My Story

Along with hanging out in the Lupus forums I was introduced to an incredible woman. Her name is Loni and she has been living with Lupus for 40 years. I was becoming this doom and gloom person who was always focused on my health issues. Talking with Loni was the kick in the butt that I needed.

My one and only conversation with her would change my life forever. During our phone call she told me all about her life with Lupus from beginning to end. Lupus turned Loni into a human zipper as her husband would call her because she had so many surgeries. The disease also took away her ability to have children but through other blessings they were able to adopt many children.

Loni shared with me how living with Lupus can be difficult because sometimes a person cannot see externally how the disease is affecting your body. Humans decide that if you don’t appear broken on the outside then there is nothing really going on inside, wrong.

Her story was amazing and motivating. At the end of our conversation I would ball my eyes out and then kick myself for being such a whiner. I have not even experienced an eighth of what Loni has been through and her attitude towards life was incredible. I needed to quit the crying and take action because I don’t have full diagnoses yet.

In the end Loni pushed me to grasp one thing. If this anticoagulant turned into Lupus I needed to focus strongly on caring for myself and my energy. This required me to learn how to say no. Loni stressed that if I was tired or not feeling well don’t do it. Even if it might hurt the person you are telling no that person should understand that you just can’t. Otherwise your body will suffer the consequences for months.

Loni had many other tips for me to follow but the main one I wanted to share was saying no. I think women have a difficult time with this and suffer in the end. Saying no is not bad and we can’t do it all. Besides if your body is wasted due to fatigue how can you continue to take care of all those that you love in the long run anyway.

After talking with Loni I felt ok. If she can live with this disease for 40 years then so could I. I’m still going to do everything in my power to make sure the Lupus does not develop but if it does, Loni made it not so scary anymore.

Disclaimer… This material is subject to our Terms and Conditions Policy. Please view our Terms and Conditions Policy on our site.

8/20/10

More reading

Starting Over After a Missed Miscarriage

Due to Confusion I Edited a Page

My feelings of regret eventually turned into sadness. I am totally frustrated with the world at this point and feel like any signs of my old life are gone.  I had gotten a job at Talbots a few months prior to get out of the house. I went back to work the same week of the miscarriage. I loved working for Talbots it was a very fun environment. Some of the customers were a bit snooty as a lot of them were the professor’s wives from the nearby college but it was fun to dress them.

On the other hand within a week I couldn’t stand their personalities anymore. I remember thinking about the baby while some lady was having a hissy over a small pull in the sweater she had purchased. I remember wanting to smack her because you practically had to get the magnifying glass out to see it.

After everything I had been through I couldn’t listen to the pointless complaining anymore. Ladies there are worse things that could happen in this world. I quit a month later.

I’m also back in the Neurologist office during this time to get the results from the lab work he had done. Dr. Gaffney was a breath of fresh air after the last Neuro. He is old and doesn’t have much of a personality but somehow we connect well. I wish I could ship him to California so that I have him back.

He tells me that I tested positive for Lupus Anticoagulant but he thinks that it has something to deal with the missed miscarriage. On the other hand this clotting disorder could be why I had such a nasty miscarriage. I will need to be retested to see if he is right. The problem with a Lupus Anticoagulant positive is I could only focus on the first part LUPUS. He assured me that all would be ok but I didn’t trust what he was saying.

Lupus Anticoagulant is an Antiphospholipid syndrome which is a condition that can cause clotting within your arteries or veins and various other problems.

Dr. Gaffney told me this and even after reading about the condition on Google all I could focus on was the Lupus part, mainly because Lupus Anticoagulant turns into Lupus 50% of the time.

I didn’t have my positive thinking cap on then so all I could focus on was that chance that this syndrome could turn into a bigger monster. Not the fact that it could stay the way that it was.

I joined Lupus forums and told my story. I had many wonderful responses and guidance from ladies that are living with Lupus. I met a few who were suffering through my worst fears. Their anticoagulant turned into Lupus.

These women were wonderful and so caring but there is no way that I wanted to end up like this. Some would post photos of hair loss which had happened to me already and rashes. These images scared me into changing my life.

I learned everything that I could about Lupus over the next month. I spoke to as many women as I could to hear their story and see if there was any way to stop Lupus before it strikes. I found a few things I could change to help myself were diet and stress.

This period in my life is where I look back and say this is the time of Gods bigger plan at work. Having this fear of getting full blown Lupus kicked me in the butt to change my ways and I strongly feel that this is why I am doing so well today.

More reading

Regret

Learning to say No

Disclaimer… This material is subject to our Terms and Conditions Policy. Please view our Terms and Conditions Policy on our site.

6/25/10

I have been blogging for a little over a year now. When I came up with this blog I tried hard to think of a good name that would go with the issues that I was going through. In picking Post Partum Illness I never thought about the fact that people would immediately assume this blog was all about depression, it’s not. I just knew that I became ill after giving birth.

In fact I was never depressed after having children. I loved the fact that I had babies. Before things actually started showing up in my blood work the docs did keep telling me that it was anxiety and depression. When I started this blog I was wondering how many women were going through what I went through? When starting this blog the symptoms had finally surfaced into a problem that was obvious. How many women have been diagnosed with depression and they really do have something physically wrong?

I’ve come to find with a few doctors that when they don’t know what is wrong with a patient they tell a woman that she is depressed or stressed. In fact these doctors are really confident about the diagnosis. When you head back with results from another doctor or they screw you up with depression pills suddenly medicine is all practice. I wish these doctors would retire and just let the good ones who actually care do the work.

Here is the link to my updated about page.

5/21/10

Disclaimer… This material is subject to our Terms and Conditions Policy. Please view our Terms and Conditions Policy on our site.

I don’t really remember the drive home from the hospital or the days that followed. I just remember a feeling of shock and what the heck was going on with me. I was as healthy as a horse for years then my life turns into constant unexplainable health issues.

I was also filled with regret. The things that had happened to me over the past year some people don’t even experience in their life time. I had all these rare things happening to me and some people were questioning how much was really true. Some people were frustrated because they guided me to be patient on getting pregnant and I didn’t listen.

It’s sad when you can see disbelief in people eyes as you are telling a story. I mean I guess it’s hard to believe that your body can hold onto a baby for 3 months and then decide to miscarry. I wished that I could carry a paper around with me proving my blood work and doctors diagnosis on it to show that I wasn’t crazy.

It’s my fault that I have to suffer from people opinions. After all I am a person who is usually an open book with my life. If I kept my mouth shut then my personal issues wouldn’t be up for debate.

This is something that I am still working on today. I don’t care if the world knows my health issues but there are other personal things that I wish I had never thrown out there. I get sucked into these heart to heart conversations with women and end up regretting it.

Looking back on things I wish that I would have had the strength to only share my personal health journey with my family and best friends until I had more concrete information from the doctors. I was so distraught and impatient that I was talking to everyone to try and find answers. People were receiving information in jumbled parts instead of the whole story and I imagine it got confusing.

I still was figuring out my relationship with God too. If I would have had the understanding of how God works back then I know I would have made totally different decisions.

This happened almost 4 years ago. During that time I was filled with regret of pushing my body to far and opening my mouth to people that I shouldn’t. Interestingly today as I write this I am filled with regret. It’s on another situation that is totally different but I again opened my mouth on a personal issue with people that I thought I could trust and I regret it. Hmmm when will I learn?

2/28/10