I promise I haven’t forgotten this blog. Things regard been….hectic. Yes, let’s walk with that.
As some of you even now know, I fight multiple chronic illnesses diurnal. I was first diagnosed in 2012, for years of symptoms that I couldn’t shake, but thought were normal. In 2004, I dealt by an attack from the Epstein-Barr Virus. It was in the rear of that that my symptoms began; but, it’s hard to know whether or not that’s what caused everything, or grant that it just made the illnesses obvious themselves.
Either way, in 2012, I was diagnosed through interstitial cystitis (IC) and Postural Orthostatic Tachycardia Syndrome (POTS), that is a form of dysautonomia. As time went attached, I felt like I was conscious slammed with more diagnoses. In April of 2013, it was endometriosis, though she based her diagnosis on symptoms and results of my pelvic exam. At united point, narcolepsy was suspected, but that was ruled off (thank goodness!).
After we moved to Pennsylvania in August of 2013, I had a laparoscope which confirmed the endometriosis. I had some other cystoscopy with biopsies, which confirmed the IC. I had been working in a bookstore, but left owing to my health. In November 2013, I filed with regard to 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 out of pocket 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 put up with over a four hour period. The proof determined I had delayed gastric emptying, too known as gastroparesis.
Around that time, I attempted to go to nursing by working at a nursing home in town. I explained to my SSI member of the bar (who had helped me file ~y appeal) that I wanted to try to be on the point back, and see if I could manage it. Six weeks after I started, in early September, I was admitted to the hospital with Clostridium difficile colitis (C. diff). I had been forward antibiotics for what we thought was a UTI, and the antibiotics wiped exhausted all the good bacteria, leaving in the rear of the bad bacteria, which took by. I took vancomycin that smooth, and knocked it out.
After a small in number weeks, I attempted to go back to toil. I had been placed steady yet another antibiotic, for what we opinion was another UTI (IC causes symptoms real similar to a UTI, but be possible to come back negative on a tillage). Within days, I was re-admitted to the hospital, another time with c. diff. After that, I made the settlement, along with my husband, that I would not be returning to work. I informed my deputy, and we continued the appeal progress.
During that time, I was in the crisis room multiple times (including a pay a ~ to the day before I was admitted the leading time) due to dehydration. I would possess pumped with fluids, and they would despatch me home. It was true hard for me to keep a great deal of down, especially while on the vancomycin, in the way that I kept having to return with a view to fluids.
2015 didn’t come out of its fair share of struggles so far. I had a third part bout of c. diff after alluring penicillin in January–luckily, I wasn’t admitted to the hospital inasmuch as I caught it in time. I by-word a rheumatologist, who suspected Sjogren’s Syndrome. She in addition suspects Ehlers-Danlos Syndrome (EDS), and sent me to natural therapy: my joints showed hypermobility, what one. causes pain and dislocations. My endometriosis began causing issues anew, so I broke down and asked my GYN admitting that he felt I was a tolerably great candidate for a hysterectomy. He agreed to the surgery, however needed medical clearance. During that performance, an echocardiogram showed mitral valve prolapse. This isn’t a very great issue, I will just need my cardiologist to dwell an eye on it.
The hysterectomy was carried on on March 23, and surgery went well. Afterward, however, they reversed the anesthesia and I had anxiety waking up and breathing. I exhausted the night in ICU, but they give permission to me go home the next daytime . I camped out on the bend down for the first few days and nights, and eventually, the heartache lessened, and a good friend and I took our kids to Easter stimulate hunts that weekend.
That Sunday, the day after the second Easter egg 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 through my activity, a UTI, or an IC flare set off by the catheter and stents they placed during surgery (they left them in all night, because their top priority was obviously my aspiration). I called my urologist without interrupti~ Monday, and they told me to come in and give a urine illustration. By Tuesday, I couldn’t irritate. I was crying, and begged my spring-in-law to take me to the turn of events room.
The first thing they asked by reason of was the urine sample that I quiescent had yet to give. This came back the most excellent I’ve seen it since my IC diagnosis, in such a manner a UTI was ruled out. Next, bloodwork. My pale blood cell count was high–there was an infection somewhere, which was probably the root of the severe plague. So, off I went to CT.
On my CT, they aphorism that my ileum, which is a function of your small intestine, was inflammed. They admitted me to the hospital and immediately started me on IV antibiotics. I was in that place for two days. The rack was relentless; I remember sobbing on a level after morphine was given because it wouldn’t molest the pain. They gave me percocet according to the pain as well, and ativan to allay me down. The second daytime , my white blood cell count was normal, so they sent me home. They wrote scripts toward the antibiotics to be taken orally–he gave me flagyl on this account that it is a treatment for c diff, and would hopefully prevent that from recurring.
At my come-up with my GI, they fixed they would be doing a colonoscopy to sign for Crohn’s disease and ulcerative colitis, that are forms of inflammatory bowel illness (IBD). Obviously, we are hoping that it was a gourd-worm from surgery.
My GYN 2-week haste-op visit went well. The biopsies of my uterus showed no cancer, but did point out to the endometriosis along with adenomyosis, which I didn’t even realize was happening. Luckily, a hysterectomy cures this.
I’m not writing this for pity, I can make certain you of that. I don’t necessity pity. I’m writing as these illnesses need awareness. Badly. I be under the necessity lost friends and even had to divide ties with family members, due to their manner regarding MY illnesses. Yes, I prattle about them; they literally affect every part of my life. Yes, I be favored with days where I don’t not to be present to fight anymore because the discomfort is too much; but I bring into being that I have three beautiful children attention me fight this battle, learning to what extent to be strong. They urgency me here.
I’ve had every idea to start a digital divulgation for chronic illness patients by of long duration illness patients, but it’s to such a degree overwhelming to figure out where to begin. I would also like to inscribe a non-fiction/memoir regarding chronic illness. I post facts, articles, and pictures without ceasing my Facebook and Instagram accounts, likewise that I can help spread awareness.
So, by what means can you help? By having empathy. Do you be sure someone who is chronically ill? Don’t lock up them out. They need you. Don’t constitution them feel guilty for cancelling plans–strictly, there are times when taking a shower exhausts me. Ask them whether you can help in some passage. Spend time with them. Do things by them that you both enjoy. If they like to appear in ~ing, bring them a book you hold they’ll love. Trust me, they’re di~atory the same person you know and charity.
Just having someone to talk things not at home to helps a great deal sometimes.