Med Free? . . .

It’s been a couple of weeks since I saw my new GI and he was perplexed. He said to me, I do not think a person with Crohn’s disease can have their colon completely healed after a year of treatment with Humira. I don’t think you have Crohn’s . . . . . WEll, WHAT THE HELL IS IT?!?! I silently screamed! He didn’t deserve my anger, he was not the person that  diagnosed me and I appreciate him making the effort to discover what is wrong with me. I plan to call his office this week to make sure he has received all my test/lab results from the past two years because I deserve to know what is my diagnosis. He even questioned why I was put on Humira  . . .  . .woah . . . woah . . . pause . . .  prior to Humira I was popping steroids like it was candy in order for bloody stools to stop. I was living with a moon face and could barely sleep, so when I started Humira many of those symptoms disappeared in the first few months and I am forever grateful. But then my GI made a good point, he said “I think you were on Humira for too long, the last thing I want is for you to be over medicated”. This past year was not glamorous, I  had three bacterial infections that stopped me in my tracks, not used to getting that sick that often. Then he said, “So what do you think about stopping Humira?” I said, “okay let’s try it”.

I initially hesitated at the thought of stopping Humira, why would I want to stop a drug that made me better? However, Humira can do its own damage, it has many risks and if I do not need to be on it, I will gladly stop. It’s been a month with no Humria injections for the first time in over a year . . and I am doing okay so far. Actually the only medications I’m taking now is, Omeprazole for GERD, birth control and multi-vitamins, crazy right?!? In 2015 there was a point when I was taking 14 pills a day, I am blessed.

I am trying to enjoy this time of true remission and have been a little reckless, had my first beer in 2.5 years this past Superbowl Sunday, it was delicious but regretted it all day Monday, I think I was hungover . . lol I haven’t been eating that healthy  which is something I’m working on, been hella stressed because of this job. The last time I was this stressed out was before I was diagnosed with IBD, as a way to cope I was jogging about 6 miles a week . . I am no where near that fitness level now, but this March I will be back in a gym somewhere.

While my GI is figuring out what exactly is going on with me,  I’m gonna enjoy  this “healthy time” and try not to stress myself back into a flare. Wish me luck!

Tonsils Takedown Round 2!

It’s round 2, I’m backed against the ropes, bruised and exhausted . . . sighs . .

Last Wednesday I felt so much better that I stupidly went to work for a half day, but I felt good! Slept well, throat wasn’t sore, I was happy. When I left work, I went to the grocery store, cooked a pot-roast with potatoes and cleaned my kitchen, by 9pm I was tired. As I sat on the couch watching TV I started itching; immediately thinking it was stress and I thought it would stop soon. An hour later, I’m scratching my chin so intensely that the left side of my face is red. For those of you that don’t know what I look like, I am a dark skin black female so for my face to  be red . . . that’s a problem. So since it was now after 10pm and I was itching all over, I called Urgent Care and told them I believe I am having an allergic reaction. They told me to stop taking the Augmentin and take a benadryl if that doesn’t work, come back immediately . After I got off the phone I frantically searched my apartment for allergy meds, but could not find any!  Once i realized I was SOL it was 11:15pm, the skin around my eyes and lips were burning, so I went to the nearby Safeway that claims to stay open until midnight, but the doors were locked. I got back in my car and drove around looking for a 24- hour something! About 2 miles away I found a  24-hour CVS, thank god! Popped a benadryl, and was able to finally sleep closer to 1am . . . .obviously I didn’t go to work the next day.

Thursday morning I went back to Urgent Care and they prescribed a new antibiotic something called “Z-packs” for short. But I didn’t trust it . . .. It will be a year next month that I’ve been living in VA and I have yet to find  a Primary Care Physician (PCP) , which is kind of a good thing, it shows I haven’t been that sick. My PCP is in Maryland about a 35 min drive away without traffic. After I left Urgent Care I called my PCP and asked if I could see her soon, they said sure and I was able to get an appointment that day at 3pm. I tell my PCP of my life experiences in the past few days and she jokes with me saying, “See! you should have came here first, those people in Urgent Care don’t know what they’re doing!” . . . I laughed and said, “Well you guys were not open on Sunday when I could barely swallow” lol. After joking, she said lets take a look at your throat, that smile immediately disappeared. “Krystal your tonsils are still severely swollen, you have to take that new antibiotic they prescribed with a benadryl just in case you might have an allergic reaction.  And I highly suggest you go see the ENT.

Great! . . .  freaking wonderful!! . . . .

She took a few swabs of my tonsils and blood work and I’m currently awaiting the results. Due to the horrible traffic since it is the DMV and a day before the presidential inauguration, it took me 2.5 hours to get to my local pharmacy back in Virginia. By  the time I arrived, my throat was severely swollen I could barely talk.

Today was the last day of taking the antibiotics and my tonsils are still huge and my throat still feels swollen. I cannot afford any additional health expenses. I’m still paying off the root canal and crown that was barely covered by my dental insurance, a $2100 bill. If tonsil removal surgery is not 100% covered, I’m not doing it. I see my PCP again on Friday and if the swelling does not go down by then and tonsils are still infected . . . I just might cry . . . lol

Life is so crazy! My tummywoes are finally calm and I’m seeing my GI this week to discuss possibly going off Humira. But in the past few months other parts of my body  are just falling apart . 2017 has been something else already!! smh

 

The fear of going under . . .

I just had a good cry, I should sleep very well tonight!  I was watching a show called Code Black, thinking it was a typical ER drama I had it on my TV as background noise to tune out Ms. Godzilla that lives upstairs (can’t wait until this lease ends!). As I was barely paying attention to the main story in this episode; a young cop having an explosive lodged in her leg, for some reason the story of the woman who went to the ER alone because she wasn’t feeling well caught my attention. She didn’t look ill, but why would she be in the ER? I thought to myself, I can relate! The day I went to the ER I remember my outfit vividly cause I thought it was cute and it was one of my best hair days lol, I didn’t look sickly at all. Minutes later she’s in a hospital bed stating it was difficult to breathe and fussing with her brother. Her brother asked if she was really sick, she responded I wouldn’t be here if I wasn’t and then she mentioned it was her Lupus. . . I slowly put my laptop to the side and gave the show my full attention. It’s rare when television shows discuss invisible illnesses such as autoimmune diseases so I was weirdly excited.

The episode returned back to her story by discussing her CT Scan results. The doctors stated she had a Pulmonary Emboli?!? I think. The blood clot on her lung was so big they had to rush her to surgery. The fascinating thing about this episode is that woman with an explosive bullet in her leg survived, but not this woman with Lupus. She died . . . and I started crying. I don’t know how realistic this story could be but, she went to the hospital with a chronic illness and she knew something was seriously wrong. It’s a scary feeling right? When I went to the ER I knew I could no longer eat anything, but I didn’t really think of the risks with medical procedures, but anything can happen whenever you go under . .

I have always hated hospitals, my favorite uncle died in a hospital when I was a teenager. Being in a hospital have always been a fear of mine ever since his passing.  When I  had to get my gallbladder removed at 25 I was terrified. I remember asking  my co-worker who was a minister to say a prayer for me. We were literally praying in her office. Before my first colonoscopy I said a prayer, when I was in the hospital I prayed hoping that, that night was my last night in the hospital. Every time I go under I say a prayer, you just never know and it’s odd I’m no longer terrified, I just hope for the best. When you have a chronic illness having multiple medical procedures become routine unfortunately.

I finally sought a 2nd opinion, found a GI in my new home state of Virginia (even though I’ve been living here for 8 months now). He immediately didn’t understand why I was taking Apriso and Humira, and told me to stop the Apriso. Thank God! I had stopped taking it weeks ago and it saves me $25  a month. But of course he wants to do a colonoscopy, got it scheduled for Dec. 29th. Third year in a row I’m having this procedure done before the New Year, it’s becoming a tradition. Since I had a flare up a couple of months ago when I’ve been on Humira for over a year, he wants to know why . . sighs . . once again I’m going under . . and plan to say a little prayer and hope for the best.

Deja Vu . . .

I left work yesterday because of stomach pains, good ole cramps.  Bleeding has been back and looks like it won’t go away until I start some new meds or go back to my dear friend Prednisone! The bleeding came back shortly after I weaned off the drug . . I think my GI lied to me when he said I was in remission. . . Is it normal for it be so short lived? 1 month after colonoscopy symptoms came back . . . sighs . . Exactly a year ago I was experiencing stomach cramps and other similar symptoms. Those symptoms eventually got worse during the month of March which led to my first ever hospital stay last April. April 2015 will always be a permanent memory in time.  I hope I won’t be going back to the hospital anytime soon.

I guess my Crohn’s is definitely moderate-severe, I’m no longer considered a mild case. Been on Humira for the past 5 months has not been my saving grace since it worked 3 out of the 5 months. So what’s the next step? More Humira shots? Or the forbidden word in my vocabulary, Remicade! I’ve heard Remicade has done amazing things and my GI has mentioned it more than once,  but I don’t like the idea of sitting in the hospital for 3-4 hours hooked to an IV, sounds like chemo therapy. Will I be in a room with cancer patients? . . gees, how depressing. I’ll find out for sure the next steps when I see my GI in two weeks. The conversation with my GI will probably sound like this, “Krystal why didn’t you inform me as soon as the bleeding started? You should have came to see me.” How’s the job?  Are you stressed? You better not be stressed, I’ve told you, you have to reduce your stress”. My responses will probably be, “I’m sorry, you’re right I just don’t want any new meds. Job is crappy and I’m beyond stressed, but I moved closer to reduce the stress of commuting . .  can I get points for that?!”

As always, living one day at a time and remaining hopeful.

I hate winter . . .

I’m a summer baby and love warm weather, and love it even more as I get older because it never causes hazardous conditions. Ever since I got into my accident I refuse to drive when there is any possibility of icy roads even when it comes to my health. I ran out of my Apriso pills yesterday and had every intention to refill the prescription but oh golly gee, I actually had a date for Valentine’s day, and it lasted longer than I expected, which was a good thing (will discuss in more detail in a later post). But sucked because the pharmacy closes early on Sundays, and its been snowing all day. As a result I have felt more tired in the past day, but i think it’s mostly due to my hectic, stressful lifestyle lately. Conference at my job finally ended and I can’t even relax, why is that?!? . . I’m still trying to figure that out myself. And I’m moving exactly a week from today and haven’t packed, I just have too much going on and no energy. As I continue to lay in my bed, and dreading going to work tomorrow, I’m reflecting on my recent lifestyle choices. I have been mentally and physically exhausted for the past two months, how much longer can I keep this up?

Life is already difficult, adding a chronic illness to it . . . just sucks