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Can I get a break PLS!

Aug 02, 2011 - 6 comments










I had my OCT last Thursday, and I do have some inflammation going on. Where exactly I can't remember because the eye has many weird complex names and such. I won't get official results from dr until my appt at the end of Sept.-s-u-c-k-s for me :(

But my eye still hurts. It aches. It's sore. My vision gets blurrier (is that a word?) as the day goes on. After almost 2 months now the pain is still there-SERIOUSLY??!!  I finally broke down and called neuro nurse today. I can't take it anymore. Am I suppose to go like this until I'm seen in Sept? And who the heck is my dr anyway?! Sigh, I keep trying to stay positive but it's hard. Especially when you just don't feel well ALL of the time. I'm praying for a good dr- one at least as good as ol' Olga was. I pray that when my appt finally comes, I am listened to, and not brushed off, and not told the lets-wait-and-see line.

Most of all, I pray that the neuro nurse can get a dog-gone dr to call in a rx for this pain, or at least put me back on the prednisone, omg-it's relentless. I just want a break, just one.

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1719886 tn?1311614031
by patientnurse, Aug 02, 2011
In the midst of my breakdown I'm seriously thinking of buying that $49 ticket from Southwest and flying to Oakland and find Dr. Olga Goldberg!!!!! At least she understood what was going on with me and took me seriously!

I can't take the risk of getting arrested for stalking though, I would so lose my nursing license. LOSE-LOSE situation!

1475492 tn?1332884167
by Sidesteps, Aug 02, 2011

SOOOO - I'm hearing you!! You know you aren't alone, right? I am going on, ohhhh, 9 months of eye pain. It was really bad in the beginning. I was taking 600 mg of ibuprophen for the worst days. That was a lot then. Now, I am down to less pain, I have maybe 7 days a month of mild, in comparison, pain. Today is a bad day. Last night was a bad night. I feel like my right eye is displaced and doesn't quite belong to me, color vision is off, numb, heavy, blurry and it aches again. The scotoma in my left eye is present today. I don't have to take medication for it really much any more so it gets better but I still worry that I'll lose my vision.

They have never given me steroids. I do think I will ask to see if it will help on my next visit. I'm really needing some relief too. Thinking of you. I just wanted you to know I'm here. Take care of you. :)

1719886 tn?1311614031
by patientnurse, Aug 02, 2011
How do you bear it all? I'm simultaneously laughing and crying my head off after 2 months of dealing with this. The worst part is that I know that come Sept, the attending will once again recommend the evoked potential test just like he did last month (no one listened). I just know that I'm in for more testing, and I'm sooooo over testing. I do it because I want a dx.

I guess it's been a pretty emotional week around here, and it's only Tuesday! Most days I get through just fine, today is not one of them. I went to the pharmacy yesterday to pick up my Elavil (it's an antidepressant that neuro is using for my migraines). The guy at the pharmacy said "This medicine is for your depression," and handed it to me. I just smiled, because I really wanted to say "Depression is one of the things I don't have, I wish I had a dx of depression, at least I would be getting the right med!"

1475492 tn?1332884167
by Sidesteps, Aug 03, 2011
No joke!!!  

I am bearing it by trying to take one day at a time. Baby steps.Days like today, I've learned tomorrow might not be so bad. If I have one bad day, I know tomorrow might not be. It's how I get through many things in my life. :)

I AM worried, really deep inside, that it's not MS and that is forcing me to not become complacent so I stay diligent in finding out what's wrong. The way I'm going I probably will feel near normal in a year. lol ~ (I think it's permanent by now.)

Avatar universal
by susanjillian422, Aug 18, 2011
Longing for a break... I can relate. I'm sorry you are going through this. I know the thing I most want a break from is being asked..."aren't you better yet?" I tend to reply : define better? do you mean no pain in my hands, the unpredictable dizziness or the pain in my head? Maybe you mean the fatigue?  or the feeling like I am on fire sometimes.... and hate how my clothes rub agaist my skin. The intermittent factor is the hardest to explain. Yes... I do understand your point. You know I wish I didn't. Sometimes I wish I was the insensitive fool asking the question.

1719886 tn?1311614031
by patientnurse, Aug 20, 2011

You know the worst part of it all is that people just can't seem to wrap their heads around the type of pain and weird symptoms that we endure on a daily basis. They believe that if it were something truly wrong then the dr's would have "fixed it all by now". Yeah I hear ya, and I get those comments too..."You're still sick?". The worst is when you actually go out on a limb and try to explain to someone what you are going through, all the testing you've been through, etc, and at the end they say, "It's probably stress." Oh if I hear that 1 more time, I am really gonna scream!!! Stress doesn't cause me to lose my sight, it doesn' give me a +ANA, it doesn't make one side of my body numb.

I wish I would get a name to label what ever this is that has been plauging me. Maybe then the insensitive fools will stop looking at ME like I'm the crazy one. I've been in this body for almost 34yrs now, I think I have a right to say that I KNOW when something is not right!

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