the clock has started...

I write this post from my very uncomfortable bed at Mt. Sinai in New York City. I was admitted to the hospital after seeing my doctor twice in a week with complaints of major abdominal pain,loss of appetite, extreme weight loss, nausea, and zero energy on top of lists of other things. We all agreed that being admitted would give me easier access to tests, pain control, and hopefully answers. 

To rewind about a month...this all started when a reoccurring abscess began acting up and giving me much pain and problems. I was able to drain the abscess by myself (sorry if thats TMI) but it was essentially the start of bigger flare problems to come, as usual. I can often tell a couple days or a week before my body is going into a flare. It just feels different, its hard to explain. When this happens i try to take every precaution i can to try to alleviate the problems before they get out of control but sometimes its just not possible. I began getting high fevers of around 102 every night and just felt overall beat down. I was so looking forward to kyra and my mom coming last week and i think the adrenaline of that was able to get me through the week without falling apart. The first day they were here i snuck an appointment in with my doctor to see if any bloodwork could reveal a little better what was going on inside. It was so beyond nice to see the two of them and even though i wasn't able to do nearly anything, i hope they had fun seeing some sights in the city. It was nice River was able to take them around a little bit because of some flexibility with work and they would come home and relax at night. Its really hard being so far away from the people that you love, and sometimes just seeing them is the best medicine there is. They were able to go to some of my favorite places including the brooklyn bridge & grimaldis, MOMA, Rockafellar center, Chelsea Market & high line, and the new 9/11 museum which was absolutely breathtaking. I was able to truck to that for a little bit before totally falling apart, but i will most certainly be going back several times in order to take it all in. My mom got me a membership so we can go anytime. Talk about one of the most emotional and peaceful places on earth...

Anyways Kyra and mom left and the day left i felt pretty good, i was able to go out to brunch with them and walk them to the train and then all of the sudden that night i literally hit a wall. Beyond pain, beyond bloated, couldn't sleep and none of my normal remedies could offer any soft of relief. This is when i knew i needed to see my doctor again and essentially thought i needed to be admitted to get the kind of care and relief i just wasn't able to give myself at home. Im not typically someone who is bothered by a lot of pain because i live my everyday life in some sort of pain or another, however a flare is a whole different ball game and sometimes pain medication needs to be taken. The doctor revealed that my blood work essentially showed what we already knew which i was fighting some major inflammation and infection inside and that was that, i headed down to the ER got a CT scan to rule out an obstruction and was admitted. 

Since I've been here my doctors have been great and its nice that my main GI doctor does in patient rounds so i actually get contact with him once a day and his colleagues several times a day. Essentially right now we are fighting a clock for this new drug vedolizumab (entyvio). I have currently have 2 infusions and was due monday for a third over a 6 week period of time. The vedo is so new and doesnt have much info out there about it but it is shown that it takes 10 weeks to work. Not 9, not 11. By the 10th week if you don't feel progress, changes are it isn't working. The struggle for me at this point is making it to that 10 week mark with a quality of life. In the hospital, they have against all my complaints re started me on IV prednisone and eventually oral prednisone for going home and getting me through the next month or so. This presents another challenge with the ten week marker because we need to be able to deceifer between which drug is actually working.  At 10 weeks i will begin to wean off the prednisone in hopes that i still feel ok and the vedo is doing its job. In the unfortunate case that it doesn't work, i have been in contact with a surgeon everyday that i have been here and have a consult scheduled with him around the 10 week mark to make some decisions if they need to be made. It has been beyond helpful to have the contact with him and just be able to prepare myself for what could be potentially to come, which is life changing.

Ugh. So now a whole different struggle we are facing is the fact that i am late for my vedolizumab infusion, which you would figure, I'm in the hospital, its easy, get it. However, just because this drug is so new and crazy and expensive, they will not do it as an inpatient procedure, only outpatient meaning i have to be discharged before i can get it. This is a difficult situation because I'm in the hospital because i feel awful, but the vedo is what in the long term will help me not feel that way. The doctors essentially want me to be discharged earlier than i technically should because they feel its best for me to try to get the infusion tomorrow. The plan will hopefully be discharged tomorrow morning and to get the infusion in the afternoon. This is pending I'm able to tolerate oral pain meds instead of IV which i haven't yet been able to do, so who knows.

Ive gotten so much love since being admitted via texts, Facebook, email, instagram, and visitors and all are so beyond appreciated and make this whole experience tolerable. River has been here as much as he can, but i need to know my fuzzy boys at home are taken care of too, so Ive been kicking him out to see them as much as he can. I even got a visit yesterday from my favorite little 7 MONTH OLD buddy jonah and his lovely mama. It was so special that they care enough about me to visit me and it made me so happy to see them. 

So...the clock is ticking. Only time will tell whats next i suppose. Thanks for your continued love and support and awareness for this awful disease!

Until next time, C