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Welcome to Grumpy Groupies!!! This group is open to every one. I hope that all my buddies will join and use it often. Sad or happy, NO discussion is taboo. I do ask that you use Trigger in the title when necessary. Hopefully we can have fun and also support those who are having a hard time. Muahs
For those of you not in the know, in Feb I had an "inncident" where I had a very abrupt change in vision and total loss of equilibrium. My vision was like having crossed your eyes and the residual pain that comes if you do it too long. The left eye has improved, but the right eye? Nope. So I walk around everyday with the right eye closed and the left one open. It means injuries from bumping into things. Has caused me to fall lots of times.
ER doc, hospital neuro, primary care and gen practitioner in the hospital and follow up with pc all said it is conversion disorder which is basically a form of dissociation excepts it manifests in physical form. I was discharged with my right eye exactly as it is now. Pdoc says it is NOT conversion disorder. Had to fight with pc to get referrals to neuro and opthamologist. Op says nothing wrong with eye but the nerves aren't communicating with the brain properly. Apparently my eye isn't tracking properly thus the distorted vision. He deferred to neuro. Neuro put me through MRA, MRV. All inconclusive. Blood work indicates 2 markers out of 13 for lyme disease but I've never been bitten by a tick in my life.
So on the 17th I am having a spinal tap done followed by an infectious disease doc and I have to see a neuro-opthamologist. Still no freaking answers and just test after test after test. It's been nearly 3 months like this. For a long while I was motivated to find answers. Then I hit a period of apathy. I just didn't care. And now? The depression is setting in. I can feel other things declining.. I'm scared and I wish they would just figure it out. Or at least tell me this is as good as it gets so I can prepare everyone and stop putting a happy face on and pretending it's all like a sprained finger or something. It's not. I'm tired of being half blind, of not being able to go from light to dark of having my computer turned up to 5x the size font I normally use. Tired of almost hitting my husband and kids when they approach me on my blind side.
I want to not feel horrible all of the time and tired of trying to remain positive. I can't do it anymore.
Sweet heart, I totally understand and I feel your pain. Although our health issues are different, we are both going through the same emotional roller coaster, frustrating, depression, not caring and then the circle starts all over again.
I know you have been going through this for quite a long time and Im so sorry that I havent been more supportive. Ive got a lot going on and just cant think straight. I hope your Dr.s can find an answer. Dont give up, just keep on trying to find out what is wrong. love to you. hugs
When all else fails, go Bipolar all over their azzes!!
I haven't really been supportive of you either. Sometimes it is all I can to get out of bed, especially lately. The really, really bad part of this is that my kids are coming for the whole summer and how things go will determine where they live this fall. I want them here. But at the same time, it requires me to slap on that happy face and I'm reaching the point where I am not sure I can do that.
Keep hanging in there too. Love you too. And lots of hugs.
Hi Melly, already wrote ya on FB, but in case you check in here first, just wanted to let you know I'm here for you. If you need someone to talk to just call. It's horrible the things God puts us through sometime, but I just try to remember that if it doesn't kill me first, it'll just make me a stronger person. And we BOTH WILL SURVIVE!!! You're a fighter and a wonderful person to boot. I'm really sorry that you're going through this. I know what it's like to have your vision all screwy. It's happened to me before, only not as bad as you. Take care and I'm thinking of you.
UPDATE: Last Thurs I had to really fight. The referral for the neuro opt hadn't been done because the original opt says all I need is glasses. That's not what it says on his own report. Armed up to see Lighthouse for the Blind thinking they may know some advocacy programs to help me fight through the insurance. Get there, lady gets background info from me. I give her the notes from the opt. She looks at me and says I qualify for everything because I am "legally blind." (Just to be clear because I've since looked it up, legally blind means your vision is 2/200. Mine is 1/400 in the right eye.) She sends me up the street to the State Agency for Blind Services because they pay for the programs otherwise I have to cough up at least $400. I fill out the applications, the woman reviews it, takes it to the back, and returns. I am NOT eligible because I am not blind in both eyes....or so the report says. Then it was off to the ins co and just so happens their corporate office is here in Tampa. The concierge rep gets the exact same runaround I've been getting three times. Finally he asks for a supv who tells him to call the opt and tell them that if they don't complete the referral, they will, and they will remove capitalization. He calls opt again. No help. End up faxing over notes to ins co from dr's. Next morning the opt calls with the referral.
The spinal tap sucked. No migraine. But tons of bad residual pain. They hit several nerves impacting my legs, hips and lower back. Haven't been able to rest it because ds1 was here the weekend.
In the meantime, ds1 has decided he wants to remain living with his dad because he's gotten an office in his art honor society. Mind you, unless he completes online classes this summer, he isn't going to advance to his jr yr and he is not going to be eligible for his NAHS due to his GPA. So I slapped on the "everything is just fine" mask all weekend.
The fact is: I cannot handle anymore. I'm crying over every little thing - even dripping oil on the stove while transferring food from the pan to the plate. It's that bad. I'm trying to hang in there until the 28th, 29th and 30th. pc dr on the 28th. No big deal. Neuro opt on the 29th where I know he'll do another eye exam and my left eye is going to be really bad in comparison to the last exam at the beg. of apr. And the 30th I see the infectious disease dr for follow up to the spinal tap.
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