This past weekend my husband and a very loving faithful friend put their heads together and planned a weekend away for me. A weekend which was very much needed for a variety of reasons. You see, life since June as been such a whirlwind of emotions. I have been in the midst of a heavy saturated battlefield and my tools had been getting worn down. I had been using them time and time again and I never really had taken the time to sharpen them, time to re-equip myself for the battles I had ahead. This past weekend revived not only my relationship with the Lord but it revived an inner peace that I desperately needed.
You see starting back in July life has been a dollar coaster of not only health issues but of emotions. Back in July I started getting sick and having anaphylactic reactions out of no where. We have run a bunch of tests, have had a heart monitor placed in my chest back in August which cause me to go into 25 minutes of full on body tremors and the latest was several weeks ago I needed to have a bone marrow biopsy. It came back positive for everything they thought I had. It’s called systemic mastocytosis. My body is basically over producing histamine and mast cells and I am at high risk of going anaphylactic at any point. I have also been having problems with my heart rate so I went to doctors two weeks ago and this is what we have right now…
Went to cardiologist and Need to have a study done on my heart and possible ablation.. Have severe tachycardia issues where my heart rate in seconds goes up super high and drops super quick that will be done tomorrow Thursday February 26th. The Immunologist has increased my prednisone to 20 mg every other day. I have been on 5 mg since August and now increasing it. Staying on allegra and Zantac 2x daily, adding 2,000 mg of vitamin d, 1,000 of calcium and always need to carry 2 epi pens on me at ALL times. I am at high risk for anxiety, depression and early onset on osteoporosis. Have to go to optometry dr to check for steroid toxicity (glaucoma and cataracts) which is on March 4th and have to go get baseline bone densitometry done to see if I have had any damage to my bone mass which is also on March 4th.
Went back to immunologist this past Thursday and he is doing an ibuprofen challenge on me to ween me off prednisone ( if my body doesn’t go into severe allergic state or in an anaphylactic state from the ibuprofen) and put me on a drug that they treat leukemia and bone marrow disease patients with to see if that works. If not then have to have another bone marrow to test (they didn’t get enough last time) to see if my disease is mutating. If the drugs works I am in the clear of it mutating. If they don’t then I will have to have the bone marrow done see how bad it is and get the right treatment. He said this is just a difficult disorder to have and he wants me to get the best care possible. He has been beyond fabulous contacting the Institute of American Health, all my other specialists and is really working overtime on trying to give me the best quality of life. He said this is just a difficult disorder to have and he wants me to get the best care possible. He has been beyond fabulous contacting the Institute of American Health, all my other specialists and is really working overtime on trying to give me the best quality of life. So beyond blessed…
The reality of life for me right now is that I just really don’t fell well a great deal of time. My heat rate is off quite often, some which is from the disease and others front he tachycardia issues. With the disease my heart rate has been averaging around 105 and when it spikes it goes to over 188. OUCH!!!! Anyways, when I do not feel well I am extremely fatigued, heart rate is off and I live in a state where my brain is in fog, confusion and disorientation. The other reality of my life right now is that I have three adorable little kids that need every ounce of me, so when I do not feel well, I still need to function at 100%.
So, with all the above coming crashing in on me, I have definitely gone through a slew of emotions ranging from fear, anxiety, frustration, anger, questioning why me, Praise and peace. I have felt alone, sad and at times thinking I would not have enough strength to walk through this. When I look into the future and what it may hold, I often times get a knot in my throat and burst into tears. The fears I have a real and the unknown of this disease and what it “can” do frightens the heck out of me. I think things like I don’t want my kids to witness me deteriorating. I don’t ever want them to experience me going through another anaphylactic episode again because the trauma it had on them makes my heart sad. I fear having an attack while driving, or while they are with me, and the list goes on.
But as I have had all these fears, God has showed up and showed me how faithful he is. First off, I have an AMAZING husband who had held my hand, prayed with me and over me and a husband who is committed to walking this journey out with my loving me every step of the way. My kids have been fabulous, friends have stepped up to the plate and my mother has gone above and beyond to make life easier for me. My doctors are fabulous, every single one of them and they are ALL working together to get this under control.
What I have learned so far in this short journey is as sad as I get, I know beyond a shadow of a doubt that God is in control and I will be ok. I serve a faithful, loving God whom I know is fighting this battle double time. These days away have allowed me to reconnect with God, relax, soak in his beautiful creation and love and has allowed me to sharpen my tools to be ready to tackle the battles ahead. I was so depleted and was loosing hope. I had become introvert and began a pretty good sized pity party for myself. I began to feel like I was a victim instead of a tool God may be using in his kingdom. I have come to peace with the fact that God may not change my circumstances in this season but that my attitude and the manner in which I walk through this journey should be nothing short of glorifying my Heavenly Father. I continuously pray for his anointed healing and I always pray for his SHALOM peace in every ounce of my being. I know he has not punished me with this, but is allowing me to talk through this, with Him so that my faith, endurance and love for him only increases.
I ask for your continued prayers for me and my family. It has been a long long season but God has showed his faithfulness time and time again. I will continue to blog about this journey, my raw emotions, the real struggles and Gods faithfulness through it all. My prayer is that my blogging will not only help “heal” me but would be a tool to heal someone else as the walk through some life changing things.
Isaiah 43:1-3: “Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters,
I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned;
the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior;
I appreciate all your love and support its truly appreciated.. If you have any questions or want to pray please feel free in contacting me.. You can sign up through my blog to be contacted when I post or you can email me at avorlicky03@gmail.com
Much much love