Nov 18, 2018

I was contemplating a lot of stressors in our life right now and I had to go in my prayer and praise notebook. I looked back at all the things God has walked us through this year, not even counting the last 2 years plus of event after event after event. After looking back, I cant help but be thankful for all that God has walked us though. A little over a year ago I had been working extremely hard by myself to get my Dad transferred to Va from PA after he had multiple strokes that they attribute to his alcohol use, that left him blind in both eyes and mentally incompetent as well as physically unable to move. It has been one extremely financial strain after another on top of all my daily medical expenses. I've been on Iv treatments, at least 2 days every 3 weeks for almost 6 years, as well as multiple surgeries. I was the sole person doing everything for my father financially and physically. I had to petition for guardianship of him which was a complete nightmare because that involves going to court which costs over $5,000 to start and we had to wait over 6 months to get a court date meanwhile arguing with insurance, his condo, his job, etc trying to keep his whole life afloat. My Dad was getting denied to all of the places because he is basically an Alzheimer's patient with vascular dementia because of the damage from the strokes.  When it all first happened they didn't think he would make it. He was found days after laying there in his apartment non responsive. I was called while I was dealing with my own heart problems while I was admitted to the hospital. So I had to leave the hospital and fly up to PA because none of the other family, including my brother wanted to help. Im physically disabled, so this was extremely hard for me to fly, with luggage, etc and take 2 buses and a train to get to the hospital and with my luggage then trust all of this with air bnb. There was a lot that happened and I hope one day to get it all out in my book. God made a way when there was no way. He provided financially, physically and emotionally. I will always be grateful I was able to be there. My dad was on a vent in ICU, unresponsive and not able to breathe etc. It was another traumatic experience after I had my mom unexpectedly pass away months prior, which also brought up flashbacks from 4 years prior when she was on a vent for a month and not expected to make it. When my mom passed there was a lot really painful things that happened, I'm the oldest of 4 and being the oldest I held the most burden to arrange everything and the one everyone was angry with. Another chapter in the future book. While I was trying to get my Dad into the next step rehab I was running a community group at my house, my kids are both in school and busy with play practices 2x week. My husband is a firefighter and was helping to co lead a men's community group, as well as Im going to a womans group dealing with past trauma. In the meantime, I have Iv treatments every 3 weeks, 2 full days, a lot of side effects from those as well as several autoimmune diseases. This time last year I was having a bone marrow biopsy done because test results were abnormal and they thought I had a blood cancer. It showed the anemia but the biopsy didn't show any blood cancer. In November we were scheduled to go to court for my Dads guardianship and conservatorship. A few days before our court case we received papers that my uncle and my dads father had petitioned that they did not want me to have guardianship because they thought my Dad had money. They had not come to see him at all in the 6 months since his strokes and they had no intention of taking care of him like I had been  the past 6 months they were only worried about money. My Dad had gotten moved to a rehab but within 12 hours they didn't give him his medicine and trucked him all the way back to new port news from virginia beach and refused to take him back, instead of taking him the ER 2 minutes away when they claimed he needed medical help. When this happened because of the court cases and no insurance my Dad was stuck in the hospital bed and went from being able to walk with help to basically a complete vegetable because they no longer worked with him and he was stuck in the hospital bed laying flat. I can't drive and so I could only go visit only so often and make sure he was getting proper care. Being that I was a nurse I found multiple times he wasn't being treated for infections etc when he needed to. He fell several times and had more brain bleeds in the meantime. We awaited our guardianship trial, but the hospital was no longer cooperating because we were now being fought for custody. Court was postponed because my uncle and so we rescheduled for December. December came and we met with the guardian ad liet. She is the one who meets with all parties as well as with my Dad and tries to figure out what is best for the patient. My uncle, who I have not even seen in over 10 years, and doesn't know me, claimed all of these lies about me. He paid my Dads ex wife to write a bad letter about my character, he took pictures and posts off my Facebook and tried to make me look like a horrible person. He tried to use a Gofundme petition I had made 6 years ago for my treatments to make me look like we were only taking care of my dad for money. He had no idea, my dad didnt have money, and that all of his money would be going to his treatment. I met with the guardian and everything she asked of me, I showed her proof where my uncle was lying. She was very much on my side. He claimed I wasnt communicating about my Dad and I have been the whole time, I kept all my emails and text messages and voicemails. What we were never told before we signed with 2 lawyers was that we wouldn't be able to get a bond for the conservatorship because we had to foreclose on our house, and filed for bankruptcy due to my no longer being able to work and all my disabling health treatments, and we no longer had credit or credit cards. So we agreed with the guardian before court and signed papers that we agreed my Dad would best be suited to be taken care of by Jewish Family Services. During court, my Uncle and my grandfather tried every single thing to bad mouth my name, and our family even though I was no longer seeking custody. The moment I stepped off the elevator I heard racist remarks about my husband, and they were cursing at me the whole time we waited in the hallway. It was very hard to sit there with all the lies spewing out. My heart hurt, I’ve wanted nothing else than to ever be loved and have family who loves me, and that's just not been my story. The guardian dealt with my uncle and grandfather who are very racist and sexist, she worked it out very well. My dad was transferred to a group home a month later and then found unresponsive again. He was sent to the hospital and not taken care of well there again. Finally they got him into this other rehab because luckily I had filed for disability for him the very same week he had moved to VA so that he could get things situated. We were still fighting with his job for past money he needed. In order to get medicaid they have to sell his condo. We are not allowed to go and see my dads condo or get his items because again my uncle and grandfather are STILL fighting to get his stuff claiming its their things even though their residence is 4 hours from his condo. My brother is still not talking to me and I know he cant handle anything that has happened after dealing with all the trauma with my mom also. I couldn't deal with it either, but God gave me strength. Its been extremely hard and the stress has continued to make our life living hell. My Dad had a will where me and my brother were to get properties in Hawaii, but He never got it officially signed so we can not get those properties. Now his condo and those properties will be sold and Jewish family services will get the money. My dad was never there for me, our parents divorced when I was 2. He was an abusive alcoholic, who kidnapped me when I was 8, and lost ANY visitation rights when I was 12, but he always said he would do something good for me one day. After my mom died and she hadnt had a will I begged him to make sure he had everything in writing, because it was a nightmare. He told me he did. My mom was only 52, and my dad was 58. Within months lost both of them in the midst of increasing health battles. In the mean time while battling all of this, I was getting passed all around the state in search of better medical care.

My Neurologist had referred me to UVA hospital in Charlottesville because some other testing was abnormal and I could no longer lift my arms. My muscles were progressively getting worse. I saw The Neurologist there in January this year who scheduled surgery for a muscle biopsy. In February I could barely walk from my bed to the bathroom without being out of breathe. My heart had gone into heart failure again, it had been ok for 3 years. I scheduled the muscle surgery for After our woman’s conference so that I had something to look forward to. In the meantime I'm going to church sunday nights and praying with lots of women giving their life to Jesus, and knowing God is saving me one day at a time. He refreshes me as Im refreshing others. Going back and forth to Charlottesville has been extremely expensive because we have to drive, 3+hours each way on good days, and then pay for childcare, and/or beg people to help since we have no family.

In April we got a call from mutual friend and an extreme situation happened where we found ourselves needing a lawyer, a $2500 lawyer bill to start, and in the most stress I have ever been in my whole life. I can handle when people come after me, but I wasn't prepared or ok, with dealing with attacks against my children. The worst possible circumstances were happening. I had just gotten told Im in heart failure, I need heart biopsies, as well as I had a tumor removed from my intestines the very same month! Now Im facing something I never ever could have ever seen coming and I can't ask people for help because we needed to keep it small. The tumor came back showing precancerous cells so he went back in and didn't see anything else so I need to follow up in one year.In April we went back to Charlottesville as well to see the genetic counselor who ordered mitochondrial testing and sent me to the genetic Dr at UVA after getting my results back.We had decided because of mounting debt with needing to go back and forth and stay in Charlottesville we needed to raise funds to pay some bills and do a yard sale which was very stressful, and a lot of work. This we determined before we even received the lawyer bills.

 Im 33, but during this whole time I keep seeing Wall after wall with my health. They had issues during my heart biopsies. I was “tryin to crawl off the table”. It appears my trauma from my life comes out when they give me certain meds and they couldn't get me to go down. Eventually they did, but I had a lot of chest pain after which they said was from the biopsies and lupus, connective tissue diseases. In May and June we got more bad news concerning situation we found ourselves in and every time it seemed it couldn't get worse it did. We lost friends, cost us a lot of money, very traumatic for children and us, and the stress has caused unrelinquishing anxiety for us.

In July the Drs decided I was losing too much blood from my urine and ordered a cystoscopy and biopsy of my bladder to make sure there was not more tumors. I had a lot of issues with my bladder and needed continuous catheter extremely painful situation in the hospital for a few days, and home with Iv antibiotics and bags of fluids. They determined blood is coming from kidneys but I'm not agreeing to a kidney biopsy right now because the function numbers are good. In August we found out that the extreme situation attacking us, was being dropped, but really and truly it hasn't gone away.  The effects are there every single day, we are dealing with it, with God. God is healing our family a little every day. It has very much affected my kids and in a bad way, as well as me. I was then informed because I had been in the hospital for days I was considered a new contract with home health so my home health nurse I've had for 6 months can't be my nurse anymore because they can only do new contracts with a different agency. I was devastated because it takes me forever to trust people and I hate when I have to start over with new people but I've had no way of changing it. Benadryl is on backorder and I need it with my treatments and so it's been a lot more extreme reactions because they cant give it to me like I normally do.

I got autoimmune pancreatitis in October and was in the hospital for a week. It was found out on scans I had colitis as well, infection. I was told I needed surgery on my pancreas because there was suspicious things on my scan. In the meantime I finally had follow up with the genetic counselor in Charlottesville, we waited 7 months for. He went over my genetic tests and determined I had a mitochondrial disease that needs to be treated but there is that many Drs who understand this particular genetic mutation yet. If it's not treated my kidneys will fail and I will continue to get worsening health and he ordered an expanded mitochondrial testing. I have to wait another 6-8 weeks for those. While we were in Charlottesville, my ankle rolled again, and I rebroke my ankle and retore the ligaments and tendons that keep them all together. Now requiring reconstructive surgery. I just had a transfusion because I'm anemic and my other labs are low, and I had an allergic reaction to it. Again, they don't have enough IV benadryl so we have to wait until its properly backed up so that I can get more before my ankle surgery. We are praying for provision and support for this as we have no family. When I look at the surmounting problems I think back to all that God has done for us this year and given me strength to go through. I'm just praying for God to breakthrough!! The miracle is coming, I know it is!