The latest update…

So well I went and saw the Hematologist/Oncologist that is closer to my home.  Basically I wasted about 2 months of my life.  She was frank and told me that I’m losing too much blood somewhere, somehow.  Ok, well, all I have to show for that is my *woman stuff* which is like a good gory murder show each month, but aside from that, that’s it.  I have so many tests to get done I’m starting to get overwhelmed again.  She vigoriously felt up my chest, and she paused on my right boob and then asked me if I ever had a mammogram, I said no.  She started feeling again and came to pause between 9:00 and 10:00 on the clock (except on my goods).  Then she was like, I want you to get a mammogram, an ultrasound of the right boob, a ct scan of the chest, abdomen and pelvis.  I was so into just solving this iron problem, when she told me to discontinue that I kind of felt helpless. She gave me a paper and I went home.  I didn’t even realize the “severity” of the tests until Matt asked me how it went and he went and retrieved the paper out of the van.  He brought it in and started reading all these tests I have to get, it was overwhelming and scary.  In the office she made it out to be no big deal, but I just went through all this with my mom last year, and usually you get a mammogram first then if there is any problems you get an ultrasound.  I read the papers, and she had a specific location plotted that she wanted checked.  I guarantee I will completely flip out if I get told the ultimate cause for all this is some form of cancer.  That scares me.  I have to have my blood drawn for multiple myleoma and a few other things too.  All these words put terror right into my eye.  The plus to this is, if there is any, is that I can’t actually feel or find the spot she could feel something, so if it is there, hopefully it’s small and benigng.  My CT scan is this Friday, but I have to wait until June 5th for my Mammogram and Ultrasound.

My bone density test revealed osteopenia, basically thinning bones. I’m not quite at osteoporosis, but It could get that way in as soon as 2 years.  The rheumatologist said Flomax or Boniva could be what I will take in a couple years.  That explains the breaking bones and hand and foot inflammation though.  It did make me concerned that she wanted to send those results to the hematologist, which I really can’t figure out why, and I’m hoping something wasn’t spotted.  The bone density test was completely independant of anything the hematologist did. I just want to be better.

All I’m asking god for now is to please just give me a break.  This is not normal.  I want to feel human, get out and do things without strange things happening.  I’m tired of trying to give my history of just the last 3 years alone to every new doctor, but I get to add something to my list every 3 months.

I can’t say I’m not starting to crack.  I’m a tough cookie to crack, I’ve always been the strong one, the person everyone else comes too for advice and to talk. Nobody around me is used to me needing the help so they have no clue how to handle it, so says Julie My mom never asks how I am, or my brother.  My sister doesn’t usually ask to see how I am doing but if I start talking about it she will.  With virtually no real support system, it’s hard to keep the faith.  I want to have faith that there will be no more, but at the same time I just want to quit.  What did I do in life to deserve all this?  I have done nothing but help each and every person that needs help, rarely ever taking but always giving.  All I can say is I pray for the best outcome possible.

So anyway, baseball season is upon us!  So far I’ve only heard from Chris’ coach.  This year Caitlyn gets to play and I’m excited to see that!!  Andrew will play too, but he don’t like it much, so this will be his last year if he don’t cooperate. Chris is excited.  His first practice is tomorrow at Munson Park by the airport.

I started working on some resin jewelry.  I’ve only got unfinished pieces right now, but after the inflammation in my hands calm down I will likely wrap them in wire or put them on some bezels or something.  I try my hardest to be creative but I’m just not sure.  Pics to follow!

Andrew, Ava, Caitlyn, and Matt are all sick with some bug.  Andrew had it the worst, but I’m hoping it doesn’t spread to me!!  Ah well if it does I can’t imagine feeling any worse, so there is a benefit!!

Mother’s day was unfortunate.  Matt tried but I was more concerned with the fact that not one of my kids even cared to say happy mother’s day!  I can understand the girls, but Chris and Andrew really hurt my feelings.  We took my mom to dinner at All American Buffet which was really crowded and enjoyed that, so that was the good part of my day.

I bought all my flowers for the year at Schwartz in Romulus once again.  Getting the energy to go out and plant them is the other challenge.  I will do it today if the weather holds up.  I bought mostly petunias in my favorite colors, purple and “candy striped” variety, as well as some pinkish ones. I also got 2 hanging baskets of impatients (which I hate because they really are impatient if you don’t water them daily.  Chris picked out a bleeding heart basket, which I love and so do they.

My veggie patch looks horrific. I left it up to Matt to get out there and keep it watered by hose but I don’t think the pressure is there to water them.  They looked dried out and dead and I will be flaming pissed if all that growing work has failed me.  I just can’t leave garden work for Matt to do, otherwise it doesn’t get done or done right.  That is my speciality!

Matt got an invitation in the mail to his sister’s wedding.  The keyword in there is “Matt”.  Apparently the rest of us weren’t actually invited.  If we were, proper wedding etiquette says it must be addressed to those invited.  For something I was looking forward too if I could get past what is going on, I felt like crying when I seen that invitation.  It’s likely they are under the impression that if I can’t go that Matt will and that isn’t going to happen.   Right now I need assistance in even the most stupidest tasks, and I get driven to my appointments since I’ve lost my mind and am too scatterbrained.  I have sent out many invitations in my life, so the address job was somewhat blatant.    Oh well, makes me sad but whoever really cared about how I feel.  If I didn’t feel that everyone on Matt’s side of the family is anti-children, I might have taken that differently.

Oh well, I will write again when I have more to say

I’m so tired and it’s so hard to even write a blog.

Let’s start with the positives.  Chris is doing very well in school.  He struggles in Math a little bit, but that’s ok, I personally don’t know tooo many kids that don’t struggle in math a little bit. I love crunching numbers but I can’t even begin to explain how to do mathematics to someone.  Explaining addition and subtraction is one thing, but I don’t possess the teaching skills to explain anything else.

I’m a little more confident in Andrew after my failed conference (thanks to Ava MisBehavia).  I have to have another conference in a few weeks to discuss things child-free and actually be able to focus.  Andrew is just a lazy learner and for some reason doesn’t want to show us here at home what he is learning and wants us to think he’s lazy or something. I don’t get his process of thinking but as long as in reality he’s doing ok, and not terribly behind that’s ok.  I get some fascinating art work here at home of animals and stories he shares at school.  I am getting kind of sick and tired of his story telling though.  It comes back on me for some reason and it pisses me off.  Like yesterday, the school calls me while I’m in farmington hills, which is like at least 60 miles from my house, to tell me his shoes and pants are wet.  Why? Because he told the school that his dad said he could chase frogs in the ditch and if he caught one, could keep it.  Um, no.  Where did that story come from?  In little Dewey’s mind fascinating stories emerge and the school actually believes it and that makes me even more mad.  It won’t be their education that pulls me from the school, it will be whoever’s on the other end of that phone’s attitude to me that causes it and that’s unfortunate.  I just love the fact that when Andrew was like 2 or 3 years old his first crazy story was when we were driving in the car to some function with my BFF Julie and right in the back seat he was like, “Remember when Julie ‘drownded” me in the bath tub”, and we just busted out laughing because a) Julie had never been near him in a  bath tub and b)It was just so random it was funny.  Since then his teachers, even in Southgate, knew that the stories were great but not real.  One time he went to school and announced he had a pet alligator in his  basement.

Ava is doing well, no more further problems or anything to remotely figure out what happened that landed her in Toledo Children’s hospital for 5 days.  It was the craziest thing.  She is a monster though, and I wish this brat phase would end. She is easily forgiven though when she comes up to me and wants to “share” her sucky and rests herself on me so I can rub her legs and back

Matt is on the hunt for a new job. GE is not a good employer and their benefits suck.  What the hell is the point of having a $2,000 deductible and $3,000 out of pocket max if you are a healthy person.  Sure I’ve already maxed that out for the year, combined with Matt and Ava both paying the hospital a visit, but in a normal healthy year I wouldn’t experience those kind of costs.  My insurance won’t pay for nothing until I have met my $2000 deductible, including prescriptions.  This shit insurance costs $400 a month too.   You’d think one of the largest companies in the world, who also has divisions in health care could come up with awesome benefits. Nope, not only do they not pay taxes in the millions or billions, they also don’t care about their employees… which is why Matt is on the lookout actively.  He’s hoping for $110K a year for the next job, so hopefully he goes up in the chain and not sideways again.  Health insurance is very important as it has been the last couple years and it has failed us big time.  Just because a company advertises that they offer Blue Cross Blue Shield PPO as a benefit does not mean it’s cheap or even good.  Whoda thunk a company like General Electric is that cheap.  We should at least get free light bulbs or something.  The G.E. discount on appliances is almost non-existant too.

So woohoo, obviously I have no cast on anymore because otherwise I wouldn’t write this much. It feels good to have it off though, casts suck.  I just need to be extra careful because I break things too easily these days.

Now onto the typical depressing stuff, ha ha:

Other than that, I don’t know what to say really, I’m tired. I don’t have the motivation to even write anymore, and for those that know me would find that hard to believe.  I quit my iron treatments pending a 2nd opinion.  I have had 8 iron treatments, so 2 months worth.  Any improvement? Not an ounce.  It’s really frustrating and depressing blood results every single week fluctuate so badly that it just wasn’t worth it.  Since I started infusions, aspects of my CBC (complete blood count) were actually getting worse.  My hemoglobin and hematocrit would bounce from being badly out of range to just slightly in range, my differentials (4 types of white blood cells) started going downhill, my white blood cell count is tanking, and why?????  What happened to me, or what is happening to me?  I can’t blame the gastric bypass, it makes no sense whatsoever.  I put my body through hell with a pregnancy just after gastric bypass and my ferritin (iron stores) and iron levels remained good and constant the entire time.  Why 2 years later would I have an issue, it don’t make sense.  There is only one thing that happened the month my values started declining last August and those that know me and read know what happened.  I don’t have the energy to get into it yet again, but lab work doesn’t lie. 

I have to go under anesthesia one more time again, like the 9th time in 3 years to hopefully get some answer.  The rheumatologist ordered a bone density test that I had yesterday checking for osteoporosis because of the fact that I have busted bones a couple times in the last year. Now i have to get an EGD again.  It’s a scope that will once again check the lining of the bottom of my stomach pouch to determine if/what kind of damage was done last August. I really hope they find something because none of this makes any sense.  On paper it all makes sense, now I just need to back it up with some physical evidence.  I am suffering because of it and that is the only thing that makes any sense that was ignored.  It was ignored on purpose, otherwise they would be liable.  I have to get to the bottom of this, the qualify of my life is horrible. It could be worse, and I’m thankful it’s not, but for someone like me, this really sucks.  I have what they would call severe anemia, and it’s starting to effect me cardiology-wise now.  I have also been diagnosed with Raynaud’s Phenomenon, which is an auto-immune disorder, but it’s hematology-related.

There is something someone is missing.  After 8 iron infusions into my blood, it’s not working.  That leads me to believe that something else is happening.  The rheumatologist told me to please get a 2nd opinion, she thinks more aggressive treatment is necessary.  She agrees something else is going on somewhere.  The hematologist didn’t ask why she thought this was happening, never ordered any testing, nothing. She said start treatments, i’ll see you in 2 months.  Well, almost 2 1/2 months later I’m not any better off, and I feel like i’ve wasted 2 more months of time.

I have no help whatsoever.  Ava is going through a nightmarish period of getting into trouble and screaming so I can’t really even leave my house during the day. Even going to the store is impossible because the minute her behind gets buckled in a car she throws a temper tantrum.  I tried to go to Hobby Lobby the other day and peacefully shop for some stickers and she just wouldn’t have it.  I didn’t care though, and I could give a crap because nobody was there, only a couple old people, and oh well, I was going to find my stickers!  I found some packs of jingle bells though and thankfully that kept her quiet for about 5 minutes.  I have a hard time focusing right now as is, I certainly can’t focus when my baby is freaking out and screaming like she’s being tortured.  At Chris’ conference I had with his teacher the other day, it took everything I had not to bust out crying as soon as I left because she would not let me talk to the teacher.  She would not stop climbing onto the tables so I had to jump up every minute, then she would freak out.  At one point I strapped her in the stroller and she managed to still flip herself out the front of the stroller and hit the floor.  At one point she managed to climb on the table, then she fell off, smacked the seat of a chair on the way down, and I felt pretty sheepish then.  It just never ends. 

I have no babysitters, and I don’t ask Matt to help anymore because I don’t want to affect his job.  My mom asks for money every time I leave the kids with her and I don’t feel like I should have to pay her or be sucked into a guilt trip for doing it. 

Things that make me happy though is like this even when I awoke from the sleepy state i’ve been in for a few days now, Caitlyn says, “MAMMA!!!!” and comes in the living room, puts her hands on my cheeks and says, “Are you ok? Are you happy?” And I say, ‘Yeaaaah, I’m happy” and she responds, “Ok, mamma, do you feel better?”  Then she will grab a wet wipe and put it on my forehead and rub my face (like I do for her) and say, “Ok you’re better” and I say, yes “I love you” and she says “I love you back”.  At least 1 of my 4 kids cares, lol.  I love my kids. Caitlyn is a darling sweetheart, an angel, and the sweetest little girl, but man oh man, she can throw the biggest “bitch fit” when she’s mad, ha ha. I call it the “baby B.F.” 

This sucks!

I can’t emphasize how much this sucks with 4 kids. I have like less than an inch of exposed fingers to work with and it goes nearly to my elbow. I’ve already spilled soy sauce on it, and that mixed with smelly soap they purposely rubbed in it is sickening. I thought at very least i’d have some fingers to work with, but no. I have to figure out how to drive somehow, and to buckle 2 car seats! Matt’s considering vacation time, but i don’t want him too. He has 3 weeks to use but i’d actually like a vacation this year if I don’t fall apart completely This is great if you’re a kid but as an adult it sucks! You can’t miss me in neon pink though… Ii could have had glow in the dark green too…!

Can you really believe this? This can’t happen anymore.

Yes, can you believe it?  I broke my wrist.  I just want to scream so loud “WHAT THE HELL!!!!!”  Give me a break didn’t mean literally give me a break!!  So the picture above is about 2 days later, and I haven’t got a permanent cast yet.  The hospital gave me a temporary one, but I replaced it with a solid wrist brace, which outdoes their stupid sling any day.  I am taking a breather at the moment though, something I won’t enjoy this week when I get the flashiest cast I can on my arm to represent the coolness, the brightness of the person I once was before all this stuff started piling on at an unimaginable rate.

So I’m a handful of treatments into the new infusions, no difference yet but that’s expected.  My last iron level was 6, yes, just 6.  So that was last Monday. I frankly asked the hematologist what happens when it hits 1 or none, and she said that the lowest they’ve seen is 1 and that person was bad off.  They expect someone with my values to be really bad off.  Unfortunately, it seems only a hematologist knows this.  Normal doctors don’t see this kind of stuff every day so they have no idea the problems this can cause.  It really is life changing when it gets so bad.  I’m just praying at this point it works, something must.  I’m so weak, so tired, I’m ready to be done.

I saw the rheumatologist people this week before I broke my wrist.  They were suspicious of a rheumatic problem. I was given a blood pressure med to help with the loss of circulation. I had to get xrays to figure out everything else.  Well, then I broken my wrist, and they showed me the x-ray and the report. The report clearly says “periarticular osteoporosis is seen”.  The doctor pointed out normal arthritis as well, but this caught their attention because it’s the first visible sign of rheumatoid arthritis, and there was no denying it was there along with my shattered wrist.  Ok, so things are slowly starting to make sense and once I can get all these specialists coordinated with each other all I can see is light at the end of the tunnel.

I broke my wrist in the stupidest way that shouldn’t have caused a break.  Just like last year’s broken tailbone, just stupid stupid things.  I was chasing Ava up the stairs and my pant leg caught the baby gate and I flew forward and hit my hand on the steps.  A normal person would be sore, not broken and shattered.  Oh well, I pray for an end soon.

Ava is doing remarkable, you would have never thought what happened a couple weeks ago happened.  Just some weird freak thing out of nowhere.  She is perfect now, thank god. 

Andrew brightened my day yesterday though by making me laugh.  Randomly out of nowhere he walks into the living room and says, “Can you write me a note to my teacher that says I’m adopted?”  I was like WTH where did that come from. As soon as I busted out laughing he ran off to his bedroom!  Of course he wasn’t serious, and I made sure to show him all of the photos of him in the hospital with me, and showing him the photos of him in the incubator with tubes next to his current stuffed animals!  I asked him if he thought he was born by a leopard family and given to us to raise and he just laughed and ran off.  It’s these silly random moments I wouldn’t give up for nothing.