Escaping

Lately I have not been feeling the greatest. Between being mentally exhausted and physically exhausted and having to manage to keep my life together is a HUGE struggle. My body is sore in places I never knew could be sore. My right hip is turning more causing my knee to turn towards my other knee. I’m clumsy. I have no balance, and I am probably at the weakest I have ever been. Like literally having no strength, struggling to open simple things. 

There are days where I want to just stay in bed and cry. Although it solves nothing, it sounds lovely. Getting out of bed is a struggle, I usually have an energy crash around 3pm, then it’s on to forcing myself to do things. There are days where I don’t want to be here. Whether or not I mean in this physical world or where I am at in life, is up in the air at this moment. 

I usually have about 2 days in the week/weekend where I want to do something. Like escape reality. Escape the city life, where it is nothing but chaos and sirens constantly. My place of solitude is about 18 miles away, give or take. I can’t access it in the winter, but, during the summer it is my second home. 

A place where I can reflect on my life, what has happened and how far I have come to this day. Other times I think about how hard it is to live in this world. Then there’s times where I go and just become one with nature, and enjoy the fresh air. 

This is my home away from home: 

Reflections, on the ever so still river that brings me more happiness than I could imagine. Such beauty in nature, isn’t there? 

The trees are starting to change colors around here, and frankly, I am not ready to let this place go for the winter to roll in soon. To me the winter starts when fall is about a month in to it’s season. It snows around the end of October and that’s only a little over a month away! Ugh. 

Art; the only thing that can take my mind off of what is going in my little world. This is a digital edit of a “fluid painting” I did a little while back. Even tho it is chaotic, it’s calming at the same time. I am very tired, and have tons of empty canvases to be put to use, but my chronic illness is prohibiting my ability to do much of anything anymore.  

“Art is a step from what it obvious and well-known toward what is arcane and concealed.” – Khalil Gibran

Struggling

Sorry that I have been absent for a couple days. I have not been feeling the greatest this past week. Hell, this past month, really.. 

For about 7 weeks I have been on chemotherapy. Methotrexate, orally. I started out with one pill a week for 2 weeks, 3 pills a week for 2 weeks and then I started at 5 pills a week. Which now is my my second week of that. It has definitely taken its toll on my body.

To be completely honest, I don’t know why I am on chemotherapy. Other than the fact I tested positive for Human Luekocyte Antigen B27 (HLA B27). That can be anything. Psoriatic Arthritis, or Ankylosing Spondylitis, Reactive Arthritis, or other arthritic autoimmune diseases. I do know I fit the symptoms for PA, and AS. 

I am awaiting further testing from my rheumatologist. Have to have x-rays of my spine and lower back. After the x-rays, comes MRIs to fully diagnose my HLA B27 mutation. 

In the meantime I have to take the immunosuppressive drug. I used to have thick hair, that has thinned out quite a bit. Which is severely depressing. What’s more depressing is that I am struggling to find out what is going on in my body. 

Here is a picture of about how much I lose in the shower, every time. 

I know it may not seem like a lot, but to me, it’s a scary thought. I don’t know how long I will be on chemotherapy. I don’t know how long my hair will hold up, even with taking folic acid 4x a day. 

Body Pain…ugghh

I have been having widespread pain for about 4 years now… By pain, I mean debilitating pain. The pain where you can barely move let alone get out of bed sometimes. 

I have been on 3 different pain medications. First one was Tramadol, it only worked for so long, then gave me headaches. Second was Norco, stopped working for pain, they increased the dosage, had severe stomach pain after that. Now I am on Percocet, 3x a day. It’s starting to only work for an hour at most. Then after that, I am screwed. 

Some might say, “those are harsh opiods” or “damn that’s a lot for one day”… I want you all to know that yes, they are very harsh on your body and can be addicting to some. My next step is likely morphine. Sounds completely insane, I know. 

Here is what I take pain medications for:

  • Ehlers-Danlos Syndrome (connective tissue disorder)
  • Fibromyalgia
  • Arthritis of many types some still yet to be determined by blood work. 

I am 28!!!! I used to be physically active. I ran a lot, I was in track, marching band, and cheerleading. (How I don’t know. Literally the clumsiest person. Ever.) I thought maybe all the activities I did in school may have been the cause of my issues. 

Boy, was I wrong… My gene’s are mutated at some points in my chromosomes. I did not know I had a genetic disorder, I did not know it would cause so much debilitating pain. I go to physical therapy for EDS, but so far it has only flared my fibro up. 

I have the joints of an 80 year old….ugh. 

My body is literally falling apart. 

This constant pain is like surviving a rollover accident and feeling like you got ran into by a train. (I’ll get to my rollover in a different post)

P.S. there is no cure for EDS, only treatment. 

This Year In A Nutshell

So, on top of therapy and me trying to gain a grip on what I was diagnosed with… I was not prepared for all my physical health problems that were about to unfold.

In January I had a gallbladder removal, due to biliary dyskenisa. Meaning my gallbladder barely if at all functioned. Sure was a pain. Normal surgery. Horrible healing as it hurt like hell. Had a laparoscopic robotic assisted surgery. Creepy. 

Around the same time, I found out I had HPV 16. The kind that causes cancer. I had a biopsy done and they found pre cancer on my cervix. I had sat there for months freaking out because it always seems like I get the short end of the stick. Never had any luck in my life.

In May, I had a total hysterectomy. They left my ovaries. That was a very hard decision to make. My tubes were tied so it’s not like I could have gotten pregnant, again. But, the fact that I would no longer be able to bare a child by possibility of IVF. I pondered a while. But I realized it was more important to look at benefits for my health. I had heavy painful periods my whole life and previous adhesions in my abdomen cavity. Pain with sex, and generally it was entirely too painful to deal with.

Surgery took longer than expected. My bladder was adhered to my uterus. So while removing it, they had to dissect it off. Eek. I stayed one night at the hospital and it was entirely too painful. I was hooked up to a drip line for pain meds with a button to push when hurting. Oddly enough it barely helped. Instead of taking 6 weeks to heal, my body took 12 weeks. Ugh. 

Enough of surgeries… 

I have been through 3 different doctors because of severe joint pain, subluxations of my shoulders, bruising easily, and severe fatigue. I have been extremely flexible my whole life so I never thought any thing of it. My first doctor mentioned a disorder, but it never went anywhere.. my second doctor diagnosed me with Fibromyalgia. Was clueless as to what was causing all my problems. 

At times my blood work would come back normal, then other times it would be completely wonky. My third doctor, mentioned a connective tissue disorder.. Ehlers-Danlos Syndrome. That’s what my first doctor mentioned!!! Unfortunately my doctor could not diagnose me with it as he knew very little about it. So off to a rheumatologist I went. 

I infact have Ehlers-Danlos Syndrome, Hypermobility type. My beighton score was a 9/9. She said that it’s likely I have had it my whole life, She wanted to do some blood panels to rule out other problems as well. I have vascular problems and have to see a geneticist to confirm if I have that type of Ehlers-Danlos. 

She took 13 tubes of blood. Some tubes, I had never seen before. I came back positive for a gene less than 10% of Americans have. HLA B27 (arthritic autoimmune diseases). I also came back positive for ASCA(indicates inflammatory bowel disease like Chrons also autoimmune). Because of my HLA B27, I have been put on chemotherapy to slow the progression down. 

My life has literally been turned upside down again.. seems as though I am always surviving the unknown

Life After The Trauma

Let me start out by saying that burying your child has to be one of the hardest things to have to do. No one should ever have to experience it. Then having to deal with the loss of your other children to the state.. 

I  never mourned the loss properly, let alone at all. Me bottling it all in caused so much damage. I became extremely depressed, started to isolate myself. Wouldn’t go out of the house. I became paranoid and would always think people are judging me. But, were they really? No. Probably not. 

My relationships were very unsteady. I jumped around a lot. Then I realized I wanted to be with my daughters father. I loved him very him and to this day I still do. We got back together at the end of 2013. He has been my rock. My best friend. I have put him through a lot of stuff these past years. Always fighting. Me getting mad over everything. Even if it was little. Mentally and emotionally I was unstable. He stuck by me, just loving me unconditionally. 

January 2017 I had a break down and broke up with him. I was just so unstable that I didn’t even know me anymore. I regretted that. So bad. I was completely lost without him. A sobbing mess for about a week straight. I decided I needed to go to a therapist and work out my problems. Not only for myself, but for him as well. I wanted to spend the rest of my life with him.. we had planned it all before I had a break down. I needed him back. 

I started therapy in January! I cried the whole time. Let everything out and it felt fucking relieving. To have all that weight on me for so long, it was such a burdern and ruined a part of me. I was diagnosed with BPD, Borderline Personality Disorder. Damn. I was scared when I found that out. I initially thought I was a whacko dor having that. She diagnosed me with PTSD with paranoia, Major Depressive Disorder, And severe Social Anxiety. I see her weekly now. 

Therapy has opened my eyes up to a lot of things. My BPD is from my childhood trauma. I have likely had this my whole life, which explains my childhood outburts, crys for attention, and abandonment issues growing up. My PTSD came from my son’s death and everything involved with that. 

Having Borderline Personality Disorder does not mean I have personality issues. Infact, my brain doesn’t process emotions properly. I have a black and white way of thinking. I have control issues. And my fear of abandonment is still here to this day. My outburts are usually caused by my “fight or flight” mode. 

I am a person who has been through so much that life literally made me screwed in the head.. 

Here I am trying to survive the unknown. 

Back Story Continued

I made the decision to keep the baby. Regardless of the fact he was concieved by rape, I could not punish the child by aborting. I kept it hidden for a while during my senior year since I was the new kid.. It did not last long at all. I had made a few friends who were very understanding. I also had people in my school call me a whore. They did not know the circumstances, but it still ate at me. I never cared about school. Until I found out I was pregnant. My senior year I had almost a 4.0 gpa. Which was amazing considering my previous school’s gpa was about 2.5. I did it for my son, I didn’t want him to have a mom who dropped out like most teenage mom’s. I wanted to be the mom my mom never was to me. I wanted to give him the world. Come graduation, I walk across the stage and I hear my son cry, he’s a month old at this time. I was one proud mother.

Fast forward months, I met someone. He was amazing. We ended up having relations and I got pregnant again. I was 18 with a 7 month old, we didn’t know what to do. Here I was, in a situation again. I by no means had a way to take care of two young ones. We decided on adopting her out. Her father and I split during the pregnancy. But he was there at her birth and to say goodbye as she went with her new family. Hardest day of my life at that point.

During my pregnancy with her, a guy proposed to me, and I said yes. I had known him for a while… We got married 2 weeks after I gave birth to my daughter. He promised me we could get her back, because I was miserable without my daughter.

He was in the military and I took him up on that offer. Michigan has a 6 month law for a mother to reverse an adoption and get your child back. When I went to get her, her adoptive parents told me they hoped I had a child taken away from me so I know what it feels like. I didn’t take that too much to heart. But it surely stuck with me for ever. Even until this day.

Fast forward- I have an almost 2 year old, almost 1 year old… Now I am pregnant with twins!!! Wow. What a total shock. We were happy. The preganncy was kind of a struggle. Towards the end my hips would start to pop out and crack loudly with pain. Pretty much I could barely stand up or get out of bed half the time.

Fast forward to the birth – I was expecting a boy and a girl according to my ultrasound. Surprise. I had both boys. Uh oh.. I didn’t have a name picked out, I brought boy and girl outfits to bring them home in.. I was like damn, what do I do. I randomly picked a name for twin B. Malachi David. It sounded so perfect and it fit him so well. I was in love all over again with my babies. He went home in a pink flower flannel onsie.. ha! Everything was going good at home. I had 4 kids and a beautiful home on a military base…

3 months later we had a fluke snow storm in Virginia, everything got shut down. They are not used to snow. It was January 30th 2010. That day I lost my son, Malachi, to SIDS. I called 911, was on call with her for 13 minutes while preforming CPR on my son, I gave him his last breath..

They pronoucned him dead at the hospital, I held him and kissed him one last time. Immediately after, the army’s CID (criminal investigation division) asked my husband and I to come to their headquarters. We were then interrogated for 7 straight hours, where they made us sign an affadavit stating we were being accused of murder. On February 1st CPS showed up demanding to take my other three kids. We were staying at our friends as our house was on lockdown for 7 days as they investigated everything. I asked why they wanted to take my kids as we did nothing wrong. She said that the state of Virginia and the Army does not believe in SIDS, and that it is standard portocol to remove kids once a child dies. They said they were coming at me for abuse and neglect. I kissed my kids and hugged them so tightly. I did not want to let them go, infact it was very hard to do that without flipping out. They had Military Police escort them just in case of problems.

We went to court, where they bashed us and told us we murdered our son. Said we wouldn’t get our other kids back until the autopsy report came in. Until then we had supervised visits with our children as they were convinced we were bad people. 7 months, yes, 7 months later the autopsy came back as: cause of death – unknown/SIDS. I FUCKING KNEW WE DID NOTHING WRONG.

It didn’t end there. We fought for 2 1/2 years trying to get them back. Did what the court ordered us to do, then on out last court hearing, the judge gave me two choices. Either keep fighting and never see your kids again, or willingly sign your rights away and have contact with them…

I didn’t know what to do, I fought this long and didn’t want to give up. I also didn’t want to lose my kids forever. I was only 20. I didn’t know much at all about laws and my rights. I signed my rights away and that day I lost everything. My life. My children. My purpose. I made sure that a family would take all three kids as I didn’t want them separated. They agreed to those terms. I was never charged with anything. I never should have lost my kids.

Later on I found out that my son’s name translated into: my beloved messenger. That hit me hard as his name was straight from the Bible and I didn’t know.  He was my angel, he was his twins guardian, he was truly his brothers angel.

My husband and I separated. I turned to drugs, synthetic ones at that. I lost a lot of weight and was hooked for 6 months. I had then hit the lowest point in my life.

March of 2012 my kids were adopted by a very loving family who could not have kids of their own. For a while I was bitter with them. Jealous. Jealous they they got to raise my kids and I didn’t. Now, I couldn’t be more thankful they adopted my children. My children are shown nothing but love, and faith. They are into things I would have never been able to afford. I am now known as birth mom, and see them every chance they can come up to visit my family.

A little back story…

Hello, I am 28. I live in, and am from the United States. Born and raised in Michigan…burrr. 

My life, like others, has been totally chaotic. Unstable homes throughout my childhood, and always moving. I was molested as a child, that person also molested my sister. He went to prison, thankfully. My mom and dad were never together. Infact, my dad left my life at about the age of 4? The memories of my dad aren’t great. I remember way too much from my childhood. I was visiting him before he walked out on me, he had a girlfriend, and she had kids my age or slightly older. She did not like me, at all. She chased me around the house with a butcher knife. Not kidding. I ran and hid in her kids’ closet, with them. After that, I did not see him again. 

I have very little good memories of my childhood. My mom was no longer able to care for me after 4th grade, so I moved into my grandparents house. I was thankful, but, also resentful. Resentful for the fact that I felt abandoned by my mom. My grandparents were very loving, always making sure I had what I needed. I started school in a new community. It was a rich area. 

School was very much a struggle for me. I was behind on reading, and math. I did not make friends very easily as the kids there had parents who were rich and they all had huge egos. There were times where I would come home crying. I was put into special classes to help me catch up on what I was behind on. People in those classes were classified as retarded or special which made me an easy target. I began rebelling and shutting down. Got suspended a lot for acting out. Started to have panic attacks. Went to therapy, but I never fully disclosed my problems to my therapist. I surely didn’t know why I was acting out at that point in life…

Fast forward to me being 16… My grandparents couldn’t handle me anymore. In which now in life I understand why.. My mom got custody of me again. I was excited. I was about to be a senior when she got me. I enrolled into a new school. Small town community. I thought this was a new beginning…

I was raped at 16. I never told anyone because I felt no one would believe me, and, I surely wanted to just forget about what had happened. I ended up finding out I got pregnant because I got extremely nauseous when my mom made food. Then is when it all came out. I filed a police report, but could never face him in court. So nothing ever came about that incident. Other than some of my family not believing what I said had happened. That hurt. A lot. I was then left with a decision; do I keep the baby, or what do I do?!

Continued on next blog..