Lupus Forum - Newbie Looking For Advice From Someone That Understands!

Hi everybody, im so happy I found you and it couldnt come at a better time. I have been feeling very scared and hopeless latley with all thats going on with my health and its hard for people to understand me, which I can understand. . Im sorry if this gets to long but I really need to vent. First let me start by saying that I am 24 yrs old and mother to a beautiful 9 mth old boy. When I was 14 after 3 years of watching my mother go from Dr. To Dr. With a list of symptoms always to be told that it was in her end and nothing was wrong with her I too thought that maybe she was faking it, I used to get so mad when she would promise to take me somewhere only to end up crying in bed that she didnt feel good, that she was going to die, and that nobody beived her nor did they care. Then the day came that she ended up in the hospital with shortness of breath the drs coulndt figure out why she was having such a hard time breathing so they decided to perform an open lung biopsy. My mom so so scared she said she had a feeling that something was going to happen but we told her she was overreating and she would be fine to make a long story short she never made it out of the operating room - she passed away during this simple procedur. It was the worst day of my life and I still live with the guilt of not beliveing her and secretly resenting her for being sick all the time. I learned that we must trust our bodies even if the tests are coming back normal and every one around us thinks we are just hypercondriacs because ultimitly we now better. Like my mom, she would always make comments that she thought she had some sort of autoimmune disease and that stress made her sick. After having an autopsy performed it was determined that she died as a result from her lungs honeycombing due to sclerederma. She was right all along, she knew something wasnt right, that her body was failing. Jump to today, about 4 weeks after my son was born I started feeling sick my main problems were my bones wouldhurt real bad it almost felt like some one was hitting them with a hammer. My muscles (mainly in my thighs and upper arms) hurt real bad and my skin and hair would hurt to touch. I overall just felt like something wasnt right I felt sick all day and it was extra hard on me because my son would only sleep 2 hrs at a time. My husband worked 15 hrs a day and I have no family so there for I had no help. It was a very difficult time for me. I went to the Dr. Who with my family history decided to test my ana he called a couple of days later to tell me that it was positive and that I needed to see a rhematologistbut not to be to concernd that could be caused by my pregnacy. The rhemotolgist who by they way looked and acted younger then me said that I didnt have enough symptoms to diagnoise me with anything and said that he was 99% sure that it was a result of me having the baby and told me to come back in 6 mths to be retested. I figured this was good news and that all this would just go away. We were in the process of relocating to tennesse (from florida) when I went back to the dr to be rechecked still having symptoms with new ones as well,( my eyes felt like sandpaper and I had just been to the dentist to find that I had 17 cavaties!!) he ordered more labs but told me that my symptoms were probable a result of caring for my child. He called me 2 days before I left for tennesse to tell me that my ana had gone from 1:80 to 1:640 and that I tested positive for sjogrens syndrome and neede follow up care as soon as I arrived in tennesse. I immediatly went to the grief I felt when my mother died and how groing up with out her drasticly altered my well being. I took this as a death sentence I picturd my son learing how to ride a bike with me not around to see it happen. I thought how my husband would tell him about what kind of person I was and how much I loved him. I cried and cried and cried. When I got here 3 months ago I got hooked up with an amazing rhemy at vanderbilt hospital and I feel like I am in good hands with him he told me that he suspects that I could have lupus but only time will tell. He gave me plaqunil in the mean time for the sjogrens it took me 2 months to finally get enough nerve to take for fear of the side effect and the fact that in some crazy way thought that maybe if I eat well and take vitamins this will all just go away. My husband finaaly convinced me to take it since its obvios the other things arent working -at all. Ive been on the medicine for a couple of weeks and my appt. With the Dr. Is on tues. But im wondering if anybody has experienced the same symptoms that I have. Every month at the same time they start it happens 1 week before my period and the week that I actually have my period. So its 2 weeks out of the month that it feel sick and it hits me like a train, all the sudden after feeling well I start to get dizzy and so fatiged I sometimes have to beg my body to move my whole body achs and I get this feeling on my skin like its been rubbing together (its hurts to touch) also my hair hurts to touch but only on one side and my ear on the same side burns on the inside I get terrible headachs and a feeling like something is stuck in my throat- it drives me nuts. Also any kind of loud noises startles my brain it feels like it jerks and I get twitches in my fingers and what feels like my organs (very strange feeling) im wondering if maybe my nerves are being affected? This mornig I attempted to exercise I was on my 5th squat when my legs just gave out it was so scary since that never happened before then this afternoon me and my husband were shopping when all the sudden I got so dizzy it was hard for me to but one foot in front of the other we had to leave the store my husband wanted to take me to the hospital but I told him no once I got home I went to lay down I felt like I was choking. It felt like something was just stuck in my throat and I was so nause and dizzy it felt like I had spent the day drinking and was feeling the aftereffects the room just wouldnt stop spining I finally feel asleep and felt a little better when I woke up. I wonder if what happend when I was working out had anything to do with it. Im just so sick and tired of feeling this way I feel like a burden to my husband and sometimes I feel angry that he questions me like "how can you feel so sick, your were fine yesterday" and I feel like maybe my son would be better off without me instead of having to go through the ups and downs. I remember how I felt towards my mom and it would kill me if he felt the same. Please. Any advice or support would be be really helpful. Once again im sorry this is sooo long I do feel better getting this out. Thanks for listening :)