Got my Diagnosis

[Ellen]

As you all know. I am very ill. I was diagnosed with Lupus and Factor V clotting factor. Does anyone have any experience or help to offer as far as suggestions on how to help aid in getting myself into remission.

Our family has become so stressed, numerous hospital stays, bills and all that goes with it. We are scared. I have 4 young children and hope remission is near. Can anyone offer help, with experiencec or suggestions?

 

[dreaminmini]

I am sorry I do not have any knowledge or experience to impart. I just wanted to say my thoughts and prayers are with you and your family. Hopefully, you go into remission soon and you get the help and info you need to make it happen.

 

[shorthorsemom]

Prayers to you and your family.

I can't recommend anything except for you to be sure your doctors have checked that your vitamin D levels are normal. You can google vitamin D and lupus for more information. Best wishes for remission soon.

 

[AppyLover2]

The only help I can give is my prayers that things get better soon.

 

[~Lisa~]

I wish I could help. I have a disease that is similiar to Lupus only it is more rare and once you are diagnosed with "Chronic" remission is just sort of a pipe dream lol

Many of the symptoms are the same so I do understand your frustration and the feeling of just wanting your life back. You do not want to complain- you do not really look as horrible as you feel so it is hard to others to truly understand how sick you really are. The pain daily- the dealing with a totally schitzo sickness and never knowing what you will wake up to each morning and how different it would be from the day before. I have tried several medications to try and lesson the progression of the disease but finally decided for me the side effects were not worth it and am now just dealing with it short of some pain meds when needed.

Find a support system- and a good doctor. My doctors here have no idea about my illness and have to look it up online when I see them (like I couldnt do that myself) so I really just go to get prescriptions of whatever meds I thought I would like to try LOL You should have a bit more luck with knowledgable doctors for Lupus so that will help but still you need to find people who understand the sometimes daily struggle to do normal things and the craziness you feel when one day is not so bad the next is horrible and then back again

Keep a sense of humor it was all I could do when my hair started falling out in places and I have a couple small bald spots (real attractive) then my eyebrows started falling out but only half of them so now I have some freakish clown half eyebrows..cant help but laugh about that

I know I didnt help alot I wish I had a magic answer for you but I can tell you there are others out there who understand and do plenty of your own research online you might get some whack jobs out there with ideas but you never know what can help- look for online support groups and perhaps you can find some in your community I really think it helps to talk to others who get it.

 

[Crabby-Chicken]

I am so sorry to both of you guys, Ellen and Lisa. It must be the most frustrating thing to not to know what you are fighting that day. My prayers are with you both.

 

[~Lisa~]

Ellen I am not sure if you have seen this already or not..while it will not help you I think it is very helpful for friends and family to help them really try and understand be it Lupus or one of many other illnesses

spoon theory

This first time I read it I really just cried and cried.. I think more so cause I was almost happy in a wierd way. I guess it felt nice to know that others were going through it as well even though you do not wish it on anyone

 

[HGFarm]

I have a couple of friends who have Lupus, one was diagnosed at about 14 with the worst case they had EVER seen in someone that age. She was told she would not live to see 18. She is now 26 I think, maybe 27 and working and dealing with it. She has had a couple of really rough episodes- and I think stress can really make it worse- the last time she was in the hospital about 4 years ago, they had the crash cart in there 5 times.

I have another friend who has successfully added two children to her family and is doing ok.

I know both are careful to STAY OUT of the sun and not to get over heated or over do things.

I dont have much info for you either except to TRY to not over stress yourself and the medications can help. Read ALL you can and yes, a good Dr. is vital!!

There are a couple of different types of Lupus also I understand, more of an 'internal' and an 'external'.

 

[twister]

Ellen I don't have any advice for you but my prayers and thoughts are with you and your family at this trying time, I hope you get remission real soon.

<HUGS> Yvonne

 

[rockin r]

All I can offer you is support and prayers..I agree, a good support group would be very benifical....

 

[Mona]

Sending you prayers, hugs and well wishes Ellen.

 

[bluetaterbaby]

Please know that my prayers are there; as are our fellow forum members. They are awesome.

God bless,

Joan

 

[Pepipony]

I was misdiagnosed with Lupus 16 years ago, dont doubt that you have it, just do some research and make sure since some treatments that are for lupus , are bad for other things. I do however have the FV Leiden. Make SURE that they dont put you on aspirin or Plavix, these are for platelet clotting and have NO use for FVL which is fibrin clotting. I cannot think of the rx for FVL, since I take the herbal which is a soy based med. This is one thing that you cannot skip taking, you may notice that headaches will go away. For me, most of mine seem to have gone. Also, with FVL , we have a higher risk of stroke, the more damaging type and of course PEs, so if you are stuck on a plane etc, get up and move.

Luckily there are numerous help lists on line, if you cant find one locally. Seems that people on them know more than most Drs ( but of course research ANYTHING that they tell you) Good luck!! Heather

 

[Maxi'sMinis]

Sending prayers of healing and strength.

 

[wpsellwood]

My mom has it. She was so bad for about 5 months one summer that was about 15 or 16 yrs ago. She has been in remission ever since. Try to stay stress free, she was told to stay out of the sun. Thats about all I know and Im so sorry you are going through this.