Hello lovely readers,
It’s been well over a month since I have last posted. I know its been a long time and really I’ve tried taking a break from most social media because I just had too much going on at once. August flew by and I just needed some me time while I got everything sorted or at least starting to be sorted. So where shall we begin?
Well last time we had talked I had just been wrapping up my classes and was going to be off school for a month. I didn’t know how much I needed that until we got that time off. And boy did I need it. Not long after that I was whisked away on an adventure with my mom and childhood best friend along with her mom and grandma. We flew to Kelowna where we slept on beaches, ate delicious sea food, drank wine, and just enjoyed life. And I held a sugar glider. It was magical.
I really enjoyed that trip and it showed me that I can travel! I just need washrooms near by in case. It also showed me what my new limits of alcohol consumption is with this new adjustment doseage of methotrexate. A wine tour visiting 4 wineries was apparently too much….. I literally shit so much blood at one point, it was dripping down my leg. And OF COURSE the place we ate at was attached to a fancy shmancy hotel with key locked washrooms that had to be retrieved from the lobby receptionist. On my second run to the washroom I just let her know what was happening and she just left they key hanging around so I could just run and grab it instead of waiting for her. What a gem.
But I also enjoyed the trip because of the people. I think it makes such a huge difference. They were willing to slow things down, check in on me, be accommodating, and just understanding. My best friend has her own set of bowel problem so I enjoy that it isn’t awkward. I don’t feel embarrassed that I just spent 20 minutes in the washroom or I fart excessively. She gets it. And my mom and second mom/grandma are just gems who always want to make sure you are doing okay. How can you go wrong?
Once we came back it was all about preparing for my new transitions. This girl thought it would be a good idea that start a new job AND move out to live with her boyfriend all within a twoish week span. It would have been fine had my body been nice to me. Because OF COURSE I had to get a cold that was going around and would last over 2 weeks and of course my endometriosis had to flare up.
My bowels have finally been getting it together but my uterus is like “nah girl”. For my men around this may be TMI but I got my period 3 times in a month and a half. And not just a light spotting for a couple days. It was a full blown 7 days dam of blood kind of period 3 freaking times. I’m supposed to get my period every 3 months….
So I sat with my family doctor and it is assumed that my body was not properly absorbing my birth control, because much like food and water passes through your body quickly when you are in a flare with IBD, so does medication. So now we are awaiting my next cycle so I can try an IUD and pray that it makes me less crazy and hormonal and in less pain during my time of the month.
My specialist for my bowels was really happy on the upside. I seem to really be responding well to Remicade. My inflammation markers are the lowest they have ever been and my hemoglobin levels are great. What wasn’t so great was my iron level. I am well below the normal range and can definitely feel it in my energy levels.
But iron pills don’t settle well and make me feel gasy, bloated, and have diarrhea- which is a common side effect….
Between my endometriosis symptoms, the iron pills side effects, and my UC sometimes its hard to understand why one day I will feel like shit. You sit on the toilet going through your brain thinking “okay what did I do differently recently?” Did I eat something new, not eat at a certain time, not take my pills at a certain time, miss a pill, react to a pill/methotrexate? They just all start to blur together. So trying to explain what is a UC symptom to my doctor has also been a challenge.
But yeah that’s where we are at right now:
- Remicade is going well but I got put back on Cortiment (steroid) to help with my inflammation until my endo gets under control
- I moved out and am living with my boyfriend
- I have a new job
- I started school again this week
- I see my specialist again at the end of the month and a gyno at the beginning of October.
I’m not even going to get into the gyno stuff in this post because it really can take an entire post. Especially since I had recently done a pelvic ultrasound not too long ago and recieved the results that everything looked normal according to my family doctor and do not show signs of endometriosis???? So what is my body doing and why does it hate me? And why does everything hurt down there??? So for now it is to be continued.
Toodles my friends,
P.S. I love reading all of your e-mails. They make me feel all warm and fuzzy knowing that what I write has mattered to some of you. But it also makes me feel a little shitty that I have been slacking. So I will try to be better now that things are not really slowing down but a little less hectic. Also I’ve just been so tired and sick with that cold. Hopefully my iron will sort itself out.