There’s Supposed To Be a Baby In My Arms

They always say that you should take as long as you need to grieve. Yet at the same time society expects you to be over it in a month, saying a month feels like I’m being liberal. Yesterday was my due date. Did no one else remember or did they just not know what to say? I don’t blame them. I’m not sure I would have known before going through it.

The day of the due date, that would never be real for me, was almost completely structured out. All focus going to someone else. Our darling Deer’s birthday weekend, always a special event. My mind was distracted! So many people to talk to and laugh with. Though it was certainly not her intent Deerheart just made it impossible for me to feel alone that day and the days leading up to it. Without it ever coming up in a discussion, because she’s amazingly good at making everything about her.

I lost the baby in November, I should be moving on. Figuring my life out without children now, right? But I haven’t gotten there yet and I’m not sorry. I’ll get there when I have the strength saved up to power forward. I just don’t have that built back up in me yet.

But now the weekend has ended and I’m back home and back to my own thoughts and I have one single image/idea intruding into every thought and action I do. There’s supposed to be a baby in my arms right now.

My Britney Spears’ Moment

Remember when Britney Spears buzzed all her hair off and went totally nuts for a while? Well….

Yeah I know, I shaved my head at least 8 months ago at this point. But the shaving my head isn’t so much the imagery I’m trying to conjure, more the going totally nuts part. Maybe more specifically, an obscenely short lived marriage. Mine made it 7 months, how about you? Two weeks shy of dating for 4 years and a few months shy of being best friends for 8 years. I walked away from my marriage. 

I walked away from my future completely. It’s not like I don’t understand that I can get a new future. Believe me, with every diagnosis I have to reinvent parts of me to move forward in my life. But I never thought this would be a future I would walk away from. I had a husband who despite being dreadfully human; loved me and tried to take care of me, family that is ALWAYS there, professors who were possibly willing to work with my health conditions, an actual decision about what I want to do for a living (if I can hold a job that is), even knowing I am infertile I was comfortable with my next steps I was taking to make a family. I had every part of my life moving forward. Yet somehow I was still drowning and I hadn’t seen any shore yet. I’ve realized, that when it came down to it, I didn’t have any of those life thingies on lockdown. Starting with what was inside my own head all the way to what was going on with him in front of my eyes.

He needed help. Instead of helping himself, he placed me in the role of a parent practically, forcing me to carry him as he ever so quickly was spiraling into the Doldrums. Holding him up was like trying to keep the sand from falling between your fingers after a wave splashes over your hands. Not to mention my hands can only take so much before they cramp up;) –Spoonie joke!

He was so very scarily violent before medications. Only a few of our friends had seen him like this and never any of his family. The friends who had to sleep over in blankets outside my locked bedroom door to keep him from taking the door off it’s hinges to get to me while I was sleeping. Friends who would stay for days, because it wasn’t safe to leave me alone with him or him alone with himself for that matter. But once the medications started to work, he became somewhat functional. Someone who could even-out from his erratic emotions and behavior at times. He became a friend again. I still walked on eggshells, but I didn’t have to have protection outside the relationship anymore.

He prevented me from being able to be me, when the person you are with forever is supposed to strengthen the things that make you you. That was still a problem.

I’ve known I am polyamorous since I was in High school. I wasn’t sexually active until after High school, this gave me a number of years to understand what I felt about this. I knew part of what I was losing myself in with husband was denying the poly part of me. (I must point out that marriage does NOT affect the ability to be poly) Husband and I had always had an agreement that we would be poly, (I, already being so when he met me, and he was going to work on it for himself) but we needed to give each other some focus for awhile as per my policy with every new relationship. Awhile was supposed to be months and it turned into 3 and 1/2 years. Not kidding. With my health issues and husband learning to be my caregiver throughout the flareups and downs, his mental health issues coming to the surface, me having to go on Chemo, and our struggles with becoming adults in the outside world; there was never a good time to start moving our relationship into poly. But he did finally make a deadline after he proposed. I told him I had to be able to start moving into poly life again or I had to consider he wasn’t who I was supposed to be with. I thought that the marriage was a wonderful time for him to understand that he was my primary and another person would never be the reason he could lose me. He seemed to feel this would cement his “ownership” of me. I unfortunately didn’t realize this was how he saw it at the time. He set a date for a year after engagement to start opening the relationship and date other people. When that date rolled around he seemed like he had been hit by a semi truck. He even implied we hadn’t discussed it, ever!? Luckily I was able to get him to admit the bullshit behind that argument, originally anyway. Now that we are separated he is saying all sorts of things to previous mutual friends.

That’s the way break ups work though right? Especially as a girl with mostly male friends… They mostly sided with him. But that also tells me they are believing him when they’re told by husband that I would do particular not nice things, very nonfactual things interestingly enough. Stuff that if you know me you’d look at anybody suggesting them with a funny look. But apparently these friends didn’t actually know me, cause they sure seem to be believing his victim claiming nonsense. Yet they won’t believe me (other than the few who have seen him on the edge with his mental disorder) about his being mean or violent. Decidedly, could they have ever actually been my friends? It still hurts to feel this isolated when I was a victim of domestic violence, yet no one is willing to see him as an aggressor. To the point where they’d rather blame the victim as a liar.

I feel like I’m a stalled car in the center lane of a highway, trying to figure out which fork I take next, to actually get to any destination at this point.

I now definitively can say I don’t know what I’m doing anymore. I know what I was doing, with him in my life, was worse for me, but at least I had a map to follow then. Now I’m struggling to understand what I actually lost when my back was turned so that I never actually saw it. Like the Silence in DOCTOR WHO, I always forgot unless I was looking right at it.

The biggest factors:

Being infertile- I always planned to be a Mom. I want to adopt so badly, always have. But I want to see what carrying a life feels like. Having lost so much in my life, having had so much of my self die inside me, it’s become extremely important to me to feel my body make life not take anymore of mine away.

Being a Burden

Not getting school done— I legitimately only have two excuses for not getting my work done. My frequently difficult health issues and my husband’s inability to do anything “adult life related” to take care of himself. When I had to help with his homework, his class scheduling, his doctor’s appointments, his, his, his…. etc. When in the world was I supposed to have time to work on my own work? Especially when the only times I wasn’t busy taking care of his real world stuff was because I was laid up in bed not in any condition to do anything but request help for even the smallest things (ex. picking up my water glass beside me so I can drink, it would get that bad).

Becoming socially isolated— Yeah, I know. That’s something I said I wouldn’t let happen again. That’s how my abusive ex got me under his control, why would I ever let myself be vulnerable like that again? Because when it comes down to it, I have to trust to love; and I really wanted the chance to love this man. So when he didn’t like me going out without him, because “what if something happened they can’t take care of you right,” I willingly conceded to his judgement. But in the back of my head I didn’t realize at the time, I was only doing this to prevent any “punishment” I would “deserve” otherwise. I was perpetuating the Abuse cycle myself. I didn’t stand up for what I wanted out of fear of the consequences. When did I become someone who was afraid of the consequences? What level of emotional, mental, or physical pain did it take for me to finally fold? Because I sure don’t remember the exact incident.

Feeling worthless— I still can’t shake that feeling of worthlessness that has been creeping up my spine all of these years. It doesn’t help that he would remind me regularly in much more clever wording; that I am indeed worthless and dependent on him. Even though he couldn’t even pick up his medications on his own!? When he was feeling worthless he did everything he could think of (not usually consciously) to tear me down until I felt the same way, brothers in arms I suppose? Well I didn’t want to be held in drowning arms any longer.

Still being abused— On some level I knew I married an abusive guy. Under no fault of his own is he like this though. Before you judge him, you have to understand, it’s like Dr. Jekyll and Mr. Hyde. He didn’t mean to ever be cruel and rarely remembered much of the cruelty afterward. Such are the symptoms with his disease. But to find out he is doing “so much better” medically and the way he was treating me wasn’t doing better… started to be a wake up call for me. This cycle was too unhealthy to live in forever. If he was unwilling to make a solid daily effort toward bettering his mental health for his own benefit and mine I couldn’t stick around and wait to see if I’d get suicidal in turns along with him. But maybe that’s what he wanted? He has certainly implied that before. Would that have “justified it all” for him? Probably not, it would have just given him another way to self-hate. Which is the last thing I wanted since I really was looking for the confident nonvolatile man that I was friends with 8 years ago. I knew after the disease was triggered he would never be the same. Not being nice to me so that my days consist of walking on eggshells and not being safe wasn’t part of the bargain for me.

Being Poly— He wanted all the bells and whistles like you see with a new toy in a commercial. But he didn’t want to deal with actually having to assemble a new toy first. He didn’t seem to understand that there’s a lot more trust and work that goes into a multi-partner relationship than most mono relationships (not because they don’t also need it granted). He loved the lip-speak all about being poly and swinging, he didn’t love the reality. That would be why I resent this fact coming out so late in the game. He wanted to be poly or so he always told me. Until I got to be poly too, then what he wanted did a pretty big reversal. When it came down to it monogamy was so ingrained into husband’s head he didn’t know how to be or think any other way. Before I asked to be allowed to get rid of any OPP rules it was just an acknowledgeable permission to cheat on his part. He enjoyed these liberties immensely. But when I wanted to be allowed to play without him like he could without me the ingrained belief that it’s still cheating reared it’s ugly head. He didn’t know how to think outside the guilt-driven patterns of his belief in monogamy and took it out on me. That’s ok, there’s nothing wrong with being mono, but I wish he’d figured it out a little earlier along in the relationship. I wouldn’t have poured all of me into him then. I wouldn’t have given him every weakness I have as a weapon. I wouldn’t have done a lot of things actually, there are even more things though, I would have done.

That’s what really kills me. Realizing that I stepped back into the abuse cycle when I started dating him, even though I’d been climbing the ladder out of the “abused women’s well” rather steadily at that point. Somehow he triggered me right back into it. To the point where I passed up opportunities that ranged from mildly entertaining to most likely life changing. I wouldn’t be who I am today without having been through what I went through with Husband. But who would I be?

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.

Step One Toward Baby World

Well the first steps involve a lot of doctors appointments and tests along with getting my cycle regulated and fertile. Since I was on birth control I have to be off it long enough for my body to start producing eggs again. This CAN take 3 months to a year or so. But I have the time limit of how long before my health deteriorates. If it gets bad enough then trying to have a child wouldn’t be a health-conscious choice at that point.

We see the High-Risk OB this week! We have been consulting with him over the phone and he has been talking with my other specialists. But husband and I get to meet him finally! We will find out what he plans for my Lupus with a pregnancy. I already have the bloodwork done, saw the dentist and eye doctor, my Oncologist’s Okay, my Rheumatologist’s excitement and curiosity. This really is it before the whole waiting for a positive test result.

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.

Feeling Vain

A common theme I am seeing is how much all of us struggle with the visible aspects of our “Invisible Illness.” I don’t think it’s vanity for us to find it hard to cope with our looks changing when we are dealing with so much change in all other aspects of our body and life. It is often hard to deal with no one knowing or being able to tell we are sick. But there is a different sort of difficulty when we deal with our looks being affected in a way that doesn’t tell people we are sick, but rather just makes us feel even less like ourselves when we look in the mirror. Stay strong ladies! Find little things that you remember you love about how you look, instead of focusing on what we have lost (butterfly rash, hair, psoriasis, etc.). We are all still beautiful, just not always the way the media is teaching us to define our beauty! Do me a favor sometime. Stand in front of a mirror after your next shower/bath and blear your eyes. Then look yourself up and down. It makes it easier to see what others can see. It might help you realize you’re still gorgeous. Then focus on one part of you at a time, not to find the flaws, but to find the little things you still love in your looks. It’s worth it. You’ll walk away smiling. We are all still beautiful, our diseases just make it harder to see it a lot of the time.

Hormone Comedown

It’s like I was all hopped up on hormones and now I’m coming down:/ I am crying all of the time! It’s ridiculous. It’s isn’t even like I’m crying things that deserve a tear or two!

Oh look my cat just wrapped around my other cat to sleep!

**Excuse me I have to blow my nose**

Wow, it’s like PMS times 10… I can’t wait for the hormones to fade so I can stop this ridiculous “emotional lability.”

Finding Out About The Oncologist

11/5/13

I met with my Rhuemy today. I also had to do two other doc appointments before that!  It was an exhausting day filled with information. As well as adding to my questions.

I feel like I was a level of hyper focused wired and scattered by the end of the day that I haven’t reached in a while. I started my morning at 7:30am I get that for some people that’s nothing or even sleeping in late. Well 1. I feel sorry for you and 2. I can’t get up that early. Like CAN’T! I hurt and have trouble moving or thinking. I usually puke, have a migraine, my stomach bloats… It’s pretty ridiculous and I can go into more details if someone asks hahaha otherwise…

Let’s start with the fact that I wasn’t having the majority of these problems when I woke up. Some symptoms, not at all, other symptoms so mild they weren’t what I consider there.  I think that this was the affects of the hormones.

My Dad and I left around 2:00pm so that we could get there on time. Admittedly, we should have left earlier, this time was the latest possible and pushing it. But I was exhausted and failing to wake up from my nap that I’d barely had a chance to fall asleep for. I wqas a zombie on the car ride, but started to pep up as we drove. I picked music off my Daddy’s iPhone and we talked as my brain started to work again. It was fun like when I was younger (Middleschool and Highschool) and my Dad took me to my appointments! I wanted to go to lunch and the art museum after hahaha If only I had had the energy like I would then! But now that I think back, I didn’t have energy then either. That was why my Daddy; chose places where I could sit down, always got me fed first for energy, etc. My parents put an amazing amount of thought in to how they interact/take care of me. I’ve noticed recently how much that rubbed off on my siblings as well;) haha It seems to be rubbing off on some friends here and there. I like this, I hope it is a positive influence. So far it seems to be! Nurturing is something we observe and develop just as often as we are “naturally” born with it.

When I walked into the hospital I go on, like, display mode? I am an oddity the doctors always put me on display since I was little. I was starting to feel like an uber sorority girl on extra lattes! I couldn’t concentrate in the waiting room which of course meant I started commentating my frustration about filling out the annoying pain and feelings resume where I describe with numbers my pain lately. I get to fill these questionnaires out in every doctor’s office, every single visit!

Not surprisingly, my blood pressure was high… again. Not too high though which is nice. I’ve been worse… it was 158/98 if you’re following the numbers:)

Finally, I got to see my Rheumatologist. I started with updating her on how far I’ve gotten with everything I needed to do before. Thus giving her the timeline, within the window she created, that I am agreeing to.

As much as the hormones are helping with the Lupus and RA, they don’t seem to be doing anything for my brain stuff. Everyone I talk to can see how much better my health is since the hormone treatments started! All of the docs can see it too! So my family and friends keep asking if that means I have the option of just sticking with the hormones as a treatment on its own… sadly not an option. The greater damage I am receiving is from the brain being attacked. So I need to take chemo to treat that part of my body being attacked, no matter how awesomely my body is reacting to the hormones elsewhere!

The Doctors name was given to us and an appointment was scheduled for us to attend. It was done. That’s when it got interesting.

Fertility Preservation: Eggs & Embryos

Wednesday Oct. 30th

Believe me I pounded my brain about it. I made my sister ask me the hard questions. I knew she would be willing to be the logical side that other people try to hide from cause they are afraid it will be seen as mean or I will get offended. The questions are hard questions to ask. My partner isn’t married to me. We haven’t gotten engaged. We don’t have a legal obligation to each other yet.

We’ve discussed engagement, but feel it is important that we focus on his graduating from college and acquiring a job with benefits first. (Though Obamacare may alter this some, I’ve recently had a discussion that made me realize I need to do research!) Not to mention, now we have a pretty serious health step to deal with. We know we want to be together. The legal stuff can come later, when we are in a stage of life that is truly adult enough to take care of each other the way we want to be able to! I feel this is a pretty adult decision on our part, but creating embryos together is viewed as not traditional by so many others that there might be a stigma associated with it.

What happens if you aren’t together when you decide to have children? (Break-up, Divorce, Separated, whatever)

Would I still be comfortable with the fact that the child is half his?

Would I be able to handle potentially inviting him into my life, since he would have legal rights to the child if he chooses?

Am I ok with him not giving monetary assistance (him choosing to have no legal or social part in the child’s life) if I choose to have a child alone in the future?

Does he think he would want to be in the child’s life if not together?

There were a lot more questions. Hard analogies used, like “old exes.” What if it were this guy’s? Could you handle it? Cause if not . . . .

I had to know how I felt about each question. He thought about it all for himself as well. Then we discussed it. We discussed it a lot. He thought of questions I hadn’t and vise-versa. In the end we decided this is what we want. We want to make embryos. We will do half eggs alone, so that allows me choices if something changes, but our embryos will be there if the eggs don’t work. We are not making assumptions that we will be together, but we are admittedly excited that this option isn’t being taken away from us! (We’ve had the names of the first two kids we want picked out for years! sssshhh don’t tell!)

Fertility Specialist Time

Oct. 27, 2013

I honestly didn’t have the energy to post about what happened Friday the 27th through Sunday the 29th! I’ll try to explain the best that I can.

I went to see the Gyno in charge of the particular office I utilize regularly. Mind you, this office has 6 OB/GYNs all with various qualifications. The guy in charge listened to my situation and I asked him the questions my Rheumy requested I discuss with him. My Rhuemy wanted me to ask about switching birth control to a shot-style BC. The idea being the other med they’d switch me to would help preserve my fertility.

Please understand. I have multiple reasons why my fertility is in jeopardy with my specific situation. Add in the chemo and it just makes my odds painfully low that I will be fertile when my treatment is over. Having children is something that is very important to me. I decided a long time ago that I want both biological and adopted children.

The Gyno looked at me and put his hand on his forehead and then rubbed it through his hair. Boy, did he look uncomfortable! He said he “has to admit I am not qualified to advise you on this matter. Not a single doctor in this office is.” Well for once a doctor was just completely honest!! Not gonna lie it was REFRESHING!!!!

The Gyno gave me a few different doctors’ names and numbers. I asked if I needed a referral, he said having the doc’s phone number was the referral! He then continued with names and numbers of the other options available in the area. I got in the car after the appointment and immediately called the top guy on the list. I left a message explaining that I was going to start chemo that the docs wanted me to discuss BC to help maintain my fertility. I figured I could call the other doctors when I got home!

Well, instead, when I got home, I fell asleep. That keeps happening lately. Random falling asleep. I’m not enjoying it too much.

When I woke up I had missed TWO calls from this specialist’s office! Wow! Talk about getting back to me fast! I listened to the messages and realized one was from a nurse and the other from the doctor himself! He stated that he would call again later and if he didn’t get ahold of me that night, he would call the next day! Yeah he said it! HE WOULD CALL ON A SATURDAY!!! What doctor does that!? Wow!! An amazing doctor!

It gets better. When the doctor called me back, I was at the grocery store. I probably appeared totally insane talking to the vegetables. The doctor was asking for clarification about my situation. For instance, I had forgotten to mention that I didn’t have a form of cancer, but rather Lupus. After explaining my situation more clearly to the doctor, I gave him permission to look at my records and he told me that he would like to call me back soon, that he needed to make a few phone calls and look a few things up. I said, “Thank you!” At this point, I was blown away by how competent and quick this guy was!

When the doctor called me back I had made it to the cereal aisle, I blanked on which cereal I was out of, so I ended up choosing a cereal I knew I hadn’t had since I visited my grandma in Florida! (Incidentally I forgot how much I like All-Bran!)

The doctor told me that he called a number of my other specialists as well as reviewed the med regiment planned and my medical history. He wasn’t certain that I had had the risks properly explained to me. Infertility and early menopause weren’t just possible symptoms for my specific case they were likely symptoms. There really wasn’t a BC he could give me to help preserve my fertility that wouldn’t be beginning stages experimental and with these experimental meds, the risk of pregnancy would too high (pregnancy on chemo? Super no no!!). From what he had determined, the only option that would allow me any great chance of having children in the future would be harvesting my eggs.

We happened to have discussed this idea a day or so ago, mostly as a curiosity, but as far as any of us knew, this procedure takes months!!

Turns out it doesn’t! At least not when your talking about an Emergency Fertility Preservation procedure. Right?! Blew my mind too! The doctor broke down step by step the necessary options based on my medical history. It was crazy. I’ve never dealt with doctors this put together until this week. Maybe it’s the adrenaline rush of my situation; they all are zeroing in with their super doctor curiosity. Or maybe it’s the level of specialist I had to get to? He explained a lot. I had to stop in the middle of the store to write things down. He suggested I work with a med school doctor that he had already called. He had explained my situation to the doctor so her office would be expecting my call Monday to set up an appointment. He explained that since I am unmarried, he was unable in good conscience to suggest embryo freezing. Though not as successful as freezing embryos, freezing eggs was the option he would recommend. Hmmm, cause I’m not married?

Everything was set for me to wait until Monday now. Okay, wow.

When I left the store, I sat in the car and realized I had forgotten half the things on the list. I had purchased only a few things. I’d really just wandered around the store! I’m 27  years old. We are talking about whether I can have the option to have biological kids in the future. Things just got heavy in a whole new way.