Bucket List

 

Advertisements

Treatment

abc_nwo_medminute_100902_wg

Well it has been over a week on treatment and I am doing fairly well with the meds. I have started to loose the swelling all over my body and my stomach is on the mend from the inside. Friday-Sunday are my weakest days all because of one antibiotic I take only on the weekends (Flagyl). 


I started a new round of Flagyl today so we will see if this round goes like the last one or intensifies symptoms. It has been difficult to write on my blog as my brain is just not up to par for putting my thoughts to words.

My spirit is still hopeful and I know I have a long way to go but I am optimistic that it will all be for the better in the end!

I came across this today on Yolanda Foster from the Real Housewives of Beverly Hills. She also has chronic lyme’s disease.

http://radaronline.com/exclusives/2013/11/yolanda-foster-real-housewives-beverly-hills-blog-lyme-disease-struggles-shell-woman-used-to-be/
http://radaronline.com/exclusives/2013/04/yolanda-foster-lyme-disease-video/
http://radaronline.com/exclusives/2013/01/yolanda-foster-lyme-disease-real-housewives-of-beverly-hills-video/

http://mandaswords.weebly.com/1/post/2013/11/treatment.html

 

 

A New Dawn…A New Day

Picture

My journey to answers started years ago, but until recently it brought on a whole new meaning. I have listened to so much negativity throughout the years about my health and my sanity and it has taken its toll on me. The decision to pay for specialized testing through Igenex labs was a tough decision for me. All my fears surfaced on whether or not it was all in my head or the real thing. Years of people planting the seeds of doubt got to me. I knew deep down though I was not crazy; that what was happening to me was real, all of it was real. 


So now I take you through the last few days that has forever changed my life.

Picture

Wednesday morning my friend Jenna and I set out to see the LLMD doctor that I have been waiting months to see and and a long lost friend. We talked for hours about all that had been happening to me and how people have treated me along the way. I was filled with anxiety. I had so many emotions running through my body it is almost indescribable.  I was scared of what was coming and the anxiety just built up till we arrived. I had my moments of doubt on whether or not this was going to give me the answers that I was searching for and Jenna tried her best to ease my mind but I think she was just as anxious as I was.

Picture

We finally made into town and arrived at the hotel. My long lost friend Kim came out to meet us. I also met Kim’s friend Vee for the first time. Kim has been in my life for a long time but we lost touch after high school when life took us in different directions. Just a few months ago we found each other again on Facebook. This would turn out to be a pivotal change in both of our lives. She was diagnosed with Chronic Lyme’s Disease and had posted a video about it. We had talked forever about what I was going through and she suggested I watch. I watched the documentary with tears in my eyes the entire time. This was a story of me. Kim and I were convinced that I to had Chronic Lyme’s Disease. Kim helped me through the next couple of months of preparing to see the LLMD doctor that she was seeing and to get the proper testing to diagnose it. I followed her steps and it led me to this day.

Picture

We all piled in the car Jenna, Kim, Vee and myself and off we went. After arriving at the doctor emotions were running high. We talked about the good ole days and tried to stay distracted until they called my name…it was time.  Jenna and Kim accompanied me to see the doctor. We sat anxiously awaiting my test results. The doctor was reading my results and paused to utter the words “Jesus”, he told us that it was the most positive test result he has ever seen. Kim was crying and I was in shock. Kim had to keep repeating it to me, telling me that not only was I positive by Igenex criteria but also by the strict guidelines of the CDC. When it finally hit me I just broke down and Kim and Jenna rushed to my side to hold me. It was a beautiful life changing moment. He expressed that I was very ill and he was going to help me get better and that I have had it since I was a child. Funny that two girls from a small town in Texas end up with the same disease. 

Picture

My mind was racing with so many emotions that I was mentally exhausted. I could not believe that after all these years I finally had an answer to everything. I have been through so much pain and agony my whole life but it has made me strong and very tolerant to pain. I have listened to all kinds of doctors over the years tell me that I was crazy or making it all up, I even heard this from the people closest to me. I can’t even begin to tell you how soul crushing that is. To have a doctor not believe you is one thing, but to have your family not believe you is another thing all together. I finally made the choice to just be my own self advocate on my health. When I connected with Kim she brought me hope and peace of mind that no matter what she believed me and was willing to help me. It takes a beautiful soul to give someone help when they in return are in just as much pain.  All of this made me realize that I needed to move on from all the negativity in my life and start anew.  

Picture

The girls and I headed out for some grub at a little Mexican restaurant. We sat in a booth for four and talked. Vee had struck up a conversation with an older man sitting across the way from us. He dressed in faded overalls, moss green crocs and a crooked camo cap. He was alone and unmarried, quietly eating his dinner. He obviously was a regular because even the manager knew his name. This man that I will call “R” spoke to us about respect for women and how always to be kind to them. He made my heart smile, surprisingly gentle and kind even with the rough exterior. When we were ready for the check the waitress came and told us that our meal had been “taken care of”. We were shocked and asked by who. Even though the waitress never really said we knew who it was. The kind man “R” had picked up the tab for us. We were very grateful for his generosity and spent some time chatting with him. What a kindness “R” had showed us and we promised to pay it forward.

Picture

We headed back to the hotel to reflect on the day and unwind. I couldn’t have asked for a better group of girls to help me through one of the hardest and joyous days of my life. We laughed, we cried and we goofed off big time! From dog piles to rapping in the parking lot we had an awesome night letting loose. Vee had us cracking up with her toilet paper mask that Jenna made her and her talent for rapping. Jenna graced us with her best dance moves and Kim with her beats. These ladies are infected with kindness and laughter.

Picture

The next morning was a somber one. It was time to head home. We decided to get some breakfast at Cracker Barrel and part ways. We talked over breakfast and then hit the gift store. Everyone knows you can’t go to Cracker Barrel without visiting the store! With our last hugs goodbye we parted till next time.  Jenna and I spent the rest of the trip home listening to music from Griffin House and enjoying the beauty of the drive.

Picture

In these short few days my life has changed dramatically. I not only found the root cause of all the things that I have experienced throughout my life but made some life altering decisions for myself. I learned in this brief period of time that life is to short and I do not want to be surrounded by people that do not make me happy and people who do not have my back. The betrayal I have felt has not left me bitter but more aware of people’s true colors. I have learned the hard way and now I can move on with my life in a more positive way. Knowing what I will have to go through brings me comfort that I have great friends by my side. 

Picture

Letter to Kim:

Kim,

You have been such an inspiration to me. You reached out to me in my most desperate of hours. You helped me find the strength to march on in my journey for answers. Your kind and motivating words touched my heart and soul. You encouraged me with your own story of struggles to take the leap faith. I know that I have reconnected with a life long friend. Words can not due justice to the way you have changed me. I will be forever grateful for your support and honest words. I will always be here for you for anything that may come your way. I believe in you and God will bless you for you have paid it forward in one of the biggest ways possible. You are my friend and always will be.

Love

Amanda


111-IMG_9748 003-IMG_9631 004-IMG_9632 015-IMG_9643 018-IMG_9646 022-IMG_9650 031-IMG_9659 033-IMG_9661 054-IMG_9682 056-IMG_9684 057-IMG_9685 059-IMG_9687 066-IMG_9694 067-IMG_9695 070-IMG_9703 072-IMG_9706 073-IMG_9707 074-IMG_9708 075-IMG_9709 076-IMG_9710 077-IMG_9711 078-IMG_9712 079-IMG_9713 082-IMG_9716 089-IMG_9723 090-IMG_9724 092-IMG_9726 093-IMG_9727 094-IMG_9728 095-IMG_9729 099-IMG_9733 109-IMG_9746 110-IMG_9747

Answers & Actions

Picture

The time has come for answers and actions in my life. So many things have been crashing down around me that I feel as though I am drowning. 

I started on this journey seeking the answers to my health and my future. I have worked hard to get to where I am now and there is no turning back. I always knew this would not be easy to overcome but I have to try. All the changes that have been happening to me over the last year has halted my happiness. I have not been able to do all the things I love due to the way I have felt. It has all been slowly taken away. I still have fairly good days where I can go out and enjoy the sunshine with the kiddos or a good day of fishing but its not without pain, just tolerable. It means I wake up every morning and my pain level is either tolerable or not tolerable, end of story. It is what is and right now I can not change what is happening to me, but I am trying to.

In the midst of all of this some things have happened that I wish I did not have to endure. I wish I didn’t see what I did. I wish that I did not have to face the truth that I am faced with now. It is right in my face taunting me to do something about it for so long but now it has all been exposed and there is no turning back now. 


What I saw was people turning their backs on me, telling me I am faking, over exaggerating my illness because I am lazy or I wanted the attention. It is utterly mind blowing to me how these people claim to know me but really know nothing about me. It has been the hardest thing out of all of this to deal with. I have seen their true colors and it has crushed me. The people in my life that are supposed to be there for me no matter what and to have my back, hold my hand and help me through all this, just shut me out. I have never been more devastated by such heartless and cold acts. 


I have always been there for these people and would gladly take a bullet for any one of them. It is obvious to me now that these feelings are not mutual. Some are not as cruel but just as skeptical in saying they need “proof” that I am ill. I am sorry that I do not look the part that makes it easier for you to accept that I am sick. Having an invisible illness that only rears its ugly head to the outside of me on occasion is very frustrating when I have to deal with ignorant and non-supportive people in my life. I never thought that I would have to “prove” anything to anyone that is close to me and that knows me, but I was greatly mistaken. 

Due to this overwhelming experience and other personal issues, I have decided to make some big changes in my life. I am getting rid of all the negative and all the drama. I no longer need to be surrounded by people who do not love or care for me the way that I do them. I no longer want to spend my days walking on egg shells around these people and pretending to be ok with the way they are treating me. I am not a doormat, do not take me for granted and do not mistake my kindness for weakness!  I have learned a harsh lesson about love, trust and respect and it is one I learned the hard way. 

So it is time for action! Out with the old and in with the new, onward I march! A new me is emerging from all this pain, a stronger, smarter me. I have grieved, been angry and now I am determined to change my life around. 

So, tomorrow I embark on my journey to see the LLMD and meet up with a long lost friend. She has been helping me every step of the way and I can not thank her enough. She is a rock battling her own battles but still finds the time to help me get through it to. God has blessed me by putting us back in touch with her. Together, her and I will move mountains! I am so excited and terrified all at the same time for so many reasons. This is going to be a long tough journey for me but the outcome will make it all worthwhile and y’all will have a front roll seat!

See y’all on the other side!

PS: I do want to thank all my precious friends that have been there for me every step of the way and who have helped me through every rough day I have encountered. They are all God sent and I love them all. Y’all know who you are! 😉


 

“Friends”

Picture

Sorry it has been a minute since I posted but I had such a great last week that I didn’t have time to stop. After coming out of my flare up I have been feeling pretty good this last week. Still aching and pain but not enough to keep me in bed. We have been having beautiful fall weather, so you can’t resist wanting to be outside.

My friend had her beautiful baby girl this last week and she is so precious! Makes me wish I could have another baby but so glad I can’t in reality. Baby Boop and Mommy are in great health and everyone is at home doing well. 
While my husband and I were at the hospital, another old friend and neighbor dropped by. Haven’t seen her in a long while due to her soon to be ex. After leaving the hospital we went by to see her new house being built and made plans for later in the week.  She came and stayed the night at our house last week and I can’t begin to tell you how much fun we had.

It was great to catch up on everything that was going on in our lives, talk about our kids and make future plans. The best thing of all was her and I being the last up having some wine and giggling like school girls. It brought back so many memories of long nights on her back patio getting into deep spiritual conversations to all out laugh fests. Well this night was both and we went from crying to laughing so hard we were snorting like piggies! It felt so good to laugh like that again. I had forgotten what it was like to just forget everything and just have some fun. Being consumed with all the pain and fear that I have come into, it was a huge comfort to have her there. 

Well the fun did not stop there because the next afternoon we headed out for a little fishing trip. One of the best fishing trips I have had to date. We laughed so hard it was almost impossible to fish. It was all worth it because we tore them up that evening catching 37 white & speckled trout. We got to bring the best of both worlds together that night, great fishing and lots of laughter!

She invited us the next day to stay with her and her boyfriend at his camp. All four of us were fishing off the dock having some good laughs and planning our fishing extravaganza the next morning. The next morning at 5:30 AM we headed out in the 42 degree weather. We had a great time fishing and cutting up. We spent all day goofing off and fishing in different areas. Even though we did not catch a ton of fish it was great bonding time. That evening Mr. “P” cooked up all the fish we caught and we had a delicious dinner off the water. My hubby was not feeling well, due to the mass quantities of alcohol he consumed so we could not stay the night. We headed home and I put him to bed. That was the end of our great extended weekend.

Today I am patiently waiting for my lab results that I took. I am ready for some answers and growing impatient. I only have a little while longer before the big day in Pineville comes. This weekend reminded me that life is short and no one should have to spend it alone, unhappy, in pain or suffering. I am ready for the next step in wellness. Not just a physical one but a mental one as well. 

Bring on the new!!

“Master Pianist”

1361607184_grand_piano_by_wolfgirl17591

 

So, I just had to write about my allusive neighbor today. I ran into her this morning as she was getting ready for her walk. Everybody on the block thinks this woman is “crazy” but I am starting to realize that she is not crazy but extremely intelligent and kind of a home body. She is a master musician and professor, or I should say used to be on the latter. She was recently in an accident when a teenager hit her and she damaged her shoulder and back and has not been able to play until this last week.

As we were talking she started speaking of her childhood and she almost came to tears talking about her father. I realized that her mother was a jealous woman and would not let her father that was also a very talented musician play their family piano. The mother who was not very good, insisted she be the only one to play it. Even though she only grew up listening to her mother play and not well from her account she still grew up to become a very sought after musician. She explained that until she was in her twenties she did not even know her father could play the piano and better yet as advanced as he did.  I guess some things are in the genes!

Anyway, as we were talking about my own passion for music and how I loved to play she offered one of the greatest gifts to my children. She offered to teach my kids to play all the instruments that she had if they were willing to learn. I was ecstatic! She prides herself greatly in her knowledge of music and her ability to teach it. She wants to start my middle child out first because she has shown the most interest in learning the piano. So Bug will be getting lessons from a master musician right next door! I am super stoked! To top all of this off…she is going to do it for FREE!!! Can’t ask for anything more than that!

I have always had a fascination for the piano. I have always wanted to learn to play myself. The beautiful music that can be made by the piano is hard to come by. It is so moving and breathtaking all at the same time. I have always wanted to have a piano in the house so the kids and myself could learn to play, but we all know how much pianos cost…was not going to happen. So I am grateful that my neighbor has one so the kids may learn to play.

I guess the morale of this little story is that we should not be so quick to judge a grumpy old woman next door. You never know what secret hidden talents they posses and are willing to share with others when treated with kind words and a gentle smile!

Some of my favs:
Debussy
Beethoven
Mozart

7-okt-12-Krystian-Zimerman-01-12-C-(nc, DG Akira Kinoshita)-611x397_2 3412133834_4c7121d512_z a-grand-piano-rich-franco Girls_at_Piano_by_padraig13 grand_piano piano assombrado piano_hands_by_K_style_Art two-girls-at-piano

 

One Step Closer…

Picture

Today I am one step closer to getting the answers that I have been desperately awaiting. This morning I set out with major brain fog, shakes and vertigo to the clinic. When I arrived I explained the complicated requests. 

Basically, I needed a random doctor or PA to sign my test requisition form so Igenex could run the lab work, but I also needed this clinic to draw the blood for them since Igenex is all the way in Palo Alto, CA. 

While I am waiting the nurse and I were talking and come to find out she has Lupus. She has had it for over 20 years! She gave me alot of great advice and a whole lot of do’s and don’ts. She must have told me a hundred times to go get my eyes checked because the Lupus medication and Lupus itself causes glaucoma (not what I wanted hear). Just one more thing to worry about since my peripheral vision has been messed up for months! She is a great woman and I have made a new friend!
 
While I was waiting on the doc I started reading her medical book and looked up Lyme Disease and Lupus. Pictures are in the gallery below.

When the doctor was ready, I had to explain everything to her. Why I was wanting the Lyme’s testing, why didn’t my doctor sign off, why did she have to sign this, blah…blah…blah. Finally, when she was comfortable signing and satisfied with my answers she proceeded for the blood draw. 


As I was getting my blood drawn, something peculiar was happening. I could not feel my entire arm, from shoulder down to my fingers. It was crazy! I kept telling the nurse as she was going exploring in my arm, but I think she secretly thought I was crazy. It took over thirty minutes for me to regain feeling in my left arm. I am not sure what caused it or why it happened, it just did.

So now that all that is done and I am safely back at home with the use of my left arm, I get to start a new game. A game of waiting for these infamous test results. I was told about a week to get them in…ugh! I am excited, scared, impatient and hopeful all at the same time. But I keep repeating to myself…I am one step closer!IMG_9210 IMG_9211 IMG_9212 IMG_9186 IMG_9203 IMG_9204 IMG_9205 IMG_9206 IMG_9207 IMG_9208