Disease Thread

[DaBigTrain]

Hey guys.

So it's been a while since I last gave an update here. My last big update was after a few weeks on Humira and I was doing a lot better. Well, that lasted until about the end of July. At which point my symptoms came back with a vengeance sadly. The start of August I was back to barely being able to leave my apartment and I had to do grocery delivery again. At the end of August my dad came down for a few days and went with me to my follow up appointment with my Dr. They said that sometimes it takes a while for the medicine to really start working again and we should wait a little longer.

I was still working but not as much and my boss kind of let me slack a bit because he knew what I was dealing with. Eventually tho he convinced me that I should go on FMLA/STD since that is what it is for. So since about the second week of Sept I have been off work and my mom came down at the same time and has stayed with me the past 2 months. I wouldn't have been able to take care of myself without her help. I have been back to being almost unable to walk or sit normally, sleeping can be rough getting comfortable too. I had been talking to my Dr and since it had been almost 4-5 months and seeing no results, we decided it was time to move on to something else. Humira is the ONLY approved medication to treat my condition, but there is another treatment that has seen positive results and is in the same class of drug as Humira. Through a lot of hoops and stuff I was finally approved for this new medication a few weeks ago. The medication isn't a new drug but treats a lot of the same things as Humira.

Tomorrow, finally, I start my new medication called Remicade. When I was using Humira it was just a shot I gave myself every 2 weeks, with Remicade it is done by infusion. So tomorrow I go to the infusion center and will get my first dose via infusion (IV). My mom left on Saturday morning, but my dad flew in Saturday afternoon and is taking me to get treatment. Then we are headed back to KS for a few weeks until I have to come back to Texas for my next infusion. I am so hopeful that this works better than Humira and keeps working. Dealing with chronic pain just takes it out of you and getting a glimpse of what a new life could be, and then having it taken back again has been very rough.

There are other drugs in the pipeline, but Remicade is the last line until then, so this needs to work. Anyways just thought I would give you guys an update. This is a terrible, terrible disease and I just want to get better and back to a semi normal life.

Go Cats

Today marks 1 year since my first dose that has given me a second chance at life. Crazy that it’s been a whole year. The day after I was in a wheelchair going through the airport. 4 days after I was able to turn over in bed for the first time in ~4 months. Spending Thanksgiving with my mom in AZ this week but my flight home Sunday will be my 30th flight this year, all but 4 have been vacations/trips. Lot to be thankful for this year, guys.

[wetwillie]

You think going gluten free and dairy free is helping too?  I know I feel a ton better when I eat that way but damn it's hard.

[DaBigTrain]

You think going gluten free and dairy free is helping too?  I know I feel a ton better when I eat that way but damn it's hard.

Yeah I think so, it's frustrating not really knowing if that's a trigger or not tho. Yes it is extremely hard, even ordering is hard because some stuff is just implied and not listed. An example being at a Mexican restaurant with a dish coming with rice and beans, it doesn't say it but the beans always have cheese on them. It's also frustrating because I know how much better something COULD taste with either of those added.

[Spracne]

You think going gluten free and dairy free is helping too?  I know I feel a ton better when I eat that way but damn it's hard.

Yeah I think so, it's frustrating not really knowing if that's a trigger or not tho. Yes it is extremely hard, even ordering is hard because some stuff is just implied and not listed. An example being at a Mexican restaurant with a dish coming with rice and beans, it doesn't say it but the beans always have cheese on them. It's also frustrating because I know how much better something COULD taste with either of those added.

I know firsthand the difficulty of avoiding gluten while dining out. It's hidden seemingly everywhere.