Hey out there, it’s been awhile since I have shared and my life has taken yet another turn and delt me yet another blow. Yet I am feeling an overwhelming sense of inspiration so I don’t want to let the moment pass. I think there is something in every day that touches me, maybe brings tears to my eyes, forms a lump in my throat, has me contemplating my life. More and more I am reminded how very short life is, how very precious every breath we take is, especially considering my latest diagnosis. I want to impact the world, leave a mark, a legacy where I once was when I am gone. I am working hard to find joy in the smallest things and trying so hard to not let the small things get me down.
I went to the zoo with my children today splurged and rented an electric scooter. Man did that make the day so much more enjoyable for the kids and myself. They didn’t exhaust themselves pushing my chair and I felt good having independence and doing things for myself. Both of my nephews graduate this month and I will scream from the rooftops I am the proudest auntie around. One is going off the the Army to be a ranger and the other is going off to play college football but you know what they could stay home and go to the local community college and I would still be proud. I just want them to be happy, get an education and build a good life. Everyday may not be Disney land and cotton candy but I’m trying. I am thankful I get to be so present in my children’s day to day life. I get to stay home and be available if they need or want me for something. Which leads me to discuss my recent diagnosis.
When I spoke earlier about being diagnosed with RA I was also diagnosed with Lupus. At this point I have been on my new medication for 2 months. I have noticed that it is helping some. The flare ups aren’t 100% gone but they are happening less frequently, not lasting as long and they aren’t as intense but I have had flare ups start in new areas. In total the areas affected are both wrist, my fingers, the palm on the right hand, my left shoulder, my knees, lower back and my ankle. I have had a malar Lupus rash for about 4 months and the RA and Lupus together have destroyed my immune system so bad that I constantly have a respiratory issue that I can’t seem to get over. At my last appt a few days ago I got a steroid shot and a NSAID shot to try and help boost my system and help maybe get me through this crud.
Most days are a struggle, most days I’m in my bed and that can work on a person’s mind. God has blessed me greatly though. I have such a good husband, our marriage has seen some hard days but he loves me and he does so much to give me the best quality of life possible. I have 4 of the most extrordinary children ever created on this earth. I could not get through each day without them. They each bring individual qualities that keep me holding on everyday. One thing I am eternally grateful for is that already Briana is blooming into the best friend I could ever have. I still have to be her mom right now but I know what our relationship is evolving to be.
So right now I try to just find the joy in each day because tomorrow is not promised. I get lost in my children’s eyes and look at the world from their view. My husbands laugh brings me instant and pure excitement and I feel safest when I’m with him.
Right now when the world is in a state of chaos and it’s being ran by a man with no direction or purpose find your sweet spot and put your faith and trust in God he already knows what tomorrow holds. See the sunrises and sunsets because who knows how many more there will be, it’s God’s best masterpiece. Live for today because tomorrow may not come. Lastly hug often, human touch is the easiest way to show someone they are not alone and it does not cost a thing. Compassion is free!!!
Blessings from me!!!!
My heart is heavy, I feel so full of words that I just can’t seem to get out. My emotions are trapped. When I write I always want it to benefit others, it’s not just for my benefit.
I feel like my world is crashing down. So much is happening around me. The world is buzzing and I am litteraly standing still, frozen in time, or so it seems. STUCK, STUCK, STUCK!!!! That is the only word that comes to my mind.
My peace has been interrupted, my emotional balance thrown off and I am completely unsettled. I don’t need much in life. I am pretty low maintenance, but what is missing right now only I can fix. If only I could figure out what it is.
As a woman I am powerful, I have insight and intuition that is unmatched. I am able to handle and have handle things that would bring 10 grown men to their knees, but when it comes to emotions it’s fair game for all.
As you read through this know your not alone, when you look around and feel like no one could possibly know or relate to what is in your heart know I see you. I cry with you, I pray with and for you, I am the woman standing behind you cheering you on when you feel you can’t go one more second.
You are surrounded by woman that need to hear your story to be brave enough to tell their story. Stand up and be the change you want to see. The first step starts with us.
You are all the world needs in all of your beautiful, divine, Gracious imperfections. You are fearfully and wonderfully made. You are all I need. You are my motivation. Let your voice be heard.
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.
Man marriage is hard work!! Why couldn’t someone tell us how hard this was going to be, or the work it was going to take. I never thought that even after 16 years we could still have so many struggles.
I never knew that becoming a mother would change me so much and that I would lose so much of myself. How many mothers out there know exactly what I am talking about? You forget who you are, maybe even your purpose. The person you were before kids came along and everything you have, every ounce of energy you have goes to them.
Most marriages have a hard time surviving tragedy, heartbreak, grief, loss, and the many other things that life can throw your way. Couples shutdown, stop communicating, grow apart, lean on someone else, and turn away from the one person they should be turning to. I think this is one of the biggest reason Brian and I have been able to succeed to this point. The things that tear most couples apart bring us closers together. Brian is who I look for in times of tragedy and heartache. When something happens and I want to shrink back the only thing I want to do is close out the world and surround myself with Brian and my kids. Brian has been by my side through the hardest thing I have gone through to date, the death of my mom 10 years ago. We then had to go through the death of both of his parents. We have lost a baby, aunts, grandparents, cousins, and friends. Through it all we draw closers together, drawing strength from each other.
Since losing my leg I have become a completely different woman. If you think having kids changes you, try cutting off one of your limbs, that really messes with your mind. I am no longer an active participant in my own life. I pretty much just exist and watch life happen around me periodically jumping in to take part in an activity or event usually involving my children. I am stuck and this feels almost impossible for me so I just can’t imagine how helpless Brian feels. However, he is so supportive, he listens, he is affectionate, he doesn’t push or pressure me and more than that he doesn’t make me feel bad for how I am feeling. Neither of us are perfect but our life experiences have given us a little hand up.
I believe the key is to never give up. Love is a choice. I don’t think a lot of people understand that. You always hear statements such as “I’m not in love anymore” or “they don’t do it for me anymore.” Commitment is about choosing to love even when our spouses are doing things that aren’t so lovable. Choosing to love even when all we want to do is run. You can “fall” in and out of love a million times in the course of a relationship, but loving someone, the true foundation of love goes way deeper than the flighting feeling of being “in love.”
We make it work by never giving up. Never succumbing to the pressure and feelings that leaving would be easier. We aren’t perfect, most days are a struggle and believe me the struggle is real.
One day though we will look back and we will see the beautiful legacy we created because: “What therefore God has joined together, let no man separate.” Mark 10:9 ESV
These days I have kept my circle pretty tight. the people involved in that circle I thought I knew fairly well and I would have sworn knew me even better because I am a wide open book. The things that are important to me have always been important to me and the only thing that changes about that is sometimes I might add items or people to that list. I have always loved with all that I have and from the bottom of my heart, loyalty and trust being the two biggest qualities I look for in a friendship. They are also the two biggest qualities I give when that connection is made. It takes a lot for me to turn my back on someone I love because of the value I place on loyalty so that comes as a double edged sword. I usually get my heart broken a few times before I learn my lesson and finally let go.
With all that is going on in our country today, in society I am seeing sides of people that I didn’t know existed and some people have said the same of me. What I find curious about that statement where I am concerned is I have always been a “what you see is what you get” kind of girl. So I wanted to clear up any confusion there may be where I am concerned. I have always fought for injustice especially in terms of race, gender, nationality, and religion. Equality should be a given in the most free country in the world. I have a hard time understanding why everyone wouldn’t want that.
I don’t think I have ever been the kind of person to just randomly go around and shove my beliefs in anyone’s face however anytime something in society happens that could possibly affect my family I will always speak out, anytime something happens in society that could possibly threaten my family or someone I love or care about, I will always speak out, and anytime I see people that have claimed to love me or my family say and/or post things that go against or are directly opposite of the fundamentals that my family is built on I will always speak out. I will also ALWAYS speak out against anything that is against Equality in this country.
With all of that being said I do not believe that everyone has to have the same beliefs as I do. I don’t even believe my friends and family have to agree with me but what I do expect is that they try and understand. They try and be supportive and mostly that you not look in my eyes, sit at my table and then say things or make post on social media that the things that do directly affect my family don’t exist, are made up or we should just get over.
This is who I am, this is who I have always been and who I will always be. If this is not someone you would like in your life that is perfectly ok and I take no offense.
If anyone is unclear about where I stand on any topic please ask. Better yet feel free to read further in my blog. Yes it’s 2016, sadly this country is still so very far from being an equal and fair country. I will fight for you as hard as I fight for mine. Go in peace light and love, but most of all go in Equality!!!