Calming Songs

I have songs that calm me when I am freaking out. Not gonna lie I have quite a few things that I flip out about. It really isn’t that hard to get me to reach my flip-out point is what it comes down to. I just don’t have a big filter and I am already dealing with so much internally that I feel over loaded as it is. Add in that everything I see hear and touch I actually feel. I can’t block out anything thing sensory very well. Eventually it all gets in. Pretty nerve fraying right?

Well I have a few things I do when I am about to flip out or already am flipping out.
No, that’s a lie. If I’m already flipping out I am not in anyway going to slow down the coming tidal wave. But somehow BFG figured out that if he puts on my calming songs then I start going through my calm down motions automatically.
I use these songs consciously for a number of things:
When I get antsy at doc apps (white coat syndrome), or get antsy before going out (social anxiety), PMSing, Frustrated with cleaning, etc.
I had never thought to just use them as a general calming technique, clever fellow;) These songs always work, other songs come and go.
Do You Believe In Magic- Lovin’ Spoonfuls
It’s Alright- The Impressions Curtis Mayfield
I’m gonna start posting links to the songs I’m listening to lately. I think that music helps set up the atmosphere of your life. Sometimes we set it up to reflect the mood we feel, but I find music is an amazing tool to use to set up the atmosphere I want to create and thus the mood I will feel for the day or moment.

When the Results Aren’t Good

I’ve been playing phone tag with the OB’s office all day. They usually just leave a message. This time her message was to call back every time. I signed something at this particular office saying they could tell my info to me in a voice mail. They normally do! Telling me “it’s a little abnormal we want to see you again,” or “everything’s great, have any questions call,” whatever. But this time it was just back and forth. Come on guys, can you be more obvious?! If you are willing to leave a message telling me I have abnormal results then I’m going to ASSUME this particular situation is worse!
Well I got the call. Turns out the weird suspicions I’ve been having were right. I’m premenopausal. I’m 28 yrs old! It’s from the adrenal function issues I’ve had from long-term steroid use. They’re putting me on meds, oh but don’t worry, it’s all very normal (sure normal in women in their 30s or 40s to need this or just ME apparently) Blah Blah Blah she explains… All of these months of trying and I haven’t even been ovulating. None of it mattered. It made me cry. It really isn’t that bad. many women go through mild fertility assistance. But it just felt like one more thing my health was trying to take away from me.

I’ve always known I’d be a great mother. No matter how sick I get, I can take care of a kid. But now I might not have that option? For real?! That seems so surreal. But I guess the good thing is it’s still a might. We have a number of options left, starting with the Clomid I start in November!

It can be difficult to establish in my own head how I feel when I get bad news to do with my health anymore. I feel as though part of this comes from every few months learning something else was wrong with me for most of my life. Maybe I learned to just not cope? Perhaps I cope so well it flows over me? I think it is the case really. I go through all of the stages of coping so rapidly that most people don’t notice I had a problem to begin with.

**This does NOT extend to any other area of my life**

Instead this is why when I do encounter something that I can’t just let flow through me and go with it… I don’t know what to do. I shut down. I could be pouring myself into preparing for the eventual baby (which I have been doing for months), but I have such a hard time mustering the hope right now. I spent a lot of spoons/energy on hope these last number of months. I’ll figure out my way to cope with this, until I do, I remind myself I just haven’t found the next great thing yet.

Are We Really PLANNING For a Baby!?!

I’m trying to wrap my brain around what my husband and I will be doing over the next few months. The plan will lead to our lives changing for… well forever.

 

I haven’t had a chance to really process the idea that I may not actually be able to have children if I wait, like I initially planned. I mean I planned to have my college degree first, hell even a dog!! But the baby is coming first if I want that option. Unless I’m willing to risk not having it…

 

From the persecutive I have of all the options in my hand right now, the only spade I have to play right now is baby first college after. But boy is that a scary persecutive. Especially since society claims the “proper order” is very specific, of which I won’t be following remotely in this situation. I think what scares me most is knowing this is something I am ready (as you can be) for, but I don’t know if my life with this guy is ready for a baby on top of the complications of his mental disorder and incorporating it into taking care of my health and a baby.

Is This Nervousness?

For what seems like ages now I can’t seem to focus on any one thing. I have noticed that it’s getting a lot worse every day that we get closer to actually starting chemo. It’s almost like until they actually do the first IV infusion, I might get a phone call from the doc saying, “Oh! After the recent blood and scans we like your numbers” or “We decided this med will be a better option for your situation and, of course, less intense on your system.”

But the closer we get to the day (two more), I realize I am doing this. I AM doing this. I don’t know what “this” is, it may be nothing to me or I may be miserable, like when I was on Methotrexate shots. I DON’T KNOW!!!  That’s the biggest problem really. I have a huge issue with dealing with unknowns. I’m a curiosity-kills-the-cat kinda gal. I need to know.

Half knowledge about something–especially my health, my own body–half knowledge is almost physically painful for me!

My therapist says it is totally normal for me to not really process what I am going through until I’ve had a few infusions and am actually coping with side-effects consistently.

Giving me this much time before it starts is evil, but also great. I really needed this window to get the chance to prepare for anything that might happen during my more intense course of treatments; however, getting this time is also giving me the chance to get my imagination going. Think creepy Twilight Zone theme music. I am, of course, giving myself the chance to think of the weirdest negative things ever. I don’t think it’s the typical fear stuff, at least not yet. I am probably blocking those fears still because they are too big. Instead I am choosing these ridiculous fears like the end of my social life and the failure to finish the hours of classes in the timeline I have built for myself. :/

These made-up possibilities that keep popping into my head throughout the day pass the time for me. The stories are sometimes positive and make me smile, but more often than not the ideas make me cry too (hormone shifts from the fertility procedures? or the fear that the reality makes dreams impossible?).

It’s the little bit of denial I’d like to think of as hope that I am hanging onto. Hanging on as the reality gets closer and closer by the day. Maybe I can just walk away and forget the appointment! So many fantasies I can create in my head. In the end, the reality is, that which I park my car in front of and unlock the front door to walk into.

Eating & Weight

I’m losing weight. Which is weird, because I’m eating way better food. As in healthier food that is packed full of nutrition and yumminess. No, fast food! I’m also eating more often and I would think that would make me gain weight. My BF says it’s that it is the result of my metabolism beginning to work properly. I think he’s right. My metabolism has always had trouble working correctly, or my digestive tract, or whatever–something, not something, I don’t know. Point is:

I need to eat even more, don’t you think?!  Chocolate here I come!! Woohoo!!

Birth Control Finally Under Control

Wow! It’s finally regulated! I’ve been cautious in saying anything right away, I didn’t want to jinx myself. But my BC seems to have actually started working correctly. Minimally annoying break through bleeding and my period comes when it’s supposed to!! woohoo!

I would like to think this is due to me focusing on taking the pill on time or switching to a hormone level that agrees with me… thing is… I’m pretty sure, that when it comes down to it, that stuff was irrelevant.

So what is it that has made the difference? For years my endocrine system has shut down due to some medications that I have had to take. For several months now I have been working with my doctors to try and get it working again and it seems finally to have kickstarted itself. As a result, my endocrine system is pumping out my sex/stress/coping juices on its own and that, I think, may be the major factor.

Unfortunately, I have also had an arthritis flare-up (RA). I hope my period did not trigger it since that is why I started taking birth control to begin with. Not just a little flare-up mind you, a major immobilizing flare-up. Going back and forth from my knees being so stiff and swollen they won’t hold my weight to my elbows, wrists, and fingers being so swollen and stiff that I start referring to myself with claw-like features;)

Birth Control

Rheumatologists at the highest level still debate as to whether or not hormones are affected by Lupus. I, having had the auto-immune diseases through puberty, would have to say I fall strongly on the side of  YES! My disease is absolutely affected by my hormones! It blows my mind that an argument against hormones being affected and affecting my auto-immune conditions can be made!? I have heard the argument that medications we are put on affects our hormones, which many do, but I wasn’t on those meds during puberty and boy would I beg to differ that meds are the only possibility.

For one thing I was sick enough during puberty that I was unable to maintain healthy weight among other issues, causing me to get my period quite late compared to the other girls around me (end of my Junior year of Highschool). I remember not being able to get out of bed from an arthritis flare-up for at least three days before my period, all during it, then often the flare-up would continue for a while after my period ended. My parents and I asked the Rheumy I was seeing at the time if maybe the timing of the flare-ups could be related to my period. He exclaimed that there was no link to hormones and auto-immune diseases and hormones wasn’t his area. But then, this Rheumy also thought my razor burn on my legs from shaving was a sign of Hypertension.

Thank goodness my parents taught me to do research. They also always did their own research about my health stuff. I determined that I wanted to try Birth-control and my parents supported the idea completely. I had to be my own advocate if I was going to choose an adult decision like pushing for or against a treatment. My parents have given me choices in my own medical care since I can remember, they are always there as my safety net, but my parents wanted me to be able to understand how to deal with my health issues for myself when I was an adult.

So with my Momma beside me to support me; I had to go into the doctor and say I disagreed with the arguments I had been given against taking the BC pills with my Lupus complications and say I wanted to try being put on a Birth-control pill anyway. At this point my doc, knowing me pretty well, agreed to try out BC but gave me the lowest dosages available on the market, these have a lower risk of blood clots, with my specific Lupus issues blood clots were something worth worrying about. So we found a middle ground.

I got to try out my theory about Birth-control. It worked! More than a little bit. Within three months of beginning birth-control I stopped getting a major Flare-up with every period! By a year into my BC I no longer got a flare “worth taking note of” before or during my period!!

Now I see a Rheumatologist who believes so strongly in the connection between hormones and our diseases that she for a time shared an office with an Endocrinologist! She said when I asked about it once, that it only made sense at the time to share an office building as often as they shared patients!

I’ve taken a few different BC pills at this point in my life. I always seem to end up back on Ortho-Tri-Cyclen-Lo. This seemed, at least up to recently, to be the hormone levels my body preferred. But recently I started getting symptoms that made my OB/GYN decide to try switching me to a higher dose Birth-control pill.

Ever since I’ve switched to this new BC I have started bleeding at the end of week two and don’t stop until I’ve started my next pill pack. I am going to go insane! I have become so anal about taking the BC pill at exactly the same time everyday. I some how have convinced myself that taking this pill an hour later than when my alarm goes off is absolutely the issue causing all of my new symptoms!

I know that when most girls get their birth control pill from their doctor the doc explains how to take it. Most docs will tell their patients that the pill has to be taken at exactly the same time everyday. This isn’t entirely accurate… Now I totally agree with the reasons why doctors say this, don’t get me wrong!! But I did the research myself, asked enough annoying questions until the doctors would actually answer them, that I have learned the more accurate points of taking BC:

The biggest reason we are told to take the BC pill at the exact same time daily is to help us remember to take the pill regularly by making it a routine. This is smart, as most people aren’t used to taking a pill daily let alone multiple pills daily like I always have;) How long of a “window” you have before a pill is considered a missed pill depends entirely on each pill! With some Birth-control pills you have all the way up to 12hrs before the medication manufacturers would consider it a missed pill, many (if not most I’ve researched) you have as few as 4-6hrs before you can consider it a missed pill, very very few give you such a narrow window of 1-2hrs. I have never been on one of these short windowed pills, but I always try to make sure that when my alarm goes off that I make my way toward taking my BC pill. This way I know I am taking it within the hour anyway, no reason to not maintain the doctor defined routine even if I do have a larger fail-safe window. If you are on a Birth-control pill and don’t know for a fact what your window is, then in my opinion you are taking a silly risk if you aren’t swallowing your BC pill at the same time daily.

Having developed a routine around taking my medications, BC pill included, I of course thought I was already being anal about the timing of my BC pill… so now my need to take the BC pill “on time” has become slightly obsessive… You try bleeding for three weeks at a time!! I restate myself from earlier, I’m not going insane over this BC nonsense, I’ve gone insane.

To top it off the blood changes throughout the two-ish/ three-ish weeks that I bleed. I know it has to be something, but being the less-then-sauve-with-computers gal that I am, I have yet to figure out a way to ask Google and actually get relevant links. Sometimes I wonder if that isn’t my lack of computer skills, but rather no-one else deals with it, that it’s just another except Izzy. But I know that’s bullshit. I know there have to be a lot of women dealing with this that can relate. My problem isn’t that they haven’t dealt with it, but rather that they don’t have the specific circumstances. I wonder if there is a whole other set of women that are experiencing this who do have my circumstances (Lupus, endocrine malfunction, etc.)? But I just haven’t managed to find them!

I already know I’m not iron deficient. I know I’m taking the BC pill on time. I know it doesn’t interact with any meds I take. I am wondering if the higher levels of hormones aren’t reacting well in my body? Also perhaps the different hormones in this pill versus the last pill I was taking are affecting my body? I need to get tested again (as in go to the doctor, that’s a duh!) and research endocrine levels in relation to hormone release, and in relation to timed and controlled hormone levels, etc. to see if it is at all correlated!

 

6/28/13