“I cry out to God Most High, to God who fulfills his purpose for me.”Psalms 57:2 ESV
I have mostly kept it all together: for myself, for my husband, for my kids, for my mom and those around me. I know God has a plan, there is no doubt in that! I have prayed and held myself strong and steady until Monday. Last week I spent a week in the hospital getting 5 days of Immunoglobilun Therapy. This was IV and because my pulse & blood pressure runs extremely low it puts me into the ICU unit. There is nothing more fun than to just be snoozing along and the nurses come into the room and call your name to make sure you are ok (I thought only my husband did this to randomly aggravate me) & each time it would be because my heart rate or blood pressure would drop. Genetics I guess is where I get it. My mom’s dad had to have a pacemaker because his heart rate was so slow. He also walked like a snail and my grandma used to tell him he was going to “slow himself to death.” 😂😂😂
Anyway, I have been home for 4 days and I am exhausted. I don’t feel good, my legs feel like they weigh a ton and so does my neck. I have had headaches off and on (I am not a headache person-I just don’t have them) and my breath is short. What in the world is happening to me? I can’t go to work because I can’t escape the bed. This is not me at all!! My doctor called me back on Monday to tell me some news. I found it devastating and questioned why me? I know why me-if anything odd or unique is going to happen on this earth I WILL be envolved in it. I am a freak of nature! 😳 If you read anything about Myasthenia Gravis there are several ways to diagnose it. Single fiber EMG that stimulates the nerve -it’s like touching an electric fence over & over & over; NO FUN! An ice pack test which was discovered by the doctors at MCG, my right eye has ptosis or drooping of the eyelid, place an ice pack on it for a minute and that bad boy opens right on up. When they did that test I immediately decided I needed an insulated, bedazzled purse by January 2017 for my daughter’s wedding! The pictures will be awesome if both of my eyes are open! Another test is a MRI to diagnose a tumor on the thalamus gland in the chest that will also cause MG – I don’t have a tumor. Lastly, they did blood work and check for two specific antibodies that will be positive with MG. Occasionally they have found somepeople are negative on those two labs. The Medical College has a grant to study those patients. They are simply testing the blood of those patients for another antibody cause LRP-4 to see if its positive. Do you see where I am going with this? Yes, I am the freaky kid. I tested double negative for the usual blood work but by golly I tested positive for the oddball, we got a grant to study this antibody , blood work. Monday my doctor called to tell me and with that conversation he said we may have to start over because what we are doing doesn’t seem to be working. Cue. The. Tears…
I FEEL like it doesn’t seem to be working. I FEEL like I have taken two steps forward and TWO steps back. The only thing I see is my hair falling out, my face like a cabbage patch kid and my clothes struggling to wrap around all this luciousness. (Is that even a word?) I don’t want to start over! I want to be fixed. I want to go back to work. I want my husband to look at me without worry. I want to take care of my family and not have them taking care of me. I was over all this mess! I’ve kept a lot of this from our children because I don’t want them to worry about me. I don’t want to upset their apple cart the way mine has been. Heck my apple cart has been stripped like a BMW in downtown ATL! But with all of the craziness we decided to just sit them down and be frank with them. Twice we have been to the ER and my breathing has been close to she needs a ventilator stage. Too close for me! We all cried because this disease is a game changer. A huge game changer but through it all I know God has a plan and I told them that!
How do I know God has a plan? I know because he is a Sovereign God. If you look up sovereign in the dictionary it states “possessing supreme or ultimate power”. He’s got the power. The power to cure, the power to heal, the power to break every chain that binds us. He had the power to speak the universe into place. He can heal me. He has got this. I have got to learn to let him!! Did you get that last statement? I, Melynda Fuller Poss, have got to LET him! I can’t fix this but I know who can! Yeah, He smacked me with that little lesson after having my mully grubs Monday night/Tuesday morning.
Today I had my appointment with the doctor. We are changing up medicines again but with renewed hope. The IVIg or immunoglobulin therapy has a peak time – I didn’t know that – it’s in the next few days. Praise Jesus! I could pick up in the next few days and start a new medicine. My generalized weakness could improve! Nothing feels any worse than your legs feeling like your knees will buckle at any moment or your head feeling like you can’t hold it up. Wait, I take that back this headache deal is ridiculous! I completely sympathize for anyone with headaches! So with renewed hope after talking to the doctor I know God has a plan and it is perfect. Perfectly made for me. What it is? I don’t know. How it will end? I don’t know. How will I will choose to handle things? I don’t know. Who is in control? That, I do know! The One True, Sovreign God, Creator of heaven & earth, The Alpha & Omega, MY beginning and my end that’s who!
He placed me at a facility that just received grant money to study blood work on patients with Anti-LRP4 autoantibodies in AChR- and MuSK-antibody-negative myasthenia gravis. And ladies & gentlemen-That is ME! Who does that? An all knowing, all powerful, loving God that’s who! I have said it before sickness is of the devil but I claim healing in the Name of Jesus! I can’t wait to see the outcome of this journey. I hope y’all can bear with me! Thank you for your continued support and prayers. They have certainly sustained me thus far!
Now to apologize – if I haven’t text you or called you back, please know that my trip to the doctor wore me out. I didn’t even eat supper until 10:30 because I collapsed when I got home. I didn’t have the strength to chew my supper when I initially got home that’s how weak I was. I have more tests to do and new medicine to adapt to but we will trudge along on our journey hopefully with a smile rather than a tear. May God bless you on whatever journey you may be on. ~Melynda