New to the Forum... Suddenly Anxious and Scared

[WannaBHappy]

Hello all! I have to admit that I was really reluctant to join this forum and participate in the posts, but I figure it can't hurt. I just turned 30 a few months ago but was first "diagnosed" with Sjogren's about 5 years ago. I have dealt with dry eyes even though most of the discomfort is currently masked by contacts. I do have dry mouth and am currently taking Plaquenil, Salagen, and Restasis drops twice a day. I never allowed my condition to bother me until recently when Venus Williams admitted that she was suffering from it. Then, like a freight train, the depression, anxiety, and fear all hit at once. Not to mention I was reading every article and blog about Sjogren's that I could find. I lost my appetite and immediately made appointments with all of my doctors to get a better understanding of where I fit in. For the past week, I have tried to do any and everything to change my thoughts and get back to feeling like my old self, but I'm still worried about my future. I have a loving boyfriend who wants to marry me and I'm so afraid he may be biting off more than he can chew with me and my issues. All I want is to be able to continue to travel, finish grad school, keep my good job, start a family, and be healthy and happy. But reading some of these posts about all the expensive drugs and eye drops, the pain, the seclusion, and not being able to leave the house has me scared to death! I know that I am not the only one going through this. Nor am I the youngest. I just need to unload this emotional load I have been carrying for the past few weeks so that I can focus on enjoying the health I do have and not allow stress to exacerbate my dry eye.

[Guest]

Hi, and welcome to the forums!

I'm rushing because my kids will be waking up from their naps any minute now, so don't mind any typos etc.

re: loving boyfriend who wants to marry you - if you think he's the kind of guy that will love you and stand by you no matter what, then if he says he wants to marry you, let him lol (well, assuming you want to marry him too)

Anyhow, on that topic... I started dating my hubby a few months before I turned 19 - later that year, I had an attack of optic neuritis... this was followed by an MRI of my brain, which showed lesions consistent with multiple sclerosis. I was told that with an MRI like that, plus the optic neuritis attack, I had an 80-90% chance of being diagnosed with MS later in life. Like you maybe, I felt like who on earth would want me with a prognosis like THAT? Autoimmune diseases can be a minor inconvenience if you're lucky, destroy everything if you're unlucky, or fall somewhere in between... I point blank asked him if he was ok with that... he said he was, and based on everything I saw of how he treated people in life, his views on life in general, his values etc., I took him at his word.

Now it's almost 18 years later and he has a wife --->>>ME<<--- who wears hideous goggles all the time in the house and all the other crazy dry eye stuff, and still has the blasted MS curse hanging over her head etc. ... he's never flinched even once. All I can say is that I've got a keeper

If you figure you do too, then keep him... be happy... do NOT think about all of the what if's in your future... if you can enjoy things in your life now, then do it... seize the day... you can't afford to waste any of it, especially since we don't know how we'll be 30 years from now.

As for the rest of it, the possible expenses of it all, wanting to travel etc... just budget for it all, plan for the worst and hope for the best (when we built our house several years ago, we built a bungalow because I figured if I ended up worst case scenario in a wheelchair from MS some day, I'd be even more upset if I had to move because we lived in a 2-story... silly maybe, but the bungalow made me feel better.. knowing it would be good no matter what happened to me... embarrassing to admit that I even planned for THAT, but well, that's me... and it will prob. never happen... but still, feel better being prepared...)

Anyhow, hopefully unloading all your worries here will help...everyone needs to unload it all eventually I couldn't deal with it for long unless I put those worries away in a mental box somewhere and do my best to NOT open it up again!

[tearless2]

Saag that is such a wonderful story. Your husband sounds great. I think he's also lucky to have such a smart, empathetic wife with a great attitude -- living in the moment. I too am trying to live in the moment and not think about where I'm going to be in 30 years. I keep hoping that technology will save me. Scleral lenses keep getting better and better. Drug companies are researching dry eye like crazy due to the monetary success of restasis.

WannaB I think a lot of people are living with something terrible. My friend (also 30) was trying to have a baby and just got diagnosed with endometriosis. She gets horrible pain and can't work for a week once a month. She may not be able to have children. My other friend was diagnosed with hairy cell leukemia. Another friend has severe rheumatoid arthritis and gets blood transfusions for it. These are just the people I know who have something. Who knows what other things the people around us have?

I just met a woman in my mommy group with one 5year old and a set of 2 year old twins whose husband died unexpectedly last year. I do not know the cause. Nobody knows what the future will bring -- perhaps there will be future drugs that make people living with sjogren's practically asymptomatic.

I am hoping if I take good care of myself with good diet, vitamins, and exercise, and most importantly a good mental attitude i will be able to live a somewhat normal life. Of course, I say that as a woman who just ate a turkey sandwich after starting her gluten free diet....today. Tomorrow I'll do better

[WannaBHappy]

Thanks SAAG and tearless2 for your kind words. My rollercoaster of emotions hasn't ended yet. I have talked to many of my family and friends... and God! And I know I will be ok. I guess it's the potential bad days and disease progression that scare me the most. I just woke up one morning and decided that my routine was not sustainable for the long term and completely lost it. Plus, my eye doctor told me I had dry spots on my right eye and that my brand of contact lenses has been discontinued and replaced with something else. All of these things sent me into a tailspin. What if I can't wear the new contact lenses because of sensitivity to the new materials, and I'm forced to wear glasses that seem to make my dry eyes worse? What if I need eye drops every 30 minutes? What if the discomfort is so bad, I can't tolerate work? What if I get hit by a bus tomorrow morning on my way to work? Silly to stress myself out like this, I know.

Regarding mt boyfriend, he is my best friend and number one supporter. I'm afraid that with all of my worries and anxieties, I might actually scare him off. He reassures me daily that I will be ok and that we will get through it together. I know he is the one for me and I can't wait to spend the rest of my life with him. I just want it to be a great life!

Thanks again for the taking the time to reach out to me!!

[adienich]

I guess you already know what you need to do - just try to trust that things will work out somehow no matter what. It's true what tearless2 said that a lot of people have problems, health or otherwise, and it's often more common than what one may assume. And nevertheless, people manage to go on. It often amazes me how people survive but they do.

The best advice I can give you is to stop reading stuff on the internet about possible worst case scenarios. This is something that struck me as familiar even though my situation hasn't been entirely similar in that I was never diagnosed with anything comparable to Sjögren's. I have, however, had my share of health problems and health scares and searching the internet for information... but of course this just contributes to anxiety, in most cases it doesn't really help. If there's no indication that your situation would be as bad as in a worst case scenario, why continue being afraid of it? (When my health problems weren't resolved by several tests and doctor visits, I was only able to let go of the fear by taking the leap for the life change I'd been looking forward to. I still have some health problems but I try to ignore them because I've got too much else to do.) If there's anything in your life that you have mixed feelings about... maybe you can take time to think about that and how it might contribute to your sudden anxiety.

If you've been able to see your doctors, hopefully they've been able to give you some information, that is a good thing in that you are probably better aware of your situation. The best you can do now is to just accept that this is what you've got and go on. Which is not easy, of course, I know. But I wish you strength.

[canndym]

Hi WannaBHappy,
I think what you are feeling is completely normal! I think many people would feel scared and anxious when dealing with a chronic health problem. I know I did and when I was anxious it made me feel even worse about myself thinking there must be something wrong with me to be feeling anxious about this. I was recommended a book called "when panic attacks" by David Burns. It changed my life by helping me change the way I was viewing my life and my thought patterns. Now at least can recognised if I am starting to become anxious and deal with my worries in a healthy constructive way. I still have my ups and downs September was a horrible month after several months of RCE I had hit bottom. Now I have picked myself back up and I am feeling much better even though my eyes have not really improved much i still feel better about them and more confident taht I will be able to manage them.
I totally agree that researching on the internet can make you way more stressed out! I have no diagnosis yet and before found myself spending hours trying to figure out wat I could have. I no longer allow myself to do that. I have come to the realization that I may never know and have to be okay with that. I am still seeing specialists to try see what my illness could be and will research specific questions I have but limit my time. I am trying to focus on finding things that help me manage my current condition not worry about ones that may or may not come.
As for wondering how you would manage putting in drops every 30 mins?? If you had to you would. Just amazing to me how people adapt. A year ago if you told me I would be doing what i am now I would have said no way! Now I am putting in drops every 30 mins and can put is drops anywhere I am a pro now. And for work you learn to adapt and get tools to help I bought several types of tinted lenses to wear for different jobs at work and I have to change them but it has allowed me to keep working. I am a pharmacist at our local hospital and every day I am reminded that no matter how bad my situation is there is always some one way worse. I thank God every day for that reminder it has given me perspective and reminded me to count my blessings not my troubles.
I have found being able to meet others like myself on this site very helpful and although not all the stories are of successes its a place we can get the support we need.