It amazes me how easy it is for people to jump on the Negative Nancy band wagon. They don’t see things with their eyes and therefore it must not be true. Here recently I haven’t felt myself. Everything around me is changing. I have had friendships ruined by actions that were neither right or wrong. Things have been done that can’t and will not be changed. My wedding planning has completely fallen apart. I have to put so much off that I really don’t want to and honestly it is tearing me to pieces. I have been in touch with a surgeon in Germany who specializes in my condition. He is the best and has been doing these surgeries for a long time. I know that he can help me and I also know that he will give me my life back, but of course that comes with a cost. My fiance and I have been talking about this for a bit and came to the conclusion that my health is far more important than a wedding and reception. People who love us truly will be the ones to understand. I have come to learn that there are people out there that understand what it is to have a chronic condition and then there are others, they are the ones who are comparing you with all the people that have visible conditions such as cancer. That is a ugly word. And disease…. any disease is just ugly.
The other day after I was done with my PT , I was feeling really tired and very sore. Even with my weight I was never really slow. But this was a slow day… my body just hurt to move and by the time it was bedtime, I was in tears. My fiance tried to help but I didn’t even want him to touch my legs, they were so painful. It reminded me of when I got hit by a drunk driver. That pain was horrible but I managed to push through and eventually it was gone and my body healed itself. It’s a harsh reality knowing that my body is not going to heal itself this time. That the pain I have will be there sometimes not as bad… but it will always be there. I pray that this journey to Germany is going to help me and not set me back. There is always this part of me that is going to question whether I am truly going to find relief and feel better. I can’t take hormones now and that is proving to be a disaster… I am cranky, moody, miserable, emotional..irrational. What a pain in the rear I must be around those that love me.
I feel like lately I am being forced to make decisions that are not fair. I can’t imagine some of the choices other people have to make. How hard it must be for them to make decisions based on a loved ones health and well being. I am lucky enough that I can make those important choices on my own, but of course there is always a price to pay. There are paths that we have chosen in life and then there are paths we are forced to take. I wanted to have a beautiful wedding, put a nice bit of money down on a house and pay off some bills. Now I have to choose to pay a doctor in Germany to do a few surgeries so that I am able to live a more healthful life with my fiancee and our kids…. it is the best choice because that means I won’t be in a wheelchair and I will be able to do things with my loved ones longer. Not the choice I wanted to make, but it is the choice I have to make. I hope that people will be a little kinder in the future. I hope that people can have more compassion in their hearts towards those who suffer a chronic illness. I hope that there will be understanding that even when there is a smile on my face, even when I say I am okay… I may just be saying that just to get through the day without the questions or the glances. I will not break from this. I will always be strong enough to fight, and always strong enough to bend in whichever way is needed to make it just one more day!
When I was a little girl, about 5 or so I lived with my family in a small town. We lived in in the middle of a orange grove in a single wide trailer. My fondest memories are from those days and not because things were great for us, but because we had so many animals that it was truly our own little farm. We had Tom the Turkey who was the meanest turkey ever. We had a goat, chickens, cats, dogs and then there was Miss Piggy. Miss Piggy was my favorite pet. She had a personality that to this day has stuck with me. She was cranky when she didn’t get her way. She was affectionate to those who loved her and showed her love. She was just like us kids. If we got snacks, well Miss Piggy wanted a snack too. If we went for a walk, Miss Piggy went for a walk too. She protected us kids. She would walk with us each and every morning to see us get on the bus and when we came home from school she was there waiting. Miss Piggy loved us unconditionally and that PIG was family!
Eventually Miss Piggy was no longer with us and that was probably one of the things that hurt me as a child…. not having that pig around. She was my co pilot in all things. If I did cartwheels she would squeal in delight. If I ran she wasn’t far behind. If I was sad , she sat by quietly and would watch me and sometimes she even came and cuddled close to me. This Pig was a giant. She was large and she was red with black spots. Sometimes I could ride on her back and hold on for dear life because she loved having us on her. She teased my mom by throwing temper tantrums, she would root in my moms flower beds and gardens. If there was danger nearby, such as panthers or stray dogs she was our alarm and protector. Miss Piggy was and still is one of the best things of my childhood memories.
I have thought often of my childhood and my teenage years lately. I am puzzled as to why we don’t have handbooks that warn us of the dangers of hormones. Now days chickens are injected with things that some scientist believe makes our young girls grow faster, and perhaps have larger chests than that of my youth. We are all warned not to smoke, but in my childhood there were advertisements of cigarettes on TV and in magazines. We are warned to eat healthy to reduce risks of heart attacks and diabetes. If hormones have such an impact on 11% of women, that it makes us severely obese and disabled….where are the warnings? My hormones have never been NORMAL from the very start of puberty. So the doctors in turn give me a pill to take that now has caused me to be nearly handicapped at 41. All the doctors I have visited and not one of them could link hormones to my issues. I just can’t believe that there are very few doctors out there that can see the pattern when it affects so many women.
Sometimes I wish that I could go back to those days of running in the fields with Miss Piggy and Tom The Turkey, I wish I could tell that little girl to keep running, keep doing those cartwheels… stay active. Forget about those hormone shots because they wont help you. I wish that I could have been myself more instead of being what society was trying to make me be… I would love myself more back then, and quit listening to all the people who constantly was telling me I was fat, when in fact I was nowhere near fat back then. As I write this I am awaiting a email from a doctor in Germany who will understand exactly how I feel and he will give me hope again. I know that I can’t go back to my childhood, but if I could I would just slow down and be patient with myself a whole lot more. I would enjoy those moments a little longer, and I would speak up a little louder so that my doctors would listen a little better.
I sure miss that PIG!!! Til next time!
Maybe I can talk my fiancee in to getting me a cute little Miss Piggy 2 down the road…. a girl can only hope 🙂
The last week has been crazy. I’ve had many up and down moments. One thing I struggle with here lately is realizing that I’m not the same person, in the last year so many things have changed. For one,last year I didn’t have a problem walking around. I may have tired after a while but certainly not after just minutes. That makes me sad. The struggle is real. I even skipped therapy this past week. Why you ask? Because I actually needed a break my body seems to be fighting me constantly in every way. I’m constantly reminded of the things that I cannot do that I didn’t have a problem doing last year. Wedding plans have slowed mostly because it’s just hard for me to get excited when I’m fearful of being able to walk down the Isle. I don’t want to be one who gives up. I don’t want to lose my mobility. It’s a scary feeling. Just knowing that everyday the pain that I feel in my legs will only get worse. The heaviness that I feel in my legs won’t go away the burning that I feel in my legs won’t get any better. The pain that I feel in the bottom of my feet ,the pain that I feel in my knees. The exhaustion. Every since having my hysterectomy I have been struggling. If this all changed in that short amount of time,just nine months… where will I be 9 months from now? I try not to focus on it. I only try to think about each day . If I can at least try to accomplish one good thing each day that will help me stay mobile then I am making progress. These days the effort is hard to come by. I am shocked by the person that I am. I visualize things so differently but yet when I look in the mirror I see things as they truly are. I made progress this week by posting pictures on a special site with ladies who were just like me. That actually put a smile on my face. It made me feel better, they all have the same exact condition that I do and they’ve all been walking the same path I have. Some are in a lot earlier stage than I am and that has to be something to be thankful for. They can do something more for themselves to keep it from progressing. Me? No such luck. I’m already stage 3- 4 and that sucks. I look at pictures of myself from when I was 20 I only wished that somebody would have stopped me from putting all those needles into my bottom so that I could have a baby that I would never have. I wish doctors would have said hormones don’t seem to be doing you any good. Maybe just maybe I’ll be walking around a lot better right now.
Each day I go through some sort of therapy. Some days I feel really great. .. others not so much.
It’s a new way of living. Each day I’m working towards a goal. I just want to stay mobile. I learn how to shop for clothes that will be helpful to me. I wear shoes that will work with my bandages. When I dress in the mornings I have to select clothes that will work with whatever therapy I am having for that day. It’s always exhausting. I keep on keeping on though because I refuse to give up. I refuse to let it get to me. I refuse to allow myself to be judged by the stereotypes. I will try to educate as many as I can. I don’t care how often I sound like a broken record.
I have found a song that I feel explains exactly how I feel and what I will do from here on out. I will share it with you today.