So lost ...........

I feel so lost right now and like I have no one to talk to that understands............

I have been thinking about weight loss surgery for the past 3 yrs and have made my mind up that I was going to do that because I was sick of being over 350 pounds and sick of feeling like a failure as a mother and wife. I scheduled an appointment at a surgical weight loss clinic and met with that Dr on the 28th of March. I got started on a 6 month diet.
I was so excited to get started that on the 29th I restocked my kitchen and headed to my PCP to set up my first initial appointment and get my first weigh in. She said my b12 was low and wanted to start me back on injections (which is was low back in Oct 2015 when I seen her over having trouble breathing and was DX with double pneumonia) anywho I had no reaction to the b12 injections I took back in Oct.

So I got an injection on the 29th before I left her office but was unable to pick up my prescription til my husband got paid that Thursday so I started them Thursday and took one Friday. I felt sick to my stomach Wednesday and Thursday called my pharmacist and she said it was probably due to my level being so low and bringing it up fast and to take some kaopectate(sp?) which I did, somewhat felt better, brushed it off. Went in Friday for fasting blood work for my weight loss surgery stuff. Woke up in the middle of the night and my face swelling. Remind you later on that day its April 2nd Saturday and my eyes are swollen shut I feel like someone doused me in gasoline and threw a match. It only affected the skin around my eyes, my nose and all sides of my nose, my ears, back of the neck, one hand, one arm, elbow and my entire scalp. I went in that same day and was told that it was shingles. This was a different dr because mine wasnt in at the moment but I didnt care I just wanted to get seen. I get worried and want to see my own dr so I got back in April 5th which is a Tuesday. She said she believed it was shingles also and wanted me to see a ophthalmologist because it was so close to my eyes she gets me into one on April 7th which is a Thursday. The dr walks in and says wheres the shingles I said here on my face head and neck and he said thats not shingles thats lupus....you need to get tested. I rush home call my dr's office and tell them what he said and they told me to come in the next which is Friday April 8th 9:45am to have blood work done. I've never given so much blood before in my life 13 vials. I called daily not only because I'm worried but because I'm on no medication in desperate pain and just wanting help or some answers so I can get help. It was so bad a few times that I just didnt wanna live anymore. Anyways while calling daily I find out some of my lupus panel had come back and that wanted me to come in so on April 12th I went in and was told that both my DNA tests hadnt come back yet but that it looked like I had lupus and that I would need to see a specialist and he would discuss with me further about what needed done. Im confused ... Im lost that day I drive home thinking Im going to die and leave 4 small children all under the age of 9 behind with a dad who I know will fall apart if something like this happens. I get home and send my husband back to get the predisone(sp?) she prescribed 20mg 1pill 3x a day for 3 days, 1pill 2x a day for 3 days and 1pill 1x a day for 3 days. I hate to admit it but about day 3 or 4 I felt like a brand new person almost like they had made a mistake and that I wasnt sick anymore. That regimen lasted 9 days.... ended on the 20th .... needless to say I could feel beast waking up a few days prior to today so I didnt even make it 10 days because earlier today April 30th I went in and said I needed more meds .... I see a dermatologist on the 3rd which is this Tuesday and I see the rheumatologist on the 10th which is the next Tuesday.... Im on 10mg 1x a day.... since Im in the beginning of a flare.... I feel so defeated I dont understand why my body is turning on me my future seems so unclear now just with how I feel and the pain.... I was going to school to be a nurse and that dream seems so far and out of reach now :( I just wanted a better life for my children..........

Guess Im asking if you've had weight loss surgery send me a msg or write me on here or if youre working please let me know its possible to work and how youre doing it .... I just got my SRNA card and really wanted to use it but since I have the rashes on both hands now its extremely painful so I was going to wait til I seen the dermatologist and see if she could give me something else to use on it. Any information I would greatly appreciate or anyone that could read results lol because Im curious and cant figure out what Im looking at.... or maybe just to tell your story too so I dont feel so alone Sorry its so long just wanted to give some background see if anyone had went thru what Im going thru and have a buddy or something. Thanks!

Hang in there and be patient about the process of diagnosis. Try not to over think things and project yourself into the future.
Worrying just makes you feel worse.
Try to focus on getting through moment by moment.

As for the surgery I'd wait to see what's happening now. Surgery is rough on us.
I'm overweight and have been slowly losing weight for over a year now. It's slow go but I'm patient. Diet changes really help me since exercise is too hard on my arthritis. 50 pounds gone!

Watch out for "Dr. Google" you'll scare yourself silly.
Remember this....what's put out there is worse case scenario.

I've had lupus since 2011 and all I suffer from is joint pains, occasionally swelling, and photosensitivity. Anything worse is treated with predisone and it eases off quickly.

My dr tested my b12 levels and it was 192 and she said that was extremely low and that it needed to be raised. She said how low it was that I needed to be on the the b12 injections you take one shot a day for a wk then 1 shot once a wk for a month and 1 shot a month for 3 months and then have your levels checked again to see if they've been raised or if you need to continue 1 shot a month for another 3 months. I did this back in Oct of last yr got my levels started in the 200's and I got them raised to the 900's but wasn't able to go back to the dr til the end of march and she said it was lower now than it was last yr :(
So yes it was prescribed just shots that you can take at home. I was told that OTC supplements wouldn't help me because my level was so low. Has that happened to anyone else? Could it be lupus related? I asked my dr but she seems very overwhelmed and keeps mentioning that she's never dealt with a possible lupus patient before. I only got two shots in before the rash started and they told me to stop taking the shots just in case it was what caused it but I'm getting rash again. Seen the dermatologist today and she said she doesn't treat lupus and isn't for sure if it is or not and for me to keep the appt with the specialist on the 10th she made copies of all my blood work but flat out told me she didn't know what any of it meant.... so basically I drove 3 hrs out of my back and forth for no reason to find nothing out and still be lost and confused :(

Post Edited (mystical2016) : 5/3/2016 11:24:31 PM (GMT-6)

Yes the rheumy is that far away also. I live in a small town and where I travel too is a bigger city. Here you usually get sent there when they can't figure it out or you need more advance testing, crossing fingers that the rheumy will know whats going on and can help me.
Question if you don't care? When you first went to your rheumy did they re-do your blood work or use the blood work that your pcp performed? So nervous and just wondering what my first visit will look like....

My rheumatologist repeated my blood work and did additional blood work.

I have to drive an hour to my rheumatologist. I don't know if I could drive further than that, too much sun for me.