have learned, there are 7 major symptom groups that distinctly describe Lupus, and it only takes having 4 of them to qualify as a diagnosis. I had 6 for years! I tell this to offer reassurance to those still struggling with symptoms but no diagnosis. As said by so many others, I was not GLAD to have Lupus, but I was relieved to finally have acknowledgement that my symptoms were true and for a reason - not in my head.
Another odd symptom that I have frequently with flares, that I have not seen mentioned, is sores on the hands - mostly finger tips - supposedly from the compromised circulation. They are very deep and very painful, sometimes downright intolerable, and they take a long time to heal. I have been to dermatologists and have tried every lotion on the market (by prescription, even) to cope with them. The most soothing thing I have found is these mineral oil gel finger covers that hug my fingers like little gloves. It feels good, but does interfere with typing!
My heart goes out to all of you going through a bad time, as I have felt that way myself. At least you have found (and now, so have I!) a place to verbalize your frustration and pain to sympathetic ears (eyes?).
God Bless you all!


sick n tired
01-16-2008, 11:08 PM
Hi again, Susan,

It sounds like you have Reynauds syndrome, too. My fingers turn white then deep red when they are cold as well as my toes. Do you get sores on your toes, I do.? You really need to wear mittens, of course you already know that, I am sure. :)

You have had so many hip fractures, did you fall? I have had quite a few falls and in publc (embarrassing) since summer. :oops: but no more breaks.

Have a great day,


01-17-2008, 10:52 AM
Yes, the breaks occurred with falls. Nothing major, mind you. Just legs gave out on me, and I crumpled to the ground. Once right on the sidewalk by the hospital where I was working. Leg bleeding wildly, and not one person stopped to offer help. Terrible how cold people can be. I use an assistive device, at least a cane, now, but still manage to fall, usually in my house where I think I'm invinceable - LOL. Did you ever have the bone scan? Some of the positions they put me in were quite uncomfortable - you might want to take whatever pain med you have prior to going, just in case they do the same kind of maneuvers with you.
Yes, I get the sores on my toes, too. I wear thick socks and slippers all year round and avoid temperature extremes. No playing in the snow :(
Yes, it is due to Raynaud's. I take two meds for that. I seriously have a pharmacy now! LOL.

sick n tired
01-17-2008, 11:05 PM
Hey Susan,

I havnot had the bone scan, yet, but thanks for the advise. I have been battling dizziness on again and off again for a month. It seems that when I have an appt for anything that I am not able to drive. My husband can't miss work for it, either.
I had a similar exerience as you when I broke my foot. I did it in a mall. I was beyond exhausted and was still pushing myself. (This was before diagnosis and I was sure that the tired problems were all in my head and I was just lazy.) So I kept going. I stepped off the bottom step and it must have been hard, because I ended up falling to the ground because of the pain in my foot. There was noone to help. At least I was not bleeding. So I tried to "walk it off" and nearly fainted so that is when I realized that it was broken. I walked all the way through the mall, praying all of the way, to my car. then drove myself to the emergency.

Oh well..I survived...

Btw. I read that you moved from Texas. Where did you live in Texas? If I could move out of state, then it would be to Colorado. It is so pretty there. Of course I am just dreaming. I don't know if I could handle the cold any better than the hot, anyway. It has just gotten cold here, (at least what we call cold) and I am not handling it very well.

Well, have a nice day,


01-18-2008, 10:59 AM
Lived in Arlington, between Dallas and Fort Worth for 14 years. Loved many things about it (friendly people, slower pace), but the heat from April to November was unbearable. Much better here (Seattle area), because it is actually quite temperate. Extremely cold days are really not many, and the hottest days are in the 80's, pretty much. On those freezing level days, I either don't go out at all, or I bundle up with lots of layers. Works for me.
Have you seen an ENT about the dizziness? I have chronic sinusitis (another inflammatory thing that Lupus can cause or worsen), and that causes pressure and dizziness a lot. It never bothered me excessively, until the Lupus got out of control, but now I have huge, dark circles under my eyes. Ugh! This adds to the general tiredness, too. They have lots of "natural" recommendations to help with those symptoms, if that is what is happening with you.
Also, have you considered having your husband obtain a Emergency Medical Leave form from work and having your doctor sign? We have one, and it basically states that I have a chronic, ongoing disease that occasionally debilitates me to the point of requiring assistance with getting me to the doctor, helping me with ADL's (activities of daily living) such as meals and getting cleaned up, etc., and ensuring my safety (due to the falls). They have to estimate the amount of time each year that might be necessary, which is really impossible with Lupus, but my doc just uses a range like this: 6-8 episodes per year, lasting 1-3 days each. We fill out the majority of the form, and he signs it each year. That way, when my husband has to take off to take me to the doctor, hospital, or just take care of me 1 or 2 days, if he specifies on his time form it is time to assist his wife, the company cannot count that time off against him for evaluating his performance. He has to use his personal time off to get paid, of course, but they cannot say he takes off too much - law protects him from that. It has worked well for us. He hates to take off, always feels he is letting his co-workers down, but he knows I wouldn't ask, if I didn't really need him. Something to think about, anyway.
So very nice to "talk" with you. Hope things get better for you.


sick n tired
01-18-2008, 11:21 PM
Hi Susan,

Arlington,huh.I guess if you still lived here then we would be pretty close. I live just north of the HEB area in Colleyville which is next door to Grapevine. The mall that I broke my foot in was North East. I lived in Irving for 18 years and then we moved out here. It sounds like you have been out of here for a while. Slower pace? Either that or it is really rushed there.

I, also, have dark rings around my eyes. I was wondering if this was sinusitis but was unaware that the lupus could make it chronic. that would explain it as I have been off the plaquenil for 4 days and the ringing has not let up. I will get in touch with an ENT next week.

I will tell Tony about the emergency medical leave. Is it the same in all states, I wonder? I guess that we will have to find out.

I quite agree that it has been nice to "talk" with you. So are you a native Texan? I am. My sister an mom have moved back to my birthplace of Chorpus Christi. My sister lives right on the beach. I wish that I coul enjoy that..Oh well..

Have a great Saturday,


01-19-2008, 09:54 AM
I have a friend who lives almost next door to you! She works in Fort Worth, but goes north for home every night. She came to visit me up here once in the 5 years I've been here, and I have been back there a couple of times.
No, I'm not a native, although, as I mentioned before, Texas is the place I have lived for the longest. My "home" is Mississippi (where my parents and most of my family are), but I have lived all over, due to the military.
Know that mall well, from going shopping with Rose (my friend from North Fort Worth).
Your husband is Tony? So is mine - hahaha. Yes, I think the Family Medical Leave is the same in all states, because it is a federal thing. Work places aren't anxious to tell you about it, because they know a properly executed form ties their hands regarding time off to help you. Some places put a lot of pressure on (about keeping your job) regarding time off - this may be true in his case. Well, this would secure his position, because they could be prosecuted for firing him when taking time off to help you, while that is in place. Hope you are able to work it out.
I don't know if the Lupus "caused" the sinusitis to be chronic, but we are far more susceptable to any sort of inflammation due to our disease.
It is so cool to talk with someone going through a lot of the same things that I am. I have suffered (diagnosed, formally) for 4 years, and I have yet to meet any other Lupus sufferers, except quick exposures in the Rheumy's office.
Your icon is a puppy and cat - do you have any? I have one of each. Love 'em both! They are so sensitive to my illness. They cuddle me extra when I am suffering. :)


sick n tired
01-19-2008, 04:51 PM
Hi Susan,

I am so sorry to hear that you are in pain today. I am too. I woke up exhausted. I guess thats what happens when you go off the plaquenil. :(

Yes I have one cat and two outside dogs. My cat's name is gato which means cat in spanish. Actually, his name started out to be Don Gato after a song that my youngest Joshua would sing in choir. I actually remember singing that song when I was in school. But anyway his name has been shortened to Gato. Some of the other kids call him ragmop which was the other idea for a name. teehee.

I do know someone with Lupus, but we havesort of lost contact. We grew up together. She was not diagnosed until she was around 25, but I do remember that she had a problem with nosebleeds as a child. When I was going through the tests I did get in touch with her. She is a nurse and has walked the same road. A few days before Christmas I was real down she called and it was such a comfort. but we do walk in different circles now. Most of the times I would feel so alone if it were not for this forum. In a way it is a lifeline and the people are so helpful.

I wonder if we do the emergency medical leave if Tony's employer might find something else to fire him over? That is the only hang up. Your husband doesn't worry about that?

There are times when I feel guilty for my husband having to do so much. He is great, but there are sometimes that I think he is wishing to have me back.
Sorry, but I am down today. Saturday and I am having a hard time getting up and doing anything.

Well I do hope that your pain subsides enough for you to have a nice day


01-20-2008, 02:38 PM
Yes, sometimes I worry Tony will get fired over some other issue, that is not of any consequence, just used to get rid of him because of time off, but we try really hard not to use it, unless I can't get by any other way, and it works out to be only about 5, maybe 6 times a year. Since he uses up his vacation time to do this, he is not really taking any more time than the others, and he is always available to work over time, when I am able to be without him a little extra (and the extra money is nice, too). I guess you just gotta have faith that the Lord will provide another answer, if the job chooses to let him go. So far, this has not been tested for us.
Are you feeling any better today? I wanted to stay warm and comfortable in bed this morning, but I have felt so down lately, that I pushed myself to get up and go to church. Just getting dressed, doing something with my hair and putting on makeup exhausted me! But my sweet husband takes me around in my wheelchair, which makes it a bit easier for me to get out and about. And, our service emphasized the importance of "letting our light shine", so I know I needed to be there today :) I hope you are feeling the warm thoughts and prayers coming to you through this forum - I see some from you, too!
Hope this is a better day and week for you.


sick n tired
01-25-2008, 12:33 AM
Hey Susan,

How are you, today.

Say, what are the natural remedies that you do for your sinus' I take so much medicine that I really need to do something for these sinus' as natural as possible.

My husband said that he is going to look into the emergency medical leave. He said that he had heard of it and has used it in the past. I didn't know. I think that at his work there is so many days per year that is allowed. I am not sure.

I haven't been to church in a few weeks. I agree that it is best to go. We are at a new church and I am not in the mood to get to know anyone. I look awful and I miss my old church. Tony says that I need to meet some of the women. I know some of them and they know about the lupus and I don't even get a call from one of them. I wish that I had some friends out here where I live. My mom moved to Corpus Christi and none of my relatives live near anymore. There are some times that I feel soooooooooooo alone. Now is one of them. I do try to keep upbeat but not right now. Maybe tomorrow.

Well I need to go to sleep now. I am probably going to have to get up early tomorrow. the kids will want to know if they get to stay home or not. You know about the weather here. The newscasters say that a great winter storm is coming and it never does. But the kids are still hopeful.:-)

"See" you tomorrow,


01-25-2008, 10:25 AM
There are a variety of methods for "flushing" the sinuses. I get lazy and don't do it often, but it really does help when you do. One easy one is called "Sea Spray", I think. It is sorta like nose drops, but you lay on the bed and squirt it up in your sinuses and let it loosen the thick stuff, so you can blow it out. This may be graphic for some of the people reading this, but it is really a relief to chronic sinus sufferers. The problem with having a chronic inflammatory disease with sinus problems is that the mucous membranes are always inflammed (swollen), and the thick secretions can't properly flush out. Then they sit in your sinuses and make matters worse (pressure, infection). That is why flushing is so important. My ENT gave me a device to put on a water pik for a more forceful spray, but I have yet to brave it. haha
Glad to hear that Tony is checking into it. Believe me, I am thankful for it being in place when I am down and needing my hubby. :wink:
Sorry to hear you were having a down day. I understand the lonliness. I speak to the ladies at church, and I email several friends, but I don't actually see or talk to many people day to day. Sometimes I would give almost anything for a little tea and company! (Not the kind that would care about my messy house, either. Just a kindred spirit to chat with.)
Yes, the winter is giving odd weather everywhere, isn't it? Here in the Northwest (Seattle area), we have had several days of beautiful sunshine (not that I can get out and enjoy it!!), with cold, cold nights. At least it is not depressing.
Hope you are having a better day today. Cyber hugs to you and spiritually there with you.


01-25-2008, 10:43 AM
I use the device on the water pick and it is not as bad or scary as it seems and it works well. My rheumatologist told me that chronic sinus problems are common in Lupus for the reasons that Suzique stated. I also use a nasal spray prescribed by my doctor, so the two together provides a lot of relief. So, believe me, we understand and Suzique, no it was not gross.....it is something that most of us deal with on a daily basis. Thanx :lol:

Peace and Blessings

sick n tired
01-28-2008, 11:10 PM
Hi Susan,
thanks for your response. I haven't been able to get to the store, but I plan on doing that tomorrow.

I think that a tea party is great. I'll come there first then you can come here. I would be like the kettle calling the pot black for me to have a problem with your messy house. I'll bet mine is worse.:-) I could sing that song: My house is messier than your house
My house is messier than yours
My house is messier 'cause I still have 8 kids living here
My house is messier than yours.

I think that I should be the next American Idol and sing that song..........do you think that it would sell?

Saysusie, Thanks for the info. I talked to my hubby about getting me a waterpick. that sounds interesting but until then, I will try Susan's idea until I get one.

humming myself to sleep........


01-29-2008, 02:12 AM

Although you'll find my house a mess.
Come in.
Sit down.
It doesn't always look like this.
Somedays it is even worse.

Author unknown
(A plaque I remember from one that hang from a nail in my Mum's kitchen in the pantry room.)

My next home will have machines, vending machines.

01-29-2008, 09:49 AM
I've been dealing with sinus related headaches all winter - and then nosebleeds. Yuk...not sure if I can do the water pik thing, though...hmmm.

A Roomba...vending machines...dim lighting...(to hide imperfections - both on me and my house.)

I like that picture - a very low stress household.

If someone is coming to my house to take the measure of my housekeeping, then I don't want them to come anyway....come for my company, or don't come at all. :lol:

01-29-2008, 10:52 AM
You guys are all wonderful! You make me laugh and feel much less stressed about the little things. Funny how you can let stuff like a messy house get on your nerves, until you put it into perspective.
Love the little song. I have a 7 year old that things his toys are excellent decorating pieces. Then my husband likes to go around the house looking at a section of the newspaper then laying it down the last place he was! Clutter, clutter, clutter. Oh, well. The toys and newspapers hide the dust! haha
I am on my second day of double (20 mg) prednisone. I was afraid it would have to go up to 40 to get some relief, but I feel a little better already, just at 20. I have not been below 10 for 5 years, so a small jump to 20 wasn't necessarily expected to do the trick.
I learned something at the rheumy's yesterday. The nurse practitioner told me that us lupus patients have been bombarded with viruses this winter, and even if they don't hit us with the same symptoms that they hit others, they are challenging our poor immune systems and causing lupus flares. Sometimes even with flare symptoms we have not experienced in the past (I read about some of you having weird rashes that you haven't had before). She said we have to give in to our bodies and rest, as that is the best weapon we have for the viruses.
Thought I would pass that on, so maybe the urge to rest would be heeded...


sick n tired
01-29-2008, 11:47 PM
Hi all,

I think a rhoomba.....vending machines.....a housekeeper too. Possibly a robot or at least one like Alice of the brady bunch. I do like the dim lights( mood lighting) sounds great to me.

Susan, I hope that the 20 mgs of prednisone helps and you don't have to go on more. It is great that you are feeling better, though.
It is interesting what you heard at your docs office. I have had some symptoms that have made me suspicious of that, too.

well, Hi-ho, hi-ho, it's off to bed I go,


02-04-2008, 08:53 AM
Machines....Since my wrestling match with a jar of Aunt Nellie Whole Beets I've been eyeing up jar openers. Big jar size..pickle size.

Oh, my aching hands,

sick n tired
02-20-2008, 01:26 PM
hey Suzique,

How are you doing? I haven't heard from you in a while, but I was off for some of it. Pain, stress(family), and just depression has been the cause of not replying to you.

I am still having trouble with the sinuses, oh well.....

I am having a hard day today, also. My family does not realize the one step forward and two steps back of this illness. They think that if I was able to get dinner for the last week then I must be well. must admit that I am still trying to get to know IT myself.
Tell me if you experience this: when stress or hard work comes along a delayed reaction from IT. That is what I seem to experience.

How are you doing on the prednisone? Have you been able to get off and just go onto plaquenil?

I do hope that all is well with you.

Lazing around,


02-25-2008, 06:15 PM
Gosh - sorry to take so long to reply. I haven't popped in on this section in a couple of weeks. I was doing pretty good (down to 20mg of Prednisone - not off, yet), then had a reaction to the new cholesterol drug. Made me sick, weak, and basically go into a flare. Spent last Thursday in the ER (doctor's office sent me straight there and wouldn't let me drive - I mean, I was SICK). Still really weak, but doing better.
Did you ever get to that ENT for your sinuses? What did he/she say?
I have caught a few of your threads regarding the family meeting, your large family (7 kids!!), and your activities in general, so I have kept up by reading them. I generally pop in here every day or two and read for 45 min to an hour before I tire. Sometimes I try to respond to what I think I can be helpful with, sometimes I am just too tired to do anything but read. Still, I am able to keep up with all of you, just by reading. It is nice to hear your support of each other. Gives me a sense of peace knowing you are all there. And Oluwa makes me laugh all the time!
Hard to know if the Plaquenil is helping, yet, with this drug reaction. Hopefully, by the time it (the chol drug) is fully out of my system, I will be able to see a response to the Plaquenil, and begin the weaning of the prednisone.
Thanks for checking in on me. Hope you have some good news regarding the sinuses soon.


sick n tired
02-25-2008, 10:41 PM
Hey Susan,

So sorry to hear that you are in a flare again. That is terrible. Did you stay in the hospital? Maybe this time the flare will only last until the meds filter out of your body.

No I have not been to an ENT. This has been an awful month. I think the best part of February, this year, will be March .

My daughter, 18 yrs. old, is ill right now and I am at a loss what to do. She has had what appears a recuring illness only it seems to be getting worse. Not sure what it is, however, because she does not test positive for what the doctors want her to test positive for. (flu,bronchitis,strep,etc...)

All I know is what she doesn't have. She doesn't have the flu and bronchitis and pneumonia and stomach flu.... Whoopie!.... She has pain in her chest,back of her neck,head, and very high fever. The higher the fever the worse the pains. The only thing that is keeping the fever at bay right now is a regular dosage of tylenol. Now tylenol does not bring it back to normal it brings it back to 100. or 101. Ibuprophen does nothing for her and aspirin doesn't either.

We went to the emergency room on Saturday. All they did was test her for flu and do a chest scan. No blood tests. The diagnosis was possibly flu even though the test is negative. He then prescribed antibiotics for the virus. If you ask me he was just trying to strike in the dark and hedge all his bets. A high white blood count (something she found out the day before at a clinic) and high fever means infection.

I made him angry when I asked him, "which part of 'mother has lupus' do you not understand? I know he is not a rheumy, but this is the 3rd doc that I have taken her to and get the same stuff. It is like there is an unwritten rule, if you can't see it it does not exist. I am so exasperated.

So how high is your cholesterol? Has the doc placed you on another cholesterol drug? I understand that there are times that you don't feel like answering a post. I find if a day is particularly draining, I just dont have it in me. I think that it is a laugh to say to stay away from stress. This month that is all I have been under.

So ....here is to March.

Praying for your flare to go away,


02-26-2008, 12:17 PM
You are so sweet - thank you for the prayer.
Have they even mentioned spinal or brain issues? I would be concerned about ruling out meningitis, with the neck and back pain along with fever. Also, as you said, Lupus. Fever without know cause is certainly a known symptom of IT.
You have really had a month, haven't you. So sorry to hear it. I will pray for you, too. Sounds like you could use the support. Are you getting any rest with all the things happening? Hard to keep facing the challenges without strength.
My cholesterol is quite high. 260's, I think. I eat little fat, never have liked fatty foods or much red meat. But both parents have very high cholesterol, and they eat a nearly vegetarian diet (they have a huge farm and grow their own). I was on a combination drug and tolerated it, but one of the components has been found to be useless, and my insurance made me pay high co-pays for it, so the doc switched me. Guess I need to switch again. Sigh.
Well, I really need to get to my studying. I have neglected them lately with being so sick. Gotta catch up.
Take care, my friend.


sick n tired
02-26-2008, 10:02 PM
Hi Susan,

I had the insurance problem with a drug that was prescribed for my esophugus problem. the insurance refused to pay for the nexxium even thought the drug they say works the same does not with me. Even with the doctor writing them, they refused to cover it. I am trying another prescription, but with all the "drama" this month, I have been sick many nights. i actually think that Barretts will take me out long before the Lupus.

So, What degree are you pursuing and how long will it take you to complete it? It sounds great that you are trying this approach. It is like the saying, When God closes a door he always opens a window. Maybe you found the window.:-)

My husband has high cholesterol and refuses to take meds for it. He is trying to control it by diet. The only problem is he is pretty fit and tries to eat right. It seems like he views it as a weakness to have to take medicine.

Well, it has been quite a day. Nadia still has fever. I am trying a new doc tomorrow. I was worried about meningitis myself, but she was able to look down.

"see you" later,


02-27-2008, 11:00 AM
That is good (that she can look down - big suspicion if her neck was "stiff").
My hubby is the same way! Even taking an advil for a bad headache is stretching it for him ("Oh, it'll go away, if I just give it time.")! Being fit and eating right is not always enough with cholesterol. There are those of us who have a hereditary predisposition to have high cholesterol, and none of our good efforts seem to work. I've seen it many times.
I have been an RN for 25 years now. I have tried all sorts of areas in nursing to work around my illnesses (primarily Crohn's Disease and Lupus), but it just doesn't work. Too many days of not being strong enough to just "make it" through the day. Makes me an independable employee (Only a problem with the last job. I finally gave up and went on disability.). I needed something that I could schedule when I was up to it, but let no one down when I was not well. In my searching, I found that there is a fairly new speciality in nursing called Legal Nurse Consultant. They can work in Risk Management in a hospital, work for the government, insurance companies, attorneys, etc., reviewing medical records and rendering summaries and/or time lines. It can be done as an independent, scheduled to my convenience. Also, since it would not necessarily be full time, I am allowed to earn up to a certain amount without being forced off disability. Let me get my feet wet before plunging in, so to speak. Anyway, the course of study is a year long, and it is primarily legal training. It is really interesting. Some of my nursing friends are a little "put out" with me, as if I have deserted them for "the other side." Many nurses view attorneys, particularly personal injury attorneys as trying to catch them doing wrong. My point of view is, if a nurse is not doing wrong, she/he has nothing to worry about. If they are doing wrong, they should be called on it. I know there are "frivilous" law suits, but a good legal nurse consultant would tell the attorney that just cause is not there and refuse to have anything further to do with that case. I would be that way.
Oh, well, anyway, I have rattled on enough. I am very excited (as you can tell) to be doing something specific with my future. I love quilting, crocheting, gardening, and so on, but I needed to be doing something more. I am hoping this is the answer.
By the way, I had the same fight for 8 months with the insurance company over Nexium. I didn't respond to the other drugs, either, and I have severe reflux. I was up with pain in my chest and "reflux" in my mouth many nights, before they finally gave in and approved it. I still have to be careful what I eat and how much, even hours before bedtime, but it is manageable. I hope you are able to get some decent resolution to your suffering. If you ever get it approved (after failing two of the other drugs, I think most insurances will go on and let you have it), call the company (AstraZeneca 1-800-796-3948) to get on the Purple Plus program. They send you a bunch of literature about reflux, etc., and Nexium, but the important part is they send you a card you can use at the pharmacy to help with your co-pay. It takes off up to $30 of your co-pay! Mine is $50, so I really appreciate the help. Any other friends out there taking Nexium, please take advantage of this. We pay enough for medications, that I for one think giving us a little relief is great! I can't remember if they do this for 6 months or the full year, but either way, that is a lot of savings.
Well, that is all for now. I should get back to the books. Take care.


sick n tired
02-27-2008, 08:28 PM
Hi Susan,

I hope that today was a great one for you. Your new work sounds fasinating to me. I really hope that you enjoy it as much as nursing.

Not able to talk much, today. I feel like a huge weight has landed on me. I am sluggish, and tired. My whole alimentary tract is acting up. Cant keep much down, no appetite, what stays down causes watery intestinal distress. I am very depressed but it could be because I feel like I am walking through jello........soooooo sluggish. Maajor brain fog. Started yesterday when I was writing you. Could not remember how to spell door. Tried dore,doar,doer, etc...Finally I went on word and typed a sentence with the word dore in it and pressed spell check to find out it was door. :)

We took Nadia to another Dr. today and he thinks the pain is pluresy. Her fever still persists. He thought maybe it was a little bronchitis, but not sure that he heard anything except the pleuresy. She seems in better spirits, though.

Well I am going to go to bed as I am not worth much right now.


sick n tired
03-24-2008, 11:53 AM

I am missing you. I am sorry as I posted on another time that you are in a flare....Again understand that I am here if you ever need to talk or vent.

In Him,