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.

Tuesday, June 4, 2013

Putting it bluntly

I always said I should write a book. Maybe that's what this is now. I thought it would just be about the fact that I lost a baby, X that, not just one baby, but 3 babies, but now Im realizing that this is just me. This is just my life. Day in and day out. I never wanted to be this person. I never wanted to depend on medications or go to the doctor all the time. But I drew the short straw I guess, and now here I am. I may be having a mini pitty party right now, but you know what? I am definitely entitled to one. I try to stay so positive, live day to day with no care in the world. But how can anyone honestly live like that when you have health like me. I cant wake up and just run out the door in the morning, I have to have plenty of pills lined up in my box if I am leaving for even just eight hours. Ive had to leave places early just because I forgot my meds, and without them  I can run into trouble. I get to spend my hard earned money on prescriptions and medical bills. The lab draws will never end with my clotting disorder, and I dont qualify to just have a yearly physical like normal people. Im pretty sure Ive seen my primary care physician  4-5x in the month of May. Some people never even go to the doctor until they are 40! And I have had my very own specialist since I was 10.

Now.... with all that, you add on normal everyday living, and it can just seem like a whirlwind sometimes. Im overloaded to be honest. Some days I just dont know how else to deal with it but get on here and vent. My poor husband hears enough, and knows all that I deal with. When it affects me it affects him. Me having to stop  halfway through a walk because I cant catch my breath from my heart beating so fast, or complaining all the time how my  stupid knee keeps bothering me, or my back that is so mechanically unstable and messed up its not even funny, the fact that my blood is too thin, careful not to hit me on the head, oops wait now its too thick take more meds so you dont clot to death....

 Last night I literally layed on the couch thinking I really should go to the ER or at least call the Dr on call because of my heart rate.... I was to that point that I just couldn't stand the constant pounding in my chest. I thought it was Anxiety so I took my prescribed Ativan, I felt calmer, but still had a pounding heart rate. No matter what I did it would not stop. I figured my potassium was low from the diuretic so I ate a banana and tons of orange juice, and everything with potassium I could find. Nothing helped. I was finally able to go to sleep after enough Ativan and woke up hoping to be cured. But first reading of the day is high.... Here we go again. After talking with my doctor he decided I needed to go back on a beta blocker to slow my heart rate down. Another medication added back to my list. And of course this one with the other one could cause my blood pressure to go too low so I have to watch for that. Plus gotta take the potassium because the OTHER medication depletes you of potassium..... again this is my life. Back to lying on the couch pondering the ER, all I could think about was cost. I already have 1 $1300 bill from my January stay, plus many others I wont mention in fear someone reading this will call and report me to my bill collectors.

What bothers me the most is that I have patients and a physician that depend on me and that need me. Other sick and ill people that need help and guidance. I love what I do, but sometimes it is just a lot to keep your thoughts straight when you are taking care of others so much you forget to take care of yourself.....I usually just push all aside and plow through....today was not that day. Today was a day I had to take for myself. I many times just wanted to sit in a corner and cry. From the way I felt, to having to get coverage so I could go get my prescription, to the damn overall picture of what is really happening to me. Reality blows and I will be the first to say it. I now need to have another imaging test called a Cat Scan Angiogram, and an echocardiogram to rule out any problems.....Now tell me this...... Who in their right mind would want something wrong with them?? Me. I would. Why? Because I am sick of not having answers, Im sick of throwing thousands of dollars away every year for medical care on something they cant find, and Im just plain sick of being sick. I want a normal life, I want children, but most of all I just want my health. :(  

Wednesday, May 22, 2013

Headed in the right Direction

Well I just got off the phone with my insurance company, and I am the happiest person alive! I originally called because it seems like my bills keep adding up with no payment and my deductible is only $1000. Turns out there is a glitch in the system that should have rolled 669.97 towards my co-insurance and then cover at 50%, but it didnt. So they will be reprocessing my claim, and I should get a refund for the difference. I also found out that after $100/deductible fro rx, they cover at 50%, but only if the patient submits the claim form. I had $800 of rx last year, but you have 1 year and 90 days to submit a claim, so I should be getting almost half of that back!!! Lastly I inquired about another IUD, but have heard these are $500-$600. This is my only option for birth control because they make the PARAGUARD with no hormones. I have been told "nobody should come within 100ft of me with prescription hormones, and if anyone offers tell them no!". Having hormones replaced in my case can increase my risk 10 fold for developing another blood clot. Good news is with the new healthcare reform this will be covered at 100% for me!

The Dr. I work for didn't think I should get another IUD, just to get it taken out in the near future (if we try for kids again) I think he is such a caring physician and I love that watches out for his employees. I love that I can talk to him about this stuff and get his professional opinion. So I am going to get one in the mean time while I have this other testing done. I would also like to continue to work on a new bill of health. If we were to try again, at least it can be planned and prepared for. My Dr. Keeps joking about having car washes and bake sales to help pay for my Lovenox when it comes time! lol I have already inquired to Sanofi the company that makes Lovenox about patient assistance for this medication.
I have had a productive day already. got up at 6am for a OSHA safety committee meeting, caught up on paperwork and charting at work, and all of this insurance nonsense before 11am!! I have also scheduled my eye appointment to check for eye damage from hypertension! I have not heard back about when to set up the other testing, but hopefully will hear back today.

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