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 have a scheduled Flex Sigmoidoscopy next month and the prep instructions stated to complete an enema 1-2 hours prior. How’s that gonna happen? The first time I ever had an enema was in the hospital and to be honest that is the only place I imagine where you get an enema professionally done in a sterile environment. But you can buy a freaking enema kit from Rite Aid?!?! and I read you can do it yourself!?!? That sounds all fine and dandy for others but not for me . . . even if I am capable of doing it myself, I really don’t want to. . . I REALLY don’t want to . . . I don’t want to do it at all.
I sent a message to my GI’s office asking if I could drink the nasty prep stuff the night before since my procedure is scheduled for 7:15am the next day. . My GI’s response, he thinks it’s best that I get an enema done the morning of, since my colon needs to be cleansed close in time to the procedure. I haven’t responded yet because I need advice . . What would you do in my situation? I’m about to cancel the procedure all together and go for the standard colonoscopy. Getting that enema was a traumatic experience for me in the hospital, it was humiliating and painful at the same time. I don’t wanna get it done! sighs . . . I don’t want to get used to this . . . .
I’m not a mom, but hope to become a mother one day. However, I started thinking how hard it can be to have children and be chronically ill. I barely have the energy to get through the day and it’s just me. I can’t image working an 8-hour day and coming home to a family. How do you have the energy? How do you get by not only paying for your medical bills, but taking care of your family too? I can’t imagine doing that right now in my life, but mothers do it every day, even those who are chronically ill. I found this article To the Mom Living With Chronic Illness Who Feels Inadequate It gave me great insight of being a mom that’s chronically ill and thought I should share with you guys. My favorite passage of the article . .
“Most importantly your children don’t know you are sick. Not really. Sure, you tell them. I did. To explain why mommy can’t take them to the park today or why mommy is on the couch again. They may even complain about your illness getting in the way of things they want to do. Children are great at playing the guilt card. But they don’t really see you as sick. They see you as MOMMY. MOMMY who may be sick sometimes, but MOMMY. And that makes you the most important person in the world to them and they love you for it. No matter what. So although you may think they see you as sick mommy, when they see you, all they see is L-O-V-E.” – Sharilynn Battaglia
I received two responses to the stern message I sent to my GI’s office. The first response was from the PA who stated, I have forwarded your concerns to Dr. F. and he will see you from now on for treatment. Thank you!! No offense to PAs out there, but I wasn’t paying money to see a PA. Then I received two responses from my GI, and he started the first message soo well!! “Hi Crystal”, thanks for spelling my name wrong! lol But I can’t be mad, when I was speaking with my insurance company I said his first name was Steven, I was corrected. It’s bad when you don’t know your GI’s first name, that’s a problem!! In the message he continued to talk about how he never disagreed with the GI in the hospital that stated I have crohn’s (lies), and all this information that I never heard from him that was all crohn’s related. When I asked him multiple times in the past about which IBD I have he could never say. But push come to shove, all the meds i’ve been on for the past 9 months have been for UC, so I understood his point that Crohn’s is most likely since those medications haven’t worked.
Then out of nowhere! He wanted me to come to the office to see him the next day ! I could not believe that my GI was finally making time to see little ole me. Unfortunately, I am unable to drop everything to see him so I told him how I cannot come to the office until November because my schedule is not flexible due to my 90 day probation at the new job. And honestly I didn’t feel bad telling him that. When I had the time and was VERY flexible, after my appointments were rescheduled twice, I finally go to the office and saw the PA instead of my GI. Obviously him and his staff didn’t care then, but now they do when I plan to spend my mone . . i mean time elsewhere . .
Either way, my Humira injections should be arriving next week and I’m ready to get started. This week was hard, could barely keep my eyes open at work and when I got home.
Remaining hopeful, taking one day a time.
The other day I decided to get a pizza from &pizza, my favorite pizza place in the whole entire world! lol So I had to drive a little out of the way, but it was worth it. On the highway as I was changing lanes, I heard a car beeping its horn right behind me. My first thought was, “where did you come from?!?!” I did not see his car at all and I assume he sped up when I changed lanes, but according to him I cut him off. As he’s hitting his horn, I throw up my hands like whatever, sorry . . . we didn’t hit each other and crash be thankful. . . . . .I quickly discovered he was a maniac. He decides to cut in front of me and slammed on his brakes as we’re both driving 60+ mph on the highway. Luckily I was paying attention and was able to slam on my breaks in time, but stupidly out of rage I chased after to him to get his tag number because I was for sure planning to call the police. Of course, I was unable to catch him in my corolla, so I didn’t get his tags 😦
He changed lanes and I slowed down thinking he finally “proved his point” and was moving on, then I noticed he got back into my lane and started to slow down, it was like he was waiting for me to catch up. . . . I was in fear for my life. I immediately changed lanes and got off the next exit and almost ran a red light. I was completely distraught, heart pounding, hands shaking, and stomach hurting all at the same time.
You always hear about crazy people with road rage, but to experience it, is the scariest thing I have ever encountered. I just don’t understand why people intentionally do evil things just because they had a bad day. Because of his foolishness something really bad could’ve happen, thankfully I’m okay other than my bad nerves. When I finally reached my destination, I sat in my car, closed my eyes and took deep breaths until my heart rate slowed and my stomach stopped hurting. I officially lost my appetite, but knew I would be hungry soon. I eventually got my pizza feeling no longer excited, just thankful I was alive and drove back to my apartment abiding all speed limits and staying in one lane.
Living and coping with this disease has been a constant daily struggle, but you never know when your time is up. I know I’m sick, but grateful to be alive!
Look at what I got in the mail! It is my ‘can’t wait’ card. I’m so grateful to have it, but hope to never use it. It is stored in my wallet, right behind my insurance card. I also need to create a medications list/card for my wallet too. I’ll admit I have more cards in my wallet relating to my health than a good ole credit card. It’s silly to think, but if my wallet was ever stolen I hope the person would feel so bad that they return it lol
I have an appointment with My GI on Monday. I am worried. Just realized I haven’t seen Aunt Flo in a while and according to my app, my period is 10 days late. I know for sure I’m not preggers . . . yeah I’m a little worried lol
Even though I have not been feeling well for the past 3 weeks, i cannot sit still, and have been bored out of my mind lately. New job is cool, but it is work. My life can’t just be work and sleep, but that’s been my “social life” for the past few months. I went to a local CCFA support group months ago, but was slightly turned off by the attendees. Everyone there was either too afraid or embarrassed to talk about their disease or were older and accepted their life will be forever miserable. I guess I can’t blame them, a few lived with J-pouches or have had the disease for 20+ years in and out of remission. Also, I found it odd how some stated only their immediate family knows about their disease, how alone they must feel? . . . which is probably the reason why they attended the support group. In the end, I left the group more pessimistic than optimistic and decided it was not a good fit for me.
The last good experience I had in regards to my IBD was the Take Steps walk in Baltimore this past June. A truly happy experience for everyone involved. I’ve decided to reach out to my local CCFA chapter and sign up for volunteer opportunities. It’s not only a way to spend my time doing something positive, but also the possibility of making new friends. This past year, I have had people either stop talking to me or treat me differently, like I’m fragile. It would be nice to be surrounded by people that can relate and are positive about the future. We shall see . .
Remaining hopeful and taking one day at a time 🙂