I can see the light! For the past few days it has been so dark, so dark, I couldn’t move, it was as if the darkness paralyzed me. I am so thankful for a God that never moves, for a God that will keep trying to reach you. While I couldn’t hear Him, couldn’t see what I know, He used other people to constantly reach out, to help in ways I never knew I needed till it was here on my doorstep. He was constantly trying to get me out of the dark, and while I am not where I need to be, I am moving in the right direction where I can see light again.
My visit wasn’t what I planned, lately nothing is going to how I planned, and maybe part of me needs to realize that I am not driving this ship and just go. He wanted to admitted me, but I used that I have my boys and Brad in the car as a way to try and push it off. I am holding about 50 pounds of fluid, and not sleeping too good because when I lay flat it feels like I am drowning and cant breath. I am exhausted because my heart is working overtime because of the extra fluid and the lower function from Amyloidosis. So we made a compromise reluctantly from him, that I would double the water pills, and add a booster to them, and if I am not down 30 pounds by Monday then I will agree to be admitted. (They seem to be working today, I don’t see me leaving the house). I was also to get a portable EKG machine and send him my readings, so he can monitor my heart. He talked about an adjustable bed because he said when I lay flat the fluid is just building up in the heart, making the heart work harder. Lastly a 1500 maximum of sodium each day, I am to take care of my heart, and do everything I can to help the function of it. With Amyloidosis and my left ventricle thinking I need to do all I can to help my heart and remember that I can not do the things that I once did. My legs are swollen and fluid filled, so the feeling and strength is less then it was, some of that once the fluid is gone will be better, but the reality is there was progression of the disease. He is hopefully that its been a year in September on the Tafamidis that the gene will stabilize and I can sit here for a bit. We will retest in 3 months (sooner if need to with the fluid)
I left mad, I don’t know what I expected to hear, i just know I was mad. All the way home, I to be honest yelled at God that I couldn’t walk this walk, it was too much for me, that I was done. Brad has been working everyday open to close and is exhausted, then had to drive me to 6 hours and wait in the car for an hour, he looked so tired and I felt like a burden. We had friends who offered, but because Brad is Brad he wanted to be there in case they kept me.
I woke up yesterday and couldn’t stop crying, but not the sad crying, the angry crying, crying because I felt horrible, crying because I felt like such a burden to Brad, the boys who since Brad is always working are taking on this responsibility that they have to walk next to me if I fall (I dont have to heart to tell them, they aren’t going to stop it, lol) who are always looking when I stumble, to my friends who are checking in, praying, and dealing with me and my stubbornness. Bradley signed up for football, and I can’t take him and sit there, so I feel like I am failing him as a mother, I am 43, and I am being limited on what seems like the simple things, and it became too much for me. All this money going out, I just felt like I was this person bringing everything down, needing so much. So I texted my friend and asked her to pray for my mind, I knew I was in over my head and this darkness was holding me, I told her I was ready to go home, and I was so ready, begging to just go.
She called me, and I sat and looked at the phone, not wanting to answer, because I knew she would bring the light, and in that moment, I believed the lies, I believe that darkness was where I needed to be, and I was just angry, and didnt want to feel the pain, anger is an easier emotion for me. But I picked up and she brought the light, and tears of release started to flow. She said that 2 hours earlier God told her to send me something from a podcast she heard, that feelings do not have brains, that we HAVE to tell ourselves the goodness of God, we have to actively look for the light.
I wish I could say immediately the darkness was gone, but I could feel it lighten, I could move, and for the first time in 2 weeks I took it ALL to Him. Every single thing I took to Him, and just put it down.
And by the evening I laughed, the boys and I went in the pool for an hour and laughed a little. I know it is because friends have prayed for me that my head stayed above water, I know its friends who have sent what they see as just a little text, just a meal, just a grocery run, just a.. that has kept my head above water. My sister, and her friends have reached out, and I know all that is what has kept me above water, because I was ready to drown and just give up.
Today Shelly and I were on the phone for about 2 hours working on low sodium things, meal plans, and still have more to go. Michelle and I were looking at beds that will help.
Today I am able to see the light, remind myself of what God says, what He promises, and ignore what the darkness is saying, ignore what my feelings are telling me because they don’t have brains.
I will never be able to adequately let my friends know how much their prayers mean to me, how much they have helped, but man when they reach heaven and see……..I am so blessed with such good friends, who think they are doing nothing but just…..but are helping mold a whole family and hold them up.
I am thankful, I am blessed, and I know I can not walk this Amyloidosis walk, but somewhere deep down, I know I can with Him, I just got to get there again..minute to minute, sometimes second to second I have to tell myself look for the light….look for the light…