I guess I am one of the lucky ones on the board from what I am reading. I had my first real flare starting over easter- where I couldn't move/cook/open cupboards/take care of self etc. After a week of fatigue/temperature/headaches/painful and itchy skin rashes and being told I was having an allergic reaction (despite the fact that it didn't get better with antihistamines) they did some tests (positive ANA, RF, CRP etc but negative ENA- still waiting on dsDNA), refered me to a doc and put me on prenisidone. Love that stuff by the way- I had my energy back, my skin stopped that awful burning and I could move again. Then they decided to take me off it :shock: and refer me to a rheumie . Not happy. After many phone calls begging to get in to see him sooner (it would have been months without prednisidone) they got me in and I got my diagnosis. They have put me on plaquinal (sp?) which they said would take a month to work and we are waiting for another flare for more tests (it seems to be a bit better- my skin is reactive and painful but not red/burned, my muscles and joints hurt but i'm not crying every second from the pain, ,my chest started hurting though , and the fatigue is good enough for me to go to work for 1/2 days).
After the diagnosis though I looked back on my health over the last few years and it all makes sence now!! All these little things which I didn't mention to the Dr. They all add up..
Still I think my DH is worried. He wants another diagnosis mainly because he doesn't like this one. He keeps saying how serious it is, and all these ways i can die . I'm telling him i'm on the meds and they are new and better and he is saying it is just slowing it down (which is sorta true I guess). He keep saying he wants me to be *realistic*. *sigh*. I don't feel like I am in denial. He is a Dr and he does see the worst cases- but it is tiring hearing all this all the time. The stupid thing is that despite this he is still annoyed at me coming home from work early as "we need the money" :? . Hopefully he will start to understand soon.
I am releived for the diagnosis. It has been over a month now of pain. I can't imagine going for longer. I have an appointment with a psychologist on the weekend (I also have a history of depression/anxiety) so I will talk it over with her.
One of the things that hurts the most is that we were actually trying to concieve. For the last 16 months. I had just made an appointment to start serious fertility testing. I'm worried about having the anticardiolipin/antiphopholipid ABs as I have a history of DVT, headaches and peticial rashes. After all this time trying to get pregnant, I don't think I can handle a miscarriage in the future. We have been told to absolutely not get pregnant right now- which hurts as we have been trying for so long. I've done a whole lot of reaserch in the last couple of days since the diagnosis and I now agree that it would be completely irresponsible for me to get pregnant- but it still hurts...
Anyway- just looking for other women to relate to, other people who have gone though this.
My new GP just diagnosed me with Lupus a month ago, so I'm going through many of the same things that you are. I'm waiting very impatiently for July 13 to see the Rheumy. Unlike you, I'm on no meds at all yet. I'm really worried about the shortness of breath and chest pains. I'm beginning to wonder whether my summer is going to be spent in doctors' offices. I'm not very enthused about that, and I certainly don't want to miss my two planned trips this summer.
Like you, I think that I had a doozy of a flare over Spring break in March. I had chills and fever and three migraines over the nine days of spring break. I blamed it on spring allergies, but now that I think about it, I'm thinking that it was a flare. Like you, as I look back over the last several years, everything fell into place. I think that I've been having symptoms for 7-10 years, but my former GP would never listen to me with all of my "little" complaints.
I'm a teacher, and it really worries me to read about how so many of the folks on the list have had to stop working or switch to part-time. I just can't take off of work that easily. For me, it's not the money so much as it is the responsibility. I'm the only Latin teacher in the school, and I've worked for 5 years to build my program. No substitute can come in and do what I do, since there are so few Latin teachers to be found. I'll have 5 kiddos depending on me to prepare them for the Latin AP next year, as well as my usual crop of underclassmen. I love teaching, the kids need me, and if I have to take off for long periods of time, my program will die.
I just found out that our female police officer at school has been dealing with Lupus since 1997. She is a real inspiration for me! She's so sweet and she told me that she often has to go into the hospital for chemo, etc., but always sets her sites on getting back to "her" 3000 children at the school. I'm new to this, but I think that your doctor was being a bit too grim. I think that Tami, our police officer, is a good example of how a person can keep going in life!
I keep reading that good pregnancy outcomes can happen with the right kind of care. I can't help you with this, since all of my children are grown, and I'm a grandmother, but I'm sure that someone on the list has some experience. Don't give up hope. My daughter had salmonella at the time that she concieved, has very severe asthma and allergies, and only has one working kidney, but she came through her pregnancy like a champ and had an extremely healthy little boy. Kyle is almost 2 now and he's a little wild man, who has Grandma and Grandpa wrapped around his little finger. If Kayla could do it, so can you!
Please keep us all informed about what happens with you this summer, and know that you are not the only one beginning this journey.
Hi and thanks Marla,
Sorry- I'm terrible at explaining. My GP managed to get me in to see the Rheumatologist a couple of days ago. The GP refused to diagnose me- though I suspect he knew exactly what it was. I couldn't get any of the other meds until I saw the rheumy and was officially diagnosed. I did see the tests though and I *knew* it was either lupus or scleroderma. My initial results were more classic of the latter- but my symptoms were of the former.
Most of the signs in the past 5 or so years were so minor- I would just mention them to the dr in passing when I was there for something else. I just didn't see anything in it.
I have found many encouraging sites and articles on pregnany and lupus. However one thing is clear-- I should absolutely not get pregnant now!!! Unplanned/unprepared pregnancys are associated with higher flares, higher miscarriages, higher premmies, higher deaths etc. I just need to get stable and then try...
It was my Dr hubby that is saying how terrible the illness is and how I am going to die. He works in a hospital- so he sees everyone when they are really bad. He doesn't see the nice healthy lupus patients. He is compleaining about me taking time from work-- but really we don't need the money- we will be just fine on his salary. I don't see why I should be making myself sicker when I feel so bad.
I'm lucky= I can take time from work. It isn't a 9-5 thing. I'm thinking of taking some leave this month and visiting my parents for a bit. I'm pretty useless around here until the meds kick in. I don't know if I would keep going back to work like you are. It would be so hard...
what I find so strange is that despite everyone saying how rare lupus is (my rheumy said that too)- everyone knows someone. I know one person, everyone at work knows someone etc.
Maybe I am in denial-- I still can't see myself as sick-- I guess that is a good thing in ways. Sure I hurt, my skin is nfire: and my chest feels like there is someone sitting on it all the time but I still feel like it is temperory and in my head I don't understand why I am on the plaquinil (sp?). By the time it works- how do I know it wouldnt have gone away anyway. I guess I am looking at others with lupus and thinking- I'm not *that* bad. Sure I *was*, but not now. Does it get worse with time? Can I expect things to go downhill from now??
I'm in Australia-- so just starting winter now. I guess it is good that I won't get sun- but the cold gets me too :? . I don't have classic Raynaulds, but I do have issues freezing hands and feet.
Welcome to the Forum! I'm glad that you found us!
Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!
I'm SO sorry to hear that you have been going through such a tough time :cry:, but please know that you are in my thoughts and prayers...
Like you, my job isn't a necessity, but I sure enjoy doing it. I started teaching back in 1978, but I stopped after 2 years to follow my Air Force officer around the country (we've lived in 5 states) and to raise 5 kids. I've been a sub teacher after we moved to Texas. 5 years ago, my friend was named the principal of a new high school, and she talked me into getting back into full-time teaching. I've been totally amazed at suddenly having a career again after 21 years of not having my own classroom. It feels good! It is also a huge responsibility to teach 85 teenagers every school year. Some days it is difficult to get up and drive to school, but there are a few kiddos there who make it all worthwhile. They watch out for me, too. They remind me to use my cane in the crowded halls, and the boys have promised to come and carry me down the stairs if there is ever a fire in the building!
With kids like that, how can I let them down?
I know what you mean about the heavy weight on your chest. I feel that way too, and it's very difficult to finish a sentence on one breath. (This from someone who used to sing onstage with a semi-professional group). My voice often wavers and gives out when I'm talking. My husband told me that I sound like a very old lady. That is pretty rough when the "old lady" has to be heard over 18 noisy teens in one room!
Man, I hope that the rheumy that I'm going to see doesn't give me the hassles that you've run into. Why didn't he want to give you a straight-up answer on your diagnosis? If he's started you on the meds for Lupus, doesn't that imply that he has a diagnosis in mind?
Australia - WOW. That is one of the places that I want to see before I die, including Rome, Athens and Pompeii.
Thanks Ilovehistory. It is nice to be able to talk to others that are going through the same sort of thing. I guess I am still a little lost.
He again Marla. I think my GP didn't want to give me a diagnosis as he wanted to leave it to the rheumie. He didn't want to give me a diagnosis and be wrong. I suppose I respect that. I have heard of others getting their "diagnosis" taken away and all the fall out from that. At the same time I do wish he said more. He did say he thought it was a connective tissue disease. I already knew that :?
Also I think I am going though denial :? . Like before I was diagnosed I was switch my diagnosis through either scleroderma and lupus by the day depending on my dominant symptom of the day. Now I have a diagnosis I wonder if the "days" symptoms were colouring what I was reporting. I know that is crap though. I feel better today also- so I think maybe.......................... it was a virus (nope) even though I know my own history points to lupus. Even though I know the labs point to lupus............... Maybe it will go away, maybe I can keep trying for a baby, maybe this is rubbish, maybe this fatigue is in my head and I am just making excuses for myself. going :twisted: insane here!!!
I'm thinking of visiting my family- going back home for a bit and having DH hold down things here. He isn't really being supportive. Work is to hard right now. They would probably encourage me to go..
I hope that you got to go visit your family. I'm up to my ears in family right now. My husband is on a military business trip to New York, so he extended his stay in order to spend some time with our oldest daughter who lives in NYC. Instead of leaving me alone to my own devices this weekend, another daughter and son-in-law have taken it upon themselves to "take care of Mom". They have been working on the lawn, and Kayla has been cleaning up the kitchen. They even went with me to the commissary (Military for grocery store on base). The help has been wonderful, but the 2 year old grandson wears me out. Now they are planning to BBQ at my house tomorrow and are inviting the other siblings and significant others. Family is wonderful, but they just don't know how much I treasure my alone time when they finally go home. Oh well, Jeff will be back tomorrow.
By the way, I think that my hubby is more in denial than I am right now. He has degrees in Science, so I think that he has a pretty good idea of what Lupus is all about, or at least has looked up some information. He just keeps making light of it, and seems sure that the rheumy will say that I have some very mild form of it. From the research that I've done, I don't think that will be the case. I plan to drag him with me when I have my appointment (as long as the Air Force doesn't send him out of town at the time). We've faced a lot of things together over the past 30 years, (Including my mother - but that's a whole different story), so I'm sure that once he gets his mind arond what is going on with me, he'll be ready to give me the support that I need. He has said that he doesn't want my warranty to run out yet, since he was planning to keep me around for a long time. ha ha.
Perhaps your hubby, being another scientific type, needs the same thing that I think Jeff needs. Maybe if he accompanies you to your appointments and has the chance to "consult" with your doctors, he can feel more in control and feel that he is contributing. Isn't that what all of our guys need - to feel in control?
I hope that you are having a great week end.
I just read where you said you had skin burning... For the past few days my arms have felt like they were gonna combust. Mainly at night but they felt like if I dripped water on them you would hear that sssss sound. I just got off of a medrol dose pack b/c my lungs were inflammed. My dr didnt know the cause for the burning. He just tells me to tell the Rheumie when I go on the 27th of this month.