CHD Awareness Week February 7, 2010

Starts today!
CHD is Congenital Heart Disease. Here’s a great website that explains it.

I’ve talked about Kristine Brite before. She’s the one that drew my attention to CHD. It’s the #1 killer of babies.
Anyone can have a baby with a heart defect. You may not know you have a heart defect until adulthood. But, Kristine lost her sweet baby Cora at only 5 days old.
There are several easy tests that can be done shortly after birth to detect CHD. The easiest being a simply pulse-ox test between 24-48 hours. Simple, non-invasive, and saves lives!

Read Cora’s Story. You will learn so much! And spread the word about CHD!

The aftermath February 6, 2010

Wednesday seems like it was a month ago. Yesterday feels like it was a week ago. Yesterday I had my first appt with the therapist. I can’t get in to see the psychologist the psych nurse recommended until March 8th. So, the therapist will have to do in the meantime. She was nice. The office was straight out of the 70’s. I sat on a couch, facing her in a chair.
There were times when I felt like she was trying to break me. Like, she wanted me to cry. I teared up a few times, but didn’t have the meltdown I thought I would. I was more nervous on the drive up there and sitting in the waiting room. She had my paperwork from the ER, so I didn’t have to break everything down.
It was nice to have someone listen. I think that’s why I was so calm once I got to see a dr in the ER. Because someone was finally listening to me.
She told me not to feel shame. She said I was strong for standing up and doing something. She asked me on a scale of 1-10 (1 being fine and 10 being bad) where I felt like my depression was. I told her a 5 or 6. She told me at the end of the session that I was closer to 10 then what I thought. She said if she felt I was getting any worse by the next session she would recommend inpatient treatment.
My next session is on the 17th. That’s a week and a half from yesterday. I chose that instead of a week because of the co-pay amount.
Jacob wants me to find a new psychologist that I can get into before the 8th. Actually he told me that he wants me to see someone this coming week.
Since the beginning of my depression (2005) doctors have always asked me if it was just depression or depression and anxiety. It’s always been depression only. In the days since Wednesday I feel like a different person. I’ve always been easily agitated, but this is beyond that. I feel my toes start to curl and my blood start to boil. It could be about something big or something small. I feel like I’m going to explode. I need something to take the edge off.
I scheduled a drs appt for Monday morning to ask once again for something to help me sleep. Thursday night I only slept for 3 hours, and that was after taking 2 ambien. I’m sure my PCP is once again not going to take me seriously. And I don’t even know how to get into the story of Wednesday. But, I feel like I need to because I want to ask for something besides the depression medicine. And obviously my dosage of that needs to be changed. I know the psychiatrist can change the medicine up, but I agree with Jacob that it needs to happen before the 8th.
I got to hang out with my family today and it felt good. I was scared that people would give me that sympathy look, but I think everyone understands that I would rather not talk about it. I want everything to be back to normal, but I know it’s going to be a long hard road.

Breakdown February 6, 2010

This is going to be a hard blog, but I need to do it. I’m going to start out with my journal entry.

2/3/10
It’s Lexi’s 9 month birthday.
I ruined it.
This day will forever be scarred by a melt-down, suicide threat, and trip to the ER.
This isn’t how it’s supposed to be. I’m supposed to be a beaming wife and mom. I’m not supposed to want to take my own life. A person shouldn’t fly under the dr’s radar until they threaten to take their own life.
Depression is real.
It’s really hard.
I feel so ashamed. I was so scared they were going to admit me to the psych-ward and I was going to officially be crazy. I feel like I’ve let everyone down. I feel sorry that my husband married me. I feel sorry that Lexi was given to me. They both deserve so much more. My mom shouldn’t have to worry about me anymore. I’m letting so many people down. I don’t want anyone to know what happened today. I want to be normal again.

I don’t know how to explain what happened. One minute I was fine, and the next minute I wasn’t. Jacob had come home for lunch and literally been gone for 20 minutes. Lexi wasn’t throwing a fit. The day was calm. The only way I can describe it is panic. I felt like Jacob was never coming back from work. I felt overwhelmed. The only way I knew to end that feeling was to end it all. I knew I couldn’t do that with Lexi here. I called Jacob and told him he had to come home.
I couldn’t stop crying and shaking. As Jacob left the room to start calling doctors, I sat rocking back and forth on the bed. He decided the best place to go was the ER. We dropped Lexi off with his mom, which I barely remember. On the way to the hospital I started to calm down. But as we got closer the panic started setting in again. This time because I was so scared they were going to admit me to the hospital and I would have to be away from Lexi. That’s when I realized it was her 9 month birthday.
By the time we got to see a dr in the ER I had calmed down. I still had to be evaluated by a psych nurse. She was super nice and gave me lots of references. I had to sign a waiver saying that if I left I would seek treatment and call 911 if I had any worries. I was also not to be left alone for 24 hrs.
The next day I didn’t want to get out of bed. If I got out of bed then it would be real. The previous day would have really happened. I also didn’t want to face anyone. I didn’t know who all in my family would stop by the house or call. I was (and still am) ashamed.

Effing links January 29, 2010

OMG, I don’t know why my links don’t work, but it’s pissing me off! I swear I’ve deleted them and put them back in so many times, and they still won’t work. For some reason it’s linking to my blog/the other web address…it doesn’t make any sense, and I don’t know how to fix it. But, I don’t want to go back and delete every single link. So for now they’re just going to stay that way.

How has PCOS changed me? January 29, 2010

Since I posted about what PCOS is I thought I would post about how it has changed my life. Prior to finding out about PCOS I knew something wasn’t right. But, I never envisioned that it would be something like this. When I first visited an ob/gyn because of my "period problems" I was told to go on birth control and when I was ready to try to get pregnant to come back. The ob/gyn at the time did no tests, ultrasounds or anything. Didn’t try to diagnose the problem, just tried to mask the symptoms.
I went on birth control for 2 years and then Jacob and I got married. We got married in October and in December I had a miscarriage. I had no idea I was even pregnant, but I knew the bleeding I was experiencing was not normal. After that I was determined to have a baby. When I went back to the ob/gyn I was told to "try naturally" for a few months and then he would do tests. Of course I knew it wouldn’t work….because my "period problem" was that I never knew when it was going to start or end. I would have months and months of spotting and then months of nothing, where I would get BFN after BFN. I finally went back and had bloodwork done. The bloodwork showed that I had PCOS. When the dr. called and gave me that news I immediately went to the internet to find out everything I could about it. My first feeling was anger. I had practically every symptom on the list, yet he had not tested me 3 years earlier. I was prescribed Clomid 50mg for my next cycle and immediately got pregnant! Only that by the time I got a positive pregnancy test I was already spotting. Called the dr. at 6:30 in the morning and was told not to call back "unless you feel like you’re bleeding to death." Thank God for Jacob’s Aunt Nancy who is a nurse and has had several miscarriages herself. She knew about this dr. and told me I needed to get out of there. She gave me the name Tracey Lakin. I immediately called and scheduled an appt. with her, but it was several weeks out. In the meatime I proceeded to miscarry. By the time I had my appt. with Dr. Lakin I had to explain over and over about the miscarriage. Dr. Lakin did lots more testing to confirm the PCOS. We did several more cycles of Clomid. Some worked and some didn’t. I ended up having another miscarriage under Dr. Lakin’s care. I have to say she was much more caring that my previous dr. She called me herself after hours to tell me what she thought was happening. (My numbers weren’t going up like they should. And while she was concerned about the pregnancy failing she was more concerned about my feelings.)
After several failed cycles we (Jacob and I) decided it would be best to take a break from trying to get pregnant. I was still taking Metformin (for blood sugar) and was told to "be careful" because sometimes Metformin can regulate your body enough for you to ovulate on your own. I honestly didn’t think that would happen because I had been taking it for a while and never thought I was ovulating on my own. I was going through some major depression issues and insomnia. I got medication for both of those. One day I told a friend that I felt like I needed to test. We laughed it off as having withdrawls from not testing in so long. I found some leftover pregnancy tests one night while Jacob was out. I found that to be the perfect time to secretly test and hide my evidence. To my surprise I tested and saw the quickest darkest line ever! I immediately headed over to CO to ask if old tests would give a false positive. They assured me that no it wouldn’t, but that I should test again. I had 1 test left and got the same result. I called Dr. Lakin the next day. The rest is history!
Wow, that turned into a fertility journey!
After having Lexi I’ve felt a whole new side of PCOS. Now that I’m not worried about infertility, I’m noticing all the other symptoms more. My weight is out of control. l have migraines that I can’t control. Insomnia is starting to come back. My thyroid is elevated. My blood pressure is elevated.
Apparently my latest fasting glucose/fasting insulin level was good because Dr. Lakin decided not to put me back on Metformin for now. I wish there was a "Women’s Dr." that’s not necessarily an ob/gyn. Someone who understands PCOS and will treat the "non infertility" side of it. I’ve been doing tons of research hoping to find the answers.

PCOS-polycystic ovary syndrome January 29, 2010

My journey with PCOS is a long one. It started way before I was officially diagnosed with it. But, I just want to break down PCOS and some of the things it can cause.

Polycystic ovary syndrome is a health problem that can affect a woman’s menstrual cycle, avility to have children, hormones, heart, blood vessels, and appearance. With PCOS, women typically have:
high levels of androgens.
missed or irregular periods
many small cysts in their ovaries.

About 1 in 10 women of childbearing age has PCOS. It can occur in girls as young as 11 years old. PCOS is the most common cause of female infertility.PCOS is the most common endocrine disorder among women in their childbearing years, affecting 6%, or MILLIONS of women.

The cause of PCOS is unknown. Genes are thought to be one factor. Women with PCOS tend to have a mother or sister with PCOS. Insulin is thought to be another factor. For many women with PCOS their bodies have problems using insulin sot hat too much insulin is in thebody.

Some symptoms of PCOS:
infrequent menstrual periods, no menstrual periods, and/or irregular bleeding
infertility
increased hair growth on the face, chest, stomach,back, thumbs, or toes
ovarian cysts
acne, oily skin, or dandruff
weight gain or obesity
insulin resistance or Type 2 Diabetes
high cholesterol
high blood pressure
male-pattern baldness or thinning hair
patches of thickened and dark brown or black skin on the neck, arms, breasts, or thighs
skin tags, or tiny excess flaps of skin in the armpits or neck area
pelvic pain
anxiety or depression
sleep apnea
I would like to not that these symptoms will vary from person to person. You may be like me and have almost every symptom on the list. Or you may have very few symptoms.
Tragically, many physicians see PCOS as a "cosmetic" problem when young women complain of the symptoms. Many physicians do not realize that PCOS has far-reaching and potentially devastating consequences.

Basically with PCOS, the ovary doesn’t make all the hormones it needs for any eggs to fully matrue. Follicles may start to grow and build up fluid. But no one follicle becomes large enough. Instead, the follicles remain as cysts. These cysts also make male hormones, which also prevent ovulation.

The treatments for PCOS will vary. For women who aren’t trying to become pregnant birth control pills can control menstrual cycles, reduce male hormone levels, and help clear acne.
The diabetes medication Metformin or Glucophage has been found to help with PCOS symptoms, although it is not FDA-approved for this use. Abnormal hair growth will slow down, and ovulation may return afer a few months of use. Recent research has shown Metformin to have other positive effects, such as decreased body mass and improved cholesterol levels.
Lack of ovulation is usually the reason for fertility problems in women with PCOS. Several medications that stimulate ovulation can help.Clomid is usually the first choice thereapy to stimulate ovulation.
Lifestyle modification Keeping a healthy weight is the main way to manage PCOS. However, when I was trying to get pregnant it was un-nerving to have drs. continue to tell me, "if you just lost 5 pounds it would help."PCOS can be managed with diet. But, PCOS also makes it very hard to lose weight. Even if you are on a very strict diet, with PCOS, the weight just seems to keep holding on.
The list of health problems associated with PCOS is as awful as the list of symptoms:
More than 50% of women with PCOS will have diabetes or pre-diabetes before the age of 40
Women with PCOS have a four to seven times higher risk of heart attack than women of the same age without PCOS.
Women with PCOS are at greater risk of having high blood pressure.
Women with PCOS have high levels of LDL cholesterol and low levels of HDL cholesterol.
The chance of getting endometrial cancer is another concern for women with PCOS.

PCOS doesn’t go away with pregnancy. There appears to be higher rates of miscarriage, gestational diabetes, pregnancy-induced high blood pressure, and premature delivery in women with PCOS. With the exception of gestational diabetes, I had all of the above. I suffered 3 miscarriages before I had a successful pregnancy with Lexi. Pregnancy induced high blood pressure eventually put me on hospital bedrest, and Lexi was born 4 weeks early, and spent 9 days in the NICU.

Possibly the worst thing I found while doing research for this post was a list of Women’s Health: State Rankings. The rankings are based on whether states have adopted 67 "key women’s health policies." The only one of these met by all the states is Medicaid coverage for breast and cervical cancer. Only 3 states met more than half of these policy goals. My state-Oklahoma- ranks 47. That was an F ranking. Go HERE to see where your state ranks.

If you think someone you know could be suffering from PCOS, please forward this blog to them. I so wish someone would have told me about PCOS while I was trying to diagnose myself.

I found the information for this blog at:
www.womenshealth.gov
www.herplace.com

People of the medical profession: take note January 26, 2010

Let me start out by saying that I did not go to medical school. The only medical things I know are the things that have effected me in some way and I have heavily researched.
Let me also say that I have PCOS (Polycystic Ovary Syndrome.)

Around September 2008 I became overwhelmed with life in general. I had gone through 3 miscarriages and felt that I was never going to have a successful pregnancy. My husband and I decided that we would take a break from trying to get pregnant. It had taken a toll on our relationship and we knew we needed time to concentrate on us. Since I knew we were taking a break from trying to get pregnant I went to see my PCP (primary care physician) about depression. I had an overwhelming urge to stay in bed all day every day. On days when I did get out of bed and go to work I counted down the hours until I got home. As soon as I got home I went straight to bed. Not necessarily to sleep, just to be by myself. That was when I started the journey of anti-depressants.
Pill #1: anti-depressant
Towards the end of my pregnancy with Lexi my blood pressure got out of control. That’s why I ended up on hospital bedrest. They thought my bp would even out after I had Lexi, but it never did.
Pill #2: blood pressure medicine
In the process of finding a new PCP I had bloodwork done. My thyroid level came back wonky. Said, dr called me to say in 6 months he would have it retested. 6 months didn’t work for me. I know hypothyroidism can be a side effect of PCOS. I called my ob/gyn who had bloodwork done and found that in fact my levels were still wonky.
Pill #3: thyroid medicine
Pill #4: birth control

I have had trouble sleeping for a long time. I remember having to take Tylenol PM while I was still living with my parents…around 2004? When I started taking anti-depressants I asked for something to help me sleep also. I was prescribed Ambien, no questions asked. When I had trouble sleeping during my pregnancy my ob/gyn prescribed me Ambien, no questions asked. When Lexi came home from the hospital I didn’t need anything to help me sleep. She was waking up every few hours to eat, and I needed to be able to wake up and take care of her. And by the time bedtime rolled around I was exhausted. Now that she’s almost 9 months old and sleeping for approximately 12 hours straight at night, I am having a really hard time sleeping. After she goes to sleep around 8:30 I start “winding down.” For me, it’s a process. There is no just go to bed and lay my head on the pillow and fall asleep. I go lay down betwen 9 and 10…fall asleep around 12 or later. Then, get up when Lexi gets up.

Fast forward to today:
Go to a new dr. He asks me the routine questions of when I go to bed and when I wake up. Well, there’s not really an answer for that because I fall asleep whenever I finally fall asleep, and I get up when Lexi gets up. I need to be able to fall asleep at a decent time because I never know when she’s going to wake up in the morning. He proceeds to tell me that he believes I am in fact getting enough sleep. Maybe I should set my alarm for 6 AM every morning and after a few days I’ll be tired enough to fall asleep. That I don’t sleep because I’m depressed. That I need to change the hours I’m trying to sleep.
Nothing was accomplished by going to see him. I understand that you can become chemically dependent on Ambien and other sleep-aids. I understand that he’s a dr. and I’m not. What I don’t understand is how the advice he gave me makes no logical sense. Did he think before he spoke? Did he know that I would leave there practically in tears because I was so frustrated? I’m tired of feeling like no one is listening to me. I’m tired of feeling like I’m a crazy person. But, most of all, I’m just tired.

Not that any medical professionals read my blog, but if they do:
Please think about your patient’s feelings. Please don’t treat people as if they are stupid. Please know that some people do know a lot about their conditions and the medications they are taking. Please don’t think that all people are drug-seekers who are just looking for a high. Some people really need the medications they come to you and ask for. Maybe they did a lot of research about their symptoms and think they have found something that could help. It is not at all polite to treat them as if they are stupid.

Hope January 25, 2010

I never knew about Anissa Mayhew until all the twitter chat after her stroke. But, since then I’ve been reading her blog, being kept up by her husband, and just being amazed at how God is working!
She is well on the road to recovery and will be home soon. They are trying to get volunteers lined up to stay with her during the day while her husband is at work and kids are at school. I so wish I lived near her. I long to help this person that I’ve never met. But, I guess my prayers will have to suffice.

Finger food! January 25, 2010

In the matter of a week, Lexi has gone from only being able to feed herself large things like crackers or the Gerber “wagon wheels.” Today she pretty much mastered “puffs.” We’ve been feeding them to her for a couple weeks now, but she couldn’t manage to pick them up with just her thumb and pointer finger, and get it to her mouth. She would pick it up and it would end up clenched inside her fist. But, today it was like a light bulb went off and she suddenly understood what she needed to do! I’m so proud of her!
Yesterday I spent a while making some baby food. I made sweet potatoes and carrots. Instead of putting them in the baby food maker I just heated them and then mashed them with a fork. Lexi doesn’t like her food too runny and I’ve been having to add rice cereal or oatmeal to everything. So, this left it with more texture. I also cubed up some carrots, sweet potatoes, and green beans for her to have for “finger food.” I can’t believe she’s almost 9 months old! Where did my teeny tiny girl go?!

blog4haiti January 19, 2010

After the earthquake in Haiti we have all been asking how we can help. For so many of us there is no way for us to physically go there and help. But, there are ways that we can help from home. As sad as it seems I’m positive there are a good number of people getting scammed by fake charities. Make sure before donating that you are donating to a reputable charity. Make sure there is a way you can be in contact with the charity after making your donation. They should have a phone number, address, and email address. You can also verify charities through websites such as: www.charitynavigator.org, www.charityguide.org, and www.bbb.org/charity.
Here are some legitimate charities I have found:
www.clintonbushhaitifund.org
www.redcross.org
https://unicef.org The U.S. Fund for UNICEF is absorbing all associated administrative costs so that 100% of every dollar you give to the U.S. Fund for UNICEF will support UNICEF’s relief efforts for children in Haiti.
www.mercycorps.org
www.care.org Your gift to CARE now will help us address immediate needs of survivors, and
assist Haitians as they rebuild their lives and communities in the future.
www.wecanbuildanorphanageblog.com
www.doctorswithoutborders.org has treated more than 1,000 patients in four tented facilities. The primary concern at the moment is the overwhelming numbers of people who need immediate treatment and major surgery.
www.yele.org Wyclef Jean’s charity
www.savethechildren.org
ajws.org/haitiearthquake/ The agency supports grass-roots, community-based organizations in remote locations whose needs are not always met by larger organizations.
www.americares.org This nonprofit disaster relief organization delivers medicine, medical supplies and aid to people in crisis around the world.
www.crs.org The money will go toward immediate needs, which includes water, food, hygiene kits, bedding and basic cooking utensils, among other items.
www.loveachild.com Monetary donations will be used for food, clothing, shelter, schools and medical needs, among other program services.

Text your donation:
• Text HAITI to 90999 to donate $10 to the American Red Cross
• Text HAITI to 25383 to donate $5 to International Rescue Committee
• Text HAITI to 45678 to donate $5 to the Salvation Army in Canada
• Text YELE to 501501 to donation $5 to Yele
• Text RELIEF to 30644 to get automatically connected to Catholic Relief Services and donate money with your credit card
• Text HAITI to 864833 to donate $5 to The United Way
• Text CERF to 90999 to donate $5 to The United Nations Foundation
• Text DISASTER to 90999 to donate $10 to Compassion International
I can’t even begin to imagine what the people in Haiti are going through right now. It has to seem like there is never going to be relief. I wish I could reach out and hug them, tell them that we’re going to make it better for them. It’s heartbreaking to think of the babies/children who have lost their parents, and the parents who have lost their children.
The thought of all these people being tossed into mass graves, and even thrown into piles of burning tires sickens me. I know they have to do something with the bodies, but it seems inhumane.
If you can spare a couple dollars, pick a charity and donate. You will never know how far a few dollars will go in Haiti.
Please donate, and donate safely!