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.
I’m doing this Friday Reads a little differently. I read this book a few weeks ago but I was out of town for work when I read it and I did not make time to blog about it!
Feyre survived Amarantha’s clutches to return to the Spring Court—but at a steep cost. Though she now has the powers of the High Fae, her heart remains human, and it can’t forget the terrible deeds she performed to save Tamlin’s people.
Nor has Feyre forgotten her bargain with Rhysand, High Lord of the feared Night Court. As Feyre navigates its dark web of politics, passion, and dazzling power, a greater evil looms—and she might be key to stopping it. But only if she can harness her harrowing gifts, heal her fractured soul, and decide how she wishes to shape her future—and the future of a world cleaved in two.
A Court of Mist and Fury was an amazing book. It’s the second installment of A Court of Thorns and Roses and I can’t wait until the third book comes out! I’m not sure if I can survive until May when it’s scheduled to be published. I want to know SO BADLY what’s going to happen. The plot twist at the end with Feyre, Tamlin, Rhysand and Feyre’s family was INSANE. Sarah J Maas really does know how to create a cliffhanger!
If you like fantasy books I definitely recommend this series! It’s amazing, keeps your interest and you want to keep coming back for more.
One activity that I like to do during the summer is go camping. It’s not something that I get to do as often as I like, but it’s something that I do love to do with my Fiance. It can take a bit of research to find the right camp site. And some work to get everything packed to go, but for me it’s worth it.
I don’t recommend going camping while you’re flaring. That could potentially end very badly! I definitely want people to have good experiences while camping. You don’t want a flare to overshadow that.
There are a few different things to think about when going camping. Like whether you need running water or not. Or whether you want to go tent camping, or rent a cabin somewhere. How far out of town you want to go. Or, even if you just want to camp in your backyard(nothing wrong with that!)! And what kind of activities you want to do while camping. Now whether that’s fishing, or reading, or hiking, etc. It’s something that is important to figure out while deciding where you want to go.
Some of my favorite activities while camping are:
Taking my dogs swimming
Taking my dogs on a walk
Playing board games
I have yet to go swimming while camping. And I’m not that big into fishing. But I do enjoy a good book. We also take the Nintendo 3DS camping with us. My fiance likes to sit by the camp fire and play some video games when things are starting to wind down for the day. I also don’t mind playing some Pokémon while camping😉 Another important thing to remember, is that camping is what you make it. Find activities that you like to do, and do them while camping. There is no right or wrong way to camp in my opinion!
I’ve been camping at both “dry” campground and ones that have running water. So far I do not have a preference as to what we stay at. As long as it has some sort of bathroom I’m good. It may be a good idea to bring your own toilet paper or wet wipes. You never know what quality of TP will be available at some of these campgrounds!
Every time I’ve gone camping, it’s been tent camping. We’re talking about some day getting a popup camper, but that is a few years down the road! We’re also thinking about getting a hammock this year. I think that would be very relaxing to lay in while reading!
Here are a few things that I try to always pack in my bag:
I really feel like camping is something that people with IBD can do. It just takes some planning! If you have any questions please feel free to contact me(KenzieIBD@gmail.com).
What are some of your favorite activities to do while camping?
This summer Sarah, Katelyn, and I are running a new campaign on Twitter for Girls With Guts. It’s called Love Your Summer. It is a way for people with IBD to share what their fun summer activities are. Now whether it’s camping, reading a book, walking your dog, or hanging out with your cat feel free to tag it with the #GWGLoveYourSummer tag! We will try to retweet your picture or status on the GWG Twitter page.
During this campaign, we will have some weekly topics that we will be posting about on the GWG Twitter page so keep an eye out for them! This week it is about hydration and IBD!
We wanted to do this to show everyone that you can still have fun summer activities, even if you’re limited in what you can do. A few of my favorite summer activities are: