I can't tell you how glad I am to have found this forum. I am 32 years old and was just diagnosed w/ Sjogrens. It all happened kind of fast. I had a miscarriage last August, and my OB did some bloodwork as a result. Everything came back normal except my ANA, which was 1:160. At the time, I was having no symptoms (aside from dry eyes, which I've had ever since I was in my early 20's). Went to my GP and he ran more tests and my ANA was 1:80 and RF was 6. All else was normal. Very shortly after that, I literally woke up one morning and my mouth was dry. Found out shortly after that that I was pregnant again. Decided to see a Rheum to discuss what could be going on and make sure it wouldn't impact my pregnancy. He ran more bloodwork but for some odd reason did not run the ANA again, or the RF. Did SSA and SSB which were normal. He said he didn't think it was an autoimmune disease and was probably just my body doing 'funny' things because of all the hormonal changes going on. Fast forward to June. I had my baby (my second) and desperately hoped my mouth would get better and things would go back to normal. They didn't. In fact, about 4.5 weeks postpartum, I noticed my feet were aching quite bad, and my hands felt stiff. It wasn't debilitating, but definitely uncomfortable. Went back to the Rheum and he said "well you probably have sjogrens". Was not reassuring at all. Told me there was nothing he could do to help me except give me evoxac (sp?) but I would have to stop breastfeeding before I can take that. He also put me on 10mg of prednisone a day for the next 30 days. I asked if we should run bloodwork to see what it's doing and he was reluctant and said he didn't think it'd be "too terribly helpful". So I pressed and told him my platelets had also gotten low during pregnancy - down to 101 at the lowest. So he finally agreed. Plus I just don't understand how he can tell whether its primary sjogrens or if I also am developing RA. He told me he doesn't think I have RA. But how does he know? So we are waiting for those results.
In the meantime, I am a total wreck. I can't eat, sleep, function. I am angry and scared and depressed. I feel like this has stolen such precious moments with my new baby already because I can't think about anything but this and what the future holds. I am desperate to help my condition, to stop it in its tracks at least, and am being told there's "nothing" that can be done. I am terrified that my health is going to spiral out of control, and I am already spiraling mentally. I am scared my husband is going to stop loving me. I'm scared my two young boys (I have another who is 2) will never remember that I was once vibrant, healthy and full of life. I'm scared that I will get so sick I can't function or work. I'm angry. I'm angry that I have taken very good care of myself all my life and this is what happens. I'm angry that while I should be on top of the world enjoying my new baby boy I am instead a complete depressed wreck wondering if I'll have the strength to go on. I'm jealous. I'm jealous of other mothers who are "normal" and don't have to face this kind of illness. I'm sad. I'm sad for my boys that they will have to have a sick mother all their life. I don't want to be sick. I do NOT WANT TO BE SICK. Especially not this young. I mean why could this at least have waited till I was older? Even just if I could've had 5 more years. And what really sucks is that I think I have a crappy rheumatologist and I have no idea how to find one who will be good. It's a crap shoot. literally. I feel so bad putting all this out there because I have a feeling you all have to do this every time a new member joins - try to be uplifting when you are probably not feeling great yourself. But I feel so alone and desperate and in a very dark place and I do not know how to help myself. Any words of encouragement would be so helpful.... :(
Lola
I'm not surprised you're angry and afraid - you have enough on your plate with two young sons, without having Sjogren's on top. My heart goes out to you.
However, you've done the best thing you possibly could, and that is to find Sjogren's World. We are all in this together: sometimes we are the ones who need to shout out to others (I have,many times), but sometimes we can try and support our new family members. And support is something you will find in abundance here.
I'm sure, in time, someone else who lives in your area will be along with suggestions of good doctors. I can't help, as I'm in the UK. We have other people of similar age to you, and I'm sure they will help you to come to terms with this.
For myself, I'm 54 now, and was diagnosed at 50, but have had symptoms from my teens. In fact, I lost all my teeth by 21, due to a very dry mouth. However, despite having three children in 3 years, and working all my life, I have survived. You will too - you will find ways of doing things with your kids, and this could just be a rough patch. In a few months, particularly when your hormones settle down, life might be much easier.
For now, I'll just say, welcome and God bless.
Keepin touch
Kathyx
Welcome to the forum Lolo. There are a lot of younger folks here. I hope that you can get in touch with them.
Some of us have posted what we are taking in our signatures to help others.
I hope you can move out of that dark space. If you can not do it on your own, please seek outside help.
It took me 6 yrs of running from specialist to specialist until I was diagnosed at a teaching/research hospital here in Iowa.
I recommend that over an individual specialist. they have specialists in every field there so your doctors are all under one "roof" and all have access immediately to your medical records.
Right not it sounds like you are being overwhelmed. A new baby is enough to get used too without this on your plate too. Anytime a person is diagnosed with a disease - they go through stages like the stages of grief. You are still in the acceptance/processing it all stage. You will get through this. It takes awhile for your mind to get wrapped around stuff.
I had one specialist tell me he was sure what I had was some type of cancer but I wasn't sick enough. When I got certain symptoms, I was to run to the emergency room. Well for 2-3 mos I was emotionally waiting for ceiling to drop in. Didn't do much of anything, slept and ate terribly, etc. My symptoms didn't change but I was very upset and scared to death. After those mos, i just decided I wasn't going to let any disease define me and put my life on hold. I guess I got to the acceptance phase.
I learned to take things one day, one test, one dr visit, etc at a time. Whatever you can handle. We've all been there and understand here. I really recommend a teaching/research hospital for a rheumy if you have one not too far away. Good Luck!
Hi lolo1979,
Let me also welcome you to the SJS World and family! Please do look around the board as there are scads of information available by using the search engine in the upper left hand side of the page. And as you've seen, there are oodles of wonderful members here too! :D
I too understand being afraid, and there is one thing that you'll notice, SJS is different for everyone and there is no script on how it will affect you. You'll see members that are sero positive and have no symptoms all the way to those who are completely sero negative and have a lot of medical problems because of SJS and everything in between. Some days I feel pretty good and tend to over do it, and then the next week I'm trying to rest and take care of myself because I will usually feel like the cat tried to bury me.
One thing I often pass to new members is to not forget to breath! Whew, those first couple of three years about scared the tar out of me, and I take it one day at a time (sometimes its one hour at a time when the flair gets wicked (I still work full time and it can get very interesting)).
Oh, and congratulations on the newest arrival!
Take care of yourself -
Patze
I, too, am so glad you found this forum. Let me extend a big welcome to you! ;)
Oh, my dear, my heart also goes out to you. The despair you must be feeling almost jumps out of your post. Being frightened is very normal. I think most all of us could say we were frightened or worried about our future health when first diagnosed. And sometimes it can be overwhelming.
And you just have a LOT going on in your life. You have a precious new baby boy, which is wonderful but a stressor and now a new health diagnosis. No wonder you are angry, scared and feel all of this is not fair!
Being a new mom again may be making everything in your body go "a little wacky" for lack of any good medical term. In a while things may get better all on their own.
In the meantime, if a doctor tells you there is nothing they can do, I would suggest to look for another one. I know that's hard to do when you're overwhelmed. But, there are ways to cope with this; there are meds that can help symptoms, and there is unending support and encouragement by coming here. And please let your GP know how overwhelmed you feel right now. You may need a short course of anti-anxiety med or consultation with a counselor for a short time to get you through this tough time.
Never hesitate to come here and vent. We all need to sometimes, even those who have dealt with this for years. So, no apologies, ok? ;)
Please take a breath, try to take a day at a time til you get those results back. Then keep us posted. There are others here who are about your age; hopefully they will respond soon.
Remember, you are not alone here. We've all been frightened and we understand.
Please take care of youself,
Melinda
lolo,
Welcome. I am turning 37 (tomorrow) and have had autoimmune issues for 10 years now (symptoms longer). Things seem to go haywire when hormones kick in so many times autoimmune issues show up after childbirth. I know not for everyone but for me it did. It made it difficult to take care of a baby and toddler because of the fatigue I had- and of course doctors kept telling me every new mom is tired and that I was fine! UGH!
I also had first rheumy tell me he could do nothing. Get someone else if yours won't try anything. I know that it's a busy time with 2 under the age of 2 but you can't take care of them until you are taken care of. You should have more blood tests for vit d, b12, thryoid, etc. too because those are also important in how you feel physically and emotionally. If you feel comfortable with sharing your general location, sometimes people can recommend a doctor.
It is normal to be in shock too. I always told myself, if only this could have happened when I retired...
I know it's hard but you can't think that way. I went through the feelings of jealousy and envy and anger with others who are parents and healthy and have energy. What I have come to realize is that my daughter wants ME, not another mom who is healthy but ME, her mom. Other moms may be able to push their kids on a swing for an hour but my daughter learned to swing on her own way before others-lol! Also, you will do special and important things with your boys that other moms don't do and they will be jealous of you. My daughter and I read together so much she is gifted in reading.
You will still be an awesome mom to your boys because YOU are their mom and who they want! I still feel the jealousy once in a while but look at my daughter and realize how lucky I am, you are lucky too and it's ok to be scared right now but try not to let it consume you too much.
I'm also scared I may not be able to work. I love my teaching job. But it's not the end of the world if I can't, we will find a way to make ends meet.
I'm also very angry! My mil is an alcoholic and is trashing her body daily with alcohol and she "seems healthier" than myself who eats organic and takes great care of myself. I used to be angry with God too but I've actually gotten over that and use my religion as strength now.
I'm just trying to let you know that I understand how you feel. It sucks but it's up to us to decide how we are going to live out the life we've been given. It's ok and normal to feel scared, angry, frustrated. But then you have to live. What helped me more than any of my doctors was my holistic/energy psychologist, she's a gem. Also helped me to try supplements/medicine to help with symptoms and even though I'm not like I used to be, I'm better than I thought I'd be!
I also suggest telling your husband your feelings, esp. about being scared that he won't love you. He may not understand all that you're going through but he's your partner and can't help what he doesn't know. Fortunately, you are here and don't apologize for your post, WE DO UNDERSTAND even when others don't.
You won't feel any better not sleeping and eating either so please try some.
Sorry to throw a lot at you but take care and I'm glad you're here :) Carie
Hi lolo1979 - welcome!
The others have given you some good information, I would add for you to read The Spoon Theory, http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/.
Your boys are too young to understand the Spoon Theory - but, as they get older maybe you could make a game out of it. Put XX number of plastic spoons into a cup or something and as you use them, take a spoon out. After time, the boys will understand that maybe Mommy can't take them to the park to run and jump, but . . . Mommy can sit in a chair with both her boys on her lap and read a book to them, or watch Sesame Street with them. Same for your husband . . . although, I doubt you want him to sit on your lap and watch Sesame Street! ;D
With time, you will learn (by trial and error) how much you can tackle in a day. There's many of us here who are still learning our boundaries (me included).
I know everything seems overwhelming to you right now - but, you will adapt and you'll do fine.
By the way, I'm sorry about your miscarriage last year, but congratulations on your newborn baby boy. :D As Carie said, you just had a baby, your hormones are still messed up - that could play a factor into all this too.
When putting everyone elses needs before yours (children and husband) - don't forget about YOU! Maybe . . . . you could declare a "me time" and have some time to yourself to just relax and do nothing.
Bucky
Welcome to this site and know that you are not alone. The first thing I am going to tell you is that when we have autoimmune disease we don't have to have blood work every time we turn around. The fact that you had the positive tests give your rheumy reason to start the treatment that he did. Keep pestering him for other blood work as time goes on but know that I have been ill since about 20, had 3 children, one miscarriage, and other numerous issues that would take forever to explain. I got diagnosed with sjogrens in 2003 at the age of 60 years old.
By the way, after being diagnosed and looking back my immunologist told me that all the health problems I had during my thrid pregnancy were from sjogrens. I had a terrible pregnancy and my MIL later told me that she didn't think I would live through the delivery. I knew I felt lousy but I didn't think it was that bad.
I also had to quit nursing after 1 month because my milk dried up. This, I now know, was due to the sjogrens. I had no one who understood and no doctor who even listened or cared. I ached to bad I could hardly stand it and I got no drugs.
I want to let you know that no matter how terrible you feel and how depressed you may get, things will get better. Go with the treatment for the time being. You will be amazed how much better the prednisone should make you feel. As time goes on be aggressive and ask about the drug Plaquenil. This is a drug that is now the first line drug to be used for sjogrens. It is also used along with prednisone much of the time. The prednisone is then tapered down when the doc thinks the plaquenil has kicked in. Plaquenil can take 2 months to 6 monoths to kick in. It is also used for rheumatoid arthritis.
If these drugs don't work there are others that can be used. Also, remember that you have been through a lot of stress having 2 children close together. Autoimmune diseases are negatively affected by stress. In the mean time, don't worry about the house. Keep your kids close by you and cherish the moment no matter how lousy you feel. Lay on the floor with the baby and have the 2 year old play around you. Use common sense and make life as simple as can be. Make no apologies to anyone for your inability to do what they want--ie, church, organizations, etc.
You first job is to take care of yourself so that you can recover your strength and take care of your life. If you are suffering from depression (be aware that prednisone can cause depression in some people) from meds and post partum hormones changes, don't be afraid to ask for antidepressants. Also be aware that sjogrens patients often suffer with depression much of the time. I am of the opinion that since all the secreting glands can be affected and dry up organs, why can't our brain chemicals be dried up. Just my thought.
You are lucky to live in this day and age so that you are at least diagnosed with the ANA. As time progresses your blood work may turn positive. Many times people have symptoms with negative blood work so the symptoms still need to be treated. If your blood work turns normal again and your doctor tells you that you are cured, find another doctor. Autoimmune patients blood converts back and forth between negative and positive all the time. My immunologist checks my immune bloodwork every 1 to 1/2 years. He said he treats the patient, not the blood work. It I have some eventful change then he will check my levels. I have myasthenia gravis and several other autoimmune diseases.
Be aware that the thyroid can be affected with autoimmune and especially after giving birth. Make sure that your OB/GYN checks your TSH, T3, T4 levels so you have a baseline reading to be compared to for the future.I truly hope that the informatioin you can find on this site will help you through these rough times. All sjoggies are tough people who get a lot done in their lives in spite of the adversity. Good luck and I will keep you in my prayers. Irish ;D
Thank you everyone for responding. It means so much to me, I can't tell you. I decided to set up a counseling appt which I have in about 45 minutes. I have no idea how she will be able to pull me out of this, but within her specialties she listed medical illnesses and even HIV. So I figure she has seen some stuff. I hope it helps because I really have been a total mess. What's amazing to me is how many of you say you had signs for years before but you never had a clue. I am in that same boat. I remember I'd have breathing problems in my mid 20's where I'd go for about a week that I just couldn't get a deep breath. Went to a pulmonologist and did all kinds of tests, all "fine". Had the dry eyes ever since mid 20's too. Had what I thought was cholestasis of pregnancy with my first, though my labs never reflected it (luckily they still treated it as such). Then after giving birth that first time, I'd have weird episodes after I worked out where i'd get hives. Just ... weird stuff that all makes sense now. I am planning on being aggressive with this. I am calling my rheum today and having him put me on plaquenil now (if he will). I feel like the earlier the better. why give my immune system a chance to go any more crazy and do any more damage than it already has?? Not that it's a guarantee but I'm willing to try anything that "might" slow the progression at least. Then I can take some time and find a new rheumatologist who doesn't have the "sorry, can't help you" attitude. I mean that may be true, but don't they know how detrimental that is to our mental well being to hear that? Certainly doesn't help. Thank you all for all the great suggestions and kind, reassuring words. I have been diligently reading through old posts on this site and already have learned so much. I hope you guys are ok with the new girl asking a ton of questions and posting all the time! I have a feeling I will be. And happy birthday Carie! While it totally sucks that we have this and I would never wish it on anyone, I feel some odd sense of comfort knowing i'm not the only "younger" person to be afflicted with this.. I guess not that it matters. It sucks at any age.
lolo - glad you are getting in to see a counselor today, just having someone to "talk" too, helps.
I would like to ask a favor of you. When you post, could you please break up your paragraphs into smaller ones with spaces between them. With all our eye problems a "block" of type is hard to read.
Thanks.
Bucky
Hi lolo1979.
I'll be 32 next month. I was diagnosed in 2009 a few months after I had my second son. I understand and have felt all of the emotions you have expressed. I know being diagnosed with an illness is a lot to absorb but you have to take a deep breath and remember that there is a spectrum within every illness. There are some on here who have experienced terrible manifestations of this disease, others who only have mild symptoms and others who fall somewhere in between. I pray your symptoms stay mild.
When I was first diagnosed, I kept waiting to be prescribed a pill that would cure me so I could resume my life. I gradually came to terms that there would be no cure and I'd have try my hardest to find ways to cope with what comes. It's not easy and it's not fair but on the positive side,-- though you may not be able to do all the things you used to, your boys are lucky to have you with them. Trust me when I say that you can be an effective parent, a wonderful mother, and still a great wife despite having this illness.
I was diagnosed when my oldest was almost 4 and my youngest 6 months old. I was so afraid to let them down. My husband helped when he could but work consumed most of his time. I had to learn my limits. On my good days (better known as the days I don't feel like passing out after standing for longer than 5 minutes from fatigue ;)) I'd take my boys out and go run errands.
On my bad days I'd sit on the clean floor with my boys while the older would play and the baby would roll and explore. This way, even on bad days, I was always interacting with them even while I still took care of myself.
I'd find easy/healthy meals to put together. I also learned the most important lesson that nothing good comes from pushing myself beyond exhaustion. Rest when you have to.
I can't give you the secret to accepting all of this. I can't say I've come to full acceptance myself but I want to welcome you to the group. I hope it will be as helpful to you as it has been to me. I think it's wonderful that you're trying counseling. Congratulations on your new baby.
Take care!
Lolo,
I'm glad to hear about your counseling session. Having a "sounding board" can be so helpful...and a person trained to help those of us with chronic illness can be a real blessing. ;)
You sound as if you're in a better place today, and ready to tackle this head-on. Good for you! As you can see from others' posts, you can still me a good Mom and wife and still be YOU even with Sjogren's. Sometimes it just might take a little adapting...try to look at it this way, we all need to adapt to SOMETHING. This is just "unknown territory" and that can be scary.
I hope your session was helpful and a beginning to help you along on your journey. Keep us posted. Oh, and a new girl with questions is fine by us, dear. I was one of the "new kids on the block" just last fall. :D If I can help pass along anything I've learned that can help someone else, I'm glad to do so. This forum and all the kind people here have meant so very much to me and my journey.
Blessings,
Melinda
Hello there,
I am 35 yo, with 4 little kids: 8.5, 7, 4 and almost 2. I have been feeling tired and off for 4 years. I know it is hard. I am sorry you are going though this.
Medications will make you feel better. I am nursing through Salagen. The Rheumy laughed when I asked if I could nurse--she said that was a first for her!!! I have nursed all of my children. I was low on milk for 3 and 4, which makes sense now, but DomPeridone helped the situation.
My house is kind of a wreck. It is clean but I can`t do what I used to. We still do stuff like go to the lake and outside to the swings. It is just harder. I have to nap a lot sometimes. I am feeling better with my meds. I`m not on Plaquenil but it`s mostly fatigue and my mouth and the fatigue IS getting better.
Try to stop eating processed grains (bread, baking etc) and sugar--it will make you feel worse.
Anyway, I am here if you ever want to chat.
Jackie
For those that have small children,, my heart goes out to you, I was (fortunate) that all of this started after the boys were grown and out of the house, I love when htey come home and love to see them leave again,, but when I look at the old pictures of all of us doing something,, and everyone smiling,, it sure takes me back to the good old days before Autoimmune became a daily word in my vocabulary, Do the best you can,, hug them always and tell them mom loves you, small things but they add up,,
Hi Lola,
I'm new here too and totally understand how you feel. I'm lucky that I was referred to a good Rheumatologist from the beginning. I'm still waiting on test results but was told on my first visit that he's 90% sure I have Sjogrens. Just trying to make sure I don't have Lupus with it.
I hope you have found some answers by now. That will make us feel a little better, just to know what is happening to us.
Good luck to you.
Lolo,
How are you doing in the last week or so? Just checking in on ya. ;) Please know you're in many of our thoughts.
Looking forward to hearing from you.
Take care,
Melinda