Friday, January 15, 2010
No, that's not quite an accurate description. More like drifting INTO a NEW normal. January is never one of our busy months. We spend a vast majority of January handling the day to day business of work, school, and weather. This is a good thing for me right now. Remember how I mentioned that I might just turn some of the reasons why I had been a less than diligent blogger into a post? Well this post would be the first installment! As I've mentioned in past posts I've been having a tough time of late with vertigo. Not just your average dizziness that goes away after a moments rest but days upon days of earth spinning, vomit inducing whirling punctuated with periods of lesser dizziness. Once one of these sessions ends, I'm left feeling like I'm having the worst hangover imaginable. During the odd day, here or there, when the ground stayed put under my feet I was hard pressed to just accomplish the minimum Mothering duties let alone the work obligations! The slightest rolling motion on the TV screen or computer monitor could set it off in a nanosecond so I was off-line a lot in the past month! As I also mentioned, this resulted in my being put on the escalator of specialists visits to pin down once and for all what was the exact diagnosis and treatment. It's at this point that I need to back up in time and explain the "exact diagnosis" part of that sentence! Our family has a definite problem with our left ears!! Clearly some genetic link from my Dad's side of the gene pool. By the time we started to notice the problem, he was old enough that they just lumped it into the "permanent hearing loss due to nerve damage" category. My brother, Uncle Peter, is a typical man who has just embraced the fact that he too must have the same condition and has never pursued any medical opinions. Auntie Peggy used to hold the award for the most unique diagnosis and treatment...until now. At only 14 she was diagnosed with Otosclerosis. Cool term isn't it? Bottom line, the three little bones in her ear were calcifying together into a big rock so they did a Stapedectomy. Another impressive word...which means they surgically removed the defective bones and replaced it with a vibrating, Teflon implant. Except for the need to avoid diving into water or steep, sudden drops in altitude, she has been restored to the normal hearing world. When I was in college I started to notice the hearing in my left ear was not as good as my right. Not unlike Peter's reasoning process, I assumed it was Otosclerosis like Peggy and that with one straight forward operation I too would be 'back to normal'. Unlike Peter, I went to the specialist to confirm this assumption and walked out emotionally devastated after being told that I was now in the "permanent hearing loss due to nerve damage" category. Hearing aids are pretty much useless when the loss is due to nerve damage so I continued on in life. Then, shortly after I finished Dental School, I began experiencing what the medical world calls Tinnitus. Basically, it is NEVER quiet in my left ear!! I always hear loud ringing and hissing sounds and it is very disconcerting when it first begins. So off to yet another specialist! This time I decide to get a "once and for all" diagnosis and treatment so I went to the 'big guy downtown' who LITERALLY wrote the book....the textbook medical students use when studying the ear and hearing. Lots of tests later, "permanent hearing loss due to nerve damage" stamped on the diagnosis sheet and I'm back home resigning myself to a life of saying, "Pardon me"! Fast forward ten years. Sitting in the back of a darkened movie theater with my daughters and husband, viewing the much anticipated new episode of the Pirates of the Caribbean, sitting perfectly still...the world starts to spin. At first I tried to swallow hard and force myself to focus my eyes forward but it just doesn't work. Thinking I'm about to faint or something worse I bolt from the theater whispering as I pass Patrick, "I need to go to the emergency room NOW!" After treating me with IV's filled with all sorts of drugs, I was well enough to be sent of to see specialist #3....this time to rule out any brain tumors or Neuromas...another great word, right? Lots more tests later and this time I have a 'new' diagnosis...maybe. Compressed Loop Syndrome!!! Simplest way to describe what they 'thought' was happening goes like this; a blood vessel in my brain which runs alongside the nerves for the ear had grown a tangled mass of microfingers. When ever these microfingers got inflammed they would put pressure on my nerves resulting in the vertigo. Great! Just keep those babies calm and I'm all good. Sleep, diet, stress and a bunch of other things I don't manage well were all now to be strictly managed...hah! The past three years were composed of many little tiny dizzy incidents which I blamed on my lack of control over some one of the factors resulting in inflamed Compressed Loop Syndrome. Simple, I'd lay down for a few minutes, calm myself, then be right back up into life. At one of my regularly scheduled physicals, my general did briefly discuss this thing called Meniere's Disease but I blew it off because I had Compressed Loop Syndrome AND I had it all under control. Now, all the while, the hearing in my left ear has deteriorated to near nothing! Then all of a sudden, this fall, I could not 'shake off' the dizzy spells with a simple rest. I tried the stress angle (because it was a very obvious factor in my life!!!) but neither physical nor pharmaceutical measures worked to stop the dizzies. It kept intensifying and intensifying until I was now regularly experiencing hoursss long vertigo attacks accompanied by nausea. More tests, more specialists, more visits to the medical library only to finally conclude that I have a CLASSIC presentation of Meniere's Disease. I love my general. He has been dead on so many times in our several decades long relationship that I will be crushed when it is time for him to retire!! Meanwhile, specialist #4 has been a great guy too. He has been the only one to take any real time to listen to me and especially to listen to my concerns about parenting and working while experiencing this condition. He has been open to working with herbals as well as pharmaceuticals but the only problem is....Meniere's is NOT within the scope of his practice and should I continue in my 'classic' presentation I will eventually need to move on to specialist #5 whom he has recommended, sigh, sigh....I LIKE #4 A LOT...sigh. So, for those of you who said you had never heard of Meniere's Disease, here's specialist #4's great real world explanation; For whatever reason, my left ear has decided to commit suicide. The 64,000 question would be why and then Meniere's would no longer be a problem but in the meantime we don't know why it's dying. Since it's dying, the right ear needs to pick up the slack. Not only does it need to pick up the hearing part but it also needs to pick up those jobs related to balance that the two ears are supposed to do as a team. When I'm having my worst of the worst vertigo attacks are when the left ear is dying faster than the right ear can keep up!! I will have periods of time, weeks maybe even years, when the right ear will keep up and I'll only have the 'little dizzies' (as Julia now calls them) but when it cannot I will have the massive vertigo with nausea. Sometimes, if the right ear just continues to lag behind they have several surgical options to try and 'hurry the process along' at which point I'd then have to go to #5. Good news/bad news....I now know it's progressive and there are alleviating treatments but NO CURES. Most importantly, to a control freak like myself, I now know that if I just sit back and ride out the process it will eventually come to an end....once the left ear is completely functionless and the right ear is in full command.Bad news; I only have 25-30% of the hearing left in my bad ear. Good news; I've survived 70-75% of my Meniere's Disease. No knowing how much longer until this process plays out but at least I do know this will not be how I live the rest of my life. So, when I'm quiet here in blogland it will most likely due to Meniere's.....or that tweener who lives with me.... One of the things I've not been able to do during all of this is sew. Sad because it is one of my best de-stressing techniques but the flashing of the needle as it rose and fell would set off a dizzy spell. More sad is the way the eBay market for custom boutique children's clothes has died. I'm hoping it's just the economy and that things will pick-up again because not only does it help us provide Mari's birth family with food delivery but I have fun thinking up new designs! My right ear is keeping up this week so I snuck into the salt mine to give it a try...... Osh Gosh size 5 overall jumper which I 'cutified' with pink pirate print and polka dots! Put some heart appliques on the back to help target the Valentine's Day holiday! Now to see if I have the endurance to get it up on eBay by this evening. Quick pics from our Thursday Family Night with the cousins.... Andrew avoiding homework by 'helping' Julia trace horses from a new activity book she had gotten. We do a TRUE Family Night by sitting down together for dinner...the adults sit at the island so we can all get 'elbow room'. It's so funny to listen in on them sometimes! They still talk about things from YEARS ago as if they were just yesterday. We had Chicken Parmesan with spaghetti last night and Julia COULD NOT WAIT to try out her new 'spaghetti fork'! She's pushing a button on the end that 'starts' the battery operated fork spinning....what will someone think of next?!?!?
Posted by Spudsnsalsa at 11:27 AM