New here, pregnant, and falling apart :)

[Mrs.Crary]

Hi all. I'm Mrs. Crary. I was diagnosed with Sj?gren's when my 2nd was 9mo. old. I'm now expecting my 3rd and starting to have trouble. It still seems weird to me not being generally healthy. I've had symptoms of Sj?gren's since I was in kindergarten, so I never knew what normal was. I didn't know that my sinuses and eyes were dry, because they were as moist as they'd always been. Thinking I was normal,  I used homebirth midwives for my first two. I wound up transferring to hospital with both, neither for an emergency nor for anything which might repeat itself. I figured with my Sj?gren's under control I'd try again. It seemed that the only part of me that worked as it should is bearing children. Easy pregnancies and births both times. This time is proving different.

I was on celebrex and plaquenil for the Sj?gren's,  and armour for my thyroid. I had to drop the celebrex when I found I was expecting, but of course kept the other two. This last week I had a bad,  flare-up. I went to see my family doc to see if we needed to do something about it, or if I should just ride it out. She panicked. Ordered a battery of tests to try and figure out why I had shortness of breath, weakness and tremors in my hands. She cancelled my plans for a midwife, referred me to an OB, and ordered a chest x-ray! I tried to tell her over and over it was a bad flare and I'd experienced it before, but she wanted to keep ruling things out. I thought she'd listen better. I tried telling her that under my old midwives,  just a bolus of IV fluids and a good day's rest snapped me out of it, bit she kept fearing the worst. She also kept calling it R.A. instead of Sj?gren's,  which irked me greatly. She was a great doc for me when I was healthy, but it doesn't seem like she know enough about my condition now to treat me effectively. I don't want to have to find another doc, but I'm tired of not being trusted and listened to. Thanks for listening to all that. Anyone else been through this?How does one go about looking for a G.P. who really understands Sj?gren's?

[Jellyb]

Hi mrs.crary,
Welcome to the forum and I am so sorry about everthing you are dealing with right now.

I think you should try and find a rheumatologist to help you

[Mrs.Crary]

I have a rheumatologist, but he's a good 2-3 hours away. The local fellow is no good and booked 4 months out. I've phoned them, but they seem to take it lightly. Keep wanting to be conservative with my treatment as I'm so young & have a long way to go.

-Mrs.C

[KellyG999]

Oh, my! I am sorry you are struggling! It's nice to have you in our group. We will help you as much as we can and support you. If it helps, I don't necessarily think the doctor panicked, although it sure seemed that way to you. I think she is showing additional concern Considering you have a precious new life in you! You can't be too careful when youre expecting.

Take care, try to take slow deep breaths.

Kelly G

[Duchess]

Hello and welcome to the forum.

Congratulations on your new pregnancy. This is a very special time in the life of women. You must take care of yourself and the baby the best that you can.

I think that the doctor was correct to do the test she did. Being pregnant, these precautions must be taken. So many other ailments can mimic Sjorgren's.

Your rheumatologist is far away; is it possible for him/her to recommend another one closer. If not, it would be in your best interest to make the trip.

Your doctors can consult with each other.

Please keep us posted. We care!!!!


Duchess

[A66eyroad]

Welcome! Here's where you can vent, learn, laugh, and help others. You'll love it here!

Can your doc call your rheumy for a phone consult? The rheumy could guide the family doctor in treating you.

Congratulations on your Great Expectations!

Love,
A66ey

[Mrs.Crary]

We only have two rheumatologists in town. The first one I visited about 8 years ago. He didn't do any labs and diagnosed chronic fatigue. Said the patter of pain in my joints didn't sound autoimmune. I don't feel comfortable going back to him. With both of the locals it's pretty much impossible to get an appointment urgently. Ah well. I'll have to make the trek to see mine before the roads get bad. And I'm sure my doc will consult, it just unnerves me to see her puzzled.

I suppose I'm just getting a little tired of being poked and prodded for the same thing for 15a years.with the same results. The only poking that finally figured it out was when I saw a new doc who ordered a full autoimmune work-up which finally showed the elevated ANA and SS-B. Everything before and since has been negative, with the exception of my thyroid panel, which was not a surprise as most women in my fam have thyroid trouble. Guess I'm having trouble shifting my thinking in line with more allopathic practices when I'm used to more naturopathic care.

[cargillwitch]

Always trust YOUR feelings! I am a nurse and Doula and so often see mom's inner voices ignored. You know your body best. Remember that going to any professional  is to obtain their opinion. Just that ,THEIR opinion. Trust me there will be almost as many opinions as there are practitioners out there! Take the information sit with it and then make an informed  decision that sits well with your intuition.Talk with your midwives as well ( where are you? -Canada?) as they may have some suggestions as to other specialists who you could visit and consult.
on a lighter note have a blessed pregnancy and happy birthings! Looking back I am sure I have had sjogrens since my second pregnancy and had two pregnancies after , both home births with registered midwives.

[lolo1979]

Congratulations on your pregnancy!  I too just gave birth to my second son about 6 months ago, which is when I had my first bad flare and was officially diagnosed with sjogrens.  I did have some complications during my two pregnancies - mainly a LOT of itching.  We thought it was cholestasis of pregnancy and I was treated as such by a high risk OB-GYN.  We didn't catch on that it was an immune issue till pregnancy #2.  Anyhow, my recommendation would be to find a new doc that knows your condition better. I would especially try to find a high risk ob-gyn and be monitored throughout by her/him. 

Beyond that, I would NOT stress out over your sjogrens.  That is not helpful.  The one thing you CAN do is ensure you are being seen by the best, most competent docs that you can find in your area, and leave the rest to them and to God.  That means the best ob-gyn AND the best rheumatologist. And don't see ANY doc who makes you feel doom and gloom about having sjogrens and carrying a baby.

I'm like you - I never had trouble getting pregnant and I carried two healthy 8 lb boys to full term!  It is one of the few things working correctly for me too.  We are blessed for that.  Good luck, you will do great!

[Mrs.Crary]

Thank you all for your encouragement. It has already been very helpful just to find this group. I met with the midwife yesterday. She was cautious about working with me, but suggested that I consult with the OB as well and see if they'd be willing to do once a trimester consults and take over care if I truly risk out. I pray they'll be agreeable to it.

For whomever asked, I'm in Washington State, one of the most midwife friendly places in the country. My county's homebirth rate is more than double the national average. It's a very nice place to be if you like to keep birth simple. I was also a Doula before my health took a major turn. Best work in the world!

I was getting excited that this flare might be over yesterday morning because I could breathe easier and my pain was back to normal, but by lunch I was weak and trembling again, and by supper I was back in bed. Ah well. I just hope I'm well enough to go to work tomorrow. I'm in a small department of only 4have people and the only one who works Sundays. If I'm not in, I'll have to get one of the others to work overtime for me to get the necessary reports done and I do not like being a burden to others.

Well, time to get on with the day & see if my MIL can help with the girls.

-Mrs. Crary

[Jorja]

Congratulations, Mrs. Crary!

Hope you are feeling better soon.

Blesssings,
Jorja

[susanep]

Welcome, and congratulations on your little one. I do hope you have others help you however you need it. We are all here for each other.

Prayers for you
susanep 

[Mrs.Crary]

Well, it's time to tell my doc "I told you so!" My weakness got much worse yesterday so I went to the ER as my doc suggested. My BP was way up. The ER doc recognized me and immediately started IV fluids. She re-checked all my bloodwork and did another EKG just to be on the safe side, but everything came back normal and my HP came right back down with just the IV. This morning my extreme weakness is completely gone! I can't help but think if my doc had listened to me last Monday I would have been able to work most of this week instead of lying in bed too weak to sit up.
Grrrr.
- Mrs. Crary