I’ve been feeling kind of down lately and my current flare up proves it. Stress is definitely a trigger for me and I almost had an accident a couple of days ago to prove it. Not really appealing at 31 years old but I digress lol
Whenever I’m down I’m not the most happy person to be around and I start to feel like I’m living in a fog and just frustrated with the world. Not really a pleasant feeling. I had a dream last night that featured my favorite uncle that passed away about 15 years ago. Wow . . didn’t realize it’s been so long. Growing up as an only child and raised by my single mother he was that one consistent positive, fun, male figure in my life until I was 16 when he passed. Since his death whenever I have a dream and he’s in it, I feel like it’s his way of saying hi. It might be silly to think so, but since it happens so rarely I almost vividly remember every dream I’ve seen him. I’m not the most religious person but I do believe in life after death and that we do have our own guardian angels. I have had an experience where I was crossing the street and I thought my friend was pushing me across, to look back and see my friend still on the other side of the street and the truck that almost hit me stopped. I was literally pushed and remember feeling fingers on my back, that more than anything convinced me that spirits exist.
So last night I had a dream and my uncle appeared, in past dreams I’ve never had a conversation with him, he was just talking to other family members, it was like a scene out of my life. For the first time in a dream I walked up to him and said “Hi, I miss you and if this is your way of saying hi, I thank you so much for doing this.” He just smiled and then I woke up. I cried for a good 10 minutes, it just seemed so real and I didn’t realize how much I’ve missed my uncle. 15 years later, I’ve realized losing a loved one is something you’ll never get over, but just learn how to live without them.
Even though I’ve been feeling down, I’m grateful to wake up and see another day. There are many days where life is so hard, especially when having good health is not always guaranteed, but life is also so very precious and its nice to know that I’m not always alone.
As always taking one day at a time and remaining hopeful.
When you tell someone you have a chronic illness what is the typical response? “Aww I’m soo sorry, but you don’t look sick?” “You look good and at least you’re skinny” have been common responses for me. I always felt the need to change the subject as soon as a person say , “but you look really good”. I always took that response as “Why are you complaining?” . . . . Maybe I’m being oversensitive, but its hard to connect with people that do not live with your illness. So the response of “well you look really good” is their way of being sympathetic because they can’t relate. Unlike a response of , “Wow I can’t imagine the pain you go through but thank you for sharing and if you ever need anything . . . . ”
I found the below video which I think perfectly illustrates the difference between empathy and sympathy, do you agree?
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.
I think I’m an amazing actress! For the past month I have been bleeding everyday, severe bloating often, severe fatigue, and insomnia but somehow I am able to commute and work 40 hours a week, all with a smile on my face. I should win an Oscar because I don’t believe the average person can do that. I’m surprised no one at the new job has asked if I’m okay, but I guess I use all the energy I have during the work day and pass out when I get home on my bad days.
I am no longer afraid of Humira, I now look forward to it! Anything to make me feel better. Trying to clean my room for the past month has been a struggle, the last time it was this messy was right before I was admitted. I just don’t have the energy. The other day I had to lay down after taking a shower, and last night I woke up around 3am still in my work clothes and laptop in my lap. Unfortunately, this is becoming a regular thing, I’m so exhausted.
I finally spoke with my Humira Ambassador, she seems really nice and helpful and sent me my Humira welcome package. When speaking with her she mentioned that I have Crohn’s Disease . . . I immediately corrected her and said, no I have UC . . . she responded by saying on the application my GI’s office submitted, they wrote down Crohn’s. I immediately rolled my eyes and barely paid attention to the rest of the conversation because I was slowly becoming frustrated. When I saw my GI briefly last month, he did mention crohn’s but i assumed he misspoke and confused me with another patient, I guess not. I sent an email to my GI’s office asking what is my diagnosis among other things, OF COURSE the PA responded and stated, I quote, “I completed your paper work with Dr. F. He felt your Colitis was more of a Crohn’s….” What the hell does that mean?!?!? I mean let’s continue to play this game of what illness does Krystal have today! I would appreciate it if he would say, your diagnosis cannot be determined at this time, but you have active IBD, I would respect him more for that. So out of frustration I responded back with the below message, a bit stern but I felt like it needed to be said. And when probation ends at the new job, my first request for leave will be to see a new GI.
I find it very surprising that Dr. F all of a sudden believes I have crohn’s disease, I think he might have me confused with another patient, which is definitely possible since prior to August 31 I have not seen him since I was discharged. In the hospital Dr. H stated that I have crohn’s, but Dr. F was quick to disagree. I guess I don’t understand how my diagnosis changes within months without any additional procedures since my stay in the hospital this past April. I understand that at this stage the treatment is probably the same for both conditions, but it is important for me to know what I have, or if Dr. F does not know, just tell me i’m undiagnosed with active IBD. I don’t like the idea of my GI guessing what I have, or changing my diagnosis every few months just because. I know my case is considered mild (is that still true?), but I have never had to take 10 pills a day or be admitted to a hospital ever before. My life has completely changed in the past 9 months and it would be nice if I didn’t feel like I’m the only one taking my illness seriously.
I sent an email last week to my GI updating him on my new symptom of joint pains, specifically in my knees and my hips. It’s getting harder to stand up from a sitting position in the past couple of weeks and today I woke up with aches in my legs, hips, and back. I know stress and fatigue are factors since I worked 10 hour days this week and have not been able to sleep all week. 4-6 hours of sleep is not enough. Anyway, their immediate response was for me to come in and see the physician assistant, I of course resisted due to my last experience with her smh lol Chaos at GI’s office part 2 But also, I had a scheduled follow-up with my GI on July 1st, I told them I can wait until then. Well, that all changed when I got a phone call from the GI’s office the next day stating they will have to reschedule my July 1st appointment . . . I rolled my eyes. I called back and now have an appointment scheduled for July 13th which is too far away for me.
I have been on prednisone (40 mg) daily since I was discharged from the hospital in late April and lately I think I’m experiencing bad side effects. In addition to joint pains, I have been experiencing insomnia, very anxious, irritability and moodiness. I almost got into an argument with a cashier at Giant because I had too many items in my cart for the express lane. I was so visibly upset that people stopped and looked and I quickly realized I needed to calm down. I moved to another lane lol When I woke up today my body was aching, felt like I ran a marathon yesterday when the most physical activity I have had in weeks was walking from my job to the parking garage across the street. I decided to call back and request an appointment with the PA anyway, but when I called the receptionist was very hesitant to book an appointment and asked about my symptoms. I responded, “I’ve been having joint pains specifically in both my knees and my hips” before I could finish my statement she said, “You need to see your primary physician, this is an office of Gastroenterologists” in the most condescending way . . .
I was dead silent. I was so disgusted and thinking of every way to call her out of her name. She said she was looking at my file, so if she was competent at her job she would’ve realized that this is not my first appointment with a GI. And . . . Oh I don’t know . . . maybe the list of meds that I was on, but obviously she didn’t care. As a side note, I saw my primary physician yesterday. She agreed with me that my symptoms could be possible effects of long-term steroid use and agreed that I should begin to wear off, but wanted me to follow-up with my GI. After a few seconds of dead silence she started speaking again, I immediately interrupted her and said, ” I would like to speak to a medical professional to know if these pains are associated with me being on prednisone for 3 months, and I have spoken with my primary physician and she told me to follow-up with my GI”. Her response was “oh well I can forward you to his voicemail and you can leave a message?”. I said, “Please do!”. . . I left a message and a few hours later I received a phone call from the GI’s office stating how my GI is out of office for the next 10 days but they will inform him about my symptoms and for me to please call again if they get worst. . . why didn’t they just say he is out of office?!?!?
After a very stressful week at work and feeling completely exhausted, I sat on my bed crying. I was sooo frustrated . . .
Going out tonight and will have a drink! Taking one day at a time . . .