I've had enough!!!! So now what?

A person can only take so much... I often jokingly tell my husband that if I was an animal I would have already been put down. I laugh, but I am serious. The bad part about being a human and having a problem is you know you have a problem and you know there isn't a treatment. The good thing about an animal is that they may know they have a problem, but they are quick to adjust and not stress about it day in and day out.

 My corgi mix Tito has lost the use of his back legs entirely. The muscle has completely deteriorated and he drags his self around everywhere. He gets happy and excited and sometimes wants to play and he does so by dragging himself or hopping around. It's as if nothing were wrong with him.

I, however, can't seem to get myself out of this pity-party funk that I've been in since September of 2013. I came pretty close, but for some reason having a rare disorder wasn't enough for my body to take on, it now wants to be dizzy for 10% of my day and leave me in a state of fear that it's going to get worse. This has been going on since October 2014. The doctors seem to think it's BPPV, but I am not sure anymore. I am just so tired. I am physically and mentally tired. I don't believe in suicide.. it is not an option to me and I've pushed that out of my head completely. I am not in a depressed state or an anxious state... I do not need medication to make me feel happy.... I am happy. I am happy that I am alive and have a wonderful husband and son. I have a good life from an exterior view point, but on the inside I am at war with myself.

So I've had enough...., but what does that mean for myself.... what do I do now? In my heart I long to travel.... I want it so bad I can taste it. It's like a magnet drawing me closer and closer, but I am stuck. Do I sit around waiting to get better. Do I stay perched on my couch biting my nails worried that I am going to get dizzy again or stress about how I don't see movement properly and am so different from every body I know. Do I face the fact that this is now me and just set it aside and start living my life with the messed up vision and dizziness and just pray that somewhere along the way the researchers find a treatment or I miraculously get better on my own? I want so badly to do the latter, but I just don't know. How does an animal do this? Tito obviously doesn't think his life is over. He's still just as happy as ever. When he's in his dog wheel chair he wags his tail and rolls around everywhere. It's his Band-Aid. I need a Band-Aid so desperately. If I just felt for one second that I had someone on my side who wanted to try and help me get better.... well that would be a Band-Aid... unfortunately I don't have this. My doctors still have yet to look into the condition. I am but a number in a long line of patients. I feel so separated from the world, so different. I long to fit in and be normal... I don't want to stand out or be different.....But I am ..... that is me and I've had enough! So now what?

It's been a while

It's been quite some time since I've updated this blog. I would like to posting that I experienced a true miracle and all of my symptoms disappeared, but unfortunately that isn't the case.

I started experiencing a sudden onset of a new type of dizziness (not the typical driving kind) in October 2014. The dizziness would come and go for no apparent reason. I noticed it more at night after a shower. I have been trying to trace it down to what may be causing it, but I can't figure it out. I thought maybe hormonal because they seem worse around the time of my period which is usually when the migraines start flaring up as well, but then it started to be constant. I have noticed that my eyes actually move or throb along with  my pulse (heart beat) causing a slight nystagmus. I notice this more while laying on my side in bed. The doctor thinks this could be something vascular and is sending me to a new neurologist (since my insurance has changed and my last neuro was no help).
I also notice the pulsating actually makes my head move as well. Some days the dizziness happens hen I am still or after being in the car.... it's just strange and I can't figure it out.

I am torn between - is this from my migraines, my neck issues or something like BPPV. I haven't experienced true spinning vertigo since 2006 and I don't even know if someone with Bilateral Vestibulopathy can experience true vertigo... so maybe it's the crystals in my ears and they are out of whack. I don't know! Either way, this whole dizziness stuff.... I am done with it.

I woke up this morning to my 5 year old whispering something to me from the other side of the bed. I turned over to look at him and have been off all morning. Usually I feel dizzy more toward the evening, so I m usually able to get him off to school without the dizziness, only dealing with the normal visual crap... so this has been a rough morning for me.

My doctor set me up to see another vestibular rehab specialist, this time it's a different one. I am not sure what to expect because the office looks like a hole in the wall, where as my last neurotologists office was state of the art, but the doctor really didn't use any of his nifty tools to help me. He was just pompous! Anyways, my appointment was set for Friday, but I called them first thing this morning to let them know I am in a bad state today and they were able to fill a cancellation spot for me, so I see them at 5pm today. I am grateful this place is literally down the road from me because I wouldn't be able to make it.

I don't know what to do anymore. I am on the verapamil which is for the migraines and most doctors use it for dizziness as well.... Why it wouldn't help me, I have no idea. I can't really increase the medication because my normal blood pressure is already low at 90/60. I wish I could visit a top specialty place in Chicago, but there is no way I can get on a plane or stand being in a car for that drive! I just feel stuck! I should be working a full time job like most people my age. I should be able to take long trips to MI to see my relatives get married or attend family gatherings. This is what my life has slowly evolved into and I have no idea why. Why do most people with Visual Snow seem to have it fairly easy with no real progression in symptoms and they are able to get on with life despite the visual stuff? What is so different about me? I wish there was something they could hook me up to and tell me exactly what is happening and how to fix it.... is there such a thing?? I am tired of hearing "I am sorry you are feeling so bad", "Let me know if I can help"... I just want to be better!!!! I want out of this hell that is my reality...... I just want out.....