Chronic Illness Life: Four Months Later
Between life and my health, I haven’t blogged on here in about four months. That is insane to me when I think about how much I used to write when I first started sharing my story and experiences about life with a chronic, invisible illness.
Between October and early February, I have been trying to move forward in a lot of areas in my life. The health part is what I am going to talk about today though
New Migraine Course
I became a patient at one of the best headache clinics in the country around the time I last updated this site. As a side note, my Instagram , Twitter and Facebook accounts are where I do a lot of my updating since I can be fairly quick about it when I am not in the right frame of mind to actually talk about what I am going through in depth.
At the initial consultation, I met with a nurse, physician for my head, as well as a psychologist. I loved the idea of a real team approach since as most of you know, migraines can be extremely tough to figure out since the cause is not fully understood. I liked the doctor I saw and felt like the people there really understood the whole picture behind my pain and my life in general. It was for that reason that I agreed to something I never thought I would… being inpatient for a week to begin the process of improving my quality of life.
I couldn’t stand not only having my inflammatory bowel disease to deal with, but living with a constant migraine 24/7. I knew I wouldn’t be able to get through life much longer if I didn’t do something. And that “something” couldn’t just be more trial and error with medications. It was established that they were not going to give me any medications in pill form as I don’t digest them properly. I liked that I wasn’t just going to be thrown meds to try since I have been doing that since the age of 16 when I first sought treatment for my migraines.
This was different and even though I had been hospitalized a couple of times for this reason, the comprehensive treatment I was going to be receiving was night and day from anything I had ever gone through before. That gave me hope.
Long story short, I mentally couldn’t handle being inpatient. I had a pic line in but they were still going to be doing blood draws every morning. I was going to be getting Hepburn shots every 8 hours. They had no IV meds for me that weren’t their standard ones. I went in there thinking that given the five hour assessment I went through initially, I would be treated like an individual and not just given standard medications and refused things that weren’t the “norm.”
I had to leave. I could feel how wrong everything was. I just… couldn’t…
I honestly felt like a failure for a while because I couldn’t go through the seven day inpatient stay that is usually necessary for this new pain management plan to be successful. The doctors at the clinic did do everything they could to assure me certain things that went on while I was there would be rectified and did still maintain that they felt inpatient was the best thing for me.
At this point, I felt like everything I had been trying to suppress for so long about the mental anguish that goes on while being inpatient had been drudged up. Emotionally, I felt awful. I was having random flashbacks, barely sleeping because every time I would let my guard down I would have some horrific dream about hospitals and recovery rooms, and was just on edge constantly.
I knew I had to stand up for myself and continue to refuse inpatient. I ended up doing three days of infusions at the clinic where I came in at 7am and left around 3pm. While I was there I was given two rounds of benedryl. zofran, phenergan (instead of compazine which is their standard,) Depakote, DHE and magnesium. I did this one time in December and another time last month in January. I was given different types of abortive medications that were creams, syrups, and dissolvable pills. I just received approval for Botox which will hopefully be my preventative. Even though I have already tried it twice with no success, the people at the headache clinic think it will be the answer for me. I have also been doing occasional nerve block injections in the office which are helpful sometimes.
Keeping my fingers crossed!
OH, for extra fun… I burnt my hand so badly on the first night of one of the infusions I had to go to urgent care. I have a newfound respect for the microwave now though.
Live and learn?
Oh, this could get long but I am going to try and get to the point.
Since December 2014. I have had a small bowel series, gastric emptying study, hydrogen breath test and a MRE.
I shared how my doctor diagnosed me with gastroparesis in this post here.
The hydrogen breath test was inconclusive but the MRE showed some leads.
I have been in the emergency room twice over the past two weeks for abdominal pain, nausea and uncontrollable vomiting. My white count was 22.1 at one point.
I have a scope of my ileostomy (aka ileoscopy) tomorrow afternoon which I am really hoping will provide some definitive answers to what has been going on with my intestines.
I have been fortunate to have the ability to be involved in a number of great things over the past few months. So, despite a lot of pain, frustration, and just wanting to live a “normal” life, I do have a lot of positive things going on.
In November, I attended a Get Your Full Course dinner event with ulcerative colitis patient and famous chef, Sunny Anderson.
In December, I was lucky to be able to be in Orlando for the Advances in IBD conference. There, I joined forces with other IBD Social Circle members and did a live round table discussion with Dr. David Rubin of the University of Chicago, Dr. Tauseef Ali of the University of Oklahoma, Dr. Peter Higgins from the University of Michigan and Dr. Edward Loftus of the Mayo Clinic.
I have also been doing content editing for a new health website and am a contributor to CrohnsDisease.com
OK, now that I have talked your ear off (if you made it to the end) I think that is about it for now.
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