I am crazy!

I am crazy! Well we all know that I am crazy just not the way I am talking. There is nothing wrong with me and this is all in my head.  I have told myself this probably a 1,000 times if not more. My family, friends are all starting to think that I am crazy as well. Well maybe not but to me I feel like it. Doctors are starting to think I am crazy and that is not a lie. I keep bringing a list of symptoms that grow each day. I have always had health issues my adult life. At 24 I had a hysterectomy because I suffered from endometriosis and poly-cystic ovarian syndrome Then at 27 my issues with my spine began. After my spinal fusion I had hoped that things would heal and I would go back to being the 27-year-old mother and woman who I once was. Unfortunately that did not happen it was a long journey. I never regained the full feeling in my right leg again and the pain was just horrible. The doctors really had no answers for this. I was never in a car wreck, or had an injury to my back. I just woke up one morning and my back was like this. I would go to doctor to doctor and listen to what they would say. I would try different medications and oh was that horrible some would knock me out to the point I had no idea what I was doing, and I could not even function, and when I say no idea what I was doing I was falling asleep everywhere I went. So that was not the answer to drug me to the point I can not function.  Some medication would cause anxiety and depression. Some doctors even said it was mental illness that caused this. I have seen some crazy doctors. I would try everything a doctor would say because I wanted to be me again. So if that did not work we would stop that and than look for another doctor to try what they had to offer. This went on for years. I would go through so many test which many were painful and exhausting then to only hear I am sorry we just truly do not know how to help you and we just don’t know what is wrong, here try this medication or this thing. Some test were easy and not near as bad as others such as  CT scan, X Ray, blood work and MRI. The worst one was, I would have to have a nerve conduction study which is when a needle is stuck in your leg or arms or anywhere to your nerves and they send electricity to shock you until your nerve responds. I would have this done every 3- 6 months for several years. It was horrible and so painful. I could hear them turning it up each time and my nerves not responding so the anxiety grew worse and worse as they increased it because I knew it was going to be such a large shock. I said enough is enough and stopped going to have those done as it was unlikely that I would regain full use of that leg. I could not under go that pain anymore.  I had so many epidural steroid injections. Just to try to feel normal and to try  live somewhat pain-free. I lost my happy. I was mad at the world. Everywhere I turned I felt I was having the door slammed in my face. We would still never have any answers and the defeat I felt each time was horrible. This is when the depression and anxiety really began to get worse and worse. One of the hardest parts was I was on steroids almost the whole time so I had a huge weight gain and steroids play a big part in your mood being up and down. I felt ugly and did not like myself, my face was so chubby and I still to this day have not lost that steroid weight.  I was mad at God for doing this to me. I felt he took away so much from me, he took away me being a good daughter, sister, mother and wife.  I would never run again, sometimes struggle to walk and my life was just never going to be the same. I was mad that at 27 years old this is what I was facing.  I was not a good friend anymore I did not want to do things with anyone because of the pain, I was in many of days. I would call to cancel. I still to this day have to cancel on things and I hate it every single time. I get this knot in my stomach and anxiety about it. I will lay in bed and cry and feel so much guilt because I know I have let that person down.  We will talk more about this topic a little later. My anger grew and I just was not getting over it. My joy and my life was changing the pain was not getting better. I felt as if I did not have anyone that truly could understand what I was facing. My husband who has been an awesome care giver could not fully understand it at times. I would be in the worst pain in my entire life and I had no one to help me. I felt my life was beginning to be out of control and I did not know what to do or where to turn anymore. I never felt good anymore and the joy was just not there.  I went to therapy for 2 years and that did help me in so many ways but there was something holding me back. I was still mad at God. I tried to keep telling myself that he had a purpose and that he does everything for a reason, but I did not believe it my heart. I could not find my purpose in life.  I remember going and talking to our priest and saying to him I am so sorry for being mad at God and I am so angry with him. This was a journey that I struggled with for years. Over the next few years my health was truly a struggle with lots of ups and downs but we still had no answers. I did have the most wonderful gadget implanted that was my spinal cord simulator and that was wonderful. I had discovered that I needed to be a stay at home mom and that God had a plan that I needed to be home with my kids.  We have to always trust when we can not see what the Lord has in store because his plan is so much greater than ours.  Finally after a very long long road in 2016 after years of struggles with my back ,many hospital stays with staph infection, chronic pain and more. I was getting answers.  I had found doctors that would listen to me, that heard me for the very first time and wanted to  find what was going on. I can not tell you how good that felt and to know that I might not be some what crazy. My new primary care doctor here in my hometown kept telling me I know that something is wrong we will find it I promise we just have to find that right specialist and she was not wrong. She pushed me to not give up that I was not crazy. When all the other doctors did not believe me she did. She saw the muscles in my arms deteriorate, the sores on my face, my left hand that no longer worked, and headaches that would get worse and worse. My blood work also showed signs of an autoimmune disorder, which one she did not know. After Vanderbilt was not successful in finding anything that could be the true cause I thought it was hopeless and that we might not find the answer. If I am at Vanderbilt this big hospital and they can not find anything wrong  I am seriously crazy. Everyone around me thinks I am fine and this has to be all in my head. They think that this pain is just for the medication and that my speech and mind and this is just a show now. As things got worse and worse and were looking more like MS she said let’s try Paducah. I was thinking here we go again I am going to walk in here and they are going to tell  me I am crazy I just do not know how much more of this that I can take. I could not call my family and tell them we did not have answers again. I had prayed so hard for God to give us the answers we needed.  With Gods wonderful grace we were blessed with awesome doctors who found my large issues of  Chiari Malformation  I, brain cyst and Lupus. So guess what I am not crazy!!!! It is not just all in my head well maybe since I have a brain issue! You have to joke about it, we do all the time. So my goal for 2017 was for Happiness. It truly has been a long hard road, but I am thankful for every moment of it. I know that I have grown from it. I knew God had a plan. Did I want to trust him and wait to see what that was all along? Nope I sure did not. I still do not at times. My goal is for my family to grow from all of our struggles, I think we are closer and stronger together. For my kids to know that we have to appreciate each day. We have learned that it is just the little things that matter. Our medical bills are seriously ridiculous and I am sure we will have lots more, but the most important thing is not things you can buy it is being together and having those happy times. We have a lot of those and my goal is to stop and enjoy those happy moments. I find the joy in the small things. I am so thankful for 3 of the best people on earth to go on this journey with. They walk with me daily and put up with my crazy.  My husband and my kids are my rocks, they are my happy. As I typing this the thoughts of my kids and how they have grown up makes me so proud and so happy. I am truly blessed with family and friends for this journey and without all of you this is not possible and you all make up my happy!

When I wrote all of this was before my appointment in Ohio with the Neurosurgeon that we had waited for. It was a really good appointment and he confirmed I am not crazy. I was born with Chiari Malformation I, then he also diagnosed me with what is called idiopathic intracranial hypertension or pseudotumor so I am not crazy! If these doctors in the past would have scanned my brain. I am so Thankful  to God that he has me were I need to be! Please follow me on my journey 2 my happy!  I can not wait to share more with you and also take you along with my health and life changes! Love and Hugs ALL

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