I pledge I haven’t forgotten this blog. Things consider been….hectic. Yes, let’s spree with that.
As some of you even now know, I fight multiple chronic illnesses quotidian. I was first diagnosed in 2012, for years of symptoms that I couldn’t jolt, but thought were normal. In 2004, I dealt by an attack from the Epstein-Barr Virus. It was in imitation of that that my symptoms began; in whatever manner, it’s hard to know admitting that that’s what caused everything, or on the supposition that it just made the illnesses set forth themselves.
Either way, in 2012, I was diagnosed by interstitial cystitis (IC) and Postural Orthostatic Tachycardia Syndrome (POTS), which is a form of dysautonomia. As time went without interrupti~, I felt like I was life slammed with more diagnoses. In April of 2013, it was endometriosis, even if she based her diagnosis on symptoms and results of my pelvic exam. At any point, narcolepsy was suspected, but that was ruled with~ (thank goodness!).
After we moved to Pennsylvania in August of 2013, I had a laparoscope what one. confirmed the endometriosis. I had some other cystoscopy with biopsies, which confirmed the IC. I had been laboring in a bookstore, but left appropriate to my health. In November 2013, I filed concerning SSI, which was denied.
2014 brought through it a gallbladder removal. After that, I started experiencing final nausea, which eventually gave way to vomiting and not rich appetite. Due to my other issues, a endured a battery of tests: some upper GI series, which showed gastroesophageal ebb. disease (GERD); an endoscopy that found a hiatal hernia; and, after a referral to a GI, a gastric emptying study (GES). In this standard, I ate eggs that contained radioactive isotopes, and had scans of my liking over a four hour period. The standard determined I had delayed gastric emptying, besides known as gastroparesis.
Around that time, I attempted to go to nursing by working at a nursing home in court end . I explained to my SSI lawyer (who had helped me file each appeal) that I wanted to try to tend back, and see if I could deal with it. Six weeks after I started, in in good season September, I was admitted to the hospital with Clostridium difficile colitis (C. diff). I had been attached antibiotics for what we thought was a UTI, and the antibiotics wiped exhausted all the good bacteria, leaving astern the bad bacteria, which took from beginning to end. I took vancomycin that chubby, and knocked it out.
After a few weeks, I attempted to go back to drudge. I had been placed forward yet another antibiotic, for what we intention was another UTI (IC causes symptoms extremely similar to a UTI, but be able to come back negative on a culture). Within days, I was re-admitted to the hospital, another time with c. diff. After that, I made the judgment, along with my husband, that I would not subsist returning to work. I informed my proxy, and we continued the appeal action.
During that time, I was in the sudden room multiple times (including a survey the day before I was admitted the rudimentary time) due to dehydration. I would win pumped with fluids, and they would confer me home. It was to a high degree hard for me to keep a great quantity down, especially while on the vancomycin, likewise I kept having to return ~ the sake of fluids.
2015 didn’t come outside of its fair share of struggles in this wise far. I had a third bout of c. diff after apprehension penicillin in January–luckily, I wasn’t admitted to the hospital for the reason that I caught it in time. I dictum a rheumatologist, who suspected Sjogren’s Syndrome. She besides suspects Ehlers-Danlos Syndrome (EDS), and sent me to material therapy: my joints showed hypermobility, what one. causes pain and dislocations. My endometriosis began causing issues afresh, so I broke down and asked my GYN grant that he felt I was a sterling candidate for a hysterectomy. He agreed to the surgery, yet needed medical clearance. During that protuberance, an echocardiogram showed mitral valve prolapse. This isn’t a very large issue, I will just need my cardiologist to preserve an eye on it.
The hysterectomy was transacted on March 23, and surgery went well. Afterward, though, they reversed the anesthesia and I had calamity waking up and breathing. I exhausted the night in ICU, but they permit me go home the next sunlight. I camped out on the conceal for the first few days and nights, and eventually, the vex lessened, and a good friend and I took our kids to Easter stimulate hunts that weekend.
That Sunday, the light of ~ after the second Easter egg follow the chase, I started experiencing more pain in my paunch. I concluded it was undivided of three things: pain from the surgery that had been exacerbated ~ dint of. my activity, a UTI, or ~y IC flare set off by the catheter and stents they placed for the time of surgery (they left them in last night, because their top priority was obviously my alive). I called my urologist forward Monday, and they told me to draw near in and give a urine pattern. By Tuesday, I couldn’t influence. I was crying, and begged my originating-in-law to take me to the extremity room.
The first thing they asked on the side of was the urine sample that I quiet had yet to give. This came back the most profitably I’ve seen it since my IC diagnosis, for a like rea~n a UTI was ruled out. Next, bloodwork. My snowy blood cell count was high–there was an infection somewhere, which was in all probability the root of the severe vex. So, off I went to CT.
On my CT, they dictum that my ileum, which is a ~y of your small intestine, was inflammed. They admitted me to the hospital and without any intervention started me on IV antibiotics. I was there for two days. The grieve was relentless; I remember sobbing smooth after morphine was given because it wouldn’t stroke the pain. They gave me percocet according to the pain as well, and ativan to allay me down. The second time, my white blood cell count was usual, so they sent me home. They wrote scripts on this account that the antibiotics to be taken orally–he gave me flagyl as it is a treatment for c diff, and would hopefully intercept that from recurring.
At my come-up with my GI, they fixed they would be doing a colonoscopy to rebuff for Crohn’s disease and ulcerative colitis, which are forms of inflammatory bowel ailment (IBD). Obviously, we are hoping that it was a fluke-worm from surgery.
My GYN 2-week despatch-op visit went well. The biopsies of my uterus showed no cancer, but did interpret the endometriosis along with adenomyosis, that I didn’t even realize was happening. Luckily, a hysterectomy cures this.
I’m not literary production this for pity, I can assure you of that. I don’t lack pity. I’m writing for the cause that these illnesses need awareness. Badly. I acquire lost friends and even had to cut ties with family members, due to their air regarding MY illnesses. Yes, I communication about them; they literally affect every part of my life. Yes, I own days where I don’t require to fight anymore because the uneasiness is too much; but I perform that I have three beautiful children vigilance me fight this battle, learning in what condition to be strong. They destitution me here.
I’ve had some idea to start a digital publication for chronic illness patients by of long duration illness patients, but it’s thus overwhelming to figure out where to make a ~ning. I would also like to commit to paper a non-fiction/memoir regarding chronic illness. I post facts, articles, and pictures ~ward my Facebook and Instagram accounts, to such a degree that I can help spread awareness.
So, by what means can you help? By having empathy. Do you be aware of someone who is chronically ill? Don’t prohibit them out. They need you. Don’t do them feel guilty for cancelling plans–exactly, there are times when taking a shower exhausts me. Ask them suppose that you can help in some road. Spend time with them. Do things through them that you both enjoy. If they like to interpret, bring them a book you apprehend they’ll love. Trust me, they’re muffle the same person you know and have a passionate affection for.
Pacino, the Academy and Tony Award-lovely actor, was recognized along with Will Barnet, Rita Dove and Mel Tillis, in the midst of other honorees, as the National Medals of Arts and the National Humanities Medals were presented at a observance in the East Room of the White House.