Tuesday, May 29, 2012

managing pain with fills 1 & 2

So last week we had a sitter for a few days that I wasn't comfortable with, but was our only option at the time... she not only took too many long smoke breaks, took too many phone calls, and took a nap on my couch when she was being paid to watch the children... she also took quite a few of my pain pills!
So we are looking for a new sitter!

Last week was pretty tough,
 - Monday I had my 1st fill, they clipped the stitches and my right drain came out that afternoon. I had pressure, pain, then sharp stabbing pain from where the drain used to be.
 - Tuesday I had pain, pressure and sharp stabbing pain.
 - Wednesday was a bit better.
 - Thursday I was moving around a lot and not in much pain, especially after my other drain came out.
 - Friday I was feeling really tired but not much pain until that evening... that night it got so bad, I can only describe it as multiple heart attacks each hour.
 - Saturday when I dozed I would wake up to the heart attack feeling, and it continued all night.
 - Sunday I called the Dr and they suggested Ibuprofen until Tuesday for the "muscle spasms"
 - Monday I was a bit better...
 - Today (Tuesday) morning I was feeling good! Then I went to the Dr....

I thought they were going to check on me with my first fill, make sure my drains were out... nope!
2nd fill!
I was so glad my husband was there to cover my eyes for me and let me squeeze his hand again.

They put 25 in during surgery, 75 in the 1st fill last week, 100 in today... my goal is 500 so I have only 3 more if I can tolerate 100 each time... we'll see, I may make my goal smaller!
Today I was prescribed a muscle relaxer to help with the pressure and spasms...

Overall this time has been easier than last week, I think I knew better what to expect so I didn't freak out as much... as the day has gone on breathing has gotten harder, but still not as bad as last week!
The test will be the next couple nights...

Feeling Helpless...

I don't want pity!
I have gotten very frustrated with myself over the past few years because I am not able to "do it all" and I have needed so much help, but have forgotten how to ask for it.
I am one of those who hates to ask for help, I would prefer to help someone else.
I tried to live by the motto: "If you want something done, you have to do it yourself!"

This has caused a few snowball effects in the past few years...
With everything that has happened to me and to our family since the "kidney stones" in the middle of Ladybug's pregnancy and moving right after that... we still need to unpack and organize.
I feel more often than not that I am just another weight. Especially to my husband, but also to my parents.

As a person, a mom and a wife, the things that are hardest for me right now are:
 - having trouble breathing: sometimes I feel like I'm drowning, or there's an elephant on my chest... recently I've been feeling like I'm having 9-15 heart attacks an hour... these feelings are made worse by my anxiety attacks. I think caused by my feelings of helplessness and seeing those around me already taking on "my jobs" for me. So I do not want to burden them with helping me more, even if it's to sit up because I can't on my own most times.

 - struggling to pour my own drinks, get my own food, open my own vitamins/medicines.

 - not having the strength to carry my own purse/bag

 - struggling to open or close most doors (house and car)

 - needing help to buckle my seatbelt

 - asking someone to help zip my bra, pull my shirt up, or pull my pants up and button them

 - needing someone else to do my hair (washing, rinsing, drying, brushing, fixing)

 - standing/sitting helplessly by, asking someone else to help or hug my kids if they need anything...

 - begging my children to stop touching me because it hurts, while dying to hold them again...

 - accepting help even when it means I won't see my children for the day, just so someone is taking care of them because I have to admit that I can't do it alone right now

 - needing naps, it's a guilty, guilty pleasure

 - financially, I am costing us more right now. We have to pay for what I need to get better, we have to pay for other people to do what I should be doing, and we have to spend more on food because I can't make things from scratch. All this after my goal for this summer was to help us get back on track financially :(

 On a totally TMI personal note... I feel repulsive.
 - I have been trying to gain weight (I need to stay healthy to heal and I dropped weight really fast in the 2 weeks after I was told I had cancer, due to stress and going carb/grain free). So, I feel overweight right now as I am bigger than I have been in over 6 months.

 - I was a "late-bloomer" and I've struggled since my teenage years with my body not looking enough like a girl... right now, I have to add special shaped pillows so the outside world doesn't question if I'm a woman...
My son, Tweetle has been caught hugging, kissing, and carrying my special pillows... for his first 11 months, his only "lovies" were my real ones. I feel more guilty that I took them away from him!
I believe their original purpose is for feeding and comforting babies... I only hope someday my fake ones can again be the comfort my children crave when I can again snuggle them to sleep or help them feel safe.
My little Ladybug has handed the pillows to me and told me I needed them "to look like mommy again"... :'(

 - I can't use deodorant, I struggle to shave the basics, and my large wrinkly scars are still to frightening for me to accept them as a part of me. Just a few more things that make me feel like an awkward monster in my body.

I "knew" this would be a hard and painful process. I don't think I was prepared for this hard or this much pain and struggling.
I want to give up at least once a day, on a bad day it's more than once an hour...

Part of me is still glad that my kids are so little, hopefully even Butterfly will forget this nightmare.

I'm accepting that I need help, I now need to take that help so I can get better and later help others by paying it back or paying it forward.
I hope I always remember to be thankful for little things, because I never want to feel this helpless again.

Monday, May 21, 2012

Finding a sitter & my 1st fill appt

We have been looking for a sitter/nanny/ replacement me to be here when Hubby must work...
It has been an adventure. Over 30 people have been weeded through so far, Who would have thought that simple things like wanting them available the hours the ad said we wanted someone, or asking for an interview so we could meet them and they could meet the kids, or asking for their phone number would make so many people decide the job was not for them?
We found one wonderful girl, who was recommended and just isn't available all the time. She came today (first day) and we all love her so when she is free we will gladly have her.
We found a teenager in our neighborhood that will come help after school when she can, and my grandparents were also here today.
They all helped me interview an interesting girl that should be helping the last half of this week, but we all feel I should keep looking for a permanent helper.

Today was a rough day anyway.
See, I was starting to feel better last week. Exactly one week after my surgery I felt like I was on the mend! Taking less pain pills, getting outside to watch the kids play. I went to the store to get dance clothes for the girls with my mom & went grocery shopping the next day with Hubby and Tweetle. I was excited to be doing well.
Saturday night, Hubby took Tweetle to bed and then fell asleep himself before I came upstairs (poor guy has been working so hard). I didn't want to wake him so I tried to empty and strip my drains myself... I think I pulled too hard on my Left one, because it started to hurt that night, and its been hurting ever since :(
Sunday I took more pain pills. Today I went to the Dr.
They started by telling me that my incisions are healing well! I was happy, I told them about the discomfort and they decided to cut the extra long stitches from my incisions as well as the stitches on my drain tubes.
They warned me that my tubes could come out anytime now, and if I saw the white part of the tube to just pull the rest of it out.
I then got my first fill. Between seeing large syringes, the talk of using a needle and already being nervous, I all but passed out. Hubby kept reminding me to breathe while covering my eyes for me and holding my hand. (he really will do almost anything for me <3 ). It felt like a small elephant sat on my chest and started growing until I couldn't breathe. They gave me a minute and then did the other side too.
We got the kids from my parents, came home and I took another pain pill...
I started getting used to the feelings in my chest. Kinda strange sensations that were creepy/crawly on my chest, lots of pressure but no real pain except the Left drain tube.
Around lunch time I went to the bathroom, and then adjusted my bra because I had a weird tickle on my right side. I realized I was leaking on my right so the sweet sitter today helped me upstairs. we found that my drain was partially out so as the Dr has said she pulled it the rest of the way out. I have been having shooting pains for the last 4 hours since through my right side.

Now that we have this week taken care of with sitters, and today's is doing great with the kids I wanted to make an update and rest.
The hardest thing for me right now is wanting to be around the kids but being in so much pain when the kids touch me. So for now I rest, but I will try to keep letting you know how I'm doing.

**Thanks for all the support.
If you don't know, my friends have set up a site to raffle off donated items to help us come up with the money we need to pay for the sitter. We have enough money for this week and maybe half of next week already! I am thankful for friends, and all the wonderful people who are willing to help us out.

Tuesday, May 15, 2012

it wasn't NOTHING....

I’m a wife and mother, daughter, sister, friend… and just like most women I was already overwhelmed with life. I had reached my breaking point months ago with a lot of problems that “Life” had been throwing at us.

In February, we were starting to see the light, many things were coming to a point where they would again be manageable, not likeable, but we were able to breathe again and started actually looking forward and planning some happy moments. Then my (at the time, 10 month old) son had a temper tantrum and threw his head into my chest. One of those, it-was-never-a-big-deal-the-hundreds-of-times-every-other-day but this time it caused a lump in my breast. Over a month of weekly Dr visits that included ultrasounds and needle aspirations, and the only choice to help my pain and get answers as to what the lump was, surgery.

On April 6, I had a routine lumpectomy. Great, they said. We got it all, it’s gone. You don’t have to worry about it any more. WE TOLD YOU IT WAS NOTHING, they said.

On April 10, they called me. It wasn’t “NOTHING” … it was BREAST CANCER!!

I was in Trader Joe’s (a grocery store) with my 3 young children. All I remember after that was not knowing how many packages of hot dogs were going to get my kids through me having Breast Cancer…

I went to more appointments, met more Drs, went to an amazing “Second Opinion Breast Cancer Clinic” that had all the special Drs together in one room to talk to me at once and help me decide the best route for me.

On May 9, I had a bi-lateral mastectomy. I know you have to recover from major surgery… but I didn’t realize at the time all the things I wouldn’t be able to do and how tired just sitting in a chair would make me. A week later I am getting worried. My husband has been working from home, but we can’t afford that next week. He has to go back to work so we can keep our heads above the financial waters that the past 2 years have put us under.

I can’t lift more than 2 lbs for at least another week, then my limit will be 5-10lbs for another 4-6 weeks (depending on how I heal). I have to keep my elbows below my shoulders.

That means I can only get my kids cups if they are not in the cupboard, I can only get drinks if the jugs are less than half full. I can’t put the dog outside on the chain or bring him in. I can’t change my son’s diaper, I can’t help my 2 yr old in the potty. I can’t pull out supplies for the kids to do crafts, get them snacks that are kept in the top of the pantry, or cereal, or hold a pot of water to make pasta, or make mac&cheese, or cook chicken for dinner… the list goes on.

I need help.

I need to hire someone to be my kids stand-in SAHM until I can be again.

We figure 5 weeks, 5 days a week, for 10 hours while Hubby is gone, = 50 hours/week.

$8-9/hr is $400-$450 a week, $2,000-$2,250 that we just don’t have.

So I have a friend who is trying to help me raise that money so my kids can get through this difficult time too.

Because as a mom, my first thoughts are getting my kids through this. If I can have help to get them through, then I can get myself through.
Then our Family can again start looking forward to planning some happy moments :)

Sunday, May 13, 2012

Fighting is bad... except when it's good

Let me start by saying I love my children.
Like most mothers, I didn't know the extent of the powerful love that comes when you hold your child in your arms for the first time. During pregnancy (or adoption or however you become a mother) you start to love the idea, and you may start to love the child... but the moment you hold *your* child, the love is almost overwhelming.
When Butterfly was born, it was a horrible experience in terms of having any support. My ex-husband and his family wanted things to go smoothly... for them. For me to raise the baby so she doesn't wake them or annoy them with crying, don't do anything out of the ordinary because when you have to explain your choices, its annoying... you know as long as she & I fit in this "perfect" mold, then everything would be ok.
Only it wasn't... I wasn't perfect and they didn't think she was either. Within weeks I learned to start thinking that maybe I was strong enough to make decisions that might be different from what they wanted. Then I started acting on them. By the time she was a few months old there were serious fights (mostly verbal and emotional) about what should be my decisions because I was the only one who had to put the work in or deal with the consequences.

When I found my voice and fought back to do what I truly thought was best for my baby, it tore things apart. We continued to fight about who was right and who was wrong for months after he packed my bags and I left.
We agreed on a dissolution when she was 2 1/2, right after I met my husband, then I was married, Butterfly turned 3 and then my ex-husband decided to start using his time to see Butterfly. I could only fight to help her through the changes, not to fix it.
But then he blew up one night at the end of a visit, about wanting her more and drug her into it, and I found myself fighting to not have my daughter hate me for what he was telling her. I was fighting for my child to believe me that I wanted what was best for her, I felt that I was fighting for my daughter to still love me.

He took me back to court and for a year and a half I fought. I fought to make sure that he was going to have to be responsible when he had her. I fought that he would feed her real food and not junk, with the backing of the pediatrician. I fought that the counselor was right and Butterfly had stress-induced anxiety. I fought that she needed help coming out of her new shell, that homeschooling was best for her, that I was still trying to socialize her. I fought that nothing else was wrong with her, leading to me fighting to prove she did not have autism, just too much stress. I fought that the stress was not all my fault. I fought that me adding a baby sister and baby brother was equally as hard as him adding a baby brother to her life. I fought until there was nothing reasonable left to fight. Now with a final court order I hope there is no more to fight but to help her through the back and forth of a more typical arrangement.

During this time I fought through 2 pregnancies as well. My pregnancy with Ladybug led us to fighting through my husband getting a new job, that required travelling. I was really sick during her pregnancy and had to fight the urge to move in, un pack, and settle in to our new house because fighting to get through each day was more than enough. I fought to keep friends for myself and for Butterfly. I fought the hopelessness of the post traumatic stress from her pregnancy that just got worse when I found out I was pregnant again and then the court battle started.

All the appointments and phone calls and time I had to spend looking things up and typing things out and keeping records. All the time I spent trying to find more ways to pinch pennies so they we could afford to keep up with the appointments and therapies, as well as to get through court and keep the attorneys.
Everyday I had to fight the guilt, I felt like I was missing out on my children s lives.

So I started looking forward to this summer, summer of 2012. I was going to have my kids help me plant a garden and start doing projects around the house. We were going to start a much more fun Home school curriculum with science experiments and projects. We were going to have at least one field trip a week and hang out more with friends. We were going to NOT FIGHT...

Then in February, something happened. In March the court battle ended as I entered a fight to find out if I was going to be okay. In April I had surgery, and it seems the stress has gotten to me and my body couldn't handle it. So now I am fighting this summer. I am fighting in hopes that I will have the rest of my life to enjoy not fighting anymore. So I just had major surgery to remove the rest of the problem and now I am looking down a long road of recovery. One that includes me fighting myself and my own feelings because a major part of the recovery process includes doing something that is going to be a discussion point with my daughters and I with me being on the side against what I am doing.

Fighting for your children is right, fighting to have your children is right, fighting for better quality of life is good, and fighting for what you believe in is right... so for my family, my children, and myself, I will keep fighting this fight.