Glad to join the family
My name is Monica and I hava lupus (sounds like an AA mtg.huh). I have been visiting you site for about a week and you guys are really awesome, supportive, knowledgeable,caring,empathetic, etc. All those fine characteristics we need.
Well, here's my story. I got married in April, found out I was pregnant in May. I have a son that is in his teens, so I was not new to pregnancy but something was strangely different. I began to hurt all over my body. From my teeth to my baby toe. I went to the emergency room twice because the pain was so bad and all they would say is that it looked like I was dehydrated. So, my husband would try to pump me with fluids. I told him I knew this was not about being dehydrated and something was REALLY wrong with me. This all began in June. Some docs didn't want to touch me because I was in my first trimester. Well, my PCP ran a battery of test and said my enymes were really high and I need to see a Rheumatologist. The rheumi ran more test and I was diagnosed with Lupus. After reading about so many that take years to get diagnosed, I feel really blessed that they diagnosed my early. Prior to getting pregnant I never had any symptons although my ob/gyn told me in March and May that I had a urinary tract infection after my well woman's ck up, despite the fact I had no sypmtoms. Well I know now that was the protein spliiling over into my urine from the lupus.
The rheumi gave me a Metro pack and told me as long as I didn't have alot of pain I didn't have to take the prednisone, which she prescribed, everyday that I could take Tylenol Arthritis. I didn't want to take too much because I didn't know what it would do to the baby. So, I didn't take anymore after that pack. From the end of June to the end of August I didn't have any.
My ob/gyn sent me to a perinatologist (peri)on Aug. 21st. I had been feeling bad the week before but couldn't pin point a particular sypmtom and didn't know whether it was because I was pregnant or the Lupus because it was new to me. The peri said I didn't look well and she ran some test. Also on that day we found out we were having a BOY. After her test, she said I was in a Lupus flare and sent me directly to the hospital. On Aug. 22nd, after the hospital running a battery of test, she came around 8 at night and said I was really really sick and if I would have stayed at home like that another week I probably would have died. she said the lupus had gone to my kidneys, which I now know is lupus nephyritis and it I had to deliver my baby so they could work on me. She if I tried to continue with the pregnancy,so my baby, could have better chances of survival we could both die. My husband and I prayed about it and the next morning I woke up and Paula White was on the tv. She looked right into the screen and said sometimes you have to give GOD back the one thing you wanted so bad. You have to offer it back to GOD. So I did. That was my sign. I delivered my baby on Aug. 24, but he did not survive becuase his organs were too underdeveloped. But I saw him and he looked so peaceful so I felt okay.
A couple of days later I received my first catherder and began dialysis. Three times a week for 4 hours. But before I left the hospital, I got a blood clot in my arm, had about 4 blood transfusions because I kept losing blood but they couldn't find out where, had extreme gastro problems, though I was having a heart attack one night- it was Congestive heart failure (CHF) and had plurisy(?) (fluid in my lungs). And I began chemo (cytoxan) I was in the hospital for 30 days. But that's not where I end my story....
GOD IS GOOD! I got off dialysis in Dec. Praise his name!!!!! I still take chemo but at last check my creatnine level was 1.2! I still have amenia pretty bad and I my lupus is still active although I am not in a flare. I have a new rheumi and he's pretty good.
Like many of you, I am unable to work because of the many symptoms that I have due to the lupus. Some days I want to get up and do so much but my body says NO,while my minds has a list of "To Do". My ankles, wrist, and elbows always hurt. I am soooo tired some time all I can do is lay here and try to pull myself up to get a bath. Before all of this I was active in my sorority, a praise dancer at church, a vlounteer mom, thriving wife and just Superwoman. But ya know this could have happened when I was still a single mom so I thank GOD for my husband and my supportive family. We have a needs met and GOD is a provider. But it is so dishearning that you work all your life and when it comes time for you to reap the benefits you have paid into, you get denied for EVERYTHING :evil: :roll: My husand's insurance is 80/20, so we have to pay the 20%. I was trying to get Medicare as a secondary but they say he makes too much money. I have applied for SSD, and it has been 5 months and they still have not made a decision. People also tell me that on your first try they usually deny 70% of the people. My lifestyle has totally changed but I wouldn't say so much for the worst. My husband is a jewel, my son is a charm, I still have the use of my limbs and still have my faith and I know someone else has it worse off and I wouldn't have to look that far to find them. It's just somedays though, it can get you down. That's when I get to praying.
Ok, enough from me. I am glad to join this family and I look forward to chating with you all. I pray GOD enrichly bless all of your lives as well as your families.
Hi, Monica - and welcome. I am so sorry for the loss of your child; that must have been so difficult for you. But I am glad that you are doing better healthwise.
Have your doctors discussed blood transfusions for your anemia? I've had to have them multiple times, and they make a huge difference in my energy levels. So if your anemia doesn't improve with treatment of your lupus, it might be something to discuss with your docs.
I am so glad you joined us, and look forward to talking with you more.
Thank you. Yes, I have had one blood transfusion since I have been out of the hospital. But I also take arenespt (?) shots once a week when it gets too low. if it's too low, they won't do my chemo so that's when I have to get the shots.
Welcome to the Forum! :D I'm really glad that you found us! :D
My condolences for the loss of your child, but remember that he is in Heaven and God is taking special care of him for you.
Please just remember that anytime you need advice, support, information or just to vent or chat, we're all here for you! :D
Keep well and God bless you! :)
Welcome to our family. I, too, am so sorry for the loss of your child. I often tell people, when asked about the loss of my child, that my daughter was a gift from God and we were chosen, by God, to be her earthly parents. And that, now, we have given her back to God and will cherish our brief time with her here on earth. I truly understand your sense of loss and my heart goes out to you.
Yes, you were lucky that your Lupus was diagnosed quickly. I am glad that you are starting to do better and hope that your treatments will continue to help you feel better. As you said, my disability was denied outright and also denied upon appeal. But there are some on this forum who were successful in their application. I truly hope that you will be one of the successful ones!
We are happy that you have joined our family and, I'm sure you know that we are here to help you in any way that we can. You are not alone!
I wish you much peace and many blessings
Thank you for your empathy. Yes, I know he is better off with God and like I said I found sooo much peace seeing him and he just had such a peaceful look, so all is well.
Welcome, Monica. I'm so sorry for your loss - how painful for you and your husband. You have such a wonderful attitude - I'm sure you'll manage your lupus well. I hope you'll find information and support here.