Today I went to the bathroom and took my phone out of my pocket and set it on the toilet paper roll. I then checked my back pocket and my phone wasn’t there so I went to open the bathroom door to go back to my desk to get it and saw it on the toilet paper roll.
I had been extremely tired at work to the point of where I was falling asleep on my lunch break. I was going straight home from work and going to sleep. I had no energy whatsoever. My first thought pointed to being pregnant but I wasn’t sure as we weren’t actively trying…. But we weren’t being careful either.
I told my husband and we stopped by the store and bought a test but I wanted to wait the next morning since it’s more accurate first thing in the morning. The next morning I woke up anxious, my alarm didn’t even have to wake me up…I was ready to take the test. I took the test and it was a very faint positive – very hard to see…but a positive is a positive. I hadn’t missed my period at that point so I waited two days until I actually missed my period (and I did). I took another test and the line was darker but it was still faint. We went to the doctor for confirmation the next week and the pregnancy was confirmed. We were so excited. Our due date was June 6.
We told both of our mother’s the next weekend, we wanted it to be a surprise. We also told our immediate family and we had agreed to tell the rest of our family on Thanksgiving as we would have our first appointment by then and everything. Everyone was so excited!
The following week (Monday) I awoke at 2 a.m. to cramps and bleeding. I was still half asleep, I went to the bathroom to get a pad to see how much blood I was losing and I went to the kitchen to make a homemade heating pad with rice and a sock. I managed to go back to sleep praying that the bleeding would stop…I read that in some cases it was totally normal to bleed – I was reading stories of how everything was okay in the end. My alarm went off at 6:00 a.m. and I was still bleeding. I woke my husband up and told him that I think we needed to go to the ER. We needed to make sure everything was okay.
At first we stopped by my OBGYN and they told me that they only saw people for emergencies if they were over 16 weeks and we were told to go to the ER. We get to the ER at 6:47 a.m. and they gave us our own room. I had to put on a gown and do a urine sample – the pregnancy test came back positive. They did blood work and then a vaginal sonogram. They didn’t see anything with the vaginal sonogram – there wasn’t a sac. They told me that I could be earlier in our pregnancy than I thought and it might be completely normal for them not to see a sac if this was the case
Hours passed before I saw an actual nurse for the OBGYN. She had to come from the OBGYN to the ER and evaluate me. I wasn’t wheeled to an actual room to be evaluated, it was done right there in the emergency room. She turned a bed pan upside down and put it under my back to lift me up…that was a very uncomfortable position for me to be in. There were no stirrups on the bed and the position I was in was so painful. She told me my cervix was closed and that could be a good sign. They wouldn’t know until my blood work came back. I was told to take it easy until we find out of my HCG count came back. They let me know that it’s supposed to double every two days. My HCG count was 80 which was very low to be 5 weeks. They let me know they would be calling me to set up an appointment to have my blood drawn in 48 hours (Wednesday). We were finally discharged around 3:00 p.m.
Of course I worried the entire time. The bleeding had stopped but I was still unsure of what to think. Tuesday came around and I didn’t receive a call. Wednesday morning came and they finally called me (on the day I was supposed to come in). Apparently they had scheduled it but had failed to call me, there were communication issues. She let me know I could come in anytime so I decided to go right then…I was eager. I went in to get my blood taken and was told that I would be called that day with the results.
Friday morning came and I still hadn’t gotten a call from anyone telling me whether or not I had a miscarriage. You would think that would be the first thing they did, right? It’s not like I’m sitting at home worrying. They had a patient portal where you can review your labs and everything that was done – it takes 48 hours to be inputted online but the doctors know within hours of the test. I checked the portal to find out my count had lowered to 36. I knew what the answer was just from seeing that, I didn’t need anyone to tell me. I had prayed and prayed but God has a bigger plan. The nurse finally called me Friday afternoon to tell me that they didn’t need to see me – my body had taken care of everything naturally.
We had/have a great support system. Great family and great friends. Not many people knew about it. The only thing is my sister-in-law. She didn’t congratulate me when she was told that we were pregnant and she didn’t say anything when she found out we had a miscarriage, which shows who she is as a person and I hate that. But that is for a separate blog.
It’s hard thinking I should be pregnant. We were so happy. But God has his own plan for us and I have to remember that. Just because we lost our baby early doesn’t mean that I wasn’t a mother. Life was growing inside of me and I know that is hard for some to understand when they’ve never had this happen to them.
Opening up about Huntington’s Disease.
Easier said than done.
It’s so easy to keep it to myself.
Then I won’t be judged
Why won’t you get tested?
Wouldn’t you feel better knowing if you have it or not?
Aren’t you thinking about your future?
Your Husband’s future?
Your children’s future?
Those are only a few of the questions I get asked when I tell people that I’m not ready to be tested yet. I would rather not know right now, because honestly….if I do have the gene…dying would seem far better than living with Huntington’s Disease and putting my family through that, my Husband.
Do I want my Husband to end up being a caretaker of me?
If you don’t have the lucky (ha) chance of having the gene, then you have NO ROOM to talk. You have NO RIGHT to tell me that I am selfish for not getting tested. It’s so easy sitting behind the sidelines voicing your opinion when you don’t have to worry about it. To get tested you have to go through counseling for THEM to tell you if you are ready or not. You don’t even have the final decision.
You don’t have to worry about hearing the horrible news that you will have the gene and within a couple of years, you won’t be able to do anything for yourself. You will have to be 100% taken care of. Adult Diapers. Feeding Tubes. You can’t talk. You can’t walk. Your personality changes. You are no longer yourself. You can’t control your movements (Chorea). Nothing will ever be the same. There’s only medicine for the Chorea, there are no medicines to slow down the progression. Each person is different so there is no way to get ready for it. Every lifespan is different. There’s no cure.
You don’t have to worry about hearing the amazing news that you don’t have the gene and you never have to worry about it….but then the horrible guilt overcomes you because you made it out without having the gene but one or two of your siblings didn’t.
You just can’t win.
I have an amazing husband who supports my decision, whatever decision I make. Who will be there for me no matter what. He understands. I have an amazing family that will be there no matter what. I don’t have to worry about any of that.
But no one has the right to tell me what to do or to try to talk me into doing it.
To question me and try to pry.
Don’t do it.
My wedding is getting closer and closer.
One month from tomorrow to be exact, and I couldn’t be more excited.
With the excitement comes fear.
I’ve developed this weird eye twitch. Not sure if it’s stress related or if it has become a habit. Of course my mind wonders to HD.
I then start thinking about how bad I want kids and to grow old with my husband and have grandkids and great grandkids.
I think the not knowing part is starting to really bother me. I might need to get tested that way I won’t have to worry about every twitch, every stumble etc.
Sometimes if I do my mouth a certain way, the area around my mouth starts twitching uncontrollably… It’s really worrying my but I’m trying not to think about it too much. I even try to make myself do it again and I can’t ever do it, it just happens sometimes if I make a weird face.
In other news, we were given the go ahead to decorate our cubicles for Christmas….and we are having a contest. Of course me being me, I have already started decorating and my cubical looks like a Christmas Present. I’ve been telling people that I’m the gift inside the box and I’m going to pop out of the box. Lol. I will post pictures shortly.
Exciting news! There is a new drug trial beginning for a treatment of Huntington’s Disease (HD). HD is a truly nasty disease. It tends to onset in your forties and slowly robs you of your personality, your bodily function and your cognitive abilities. Worse, it is a genetic disease that is inherited in an autosomal dominant manner; this means that it’s a fifty fifty toss up for each of your children as to whether or not they will also go on to develop the disease. Over the course of a decade or more you will lose everything that made you you and there is absolutely nothing you can do about. There are no treatments, nothing that will slow it down and nothing that might save your children suffering the same fate. Until now.
That’s the hope, in any case. The trial is led by Professor Sarah Tabrizi, a vibrant doctor…
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Huntington’s disease is not a condition that is immediately recognised by most people and for many decades this relatively rare, progressive neurological condition has languished in a vacuum of silence and secrecy.
We live in a profoundly disability-negative society and an illness that can cause severe mental ill health, profound changes in behaviour, a type of dementia and severe physical disability and which confers a fifty percent risk of inheritance on every child of a parent with the condition is something many, if not most families, have tended to hide; carrying an enormous burden of shame, secrecy and fear.
For generations children growing up in families affected by Huntington’s disease have done so living with the responsibility of caring for a profoundly ill parent while witnessing their own potential future. There is no cure for this disease yet and the care, treatment and support of people with HD has often…
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Lately I’ve been feeling a little less like myself.
Of course the worrying comes with that (OH no, am I pre symptomatic?)
I feel like my vision isn’t what it used to be (I wear glasses). In bright light, things have shadows around them…I guess kind of like auras? (Might be my astigmatism in my right eye).
I drop things a lot (But I’ve always been a clutz), I accidentally throw my phone a lot even though I don’t mean to. (Clutz)
My hands hurt a lot (I type tons at my job).
My fingers twitch and when I hold them still they shake a little (Which is probably normal, I am on anxiety meds too).
I feel like I don’t have a good balance as much as I used to. I stumble sometimes and I turn corners too sharp and I and up bumping my shoulder into the door frame or the walls.
I have been forgetting names lately, even coworkers and friends. It takes me a minute to remember names or words that I am trying to find. I find myself getting tongue tied really easy.
It sucks to worry, and all of this could be stress. The fact that I am an overthinker doesn’t help much either. I just want to live and long, happy, and healthy life where I’m not dependent on anyone like HD makes you!
I always loved Bailey when watching The Sisterhood of the Traveling Pants…this sums up how I feel.
I’m getting to the point where I want to get tested, just because I want to know if my days are numbered (aren’t they already?). It really got to me the other night when thinking about it….I want a family more than anything. I want to marry Roman (Which I am April 16, 2016, YAY!), I want to have our own house and have a big family.
I want MORE THAN ANYTHING to get tested and the test come back negative for HD…but don’t we all?
I just want to live a long and healthy life. I don’t want to worry about having symptoms if I drop something, if my toes twitch, or any other part of my body twitches. I’m tired of worrying.
It costs so much to get tested and I really don’t understand why. That’s a big fall back on why I haven’t gotten tested, the insurance won’t pay for it even though it’s a blood test. I’m not ready to find out if it’s positive, but it would ease the worrying of not knowing….or would it?
I know I’ve been a little MIA lately. Well, for a couple of month. I have had A LOT going on! I am planning a wedding, YAY!!! We are getting married April 16, 2016 at the Birmingham Zoo! I am SO excited!
Okay now to the point.
I have been thinking about HD a lot lately. I have become more open with it, but I still don’t think I’m ready to get tested. I have been noticing a few things that has been worrying me…. It’s probably normal but since I know about HD I’m probably freaking out.
My vision has been weird… I’m seeing shadows around things and open spaces bothers me. That could just be my Zoloft (for anxiety) but it’s weird. I can’t see as good and I don’t know…it’s just weird.
Another is twitching, I will have muscle spasms. Roman does too, especially when he’s falling asleep. His body twitches like crazy. That kind of makes me feel better…but he’s not at risk for HD and I am.
I have been forgetting words lately, and I get tongue tied very easily. Also when talking to people (friends, anyone other than my family and Roman) I find it hard to think of words or I just say stupid stuff. That could be my anxiety…I’ve always had it.
My fingers shake when I try to hold them still…it might be from my work(typing to much) or my medicine…but it’s still weird and scary. Every little thing reminds me of HD and I think to myself “OMG am I getting symptoms?”
I wish they would find a cure or AT LEAST come up with some kind of treatment.
I wish there was something I could do to help.