Today’s a huge day! But first let me catch you up on some major updates. About a month ago, I went and got some testing done to try to help support the insurance claim for the expensive medicine that is really hard to get approved. The tests showed many abnormalities and this doctor and the Yale Lyme specialist worked together to make a case to submit to my insurance***. To my surprise, it was approved 3 days later! The medicine is called IVIG which stands for intravenous immunoglobulin (often known as “liquid gold”) and it’s essentially a whole bunch of antibodies taken from 10,000 donors to fight what my immune system hasn’t been able to, particularly conditions with an autoimmune basis. I will be getting weekly infusions with a nurse at my house and have been told to expect flu-like symptoms and an excruciating headache after the infusions for several days. Then I might have a good day or two before my next infusion, and I’ll have weekly infusions for the foreseeable future. Basically, it sounds like my quality of life is about to go further downhill and that’s honestly pretty scary, but even local doctors here have wanted me to get IVIG for 4-5 years now so I’m also excited and very thankful for the opportunity.
Some sad news: I was actually supposed to get my first infusion at the beginning of June, but it’s been postponed because the second antibiotic (the weekly injection I talked about in my last update) has been causing headaches that have gotten progressively worse each week. Weeks 9 and 10 I had to stay in bed on pain meds everyday both weeks except Thursdays (the day before the next injection), and so I unfortunately had to stop that antibiotic before I could start the IVIG because the headache side effects from both are pretty brutal and IVIG is more essential for me. If you know me well, you could probably guess I was pretty bummed to not be able to “stick with the plan that is best for potential improvement” and continue antibiotic treatment during IVIG (like I wasn’t tough enough or something). Trusting my doctor with this one…
TODAY is the day! Today I have my first infusion which is a trial dose 4-6 PM and if it goes well, I will finish the rest of the dose (double what I get Friday) either Saturday or Sunday before starting weekly full doses. If you pray, here are few things I’m particularly worried about:
- I’m really scared about side effects, particularly the most common one which is a severe headache. I just honestly can’t imagine my headaches getting any worse and I’m not sure how I’m supposed to tolerate that. Please also pray for wisdom in what medicine to take for these headaches and that something that I have will work to at least take the edge off.
- Honestly, I’m pretty weary and feel about 2% ready to start a medicine that will make me feel much sicker than I currently am (I guess 6 brain surgeries since 2015 will do that to ya ;) . I’ve been told it’ll be at least 3 months of weekly infusions until I see any improvement at all and even then, I’ll be so sick from the medicine that it’ll be hard to look back and see improvements from my current baseline. Please pray for encouragement, endurance, and hope and trust in the Lord.
- Please pray for my home health nurse, Tonya. Over the phone, she seems very caring and told me she has done nursing in various settings, but I’m pretty sure I might be her first patient getting an IVIG infusion which is pretty concerning to me (and she knows nothing about my health situation/history, etc at this point).
- Please pray I can tolerate IVIG, it starts working, and God uses it to start to heal my body and mind in significant ways!
***A quick note to the people who donated to my GoFundMe last summer or anyone interested in why I’m traveling to see doctors and paying them out of pocket for really expensive appointments and tests with the money you have given. These specialists aren’t contracted with any insurance and see 1-3 patients in a full work day. They get paid far more per patient but see far fewer patients and then have the time outside of appointments to fight for insurance coverage for medicine we need (and do additional research for our cases, lobby for change in how Lyme is tested/diagnosed, etc) during the work day. My local doctors here are amazing and have told me they have up to 22 patients a day and most of the time are responding to my messages to them late at night – I got a message yesterday at 11:37 PM from a Duke doctor answering a really important question for me. They don’t have time to deal with insurance companies directly even though my local doctors have been telling me for years that I need IVIG to have any chance of significantly improving. I just want to THANK YOU again for donating so generously for this opportunity to see these specialists and therefore get this medicine. I really can’t even begin to communicate how big of a deal it is that I’m getting IVIG! There isn’t a day that goes by that I am not truly grateful for all the people who care and pray for me, particularly through this wild health saga.
Thank you to everyone who has brought me meals, prayed for me, visited and have thought of creative ways to love me well.
If you’re local, currently the best way to help practically is with a meal. Here’s the link: https://mealtrain.com/o37n7d
Kelly and I having fun and staying safe on our roadtrip!
Grace and peace,
Alison