The Road is bumpy, Real bumpy!!

Whew!!! Its been awhile I know. So much has been happening in my little world and although writing is such a great outlet for me sometimes life is so overwhelming that writing is the last thing that I can do. Sometimes you have to just retreat into your safe place and regroup, that is where I have been, in my safe place trying to regroup. Some of that has been successful some of it not so much.  Right now I am at a place in my journey where I am seriously asking “What could I have done to deserve all this?  What now, what do I do? Where do I turn? How will I be able to get through this?” I am only one person and everyone has a breaking point.

Life has thrown me yet another curve ball. At every turn just when I think there isn’t anything else I can handle there it is right on my lap. On February 27th I was diagnosed with Rheumatoid Arthritis. At first it was just a few days of shock and maybe even some relief because at least now I had an answer to the extreme pain, stiffness, and swelling that had started to occur. I had sudden onset and when it came on it hit with a bang. I went to bed one night and felt ok and when I woke up the next morning my left wrist, hand, and fingers were swollen, tight and extremely painful to use. I initially thought I had slept on my arm wrong and a previous shoulder injury possibly had aggravated it. The next morning I woke up and the exact thing was happening to my right wrist, hand, and fingers. After about 4-5 days of trying to navigate through and live with that pain it began to subside. Within a week of those symptoms I woke up one morning and my right shoulder was in severe pain. I couldn’t raise my arm, I couldn’t use it hardly at all. Within hours my left shoulder begin to feel the same way. For almost a week I was unable to use either of my arms from my shoulder down to the tips of my fingers. This was a pain I had never experienced. I will remind you I am no stranger to pain in my life. My life has been rooted in pain from before I could ever even remember. My body has been through more things than most people can’t even imagine, but this pain, yeah this pain is a beast. I have never been faced with a pain I can’t push through. I have always been able to focus and push through the pain to do what I need to do and get things done but this mess just locks me down.

When I went to my doctor on the 27th I had a suspicion that this may be what was happening but I was definitely praying against it. After a thorough exam, review of symptoms, and family history she was pretty sure about the diagnosis but as I found out there isn’t one definitive test that can be done. Diagnosis is made through a combination of things. I was sent to the lab to have some blood work…..and then you wait…. Three days later I received the results and they were not good.  The three main test that the doctor was concerned about was the RF factor test, the A-CCP test, and the ANA test. All three were positive. Positive reading for RF factor would be <14, Mine was 252. Positive reading for the A-CCP would be Strong positive >59, Mine was >250. Positive reading for ANA, it came back with a positive IFA with a speckled pattern which is associated with mixed connective tissue disease. My mind was reeling. With everything combined I now have a definitive diagnosis of Rheumatoid arthritis and it was bad, I am confirmed seropositive and the disease is progressive and very aggressive. It was coming on hard and fast.

I am 35 years old, I am already an amputee that deals with severe nerve damage, neuropathy pain, degenerative disc disease, and now this potentially debilitating disease where my own immune system attacks my joints. I think this is it. This may very well be my breaking point. This last month I have spent many days in bed, hurting so bad unable to move much. I need my hands, my arms to transfer my self from one place to my chair, and then I need my hands to push my wheels. A lot of days I am just left feeling helpless and hopeless asking myself and God if I am being completely honest Why, Why God are you giving me another thing to carry. I have stayed quiet telling very few and trying still to just process what this means for me now, what it means for my family. Waiting for dawn and what each new day will bring sometimes with a fear in my heart that each time I wake up it will be with an immobilizing pain and I will once again be frozen in time as everyone else continues on with life around them.

The one thing I can say about this new phase of my journey is that it has probably saved my marriage. Brian and I have been in such a vulnerable place. For so long we have been going in opposite directions. Love was not the problem, we have plenty of love but we all know that marriage takes more than love. This has all reminded me of my safe place, my soft place to fall and that is with Brian. Neither of us is perfect and man do we have work to do, but I am so grateful for this Godly man that has stuck by me through every bad thing that has occurred in my life since I have met him. All of our problems have not disappeared however right now we are focused on some of the bigger things occurring and our children. Our children need us to give them some of our time and energy.

I know I will prevail and I am so appreciative of the few of you that have known and been there to love and support me  and for those that are just now finding out I pray that you will offer your love and support and will understand if I am just not able to physically keep up with the physical demands that most of you are able to operate at with ease on a daily bases. I will always do my best and try at being better at asking for help when I need it. I love you all, thank you for taking this journey with me. You all are my motivation.

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Whose Life Matters!!

We all matter. God decided that. YOU don’t get to determine that. My friends don’t determine that, my children don’t determine that. God sent his only son, Jesus Christ to die on the cross for my sins, for all of our sins, and that is what determined that WE MATTER!!!! The Police should not get to decide that. For as long as I have known it however, there as been a consensus by most of society that black lives don’t matter as much as others. Actually let me rephrase that sentence, lives of color in general don’t seem to matter as much. Most white people don’t know the differences in the Latino communities, I will be honest I don’t. How about the Indian community, Hindu, East Indian? What about the Arabic cultures, they are all taliban right? Since the beginning of time people of color have been treated less than.

Do my sons deserve to walk down the street without fear of being stopped by the police? They deserve it but they don’t have it. My 10-year-old son is literally the size of the average grown man. He is 5’3 165 lbs, and guess what, like most 10-year-old boys he likes to play with toy guns and when he is with his cousins, my nephews he even plays with their BB guns/pellet guns. What is to keep someone from calling the police on my son and what is to keep him from being the next Tamir Rice? #BLACKLIVESMATTER

 So what about Briana, everyone that reads this probably knows my incredible 14-year-old daughter. She probably babysits for you or maybe she is with your child in Life Kids, maybe you have heard about her from someone else or maybe you simply had her in class. Regardless how you have come to know her you know that she is the sweetest, most loving, respectful, helpful teenage girl you will probably ever meet. She is the girl you want your daughter to be friends with, the girl you want your son to date, but guess what that police man who sees those rowdy teenage kids on the corner doesn’t know any of that about her. All he knows is that in a community full of predominately upper middle class white kids she is the black girl in the group and often times more than not she is going to be the one that they decided to question. What is to keep her from being next? #BLACKLIVESMATTER

Meet my husband Brian, the first thing that everyone that meets him says about him is that his smile fills the room. He is truly a huge teddy bear. He loves with all that he is. He has a laugh that can be heard from miles away. Once you meet him you never forget him because he has a God filled spirit that is one of the most beautiful spirits I have ever experienced. My husband doesn’t just always drive the speed limit but he drives under it, just in case. Any time there is an issue or a complaint to be made at an establishment he stands particularly farther back than necessary just in case. In a discussion in public that might become heated he always stands with his hands folded in front of him just in case even when he isn’t involved in the discussion. My husband is also 6’5 300 lbs and as per previous situation’s resulted in the police killing Eric Garner apparently his size alone makes him a deadly threat regardless if he has an actual weapon or not. What is to keep him from being next? #BLACKLIVESMATTER

If at anytime you have thought to yourself it is not just black lives that matter but all lives that matter, I will say this to you, as I stated above yes we all matter God made that decision; however it’s not killing season on your children, your husbands, your family. This doesn’t just affect my direct house hold. I have  2 Brother and sisters in law, 5 nephews 1 niece and countless cousins that are black and any one of the above situations could be them as well.  

As I have sat and wrote this 11 police officers, 4 of which have lost their lives in Dallas tonight. That broke my heart even more than it is already broken. I can promise you this, The families of Alton Sterling and Philando Castile did not want this. The killing of police officers goes against the very change that we all want. The movement #BLACKLIVESMATTER isn’t saying that no other lives matter, it is saying we matter to, stop devaluing us so much that you will shoot us down in the street unarmed in front of our wives, husband and children. It is saying we matter as much as our white counter part. So killing police officers goes against those direct message’s because  guess what there are black men and women on the police force and before they are cops they are black and their lives matter black and blue!

I want to end this by saying this, if you in any way think that this isn’t a race issue or that this issue doesn’t exist I ask that you kindly exit my life. I don’t want you here in our good times and should any of the unthinkable from the above happen I do not want you in my face being fake acting like you support me or my family in our darkness. I do not expect anyone who does not live with this reality to ever really understand, but what I do expect is that if you choose to stay in our life and be apart of our family is for you to acknowledge that this is a reality regardless if you  get it or not. We ask for your support and most of all if you spend time with our children without us please educate yourselves on how you should handle any situations that may arise involving our children regarding these types of  situations.  

Tonight I pray for the fallen police officers and their families. For the righteous officers across our country that go out on our streets to honorably protect us. For the families of Alton and Philando and all those that were senselessly murdered before them.  For the African-American Community that needs protection more than ever, they need healing and peace. Most of all I pray for the calm and peace that can only come from our heavenly father, our nation is in great need of you right now.

THE 5 BLACK LIVES IN MY LIFE MATTER

WE NEED TO DO BETTER

 

 

 

 

Just One Second, This Second

I have felt this grief before, I have felt this deep longing this deep deep ache that seeps down all the way to the pit of my soul. So deep that I can’t catch my breath. I literally can not take a breath in that moment. I felt it the moment my mom took her last breath. I walked out into her front yard and with my friend in front of my and my husband behind me, I exhaled. I released the pain that was anchoring me in that moment. In that moment I wanted nothing more than to have my mama back but I knew nothing on earth would change the fact that mere moments before I had laid next to her, held her in my arms as she walked in the arms of Jesus.

The next time I felt that grief was the moment I woke up from my 8th surgery. The surgery that I knew before I laid on that gurney would be the one that would take my foot. The nurses said my body was racked with sobs before I was even fully conscious. Just like the night in my mama’s front yard, there was that pain that had become so familiar, that ache that had made its home deep in my soul. I wanted more than anything to have my foot back but I knew nothing on earth would change that mere moments before I was a whole person and in that moment I laid in that bed less. No longer 2 feet but 1.

In that moment it was just one second at a time, that second.  4 days later I would have a revision to form my stump so I would lose even more of my leg, but it didn’t matter because nothing would hurt more than the moment I woke up from that 8th surgery and couldn’t take that breath. It’s been almost 10 years since my mom died and I still get those moments of deep grief where just for a moment, that one moment I want more than anything to have my mom back. I can’t catch my breath but I tell myself “just one second, this second.”

The last few days I have been having those moments. No matter what I do, no matter how bad I want it, I will never be able to grow a new leg. There is no hope for a cure when you are an amputee. On days like today when all I wanted to do was get up and walk around the church with my husband. I wanted to stand in front of the church back drop and take a picture. I don’t want to live another day in this chair. I look down at my one foot of painted toes and just want so badly, Father God please I just want my foot back. Yet I know that will never happen. And there it is, I can’t breathe, but just one second, this second is all I have to do.

If only people could understand that having and wearing a prosthetic isn’t that easy. If only it was as simple as some think and make it out to be, it’s an ok second choice if I could get into one that I can actually wear. Having one and not being able to use it is like a constant reminder that just out of my reach is freedom that I can’t have. But just breathe, one second, this second.

These collection of seconds are what get me through each day. The days when I just want to pull the blankets over my head and cry. Days like today, but I try to remind myself that everyone has something they struggle with and although it may be different for them it is just as serious to them as my amputation is to me. So I pray that their seconds help them get through their days a little easier. They being whoever is in my life dealing with something.

I miss things, I miss going on water slides, and wearing jeans. I miss doing things without having to worry about handicap accessibility. I miss walking beside my husband instead of always having him behind me pushing me.  I miss just feeling “normal.” I pray that my collection of seconds become less about that deep pain that takes my breath and becomes more about living life and capturing memories. I am tired of sitting on the sidelines, of letting that breath seizing, time stopping, soul pounding grief hold me back, I want to fully step in2 my destiny.

Drowning in a Sea of Pain

   How can I be invisible in a world of billions of people. How can I hurt so bad that tears become a permanent path down my face. I become afraid to share the depths of my pain because of what others might think and I don’t want to lose what is important in my life and the few things that I look forward to, the only few things that keep me breathing every day. Others look at me and say how strong I am and how they couldn’t get through the things I have with a smile on their face but they don’t know that the smile is just to hide the pain and keep the tears from spilling onto my cheeks once again.

   Everyday is like groundhog day. How many times do I think to myself there has to be more to life than this. My kids go through each day with the same routine asking the same questions and I give the same answers, praying with every breath that their life will contain more for them then what I have managed for myself. It’s not that I have a horrible life, and it’s not that I am ungrateful for the blessings that God has given me. You have to understand the history of my life and that it never seems to end. What is “it” you might ask?  Well “It” is all the crap that keeps getting dumped on me. It never ends and it can’t ever be little stuff, no it is bad stuff and it just piles up and piles up and over time I have just broken. And at this time, right now in my life you find me completely BROKEN!!!broken

   The question becomes can you meet me where I am right here on my knees completely broken. Not knowing which way is up. Trying to work through, heal, forgive, and ask for forgiveness of 34 years of pain, anger and destruction. I have to figure this out because if I don’t the outcome is detrimental. I know that losing my leg plays a big part in this because the day that happened it changed who I was, it changed my purpose. Everything that I was, did and took care of shifted. I was not longer able to do things that I had done my whole life. I had to depend on someone and that was brand new to me. I just don’t know who I am anymore.

   I know that everyone has something and I also know that some people even have things that are worse than mine but the only thing I know what to do is deal with my own life. I don’t know how to heal. I know I am burnt out on life. I know I look in the mirror and I am disgusted with what looks back at me. My kids and husband are getting the worst of me instead of the best of me. Instead of normal life issues being dealt with and handled they are just piled on top everything else. Our life feels like it is in constant crisis.

I pray whoever reads this if they relate they just know they are not alone. I pray you know that one breath, one second, this second is all you have to do. I know that things pass and that most of the time things have a way of working themselves out. I encourage you to reach out to a friend, your pastor, a friend from church, school or even me. YOU DON’T HAVE TO SUFFER ALONE. I know that God loves me and that all I need is faith of a Mustard seed. I know that if I will just hold on the sun will rise again. I pray that every day I get better at living without a leg and that when I look in the mirror I see someone worth loving and saving but I know that is a work in progress.leg   I know I have a choice and I have to choose life. I have 4 children depending on me to choose to overcome. I know that right now I may not be something they are very proud of but when all is said and done I pray they are able to look back and say that they are proud. I hope with all that I am down to the bottom of my soul that they when they are adults raising their own children that they look at me and say “mom thank you for all that you sacrificed for me.” I hope my daughters look at me and see an overcomer, a woman who worked her way from the bottom and never ever gave up. I want to work everyday to step in2 my Lyfe, so that they can learn to step into theirs. overcomer

 

 

Reeling with Raynauds

    If you have never had children then the agony I am about to describe when you see your child go through physical pain won’t make sense. There is a fear that hits your brain, hits your soul when one of your children comes against something, that they much less you has no control over. Most mothers from the moment we find out we are pregnant change our whole lives to protect and give our children the best and healthiest life possible. With 4 children I knew that my chances of having all of my kids healthy was probably slim to none especially considering the fact that one by one I went into premature labor with each one. They all were born early and up until our 3rd child they were healthy. Brayden was born 5 weeks premature and he was in the NICU for 7 days and has had asthma and allergy issues ever since, but our first-born she was healthy from day one. With the exception of a few ear infections as a baby she has always been happy and healthy so when she started having some discoloration and temperature issues in her extremities we didn’t immediately jump to any conclusions or freak out right away.

    Time stands still when you hear words like disease, cancer, no cure, manage the symptoms. The day of her doctor’s appointment we heard words that made time stand still. We heard ” Briana you have Raynauds Disease, there is no cure, but there are things you can do to manage the symptoms. Everyone is different so we aren’t exactly what sure what symptoms you will even have.” My daughter and I got through that exact moment by telling each other that it could be worse, it could have been cancer. She could be loosing a limb like I did, she could be dying. There were so many worse things the doctor could have come in and said, but in my head I was screaming all those things don’t matter this is my baby. I was devastated.

    See this child at her mere 14 years at age had already been through so much. She had to experience the death of 3 of her grandparents, 1 of which was my mom whom she was extremely close to. Then at 10 she began the task of caring for her 3 younger siblings because I had decided to have reconstructive surgery on my foot that ended up being 7 surgeries 20+ skin grafts, 2 external fixators. And in the end after 2 years of all that I ended up having to have that foot amputated. Our youngest daughter who was 7 months old when I had my first surgery called Briana mama first and for good reason, Briana had been taking care of her the way a mama would. She has been my right hand man as they say. I couldn’t have gotten through all of these obstacles without her help and she has done all of that while maintaining fantastic grades, and extracurricular activities. I could not wrap my mind around the fact that on top of all the things she had willingly took on to be a help and blessing to others and now she was facing this disease .

    We are in the beginning stages of this disease and already it is proving to be an ugly opponent. As a parent it is beyond frustrating when you see your child cry out in pain and there is nothing you can physically do to relieve the pain. Briana is a tough girl and usually can deal with any pain but she has met her match with this disease. There are days, days much like today where the only thing I can do is hit my knees and cry out to God on her behalf. I beg him for mercy and relief for her. I beg him to please deliver her from this disease. I beg him to please ease her fear and uncertainty and to help me be the best mom for her I can be.

bri foot.png

    When your child is hurting you feel it to. Its like you’re connected. There are times when we may be able to do something to help ease whatever they may be feeling and those times are great gifts. However, there are more times when there isn’t anything we can do and it feels like pure torture. As I watch my daughter, she moves around and I offer to rub her feet because they are cramping so bad she can’t walk, my heart is breaking. I would give my other leg if only she didn’t have to go through this. I know I can’t take this from her or go through it for her so I just pray that God will use it in her life and she will be stronger, wiser and a warrior for his kingdom. We will continue on this journey and learn more about Raynauds. My Daughter will become a voice for this disease and she will conquer it. I will turn my frustration, fear, and anxiety for my child into drive to maker her life the best I can. In the meantime as she begins to step in 2 her lyfe I will just sit back watch and admire and be inspired by the incredible young lady God has created in spite of the obstacles before her .