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.

May I fall apart now, Sir?

Life happens sometimes to fast and to often. We get going at a speed often thinking we are comfortable and able to handle all that is coming at us, putting things in their proper places or on their proper shelves and I don’t mean physical things I am talking all the mental.

Recently my family went through one of the hardest things I think I have ever went through. I was faced with holding my family together during a time when I didn’t even want to hold myself together much less anyone else. It’s something I have always know about myself, the ability to find strength and push through even the hardest of situations. It is how I was able to lay my mom to rest for the most part by myself, at the age of 25, and it is how I was able this time to rise up and care for myself, my home, and children after my husband attempted suicide on August 11th 2016.

I have known about this demon my husband battles since the moment I fell in love with him 15 years ago and it is something I chose for better or worse when I said I do 13 years ago this November. Mental illness is no stranger to me, it is something that has plagued people I love for as long as I can remember, many of them trying to combat and fight it only to find themselves slaves to another demon altogether, addiction. There is a pride that comes with seeing how hard my husband has fought all these years; because this disease has tried to take his life on more than one occasion. Yet on this night, one action, one thought, everything changed with just one decision.

We don’t have much support or guidance in way of parents, a lot of his pain comes by way of saying goodbye to his mother and father just 3 years apart beginning in 2008. When you lose the two people that are responsible for putting your fleshly body here on this earth it can do something to a man’s heart and way of thinking. Well in complete honesty we don’t have much support at all. You truly find out who your real friends are when your husband is in a lock down unit for 6 days in the hospital. When you are left with handling everything from taxiing the children, to school supply shopping, not to mention the practices and school functions. The beautiful thing about it all is that you also find out you had friends in the most unlikely places and sometimes that is how God loves on us. He uses these heartbreaking times to build a new friendship or build a bridge between a strained relationship. However, with every good side there is a bad side and you also see who isn’t your true friend.

I know that most people in general just don’t know what to do when someone is in crisis so the go to statement is “please let me know if you need anything.” I learned sadly from experience that when you are in crisis you more often than not don’t know what you need so you can’t tell people how to help you so you just go about doing the next thing. In the 7 days after my mom died and in the 6 months after her death I would have loved to have been able to tell people what I needed, but I did not know so how could I tell anyone. In the 6 days after my husband tried to kill himself I would have loved to tell someone what to do to help me with my 4 kids, but I was in autopilot. I was just doing the next thing. What I am recognizing now is that people know how to rally around him because it is easier to identify how to help and support him. I am the strong one keeping it all together and holding it down. I didn’t know and don’t know how to really ask for help or what to even ask for so no one really helps or even just stops by to be my friend, but they know how to help him. There has even been a few situations where I have suffered some negative consequences for his actions. I feel like I have been failed by those that should have showed up the most. My wall is up, I am shutting down and that is why I am able to survive.

The truth is this, I don’t ask for help because I am a fighter and survivor. I have fought my way through life since that fateful day in May 1982 when I was ran over and began to fight for my life. I fought through my parents drug addiction, through a bad childhood riddled with poverty and abuse, I have fought and survived my own physical aliments and obstacles and endless surgery’s only to come out the other side an amputee and will continue to fight every day the rest of my life for things that most people with take for granted. I am a survivor and a fighter and us survivors don’t know how to ask for help or what to even ask for, we just do the next thing.

It is only now that Brian is home and that we are in the rebuilding phase working on putting our family back together and healing from this life altering experience that I start to fray. It is only now that I start to look at doing a few things for myself and work on some serious healing in our marriage that I look to the heavens and I fall to my knees and I ask my heavenly father is it now? Is the time now?

Because when you have four children and a husband with a fragile heart and soul. When you have no mom to call upon and no soft spot to fall, when you know that you are the survivor and always the fighter and everyone looks to you for strength, it’s up to you to know the right time to look to your savior and ask……

May I fall apart now, Sir?