“I don’t want anything else to happen to you Mom. I want it to happen to me.” Oh, how my heart is breaking over conversations like these. How can my child want my pain? There are very few things that I have been grateful for, but one is that it was me. Not my husband or my child- me. For it must be unbearable to watch. To feel so absolutely helpless. To not understand this pain, this disease, but to be willing to take it on, because it physically hurts to watch the one you love.
I’m thankful it was me.
I dislike using sarcasm, but sometimes it just feels appropriate. HLH- “the gift that keeps on giving.” My arms have me writhing in pain. Ever since we came home, sometimes the agony has stopped me in my tracks. Burning, searing and unprovoked. It puts my crushed vertebrae to shame. At first, I thought it must just be the WORST tendonitis I have ever had. But the cascade of differential diagnoses: complications from treatment, overuse injuries, and fearfully the return of HLH…. finally took me to my PCP (Dr. Mellow- that’s a good name for him. Yes. Very calm, attentive, knowledgeable and understanding). Xrays and PT/OT definitely the place to start. I have difficulty lifting my arms read a book in bed, even dressing myself or pushing a soap dispenser! Nearly impossible to move and definitely painful. 6 weeks later, some improvement, but still a lot of pain. Xray normal (yay?!). Qualifying me for an MRI.
Dr. Mellow worked to get the MRI complete ASAP. We were all getting a little concerned at my lack of progress. Get this- THE MRI WAS DENIED!! “Why? What?” You say. I know, I’m right there with you. But Dr. Mellow took the time out of his day to get it approved. And I did complete the test.
I get so completely frustrated. I drop things constantly. I can’t pull my pants down without pain, I can’t pull my pants up without pain. So, if you ever see me walking around naked, you’ll know I’m not cognitively impaired, just having a bad arm day. I can’t push myself up in bed. The joints in my hands, “ouch.” I’m pretty sure I went from 40-80 in this last year. I’m hoping to slowly turn the clock backward. But, like I have revealed before, some of this is permanent. It’s just going to take time to find out how much.
That evening, Dr. Mellow called with the results. I told him, “I’ve been enough of a headache for you today.” He explained to me why the MRI had been denied. Simply- the reviewing doctor had never heard of HLH. “I wish he was on the phone to hear the results.” My skin went cold.
“extensive joint effusions… impaired bone marrow signal consistent with the patient’s history of HLH… thinning of the cartilage and fat pads… fragments measuring up to 2.0 cm in size are present in the joint capsule…
tendonitis, bursitis, rotator cuff remains intact no noted tears or impairments…”
Flashbacks of all the hip MRI’s the excruciating pain, lying in fetal position- and many of the results the same…”impaired marrow signal….extensive effusions….”
I crumpled. Nothing will ever be the same. I called Dr. Superwoman as soon as I could… “I was hoping it wouldn’t be there, but it is. I don’t believe that this is anything new. We don’t have any indicators that this is an active process. HLH was in your marrow. We knew that. If you took an MRI of your hip (which we did), it will show the same things. Send it to me and our guys will look at it and we will make a plan for pain control. I don’t believe that HLH is still there and active.”
Not active, but permanent. Not active. Not active. I certainly hope Boston comes to a similar conclusion.
Dr. Superwoman has released me to outpatient therapy and my arms have slightly improved with their help. It’s disturbing to think of my future. So lucky to have one, but so hard to see beyond what this disease has done to me.
A disease with 50% mortality. A disease that doctor’s have never heard of. A disease that insurance companies have never heard of. Social security has heard of it- you get immediately approved for disability.
A disease that my son wants to take for me.
The pain, the chemo, the immobility- none of that compares to the isolation and the anxiety. Something that I thought I faced alone, until a heard a quiet, calm voice say, “trust me.” I believe that voice belongs to Jesus. The one son that did take sin from me. And paved a way to heaven. The one person who truly understood fear, pain, anxiety and continued out of love. So I walk on. Hoping that each day is just a little better and trying to hold on when they aren’t. Still thankful that it was me.