MRI Musings.

 I am relieved that I will finally be getting a brain MRI to find out what is causing my immobilizing headaches, brain decline, forgetfulness, and various other symptoms. I am glad my doctor believes me and she validates me and is concerned as well and agrees with me that it’s not normal and that something’s wrong. It will good to finally have some answers and to know what we’re dealing with, unless, of course, it comes back normal(although I doubt it; SOMETHING has to be causing me all this trouble and show up)or inconclusive and then we’re right back to where we started. I was also surprised to learn when I was doing research on Chiari Malformation(the most likely possibility at this point, unless it’s an amazing coincidence since I have so many of the symptoms and everything’s all connected) that frequent urination, irritable bowel syndrome, and hearing loss(all of which I also have!) are also common in Chiari sufferers(on top of all the other symptoms I already have) but until now I never  knew were related; I just thought I peed alot as I was just “stretched out” from having all the kids, and that my daily cramps and diarrhrea was perhaps Crohn’s or Colitis, and that hearing loss was just a natural part of aging….The more I read, study,and learn, the more I find that all my ailments are connected and are all somehow related to my Marfan’s and/or Chiari. Chiari also only affects 1 % of the population(just like my Cholestasis was,too!) but that’s me; I always end up being that rare exception, the unusual statistic, the unexpected reaction, the unlikely case study, but never in the good way though; not in  the lucky sense! I’d be the one-in-a-million that would get hit by lightening, not the one-out-a-million that wins the jackpot!

I am eager to have the scan and find out what’s wrong(and to get it dealt with) but I also have concerns about getting  the scan such as what if I have a case of diarrhrea( I get it several times daily and usually have to take an Immodium daily) while I’m stuck in the tube for an hour? What if I have to go pee?( I generally have to go every 10 minutes or so) or I have an itch or have to sneeze? What if when they scan my brain they say they don’t see anything; that I don’t have a brain, or that it all shrivelled up and it’s really small(I’ll be sooo embarrassed!) I seriously wonder as well if I’ll even be able to stay completely still for that long(esp. with my sore back!) and I’m worried what if what they find ends up to be something really bad(like brain CANCER or something) or if they don’t find anything at all(and then I’m still no further ahead!) The gross thought occurred as well for people getting whole body scans if they’re on their periods that the scan would actually show the tampon in there,too (I laughed out loud at the gross visual at that one!) kind of like the naked body scanners at the airport, and if I end up getting my scan in 2 weeks I’ll be on mine as well. Ugh, “perfect” timing.

Either way, I’m glad to finally be getting tests done. The blinding headaches of Chiari are commonly misdiagnosed as migraines and the detection of Chiari is typically  overlooked by doctors, and the malformation is often  misdiagnosed and hard to treat and patients typically suffer for years before it is recognized and treated. For me it may even end up being something as simple as herniated discs in my neck causing neck pain and headache(although it still doesn’t explain all the other symptoms) although I have a strong suspicion it’s Chiari more and more all the time and expect that’s what will most likely show up(as does my doctor) and will actually be surprised if it isn’t….


Getting An MRI!

 I saw my doctor to renew my headache prevention meds(been on for 2 months now) and she doubled the dose as I was building up a tolerance to it since the headaches were still breaking thru.(It works as a mood stabilizer for bi-polar disorder as well) She also gave me pills to get rid of the headaches when they do show up,and meds for anxiety and stress, although nothing yet for my still high BP ( 160/100) as she thinks it might just be related to the headaches and stress and if you eliminate(or at least get under control) the headaches and stress you control the high BP; it’s like a circle. She also shares my concern that there is something wrong with my crippling headaches and increasing brain decline and forgetfulness and disagrees with my hubby and mother who just dismiss it as “age” since I’m only 45 and I don’t have a family history of early-onset dementia(the only person in my family to have Alzheimers, for instance, was my grandmother and she didn’t get it until she was in her 80’s) esp. added with the fact I have Marfan Syndrome(and my father and grandfather also had the physical traits of it (as does my oldest son) and very likely had it as well esp. as it is genetic) which often co-exists with Chiari Malformation,and I have the sore stiff neck that goes along with it as well, so there’s enough ‘high coincidences” that warrant an MRI scan, to either show what’s causing my concerning and worsening symptoms or to at least rule out what it’s not, or if it’s a normal scan for peace of mind that it’s not anything serious, and if it is to know what it is and what needs to be done from there for example be referred to a specialist and  if it’s a brain tumor I’d need surgery or if it’s Chiari I’d need brain decompression surgery). She said it might even be from an old head injury(like from when I fell down the stairs in Kindergarten and went unconscious) or low blood flow to a certain part of the brain,or seizures, etc. I’m just relieved that someone FINALLY believes me and takes it seriously! I have been begging for a scan to find out what’s wrong for so long! I know SOMETHING’S wrong and now I’ll finally have some answers! She surprised me as well to say it’ll be booked in just a WEEK; usually things in this country take MONTHS to book but she said the MRI at the hospital there (in a town 40 min. away) is NOT paid for by the gov’t(unlike in most other places) but by a fundraiser by the town, so you can get in quicker! I’m just so glad something’s finally going to be done and that I’ll find out what’s been causing all my symptoms!! I’ve never been so excited for a medical test! She also said due to my extensive blood work I had done before other things have been ruled out such as kidney disease or diabetes.

On the drive there I also saw so many beautiful trees with their fall coloured leaves, and a truck went by carrying piglets and they were sticking their cute little snouts out of the holes cracking me up, and on the way home we ate at Pizza Hut and I had a pasta and my hubby tried this new pizza that had a HOT DOG stuffed in the crust and it just cracked me up; I mean, who ever would have thought of the idea to put hot dog weiners in a PIZZA? It’s also going up to 20 C tomorrow and Friday but then dropping down to just 7 C on Sunday and a few parts of the country have had snow already,and my cousin who lives in the UK has left for Spain already(she spends every winter there) the 9 YR old calls antonyms and synonyms “Anthonys” and “symphonies”,and next door they finally filled in the 5-6 foot trench they had dug in their front yard but they have a portable outdoor toilet in the backyard that they still have to use, like an outhouse, but at least they have their electricity, heat and water back now!

“Breaking Amish” Episode # 7.

 In this week’s episode there was no video proof of Kate doing the things Sabrina accused her of and Abe and Rebecca felt sorry for her and defended her and think it was just a scam so that Sabrina and Jeremiah could get a room together and it made poor Kate think she was crazy because she couldn’t remember doing any of the things she was accused of. Jeremiah also said him and Sabrina had sex( even though records show she got married in 2009 so what would her HUSBAND think of that?) and told Abe not to tell or he’d blackmail HIM and Rebecca about THEIR secrets; that they knew eachother before, etc. but Rebecca would have none of it and got in his face and said there was no way he was going to threaten and blackmail her. Kate and Sabrina also tried to talk it out and Kate said Jeremiah likes conflict, to stir things up and to talk bad about other people. Abe and Rebecca also bought bathingsuits and went on a date at the beach and I find them the most likeable of all the people on the show and think the others basically come across as shitty,catty, shit-disturbing  people,and even more so than non-Amish people!

Abe also wanted to propose to Rebecca and was really nervous and wrote “Will you marry me?” in the sand but didn’t know how to spell “marry” and had to ask the cameraman, he gave her a rose and proposed and she was overjoyed and accepted!(what will happen later though when he finds out she’s already married? I found out on other sites such as and the Facebook page Breaking Amish The Expose) and the group got together to celebrate the engagement, and Kate went to the modelling agency to find out the results of her  previous photo shoot and she was accepted and got a contract and a 30 day trial! Sabrina visited her Puerto Rican  biological father and grandmother(who only speaks Spanish) as well who both looked frail and sick to me and the grandmother was bedridden and the father cares for the ailing old woman who said she isn’t ready to die until she met her grand daughter, and they said they love her and have photos of her growing up,told her that her mother was a good woman that loved her,exchanged phone numbers and will keep in touch.

Abe also went home to announce his engagement to Rebecca(and dressed in Amish clothes out of respect for his family) and his mother told him that Rebecca was already married to an Amishman and although she didn’t think the marriage lasted long she’s still divorced and that’s a no-no in Amish culture; you can’t be divorced and re-marry(you can only remarry if widowed, like in the Catholic Church) and if he marries her he will be shunned by his family and his community and can’t be Amish anymore! He was disappointed she with held this crucial information from him and she was defensive and said she was ashamed, her ex was a “jackass” and it’s not something she likes to talk about and that he should marry her for who she is now and not because of what happened in the past but he said he needs time to think it over and digest it all; it’s a big decision to choose between her or being Amish and keeping his family. On the last night of their 6 weeks together the group also made dinner and discussed Abe and Rebecca’s dilemma and Jeremiah said he too was married and divorced(yet has still failed to mention the fact that he has 3 kids and that his marriage was abusive, that he was arrested for domestic abuse several times , his ex has a restraining order out on him, and he has failed to pay child support) and Kate said if she were marrying someone who had been married before and divorced that she’d like to know and that it’s a big thing and the spouse has the right to know such a thing.(I agree!)

During the group’s final meal together they discussed the pro’s and con’s of Amish and Mennonite life, staying VS leaving,and Jeremiah said he joined the church and was baptized at 16 but was caught smoking at 18 and was disciplined and had to publically confess and repent or be shunned and said he told them he did but added only because he HAD to, not because he wanted to(which isn’t really sincere or true repentance) and that he ended up leaving at 19, Sabrina said Mennonites aren’t shunned like the Amish but they are judged unless they repent from sin and that they “make your life a living hell”, Kate and Abe stated if you leave they’d miss the support of family and community and would be scared to be alone, Sabrina said it’s easier to be Mennonite(than to leave and be on your own) but that you also have to do what makes you happy,Abe said alot of Amish want to leave but they don’t have the “guts”, Rebecca’s glad to have gone to the city and she learned alot, Abe said it’s hard to make a living in the city esp. without a decent education,and Kate said there’s alot of opportunities in the city but she won’t miss Jeremiah when she leaves!

In the next episode, the group all return back to their respective homes, families,and communities,and I wonder if in the final episode if they interview them and catch up on what’s been happening in their lives in the meantime, and if so, if they’ll mention about Sabrina being married, about Abe and Rebecca’s baby(now 2 years old), about Jeremiah having 3 kids, whatever happened with Kate’s modelling, etc. I wonder if they’ll come “clean” about all the misconceptions and deceptions and let the audience know that in fact they actually left their communities some 10 years ago and not just recently like they’re letting on?