This week has really been full of ups and downs. From a trip to the ER Monday, to a doctors appointment everyday this week, there has been a lot going on. The steroid infusion I had a week ago yesterday did not provide any relief. When I went to my primary care doctor on Monday she said that she had never seen me look as bad as I did, and was concerned with the type of swelling that I was experiencing, and my high blood pressure, she wanted to make sure that my heart or kidneys weren't in trouble. She performed an EKG which showed I wasn't in heart failure (such a blessing from the Lord). She wanted to see if 48 hours on a diuretic would help get some of the fluid off, and if not then she would have to admit me to the hospital. We were waiting for some kidney function tests before I could start the medication, but there was some mix-up, so the results didn't get to the doctor until the next day. Later Monday evening my blood pressure had risen and I was experiencing a bit of a headache, so my mom decided to take me to the ER, not wanting to mess around, particularly because of my blood clot. The doctor performed another EKG, a chest CT & x-ray, as well as heart, kidney, and liver function. Thank goodness that everything came back good. My primary said that she could possibly hear a little fluid around my lungs, but the doctor said it could have been such a small amount, that it wasn't picked up on the CT or x-ray. They gave me some IV diuretics, and said that I should notice a different when I woke up in the morning, and to call my primary back and give her an update. Unfortunately the swelling did not go down, and was actually a bit worse. The nurse at my doctor's nurse told me that she wasn't there, but that I needed to be seen by one of her colleagues. Her colleague was very nice, a great backup for when my primary isn't available. She said that this was probably a progression of my disease, and put me on a steroid taper, as well as to continue the diuretics, and to let Dr. Carrasco's office know what was going on. I wasn't that thrilled about taking more steroids, but anything to help. Dr. Carrasco's office contacted him while at his conference, and if possible, he wants to see me before my scheduled March 6th appointment. The steroids haven't helped a lot, but I'm hoping once I finish the taper I will have some relief. My weekly blood work jumped a few points from previous tests, but we shall see what next weeks blood work shows.
I have been feeling so many different emotions this week, and of course being on the steroids makes it difficult to know how much of it is because of them. I have been really relying on the Lord for strength and guidance this past week. Part of me wants to stop this Cell-Cept and switch to something else. To what, I have no idea. I knew I would experience more symptoms, but not this bad this quickly. I have been praying that the Lord will help me with this mix of emotions I have been feeling. I find that I get frustrated easily, and get short and snippy with my family, and they don't deserve to be treated that way. They have been doing a good job of trying to be as patient with me as possible, thinking the steroids are a big part of it. I don't want to use the steroids as an excuse for acting out what I'm feeling, even though they are known to cause mood changes. I know that God is the one thing that can truly bring me comfort and peace with all that I'm feeling. I love what Romans 5:1-2 says, "Therefore being justified by faith, we have peace with God through our Lord Jesus Christ: By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God." This scripture verse is very comforting to me, because it helps me to know that by having faith, I have peace with God through Christ. My faith in God has been the one solid thing throughout this journey, and it continues to be. Whenever I am feeling whatever it is I am feeling, relying on my faith always grounds me. And that gives me the strength and peace that I need to continue on this roller coaster, no matter how many ups and downs, and loops there may be.
Joyful Love
&
Blessings In The Lord
Alexandra K. Acosta
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