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.

The Skin We’re In

My husband, My Children,  My Brothers in law, My sisters in law, my nephews, my nieces, aunts, uncles, countless cousins, and many friends. AT ANYTIME ANY ONE OF THOSE PEOPLE LAYING DEAD IN THE STREET COULD BE SOMEONE I LOVE DEARLY AND DEEPLY AND FOR WHAT?? ALL FOR THE SKIN THEY’RE IN

We all wear this skin differently that is very clear. I wear my white skin very differently than most of my white counterparts. Even those that have their minds, eyes, hearts and ears, wide open to the dire problem in this country right now. I most defiantly wear it differently than those walking around with white blindfolds on. Eyes wide closed as I like to say. Even though I am very much aware, in tune and stand firm and with eyes wide open to the lives being taken at more than alarming rates in the streets of America I still have no idea what it must feel like to wear the black skin their in.

It’s not about skin color I hear over and over and over and maybe in some cases it’s not. Not maybe, I know in some cases there have been some amazing officers that have had to use lethal force in order to save their own life or the life of someone else. Here is where the water gets very muddy, even those good, honorable, incredible officers lose credibility when the cases of clear cut murder are going unprosecuted. I know so many people are going to hate these words and that’s ok because I am not here for a popularity contest, I am here to speak some truth. Good officers don’t deserve to have our backs turned on them, but black men don’t deserve to die on the streets for being black. The African American community doesn’t deserve to live in fear. THEY LIVE IN FEAR!!!!!

This blog today is about starting conversations. Starting a challenge that people would start asking questions. Most people don’t know how to help especially if this is not a world that you live in. Well here is where you start. Have a conversation with you children about injustice, about racism and the fact that it very much still exist today. Don’t turn a blind eye or ear just because it makes you uncomfortable, I promise you nothing is more uncomfortable than picking out caskets. Fear is what got us here so just jump and start the conversation. I beg and plead with you please stop turning a blind eye and pretending it does not happen and that the victims are the ones to blame because, while I am sure there is plenty of blame to go around there is only one person laying on the ground in a pool of blood. Officers are trained to work in high pressure situations. They are supposed to be trained to use their weapons. This is their job. There are thousands of officers that go out every single day and do not kill a single person, not one person. There are officers that go their entire career and never even fire their weapons, so why? These questions can’t just be left hanging in the air they need to be answered.

As I laid in bed with my husband last night and talked with him about the fear he feels when he leaves home every day I was overcome with a sadness that threatened to suffocate me. We talked about all the things he thinks about that could put him in contact with police and what he does to avoid that and I became disgusted, what country do we live in right now? I prayed God please don’t let my husbands car break down, don’t let him ever need assistance from the police for ANY reason because he is 6’5, 330 lbs. and I could not survive picking out a casket for him. We talked about the conversations we have had to  have with our children and will continue to have with them. As I drifted off to sleep with tears sliding down my face, I prayed for The family of Terrence Crutcher and like so many nights before with the names of so many people slain in the streets of the “Greatest Country on Earth” and I begged God that the next one wouldn’t be someone I love. Please God our nation needs you and only you can make this stop.

Go in peace and love, have conversations. Take it all to the Cross!!!

Phantom: Yet Real As Ever

Invisibility isn’t a real super power, right? Well guess what I have it. I have an invisible limb and I still feel everything about it. The only difference with it is that I can’t use it. Most day I feel like I am going out of my mind because I feel things with my left foot and the stupid thing isn’t even there anymore. I truly believed that as the days went by the feelings and pains would get less and less but they haven’t. They are just as strong today as the day they cut my foot off.

I have been told that because the injury to my foot occurred 32 years before my amputation and I had suffered with the damage and pain all those years that I would probably always suffer with pain and discomfort from the severe nerve damage even thought my foot and lower leg were no longer there.

March 24th 2014, the day of my first surgery for the amputation I expected to have some phantom pain afterwards. I was warned, my foot would itch, it would hurt, I would feel things on it even though it was no longer there. The physical therapist taught me that in order to move specific muscles I would just move those same muscles in my mind. so for example in order to still flex my calf muscle I would need to still need to flex my foot in my mind of course because there is no actual foot to flex. All of this takes so much more work then you actually realize because when you have all of your limbs etc. these things come natural. You have muscle memory so most things are done without thought at all. How does one convince your own mind to pretend the limb is there in order to move muscles you need to yet then remind your mind that it is gone so that you hopefully, possibly will have some relief from the crazy feelings and pains that plague you from a part of your body that doesn’t even exist anymore.  

From the 24th to the 28th I was mostly numb because the surgery was done in 2 parts. So I can say I was slowly released into the phantom world but it didn’t matter because the twitches, the burning, the cramping, the full on pain hit and hit hard and has not let up since. I don’t even know how to explain what it feels like to constantly hurt in a part of your body that isn’t even there anymore. Sometimes I truly feel like I am going to go crazy. The muscle spasms can be the worse because when you get a spasm in your calf muscle and you can’t really flex your calf to work out the spasm can feel like torture. It really does work at your mind.

I think after two years I am just trying to learn to block out the pain. Remind myself that the foot is gone therefore the pain can’t be real, remind myself that it is ok to feel what I am feeling and that the pain will pass. Most of all I am just trying to be patient with myself. I am just trying to enjoy my superpower of invisibility and try to find a cool way to use it to help me to Step in2 my lyfe.