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!
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 !
I have spent the last couple of days trying to figure out what to write next.. the memories are both vivid and blurry, do I really need to do this?? I want to leave it in the past but I have this unexpected urge to put it all in print, so here goes!
I remember being in the hospital, I remember lots of intense pain, I was forbidden to get out of bed without a nurse or an aide – I also remember that most of my nurses were all pregnant and I didn’t want them to help me out of bed because I was worried about their babies! (I was in the hospital so long most of my nurses had their babies before I went home) I remember this intense feeling of shame of not being able to attend to my most basic needs, I think one of the most demoralizing things of being in the hospital is someone wiping your *ss for you… how do you make eye contact after that?? If I had a male aide, I would hold out until the shift change. I remember thinking what if I never walk again and what if people have to take care of me like this forever?? It made me feel in awe of people that are confined to wheel chairs and others who live with limitations and this terrified me too… which brought on my guilt again, it was a vicious cycle of hopelessness, frustration, suffering and pain.
So now that we know we are dealing with osteomyelitis we know I need a powerful antibiotic to fight it. The last surgery was called a debridement – an infection of the surrounding tissues and organs of my spinal column, the infection was pretty widespread by the time they found it. My “band-aid surgery” was now a raging infection with a dozen staples and a drain and a lovely PICC line installed in my right arm so the drugs can go directly into my blood stream to fight this monster of an infection. Well at least I will get better now right??? The Doctors didn’t know at the time, but it was only the beginning of my little piece of hell. I was informed that due to the care I needed I would be transferred to a rehab hospital where I could get stronger and receive physical therapy to regain my strength and balance. I strongly felt something was wrong but nobody would listen to me, they just kept pushing pills and sent me on my way. The first thing I remember about the rehab facility was it was HOT, I’m talking blisteringly hot, at the time we were going through a horrible heatwave where it had been over 100 degrees and humid for several days. They put me in a room with several people and I could not breathe, the AC had gone out and it was stifling. My pain was getting worse, everything was blurry and I could not move… I must have called my husband, I don’t remember much during this time, but I remember my husband’s parents coming in with a fan to cool me off…. I was burning up and I kept telling them something was wrong… My husband came by after work… not sure how I was moved or how many days went by, could be 1 or 3, but I was moved to a room with AC and he demanded a nurse take my temperature… I was 102.9 and we were informed they would not call a doctor until I was over 103!! I was writing in pain and begging for someone to help me, my arm was red where the PICC line was and I was scared I was going to die there. The nurse informed my husband she would page a doctor… he decided to go the nurses station and stayed there with his arms crossed until someone came in… now my husband can be an intimidating person when he is determined, for this I will be forever grateful, if he had not done this my story could have had a very different ending….Within 10 minutes a doctor was there. That action literally saved my life.
The next few hours are a blur and most of this was retold to me by my husband and friends…. I know I was transported by ambulance back to the hospital, the PICC line threw a blood clot and was also infected! Even as I am writing this my breathing is rapid and I feel very anxious…. After removing the infected line I had to wait for what seemed like forever for someone to come back in… My friend and her family were in the ER, her mother had fallen, and they saw my husband in the waiting room, they say they came in to see me, I don’t remember…. I remember being told I was being sent back to rehab facility and I flat out refused, begging them to readmit me here or they would kill me there! Then I was alone for a long time, they had sent my husband home to get some rest telling him I would be moved to a room soon. In the confusion somehow they had mistakenly put on my chart that I had been sent back to Rehab… I was utterly alone… the room was dark, I was ringing the nurse button because I was in so much pain and I also had to go to the bathroom, I was still restrained to the gurney… it was that nightmare all over again… I was screaming but nobody could hear me…I don’t know how long I cried and yelled, it felt like hours, it could have been minutes I really don’t know. Finally, by the grace of God, a nurse came by to clean the room and found me still in there… she was frantic, explaining to me she didn’t know I was there… I think I passed out after this, I really can’t be sure…
Have you ever had a nightmare, where you are scared and trying to scream to people so they can save you but you can’t get the words out or be heard… you wake up in a cold sweat and out of breath? That’s what the next hospital stay felt like every day. I was trapped in a shell of pain, I couldn’t get out and no-one seemed to be able to get to me and make it stop. Even as I type this the details are blurry at best, I remember Doctors and nurses and blood draws and confusion of what to do with me. I remember morphine and IV bags… I remember the look on my husbands face of helplessness and frustration. I remember many of the ER doctors remembering me because we had spent so many visits to the ER together… oddly, this comforted me, they genuinely seemed concerned for me but also baffled by what was causing me such pain….. blood counts starting coming in, something was very wrong, my white cells where off the charts, so at least they at least knew they were fighting infection, but how to fight it? I was awaiting a CT SCAN aspiration – this involves inserting a large needle into the spinal column to drain fluid and determine what bacteria is causing infection so it can be eradicated. I remember being awake, which was explained to me that I had to be able to tell them if something causes pain or other sensations, there is some sedation but you are aware of what is going on. I remember lots of pressure and praying it would be over soon. Sadly it was over soon, my spinal fluid was filled with blood and pus… I was being told I had to go into emergency surgery. To back up a bit, my husband was not with me as I was admitted during the night and it was a weekend so my test was going to be some time the next day, we didn’t know when and there was no time to let him know I guess. So back to surgery, I was unable to give consent as I had been midly sedated for CT SCAN, I remember a sense of urgency to get my husband to the hospital to give consent as it could not be done over phone, I remember crying and thinking I would never see him or my children again and I needed to tell them I loved them one last time….I was lying on the gurney on the way to surgery and I still didn’t know exactly what whas happening, it was like watching a movie in slow-motion accept I was the main character. I can’t really write about what happens next in order as I don’t have real memories or they are so fragmented I can’t be sure what is real and what was dreamt…I have to think about how to continue my journey, I’m not sure I can relive this part yet, reliving this is harder than I thought and I am in such a good place now, but I feel like I need to put it in print to leave it behind??