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Just a quick update on where I am in my health journey.  I would love to sit here and write that I am doing really well and the course of treatment that the doctors have me on is working, but they are not.

A few weeks back I went to my cardiologist and after studying my heart, they needed to do an ablation because my heart rate was going over 220. Since the procedure I have still been symptomatic and my heart rate is still going pretty fast, at lest for me and what my body can handle. at rest, it is still going around 105-110. When it goes there, I feel very off balance, shaky, short of breath and very light headed. It is quite hard for me to function at full capacity feeling that way and to be honest I don’t feel safe driving, especially with my kids. I have talked to my cardiologist and they seem to be OK with these numbers because of my systemic mastocytosis. However, I am not.

I went to my immunologist last week and we conducted an aspirin challenge to see if my body could handle mass amounts of aspirin without having an anaphylactic reaction. I did fine. The reason for the test was because my body is also overproducing prostaglandins. Your prostaglandins are produced and released in your mast cells or tissue and when they are released, they cause pain and inflammation in your body. So yes, I am overproducing those so my body is in constant pain. UGH. So we were testing aspirin so I could take about 800mg a day to reduce the pain in my body. We also talked about my heart rate issue and he said he was going to make a call to the cardiologist because although my numbers may be in “normal” range for him, they are interfering with my quality of life and he was going to ask him what they could do. A beta blocker is not an option for me because I am at very high risk of going anaphylactic and if I had an attack and needed epinephrin, it would be ineffective because the beta blocker would block the epinephrine from working.  UGH!!!

This past Monday my stomach began not to feel very well. I thought I was experiencing the stomach bug but it is not that at all. Tuesday into Wednesday I started experiencing sharp intense burning in-between and underneath my ribs. It kept me up all night Tuesday evening and so I emailed the doctor in desperation Wednesday morning at 6am asking him what I can do. I received a phone call from his office at noon and I was there by 2pm. He realized that what I am experiencing is part of the disease and said we needed to change direction. So he put an IV in my arm, gave me 40mg of steroids, gastrointestinal medicine to ease the pain in my stomach and 1000ml of sodium chloride. The pain eased and we talked about whats next. So, here is what is next. I need to go back to the oncologist and get another bone marrow done. They did not grab enough when they did it about 2 months ago and they need to see if the mastocytosis is mutating. If it is not, I will be put on a drug called imatinib, which is a drug they use for leukemia and bone marrow disease patients. If it is mutating, we will have to find another drug to use and I will possibly have to go to the Institute of American Health in Bethesda Maryland since they are the ones that are really studying this disease. I will let you know more on that when I know more.

Yesterday I had a bone density test to see if there has been any damage to my done density so far since I am at HIGH risk of early onset of osteoporosis. It was also done to get a baseline to see where my done density is currently so we can see how it may be deteriorating in the future. I got a call today from my family doctor and the scan showed I have mild to moderate osteopenia. UGH.. It has started. I emailed my immunologist to let him know and I am waiting to hear back from him.

I had another horrible night last night, my body was in so much pain and I woke up miserable. Complete body aches, brain fog and extreme fatigue. I laid around some of the morning but had to get up and function for my three beautiful kiddos.. My stomach started in FULL force again this afternoon and is still going strong. I know God will give me some relief tonight so I can get some restful sleep.

I want to say that Gods hand is in all of this and he has already done some AMAZING things. He has set me up with amazing and fabulous doctors that truly care about my well being and my quality of life. Dr. Sugerman, my immunologist is beyond fabulous. He is keeping me on 10mg of prednisone everyday, allegra and zantac 2x a day, 1000mg of calcium and 2000mg of vitamin D 1x daily. I was also prescribed something for my stomach issues, not sure of the name, but will take that 4x a day. And we will see what he wants to do as far as the new “diagnosis” of osteopenia when I hear back from him tomorrow.

So where am I at spiritually??? UGH!! trust me I am frustrated and so so so beyond tired of not feeling well. I would have to say I average 3-4 days a week of feeling horrible. That being said. I continue to lean in and press into God. God is good, He is faithful and He is just. He is paving ways for me and truly has placed me in great hands. I continue to stand firm on his truths and promises and I continue to rebuke all and any attacks from the enemy, who is trying his hardest to tear me down in any way possible.  I am holding onto the cross and NOTHING can separate me from HIM or His love. His mercies are new every morning which means He blesses me everyday in abundance. His love, strength and power carry me through my toughest of days and HE never fails to show up. I am running the race set before me with my head held high and my eyes focused on him. To me there is no other way.

Prayer requests:  1)That I get into oncologist soon, get the bone marrow drawn and we can proceed with better treatment.  2)For my family who has been so wonderful but are so sad that i never feel well. Avery started crying yesterday and as I left for the doctors. she asked, “mommy when are you going to get better?” And I have to answer, “sweetie I do not know. That is why I am going getting tests done.” She also wept because she hates that I always go to the doctors by myself and she feels sad for that. Sweet precious girl. 3) That I get some relief soon. My body just ACHES.. 4) For Gods complete and anointed healing 🙂

I will continue to update you. I am exhausted and just not feeling well but I know there are a lot of you praying, so I wanted to give you the latest news.  Thank you all for loving me and covering me with prayer. I would not know where I would be without you all.. Truly blessed