Out of surgery

3 06 2017

Well another surgery done. Just like last time I went in to have one lesion removed and by the time my surgery date came around I developed another lesion. I am seriously stitched up like an old hand made quilt that has been repaired one time too many.  This time it was on my upper thigh so it pulls on the stitches every time I try to sit down. I am trying to be easy because last time all the stitches tore open and it took about 3 months to close up and heal. I defiantly don’t want to go through that again. My chronic lymphadema is also out of control due to the surgery. Good news I made it through another surgery. I will start my immunotherapy injections on June 12th.  I will have injections every three weeks and it will take about 2 hours for each treatment. The doctors are talking about 6-12 months of therapy.  I just hope I can tolerate this and that it might keep the cancer away for more than year l!  I’ll post again after my first treatment to let everyone know how it went. I’m going to just believe it will be a peice of cake with no residual side effects.

Another positive update……my eyes are still really bad with the pre retinal detachment in both eyes and cataracts in both eyes from the chemo. I will have to be followed closely for as long as I live but they have finally stabilized.  Wooohoooo I was finally able to order new glasses so that I can see.

Wishing everyone a fantastic weekend and asking that you all will continue to prayers for my friend Peggy. She needs all the prayers she can get as she continues to fight off two different cancers.

Thank you and love you all.





Latest News:

22 05 2017

Well as most of you already know I am not very good at this blogging.  I take entirely to long to write between posts.  This is still the best way to keep everyone updated even though it takes me such a long time to write between posts.  First I would like to ask all those who read my post to say a prayer for a friend who is going through more than anyone should every have to go through.  She was recently diagnosed with two different types of cancer.  She has had surgery and is currently going through chemo and radiation.  I know this is very tough on her but I am confident God will see her through this.  She is a beautiful person inside and out which makes it so hard to understand why. God has his reasons that which are only known to him.  Maybe he just needed a few more good people to be an inspiration to others!  I am not sure but please pray for Peggy as she needs all the prayers possible.  God listens and he answers.

As for my update.  I found out that once again my cancer has shown its ugly face.  I am having surgery on the 2nd of June to remove it.  It just doesn’t want to go away and stay away.  I guess it just really likes me.  I am going to start immunotherapy  infusions on June 12th.  The infusions will be every three weeks and they will take 2-3 hours each visit.  I am hopeful this will be easier than the chemo which did not work well for me.  I am still trying to adjust to my vision changes!  I am sure that I will get rid of this again because I have way to much to do in this life.  The potholes in the road of life are showing up a little to frequent for my liking so I will be praying that God sends a road crew down here to fix the potholes, at least for a while.  I need a break.  I was really hoping to write about getting my neck surgery done.  The implant I had put in did not fuse and is causing the nerves in my arms and hand to die, and I continue to have large golf ball size knots that come and go on the back side of my neck which is really painful. I am now on hold for that surgery until I finish the immunotherapy.  I am really not sure why they don’t like to operate on patients with cancer or in therapy.  I think if your going to feel bad just go ahead and do it.  Well I guess we will see if I can talk the neurosurgeon into it anyways.  Never hurts to keep asking right!  So on a good note I am B-Raff + which is typically a worse diagnosis than being B-Raff – but there are more treatment options for B-Raff + patients.  This means that even if it keeps coming back I can try other things to stop it.  I am getting worn out pretty easily these days and the pain from my neck problems is getting worse.  I don’t get to sleep much so I am always tired.  I have switched to plastic cups or metal water bottles because I seem to drop everything.  I am tripping and falling a lot more, which is totally embarrassing.  A real train wreck but I am sure I too will get through this soon enough and hopefully better days are coming.  Yes, I am still smiling, still holding true to my faith in God, and live each day appreciating it as if it were my last.  Pray, Pray and Pray.  Don’t forget God is your best friend and he is always waiting to have conversations with you too.  If there is one thing I can not preach enough of it is that we all need to appreciate and make the most of every day.  Say I love you more often, pick up the phone or write a letter to those you have not had a chance to talk to lately but you think about often.  Make a bucket list and start checking off those things on your list.  Why wait……we never know when our time will be up so let’s make the most of each day.  Throw any anger or stress out the window.  There is no time for silly games.  Be happy every day.

A practice I started about 5 years ago is a good one for everyone to try.   Each day wake up about 15 minutes earlier than usual.  Get up grab a cup of coffee, or whatever you like to drink, and go outside or sit next to a window where you can look outside at something beautiful.  Take these 15 minutes to list everything you are thankful for.  Do this every day and try not to repeat anything you mentioned the day before.  You should continue doing this until it becomes a habit.  You may think it will be hard to think of things you are thankful of for 15 minutes every day but you will be surprised at how easy it actually is.  I can promise you this, you will start your day off in a good mood, you will be more awake and alert and you will find in time that even on your worst day things won’t seem as bad because you will think back to all the good things you were thankful for earlier that day.  Just try it for one month and see how it changes your moods each day.  You will look back a month later and see that you are not so quick to anger, the little things that used to drive you crazy will seem almost meaningless and your overall health might even improve.  Try it out and let me know what you think.   I am not a morning person and never have been so getting up 15 minutes earlier was really hard.  I constantly wanted to hit the snooze just one more time but then I would tell myself is 10 or 15 minutes going to make me any less tired?  The answer to that question was always “no”.  I would still be tired when the buzzer went off and I would still want to hit snooze again and again.  Eventually I started looking forward to getting up earlier.  I was much more alert when I headed out the door to start my day and I was happier.  I can’t wait for you to try this. TRUST ME….you will find this helpful and if you have a nice view while practicing this it is even better.  I choose to look out over my garden and watch the birds as they fly into the garden to feed.  There are so many beautiful birds and my favorite are the hummingbirds.  It is almost that time of year for them to be showing up again.  I am not much of a winter person but I have found that just looking out at the barren trees can be beautiful too.  It is a reminder of how God gives our planet a rest and after a long winter he will renew everything again.  The cycle of the plants, trees, insects, and animals is very beautiful and interesting.  How much time have you spent just watching mother nature at work?  Probably not much.  This 15 minutes a day will give you a whole new appreciation of nature as well.  Ok enough about this.

I want to thank everybody who takes the time to read these posts.  I am thankful to all of you and pray that each of you have a blessed week.  Take a deep breath and smell the spring air, take notice of all the plants that are beginning to bloom and remember to smile it is courageous.





1 month of Chemo Completed

23 02 2016

What does one month of chemo feel like?  I am sure this is a question that is answered differently by each person who has taken chemo.  I can only say what it has been for me.

The first week I did not feel much different but by the second week I began to feel some changes.  I began noticing changes in my vision.  I first noticied it was getting harder and harder to read items on my phone.  This was not to alarming at first but by the third week I could no longer read anthing up close that was in small font.  According to the side effects noted on the informational incert from each drug this seemed to be a somewhat common experience.  I also began to have terrible stomach cramps, diahrea and vomiting.  The cramps would come after eating and soon the diahrea would follow.  I would on occasion have vomiting as well.  Once again this was a side effect noted on the insert.  So far not to much that was alarming.  I then began week 4.  No changes here just an increase of the frequency of diahrea.

I followed up with my oncologist, had all my blood work done and discussed the side effects of the chemo.  The labs had some slight changes but nothing alarming so that was good.  My oncologist is concerned at how quickly I have begun having visual changes.  He has opted to have me discontinue the chemo for one week, until I have had my appointment with the eye doctor.  He wants to ensure there is nothing more serious causing my visual changes.  If the appointment with the eye doctor is good then back on the chemo and with lab work and scans to follow in another 4 weeks.

I am hopeful that I will go back on the chemo next week and that my lab work continues to look good.  If for some reason there is another reason for my visual changes then we will have to address that before continuting chemo.  In a way this is good as I really want a break from all the stomach cramping and nausea.  I am strong and I know that this is only a small side effect that is temporary.  I know that in the end I will be much better.  I am, as always, so incredibly thankful for all my family and friends who have been supportive throughout my journey.  I am also thankful for the days that I do feel good.  The days are fewer and fewer but in time it will get better.  I could feel more blessed and fortunate for having a good day last saturday.  I had a wonderful suprise 50th birthday fish fry party, the Springfield Kings Bantam hockey team won their game in the semi finals for the Missouri state title and the weather was warm and sunny.  I guess you can’t ask for anything more than that.  I was surrounded by family and friends and fortunately for me I did not get sick.

I pray that for any others who are reading this and either begining treatment or have recently started treatment.  I pray that you will have few if any side effects.  I pray that if you do have side effects that you keep your physician updated of changes immediately.  I pray that one day all of us will be able to say that we are NED, (no evidence of disease).  I pray that all those who are suffering from cancer will get the appropriate care so that we can all say we are survirors.

Appreciate every day, say “I Love You” more often, start your bucket list and begin enjoying life as it is to short.  Don’t miss out on all the fun times, the memories you should be creating and never never take tomorrow for granted.  Love with all your heart.

God Bless You and may we be blessed with another day.

 





New Beginning: getting ready to ride the waves of a new storm so that I can reach the warm sunny days ahead

24 01 2016

Tomorrow starts the beginning of ending my time with caner.  I will always carry the scars that will remind me of the time we spent together.  I will have a new found ability to appreciate and enjoy every moment that I am blessed to have with family and friends.

I find it so hard to understand the why’s, the how’s and the what could I have done to prevent the ugly and debilitating disease of cancer.  The truth is none of us who have had cancer or who will get cancer may never get the answer to these questions.  The one thing we can all take away from the experience is nothing short of a beautiful miracle that allows us to make the most of the time we have here on earth.  Too many people spend their days working, stressed out, overbooking their schedules or being just plain lazy.  We fail to make time to relax, to call, write or visit family and friends.  We take waking up each day for granted.  It is those actions that cause to many people to go through life too quickly with few cherished memories.  Those of us who have been blessed with cancer manage to make time for the things that are important such as appreciating every minute of every day.  We make a point to catch up with family and friends, check off all those wish list items, tell others we love them…… We make memories for us and for all those who spend time with us.  For the select few of us who can say wow I am a cancer survivor I pray will continute to cherish each day because each day is a gift weather we have cancer or not.  I can say I am happier for this life and for the sincere friendships of those who stayed true to me/us in times of need.

I have been blessed with so many wonderful people in my life and as I go through these next few months I will do my best to continue to keep in touch with everyone.  I will post blogs so others can keep up with me and many more who I have not met can hopefully find encouragement and strength from my words.

I recently got together with a friend that I had not seen in a while.  To my surprise not only did she just finish with a double mastectomy, chemo and radiation but her husband also just finished chemo, radiation and surgery for cancer.  It really is sad to see just how many people are affected by the many different types of cancer.   I plan to continue to keep in touch with my friend and her husband and many others.  I may only be able to talk on the phone, through a text or a blog but I will make a commitment to make some sort of contact with friends.  For those who are really close family and friends I will do my best to visit them or have them visit me.  I am also turning into the crazy and annoying picture person.  I either take pictures when I get the chance to get together with friends or I have them take pictures and send them to me.  I have begun putting together albums with these pictures.  I have also been having fun with my youngest son going through some of these picture albums and reminiscing with him.  You can not believe just how fun it is.  We laugh, we ponder and we cry sometimes but it is something that will keep the mind and spirit filled with joy.

On a totally different note I always like to be prepared, expecially for days that may not be so good.  I am going to put in a big plug for a local business and internet business.  I have always been one to make sure that my family has a good home cooked healthy meals each day.  I may be able to continue this throughout my treatments if I get sick.   If the day comes that I can’t do the cooking I still wanted my family to have good home cooked meals.  We have a a business where I live called “lets make dinner”.  This is a fun place where groups can go and make up good home cooked meals that they then put into freezer containers with labels that have the directions to heating/cooking the meals at a later time.  While this is fun to do with friends or even kids it is also a place where where the employees also make dinners along with the groups. The employees freeze their meals and customers who can’t come in and make up meals.  Anyone can just stop by and buy the pre-made meals. If you want to ensure they have the dinners you want you can also call or email them with this dinners and side dishes you want each month and they will make them up.  You can come in to the business and pick them up or they will even deliver them to your home.  Wow what a great idea.  So if I do get sick I plan on having a few pre-made dinners on hand so my family will still eat a good healthy home made dinners.  I also have done a lot of research on some of the online dinners you can order and then cook at home in your own kitchen.  My youngest son loves to cook which will make this a good option for us as well.  I have found through my research that the best rated online dinners are with “Blue Apron”.  Here you can buy healthy dinners with ingredients that are fresh for the season and they are grown locally.  You can choose from different menus each month with no obligations or commitments to join a club.  This is a little more expensive than “Let’s Make Dinner” but much more fun and healthy for those who like to cook or want to learn to cook.  Blue Apron allows you  pick the meal you want to but and the number of people you want to serve.  Blue Apron will then send you the step by step guide to cooking it.  The kit comes with the exact portions of each item needed to cook the dinner.  What fun.  The menus change monthly and before you know it you will have a chef in your own home making great meals.  My family is almost hoping I don’t feel well so they can experience cooking without the hassle of going grocery shopping.

The link to “lets make Dinner”:  http://www.letsmakedinner.biz

The link to “blue Apron”:   http://www.blueapron.com

Ok enough babble.  I start chemo tomorrow,  I have meals made and meals ordered, I have this blog to keep family and friends updated on my current experiences with chemo and a checklist of those I want to keep in contact with during this adventure.  When this is over I hope to be cancer free, in the habit of staying in contact with family and friends, enjoying every day and hopefully helping others who may be going through the same thing.

 

God Bless and may we all find happiness in our hearts.

 

 





Time..Yes The Time Has Come..!!!

5 01 2016

What is time?  It can be many different things to many different people. Time can be many different things to a single person depending on the day, the time of day, the mood, so on and so on.

The one thing that is certain is that time does not stand still.  Live life like there is no tomorrow.  So what does time have to do with me?

The time has come for me to begin treatment for malignant metastatic nodule melanoma.  I originally decided to create a blog so that I could share my story with others who may be experiencing the same fate or for others just looking for daily inspirations.  As you can see I have not posted much because there was not much to post.  I was diagnosed with nodular melanoma stage IIIb,  Breslow thickness 1.92 and Clark level 0f at least 4 in February 2012.  I had a wide leg excision on my outer right thigh and sentinel node removed.  The sentinel node came back positive but the wide leg excision had clean borders which showed that all the cancer had been removed.  I then underwent a total lymph node dissection of my right groin and a muscle flap from my right thigh.  Only one lymph node was positive for nodular melanoma.  The doctors felt that I had a very low chance of reoccurrence.  Good news, so I thought.  I would then be scheduled for checkups every three months with pet scans every 6 months.  Yep, as many of you know, I was the lucky one who did not fall into the category of NED (no evidence of disease).  The pet scan showed areas of lymph node involvement in both the right and left pelvic nodes.  I went back into surgery to have them removed and the pathology report showed no cancer.  Whew I was lucky.  I returned to my regular 3 month visits and all was looking good.  Just when we were ready to change my appointments to every 6 months I had another reoccurrence that appeared in my right buttox.  Wow another surgery and once again I was cancer free.  As expected I was back to 3 month followup appointments and 6 month pet scans.  This was good for a while then…..yep you guessed it I had another reoccurrence.  This time I had one area on my butt and one on my back.  Surgery was scheduled for two weeks from the time my biopsies came back positive.  I went in two weeks later for surgery and told my surgeon that in the two weeks that I was waiting for surgery I had a third area show up.  I had surgery and all 3 areas of cancer removed. According to the pathology report all three were malignant metastatic nodular melanoma.  Well once again it looks like we got it all except for a new area that showed up on my pet scan.  It looks like I may have cancer in my spleen. All I can say is that cancer has a mind of its own.  I should not have had any reoccurrence of cancer and yet here I am with possibly a new cancer spot on my spleen.  After long discussions with my physicians we decided that we can no longer continue to just cut the cancer out of my body.  We decided that it is time to start chemo treatments.  I am actually going to be taking two drugs, Tafinlar and Mekinist.  I will begin treatments on January 25th.  I will do my best to post how I feel and how things are going in hopes of helping others who may be going through the same thing.

I am truly blessed to have such amazing physicians, family and friends.  I know that I will beat my cancer.  I am strong, I have to many things to do in this life and I plan on doing them all before I check out.  I have a strong support group who sends prayers regularly and I know that all those prayers will keep me going.

 “The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at a time of challenge and cotroversy.”

-Dr. Martin Luther King





Starting a new year offering insight and thoughts to ponder, and a 2015 Pay it Forward Initiative challenge to all readers!

7 01 2015

Today is a new day, a day to cherish, a day to learn and a day to change. Change yourself and the world to make it a better place.  Please read all the way to the bottom for a new year challenge that I propose for each of you reading this blog.

I hope that sharing insight to my own health and the health of others I can inspire others to change the way they look at others people in the world.  In the world today we are all so busy with the daily hustle and bustle that we tend to make hasty judgements without taking the time to consider that there may more to a situation that is apparent to the naked eye.

Story 1:

There is a beautiful young woman who pulls her car into a handicap parking space and gets out of her care and walks into the pharmacy.  There is an attendant at the register who notices her.  The attendant quickly makes a judgement based on her appearance that she is taking up a handicap parking place for mere convenience. The attendant goes to the back and gets on the intercom and announces that the person parked in the handicap parking space must mover her car immediately as it is reserved for the handicap.  A few minutes later the manager of the pharmacy calls the attendant to the back.  The manager explains that the beautiful young lady parked in the handicap spot was just recently released from the hospital and is suffering from congestive heart failure.  The lady is at the pharmacy picking up her medication and is currently waiting to receive her permanent handicap license plates.

This is a true story

Do not judge based on appearances as you can not know the story if you do not know the person who is writing the story

Story 2:

This is about me.  I am healing from my most most recent surgeries.  I have lost some weight and since I have not been able to get my hair done since my surgeries it is now long and my natural curls have returned.  My look has changed and is improving some.  I am getting better each day and I feel much better than I before surgery.

I am someone who pushes myself harder than anyone should.  I don’t like to give up or say I can’t do something.  This is not always a good stance since I did not take the time to care for myself as soon as I should have.  As a result of this decision I let myself go until my body was ravaged with pain, loss of nerves to my arms, hands, legs and feet.  The surgeries have helped relieve the pressure on some of the nerves and is helping decrease the constant pain.  My doctors are thinking that the reason I developed the bone spurs because of my overactive immune system from my cancer.  As for the degenerative disease in my spine they do not know why.

I may be improving but there are many residual issues that are not improving yet.  I still do not have some of the fine motor skills in my hands.  I have trouble with pain and the ability to grip things like a drinking glass, writing with a pen, holding a phone, etc.  The biggest problem is due to my thumbs.  my fingers work good but my thumbs do not.  This makes many tasks difficult.  The pain in my feet has improved and the pain in my lower legs has improved but I still do not have any of the reflexes in my ankles or my knees.  I still have trouble walking for any distances over a block or so.  Walking longer causes pain, limping and occasionally I will trip and fall.  If I take breaks I can make it a little longer distance but there are issues with that as well.  My back is still very painful from the last surgery making certain movements extremely painful.  I can not sit more than 15 minutes or I get sharp burning pain in my back and butt and I get very stiff.  The best way to sit is in a very hard chair that allows me to sit up with perfect posture.  Soft chairs are completely out of the question.  Sleeping is impossible.  I can not lay flat in any position without severe pain.  I lay down to rest and I then get up every 15-30 minutes in excruciating pain.  The best part of my day is getting up and doing small tasks around the house with frequent breaks.  I am always tired due to lack of rest, and I can not stay in any one position for any length of time.  This makes it possible for me to do most things but only with  extreme moderation.  With all of that said I have now had 15 surgeries.  I still suffer from lymphadema in my right leg, I have permanent nerve damage in my right thigh and groin from my muscle flap. I have also developed arthritis in my back and joints from all the surgeries making it painful and hard to do things depending on the day.

So, in a nutshell I may look good, I may get out of the house and run some errands or watch my son play a sporting game or even go out on a date to dinner but I can only do things in moderation and I never do anything without having pain.

Once again do not let appearances cloud your judgment this year.

On a much brighter note lets spend 2015 looking at things with a new perspective, help others if we have the ability to do so, and spend the next 12 months focusing on what we can do for ourself and for each other.  The world needs more love and less hate.

This year I have joined a group of wonderful people in the “PAY IT FORWARD INITIATIVE” on Facebook and I would like to share this with everyone reading this post.  Please feel free to copy and do the same.  This post is for Facebook and I have already done this and I hope you will take the time to do this as well.  Below are the instructions for how to do this.

Here it is. The first part of the post you can share on your Facebook:

After all the recent terrible tragedies that have happened are are happening, this world needs as much kindness as it can get.  I’m participating in this Pay if Forward initiative: the first five people who comment on this status  with “I’m in” will receive a surprise from me at some point during the next 12 months – anything from a book, a ticket, something home – grown, homemade, a postcard, absolutely any surprise!  There will be no warning and it will happen when the mood comes over me and I find something that I believe would suit you happy.  These five people must make the same offer on their Facebook status.  Once my first five have commented “I’m in” I will  forward this message to put on your status.  Don’t share it until I send you the instructions so we can form a web of connections of kindness.  Let’s do more nice and loving things, without any reason other than to make each other smile and show that we think of each other.  Here is to more enjoyable and friendly, and love filled year.

Once you get your five “I’m in send the following:

Congrats, I’m so happy you are one of my 5.  Please send my your address.  Please follow the instructions on the post below and copy, and repost on your news feed.

After all the recent terrible tragedies that have happened are are happening, this world needs as much kindness as it can get. I’m participating in this Pay if Forward initiative: the first five people who comment on this status with “I’m in” will receive a surprise from me at some point during the next 12 months – anything from a book, a ticket, something home – grown, homemade, a postcard, absolutely any surprise! There will be no warning and it will happen when the mood comes over me and I find something that I believe would suit you happy. These five people must make the same offer on their Facebook status. Once my first five have commented “I’m in” I will forward this message to put on your status. Don’t share it until I send you the instructions so we can form a web of connections of kindness. Let’s do more nice and loving things, without any reason other than to make each other smile and show that we think of each other. Here is to more enjoyable and friendly, and love filled year.

Thank you for taking the time to read this and Thank you in advance for those who choose to participate in the PAY IT FORWARD INITIATIVE.

GOD BLESS YOU AND MAY 2015 BE A YEAR OF PEACE AND HAPPINESS TO ALL





Latest News on cancer and spinal issues 12-7-14

7 12 2014

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








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