“Friends”

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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!!

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“Master Pianist”

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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

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One Step Closer…

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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

 

Lyme Disease

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I came across the highlights from a recent Lyme Awareness protest in San Francisco, Ca on October 5, 2013. From what I read it was an interesting day with some unexpected twists of fate.The park ranger (Jordan Fisher Smith) from the movie “Under Our Skin” was there to speak about his journey, along with many others. I was also very impressed with Zach Reed (aka Revolt) for his inspiring rap.

Link to full article on Lymedisease.org from the San Francisco Protest:

http://lymedisease.org/news/touchedbylyme/recap-san-francisco-idsa-protest.html?utm_source=ILADS.+Horowitz+book%2C+SD+Lymewalk&utm_campaign=Horowitz+SD+rally&utm_medium=email


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All of these people and their experiences should be heard to spread awareness to everyone. This is no laughing matter and this disease infects 300,000 plus people a year! Yes, you read that correctly. That is only the documented cases, this does not account for the undiagnosed patients. Protests like this one should be happening in cities all over to get the right people’s attention and get the guidelines changed. As of right now, Chronic Lyme’s Disease is not covered by insurance and the aggressive treatment is not adapted by all physicians as the rightful protocol. It is very controversial to say the least. Katie Couric even did a show about CLD this month. Progress is being made but more needs to be done to get the word out.

Photos accompanying this blog are by Stephanie Vandagriff of Kai West Photography and Tony Hayman. (From San Francisco Lyme Protest)

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I wanted to share some information on how CDL is treated by an LLMD (Lyme Literate Medical Doctor). I have this information because at this time I am being tested for CDL. I am 99% positive that I have CDL and have had it for quite some time. A great childhood friend also has CDL and after hearing everything that was going on with me suggested I watch “Under Our Skin”. It is an excellent documentary on CDL. I cried through the entire movie. It was such a relief to hear other people were going through what I was and best of all IT HAD A NAME, Chronic Lyme’s Disease! My friend started helping me get the necessary things in order to test for CDL and go through the symptom checklists. I was also blessed to get setup with an LLMD that is only about three hours away from where I live. In a few short weeks I will go for my first appointment with my good friend and together we will get the news. I will be blogging all about this journey as things come to pass and confirmations are made.In the meantime, I will continue to spread awareness and help my friend through her journey with CDL. Below are links to the checklist and documentation on treatment.


This link is to Diagnostic Hints & Treatment Guidelines for Lyme & Other Tick Borne Illnesses:
http://www.borelioza.org/materialy_lyme/burrascano_10.2008.pdf
Here is the link to the Master Symptom List for CFS, FMS, CMP & Lyme Disease:
http://www.anapsid.org/cnd/diagnosis/mastersymptoms.html

Please check out the documentary if you or anyone you know maybe experiencing unexplained symptoms that doctors are unable to diagnose. You may just save their lives!

My Story With HG – Hyperemesis Gravidarum

So this story is a hard one to write and an experience I wish on no woman. I was told at 16 I would not have children at all and that devastated me. I had always wanted a big family and that seemed to shoot all my plans down.  I did however get pregnant and go onto have a baby girl, she was my miracle. I soon thought that because I had her I should not have issues having another baby, I was sorely mistaken.

After having my first daughter I had 14 miscarriages that my doctor and I were aware of. Many of them requiring a D&C. It was a horrible experience and it crushed me. I lost two babies at 6.5 months and that was just about the death of me. As if loosing that many babies wasn’t hard enough emotionally and physically, what I was about to experience was even more traumatic.

I got pregnant again in late 2004 and was bound and determined to find the cause of my miscarriages and to save the baby I was pregnant with. I did a lot of research and found a maternal fetal specialist in Fort Worth, TX to take over my care and thank God I found him. He quickly ran some genetic tests and found I had a genetic blood clotting disorder that was causing my miscarriages. Basically I was forming a blood clot and passing it to the baby. He treated me with Heparin injections for the first six months of pregnancy then switched me to blood thinners. During the pregnancy I developed fibroid tumors but everything worked out in the end and I had a perfectly healthy baby girl. After her birth I thought that I was done having children with all the issues I had throughout, but God blessed me again shortly after when I got pregnant again in 2006.

I found out I was pregnant by accident. I was feeling horrible at work for over a week and getting weaker by the day. Finally one day at work I passed out and off to the hospital I went. There is where I found out I was pregnant again but I was not well at all. I had lost 12 lbs in less than two weeks. I was constantly throwing up, I couldn’t eat or drink anything without getting sick numerous times a day. Blood tests and ultrasound revealed I was only 3 weeks along. My doctor informed me I was gravely ill and that I had HG, Hyperemesis Gravidarum. He told me in most cases it would be over in a few weeks and I would go on like normal but in the meantime I needed to be put on TPN (total prenatal nutrition) and a anti-nausea pump to help me along. So a PICC line went into my heart to feed me 24/7 and a small pump put into my leg to deliver me non-stop anti-nausea medication. I was sent home after a week and I was to be set up with a nurse at home.

I was beyond miserable, words can not describe the torture that I endured during this time. I could not put even water in my mouth without getting sick. It was constant relentless agony. I spent my days on the floor by the toilet, in the bed or on the couch even though I had two other children to look after. There seemed to be no end in sight. My days filled with dark thoughts and endless crying for relief. When the “expected” time frame had passed and I was still very ill my treatment had to continue, 24/7 delivery of TPN and Zofran. I again was told even though I had passed the mark my symptoms should go away soon but they didn’t. They stayed with me to the end.

During the following months I was plagued with kidney infections and getting sick with just regular colds that would not go away. It was hard to be optimistic and to be happy about this pregnancy. I felt so disconnected from reality and from everyone around me. I found out I was having a boy and what should have been the happiest time just wasn’t. I had always wanted a boy and so did my husband. I thought the news would lift my spirits and help me fight through this but I was so depressed it just didn’t matter.  I would have excruciating constipation and migraines that would leave me exhausted and weak for days on end. I had numerous trips to the hospital for various things but the there was one that was almost my demise.

During Christmas time I had begun to get weaker even with the treatment and kidney infection was not letting up and I was sick with an upper respiratory infection. One night my nurse could not ignore that I was becoming more incapacitated. She called the doctor when my fever had risen to 104. They called for an ambulance and I was rushed to the hospital. After arriving my temp was taken again and it had reached an alarming 107. The quickly buried me in ice. I was delusional and hallucinating. Things were coming to me in waves. I know now I had a severe kidney infection and my kidneys were shutting down. Talk of dialysis was becoming a reality. I also had full-blown pneumonia. To say the least I was in bad shape and beaten down. I feared for my baby and myself, I did not think either of us were going to make it through. Three days of being packed in ice and my fever started to waver but the damage was done and I was not getting better. They had tried all the antibiotics that they could while I was pregnant to no avail. My fever loomed around 103 and stayed. My outlook was grim and the doctor was running out of options and time.

It was the night before Christmas Eve and the diagnosis was not good. He told me he did not expect me to make it through the night as my entire body was shutting down that even if they terminated the pregnancy I would most likely not survive either, but I told him that was not an option I had come to far and if I was going to die I wanted to do it at home around my family not in that hospital. He put up a huge fight and kept saying no, but I was not having it. I signed an AMA and they released me. As I was getting ready to be wheeled out he came back and said he could not let me go with nothing, not to just go home without one last-ditch effort. So, he asked if I would be willing to take an antibiotic that could possibly have devastating results but may save “my life” not the baby, I was confused and upset. He had to explain to me that this was it, he did not expect the baby to make it but he wanted to try and save me. After a long-winded debate I agreed to take deadly doses of vancomycin to try and save my life.

At home everyone gathered and my nurse prepared my treatment, it was going to be a long night indeed. I had 8 of the these balls to be infused with, which were to be given every two hours back to back. The thoughts running through my head were paralyzing. I now know what it is like to be on my death-bed and the feelings that overwhelm you and consume you. It was a very dark night and I did not see the light at the end of the tunnel. I laid on the couch and took each of my treatments, I could feel my body being overrun with poison. That is what it felt like, pure poison that was going to kill my baby boy and me. I remember I did not want to sleep I was so afraid I was not going to wake up and that it would all be over. I have never prayed as hard as I did that night, I begged for mercy. I was not ready to go.

I could see the tears of everyone, I could feel my own, it was coming. I remember the rush of warmth that washed over me and the need to close my heavy eyes and I did. The fear washed away from me and I thought this is it, it’s over. I was dying inside, I did not want to go but accepted my defeat and fell asleep.

Much to my shock I woke up hours later and all the treatment was done. I was shouting in my head ” I made it! I am alive! The baby is alive!”. I prayed so hard in those first few minutes of being awake, thanking God profusely for saving me and my boy. It was a miracle, plain and simple and I will never forget it. Everyone was shocked but happy.

I stayed sick and constantly sick but I made it through all of it. I went on to deliver him with minimal complications. Our baby boy had arrived and the thought was that everything was instantly supposed to be over as soon as I delivered….WRONG! They had taken my PICC line out right before I delivered so I was not being fed anymore but I still could not eat afterwards. I was still sick for days afterwards and still having to take zofran. It finally all subsided and I was sent home with our new bundle of joy.

It was short-lived because a new battle awaited me yet again.  I was taken to the hospital three times by ambulance during the first three weeks at home. Only for them to send me home telling me I was having panic attacks. I knew something else was going on but I just didn’t know what it was. My chest felt like an elephant was sitting on it and my neck and right arm were cramped and aching. My heart felt like it was going to explode. Finally, on the fourth run by ambulance to the er I got a doctor that asked me if my right arm was hurting me and I said yes, why? He immediately called for the nurse and said we were going to surgery right away. He knew it was my gallbladder, it was rupturing. It was rupturing as he was taking it out of me, he said I was so lucky I got him that day. I also had an upper and lower gi done at the time and they had to repair six holes in my esophagus and stomach from not eating or drinking during the pregnancy. After all that I was sent home again and everything was good for a few months minus the HUGE adjustment to not having a gallbladder and the after effects of not eating or drinking for 9 months.

I got another large cyst on my only remaining ovary and it was big, I knew what that meant…another surgery to drain it. So again back to the hospital to have it drained by laprascopy.  It wasn’t even two months later I got another one and it was even bigger and it was ready to rupture. So this time going in I was under the advisement that I needed an emergency total hysterectomy. I did not want this as I had not even had time to digest the thought, but I felt pressured into this decision and went with it. So I was given a total hysterectomy and left with nothing. My body went through major shock and it took me a long time to adjust.

I also had to have a bladder sling put in because the tendon to my urethra had been severed during childbirth. TRUST ME when I say this was no bueno!! When this failed it had to be redone…again no fun! Wearing a catheter and not being able to “go” was extremely scary.

Besides all the surgeries for various things my teeth had also started to fall apart literally. I would bite into something and they would crumble. I was in so much pain it was pure hell on earth. I eventually had to have all my teeth pulled on the top and almost all on the bottom except four. It was excruciating pain.

All of the things that I had to endure during and after that pregnancy was almost more than I could handle. Not just for me but for my family as well. The constant carrying for me had taken its toll on them as well. Depression was high during this time and my outlook was not great. The only thing that brought me any joy was my children. Knowing how much I loved them pushed me through those dark days. I know I did not go into a lot more detail about my feelings and experience with this but it is really a place I do not wish to go back to ever, the emotions associated with that time are to much to bare. I hope that everyone who reads this gets a better understanding of what this was like and if anyone woman they know that has this needs all the love and support she can get from you!

Here is a great link to the HG Community:

http://www.helpher.org/

Picture showing how the setup is for TPN

Picture showing how the setup is for TPN

PICC line

PICC line

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TPN

TPN

Zofran Injections for Pump

Zofran Injections for Pump

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Anti-nausea pump

Anti-nausea pump

Whole kit for anti-nausea pump with Zofran

Whole kit for anti-nausea pump with Zofran

Pump for PICC line

Pump for PICC line

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This is what a Vanco Ball looks like.

This is what a Vanco Ball looks like.

My Story on Endometriosis

I was diagnosed with endo when I was 16. I was told then I would never have children and I believed the doctors at the time. It was a hard pill to swallow as I wanted a family so bad. Thank goodness I was young and could focus on other things and not let that consume me.

I have had endless laparoscopic procedures to try and get rid of the endo but somehow it always came back or the doctor was never able to get it all and I still have it to this day even after a total/radical hysterectomy.

Besides the surgery I was given Lupron and other drugs to try and keep it at bay but I had serious side effects to the Lupron. After only two shots of it I developed severe hip and joint pain and was not able to walk. I had to discontinue treatment.

Endo is like a spider web of tissue that spreads throughout your abdomen and can attach itself to anything. That includes other vital organs and what not. It can get into your bowels and lungs. It is extremely painful because once it attaches and then attaches to something else it pulls. So when you move it resists and the pain can be excruciating.  I can not tell you how many times I hit the floor crying in agony because of this or when I went to move and all of a sudden a sharp pain came over me that would make me double over. As I got older and became sexual active the pain was in even greater than I knew from the beginning. It was so painful to have intercourse sometimes I would cry myself to sleep afterwards and the pain would last days afterwards.

My worst experience with the endo to date is when I went into the emergency room (by myself) with my little girl in tow for a ovarian cyst that was protruding from my abdomen. I knew this pain all to well but I knew this one was abnormally large (like the size of melon).  I was in so much pain I was delirious. I waited and waited for the on call ob/gyn to see me but was being told he was in back to back surgeries all day and he was still not out. I went in around 9pm that evening and with no pain meds I waited for the doctor. Finally around 2am a whole team of people rushed in and the doctor said we were going to surgery right away to do a laparoscopic procedure and I said “ok, I have had many no need to explain let’s do this”. When I woke later that afternoon I noticed I was put on a morphine drip. I had never been put on a drip after a lap before, so I thought this was very unusual, but thought they felt bad for leaving me with no pain meds before. Soon I needed to use the restroom and called for the nurse to help me. When I went to lift up, I knew right away something was terribly wrong. I lifted my blanket only to see that I had staples across my abdomen like I had just had a c-section, I was mortified!! The nurse kept trying to tell me that this was the surgery he told me he was going to perform, I politely told her I don’t think so and wanted to see him right away. To say the least the doctor refused to see me and I had to take an AMA to get out.

I was heavily dosed with demerol and morphine when I was discharged (I guess he was REALLY feeling bad). My husband and I drove to Texas for Christmas with our daughter a week later. The day after Christmas I noticed that I was looking like I was 9 mths pregnant and ready to pop. My Mom was telling me this can’t be normal and I should call my doctor. Well I called the doctor I had been waiting to get an appointment with for months. Mind you I had not actually seen this doctor yet but he took my call. He told me to come to the ER immediately and I said nope, I am coming to you was not letting another doctor touch me if it wasn’t him. He was flattered but was worried, so worried he called the hospital before hand and setup and OR and pre-admitted me. Again, let me remind you I had not met this doctor at all, not one appointment. So, my husband drove me 8 hours back to New Orleans. We got there around 10pm and he was there waiting on us. Met me for the first time and got me into a room and examined me. He took one look and rushed me to surgery. I remember telling him the whole time “PLEASE PLEASE PLEASE don’t take my ovaries, I want to have more children”, I was terrified that I was about to have an emergency hysterectomy.

When I finally woke everything was dark, there was a faint light at the foot of my bed were three surgeons stood. They were still in their scrubs and gowns and I remember the look on their faces…my heart sank. Dr. Champ came to my bedside and held my hand and prayed. I could not tell you the emotions running through my head at that time, it was so overwhelming. He then told me that he had to take one of my ovaries, that it was shattered, but the other he made sure was working. He told me that the surgery took 12 hours and two other surgeons to help him finish. I was in awe, I did not know what to think about that. He proceeded to tell me that my body was so riddled with endo that he could not even get it all. It had spread everywhere and was wrapped around my kidneys. He said that they left it in fear with my kidney history that they would have done more damage. He also told me that I had a large hematoma at the incision site. He said it was the size of a softball. He was in amazement along with the other two doctors how that thing had not ruptured and killed me. All three doctors were in agreement that it was a miracle I was still alive and that the idiot doctor who performed the last surgery on me did NOTHING!! He opened me and and saw the extent of my ailments and closed me back up!! They wanted his name everything so they could turn him in.  After this experience I found out that the doctor had been using cocaine and had performed over 15 surgeries that day with no sleep. I was his last of the night. It was a damn shame.

I am still experiencing difficulties from the endo but not near as bad as I did before the hysterectomy. I do know its still in me around my kidneys and it does cause me great pain some days but I am managing through it. I was asked to start taking the Lupron again but have refused it. I did not want to add to my pain. All in all I have to say this has been my longest running ailment out of all of them and hard to find. It can only be seen through surgery, no scan will show endo.

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