Humira feels like a weekly reminder that I have an incurable autoimmune disease. That this is what my life is like now. That this is what I have to look forward to. And at times it’s depressing. I wish I didn’t have to be on medications but I know that this medication is my best option right now.
I’m not one of those people who’s goal is to get into remission and go off of my medications. My medications are the reason why I’m in remission. I don’t what to know what would happen if I had to go off of the Humira. I’m sure the results would not be good though. I also don’t want to risk building up antibodies to this medication. Once that happens I won’t be able to go back on it and that’s not work the risk to me.
It’s hard though to deal with the weekly shot. For me it hurts a lot. I can’t wait for Humira to have a sting free option. Some people who take this medication don’t feel that much of a sting but for some reason I do.
Do you have any medications you dislike? Why do you dislike it? Do you have any medications that you do like?
It’s so daunting to think of. The fact that I’m going to change my diet. But I’m tired of not feeling well. And food is one of the things that I can control.
I’m getting tired of not feeling well. And my doctors are kind of meh 🤷♂️, when it comes to what to do with me. I’m symptomatic, but I’m not in a flare, and my blood work is normal. So, what can you do? My rheumatologist wants my biologic to stay the same. And I’m currently on 3mg of budesonide. But I’m sure once it’s all gone, I’ll be done with it.
Which only leaves diet. Well, and exercise(yoga for me!). Along with seeing my chiropractor and acupuncturist. This past weekend when I was seeing my chiropractor and my acupuncturist they both mentioned diet to me when I told them what was going on. My body is having a lot of immune responses right now, and is very unhappy.
So now, I’m trying to find out what I can about the Autoimmune Protocol(AIP). And the Paleo diet. And it’s all a bit overwhelming and daunting. I’m hoping to get another book that helps to explain it more and what I need to do. Along with keeping a food journal again.
I know that my food tolerances have changed since the last time I did a food journal because I can eat cucumbers again. Which is weird, I know. But it’ll be good for me to figure out what foods I can eat and what I can’t.
The AIP will be slightly more complicated because I also suffer from fructose malabsorption. Which means I don’t process fructose very well. Fructose is found in a lot of plants, veggies and fruits so I will really have to double check everything when I start up this diet.
And that is where meal planning comes into play. I found a meal plan layout that I like. And I found out about a meal planning website that has a lot of the AIP meals on it and it will help you schedule everything. But it’s a paid service and I’m still deciding if I want to try it or not. I really wish they had a 7 day trail or something.
The action of deliberately arousing public fear or alarm about a particular issue.
Now I don’t see it as fearmongering. It’s the honest truth that if someone with an incurable disease loses their health insurance could have a very hard life or possibly die of complications. I’ve seen people with IBD lose their health insurance and end up in the hospital multiple times due to flares and complications of IBD. Many patients need medications to stay out of the hospital to try and keep their IBD under control. And when you no longer have access to medications, things tend to not go well.
Now, my dad got accused of fearmongering after he said that he’s mad at Republicans for potentially getting rid of the ACA because I could have a very hard life or potentially die if I ever lose my health insurance. Which could very well happen. And with all of the uncertainty around healthcare and what some Republicans in office have said that they want to do it’s a real concern of mine, my husband, and my family.
What would happen to me if I got laid off and couldn’t get rehired again? What if my husbands insurance took too long to kick in or wouldn’t let me enroll until open enrollment? Or I can’t work anymore and have to go on disability?
I need my medications to stay functioning. And my medications are extremely expensive without health insurance. There is no way I would be able to afford then without it. And I am stuck with biologics.
This person my dad was talking to also said I needed to go get a job with insurance and stop expecting the government to take care of me. And I hate it when people make assumptions like this. I have a good job that has health insurance. And I will keep working until I can’t anymore. I also don’t expect the government to hold my hand and take care of everything. I want a fighting chance to LIVE. And that fighting chance to live is what I expect out of the government.
What I also don’t get is what is so fucking wrong with wanting the government to take care of the least of us? The people who need healthcare? But I have yet to hear of a way to convince someone to actually care about other people.
I had an appointment with my GI on August 30th. I’m glad that they were able to get me in sooner than November! We really needed to talk about what’s been going on. It’s hard to do that over the phone at times when I have to go through Dr. M’s triage nurse.
As of right now, I have a colonoscopy scheduled for October 12th. This time, I have to prep for it in a hotel, though. Which I’ve never done before. I have gotten some tips from my fellow IBDers on Twitter so I will make sure to share those things with you when the times comes!
I’m not particularly excited about this colonoscopy. A month ago I was pretty dead set on not having one but I’ve resided to the fact that I probably need one. I haven’t had a scope since May of 2014. And Dr. M has yet to do a colonoscopy on me. So it’ll be good to give him an idea of what my colon looks like.
I will be staying on prednisone for now. I got to go down to 30mg from 40mg! Which is nice. I may eventually switch over to budesonide. I think we’re waiting for my labs to come back before we decide that.
The Prometheus antibody test will be done on September 10th. They’re actually having a mobile lab come to my house to take my blood. Which is pretty neat. As of right now, my insurance doesn’t want to pay for the test. They think it’s just “investigative” and that we won’t get any good information out of it. But, don’t you want to know how well it’s working? Although, at the same time. It would actually be cheaper for me for the test to be denied. I’d have to pay more if the insurance did decide to help pay for it. Because of how my insurance plan works.
So, we will see what happens. And I will continue fighting through this abdominal and joint pain that I’m having. These lab results can’t come back fast enough!
I had my first Rheumatologist appointment on August 18th. I decided that I probably needed to go see one in July. My joint pain had gotten to the point where it’s been unbearable some days. So last month I went to the day clinic at my doctor’s office and had a bunch of labs ran along with some hand X-rays to see what was going on. Everything came back good(except for my white blood cell count, but my IBD had been flaring so…). I got a referral to see a Rheumatologist but I was not able to see him until the 18th because I was out of town for work. I was not particularly happy that I had to put my health on hold but I did get to see my family while I was gone which was a plus!
I really like my Rheumatologist(Dr. C) a lot. He asked me a lot of questions and listened to everything that I had to say. There’s a difference between listening and listening. And he really listened. That can make a world of difference with a doctor. At least to me.
He seemed really concerned with everything that has been going on with me. Since last December either my joints, IND Colitis or Psoriasis has been acting up(sometimes all at the same time) and he said that it’s pretty obvious to him that I need to switch biologics. And I agree with him. I don’t feel that Humira is really working anymore. My immune system is always attacking something it seems like. Every time I have a flare-up of my IND Colitis I tell Dr. M this and so far nothing has been done about it.
Dr. C is going to be sending my GI(Dr. M) my patient summary report from my visit and tell him that I have arthritis due to poorly managed IBD. So it’ll be interesting to see what happens. Because Dr. M had wanted to do a colonoscopy when I had to start my third round(yes, THIRD!) of prednisone from my flare that started up mid-July. I told them no, that I didn’t think that the Humira is working and that I wanted an antibody test. So he came back and said that we could wait for the colonoscopy and that he wanted to see me. The soonest that they can get me in is November 22nd! Which is a ridiculously LONG time!
When I explained all of this to Dr. C and he didn’t seem very happy. I don’t know when I’m coming off of the prednisone(still on 40mg) and I don’t know what the exact plan is. Dr. C asked me why I didn’t want to do the colonoscopy and I told him that I felt like it was a waste of my time and money when it seems pretty obvious that the Humira is no longer working. I may eventually still have to get one but we will see what happens. I have to call my GI nurse on the 22nd and see what the plan is.
Dr. C doesn’t think I have Lyme’s Disease or drug induced Lupus. He’s running some more blood work and I got some hip X-rays done. I’m hoping to have these results this week sometime. Right now my diagnosis is arthritis due to Ulcerative Colitis. Can’t say Indeterminate Colitis because there isn’t a diagnostic code for that! Dr. C doesn’t feel that the antibody test for the Humira is worth it right now. It could come back positive for antibodies and I’d need to switch medications. Or it could come back negative and I’d still need to switch medications because it’s pretty obvious from a clinical standpoint that the Humira is no longer working all that well. And it’s apparently between $200-$800 to run the test and I already have enough(and more coming) in medical bills.
Dr. C inspected pretty much all of my joints and checked my flexibility. I haven’t lost any range of motion which is good. And there weren’t any joints that were obviously red and swollen at the time. He also said he’s going to let Dr. M decide my next course of treatment since he’s the one handling my biologics for IBD. I really hope that Dr. M getting my notes from Dr. C will help him get into gear about changing my medication. I’m tired of being in pain just about every day.
I have a follow up in six weeks with Dr. C. I’m not sure what all we will be going over that visit but hopefully I’ll have been able to make some progress on getting my medication changed. I’m not sure if Dr. C will become one of my regular doctors or not. I think it’ll all depend on what the blood work says.
At the end of my visit, Dr. C asked me if I was ok and I ended up having a bit of a meltdown. At this point, I’m pretty frustrated with Dr. M and how my IBD is being managed. Before now, things have been fine with him. I’m not sure what changed this flare but I’m ready for things to get better. Right now I’m not planning on switching doctors. I already drive 2.5 hrs to see mine and I don’t want to go back to the GI office in town. We will see how the rest of the year goes before I decide what I’m doing.
Dr. C also said that he wishes he could cure all of us so that we didn’t have to live with chronic illnesses. That made me like him more. It’s not often that I hear a doctor say that.