Eeeeee!!!

Gosh I am so excited!

Ever since getting discharged from the hospital, whose name we will not mention, the end of April, I have been trying to resolve billing problems. This has caused me SO much stress. Why? Because they say one thing and do another. Excuse after excuse when I do get a hold of someone, but most of the time no one returns my calls, emails or snail mail letters. One big bill was for charges I was not responsible for per the contract with my insurance (charging for a computer to read off results, I mean come on!). I even had my insurance talk to them multiple times. I see the whole thing as fraud. One minute I'm told my account is on hold, the next I'm told its not.  My major concern and why it stressed me out is because I did not want to get sent to collections and have it affect my credit.

Recently, I left a not so nice voice message when they once again didn't pick up, and I said I'm taking this to the next level. That I did. I got someone else involved, contacted the Better Business Bureau and contacted the Joint Commission. I actually woke up this morning thinking my next step is to contact the local news.

Thank God that step did not have to be taken. As I flipped through the pieces of mail I saw a letter from that hospital. I thought to myself, God please let this be a letter and/or a zero balance statement and not another bill! I opened the letter and oh my gosh my excitement skyrocketed! FINALLY!!!! My account balance is now zero- letter AND statement showing so. Thank you thank you thank you God!!! I prayed for this every day and a prayer was answered!!

Furthermore, there were two other billing issues unrelated that got settled this week as well! What a good week!

I'm thinking I should give a little update too. Long story short, I'm still the same physically. I think I last mentioned the last med I was on caused my leg to stop working. After discussing this with my doctor, we agreed that I would stop the medication and see how I did. I improved... I use the word improved lightly because all I mean by that is that I was back to "my normal" pre-this medication. But my ox sat is still dropping and breathing has still been worse. My INR (blood thickness/thinness) has been within therapeutic range for the PE treatment so most likely not another clot. It almost feels like an asthma feeling- which I was diagnosed with in Tx but then told I don't have it when I came back here. Maybe it's like a mild asthma brought on by allergies? Or maybe its all MG related? Or maybe POTS related? Who knows.

I have upcoming appointments with both my neurologist and pulmonologist so we'll see what's going on and what happens next. I'm kind of thinking immune suppressants are going to be the next option. Not thrilled about that one as they can cause SUPER serious side effects/resulting conditions and I literally can't be around anyone sick because I basically have zero immune system while on them. The purpose is to make my body stop attacking itself (auto immune disease). But we'll wait and see what the doctors say/think. Furthermore, my hematologist thinks she wants to keep me on the blood thinners past the 6 month mark. Booo to that. Tomorrow is 5 months so I would only have 1 month left. But she thinks with as active (or should say inactive) as I am, partnered with a clotting factor, it's not really safe to be off of them. I don't know what I think but I have an appointment with her next month to discuss it. The biggest concern being on them is of course the bleeding risk. And it's not a big concern, but I would like to be able to eat whatever I'd like without portioning my greens and eliminating my supplements.

Aquatic therapy has been ok. The first session we did WAY too much. My body stopped working for a few days. I explained this to her and how repeat motion makes MG really bad. So the next 2 sessions we just did standing in the pool and a little walking in pool. Lame right? Not really. It helps my balance, posture, strength, endurance, everything. And we added massage therapy. Who knew for the past 3 years insurance covers this! She said my back is super tight, which I knew, so we thought this would be a good idea and might help with the pain. One session of that so far and it made my lower back problem (fissuring/disc herniation) flair up but fortunately not for long. She'll work on my upper back next time. Skipping both therapies next week because I have too many other appointments.

Lastly, the MG Walk is in just over a week now. This is the MG Foundation of America's national annual fundraiser. The money raised goes towards research for treatment and search for a cure, advocacy and support and programming for MG patients/families. I feel strongly about supporting this organization as it directly helps me. Seeing as treatment hasn't worked thus far and I'm not improving, finding more treatment options would be awesome and finding a cure would be a true miracle!! I believe it can happen! BUT it does unfortunately take money to fund all of it. So if you haven't yet, and are able to, would you kindly make a donation? This is my challenge to you- $5. Just $5. If you are reading this and can donate just $5 I will most definitely meet my goal. Right now I'm just under $300 away from that goal! MG patients have the nickname of snowflakes because we are so much stronger and can do so much more when we come together. The same goes for this- if all of my family and friends can donate, together we can make a difference. Thank you so much for anything you can give! And thank you again to those who already have donated!!

Many many blessings to you all!