Saw my primary physician (pp) yesterday and when I got on the scale I gasped. I am officially 20 pounds heavier than what I was a year ago . . . fascinating. . . crazy thing is that I can still fit my jeans, it’s a good thing they’re stretch jeans. It’s also nice that my big clothes fit again and a belt is no longer needed . . . sighs. In the past 2 weeks I have gained 6.5 pounds, crazy right?!? I have either been an eating machine or hold intense water weight. . . I’m sick of it. Would like to eat well and not be big as an elephant. However, with the colonoscopy next month, I’ll probably lose those 6.5 pounds, so that’s something to look forward to . . the little joys in my life!!
My hip and lower back are starting to ache again. I told my PP about it and stated it’s probably because I’m completely out of shape, but she took it a little too seriously and immediately gave me a referral for physical therapy. . . “bitch please!” was the look I gave her. How dumb is it to walk into physical therapy pain-free. The pain is not like the hip injury I had a year ago when it was painful to walk, It’s just aches here and there. When I got home I trashed the referral, because the one thing I’ve learned this year is that Health Care is a freaking business! Most of you are probably thinking, “Well duh!” lol but I have truly seen the game and tricks doctors play from my many doctor visits this year. It’s like going to a car dealership where there is a problem everywhere! I was actually at the dealership today and the one repair that I’ve putting off might have to be replaced sooner than later.
I was so proud of myself earlier today, finally paying of medical expenses and reducing my credit card debt, it was such a feeling of relief. I went to the car dealership this morning for regular maintenance and they tell me this needs to be done, blah blah . . . a total cost of $1400 . . . bitch please! I walked out only paying around $250 the bare minerals. But the repair that cost the most needs to be replaced like yesterday. It sucks my commute to work is horrid and I have to drive my car (which might not be the safest now). I plan to go to Jiffy Lube right after work tomorrow, so I will no longer be paranoid but unfortunately hike up the credit card debt again. My little Corolla just hit 90K and all hell is breaking loose. . . it sucks because this was supposed to be the year I would start saving for a new car. That all changed when I was diagnosed with IBD plus a hospital stay. I’m pretty sure I’ve paid at least $3K (thank god for health insurance) this year in medical expenses, but I can’t complain. It would’ve been a lot worst with multiple hospital stays and even surgery(s) . I guess this year has been easy as a crohnie . . .
So is this my life now? Always worrying about money which causes stress, which causes a flare up, which could lead to a hospital stay and expensive medical procedures? Is this the routine of my life? I just realized prior to Halloween, I don’t recall the last time i did something social, like a party or just being around a lot of people, it’s embarrassing to say in the last year of my 20’s . . . but this year has REALLY sucked! And now with my car woes. . . it just keeps pouring . . .
I’m really tired . . .
I saw my GI on Monday for my post hospital follow-up. I think my GI is a hard working man, he looked just as tired and stressed as i was or maybe because it was an 8:00 am appointment? 🙂 Anyway, he reviewed my clinical summary from the hospital and was surprised that the hospital GI removed Apriso from my medications. Since it was the only mesalamine medication I was taking, he stated we will need to put you back on that medication. I immediately asked why since the GI at the hospital stated it didn’t work. He responded, “I think you have Ulcerative Colitis, and you’re currently taking 40mg of prednisone, I want to get you off the prednisone sooner than later. We need to do a trial and error and find your long term drug.” So far 2 out of 3 say I have UC , I feel like I’m getting closer to a confirmed diagnosis, yay!!
Then we talked about future treatment. He brought up Humira and Remicade again, but stated he wants to try an immune modulator instead. In the meantime he wants me to get tested for Hepatitis and see me every week?!?! I said “What!” He said we have to tackle this head on, I don’t want you to go back to the hospital.
Sighs . . it’s bittersweet. I’m fortunate to have a GI that cares, but my PTO hours are getting low. And I can’t afford these co-pays, but I am getting closer to my out of pocket maximum with Cigna!! So once I hit that amount it should be easier? *fingers crossed*
As always I remain hopeful, taking one day at a time 🙂
I cannot believe its been a week since last Sunday when I was discharged from the hospital. It was not until last Thursday that I started to feel normal again. The medications I’m currently taking are working and hopefully will continue to work *fingers crossed*. The one thing I’ve learned about being in the hospital is that after you’re discharged everyone wants to talk about it. It’s totally understandable and I am grateful that so many care, I’m not complaining but, it can be exhausting. I find it a lot easier to write about it. Or it’s easier to talk to others that live with an illness because its normal to talk about multiple prescriptions, side effects, and cost without receiving that look of shock, sympathy or sadness. This past week I googled the differences between IBD and IBS since I knew it would be the most popular question, and luckily there are many articles to prepare you for “that conversation”.
During these conversations the most popular response was “Well you look really good!”, you don’t look sick, which I say thank you and don’t feel the need to tell people that I’ve barely eaten anything in the past few days. Then hearing my grandmother say, “i hope you don’t die from this” and I responded, “No I should be fine, it’s not fatal thankfully” lol Or “This disease has really taken over your life”, which I totally agree. It’s been 5 months since my diagnosis and I’ll admit I don’t recognize myself anymore. I’ve always been a quiet person, but lately I feel like I’m not “present”, can’t remember anything, brain fog, extreme fatigue . . . I feel like I have aged. Someone told me this weekend, “You’re too young to have the body of an old person”. My only response was, “it is what it is!”, I do not have control.
When I was first diagnosed I’ll never forget when someone said how a family member’s dog has colitis, is it similar? I did know a little about Canine IBD, but didn’t really appreciate being compared to a dog lol. Ugh . . . maybe I’m just too sensitive ;). I also learned early on to not start “the conversation” with “I have a disease! . . ” I’ll never forget how their eyes got wide and they slightly moved away like i was contagious, not joking . . . I had to bite my cheeks to stop myself from laughing, but I guess I might have reacted the same way, can’t be mad. In both cases their intentions were good and they genuinely care, it’s just funny. I had “the conversation” with my roommate last night, she was more distraught than I was. I ended the conversation very awkwardly by saying, “I’m gonna go to bed now” lol . . .I refuse to cry anymore over this disease.
Since my current medications are working, I plan to use public transportation for the first time in weeks to visit an old friend in DC. I’m nervous, but i know I will be fine. Can’t allow my anxiety to make me fearful of everything. And prior to my meetup, I will review my notes on “the conversation” about my IBD which is now like a memorized script.
I remain hopeful, taking one day at a time 🙂
I was finally discharged yesterday after almost 5 days in the hospital. I’m glad I left when I did for my psyche, because I had not reached cabin fever yet, and was still slightly uncomfortable “living” in a hospital. I got along with the nurses and the food staff, helped out new patients in getting their toiletries, and was very comfortable walking around in a gown while pushing my IV . It was becoming a normal routine, it was scary. My first ever hospital stay was an adventure.
The ER is horrible, and I believe the nurses looked just as miserable as I felt. When I “checked-in” I had to tell the nurse at the front desk why I was there and my symptoms. I told her I have Inflammatory Bowel Disease and going through a bad flare-up. I have bloody stools, cramps, on several medications including prednisone, and my GI told me to come. She gave me my papers and told me to sit in the waiting area. As I sat down, I immediately became irritated when I read what the nurse wrote “On prednisone, IBS” . . . . . I didn’t realize that irritable/inflammatory and syndrome/disease were the same words??!?! . . . . .I was sooo mad and felt disrespected, I was very surprised by my reaction. So when they called me back for an EKG and blood and urine samples, I quickly corrected them and stated I have IBD not IBS, they are NOT the same!
I was sent back to the waiting area and sat for another 3 hours and quickly noticed how crowded and uncomfortable the ER really is by being surrounded by crying babies and foul smells coming from the 1 restroom! Thank goodness I barely ate that day and did not need to use the restroom. When my patience was wearing thin and I started to think they forgot about me, I was finally called back. They put an IV in my right arm (worst place to put it!) and then told me to change into a gown. An hour later I saw the ER doctor, she tells me my blood work looks fine and we can send you home tonight. I looked at her like she was crazy and immediately thought, I did not waste 5 hours of my day in this horrible ER to be sent home because my blood looks good!! In my best attempt in a calm voice I told her, “I have called out sick this week at work, barely worked a half day today, and if you send me home tonight I’ll probably be back here tomorrow, so I would suggest that you get in contact with my GI since he told me to come to the hospital, so please check, thank you!” 45 minutes later she returned and told me I was being admitted. She got in contact with my GI who told her that I needed to be admitted because we need to find out why the meds are not working. I had never been so excited to be admitted, I was just glad to no longer be in the ER.
Unfortunately, after almost 5 days in the hospital and seeing 3 different GIs, none could agree on my diagnosis. After a CT scan, scopy procedure which included my first experience with an enema, HORRIBLE! and my blood being drawn everyday, the only thing that all 3 can agree on is that I have active Inflammatory Bowel Disease and that’s its not severe. It’s frustrating to still not know, but my symptoms have gone away, so I’m happy. My pill intake has decreased from 14 to 8 pills, and now taking 40mg of prednisone daily. . . I’ll take it. I have a follow-up appointment with my GI in two weeks and I am very curious to know what will be the next step in my treatment.
IBD is a crazy disease! My case is not considered severe, but it put me in the hospital for 5 days?!?!? That’s kinda crazy.
I remain hopeful, and taking one day at a time 🙂