The Health, It Sucks May 25, 2012

So, part of my appt with Dr Rheumy was getting my routine blood work done. The MGUS levels are all staying pretty normal, thankfully. No one’s too worried about that right now (yay!).

 

But, as you are all well aware I’ve been in a depressed funk for a while and OMG THE PAIN. So, she ran some tests to look for other issues.

 

And found one. FUCK!

 

You know vitamin D is important shit, right? I knew it prevented rickets, but otherwise wasn’t too sure what it was doing. Turns out it’s a hormone, and is involved in all kinds of body functions. If your vitamin D is low you can’t absorb calcium, or lose weight. And if it gets too low you’re at risk for organ (especially heart) failure. So that seems like a big deal. Turns out I am “severely” vitamin D deficient.

 

How severely? Well, “optimum” levels are 50-80. 30 is the lowest possible “normal” reading. Organ failure and rickets concerns start at 5. Mine is a 6.

 

Spent the morning in the sun with the small people. Have giant ass supplements to take (prescription strength vitamin D, what, what). Am probably going to die anyway. (being melodramatic…)

Out of Control March 26, 2012

Right now, my life feels out of control. As in I have no idea where to start to get back on track. Or even where the track is. I’ve been drifting. Treading water. Lately, I’m just drowning… So, I need to get some goals in line and get my lazy ass in gear!

 

•  House: My house is a mess. MESS. Embarrassingly messy. This is not me. Don’t get me wrong, I hate to clean. But, I’ve always had one of those houses where a quick trip through to pick up the out of place stuff was all that was needed to prep for company. Then I had a baby. And that baby came with stuff. A giant truck load of stuff. And it ate my house. And it overwhelmed me. Now my kitchen floor needs mopped, my toilet is gross and the laundry monster is threatening to suffocate me in my sleep. Unacceptable. So, what am I gonna do about it? Well, it is spring break… I suppose I need to clean this shit up. Then get myself a little plan together for keeping on top of it.
• Food: I haven’t been food shopping in two weeks. Don’t get me wrong, we still have food left from the last trip. I could probably feed my family for another week or two without going to the store. Not wholesome or nutritious meals, but meals… Yeah, I need to make a shopping list and get my arse to the store.
• Health: Pinterest be damned, I have to do a juice fast. At the end of my 10 day-er last summer I had lost a bunch of weight and my RA was starting to feel better. It was working. I need to get back on it. Give it a couple of months. Holy hell, if I could lose 50 pounds (200′s I could be in the 200′s!!!) and get my RA better in control my energy would SKY ROCKET. I need energy. I know juice fasting brings me energy. My hang up here is just how much I enjoy yummy tasting food, and the comfort of a nice warm, filling meal. But, I need to put that on the back burner. Temporary pleasure is so much less important than improving my quality of life right now. Those temporary pleasures will ultimately decrease my QOL, a juice fast will improve it. I’m gonna do it. I am!
• Marriage: Yeah, so RPL and crazy families and conflicting parenting styles… not so good for the marriage. We haven’t had sex since we found out that Nora was miscarrying. That’s been like 5 or 6 weeks now. Honestly, I’m in no rush. I was going to say it’s the last thing I want to do right now, but then I realized I probably would rather have sex than properly clean my house… Still this is one of the longest stretches we’ve ever gone and typically for us, no sex is not a good sign. We fight almost every night. He’s driving me crazy. Between saying just stupid shit about current events that don’t even affect us, to totally killing me on the discipline front to making shitty-ass little comments he is driving me bonkers. I don’t know how to turn things around. I don’t have an action plan for this one. Maybe fixing the other things will help it?
• My Appearance: The longer I’ve been out of the work force the rattier my clothing has gotten. My mom infused my wardrobe with some of her clothes she doesn’t wear, but… it’s still not quite a wardrobe anymore. I spend most of my days in pajamas, my shirts have stains on them and nothing fits right or matches. On top of all that, I need a haircut, my nails are a mess and my eyebrows look like Huxley’s. Good grief, why would he even want to have sex with me? Anyway, we don’t really have the cash to invest in how I look, and it’s been low priority to me (obviously), but I’m starting to think maybe it I spruced me up a little I might be able to kick this depression faster?
• Homeschooling: This isn’t so much school as just doing activities with the littles. I started wanting to do something to enrich their little brains everyday, or at least a couple times a week. But, I don’t. I need to get with it, though. Even though the TV is valuable for a small bit during the day, I’m finding the more out of control I feel, the more TV we’re watching. Less TV more activities!!!
• Business: Actually have a plan here! Am going to focus more on patterns. This will hopefully result in more cash… Have 6 more hats to ship, then will be caught up.
• Writing: I have so many ideas!!! Must make myself write everyday.

OK, I think I feel better. At least have the start of a start of a proper to-do list.

Updates & Whatnot March 15, 2012

So, I promised you an update on the situation La Diabla. Plus, you know, there’s other stuff going on, too. The world did not stop moving just because my body killed another innocent baby. Weird how that happens.

 

- La Diabla: So, G took Baby G over to Aunt C’s a couple of times on Sunday morning when I was in the throws of 1st trimestery zombieland. His Aunt C called La Diabla so she could come see the baby, too. Grr… Now, we have long agreed that she will not dictate how we live our lives. For instance, if we are out in public and she turns up, we will go on about our business. But, to me, this is a little different. I feel he should have left. Not because I wanted him to (although the thought of that troll touching my baby makes me want to hurl), but because he told her that he wasn’t interested in seeing her and that he didn’t want her around his son. If you’re going to say things like that, you need to back them up. But, that’s his business. He made it sound like he was unhappy that she turned up and blah, blah, blah, then… did the same bloody thing the following weekend. He’s not being honest with someone, and I think it’s himself. So, I cannot tolerate this whole pretending that nothings happened nonsense, nor do I want that unrepentant bitch anywhere near my child. In other times I might have played it cool, but now that Baby G is involved I actually stood up for my family and told G that she is NOT to be around my son. Period. If she desires a relationship with any member of this family (other than G, I have no right to but in there) then she will agree to family counseling. No counseling, no relationship. She’ll never do it. But, I figure if she does, we all benefit. If she doesn’t, I am able to say I remained willing to make things work, but that she was the uncooperative one. I’m not normally one for games (and I do think that is kind of a game, because I know she won’t ever agree to family counseling), but desperate times…

 

- Once again, I am so pissed that things have worked out this way. Because even though I don’t really like my MIL, she could be really useful. Not only that, we could be friends of sorts. She would be a good one for taking the kids out and couponing together and stuff like that. I wish we could have that kind of relationship. That’s probably why I set the condition of family counseling. I know it’ll never happen. I need to not even let myself think it. But, I do. I wish it could be like that. I hate that I wish that. I wish I could really hate her as much as I want to.

 

- My Health: Sucks. My RA is out of control, I’m in so much pain. I wish I could just feel good. Or, even OK. But, as it is, I’m always tired and achy. My feet hurt so bad and my left ankle is nearly unbearable by bedtime. So, I asked Dr. Rheumy for new drugs today. Strong drugs. Drugs that we’ve been avoiding because we’ve been pro-creating, and now we’re not. She gave me drugs. I am pleasantly stoned right now. I wouldn’t say I’m in much less pain (not that I expected to be on the first day), but, who gives a shit? I’m nice an relaxed. This isn’t really what I want, though…

 

- So What the Hell Do I Want?: Yeah, another big topic around here. Apparently I need goals. Not just for me, either, for the whole family. We need to stop drifting this way. Now that we’ve decided to actively prevent pregnancy, it feels like a whole new world has opened to us. More on this to come.

Tossing and Turning December 15, 2011

I’m sorry that you guys only hear the bad stuff from me. These days it seems time is slipping through my fingers and documenting the good times/feelings/what-not seems to be taking a back seat to, you know, living. But since it is in the dark AM hours, and I can’t sleep, and I’m too lazy to go get another bag of Chex Mix from the basement, and I can’t be bothered to adhere to the rules of decent sentence length, I figured this would be a good time to throw a quick state of the Minta address out there. Oh look, bullets!

 

• The Babe: Is 10 shades of awesome. I love that kid. This evening he told me “EAT!” and I said “What do you want to eat, buddy?” You know what he said? I’m not even kidding (although I don’t know if he was or not, probably not, though.) “Food!” Yeah, he talks like that. He gives real kisses. To everyone but me. Sometimes me, but Daddy and Ladybug are constantly getting the sugars. I am jealous, especially because at 15 months he has decided that the boob is dead. But those sugars! They make my heart soar. Have I mentioned that I love this kid?
• The Babe’s Health: Pretty good, but he has had an  official asthma diagnosis, which brought with it a daily inhaled steroid, which brought with it thrush of the every-damn-where. I assume it’s from the steroids, although mama has the thrush every-damn-where, too. Since the new inhaler has come on the scene, we’ve had no major URI’s, though! We had three in a month prior to the inhaler.
• My Health: Ugh! So, the RA = Bad. Left ankle still a hot ass mess and general feeling of assiness are keeping me down. The weight = bad, because I’m doing things like eating a bag of Chex Mix at 1am. Basically, I’m getting that falling apart/dying slowly feeling again. So, it’s time to get the fuck off my ass and fix it!!!!! I mentioned the head to toe thrush, right?
• The Family – Minta Edition: Land mine! Let’s see, my sister has proven once again that she is the center of the universe. My dad disagrees, because he is, in fact, the center of the universe. My Mamaw has been diagnosed with Alzheimers and my uncle’s wife is trying to shut her up and never let her leave the house. Lil C is having some crazy jealousy/regression issues.
• The Family – G Edition: He has been in light contact with Aunt C and has proposed a “truce” on Christmas ala WWII. I have proposed “Hell to the mother fucking no.” In all actuality, he is probably going to take Baby G over to Aunt C’s house on Christmas Eve and allow his mother to visit over there. I am not a fan of this idea, either, but am picking my battles. He says he’s going to call her and Aunt C to talk to them prior to Christmas. I’ve tried to help him organize his thoughts, but we’ll see if he uses any of my suggestions…
• My Jobs: Yes, jobs! Ya’ll know how I was waffling about obtaining gainful employment? Well, my Etsy shop kind of took off So, that’s pretty awesome. Speaking of (and I know this isn’t really the place to do this…) any mommy bloggers looking for free hats, who are willing to write a post showcasing said free hats, please let me know! Baby Hooked Boutique is looking for marketing partners. Other jobs? Still assisting my mother and nanny’ing H’s kiddo’s.

I think you get the gist of things. I think I shall head to bed and attempt to get some sleep. You know, today is my 28th birthday, and we 28 year old’s need our beauty sleep.

The Juice Fast: It Begins September 4, 2011

Well, folks I decided to undertake a juice fast to help combat the RA and my not so great report from the rheumatologist this week (liver enzymes elevated, drugs killing me slowly, and they aren’t even the fun kind that get happy stoned)… So far so good! I even resisted getting food at a restaurant on Sat after HOURS of shopping at Jungle Jim’s (OK, not really, it just felt that way because my ankle hurt so bad and it was so packed).

When we got home from the grocery G Jr. had his dinner:

See delicious selection of solid food… Except the spinach. Spinach, it has been decided, shall only be consumed covered in cream and curry.

And I had mine:

What’s that you say, looks nasty squared? You’re right.

The color of my juice put in mind of something. A childhood memory, maybe…

Yep that’s it! Tasted about like that water, too…

You’re brave, Mama, I’ll give you that! Not for drinking that nasty juice, but for swimming in that green water!

Quick Update on the Health Front November 3, 2009

Saw the RA doc today. She’s wicked pleased that the immune suppression drugs (Enbrel, Plaquenil & Prednisone) are helping with the RA and hopeful that maybe they’ll help with a future pregnancy, if we decide to go there again. She attended a lecture specifically for getting info for me, which made me feel all special. The hubs and the mom don’t like her because of Cancer Gate 2008, but I like her. She’s straightforward and sweet and involved with her patients. I though it was especially funny that she considered my 5 pound weight gain to be perfectly normal for the drugs I’ve taken and life events of  the year. She just checked it right off, like no biggie. Of course, at my size 5 pounds could very easily be water, anyway. (But it isn’t… I am putting on weight which is bad and needs to STOP.) Also, I love that she was outraged that bariatric surgery was the “novel solution” for the womb of death!

 

So, she ordered a shit ton of blood work, including a re-check of the M-proteins. So here’s what we have coming to a lab near you (well, actually me):

• C-Reactive Protein (auto-immune std blood work)
• CBC with Diff (auto-immune std blood work)
• Comp Met. Panel (auto-immune std blood work)
• Sed Rate (auto-immune std blood work)
• Serum Immunofixation (MGUS semi-annual test)
• Serum Protein Electrophoresis (MGUS semi-annual test)
• Urine Protein Electrophoresis (MGUS semi-annual test)
• Urine Immunofixation (MGUS semi-annual test)
• Drug Monitoring / High risk meds (auto-immune std blood work if on biologics)
• Rheumatoid Arthritis (no idea what this is for tee hee, I’m a smart ass!)

So, that’ll be fun in the morning. I better start drinking now, by my count that 8 vials of blood and a hefty bit of urine they’ll be wanting.

 

In other news, there is no other news…

On the hook again October 5, 2009

So, it’s 1am and I’m still up. Because I have the heart burn, and also there are incredibly shitty movies on tv which must be watched. Really it’s all about the movies.

Also, I’ve been crocheting my ass off. I’m making the C’s each a hat, scarf and mittens. I haven’t crocheted in about 6 years because of my RA. I used to crochet all of the time. As a matter of fact the last thing I crocheted was a baby blanket for the Big C (which my sister lost). It was nice to get lost in something that I hadn’t done in so long.

Otherwise the weekend has been fine. Not great, but not awful. Fall fun with the boys, fires in the fireplace, hot tea and laundry. Always, laundry. Wait, I forgot something rather important… Oh, yeah Who Dey!!!! My Bengals were on it again.

Oh, well, time to pop some pills and try to sleep. Sorry for the poorly written disjointed thoughts of insomnia!

100th Post August 4, 2009

They say a writer finds their voice at about 100,000 words written. If that’s true, I’m half way to finding my voice on this blog. I’m pretty jazzed about it!

 

OK, but the for realsies are more important right now… I saw the rheumatologist today. For the first time since I got pregnant, and subsequently fell unpregnant. She had some insight, which basically boiled down to “Hello, I’ve been telling you to take more drugs, why is it that you don’t listen? Also, remember how I told you to take iron? I wasn’t fucking kidding!”

 

OK, she didn’t say it anywhere near like that. But, she did talk me into more drugs. Her argument: NOT taking drugs that could help me feel substantially better hasn’t been helping. It’s possible that taking the drugs will help. It’s more possible that whether they help or not I will feel better. It’s almost impossible for them to make things worse. She makes a good point. So, I accepted the scripts for Plaquenil (lupus anticoagulant antibodies) and Enbrel (rhuematoid arthritis).

 

** Warning: I’m about to go all kinds of med geek on you, maybe, but I think so **

 

I’m hoping for big results from the Enbrel. It should do great things for the RA. Should… But, in a lot of the research I’ve been doing (please remember I.am.dork) it appears that there is a link between insulin resistance/obesity and tumor necrosis factor alpha (TNF-a). TNF-a is what the Enbrel is designed to block. So, I’m hoping if not for some weight loss, at least some improvement of insulin symptoms. It seems like all of my issues are cyclical. I wish I knew how to break the cycle. Example) PCOS causes Insulin Resistance which causes Obesity which raises TNF-a which causes Insulin Resistance etc… TNF-a also increases inflammation and RA pain, which reduces the ability to exercise or even move or prepare healthy insulin fighting dinners. Don’t get me wrong, I know it could be worse. My MGUS could morph into Multiple Myeloma (my worst fear, btw, that I get diagnosed while pregnant), I could get hit by a truck and die etc. Lots and lots of worse things are out there, and I GET THAT. What I don’t get, is why I’m stuck in my position. OK, all done with the pity party (not REALLY, but quitting anyway as it is benefiting no one).

 

So, all in all I’m calling this appointment good. I really like this doctor. I know my family harbors ill will because of the MGUS vs Multiple Myeloma scare back in February, but that wasn’t her fault. She can’t be help responsible for my bad blood.

 

I am kind of back to the question of whether or no it’s fair to pass my bad blood on, though. I have so many health issues. Some of them are kind of bad, too. Like the MM risk and the RA. Is it really fair to knowingly risk giving these diseases to someone else? I don’t know. More often than not I take the statistics to heart and realize the chances are so slim for the MGUS/MM. As for the RA my Gran had 6 children, of the 6 four developed an auto-immune disease, only one was “bad” (i.e. chronic & life affecting). My Dad, the “bad” one,  has three children, two of us have auto-immune disorders. Only one of us is “bad.” So, I do stand a chance of passing down RA or psoriasis to my child, if I ever have a child. I have a second cousin on G’s side who’s family has no history of auto-immune disorders (on either side) who has RA as severely as I do. I could adopt a child with RA, I could be perfectly healthy and my child could have RA. NONE of my cousins (descendants of Gran, pgm with RA) have an auto-immune disorder. Of the 20 kids who were “at risk” 2 of us realized the risk. So, it’s hard for me to see that as no risk, or negligible risk, but I have to realize that while the risk is higher than the general population, it isn’t much higher.

 

Sorry about that trip to tangent land. That’s just something I have to work out every now and then.

 

Back to recap… appointment went well and we may have a new method for solving this miscarriage curse.

It’s Sunday Night, Do You Know Where Minta Is? June 21, 2009

She’s at work! Again! And she really hates being at work. Son of a bitch!

So, I’m importing data and thinking to myself… “Self, if you could be/do anything you want right now what would it be? What is it that you’re so bitter about missing all the dang time?”

Good question! I keep pissing and moaning about change. But, change for the sake of change doesn’t always = change for the better, right? I guess I should interject right here and put myself out there a little so ya’ll understand what I mean. My RA is very flared up right now. I need to get back on my Enberel or something, because steroids alone are not doing it anymore. As a matter of fact, steroids are starting to add to the problem. Because I’m in such pain, I’m not doing very much other than sit on my ass and work or sit on my ass at home. Not cooking, not cleaning, not walking the dogs. I’m also very overweight, and severely insulin resistant. I’m not cooking and going to the grocery, so I’m eating mostly crap that makes me more sick. Which causes weight gain (or at least prevents loss) and increased insulin = increased inflammation.

You also know if you’ve read this at all recently that I’m very depressed. And just to add to the fun, I’m starting to develop additional symptoms that may be from other things, but have increased worry over having developed Multiple Myeloma. Now, I know MM is NOTHING TO MAKE LIGHT OF. Trust me when I say that having MGUS raises this concern and although there is a 75% chance I will never develop MM, there is still a 25% chance that I will, and it scares me. It especially scares me when my fatigue goes from, don’t want to do anything to can’t do anything. It also scares me when my ribs and back start to hurt. Worst of all it scares me when I get the signs that my kidneys are struggling (I am retaining a lot of water, my kidneys hurt and my urine is cloudy) harder than normal. I am fully aware, though, that worrying over MM may be away to “escape” from the ever present RA and infertility worries.

So, a lot of worries and health concerns. I’m feeling really bad most of the time. I spend a lot of time at work not really working because I’m too tired or can’t concentrate. Over all if I had to rate my quality of life (1-10 with 1 being least and 10 being best) I’d give it a 1. So, again with all this pissing and moaning and bitching about QOL, what is it that I want? What would I rather be doing?

All of that to say, I started working on some goals…

1) I want out of my job by 6/2010. Not just my current employer, but my job.

2) I want to have enough energy to come home from work, and cook dinner and clean my house. I’d love to be able to add walking the dogs to that, but if I can cook and clean that’d be a good start.

3) I want to be able to wear my wedding rings again. I can’t wear them now because of the edema in my hands and how suddenly it can come on.

4) I want to be able to roll over in bed, or sneeze without wishing I could just die instead.

5) I want to be able to take the nephews to the zoo, or amusement park without it nearly killing me, and I want to be able to ride rides with them.

6) I want to be able to take the boys swimming after work.

7) I want to want to get out of bed in the morning.

So, goals established (sort of). Now I need to get an action plan together to make them happen.

Updates of a nefarious nature February 13, 2009

OK, not really, but I challenged myself to use the word “nefarious” in real life today, so there you have it.

I did hear back from the new RA doc’s office today. Here’s how the call went down:

• Unidentified Nurse: Your lab results show that you’re very anemic.
• Me: Really? I think Dr. W already told me that, though… There aren’t any updates that say, I haven’t been told about, yet, are there?
• UN: Uh… no?
• Me: Uh…no?! What about the results of the serum immunofixation test? Do I have the monoclonal immunoglobulins, or not?
• UN: Well, the doctor didn’t write any notes about that, so I guess they’re normal
• Me: Fax me the lab report, number is ###-###-#### *click*

Well, maybe I wasn’t THAT rude, but I certainly wanted to be. OK, I was kind of rude, but COME ON. I already knew I was anemic. It’s one of the diagnosis codes from my last visit. Sure, I’m concerned about the anemia, but I’m just a little more concerned about what is causing the anemia. I didn’t get the lab report though, but that’s a whole other story.

So, here’s what I’m assuming… the definitely cancer came back clean. Which is good. That means if it’s cancer (as it still could be) it’s not far progressed. It also means more than likely I have the monoclonal gammopathy of undetermined significance (MGUS). So, I attended some Google med-school classes and learned the following…

MGUS is diagnosed if Mutiple Myeloma is ruled out by certain conditions being met:

• M Protein is less than 3 g/dl
• Less than 10% plasma cells present in bone marrow
• No Bence-Jones proteins present in urine
• No Lytic Lesions (wholes in bones)
• No Anemia, Hypercalcemia or Renal Failure

Now, I’m thoroughly confused. I don’t meet all of the conditions above, seeings how my M Protein spike and anemia are what started this whole nightmare. There’s been no talk of testing urine or bone marrow.

So, now I’m thinking I need to get all of my test results and take them to my family doctor and get her opinion and interpretation. The nurse who called, obviously wasn’t prepared to answer any questions. Meanwhile, I’m ovulating and am so confused. I am so confused.

Earlier in my life I would just take doctors at their word. I’d assume they knew best and would order whatever tests were necessary. Then, I spent several long years being told that my daily pain and fatigue were all in my head. Then, I spent several more long years being told that timing was the reason I hadn’t fallen pregnant, yet, but just wait it’ll happen any minute. So, I don’t really trust doctors as perfect all knowing beings any more. I trust that they are doing the best they can with what they have, just like everyone else, but I’m quite sure that if I need somebody looking out for me, it needs to be me. So, I research and ask questions. I get really pissed though when doctors give me a small piece of a large, complex, scary puzzle then don’t follow-up with all of the facts needed to put the f’ing thing together.

OK, rant over. Not much else to report, it’s just been another scared, lonely day.