It’s getting to be the end of the year, and I have yet to write an update this season. It’s been a hard season, well couple of them. I would say my life really took a turn in May after my birthday. As we all know my spine problems worsened to the point of a few really difficult hospital stays. Now, I am bedbound bc I can’t walk or move without spiking crazy pain that brings me to tears and doesn’t go away easily or much at all w meds that keep me awake and make me sick. It’s a sick game. I’ve had to wait over a year now for a treatment that helps my back besides surgery. I’ve tried everything possiblethere and they’ve finally decided I’m going to have surgery-but I have to get these bone scans first and ordering those has been the most difficult thing ever. I know I’m dramatic to some… but let me explain this process to you… the first doctor I saw outside of my regular hospital tried to order a lumbar bone scan with Spect CT around the middle of September. This was the first time it was brought to my attention that the surgery I had when I was 14 in my lumbar spine was complicated and complex. Shocker right?? Pick up the major running theme in my life yet? Anyways, the surgery was for a fracture in my spine and the metal they put in was not common. This doctor said he’s only ever done one of them himself and he’s obviously very qualified so I’ll take his word. But insurance denied him/the scan all the way up to an appeal level. They said I didn’t do anything yet to warrant that type of scan… i.e.- have other, less extensive scans first (mri, X-ray… which is false, I’ve had 4 lumbar MRI’s just in this past year alone) or tried rest, PT, any injections (had 6 different kinds). So, that process took about 3 weeks because the medical record department at my hospital is in a weird transition still with Covid and it’s extremely difficult to orchestrate getting something ordered. So getting my medical records to that doctors office for insurance was so hard. Everyone is working from home, not together in an office… so there’s multiple extra steps now. Mix that up with a couple hospitalizations and it’s now mid-to-late October. That first doctor we saw outside my hospital was out of pocket and because of my possible complications, we figured it was going to be extremely expensive to go forward with him. We got a recommendation from a trusted source to another orthopedic surgeon who also agreed we needed to push forward with surgery but he also needed the bone scan. To my parents and I , it took awhile to fully comprehend why they couldn’t just cut me open and go from there- fixing whatever problem they find. But due to the complexity of my health, and the risks possible… they want to have a full picture and completely clear idea going in. He knows he wants to do an Anterior Lumbar Interbody Fusion (ALIF) on L5-S1 which is where they enter in through my stomach instead of through my back to do the fusion and then he wants to put an artificial disc above on L4-L5. I am also herniated on L2-L3 and L3-L4, but those aren’t causing trouble like the lower ones are. Those are both completely ruptured. It’s extremely painful, I can’t stress this enough. The scans are Dec 15th, and I follow up with my orthopedic surgeon on Dec 17th. Will update after!
To throw another wrench into my world, my stomach problems (which I rarely talk about) worsened tremendously to the point of getting diagnosed with Gastroparesis. Gastroparesis is paralysis of the stomach muscles and nerves that delay gastric emptying and cause mild-severe symptoms such as nausea/vomiting, abdominal pain, distended stomach/bloating, feeling full after just a couple bites, acid reflux, weight loss and malnutrition. I was so sick that I spent the day at the Extensivist clinic instead of going to the ER, getting IV fluids, IV pain meds, and IV nausea meds… well they actually turned out to be intramuscular shots because my veins were not cooperating. Then, I did a stomach CT with IV contrast and oral contrast… Mochacchino special ;). It showed that my stomach was extremely full of food and distended even though I had not eaten in over a day. To treat this, I went on 2 new medications and dramatically changed my diet to small, bland, frequent meals. So I eat about 6 to 7 small meals a day of not very fun food. The medications I’m currently on are temporary for a flare, so I’m working on weaning off of them. I will be fully off of them on Monday. I’m definitely in a little bit of better shape than I was but nervous to transition off the medication… I’m also working on getting into my G.I. doctor sooner than January 5th. I feel like this diagnosis is extremely heavy and has taken over my mind the past two weeks or so. Everyone I have talked to has expressed how difficult of a disease it is and the hard restrictions it is placed on their lives. I know based off of past experiences with my other diagnoses, that this is going to be a hard battle but one I can get through. And I can only hope that the future holds more answers.
As you probably already know or can tell, I did not have my kidney procedure. That is due to the condition I am in with my stomach. In the procedure they have to place a stent in my ureter and it is extremely painful for about 7 to 10 days after, I don’t think I can handle that on top of the abdominal pain I’ve been facing. We put a pin in it for now, and will reschedule after the holidays unless the pain becomes unbearable again.
At the end of the month, we will be seeing a CTLA4 specialist. We look forward to this as this will be the first person we will talk to that actually knows what the disease and genetic mutation is. If you can recall, I was found to have the genetic disease back in January after working with a geneticist at Mayo clinic. To this day we have been given a little information about it and no doctors have known what this is. But we do know it is probably the cause of my autoimmunity and we need to get it figured out ASAP because it might be the missing piece to the puzzle. Please pray for this appointment to be full of insight and help and not judgments and more unanswered questions.
So, the back still remains number one priority unless the Gastroparesis takes front. We will have to see which one is more debilitating and painful. The triggers for GP include some of the treatments I’m doing for my spine, so that’s complicated. I’m very anxious to get the scans done but hopeful to have a clear path forward. It feels like we’ve been in a standstill for a LONG minute! I am at the fault of a medical system that is not made to help you, it’s made to make money. You have to fight and fight HARD if you want good medical care. I have pushed through the hardest appointments, worst doctors, and heaviest conversations to get the care I have today which is a team of doctors that know for me, care for me, and look out for me and my future health. But those of you that have been following my journey have been able to see the hardships I have faced with this illness, these illnesses. I’m thankful to have the support of family and friends also who care for me unconditionally and build me up instead of tear me down. It’s been an extremely difficult year, one I would never want to relive. I got diagnosed with Lupus, kidney disease, diabetes, and now Gastroparesis all while dealing with severe spine problems. It’s really been a feat. But I am staying as positive as I can and I’m leaning on my team of support to get me through this time.
Thank you for reading. Anyone w Gastroparesis tips, please reach out!
<3, Sam
THE UNDIAGNOSED 