Alpha 1 Antitrypsin.

LungsAndLiver We might be starting to get closer to uncovering the medical mystery as to what’s causing all my mysterious symptoms and decline. I went online and was able to access my blood work results. This time it also showed that my alpha 1 antitrypsin was low, 0.81 when the normal range is 1-2. They said that anything below that normal range usually indicates  a deficiency of the protein caused by a genetic disorder! Maybe that’s what’s been causing all this trouble all along?

I have no idea what the hell that even was, despite knowing quite alot of medical stuff having grown up in a medical household, but this one I had never even heard of so I had to Google it, and it turns out it’s a A1AT protein deficiency inherited from both parents, due to a faulty gene on both sides(if you only have one gene of it then you’re a carrier but don’t actually have it yourself) and due to it they are odd-shaped and unable to leave the liver where they’re produced to travel thru the bloodstream to the lungs where they are also needed and as a result you have breathing problems(as the lungs need it too to function properly) similar to asthma(like I’ve always had my entire life, even as a kid, the shortness of breath, wheezing, coughing, and inability to breathe that my hubby always denies that I have and taunts that I’m just lazy and using as an excuse,and that gym teachers in school always accused me of making up just to get out of gym class….. it also affects the liver and first shows as constant elevated liver enzymes on blood tests (sound familiar?) and gallbladder ( and something like 12 people in my family have had theirs taken out or had gallbladder cancer if not….) and sometimes even failing enough to need a liver or lung transplant so it will interesting to see if this might be it and where it may lead…at least we’re finally starting to get some answers…

I guess the next step to go from here would be to take certain tests that test for genetic markers, to confirm or rule out a defective gene and possibly a liver or lung biopsy. Then if it turns out positive, what about the kids? Could any of them have inherited it,too? They say symptoms typically begin to appear around age 40-50 but you can have breathing issues as a kid and you should avoid the Flu vaccine as well. Not that I’d ever get it anyway when everyone I know who has ever gotten it has gotten really sick; even sicker than if they had the Flu! Oh, shit…. my hubby also mocks me that I don’t really want to die otherwise I wouldn’t be getting all my ailments looked into, but I’m curious as to what’s causing it all, and it doesn’t mean that I’m going to do anything about it ( for example, if it turned out I had cancer I wouldn’t get chemo; I’d just let it  take it’s course) I just want relief from the symptoms.

Never Good Enough.

IAm I was mentioning something or other about Heaven and my hubby snorted to me, Yeah….like you’re ever going to make it there!  I told him, What can you say? At least I have a strong faith in God, cultivate and nurture that faith, go to church, respect God, and don’t blaspheme holy things, unlike you! What an asshole, and who is he to say,anyway? Only God can judge and at least I try; I make an effort, work towards that goal and have tried to raise my kids godly. Even though they’ve turned away from it at least I did try. I’m really pissed-off though; who does he think he is to say I’m  not worthy of Heaven, that I’m not good enough to make it; what makes him think that he’s “qualified” to judge anybody? He’s a godless heathen! Ultimately,and what really matters, is what God thinks, not other people, and on Judgement Day we will all have to face Him and he doesn’t care if we’re pretty or popular, or smart, or successful; He will judge us on our heart; what we’re really like on the inside, on how much love we have, how much love we give, how kind we are, how compassionate and sympathetic, how we treat others, how much we do the right thing, even when no one else is looking, on our integrity and ethics, on how much we respect and obey Him, how strong our faith is, what kind of person we are…

As well, my hubby also made a snarky comment that I’m to blame, that it’s my fault for having White Matter Disease in my brain, causing me to be forgetful and confused like an old timer with Alzheimers and when I asked him, Really? So does that also mean if it turns out I have a heart defect, or even cancer, that that’s my fault,too?……and the asshole said, yes. Words can’t even begin to describe how miserably unhappy I am with him and how every second of every day I just can’t stand living under the same roof as him anymore(I can’t even bear to look  at him anymore) and just have to get out.I want to divorce his ass and start over; a new life, a new beginning, where I might actually have a shot at being happy but I can’t do it on my own; I need help. The other day Patti and I discussing my toxic family she also asked which of my kids is the nicest to me and I thought for a minute and it’s the oldest and the 18 YR old.

I went to the lab and had more blood work done again as well and got my heart CT scan app’t booked for next week and Patti said she should be able to find out in early March if her dog is pregnant or not….if Buddy is going to be a father…. if her dog is Buddy’s Baby Mama! I don’t really think she’s thought ahead about puppies though as with her perfectionist neat-freak obsessive personality I don’t think she’s aware how messy puppies are; they pee and shit everywhere and chew things up….that’s just going to drive her crazy. She also hadn’t thought ahead of the expenses,either; when we bred our Chihuahuas years ago back in the 80’s the mother needed to eat more prego, and calcium supplements in her diet as well as pre-natal vitamins and she needed an x-ray to check the pups and complications at birth she needed a cesarian with cost 800$ (and that was back then)…and it turned out she died and we had to hand-raise the puppies, incl. feeding them every 2-3 hours,incl. during the night, with a special formula and then they need 3 sets of vaccines before you can sell them at 8 weeks +….in a way it would sort of serve her right if after that she’s not even pregnant….ha,ha…

Tuesday.

Screen Shot 01-16-18 at 06.01 PM Yesterday the 14 YR old had her now monthly visit at the clinic. It went well and they said she’s in remission(from the eating disorder) and now 98% to her ideal weight! Isn’t that amazing? She’s doing so well!! She’s been in treatment for 10 months now, since last March. They also are starting to wean her off one of the medications and she had blood work done (which she didn’t like at all, she’s like my hubby that way) and an EEG to make sure there are no side-effects from the meds. We go back next month and they said we’ve basically graduated but they want to wait awhile before discharging her completely to see how she responds going off the meds plus we’re waiting to get a family doctor she can be followed up by and who can also prescribe meds as needed. I applied awhile ago but it takes months, sometimes even longer, I remember when I applied for mine it took around a year before I finally got my referral!

I was surprised that we even made the appointment on time,actually, and in fact, we just made it, as due to the snow there were 2 accidents on the highway and so we had to get off the highway twice and take the long and winding road, which made our trip even longer and slowed us down. Once we got back onto the highway for about 25 minutes or so it was eerie and weird too as we were the only car on the road and I really wondered if maybe we weren’t supposed to be there, like if the police had it shut down and evacuated for some safety issue only we didn’t get the message and there we were….rolling along, totally oblivious…but then later on more cars showed up and I felt better but it was just so weird being the only car on the highway.

I also finally did a shit on Tuesday as well after being horribly constipated and not going for 3 days, and before that I was shitting out hard little marbles, pellets, and my abdomenal pain was just getting so bad but I gritted my teeth and pushed thru the pain at the clinic and we finally did make it ok and once we got back I took 2 stool softeners and I finally did a shit….hallelujah….and it was glorious!

Ruined Sunflowers.

Screen Shot 08-11-17 at 11.56 AM 001 If someone were to ask you What kind of flowers are these? what would you say? They’re actually sunflowers  even though they’re not yellow! My mother picked them up when she was at the grocery store and they told her that they’ve been dyed orange and red and the leaves are purple! I was just speechless…..just ….horrified when I saw them, I mean, who the f*ck dyes flowers? I LIKE them yellow, the way they’re supposed to be, that’s what makes them look so bright, cheery, and happy! Dyeing them just ruins them! It would be like black people dyeing their skin white; they’re beautiful the way they are!

WTF?

When I first saw them I didn’t even recognize them as sunflowers, it didn’t even register in my mind what I was seeing and thought they were some type of mums or something, and then when she told me it just made me sad. It’s a travesty. When I put them in water dye got all over my hands,too, pissing me off even more. What were they thinking, to ruin beautiful sunflowers like that and why would she think that I’d like them? So now her and my hubby are acting like I’m some sort of ingrate or something because I don’t like them, but it’s just not right; they don’t look like sunflowers and have been ruined. It’s just wrong. They’re beautiful the way they are. It’s an insult to sunflowers really, to do that to them. Defaced.

As well, I got the results from my colon cancer test and everything’s ok,and I went online and got my blood test results and that’s ok too except it showed slight kidney failure, just like last time, and I still have that headache as well, now 5 days in a row, that just won’t go away no matter what,and at times my ears ache with it,too, almost as if there’s pressure or something building up in my head, and I also noticed this big bulging vein on my forehead on the left temple when I lay down,too, and it wasn’t there before, so maybe something’s going to pop or something…..oh, well…..

The therapist also criticized how I prefer to do things(and go places) on my own rather than with my family (or anyone else) but I’m just a loner and I’ve always been like that, perhaps due to my Asperger’s, and maybe also because I grew up an Only Child and was always by myself, but I just prefer to be by myself than with other people, and I find it more peaceful and less stress, with no one to bug me, and even when my hubby and I went to Hawaii together we did our own separate things; I went off on my own and swam, surfed, kayaked, snorkelled, etc. and he did his own activities and we’d just meet up for dinner, and when I go to the “Ex” I go off on my own and meet up with them at the end of the day,and even in the Caribbean my mother would usually just stay on the ship and I’d go off on my own and wander around and I really enjoyed my solo trip to Cuba where I was alone the entire time. I just prefer to be by myself. What’s so wrong with that? I hurt in life  but I hurt less if it’s just me on my own. It also doesn’t help that my family pushes me away, making me want to be alone even more.

 

Nuclear War?

Sooooo, guess what that crackpot Trump has gone and done now? He’s not only provoked North Korea but has now even threatened them with nuclear war with his bluster and tough talk, about “fire and fury” he’ll send upon them like never seen before. All this due to North Korea testing it’s ballistic missiles….just like every other country also does, incl. USA, yet for some reason USA has declared itself(once again) Policeman of the World and decided that North Korea is not allowed to, as if someone made them boss of the world, and then threatened them by basically declaring an act of war, with North Korea responding in kind by saying they’ll send missiles to Guam, which is an American territory in the South Pacific (close to the Korean penninsula) where they have a military base.

and so now the whole world sits on edge.

I’d hopefully think that cooler heads will prevail and this is all just nothing more than bluster, sabre rattling, and tough talk, but that nothing more will come out of it, esp. since tiny North Korea, despite it’s military capabilities, will be obliterated by American forces, and the same story keeps on repeating itself over and over again in history every few years: Imperialist war-mongering USA bullies a much smaller nation, usually with no one else coming to it’s defense(and who’s going to stand up for North Korea?), and no one has the courage to stand up to them, but Kim Jong Un is not someone who seems to put up with that shit and has the balls to stand up to them(and I admire him for that), but hopefully no one will take it to actual war, esp. nuclear war which would be catastrophic and not beneficial to anybody.

I remember the last time I feared the real possibility of a nuclear war was in the 1980’s when that looney Reagan was the American President and tensions were high between USA and USSR during the Cold War. I, of course, was on Russia’s side, naturally, old Soviet guard that I am, and even now my hubby are on opposite sides politically(we can’t agree on anything, although we are both committed to being united and  working together to help the 14 YR old in her recovery); he says North Korea started it and “asked” for it by testing missiles, but they’re not doing anything any other country doesn’t also do, so why are they only being singled out, and USA started it by threatening them first. I’m not a fan of the Kim regime, but I also don’t like to see The Little Guy being bullied by The Big Guy and I’m sick and tired of USA and their interference and war-mongering in other countries.

As well, I was woken up at 3 am with that bad headache, which I still have now, and nothing, I mean nothing gets rid of it, making me suspect that there might be something more going on, like perhaps an impending stroke  or aneurysm, or perhaps even a brain tumour or something, and I went to the lab and had blood work done as well( maybe that will give us some idea?) and the 10 YR old thought that they took all of my blood out and drained me dry! He also snarked to me, No one loves you anyway! and even told my hubby to shut up! and he got mad….how dare he talk to him like that…..yet they talk to me like that all the time and no one cares, and the 14 YR old(when I reminded her about something) yelled at me, You can shut-up now, ok? and the 16 YR old scoffed, Just because you have a bath every day doesn’t mean you don’t stink! and my hubby says the coconut oil I use as a moisturizer “reeks” even though coconut smells good. Why do they always have to insult me like that and talk to me that way?

The therapist at the clinic also phoned and wanted to talk to me but I have nothing to say to her and didn’t want to talk; she just stresses me out and I’m still trying to recover from the session on Tuesday which really broke me hard and made me feel like I was being almost interrogated, esp. since I was the only one being grilled and singled-out for criticism and blame, and it’s harmful to my own mental and emotional health, so she ended up sending me an e-mail instead and she apologized for making me feel like shit and said that wasn’t the intention but said therapy is “hard” but did agree that she was “harsh” on me and could see why I felt that way, and asked that I return so I told her I’m willing to try one more time but if I feel overwhelmed or under attack again I’m just going to get up and leave the room and walk right out the door as I refuse to subject myself to anything that makes me feel even worse about myself and jeopardizes my own recovery, and that I try to avoid conflict, not engage in situations that will increase my stress.

I saw singer Sinead O’ Connor’s public plea on Facebook as well where she says that if you are mentally ill that everyone just invalidates anything you say, think, feel, etc.. and spending your life just trying to stay alive every day is NOT living, and she’s so right. I could so relate to her struggle and what she was saying. It’s almost like we live parallel lives and her family treats her like shit and hates her and blames her for her illness just like mine does to me for mine,too; there are so many similarities I could really relate to her tearful video and I just felt to badly for her and her need to be loved, understood, supported, and just to be treated with some human kindness and compassion.

Doctor’s Appointment.

Screen Shot 08-21-16 at 07.25 PM I saw the doctor, the Internal Medicine specialist, not Dr. Dumb-Ass, and he took my BP( it was up a bit, 130/80) and listened to my heart and lungs, and we went over my recent blood work and my potassium and kidney tests are good,and my aldosterone levels are still higher than normal but better than last time, now they’re only in the 400-range as compared to the high-900-range in the winter so whatever it is seems to be resolving itself and he didn’t seem too concerned about it and said to see him again for another check-up and get more blood work in 6 months and my hubby said I won’t be needing that app’t if I die before I’m 50, as I turn 50 in January.He said my allergies are worse this summer too is because of the humidity. I also saw a lady from church in the waiting room, and my cousin in Europe with cancer has been given under a month to live and now her mind is “gone” and she’s no longer the same person she was and it’s really hard for her kids.

The 21 YR old also stole my chicken pie! There were 2 pieces left for me when I got back from the Ex the other day with my name on it saved for me and then they were gone….and I saw them packed in HIS lunch bag so I took them out and hid them and put them aside for my lunch the next day! What nerve! He already HAD *his* and he’s always taking everyone else’s food, even when it’s clearly marked with a name or even on someone’s place-setting! He’s such a pig!

Screen Shot 08-23-16 at 03.33 PM 001 Here’s also the cool awesome latex hippo mask I got at the Ex, and my legs, feet, and back are still all stiff, sore, and achy from all the walking, even though I did rest in-between and sit on a bench or while watching the shows as with my breathing problem I can’t walk too much or too far at once, and we went to the dump and put all the garbage, junk,and crap in the trailer and they weighed it and it weighed 1500 pounds and cost 110$ to get rid of! I couldn’t believe it; I mean, who can possibly have that much crap, and that’s not even our biggest amount,either, before we’ve had over 2000 pounds! Where does all this crap  come from? How can anyone possibly  manufacture so much junk on a consistent basis?

Screen Shot 08-23-16 at 03.34 PM 001 Here is also a better picture of my porcupine fish I got. It’s now in it’s new home, hanging up on a hook on the ceiling in my bedroom. If you look closely you can even see a glimpse of Bob Marley’s face in the background from my Bob Marley calendar on the wall,too!(he’s on the bottom lower right) The fish is the coolest thing, ever,and definitely unique, and not everyone has a porcupine fish hanging up in their bedroom.For some reason I really get a kick out of it.

Yesterday.

Screen Shot 08-09-16 at 03.56 PM Yesterday I got my passport photos taken, as seen here, also known as my mug shot. My old passport expires soon and I have to get a new one. Now we have a 10 YR option instead of the usual 5 YR one so I’ll be getting that even though it costs close to 200$ but it lasts longer and so  less hassle less often. The lady taking the photo had to keep re-doing it as it was soooo hot (32 C) and I kept sweating, with beads of sweat on my forehead, making a “glare” in the photo which they reject on passport photos as they’re sooooo picky, so she went over to the cosmetics counter and got me some blotting powder and a mirror and I went to work touching up my face to mask the shine. I felt like I was a model getting ready for my photo-shoot……except for the fact that I’m fugly, and I look like a man, and passport photos are notoriously hideous,and you can clearly see my turkey-neck….ugh… you’re not allowed to smile or show any facial expression,either, and have to look so stern, but as passport photos go I guess it turned out ok. It’s good you can’t see my hands though as with the heat and my fluid retention they’re so puffy my knuckles now look like dimples and my left lower leg and ankle’s all swollen,too.

I also went to the lab for blood work and even though I had booked an app’t online I was waiting…..and waiting….and waiting….and after forever I went back up to the reception and told them I’d had an app’t something like 25 minutes ago and did they “forget” about me, so they checked and somehow they’d misplaced my paper and it was mistakenly put in the wrong pile hidden underneath something so I kept waiting to be called and I never would have been had I not gone up and said something….and then when I finally WAS called in after that they said the test( for the aldosterone level) had to be done in the morning, 2 HRS after I get up and before 10 am( it was now around 1 pm) so I have to go BACK again another day and have it done……so I just had the other blood work done since I was already there.

It figures.

It was another one of those days. I have them ALOT. Why DO these things ALWAYS happen to ME? I am a living, walking, talking Murphy’s Law. I feel like a jinx.

Test Results.

TestResults I went online to find out my blood test results so I wouldn’t have to wait in suspense until next week when I see the doctor but it took me 2 days of trying before it *FINALLY* worked and I was able to get in and access them! The first day the stupid thing refused to accept my e-mail and password; it kept saying they were “invalid” no matter how many times I tried throughout the day and then the next day I tried again and for the first few attempts it kept rejecting the file number they gave me for my report but eventually it worked(even though I never did anything different; things just don’t work for me;I’m convinced I’m a “jinx!”)…and just as suspected and what the doctor was testing for: I have very high aldosterone levels, an adrenal tumour “marker.”

Not only is my aldosterone level high but my renin level is low,and the aldosterone-renin ratio is “significant evidence of aldosteronism”, meaning an over-production of the steroid hormone aldosterone, and there are 2 causes: either a tumour on the adrenal gland OR the adrenal glands are enlarged and over-active and produce too much aldosterone, which in turn, are responsible for my symptoms: high BP, fluid retention, depleted potassium, etc. The average aldosterone-renin ratio is 53 or less and mine is 98 and anything higher than 84 is a positive result. My aldosterone level is also 988 and the average range is between 83-979 and the average renin level is 5.0-60.0 and mine is 10.1 which is considered to be low.

When I see the doctor next week what he had said before is that if I tested positive for this he’d book either a CT or MRI scan for visual confirmation of a tumour and put me on a medication to lower the aldosterone level which also is a potassium-sparing diuretic and if it is a tumour surgery removes it and will also eliminate 3 of my 7 meds, and if just merely enlarged adrenal glands that are over-active it can be controlled with medication. Either way, I’m glad to finally have an answer to my symptoms and to soon be able to have some relief! I was also doing research on it and they often do a AVS test as well where they thread a catheter up your femoral artery in your groin up into both adrenal glands and take blood samples to test the levels of aldosterone in each one and if higher on one side than the other it confirms a tumour on that side but if both sides have the same amount indicates  not tumour-related.

As well, on the local radio station they said if you want to see some really cool outdoor Christmas lights to come to OUR house and they gave our address, my hubby now has laryngitis with his cold and he sounds like a Munchkin from the “Wizard Of Oz”, “Mr.Bill” from the old SNL, or like he sucked helium out of a balloon, and I ran into Patti when I was walking Buddy and she was walking her dog and she was ok and we’re still friends, and she said she actually got ADDICTED on the painkillers after her surgery and now has “withdrawal” since her doctor cut her off “cold-turkey”; she was on them for 6 WEEKS! When I had my last surgery I only took them for the first 2-3 DAYS! I also dread Christmas because I fear that I’m going to be the only one without a gift under the tree; that no one will bother to get or make me a gift; symbolic of how no one cares about me, how my family treats me,and how I’m always over-looked and left out.

 

Blood Work.

Bloodwork I went to the lab and had my blood work done and I had to go twice in the same day: at 7:50 am and then again at 2:40 pm to have my aldosterone and renin levels checked at different times of the day.In the morning they took 4 vials and in the afternoon only one. In the morning it was cold: only 4 C and I had to wear my heavy sweater and wool hat, but for the afternoon app’t it was really warm( unusual for December!) a balmy 14 C and I just wore my pilot bomber jacket!

Patti also bragged on her Facebook that a friend of hers is taking her to see Phantom Of The Opera and that they have 600$ each balcony seats and staying overnight at a hotel, knowing that I wanted to go but can’t afford it, and  to make it even worse is I know she’s just using the guy too because she told me before that  he likes her more than a friend but that she only likes him as a friend but goes out with him anyway as she still gets to go places for free, but it’s not nice because she’s just leading him on and giving him the wrong message and using him. She also talks behind her friends backs to other friends so I can only imagine now that she’s talking about me,too…

It also “gets” me that the family is bending over backwards to accommodate the 17 YR old in HIS depression and suicide attempt( and I completely understand that) such as re-arranging all the kids around( eg. doubling- up the 12 and 14 YR olds so they have to share a room now)so he can have his own bedroom…yet they NEVER have for ME with MINE, but rather blame me and hate me for MY depression and other limitations and treat me like I’M just a burden with mine, so what gives? Why the difference? Why do they go thru such efforts and lengths to help him with his  and go out of their way yet condemn me for mine? WTF?

As well,my hubby told me that he never got me a Christmas gift using the excuse I “never told him what I want” which is bullshit when he KNOWS I love hippos and all he has to do is to find hippo stuff and he knows I’d like it, and he also hissed that I’m “terrible”, “rude”, “inconsiderate”, etc. and I told HIM that HE’S always critical and belittling, and it’s sad that going off to my room and lighting up a joint is my only escape from my  family and I face a hidden darkness and pain that threatens to pull me under, and he also snickered that Christmas is a “pagan” holiday as it used to be a pagan Roman holiday but it’s now been reclaimed for God,and sneered that Hallowe’en (Satan’s Day) is “more ‘Christian'” than Christmas is even though it’s STILL the most “holy” day for Satanists and the holy day is the day AFTER, All Saint’s Day, and he scoffs that the church is “full of hypocrites”, always poking fun of and insulting religion and God and anything that’s important to me and that I value.

We used to do the Elf On The Shelf for the Christmas season as well for a couple of YRS but last YR I kept forgetting to hide him in a different spot each day and he’d stay in the same spot for days and the kids kept on forgetting to bother to look for the little bugger every day,too( and Buddy tried to eat him as well) so we didn’t do it at all this YR.

The Lab.

LifeLabs So I went to the lab to have my blood work done….but they told me that I was supposed to have the test done in TWO parts….and that the first part had to be done before 8 am and the second part just before 3 pm…..so I’d have to re-book and come back again another day so it was just a waste going down there all for nothing but luckily I wasn’t too pissed-off because I got to get out of the house and at least it wasn’t too far, only 5 minutes or so away. I asked since it was the afternoon if I could just do the afternoon part of the test then and come back another day for the morning part but they said they both had to be on the same day.

Doesn’t it figure? Just MY “luck.”

As it turns out they’re measuring for certain hormones in the blood that are secreted if you have a tumour on your adrenal gland/s; one should be high and the other should low if a tumour is present and I guess the levels change depending on the time of day so once I got home I went online to book another app’t and wouldn’t you know it…..all the morning app’ts were all already booked up until the middle of DECEMBER(I guess for all the people that have to do the fasting tests) and then I finally got one( and an afternoon one the same day,too) and just in time as my follow-up doc’s app’t to discuss the results is a week later!

Next week I go have my echocardiogram to check my heart and then the week after I go to the hospital to get my nasal passages widened and then the week after that the blood work and then the following week I see the doctor, so that’s an app’t every week. I feel like a broken down old jalopy. I need an over haul!