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Saturday, October 22, 2016

Life's curve balls

Been awhile since I updated this it seems like. Things have honestly been so busy I haven't had time. My weight loss was somewhat on pause (didn't go either direction really with it for a bit but didn't have time to focus on actively losing either) Sept held my birthday which I spent at the hospital but this was a good thing. It wasn't for health reasons but instead was for the birth of my second grandchild. I really enjoyed my time spent there with my oldest. We were both exhausted but enjoyed each others company. It was sadly the last time I saw my dr because she was moved to another clinic. (not her choice) She's made such a difference for me. Shortly before all this I'd had an MRI because my medication wasn't working to alleviate a head tremor that had developed and I had some worsening symptoms and they wanted to rule out other things to determine if it were Parkinson's. Well it didn't quite work that way. As it turns out they found I have Empty Sella Syndrome which shows up as though the space where the pituitary gland is is empty but it is actually just flattened and the space is filled with cerebral spinal fluid. This is generally not symptomatic enough to be a problem but can mess with your hormone levels which seems to be the case with me. They also found cerebellar tonsillar ectopia aka Chiari malformation which means there is extra brain/skull is too small to accomodate or that that section of brain is out of place. Some of the brain can be pushing out through the base of the skull this puts pressure on the cerebellar tonsils which can cut off flow of cerebral fluid causing problems. There are many related problems that they have to test for that goes with it such as syringamella (sp?) basically a space in the spinal cord. Hydrocephalous,  POTS, etc. I am currently waiting on a referall to see a neurologist to find out more. there are a lot of suggested restrictions on activity with a person with this condition. It is not rare (the empty sella one is but chiari is not) it is still being learned about and in some people with a very pronounced chiari there can be less symptoms than someone with a less pronounced one. they will likely need to run another MRI to check CSF flow and possibly my spine. There is a lot I'm still learning about this I actually found out on my birthday. They had started to prescribe medication for parkinson's to see if it worked for the tremor but called as soon as they looked further into the results of my MRI and told me DO NOT take it. that they believe this may very likely be the cause of the tremor (as well as other problems) My symptoms have been worsening though I don't think a lot of people even close to me realize how bad.  My vision has been affected which is frustrating for me. I had to have prisms put in my glasses on one side but I've lost depth perception. I have always been affected by flourescent lighting but that has increased. I get super dizzy in bigger stores that use it more. I can't crouch down to look at something on a bottom shelf and stand back up without holding on to something or I'll black out and collapse. I can't turn too quickly etc. All likely related. There is a condition that is common with it that basically due to the compression etc that your body's systems that normally for people run automatically, heart rate, body temperature, digestion etc...does not work properly. This seems to be the case with me and actually explains some mysteries the drs couldn't figure out. Like my reaction to showers. the allergist said it acted like an allergic reaction but couldn't figure out why or exactly to what. A lot of people with my condition apparently have trouble with the temperature changes when getting out of the shower etc. Blood pressure drops (I've experienced those where it would bottom out for no reason) They also have problems with digestion in that they don't absorb nutrients as they should. (problem I've had forever) and it is suggested that they avoid gluten /etc. Which I was all ready doing. Actually I've found a lot of the life style changes I've adopted over time because of the symptoms I was having are exactly what was suggested for people with Chiari with these conditions. I stopped driving mostly because I was having dizzy spells etc. They suggest people with those symptoms not drive because something about sitting in the drivers position for a long time (the way you hold your head/neck) can cause that. It also appears that the stroke symptoms I had may not have been actual strokes but were instead instances of cut off CSF flow. Which mimicks a stroke and can be just as dangerous. Instead of blood flow your cerebral fluid is cut off from the brain. Also all this is occuring right around the Vegas nerve which controls pretty much everything so this is actually a very complicated and intricate thing to have. I'm glad to not have Parkinson's but this is something that will still affect my life. There is no cure. They mostly have to treat symptoms as they come and there is the option of a decompression surgery if it comes to that. They open the back of the skull and remove parts of bone to allow the brain more room and/or the membrane the holds the brain as well and adds something that essentially acts as a sling. This is no cure either and it is iffy as to whether it relieves some symptoms or not. I'm still learning but as I said I'm still trying to get in to a neurologist to find out in my particular case what comes next for me. It has just as many questions as answers. Then like my mom I think is in denial though this is something you can physically SEE on MRI and such. I don't know why but she is almost angry about it. I guess because it is such a complicated issue. I don't know though. Anyway it was quite a lot for me to take in. I all ready have other health issues and such. Though the ADD /anxiety are being dealt with some. Which has helped some. I am still considered high functioning autistic as well. Nothing to really do about that. Affects my past more than my future as I've learned over time to deal. I still find it affects me but it is the least of my problems. I think my biggest problem is I am the type of person to push myself past my own limits and I have to work on NOT doing exactly that. That is likely why my health issues have gotten so much worse. I have to allow myself to rest and I have to admit I can't do it all. I do still search for work arounds though. I am not an idle person. My body just isn't able to keep up with my mind I guess. I am starting to pick up on walking and such again to continue to try and lose weight. Walking is one of the things that is safe for me so I still have that. Also as I mentioned I got to be there to welcome my 2nd grandbaby into the world so that had me on a happy high. Then this month my second oldest welcomed my third grand baby into the world (her and her hubby's first baby) and I got to spend an evening recently at her house for dinner with her and her hubby and my oldest and her youngest. Best night ever. I was so happy. Our car broke down and that wasn't even enough to bring me down. I'm so happy for them all. Our car still isn't running quite right i hope to get that fixed soon. There is a lot more going on in my life those are just the biggest things. I've been struggling right now with headaches and other health issues but otherwise still doing ok. I've been picking up my crochet and art some. Staying busy. There have been a lot of appts besides my own lately. My mom had a cancer scare recently but wound up being okay. The lump they were looking at mysteriously disappeared. Hoping it stays gone she's been through enough. My uncle passed recently which means my parents are the last remaining out of all their siblings. This is kinda hard for me to think about. I will try to update again soon but as for me life is always busy sometimes more than other times. I've also made drastic changes to who I give my time to. If you've not heard of the spoon theory take the time to look it up it will help you understand those with chronic illness of any kind a bit more. I didn't have the spoons to keep giving to those who were only pretending. I should add there are those who were probably deserving of those spoons but life kept sucking me in so I just haven't been able to spare much of my time to anyone really. Just trying to keep my own head above water. 

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