The past month has been hard. Really hard.

It’s 4am and I’m up dealing with a migraine. Rude. Seems like a good time to update:

Pain meds, Benadryl, Hot bath, ice pack on neck, Gatorade to chug and pickles. Forget countless neurologists, I found the regimen that stops them. Pickles were the last thing we added after I saw it on Instagram and it was the game changer. The salt surge helps open up the brain vessels.

Lately-My pain has been terrible. Legs, joints, muscles, arms, back, hips, neck and the list goes on. My inflammation is higher than usual. We are surviving off of lidocaine, pain meds, hot baths, grace and prayer. I do feel bad that it is worse at night and my lidocaine applicator has to be woken up to help.

In our quest to find answers, we saw ortho. Ortho ordered 2 MRIs when we saw them a few weeks ago. They could see in X-rays, the necrosis in the bone in my hip has gotten worse and I now have arthritis in my spine. AVN in the hip usually results in a hip replacement. You may have to call me the bionic woman soon. The spine/back will likely be symptom management. Prolonged steroid use got us into this mess, and will likely be what they will end up moving.

My poor endo! She tries to help manage my sugars but medical plans are always changing and mess with her work. She needs certain tests run to confirm a diagnosis; and me off certain meds; but other specialists keep messing up our plans.

Nephrology has also been kept on their toes, but he’s my favorite doctor so I don’t mind keeping things exciting. I have 1 order for an MRI of my kidneys that was rescheduled due to continued GI issues. Who wants to be trapped in an MRI with that going on? Not me.

Lastly, we are doing a brain MRI, including the pituitary glad. Endo wants to check to see if there is a tumor in the gland, as it can be linked to Adrenal Insufficiency that I was diagnosed with during the summer. And my PCP wants an MRI to ensure no changes, due to my migraines that we are all 99% sure are related to Tacro and ovulation (currently halted by medication).

Transplant wise, can’t believe we are 6 years post as of last week. From a cardiac standpoint, my heart is stable. We even have gotten my diuretic down to as needed, instead of daily! This is happy news for my kidneys and labs look much better, which will likely prevent a kidney transplant any time soon.

The 6 year anniversary, was a little bittersweet, because on average transplanted hearts last 13 years. Of course; I know of some recipients who are on 30+ years. But it was bittersweet to think I “lived” the first half of those 13 years, and I have so much more life I want to live. My team told me that I would likely need a second heart down the road, but our goal and prayer is to keep this one as healthy and as long as possible.

It’s certainly been a really hard summer and start to fall. Mentally, some days are good, some days are not so good.

But I saw this saying during September talking about mental health that said “try just one more time.” It’s stayed with me and has helped on my more painful days to keep going and try one more time. A reminder to hold onto hope for healing and a reminder that Hope wins if you try just one more time.

God is still doing big things over here amongst the crazy and it reminds us that hope continues to win.

Holding each of you and your intentions close in prayer.

Love, K