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7/7Baby
New Member


Date Joined Jul 2011
Total Posts : 4
   Posted 7/25/2011 7:03 PM (GMT -6)   
I was diagnosed with SLE in Oct.2010. I then concieved my first child in feb.2011. My journey started about a year and a half ago. I was always sick. I stayed in the emergency room for the greater part of 2010. Through out the year i had noticed bruises all over my body, like my stomach and back. they were all unexplained. At first i though i was just being easily bruised. My mom suggested i make a doctors appointment with our family physician. I did and on Oct 18 i went to see her. She had some labs drawn and came back into the room and told my my platelet count had dropped to 3,000. I was in danger of bleeding internally. She told me i would have to be admitted into the hospital with a diagnosis of ITP(Idiopathic thrombocytopenic purpura). I spent a week in the hospital with doctors and nurses running all kinds of tests on me. I became a human pin cushion. i had atleast 86 small scabs on my arms and hands. 6 veins had blew. after a week of 100 mg of perdnisone my platlet count came up to 150,000. I was blessed that nothing had burst inside of me. I went hom on 100 mg of prednisone, calcium, vitamin d, and iron. I had become severly anemic during my stay. about 2 weeks later  had an appointment with  hematologist. I went to see here and she told my while i was in the hospital they had did more blood test to see if i had lupus. I was then diagnosed. My family and i always new that it was a possiblity tha i could have it because of all the trouble i had been through in the past year. She then set me up with a rhematologist. I went to see him and i told him my hands had been hurting. They took xrays and i was then diagnosed with arthritis. they put my on 100mg of plaqunil x2 a day. I have been to my rhemy 3 times since that visit and i find him not so helpful. I have had flare up and found that my birth control made me sick. My fiance and i used protection whenever i was u for it, which wasnt very often. but it only takes once and i concieved my son. since finding out i was pregnant i have had a couple flare ups and my rhemy wants to me back on prednisone, but i dont think i can do it . I found myself in a slumped and extremly depressed the first time i was on it and dont want to feel that way again. but iim not sure if i want to keep going through the pain of the flareups. i cant take anything for pain except tylenol so im somewhat stuck. Now im hearin that for the birth of my child i cant have an epidural. I have yet to talk to my doctor about it but i will.  I find that my family dosent understand why sometimes i lay in the bed all day exremly cranky and irritable. Between the pregnancy hormones and the pain i am a real *****! sometimes. i just need some help dealing with the lupus. i dont have anyone to talk to about it and sometimes i do need to vent..

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 7/25/2011 7:24 PM (GMT -6)   
Vent away! It sounds like you've had a bumpy road.
You can ask for a different Rheumy.

Why can't you take other pain meds?

I'm on plaquenil but I take more than 100 x2 a day. The standard dose for plaquenil from what I've read is 200 x2 a day.
How long have you been on it? It can take 2-6 months for it to kick in. It took 6 weeks before I even felt some relief from it.
Joy

AZ N8ive
New Member


Date Joined May 2011
Total Posts : 11
   Posted 7/25/2011 9:32 PM (GMT -6)   
Oh my, of course you need to vent! I'm glad you did. I have 3 children, before Lupus. I had ITP first also. I had that in 2002, and was diagnosed with SLE in 2008. The plaquenil took 6months to work for me. My advice is to exercise every day, even if it is just range of motion! I had kids before they started using epidurals on a regular basis for labor ( I'm 55). I ended up having c sections, but was in labor for 21 hours with the first one before having the c section. It was a hard labor, but the only thing they gave me was demerol so I could rest, which was a joke! The better shape you are in, the easier your labor will be. Good luck, and keep in touch. When is your baby due?

Rovngypsy
New Member


Date Joined Jan 2010
Total Posts : 18
   Posted 7/26/2011 2:53 PM (GMT -6)   
You have every reason to be a %&#*%.  I have had lupus for approximately 20 yrs.  I have been diagnosed for 10 and I never thought I could make it this far with this disease. 
 
As for your rheumy, imo, not many are that knowledgable about lupus.  When I was dxed, my doctor did not even have a brochure on lupus and it is a very large rheumatology practice in a large city.  Even now, when I complain of some symptoms, he will say, "I don't think that has anything to do with lupus, none of my other patients complain of that".  Then when you read the forums and if you participate in a local support group, you do find the majority has the same symptoms.  I feel like the docs don't listen to us very well because there isn't much they can do.  Lupus is a difficult disease to understand and it affects ppl in different ways.  True, we will all have some of the same symptoms, especially joint pain and horrendous fatigue, but then the symptoms can be quite different.  Some meds work on some but not on others.  IMO, I don't think lupus should be classified as a disease of rheumatology anyway.  Why do we not see doctors that specialize in immunology diseases, since that's what lupus is.  The joint pain from lupus is not arthritis, however, you can have arthritis with lupus, such as osteoarthritis and that of course would be treated by rheumatologists.  Each appt I have, he asks the same questions; how many times have I had to take prednisone, for how long, and what symptoms did I have"  I get so tired of telling him the same thing over & over.
 
Anyway, there is a book by Dr. Daniel Wallace which is titled "The Lupus Book", which is the best book written about lupus.  Dr. Wallace is a long time lupus specialist and one of the best in the world.  This book will help you to understand this disease (as much as it can be) more than anything else.  This book really helped me and also my husband to understand what I was feeling and what to expect.  Absolutely a must have.
 
When I was dxed, I had never even heard of lupus and didn't have anyone to talk to about what I was going through. I did exactly what you are doing.  Turned to the internet and forums.  The forums helped me so much.  I found that ppl who have the disease knew so much more than the doctors.  They can help you when you have symptoms you may not have had before and whether it's part of lupus or not, because believe me, it can change sometimes from one flare up to the next.
 
Understand completely about family and also friends not understanding when you don't feel good and you are just plain tired.  There will be many days when you just don't have the energy and you must lay in bed all day.  They will tell you if you get out of the house, you will feel better, if you do this or do that you will feel better or you're getting depressed and on and on.  It's hard to ignore it, but you'll have to.  Ask them to read up on what lupus is and then they can try to understand, but until they do that, then don't give you advice.  No one will ever "get it" unless they have this disease.  It's unbelievable how bad it can make you feel and how bad the pain can be.  It's so difficult for anyone else to understand because one day we can look great and even feel great and the next day or the next 5 minutes, we can be deathly ill.  I moved 300 miles to be closer to my family so they could help out and that was a big mistake.  In the beginning one of my sisters would prepare a meal and drop it off occasionally, but hasn't done that in 9 yrs.  No one has ever offered to help with housework or anything else.  My friends would have helped me more than my family has.  Hopefully your fiance' is a good support system for you.  It will be tough on him as well, but if he loves you, he will be there for you and the little one.  It takes a lot of patience.  When one person has lupus, it's really like the family has lupus. 
 
There is so much in the beginning.  You will grieve the life you have lost.  You will be angry and ask why you have this disease.  You will be frustrated because you can't do the things you once could.  Acceptance is a huge part of coping with lupus.  And it is the hardest thing to do.  Estimate it will take about a year or two before you really accept that this is your life now.  And. . ..  . also, don't ever lose hope, because you can go into remission.  Some ppl don't have bad flare ups and others have terrible ones, so you can never tell.  Prednisone is a horrible drug, but at the same time, it is a life saver many times and we do not have any other options to get us out of a bad flare up.  I used to try not to take it and would wait and see if I could tolerate it until it went away, then I would wind up having to take a higher dose to get it to calm down.  My rheumy convinced me it would be better to take it when the flare up start and I could usually take a lesser dose.  Some ppl respond well to the immune suppressing drugs and some do not.  Plaquenil helps some ppl and some can't tell any difference. 
 
What will help you the most and especially being pregnant, is getting a lot of rest, as little stress as possible and listen to your body.  When your body is tired, listen to it. If you're sleepy, go to sleep. Doesn't matter how many naps you take.  Take them when you need them.  You will learn there are certain little tell tale signs that let you know your lupus is going to flare up.  For me, I usually have headaches about 2 days before it flares up and I am more tired than usual and just want to sleep.  I have learned the hard way to rest more and to stop questioning myself, such as, "am I tired or just a little lazy?"  It's always "tired" and if I push it I am going to pay dearly.  Don't think about what other ppl think.  Don't worry that your house isn't spotless. Don't worry about not being able to go to the family dinner.  You really have to put yourself first.  Accept help when it is offered.  Pace yourself.  Learn what you can do and what you can't do.  If you can exercise at all, if no more than walking, then do so.  It will help you be stronger and help you during delivery.
 
I know you're scared of the delivery without epidural, but then again, all deliveries are different also.  It has been my experience, having a baby usually isn't near as bad as some ppl say.  Some ppl take pain harder than others and some don't see it as pain at all.  I think you probably hurt much worse with your lupus pain than having a baby.  Most ppl will tell you it's like having bad stomach cramps.  And. . . . you know if it was all that bad, ppl wouldn't have more than one.  I'm not making light of it, because for some ppl, I'm sure it can be rough, but for the most part, I think most of them will say it wasn't that bad.  Your body has a way of numbing itself, especially as our bodies were designed to give birth, therefore it was designed to handle it. For me, it wasn't bad at all and I couldn't have any meds due to a problematic pregnancy.  That was 35 yrs ago, but it's something you don't forget.  The doctors are not going to let you get stressed out.  They will take care of you and there are mother-to-be classes which teach you how to breathe and other things.  Lots of ppl have natural births now.  Don't worry to much about it. 
 
I know this is super long and I hope I have helped you a little bit.  Ask any questions and I'm sure you'll get some answers and definitely it's okay to vent.  Someone on here will always listen.  If I can help in any way I certainly will.  Hang in there, it takes time.  I'm so sorry you have to go through this and I do hope with all my heart, you are one of the lucky ones that go into remission. 
 
Gypsy

7/7Baby
New Member


Date Joined Jul 2011
Total Posts : 4
   Posted 7/26/2011 7:17 PM (GMT -6)   
@ Joy- I dont know how but my family doctor believes that ibprophen some how help cause my ITP, so i just kind of stay away from anything to do with it.
 
@ AZ N8ive- My baby boy is due November 19 and thank you the advise really helps. this being my first baby and i am kinda newly diagnosed im scared of all the "possiblities"
 
@Gyspy- this really helps me so much. My dad and my cousin have it. My dad has the skin kind and it really doesn't affect him like it affects me. My cousin is going through a really rough time right now. she did just have her first child also but, i guess that she didnt take lupus serious enough because she would stop takin her meds because it messed up one thing but helped the other. Now she has an infection gone rapid and her body is so weak that the antibiotics may kill her. I pray for her everyday. And this makes me take my medicine faithfully. I went to my rhmey today and i was telling him what was going on with me and why i couldnt take the prednisone. I told him it made me sick when i started it. And of course the doctor knows all, he told me it was impossible for the prednisone to make me sick and that maybe it was because i was pregnant. My whole pregnancy i haven't really been sick at all. The flare ups are one thing, but pregnancy sickness has been out. I wanted to ask him "do you have lupus? Do you know what i feel on a day to day basis?" of course i didn't but seriouly wanted to get an attitude. I also told him about this rash that itches like crazy on my arm and i was ignored. I guess he figured he is a rhematologist and not a dermatologist. Last time  checked his badge said MD with speacilty in rhematology.
 
My mom has tried to understand whats going on with me, but doesn't know the extent. I used to work as a CNA and the job was so strenous on me. I tried to play superhuman and realized in the end i was killing myself. I developed chest pains and everyone kept tellin me it was nothing wrong. I had an echocardiogram done ( the last resort of my hematologist) and it turned out my pericardium was inflamed and i was having palipatations. i went home and cried the night away. i stressed myself worried about my health and my hair started falling out. since then i just try to look on the positive side of everything and try not to worry to much about it all
 
My fiance is a great help to me. Eventhough he knows nothing about lupus and how it affects me he is always doing stuff for me. i love him for that even though he doesnt understand the disease. he stayed with me the whole week i was in the hospital and a couple days after i got out just waiting on me hand and foot. I love him for that.
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