Yay! BFG and I got a dog this week! Stupid dog… he’s huge, and does not meet any of my requirements for a dog. I guess that’s a part of being in a relationship though, compromise. We’re still looking for my little cuddle bug. Until then, I’m stuck trying to teach this big high energy pit/lab mix what it is to cuddle. He does seem to be taking to it; it’s rather entertaining to watch him try and curl up into a little ball next to me. Sometimes he tries to get onto the same couch cushion I’m on and hopes I won’t notice. I honestly don’t think he realizes how big he is.
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?
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.
It’s not that I don’t have support, it’s not that everyone isn’t listening when I need it; but boy do I feel alone.
My friends and family all try to remind me that I have embryos AND eggs frozen. Most people aren’t lucky enough to have either. They are also reminding that this concept isn’t coming out of know where. I had already considered this as a possible outcome of my health issues as well as my medication side-affects. But Lupus has taken something from me, every step of my life. Step by step I go and Lupus follows behind snatching it all out from under me, since I was a child! I just didn’t want pregnancy to be another one of those things that Lupus took away from me.
Yeah, you’ve heard me correctly. After a lot of research on both my part and my specialists’ we decided it’s worth a try to have a baby at this point in my life. I know that seems crazy right?! Well it kinda did for me at first.
Like honestly, I thought I’d get a dog first.
But my best chance of remission is having a child at this point in my life. Not just of achieving remission, but of having a possibly healthy pregnancy. I’ll try to break it down.
For one thing this will require support: Obviously any pregnancy does. But this one would for multiple reasons. Money, Help with my health, help with tired.. doc drivers and house work
Affects on my Lupus: enzymes, arthritis studies, by-passing after flare-up, likelihood of remission otherwise, likelihood disease will limit my ability to carry an infant to viable term after 35
Risk to child Now: Likelihood fine if it survives first trimester miscarriages I do not test positive for the protein’s as of 2011 that make a second-third trimester miscarriage likely.
Risk to child Later: All risk escalates along with that of the mother, risk of fertility issues go up as well
Risk to mother Now: A typical High-risk Lupus pregnancy, possible fertility issues already
Risk to mother Later: The risk is not considered worth it. They wound’t even talk about later for me being pregnant. The doctors switched over to discuss us having surrogates.
It was a little disconcerting to find out the week before the wedding that not a single person from my Fiancé’s family was interested in being at our Rehearsal Dinner. They all had things more important or interesting to do…!?! I was raised in a house where family is the most important thing. Granted we fully believe family isn’t limited to blood, but when you commit to being family there are certain things you don’t drop the ball on. Maybe I should see this as a sign that the family I’m joining doesn’t actually deserve that title. I’m starting to truly believe they don’t know how to be a family at all. No wonder they never seem to have been there for Fiancé in stories from his childhood. I thought it might have been how he angles the stories. But this is making me sad for the inlaws I always wanted and now will never have in these people. How do other people cope with having such shitty inlaws?
Sadly, his family not coming the night before also mean that his Best man won’t be here to throw him a Bachelor party. My siblings are throwing me a Bachelorette party. When I mentioned to them that his family wouldn’t be here decided to make it a co-ed Bachelor/ette party! Yay! My siblings are the epitome of family. They’re so marvelous:) My sister had great games planned and a pub crawl! My brother’s lady even made a chocolate penis cake!!!
Logistics go into getting married for any couple. But the type of things we have to discuss and get lined-up before signing the papers is a little different from the typical.
I mean not all of it is; we still have to figure out school loans, finances in general, His job options, when, where, when to start planning the wedding, how to announce it, what kind of budget will be available for the wedding, etc.
There are a few other things that crop up. These things may be of passing necessity for other couples, but for us, a wedding can’t happen until they are nailed down. We are talking about insurance, caregiving, His job options with my medical issues involvement in his hours & benefits, medical costs, Social Security Disability potential, further health impairments in the future, transfer of power of attorney, etc.
Sure all couples discuss this stuff at some point. In my case, we have to discuss it NOW. Not just now, but as things continue to change it has to continue to be discussed, as they change so will/might our options. This has to be taken into consideration too. Until all of this is discussed and completely figured out I have the requirement, more even than just necessity, to have my parents’ legal and financial assistance to survive trying to finish school on top of how sick I am.
We have been discussing options for months. When the new Healthcare laws came out a LOT changed as far as our options. My guy doesn’t have to have a job with benefits anymore before I can switch from healthcare under my father. Now I qualify for Medicare even with my pre-existing conditions! Which is a huge step for America and was a huge roadblock in the two of us moving forward at all with our engagement. We got to finalize our wedding date!!
Maybe I should start by clarifying that my BF was raised in two different religious denominations. His father and stepmother are Christians and my BF went to church with them every Sunday. He also participated in various church activities such as church camp and youth volunteer programs. His mother on the other hand, converted to Judaism when he was a toddler. So, Christmas was not a holiday celebrated at his Mother’s house.
The thing is, his mother lived with his eldest brother. And his oldest brother does celebrate Christmas. So how do we get around this? SANTA DAY!!!
Not to mention they also celebrate the winter solstice. Which is a pretty cool thing if you think about it.
To have energy (or spoons) right now would be wonderful. I have so much to do, not the least of which is updating everything that’s happened to me on this blog. (Though I would like to set-up the Dragon Dictate I got for Christmas first. )
I am sleeping constantly. I am falling asleep while I eat. I have to have someone keep me awake and keep me eating, otherwise I fall asleep mid-meal. When really tired and unlucky, I’ll fall asleep mid-chew.
Trying to deal with the taste change from chemo is exhausting. Just trying to get enough fluids is exhausting. :/ Add in just pure inability to stay awake for a certain number of days after each treatment: My life has been fully interrupted.
I haven’t any spoons. Or if I do, it’s like a living nightmare, and the spoons keep melting through my fingers the moment I have my fingers wrapped around a few.
I’m so unhelpful in my own life right now I can’t imagine what it’s doing to the people who are taking care of me…