Monday, April 10, 2017

Stormy Seas

A few months ago I had some big ideas of where this year was going to take me. I was trying some thing new for my health, focusing on being able to once again contribute to my families finances, changing up my blog and committed to sharing my story. January and February seemed to comply with my best laid plans and then March rolled in and things just kind of go flipped on their head. At this very moment I am trying to my best to ride out the storm and when the waters calm enough for me to get my bearings, I can re-evaluate the course I am on.

After sharing some little wins with my health and the fact that my the pain I usually experience around my cycle and a full moon was gone, the winds of change blew in and the pain came back. Not only did the pain come back but everything started to go in a downward spiral. I am having days as bad as they were right before my diagnosis or during the first of year or so of treatment for Lyme. I just don't know how much more of this I can take. 

My brain is so inflamed and jumbled up right now I can guarantee my spelling and grammar will be off and the words aren't going to flow smoothly as I share whats been going on. It's important that I share this for those of you that have been following this journey, for myself so it clears my mind somewhat and for those that is may help. So please bear with me. 

For some reason my nerves are not happy. The one symptom we had managed to significantly decrease and for an extended period of time was burning nerve pain. The ghost that sneaks up and holds the invisible cigarette lighter against my skin has decided to come back and visit my regularly. I can be cooking dinner, driving down the road, or laying in bed and the searing, burning pain is so bad I am surprised there are no blisters or scars. My muscle pain and weakness has returned full force. I am back to wanting to cut my arms off because the discomfort is so bad. I am battling my seizure type activity regularly. My legs are restless and I just can't get comfortable. I am having muscle spasms all over. 

My heart is acting up again. Palpitations. PVC's. Recently I had to walk a short but somewhat steep hill and I had some chest pain. It went a way quickly but it is still scary. The only other time I have really had chest pain is when my heart rate had jumped up to 272 bpm on treadmill stress test. I get short of breath really easily and just don't feel good. 

My brain is not functioning well. I am confused, lost for words and anxious. I start sentences and stop talking mid way through with out realizing it. My 10 yr old told me the other day I keep doing that and how something is wrong with my brain and I'd better see the doctor. Oh if only there wasn't so much truth behind those words. It really sucks when I have to look up my 5th graders spelling and vocabulary words or words she needs help spelling because I just don't know any more. 

Fatigue. Or should I say FATIGUE! I maintain to this very day that if I only had normal healthy energy and the ability to sleep well and feel rested when I woke up I could live a full life with all of my other symptoms. Fatigue is the one thing that has never gone away. I have been dealing with it consistently for 20 years now. And it's only gotten worse. I am back to being severely exhausted so much so that I can not always stay awake through the day. Miserable. Most days I get the kids to and from school at least. Part of me feels like my body continues to adjust to what I am dealing with. So in someways it may seem to you like I am doing more, and maybe I am, it is not because I have made such great improvements or that I have put the disease into remission but more so that I have learned to survive with a new normal. A certain level of feeling bad becomes normal so I have to feel that much more crappy for things to take me down. Something has got to give. I feel like I am in limbo or some other "in between" state. I know this sounds horrible to say but I am committed to keeping it real so ...sometimes I wish things would get so bad that I was stuck in the hospital. Then the seriousness of what I am facing would be evident. It's like get better or get worse but don't just stay in this in between state that keeps functioning enough for people to think your doing fine and yet bad enough to make you look just plain lazy. 

I know I am at the heaviest weight of my life and extremely out of shape and both of those things aren't helping the situation so I am trying to refocus on those areas. While I do have an appointment to see my doctor next week, the reality is so much of this I just have to figure out on my own. If money were no object I would stand a better chance of getting things figured out but even then this whole mess is just so complicated. It it critical though that we make some way. Not only have I lost a good part of the last six years with my husband and kids, and the my oldest will be gone before I know it but there health is becoming more of an issue. I can't put dedicate what I need to, to help them if I can't take care of myself. And so the story goes. 

This leads me to where my kiddos are in their journeys and my current worries and stress. My 13 yr old continues to be monitored by a neurosurgeon for her Chiari Malformation and Syrinx. She recently had a repeat MRI early than expected for some unusual persistent head pain in the back of her head. All remained unchanged with her other issues which is good but we had no known cause of her pain. If I hadn't shared in any early posts, she also broke her hand just before thanksgiving in a freak accident. It was a fairly traumatic injury and besides breaking her second metacarpal she lost a lot of skin about the size of quarter on the top of her hand. Her scare continues to hurt, the coloring in her hand is off just a little, and she is now having pain along that metacarpal. UGH! She has some random aches and pains and still some dizzy episodes so we continue to run tests, and when all comes up clear I just check the Lyme related box. Unfortunately trauma can cause things to get out of control so I am really monitoring her since her accident and am hoping this doesn't unleash the wild beast of this illness.

My 10 yr old has put me through the ringer the past few weeks and I just have this gnawing feeling in my gut something bigger is going on. She along with my husband and other daughter had been sick earlier in the year with a flu type virus. We managed it at home and either I didn't get it or I did and maybe that's why I am having an issue at the moment. I have never seen my hubby so sick. Fevers, body aches, sore throats, etc...Jump ahead about 4 or 5 weeks and my baby started in with a low grade fever and just not feeling great. It would come and go on it's own, disappearing for  24+ hours before returning. She started sleeping a lot, not eating. Blood work showed an elevated SED rate (which indicates inflammation) and she had (actually still has) and swollen lymph node in her arm pit. Long story short after almost a week she was diagnosed with bacterial pneumonia. I guess it was making its round at school but it was just a little crazy the way hers presented and I am thankful that I was persistent with the doctors that something was going besides the standard virus. She lost almost 3 pounds in a week and she is a string bean to begin with so we are working hard to get the weight back and she is still taking it easy. She gets worn down somewhat quickly and just still isn't a 100%. I do realize the lymph node may totally be related to the pneumonia but I am keeping my eye on it. In addition, she has these spider angiomas. They are typically considered benign. Just maybe fragile blood vessels. I had some as a kid too and they aren't all that uncommon. At her first doctor visit for her ongoing fever and lymph node issue the doctor saw one on her hand that she thought was a petechiae that can be a sign of Leukemia. That caused her to start looking at my daughters hands and arms. While what caught her attention was just an angioma she commented about how many there were. While she doesn't seem incredibly concerned about it there were about 12 which is on the higher side. Usually there are only a few. Well today I found 3 new ones. There isn't any really clear information on what they may mean for a child. They can be indications of liver issues but so far we don't have any other symptoms to go on. So while I am trying to remain calm my mommy sense just is nagging me so I am doing my best to stay on top things. 

I am sure I have so much more I could say but I am tired and brain has decided to give up for now. I once again don't know where I would be with out my faith in God. Frankly I have cried, yelled at and questioned Him a lot lately. What an amazing father He is to love in spite of this. As angry as I get with Him somethings He is also the only thing that gives me hope to go another day. I've got some special people fighting some serious health battles I am keep in my prayers and honestly I'll could use your prayers too. Preparing to take on what ever challenges tomorrow holds for me. Thanks as always for your support.

Wednesday, January 25, 2017

And So It Begins

If you had the chance to go back and do high school again, would you? The answer for me is a big NO! I guess if I could take what I know today and go back and make different choices, I may consider it. But that is only a maybe. I absolutely mean it when I say that those 4 years were some of the most painful and difficult of my life. I left my small school and best friend behind (she is a year younger than me) and entered the crazy world of the unknown. For some people this may have been an opportunity for a fresh start and believe me I was initially hopeful that is what my future held. But I was lost in the crowd, the chaos and my own self debt. I thought I was doing the right things to be successful. I joined a fall sport. I was nice to people, at least I thought. (I look back now and realize that maybe my shyness and insecurity came off as cold or stuck up. I see it in oldest daughter. No wonder people would comment on the dirty looks I didn't even know I was giving. Sorry I guess I can't control the face.) Going to class and practice wasn't the tough part. It was the time in between, the passing periods, morning break and the most difficult of all...lunch. I couldn't tell you what I did that first day at lunch. Senior lawn, Juniors over here, sophomores over there, freshman? It was hard enough to figure out where to go let alone doing it alone. There was a girl I became good friends with on my field hockey team but she had a large tribe already and it wasn't easy to just join in. I remember feeling relieved at seeing a girl that lived up the street and thinking I could hang out with her and her friends. They had no problem letting me tag along but there was only a few of them and things like smoking cigarettes out of a soda can wasn't really my scene. I guess I didn't really have a scene at that point but I knew that I didn't want what they had to offer. So most days it was wondering around, probably not eating trying to look like I had some place I belonged. 

Sophomore year couldn't come fast enough as that meant my BFF and I would be reunited. I am happy to say that we are still BFF's today and I don't know how I would have survived with out her. Now I at least had some one to hang out with at lunch even if it was a bunch of freshman. I don't remember how this next phase all started but our group expanded. A couple couple sophomore guys joined in as everyone was starting the whole dating thing. I found myself with my first real boyfriend. A guy who seemed to know everybody but wasn't exactly in with the academics or jocks. My luck was changing. I now had a crew and a boyfriend. If I only had known how quickly my life was about to change. 

My church youth group went to a music festival for a few days and when I returned my boyfriend was convinced something had happened while I was up there. He questioned me for hours at a time, late into the night. My bedroom was right next to my parents at the time and I remember trying to talk quietly so they wouldn't hear me as I endured his interrogation. One particular night I gave in to every little detail he wanted to know. I had not cheated on him but he felt I had not behaved in the way I should have and the name calling began instantly. I sat there crying and apologizing when I should have just hung up the phone. The phone call that night turned in to not stop verbal abuse. I was called the most horrible things and yet I stayed. I answered the phone when it rang and allowed myself to be verbally assaulted. As much as it hurt in my mind I thought I can't hang up. It's rude to hang up on people. Mind you, I have to loving parents and was not brought up in this kind of environment so where I got the idea this ok or I deserved to be treated this way I'll never know. I can picture being on the phone in my bedroom and wanting to punch my hand through the window to take some of my emotional pain away. Or being on the phone in the kitchen the first time I was driven to think that maybe suicide was the solution. (I believe now that my Lyme Disease played a role in the anger and depression I was dealing with) At some point I had the nerve to call it quits and we broke up. It didn't end the control he had over me at this point. I was scared and I thought if I could just keep him happy, tell him what he wanted to know he would leave me alone. But nothing worked. I was stalked and harassed. Our mailbox was blown up and bashed in. He tracked me, my BFF, and a couple guy friends down one night where him and his friends followed us, he jumped on my car and made references to having a gun in the car. 

On particular night he found me at the mall with a girlfriend talking to another guy. He pinned me up against the wall, punched it next to my face and threatened to jump off the second story. He followed us to my car and when we thought he was gone my friend and I headed back in the mall. Before we knew it he was chasing me across the parking lot and my friend and I got separated. She called my parents frantic that the last she saw was me being chased. (This was before cell phones mind you) I was finally reunited with my parents and my friend. The craziness continued. Regular threats of suicide and when I would call to let his family know I was told if I wouldn't make him made he wouldn't be doing this. The final straw was my senior year when he paid someone to start a fight with another guy at school I had gone out with. I found my self at the court house getting a temporary restraining order until we could go to court. After our hearing a 3 year restraining order was granted. That certainly didn't do anything for my popularity although at this point the rumors and lies he spread about me had already solidified my place alone. My self confidence continued it's downward spiral. My senior year I gave up playing any sports. I left school with out the varsity letter and lettermans jacket I had dreamed about.

While the piece of paper ordering him to stay away from me, my family, my house and my work helped a little bit it couldn't stop the mental anguish I now suffered. I was constantly afraid I was being followed and believe me there were plenty of incidents to back up the fact that that was indeed happening. I was worried non stop. He had his friend come by my work one night and question me on all sorts of things while he sat in the parking lot. Not to long after that he showed up at my work with a date. I was almost physically sick and scared for my life as I hid in the back room and called the police. He was arrested a short time later.

I did have a few random incidents that I don't know who was responsible for, one of which was a phone call telling me they were in my driveway watching me and if I hung up they were going to kill me. This whole thing has been a big struggle in the area of my faith. I try to convince myself I have forgiven him but I think deep down inside I haven't fully. Forgiving someone for such horrible things when they have never said they are sorry is not an easy thing, It is definitely something I pray about and continue to work on today. I still carry fears in the back of my mind that he may come back. While I have absolutely no evidence to support my fears they are there none the less. Strange calls, cars following me for too long...I am working so hard to break free from these chains that bind me. I know by not forgiving and living in fear I am not trusting God and I am only hurting myself. Again easier said than done but things I am working on.

The profound effect those years had on my self confidence are indescribable.  I just wanted to feel liked and accepted one time. As hard as I tried to go out and become this confident successful person the lies I had been told by others and the ones I told myself were winning the war. They have continued to wage a war in my head everyday. I've caught myself continually seeking others people approval and just wanting other people to be happy. I always seemed to have more guy friends than girl friends but I wasn't the one they wanted to date.

It make me sad to think that I am almost 40 years old and only know am I beginning to see just how damaging this mindset has been. More importantly I realize that I have a God that loves me unconditionally and created me just the way I am for a reason. It's easy for me to tell others how much they are loved, and how special they are and that God has big plans for them but it has not been easy to believe those things myself. Since my experience in high school I have always wanted to share with other young woman so they could avoid those same mistakes I made and they could see their value in being a child of God. I think one of the big turning points for me this last 6 months is looking at my 13 year old daughter and seeing how desperately she needs this message as she gets ready to head off to high school next year.

Through some soul searching, some time with God, some personal development and the blessing of meeting my Beachbody coach Courtney I am beginning to see the value in me and the value in my story. I am far from perfect and I have a long way still to go in my healing and the change in my mindset but I don't want to wait any longer. After some difficult events for my family this past year in addition the the continual stories in the news of these young people being bullied and committing suicide, or other self destructive behaviors I realize it is selfish of me to not share my pain and my transformation. What if...what if just one person benefit from knowing they are not alone in their struggle, that other people have been there, that other people do care...what if.

For we are God's handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.- Ephesians 2:10

Monday, January 16, 2017

New Year, New Direction

(Disclaimer* After much thought I have decided that even though I am taking things in a new direction I will continue to use this blog. I will still update about my journey with Lyme but am choosing for the most part to share my heart on some on other things)

As bad as my memory is, I remember this like it was yesterday. The day I showed up to school and was promptly told I was a "poser".  I guess I should back up a little and give you some background. I grew up essentially an only child. My two half brothers are quite a bit older then me and didn't live with me for very long at least that I remember. I was attending a private Christian school that went from preschool through 6th grade. It was the only school I had ever attended. While I had friends I certainly wasn't part of the popular crowd, which is funny to even think about since there were only 15 kids or so in each grade. In any case I somehow drew the negative attention of others and the relentless teasing began. (To be fair I don't believe any of those people could look back now and see how mean they were. In fact on of the main players in this story told me years later he had a crush on me and never remembered being mean.) I would bet for at least 2 years I went home in tears everyday after school. Leading up to this particular incident, I had been being made fun of for my sense of style or maybe in their minds the lack there of. If I wanted to be on top of my fashion game I needed to get some surf clothes. After all we lived in sunny San Diego and surfing was part of our culture. I remember pleading my case to my mom on how I needed to find some surf clothes. I convinced her to drive me the 20 or so miles to the big mall that had recently opened. They had a Gotcha store (for those who remember 80's surf brands) and maybe one other place what was sure to have just what I needed. Back then there weren't any brands or lines for girls so the standard t-shirt was about your only choice. I remember picking out a bright blue Hobie shirt. It had a little white dog with a black ring around it's eye. Perfect. 

Thinking I had finally figured things out, I proudly walked in to school with my new shirt. If I remember correctly I had made it over to the swing set when the same kid that told me surf clothes were in burst out laughing and told me I was such a poser. My spirit was crushed. I couldn't tell you what started it all but I was teased endlessly for everything from being too flat chested to being a mommas girl. Day after day I went home a cried myself to sleep. So it began, the downward spiral of the friendly little girl who didn't know how to stand up for herself and just wanted to get along with everyone. I'm not sure my self confidence ever had a chance to develop. I knew my mom and dad loved me. I knew Jesus loved me. But I guess it wasn't enough to overcome what the other kids had to say about me. Those moments, those words, followed me from then on. They went with me to my new school in 7th grade. Another small private Christian school where once again I just couldn't manage to be part of the popular crowd. There weren't the tears this time as the out right being made fun of didn't happen. But there was just enough to somehow make me "frienemies" with the most popular kids and I still hadn't learned how to stand up for my self or where my self worth truly came from. It was just two short years before I was thrown into the wild world of high school. My graduating class of about 15 kids was split up amongst 4 or 5 high schools. You would have thought that being in a much smaller group of 4 or 5 kids we would have stuck together, looked out for each other but that wasn't the case. A couple of the kids had older siblings so they already had people to look out for them and older kids who knew there name. And the popular crowd stuck together. I was now in a sea of few hundred kids and no body knew my name. While I wish I could say I thought of this as my chance to start over and make a new name, a new identity I froze. My self worth was already so damaged, I didn't know how to start over, how to write a new story. Those 4 years in high school were some of the most painful years of my life. I'll save those stories for next time. 

You may be wondering what the reason is for me sharing my child hood sob story. Why would people want to read this and what purpose could it serve? The answer is not an easy one to share. The truth is that little girl who just wanted people to like her 30 years ago is now the grown woman writing this blog. Those same insecurities, same uncertainties, feelings of being unworthy and being a failure plague me to this very day. About 6 months ago, in the midst of a rough year for my family, God just really laid it on my heart that I needed to deal with these issues. I needed to truly see myself as He sees me. While I have started down that road, I can tell it isn't going to be easy or quick. 

One of the things I have learned so far is that it is incredibly important to be a truth teller. We are inundated day in and day out with tv, radio and social media telling us everything we need to do, to have, to change about ourselves to be okay, to be liked, to make in this world. Jealousy and insecurity are fueled by our friends posting on social media how amazing their life is- All The Time! We feel the need to show the world how together our lives our. Soon we begin to lose touch. We can't truly relate to each other anymore because behind the scenes we are trying to keep up with or out do each other. Now I am not saying announce on Facebook that you couldn't pay your bills this month, or post on Instagram you failed a college class. But please, post a picture without erasing every line and wrinkle on your face with some crazy filter and when someone asks how you are feel free to say not so good. You aren't always fine or okay. Life isn't always amazing. Being real allows us to be so much more compassionate and empathetic. Our relationships become that much more authentic.

There you have it. I am far from loving myself, far from looking in the mirror and believing I am beautiful, far from feeling worthy but I am getting there. If one person could benefit from me sharing my struggle and avoid the years of pain I have subjected myself to then it is worth it. What really fueled my need to do this was my two beautiful daughters. I would do anything to keep them ending up here where I sit. Just the other day I sat outside the dressing room as my 13 yr old tried on dresses for an upcoming school dance. All I could see were her feet turning this way and that as she evaluated herself in the mirror. In that moment I wondered what she told herself. What did that voice inside her head say and how had things I had said or done affect those things? What about tv, Instagram and friends at school? What truths was she believing about herself? Did she know how much her dad and I loved her, and Jesus loved her and was it enough to overcome the lies of this world. It scares me to think about. I knew then without a doubt I couldn't keep this to myself any more. This is my story, it is mine to share. My prayer for those of you reading this is that you know your value and your worth and how much you are loved. If however, you find yourself in my shoes either as a young lady or a grown woman I pray you will go on this journey with me. That together we can overcome the lies the world feeds us and we can find our true identity in the one who made us. You were created for a purpose and your story is not over. 

Ephesians 2:10 For we are God's handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do. 

Recommended reading: Finding Your Brave by Holly Wagner