In Sickness and In Health

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Sometimes I think it was just a bad dream…and then I look at my bruises from all the IV bags and needle draws and the rashes from the tape and I am reminded it is not a dream but my nightmare again.   C-Diff – Clostridium difficile has chased me for the past five years on and off, but I won again, it was a hard fought win, but a win!  I still can’t believe I didn’t know how sick I was, I actually went to work Monday, but it was soon obvious I could not stay… I left work at 11:30, contacted my GI Doctor and was sent to ER where I was promptly placed on IV fluids, in isolation by 12:30 pm the same day.  I stayed in the ER for the next 9 hours consuming 3-4 bags of much needed fluids as I continued to literally run to the bathroom in excess of 30 times over the course of the day.  I was lucky though, I had a hazmat room, but no connecting bathroom so they had to quarantine the common one for me, much to the condescending looks from the pregnant woman in the next cubby.  There were patients lined up in the halls, bleeding, handcuffed, high, MVA accidents, etc.  I was too tired and sick to be scared yet.  We were told I would be spending some time at the hospital but were waiting on a bed, that is when the reality of the situation started to sink in.  I did pack a small bag with a nightshirt, a book and my phone figuring a night of fluids was all I would need – wrong.  The hospital became my home for the next week.  We got word around 5:00pm that a bed was available and were just waiting for transport – there are two campus’ at this hospital and I was to be transferred to the other.  It would be 5 hours before I was actually transferred!  I really don’t know how we passed the time, did I mention it was also my 30th wedding anniversary!  Not exactly how we planned on spending it, but why should it be any different than the way we spent our 25th.  And they said it wouldn’t last – LOL.  My stay was not under pleasant circumstances, but the nurses made it so much better than it could have been… they pampered me even though I tried not to bother them… they listened to me… they encouraged me to have my pity party, that I had earned that right.  I don’t really like to complain, lets be honest, C-diff is horrible and lonely and degrading, but I was going to get better eventually.  I think about the kids with cancer that are so young and scared….. and also I think about the Parklands, the Sandy Hook… the list goes on and on.  When you are alone and miserable, all you have is your thoughts. Later comes the guilt for feeling sorry for myself.  But those nurses would not let me feel guilty, they picked me up when I needed it most, so I had my pity party and then moved on ready to fight the fight again!  They kept commenting on how my attitude was so good and upbeat for someone so sick… I didn’t feel that way, but I am glad I projected that.  You see, I felt like a burden to everyone, my family, my friends, my doctors, my co-workers and yes even those incredible nurses.  In my circle of friends and family, I don’t know anyone that has had the health issues that have plagued me over the years from a non terminal disease.  It seems I always have something… I often wonder if people think I am faking or exaggerating…I mean I know I am not, but it’s hard not to wonder what people think.  Being sick is lonely, you don’t want to burden people, but you want to be heard and understood, its’ a vicious cycle.  Sometimes I wonder if I am being punished.  I grew up with a very sick mother, my mother’s illness was always in her head, they were not physical ailments that you could see… she was manic and bi-polar.  I didn’t understand this as a kid or even as an adult if I am being honest, and I certainly did not feel empathy, I felt cheated.  So as I sit here recovering again, I have to wonder if this is some type of karma for not seeming to care when I was younger.

C-Diff

Clostridium difficile :cdiff

The ugly monster that lives inside me.  Five years out of surgery and with all the life changing ways I have adjusted to my new normal, nothing defeats me like this infection.  In my previous posts I have mentioned how my beloved rescue Staffy Bella had “diagnosed” me several times with this awful disease.  The last couple months I have been living in a sort of denial of how sick I was, I didn’t have her with me anymore to warn me of how sick I was and I didn’t want to listen to the inner voices in my head that something was very wrong.  Only someone who has had this debilitating illness can truly understand it’s effects on the body.  The diarrhea may be perceived as just a nuisance to some people, but the reality is it is physically draining.  Imagine going to the bathroom 10 times before 8:00 am and going to work being on your feet all day and trying to pretend that you are fine.  Dehydration sets in rather quickly as do the other symptoms of nausea, fatigue, pain and tenderness in the abdomen that feels like your body was a punching bag for a champion fighter.  You are hungry but you can’t eat, you don’t go out because you know you will be sick, you can’t even enjoy the comfort of your partner for fears of being sick.  In my case it also adds to my IBS symptoms and exacerbates the pain from my back surgeries.  I also have the perfect storm of being allergic to most antibiotics.  Currently there is only 2 antibiotics that can treat recurrent C-Diff and I can take Vancomycin but it comes at a hefty $500 copay for a 10 day supply (I will be on for close to 3 months)  Insurance companies and pharmaceutical gouging will be another blog post!  In addition to the cost, Vancomycin also makes me very sick to my stomach, but it is a necessary evil to fight this disease.  I have explored other treatments, in 2016 I had a Fecal Transplant which involves taking healthy stool from a donor and transplanting via a colonoscopy into a sick person.   Gross I know, but if you get passed the gross factor, Canada and other countries have been performing for decades.  I won’t get into specifics but suffice to say, after my transplant I was rid of the infection for a year and a half.  Fecal transplants have about a 95% success rate compared to antibiotics to cure C-Diff, but many people like myself with recurrent C-Diff may need repeated transplants.  In my case, I believe I was reinfected after suffering from a kidney infection back in February – a transplant does not protect you from this as antibiotics are a cause of C-Diff as well as a cure sadly.

As I write this I am fighting the urge to throw up from the Vanco and trying to find a way to get fluids and nutrients into my body to feel stronger, it is a constant battle that I will have for the foreseeable future, but I will get thru it again.  I will have days like today that I will allow a little pity party, try and shake it off and dig deep to find the strength – I WILL FIND IT and hope to beat it once and for all!

Bella – A Dog’s Life and Purpose

Not sure where to begin with this post… a huge part of my recovery is missing now.  Her name was Bella and the shelter may say that I saved her life, but the truth is, she literally saved mine…  I was volunteering at the shelter for a few months after losing my beloved chocolate Lab, Brandy… we shared almost 14 short years together and for the first time in my life I was without a dog.  I would go to the shelter and walk the dogs and as a hobby, I dabble in dog training; so during walks I would work on simple commands with the dogs, mostly “Pitbull” type dogs that too often get looked over in shelters.  I am lucky,  our shelter is a no kill one, but if dogs are there for years or cannot be adopted out due to their fears, etc, even the most devoted shelter sometimes has to make the humane call for euthanasia as opposed to stressing an animal beyond it’s limit by being confined.  December 24th, 2012,  I arrived at the shelter and this beautiful terrified dog was “found” and turned over to animal control, she was hiding under the office chair, terrified of noise, would urinate if a man so much as spoke around her,  all the while shaking while trying to appear invisible.  Her belly was swollen and her nipples were engorged and she was thought to be pregnant.  I knew she had to get out of there if only to have her puppies in a home surrounded by people that would never hurt her.  As I spent time with her trying to earn her trust (it wasn’t hard), we formed a bond.   I had never seen a dog so traumatized or damaged.  Her ears were cut off ruggedly most likely by scissors, she limped when she walked, but her eyes… those beautiful eyes… they just begged to be protected… what terrors had they seen?Bella 2012

I decided she would be my foster, but we had to wait a week as the rules were a dog had to remain at shelter for 7 days in case she was reclaimed.  I visited every day and cried and fell in love… The biggest obstacle I had to overcome was that I had a husband at home and 3 adult sons of which one was still living at home.  How would she react?  Would she be scared?  So on December 30th, because I was a volunteer we met on that Sunday due to the holiday, my husband and I went down to the shelter and I secretly got my hopes up… As we arrived, animal control went to hand me the leash and she huddled next to my husband and off they went on a little walk!  He came back and just simply said to me “put her in the car”.  I think we knew she was already ours on the ride home but didn’t want to jinx it.  We took her home and fed her gave her a soft warm bed and some toys – she had no idea what to do with a toy.  She just looked so relieved to be out of there.  We gave her a bath and gave her some time to just be warm and dry.  After a couple hours, she claimed this spot on the couch next to her second favorite human, my son…

bella nick

Ahh the things we could learn from dogs.  With New Years Even being the next night, we had already had plans, but my husband would not leave her alone, so I went to a friends for a couple of hours and found them cuddled on the couch when I got home… It was one of the best New Year’s Eve’s ever!

After seeing the vet a couple days later, it seemed Bella was not pregnant, but had recently given birth and then with her puppies probably sold she was dumped like garbage… I still get boiled up when I think of the monsters that did this to her… but as they say “one man’s trash is another’s treasure… and boy did we find a treasure!

I had only a month with Bella before getting hurt, although she bonded with us, she was still wary and wasn’t much of a snuggle dog with me yet, she was affectionate and her personality was coming out a bit, but still needed some time.  She had this wonderful boxing dance she did at the top of the stairs when we would come home, it was hilarious and made my heart swell!  Fast forward to the next several months, most of which I was either bed-ridden or in the hospital…. It is now somewhere either July or August when I finally went home, I was still confined to bed though.  Bella usually would lay on the floor or stay on the couch most of the day, but then something was happening, unbeknownst to me.  I was very sick and on a lot of medicines to fight the spinal infection, Bella starting getting on the bed and laying her head on my belly and crying and pawing me.  After a couple days of this we ended up at ER again where it was found that I had C-Diff  – a very dangerous, deadly infection brought on by antibiotics and or being in a hospital.  I was very sick, back on IV therapy and more medicines and soon back home recovering again.  Bella went back to pretty much ignoring me again as her bond was still stronger with the men due to my long absences.  We started to question if she had known something was wrong with me as it was so strange how she just went back to leaving me once I was recovering.  We got our answer a couple months later when I was sleeping and she hopped up on the bed put her head on my belly and started crying… I wasn’t actively sick yet, but we wasted no time and called my infectious disease Dr….. once again positive for C-Diff!  Bella saved me again!  My body was already fighting so much infection and dehydration happens so quick with this additional infection, I was too weak to realize how sick I was, but she knew… We mentioned it to my Dr. who confirmed that there are certain dogs who can sniff out C-Diff, much like a dog who sniffs out seizures, cancer and diabetes!  The dog that was discarded as trash and abused by humans had just saved a humans life, how ironic is that.  I will never be able to express the gratitude in one post that I have for that beautiful creature that I miss so much.  We only had the blessing of Bella for 5 short years, but if you were lucky enough to know her, you loved her.  She loved humans, babies, small children and even cats!  How could someone torture something so pure and loving… I will never know, but I am so glad to have the pleasure of making her last 5 years full of love and affection… I love you Bella, until we meet again

Never Ignore Your Intuition

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Been awhile since my last post…. the Flu has been widespread around the country, I am allergic to the Flu vaccine and honestly not a big believer in it’s effectiveness,  so it was not a shock to me when immediately after my last post after having run errands all that morning that I got up from my laptop and BAM!  I was freezing, chills, shaking, headache, fever and my whole body ached – especially my back.

Recently a friend had suddenly lost his mother to the Flu, she was only 10 years older than me,  children and otherwise healthy adults were dying from this Flu, I was the one wearing gloves everywhere, staying home to avoid contact with possibly infected people, using hand sanitizer, using my sleeve to open doors, hold shopping carts, etc,  I even changed my annual physical to avoid being in the Dr’s office during Flu Season – how crazy is that??

So after confirming my symptoms on Google, I determined I had the Flu.  So over the next 2 days I stacked Tylenol/Motrin, drank lots of water and literally stayed in bed.  I kept ignoring the little voice in my head that something else could be wrong,  I had had the Flu before, but this was different.  I was up all night peeing, but I was drinking all day, normal right?  My back was killing me, normal for the Flu right?  My bladder felt like it was on fire – didn’t read that about the Flu…. Decided to check in with my Dr., but I refused to go in for visit as I didn’t want to be around sick people during Flu season.  I described my symptoms and she too felt symptoms were in line with the Flu, keep doing what I was doing and keep in touch.  After a week I started to feel a little better, but could not be without Tylenol or back in bed I went.  Then after the first week I had to drive to an appointment about 20 minutes away.  Shortly after getting behind wheel I got that feeling again, shaking, chills, fever, nausea and the pain in my back!  It felt like 3rd degree burns all over and I could not even touch the left side of my back.  Called my Dr. who had me come right in, I had to call my husband as I could not even drive at this point, was then sent for a CT SCAN,  which did not go well, I don’t do well drinking the contrast, especially when you already feel like vomiting and your kidneys are screaming and they had a tough time getting the IV in!  Turns out I did not have the Flu (well I may have had prior but we will never know for sure) but I had a serious kidney infection that almost resulted with a hospital stay had I not gone to the Dr. when I did!  By this point I was so weak and in so much pain, I was just relieved to have a plan of action.  Antibiotics, my nemesis, they are a necessary drug to fight infection, but for people like me they come with serious risk.  I am prone to C-Diff  – clostridium difficile infection.  I suffered from this for 2 years after my back surgeries.  It is a cruel illness, it is a life threatening illness, for this reason I will usually resist any type of antibiotics, but this was different, my kidneys were at risk of permanent damage.  So I am taking them for 2 weeks, loading up on probiotics and keeping my fingers crossed and praying to my Guardian Angels for guidance – had I listened to them before I would not be in this mess!  You see, for the week prior I kept saying things like “if I didn’t know better I swear I have a UTI” or “should my back hurt this much?” I kept quieting the voice in my head… why?? I’ll tell you why, FEAR a simple four letter word – but fear is the EGO talking, letting the fear of being near germs actually made my fears manifest and kept me from seeking the help I so badly needed even when all the signs were there that I was ignoring!  I start being a better listener today.  Listen to your “inner voices” pay attention, we usually know when something is off, but we shut the “noise” – the fear, the gut feelings, we tell ourselves we are being paranoid, etc, the universe is never wrong….. Hoping to be up to daily posts soon, taking this one day at a time.  So glad I have this outlet for healing and enlightenment, even if no one reads it, it is therapeutic !