Tuesday, May 13, 2014

Im back !

It has been almost an entire year since I have blogged. Not for any real reason. Maybe, denial, humiliation, laziness..... who knows.....what I do know, is every time I have thought about it, I got anxiety. I would log onto the computer and dance around the website unable to focus in on what I was there for. Even now, I sit and stare at the screen just wondering where to even start.....

I don't really have any specifics for the past year except that I have grown in so many ways I can not even begin to count. I was able to take time for myself to learn who I was again. Things happen so fast. Life happens so fast; next thing I know, I have lost 3 children and don't really think I every grieved and processed the first loss. The end of last summer I had some sort of break. I don't know what it was, but something changed inside of me. I feel like the light inside of me, the light that has been out for many years;  has finally been lit again.

Since last summer, I have been exercising and making healthier choices, and in return I have lost 30 pounds. It has not been easy, I have not used medications or phony gimmicks, just good old sweat and tears. I am finding that there is nothing more satisfying than self improvement. Its becoming an addiction. Without some sort of program lined up for myself, I feel like I spiral out of control, and for the first time in my life I have control.

Thursday, May 9, 2013

The truth hurts

We went to the Maternal fetal medicine doctor today. She was great, very personable and very receptive to our questions. Basically, with APLS I have so many risks, bleeding, clots, high blood pressure and who knows what else. We discussed the dosages of blood thinners and adding a baby aspirin in the future if we did get pregnant again. But that's not why we were there, we wanted to find out if it was possible and safe for us to have children. She is very concerned about my blood pressure, especially as young as I am. There is a 40% chance of pre-eclampsia already with my blood disorder. She questioned where I got the high blood pressure, and honestly I don't know. I was diagnosed with it when I was 20 years old, just figured it was stress or something. But the longer I go and the older I get it just gets higher and higher. I was telling her this, and that my Diastolic blood pressure is usually in the high 80's and low 90's no matter what I do. Even with me adding in exercise lately, it seems to still run high. Even with being on 2 blood pressure medications. Of course weight loss and diet can help, but she feels there may be something else causing my blood pressure to be so high. So she recommends I have an echocardiogram to check the function of the valves of my heart, and especially the ventricles with my high diastolic. She said they need to make sure the wall of my heart is not being affected by my blood pressure and make sure its not thickening. She also wants me to have an MRI to check for renal artery stenosis, or narrowing of my kidney artery that could cause increased blood pressure. I also need to have an eye exam to check for any damage to the vessels in the back of my eye caused from the blood pressure. If these tests come back normal, we can CONSIDER trying again. If any of these tests come back showing organ damage, she does not recommend we have children. It could cause too many complications, and even be life threatening to me.

Now of course this is not exactly what I wanted to hear, but I was expecting something crazy, after all it is me. I may never be able to carry our own child, but have started to think about surrogacy. The cost of that and adoption are so outrageous, I doubt that would ever be an option, but it would be worth looking into. I need to consult with my OB about birth control, because she said I need to check out on all these tests before we should even consider trying. She also wants to check my thyroid and screen for diabetes. I really have to start taking weight loss and healthy eating serious, Im not unhealthy, or obese, but anything helps!!!

All of her notes will be sent to my primary care doctor, and he will set up all the testing..... Really just concerned about how serious this all is. Im very scared but trying to stay positive and busy. Im so thankful for such a wonderful husband to stand by and be there for me as I go through all of this. He helps me remember certain information the dr's needed. I love him so much!

Its a huge pill to swallow that I may never experience the miracle of child birth. It makes it hard for me to see my friends and family having babies and getting pregnant. But I am still so happy for them at the same time. Im working on it.....

Thursday, April 18, 2013

Making progress

Its been almost three months since we lost our little man :(. I have been slowly getting my life lined back up, and I have made some improvements physically. I talked to my doctor about getting off my medication for my heart rate/blood pressure. The only way he would let me do this was to wear a "holter" monitor. This is a very annoying pack with a bunch of wires hooked to it that they stick to your chest to monitor your heart rate for 24 hours. If you have an "event" of fast beating heart palpitations etc, you are supposed to push this little button and then record on this log what you are  experiencing. If my results came back good I could slowly work my way off my med. I had a few times I just felt like my heart was going to fall out of my chest, but when he went over the results, he said that actually my heart rate dropped below 60. And because it wasn't going too fast, he is comfortable weaning me off!!!!

I am on a beta blocker, and you can not stop these abruptly, or you have rebound high heart rate. So over the next month I will just be taking half a pill. I have to watch my heart rate and Blood pressure very closely to make sure I am not going too high. If I am I may have to go to a higher dose on my other blood pressure medication. BUT.... I have also been going to the gym or getting outdoor exercise at least 4-5 sometimes 6-7 x a week which is about 60% more than I was before. I have started going to cycle class again, and pushing myself hard. I almost had a difficult time towards the end of the class last night because I could feel my heart rate very high and I was getting pretty dizzy, but I just took down the effort a little bit, closed my eyes and focused on my breathing to slow it down. I made it through the class and feel positive about me being able accomplish getting off of both of my heart medications with diet and exercise. Ive been logging everything I eat on my fitness pal app, even the bad stuff because it opens my eyes  to how crappy it is. Im already down 6 pounds:)

We have an appointment coming up with Maternal Fetal Medicine May 9. Im having my Hematologist send all of his notes over to them, along with my OB's notes. I want them to have the entire picture of what has been going on with me in the past so they can give me the best most educated idea of what my risks really are. I didn't realize until recently that each pregnancy I have had, I never went to my Hematologist first. My biggest problem is in my blood. Im already looking into patient assistance programs on LOVENOX. My hematologist said the Heparin that I was on did the same thing , but he felt Lovenox is the most effective. Heparin can also cause a drop in platelet levels, and I already chronically have low platelets so my risk of bleeding is doubled. Only problem is even with my insurance it would be $1300/mo for 60 shots that I would need to take twice a day the entire 9 months($11,700). Supposedly there are programs out there that can help with the cost or if you have a condition like mine will supply the medication to you at no cost. Just gotta find them.

The best part about all of this, is that I am learning how to just keep on enjoying life and don't take anything for granted, and I also feel like its making me a better nurse, As a chronic patient myself, I know how important it is to get things done at work in a timely manner, make sure we have our patients come for follow up. Be available to help and offer information for things like patient assistance. You never know how important your health is until it has been taken from you and there's nothing you can do about it.

Tuesday, March 12, 2013

6 weeks later

Well its been exactly 6 weeks since we lost the baby. I had my appointment with my OB doctor today in follow up. Everything looked good, there was nothing extra to tell about what happened to the baby, he just said his umbilical cord was constricted. He didn't know if this was due to my antiphospholipid syndrome , or if it was just a fluke. My Blood pressure was very good today at 117/82. he was happy to hear about me joining the gym and setting goals to get healthier.

He told me he was content with my previous high risk doctor in Topeka, but he feels the doctors in Wichita will be much more proactive. He said they are in with KU med, and the are very good with the tough questions of the future. They can help him and my other doctors decide if having a child is something we can try for again, or SHOULD try again. Basically they will tell me will the benefit outweigh the risk if we decide for another. My previous high risk doctor was so optimistic which is good, but I need someone who will be REALISTIC also. I need someone to point me in the direction of some help with these big decisions. I am such a science/math person, I need numbers, percent's, chances. Yes, to hear that you can have a heart attack or stroke during pregnancy is scary, but what is the actual chance. 2% is much better than 45%. I just feel like I cant make an informed decision and be happy with it until I have some answers. I think that is the closure I need, at least for now. I should be hearing from the Maternal fetal Medicine clinic within the next couple of weeks to get scheduled.

Til then, I just keep going, just keep breathing and looking for the light at the end of the tunnel.

Antiphospholipid Antibody Syndrome

Click on the link above to see about the disorder that I have. I have had a lot of questions, so hope this helps. I would say I am the poster child for this lol

Thursday, March 7, 2013

Working through the tangles

This week has been a great week so far. I feel like I have hit a new stage. A step higher and brighter. I feel myself smiling and joking around again. Getting more interest in hobbies and energy back. I just do one project a day. I've been focusing my time on work, and organizing around there. Trying to be effective and efficient. ha ha. I like my job, I have control over almost every aspect of it, I can be as OCD as I want. Its good for me to have something to focus my time on. I wish I could have this focus with cleaning the house. An unorganized house for me, means I have been busy doing things which is good.

My friend let me borrow a book called "When Empty arms become a Heavy Burden". I took it to the gym with me yesterday and walked for an hour on the treadmill with no problem at all. I couldn't believe how fast it went by. I was glued immediately. I couldn't believe how closely it related to my situation. It is very interesting to read, and incorporates the bible and teaching into it to help with acceptance. I read some more this morning, and am hoping to maybe finish it before Monday.

I have my 6 week follow up appointment coming up next week. Who knows if he has anything more to tell me about what happened or not. Hopefully not. And hopefully it was what it was. Im not sure what the future holds yet for our decision of children. Only time will tell. The Hematologist I am now seeing says it is possible if we would want to have children again in the future. I am going to look into Lovenox (blood thinner) at KU med and see if they have any assisatance with the cost. Lovenox is $3000 a month WITH insurance. If not, the Hematololgist also said they could have me get injections at the clinic and it would be billed differently and maybe help with the cost of the medication. Heparin is the blood thinner I was on, but I already have low platelets , and a side effect of the medication can cause low platelets, when Lovenox does not. If my platelets get too low I can bleed. I would need steroids to increase them. They couldn't switch to Lovenox once on Heparin, because risk of clotting goes up during "bridge time". Its a whole medical mess, and its not fair. I wish I didn't have to worry about any of it. I wish I could just be normal and never have to worry about any of it.... But such is life. Which is part of what that book includes. Im praying for the strength, and working on just living every day to its fullest.

Love seeketh not itself to please,
Nor for itself hath any care,
But for another gives it ease,
And builds a heaven in hells despair.

- William Blake 1757-1827

Saturday, March 2, 2013

Can you say anxiety!?

I was having a rather good day, decided to get online and look at instructional videos on how to improve my disc golf drive, and under my you tube I am logged in as myself so when searching through, there are recommended videos for me to watch based on my search history. So here I am watching disc golf and in the right hand side there is a video about someone having triplets, I of course click on the video after ignoring it for almost a month. I'm telling myself its may be helpful and "therapeutic". I watch the video and more options start popping up and there were two videos on there about people losing there babies, showed pictures, told the story etc. The last video I watched ended up ending with a picture of the husband, wife and baby at 15 weeks..... It started to make me think about how our son was only a few weeks older, meaning he looked about like that only more developed.... Instantly a rush of anxiety took over me. My heart rate instantly went up, I felt severely anxious and literally even felt like I was hyperventilating. I literally had to close the computer right away, get up walk around, get some water and a few big deep breaths. This is crazy, I cant believe it still hits  me like this. Luckily, I have Ativan for moments like these.... I am just now coming down from this unexpected overwhelming experience and it does make it better to write it out and realize what I need to add to my "needs work" list. Step 1, don't look at You Tube videos about pregnancy loss!!!

I thought through the whole process all over again, almost wishing I would have seen him but also realizing I am glad I didn't, who knows how I would be if I had. I am slowly starting to process all aspects of this experience in extreme detail until I can not wrack my brain with it anymore... Going to the gym has been very helpful . Ive gone 9/12 days and get on the cardio machine, turn up the music and go. I have been going minimum of an hour, and I am amazed at how much doing cardio and listening to music will get me thinking. Im realizing the gym is a good place to sort out thoughts, and any time I get angry or sad  I just pedal harder and faster...

Thursday, February 28, 2013

Mumbo Jumbo

I've gone to the gym 8 days of  14. I have found it to be very good for me. I get on any cardio machine, turn up the music and just go. I think through my day, my week, and everything else I have on my mind. When I get mad about our situation recently I just pedal  harder and faster. I will get closer to the healthy me. Im doing a lot of sorting still.... not only physically organizing , but my thoughts and ideas also. Ive gone into work a couple hours here and there this week just trying to get myself organized. Its been a slow work in progress, maybe only one to two phone calls a day and that's enough. Im realizing its hard to talk about much still. Im tired all the time still, I hope that gets better with time, and hopefully the exercise helps too. An hour a day of cardio should be plenty a day to keep the doctors away!