Patty Knight

Good Morning and once again an apology for being so lax on blogging.  I hope that this blog will not only update everyone but hopefully be enlightening in regards to others with hidden disabilities.

Well first I will add that yes my cancer did come back.  Yes I found it on my own during my daily body checks.  Yes I went to the dermatologist and had it biopsied.  Although the very small bump on my butt looked ok it was the rock that I felt under the skin that was alarming.  To my surprise it cam back positive for nodular melanoma.  A new location and another occurrence.  Not the best news and so soon.  I quickly made an appointment is St. Louis with my oncologist and determined the best way to handle this was to remove it.  If I am lucky enough to have it all removed  I will be cancer free and if not then we move to the next plan…..some type of treatment.  Well God has blessed me once again and they were able to remove it all.  Back to checkups every three months instead of 6 months and hope that I stay cancer free, at least for a little longer than I did this last time.

In the mean time I have developed bone spurs on my spine that are growing into my spinal cord and into the foraminal outlets where the nurve roots exit the spine.  Why?  nobody knows for sure but some of my doctors think it could be related to my overactive immune system that is trying to fight off my cancer.  Whatever the cause it is causing sever problems.  I am in constant pain as the nerves are dying to my arms, hands, legs, feet, etc.  There are no narcotics that we have found to get rid of the pain it only lessens the severity.  I have lost my fine motor skills in my hands making it difficult to hold on the things like a pen, my phone, eating utensils, drinking glasses, etc.  If I use my hands too much I loose all the sensation in my hands. I have also lost the reflexes in my ankles and I am loosing the feeling in my feet.  I trip and fall, which is totally embarrassing!

I had surgery on my cervicle spine in June and they removed all the bone spurs and discs and put in implants.  The surgery did help some with the pain in my arms but the pain in my hands is still the same and I have not yet regained the use of them like I had.  The doctors say that the nerves can regenerate up to 12 months so I should keep positive.  I am scheduled to have the bone spurs in my lumbar spine and the foramina outlets cleaned out and discs removed and implants put in this month, this coming week to be exact.  This should help with regenerating the nerves to my legs and pain relief.  I pray it works.  Once I heal from this which they say can take up to 6 months we can discuss removing the largest bone spur yet which is in my thoracic spine.

As of today I have had 14 surgeries in my short life.  Please don’t feel sorry for me or think that this is a plea for anything other than me expressing my experiences in the story that follows but it is to help others see thing through the eyes of someone with disabilities.  (of course I expect my disabilities to be short lived as I will get better)

I wake up each day and reach for my bottle of pain pills on the night stand.  I know it takes about 20 minutes for them to start taking effect and it will take 2 hours for me to be able to get up and move well enough to take a shower and get dressed.  Once I actually get up I move slow and walk funny because I can’t feel my feet.  Its ok because I know the more I move around the house the feeling will come back slowly and I will walk a little more normal.  I am forced to get dress in cloths that will hide my large leg swollen due to lymphadema.  This is not too hard but finding shoes is another story.  I pretty much must wear flat shoes because I have lost my sense of balance and will trip and fall in heals.  I also have swelling issues with my feet especially the one on my right due to lymphedema.  I must get my shoes on so the swelling does not get worse because the right foot can swell up to a whole size larger than my left.  I then head to the kitchen for my first drink of the day so I search for the glasses with handles because my hands are numb and I have dropped and broke many of our good glasses due to the lack of feeling in my hands.  The biggest problem is with my thumbs they are always painful and I have lost the strength in them.  Oh but don’t worry I can pick things up such as glasses and soda can or water bottle its just that I will probably drop it at some point in the day.  Once I am up and dressed I find that I need to run to the store.  This now requires that I try to put myself together.  I usually just run around the house in a ponytail and no make up but that might just scare those in the store.  I start to put on my make up ad yep you guessed it.  It is very hard to put make up on and the eyeliner pencil is the worst to apply.  I typically drop the pencil, stick myself in the eye or make a line that looks like I have been drinking for a few hours.  I will finally get it but now I have to do something with my hair.  Next struggle is I can’t hold on to the hairbrush.  Ugh I drop it a few times, more like ten times!  Oh how I hate doing my hair but I finally get it done.  Know I am off to the store.  Yes I can drive, yes I can walk but I do it in pain.  Yes I can push a shopping cart.  It actually hurts less to walk when I lean onto cart so even if I only want to by one thing I will get a cart.  yes I can actually do most anything but I can only handle the pain for about 3 or 4 hours a day then I am stopped dead in my tracks due to the intense pain.  I can actually make it a little longer but I know that I will not even be able to get out of bed for at least a day if I do.  Then back home.  I can clean house, do laundry and cook but it is sometimes hard for me to pick a pan on the stove that is full.  I then take a break the rest of the day and evening going from the couch to walking around the house and laying in bed.  I can only sleep about 45 minutes at a time then I must move around due to the burning pain in my thighs and legs.  My family never really knows where they will find me in the morning. I could be in bed, I could be in another bedroom or on one of our couches.  Yep you do what you have to get through the day and night.

What I want others to take away from this is the following:

1. When you see me out at the store and you say wow you look great are you back to work?  NO and just because someone looks good, and appears to be normal DOES NOT MEAN THEY ARE OK.  You have no idea how hard it was for me to get out of the house and look normal.

2. Someone can look great on the outside but underneath is a broken body suffering in silence so don’t judge.

3. Once again I look good all fixed up but the average person does not know that I have 14 surgical scars under my cloths.  I look like a roadmap that went totally wrong. I have one leg much larger than the other, I have a hard time with every movement of my body. I am always smiling, why, because frowning takes more effort and crying does not make the pain go away.  The smile on my face took a long time to perfect and look real.  It is also a representation of the hope and the faith that I have that one day I will get better.  A smile does not mean I AM OK or that I FEEL GOOD.  A smile also keeps others from having me explain to them why I don’t feel good. I don’t want to repeat my story every day to every person it is a depressing story.

My request to all of you who are out there reading this post is that for your new years resolution this year is that you make the conscious choice not to judge others by outward appearances.  Many people are suffering behind that pretty face or pretty smile.  We have no way to know what others are going through or how they may feel.  Many individuals suffer in hidden silence and that is ok just don’t judge.  If they are not working don’t assume they can or should be.  If they don’t hold open the door for you maybe it is because they could barley open the door for themselves.  If they are slightly overweight it may not be due to being lazy but may a health problem that prevents them from exercising or maybe they have a health problem that made them gain weight.

Don’t Judge Others

As for me….I am so truly blessed.  I have the best friends, they are caring, they are supportive, they are always there to make sure me and my family are doing ok.  I am not sure why I was chosen to experience all that I have in my life but I am confident that there is a reason for it and I have learned many life lessons from this and my faith has only strengthened.  I hope that I can in some way help others to gain something from my words.  Life has many ups and downs and we all have issues everyday that we are dealing with so…. in this crazy messed up time lets search for positive thinking, helping others, and share that faith in God is the answer to all problems.  Even in those times you may feel alone God is there for us and will help us find our way through the troubled times and in the end we will be rewarded.

May God Bless you All and I thank each of you for blessing me in this life.  May your hearts be filled with the spirit of God through this holiday season.

Patty