PCOS Awareness

PCOS Awareness

Tuesday, February 3, 2015

2001 Was A Banner Year For Me

And by Banner Year, I mean totally awful in so many ways.  This is going to probably be a long post, so I hope you have some time.

In January of 2001, my husband had to go to Milwaukee for a training school related to his job.  I decided it sounded like a good time for me to have a vacation, so I went with him.  I know you are thinking Milwaukee doesn't sound like the ideal vacation spot in January, and you're right!  It was snowy and cold.  I knew that going in.  I was just relishing the idea of sleeping in, reading, and watching some TV.   We got there on a Sunday and everything was going fine.  I didn't really sleep in much.  I would get up and go to breakfast with Cameron before he would have to leave to go to his training.  We didn't rent a car because he was transported by bus to and from the hotel.  We ate at the hotel restaurant the first night, but the next night we discovered a mall right across the street.  Monday and Tuesday night we ate at restaurants in the mall.  It was a cold walk, but it was nice to get out a little bit.  On Wednesday night, we decided to see a movie at the theater in the mall.  We saw "Cast Away" and then we had dinner in the food court afterwards.  It was during that dinner that the s#it hit the fan, so to speak.  And it just continued on for the majority of the year.

I got a call on my cell phone from my Dad.  My Grandmother was in the hospital with pneumonia. She was a smoker and she had emphysema and COPD.  She had also had a portion of one of her lungs removed due to damage from smoking.  I guess that wasn't enough to convince her to quit.  She usually ended up in the hospital once or twice a year with pneumonia.  She decided to go out for a smoke (despite her doctor's orders not to smoke), slipped on the ice and busted her head open.  She was okay after a couple of stitches.  However, the doctors were putting a central line in her chest to help administer medications and they punctured her lung.  She died on the table and they spent 25 minutes trying to revive her.  When they got her heart started again, the doctors were pretty sure she was brain dead due to lack of oxygen.  On Friday, they determined there was no brain activity.  My husband and I got back home on Saturday.  On Sunday, my family decided to turn off life support.  She was breathing on her own, but the doctors didn't think she would last but a day.  I spent all day Sunday and Monday at the hospital.  On Tuesday, I decided to go back to work.  When I got home, I decided to make some dinner.  We needed some home-cooked food after eating hospital food for the last couple of days.  During dinner I got a call from my sister saying I needed to get to the hospital.  She died while I was driving to the hospital.  I was completely heartbroken even though I knew it was coming.  You think you are prepared for a loved-one's death in a situation like that, but you're not.

I was still not getting pregnant.  Plus, my face started breaking out like I was 15-years old.  My Mom read an article in a magazine about a disease called Polycystic Ovary Syndrome.  She gave me the article to read and I realized that I had multiple symptoms mentioned in the article.  I went to my OBGYN and asked to be tested for PCOS.  She did a couple of blood tests, but they were inconclusive.  She thought I probably had the disease, but she referred me to an endocrinologist for further testing.  Which begs the question, if she thought I had PCOS, why had she not mentioned it before?  Turns out, this is pretty common.  No one ever tells you about PCOS.  Most of us find out by reading an article or from a friend who has it.  Most doctors know little-to-nothing about this syndrome.  I think a good percentage of women with PCOS know more about the disease than most doctors.

The endocrinologist diagnosed me with PCOS and pre-diabetes.  She gave me the standard line about diet and exercise (which I was already doing and had been for the last 4 years) and prescribed Metformin.  This is the standard line of treatment for PCOS.  And that's about the ONLY treatment.  I didn't know much about the disease at that time except what I read in the magazine article.  Based on what I read, Metformin was supposed to help me lose weight and help me get pregnant.  Nope.  Not true.  It might work that way for some women with PCOS, but not me.  I didn't give this diagnoses much thought because I had other things going on.  My little sister was getting married in July.  I had a wedding shower to plan, I had to help shop for dresses, shoes, decorations for the reception, and all the planning that goes along with the wedding.

My sister found a beautiful dress with a 12 foot detachable train.  We went to a large bridal shop and found the bridesmaid dresses.  The bridesmaids were wearing lavender and our bouquets were going to be yellow roses.  They didn't have my size in the color and style my sister chose for me (I was the Matron of Honor and my dress was going to be slightly different than the rest of the bridesmaids), so I tried on the same style in another color.  The dress was slightly large on me, so I ordered the right color and the right style in one size smaller.  The dress came in about a month before the wedding, but I was so busy with work and wedding planning that I neglected to try it on. 

All of the bridesmaids were wearing silver shoes.  I didn't own any silver shoes.  I went to shoe shop after shoe shop trying to find some silver shoes.  You wouldn't believe how difficult it was to find a pair of silver shoes!  I finally found a pair with 6" heels.  Totally not my style, but beggars can't be choosers. 

About 2 weeks before the wedding I finally tried on my dress.  It was WAY TOO SMALL!  The bridal shop said it would take about six weeks to reorder it.  I didn't have that kind of time.  I took it to a local seamstress shop and they said there just wasn't enough material there to make it large enough to fit me.  They said the dress was about 3 times too small.  Because I'm a plus-sized woman, I can't just pick a dress off the rack.  Most places don't stock the plus-sized dresses.  They might have 1 to try on, but that's about it.  I returned the dress to the bridal shop.  I had no idea what I was going to do.  My sister's wedding was in about a week and a half and I didn't have a dress to wear! 

While I was at the bridal shop returning my undersized dress, I saw a couple of yellow dresses on the clearance rack for $25 each.  The dresses were too small, but they were close to my size.  One of the ladies at the seamstress shop told me her sister-in-law could probably make me a dress in the time we had before the wedding.  I bought these two yellow dresses hoping that she could piece them together into one dress.  She just had to add a couple of panels from one dress to the other dress.  I was so stressed out.  Between having a dress sewn and fitted, finding the right shoes, and getting ready for the wedding, I was a hot mess. 

I got up early on my sister's wedding day to go decorate the reception hall.  Then I went home and did all of the bridesmaids' hair and then I did my hair.  I don't remember much about my sister's wedding ceremony itself because my feet were hurting so bad from those ridiculous shoes.  After the ceremony, I went to collect my sister's things from the dressing room and I missed her and her husband leaving the church in the limo.  I was late to the reception and missed them being announced and their first dance.  I was happy for my sister, but it was one of the most stressful days of my life.  Looking back at all of the planning that goes into a wedding, I'm really glad that I decided to elope.

Life went on as usual for a couple of months.

My Dad had been having problems with pain in his ribs and back.  His doctor gave him antibiotics because they thought he had pleurisy.  He went through 3 rounds of antibiotics and the pain in his ribs and back only got worse.  One day in October, my Mom and I had gone to lunch together.  My Dad had a doctor's appointment later that afternoon.  I was on my way back to work and I got a call from my Dad.  He was almost in tears because his back was hurting so bad.  He wanted to know if I was still with my Mom.  I told him she should be on her way home, but if he was in that much pain he should call 911.  Being a typical man, he refused to call 911.  My Mom took him to his doctor as soon as she got home.  When he got to his doctor's office, the doctor gave him morphine and sent him to the ER.  A couple of hours later, I got a call from my Mom.  She said they had done a CT scan and found that he had tumors on his spine between his ribs.  I rushed to the hospital.

My Dad was diagnosed with Multiple Myeloma.  Its a blood-borne cancer like leukemia.  The cancer causes tumors and bone lesions throughout the body.  It also creates a protein that the kidneys can't filter which leads to kidney failure.  When my Dad was admitted to the hospital, his kidneys were functioning at about 30%.  The couldn't begin treatment for the cancer until they filtered some of the protein out of his blood.  They did plasma pheresis (run his blood through a machine to remove the protein and then return it to his body) on him a couple times a day for about a week.  It made him really nauseous so they gave him medication for the nausea, which made him sleepy.  He slept most of the week.  He ended up getting pneumonia and almost died.  He had to be put on a ventilator for a few days.  Those few weeks were the most stressful of my life. 

The rest of the year was spent worrying about my Dad.  He had chemotherapy, which got rid of the tumors.  After chemo, he started taking growth hormones to help grow healthy stem cells to be harvested for a stem-cell transplant.  Most people with Multiple Myeloma have a life expectancy of about 4 years.  I did a lot of research about this type of cancer during that time.  It didn't look good.

Yeah, 2001 really sucked.

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