Silly Worries...

I have a small black bag which sits by my front door. I keep it for ready for when I have to go to the emergency room, although I forget it many times. The box that the bag sits on has bathroom items inside, many of them being items from my many hospital stays. A popular offering seems to be a shampoo and body wash combination which comes in a spray pump bottle. I have to admit I have never tried it because it creeps me out, but I have saved them just in case the end of the world comes and I can’t get to the CVS.

  I was one of the first people to have an augmented bladder made at Boston Children’s Hospital in the 80’s, a result of the Spina Bifida issues. Problem for me is that they made the bladder bigger using parts of the bowel, which is not sterile, hence infections have plagued me since childhood and resulted in my renal failure and transplant. As one way to try to deal with these chronic infections, I have boxes of durable medical supplies delivered to me monthly. These boxes are big and are presently taking up the only closet area I have in the small place I currently call home.  Over the years I have gone through many companies and many different types of supplies. Anyone who has had experience has this issue knows that hospitals often don't have what we need, although you would think they would. So in my small black bag I have a stash of my special supplies especially for those times I actually remember to take it with me. I also have these supplies in another travel bag, a day bag, a side pocket of my jacket and of course, my regular pocket book. I choose my pocket books specifically for the pockets so that I have one big enough to store these supplies. In the back of my car I have a bag with a stash as well. I live in fear of being stuck somewhere without them because after so many years using these supplies it would be dangerous not to have them available!

The same goes for my medicine. Piled in the same closet area are several boxes of different medicine collections. One has old medicine which I keep just in case, once again, the end of the world comes. Stuffed in the box are also various medical things I have collected over the years, just in case. Another box is full of just one of my transplant medicines because they take up more room. And then there is the plastic bin which holds my regular medicines. I finally replaced the pill holder box given to me after my transplant this year. Pretty bad, I know. I also choose my pocketbooks for the ability to hold my daily medicines and a small bag with extra pills, just in case I get stuck somewhere.

Not knowing what your body will do tends to make you think about what could happen and what you need to do if something does happen. Especially if you have children or pets you are responsible for. My life is pretty much wrapped around my four-legged kids and I find myself these days never leaving home without making sure they both have enough dry food out in case something happens to me. I make sure a light is on and make sure the place I am living in is as neat and clean as possible, just in case others have to come in to take care of them for me. Luckily, I am the “everything has its place and every place has its thing” type of person anyway, so the latter part is not so bad. At some point I also became superstitious in my own way and always tell my dog that I will be back soon, followed by “I hope” under my breath. You never know…

Doorknobs, keypads, phones and other commonly shared items represent a source of potential danger and being out in public, especially during flu season, can be rather annoying. But, nothing is more frustrating than standing in line at a store only to find at your turn that the person helping you is sneezing and hacking all over the area and handling the items you intend to buy. The lack of understanding or caring that a simple sneeze has the potential to kill someone else makes me mad. This being said, I have a bottle of hand sanitizer with me most of the time since I know I am in the minority rather than the majority and just have to say thank you and go on my way.

And we can’t forget the rubber band-wrapped stash of medical records I keep in my pocketbook and the pile of recent doctor visit records I throw under the pillow that sits on the passenger seat of my car. You know, just in case.

Did I mention that I also now wear a medical ID bracelet? A suggestion by a doctor a few years ago once I was diagnosed with Adrenal Insufficiency. I could only fit a few lines of my “issues” on the shiny silver band, so I had to choose from the most important, just in case.

My life is ruled by silly worries such as these.




The Accessories Of...

I estimate if I were to put all of the hospital, emergency room and other ID bands that have been wrapped around my wrist over my life, they would fill two Staples copy paper boxes.  Maybe three. If I were to guess how many boxes my medical discharges, doctor visits, tests and records would take up, well, far more than three that’s for sure. In my drawer are countless pairs of hospital socks, the ones with the sticky treads on the bottom so we as patients do not fall down and sue. I rarely wear them, which is not a surprise. 

Real Worries...

On my way home tonight was the usual talk on the radio about the new president and all the issues that have come along with his administration. Today’s big news is the repealing of the Affordable Care Act and replacing it with something that seems far from feasible to me, and seemingly everyone else who was being interviewed.

I have been trying not to panic about what they are going to do since there is no point worrying before something actually happens. Yes, the ACA has been somewhat of a mess for me, but at least I can accept that it was enacted with good intentions rather than out of spite and stupidity.

Health insurance, being around good emergency rooms, hospitals and doctors has pretty much ruled my life since I was in college. Even having good access to pharmacies and laboratories has had to be a consideration. And I have had times where I have had to pay over $500 out of pocket just for insurance monthly, never mind the rest of all my health needs. I have given up on some dreams and goals, declined job offers and more because of these necessities. But, until now I have never felt like I have had absolutely no say in what happens to me. To have my literal life in the hands of a group of people with no interest in the welfare of millions is pretty much terrifying and really disgusting. I can only hope that by the time I make this blog live there will be some positive news to write.

Mundane thing such as looking for a job, offering to volunteer, going out with friends and anything else which involves making plans and commitments has become a source of stress. As with other aspects of my life, it was not always like this. As my body has gotten worse over the last few years so has the reality that I may not be able to be all that I used to be. Even at my worst before, nothing really stopped me. Now, about 8pm stops me, ha. The real worry is that I will not be able to follow through on my commitments, no matter what they are, because something will happen. And the shame is that I really love to go out and experience the world!

Then there is the anything but mundane issue of now being resistant or allergic to most every antibiotic thanks to having them thrown at me every time there was an issue for many years. It began when I was living in Colorado years ago and had yet another doctor who did not think of the whole picture. I ended up having the horrible experience of having a picc line put in, unfortunately by someone who had no idea what she was doing, but that’s another story. I had the line in for three weeks while I went to work and did my usual things in between having a visiting nurse come in and administer the medicine. But at the end of the time it turned out that the extremely strong doses did not help and it was all for nothing. At that time I also went to more specialists trying to get help, something I have done over and over again, and found one doctor who was actually visiting a hospital from out of town and had a new idea of flushing bladders with Neosporin to try to get rid of infections. I was willing to try anything, and it worked for a while…

Since that time my issues have expanded from just urinary tract infections to other serious ailments that, of course, need antibiotics to be treated. Cipro and Levaquin were the first to be taken off my list thanks to having every doctor use them to treat everything. At first they were fine, then came the incredibly intense muscle pains that left me barely able to stand up straight, never mind walk. Then came Macrodantin with its lovely neurological side effects. Most recently I have had to add Bactrim to the list because I have begun to develop painful hives on my face and one part of my foot when I take it. Hives are not pleasant and the worry is that it can lead to worse symptoms. There is also a list of many other medicines I am unable to take safely due to the transplant, so the list is fairly long.


Right now I have one medicine left which I am currently taking way too much thanks to my chronic sinusitis and have no doubt that this medicine too will be added to my list soon. This terrifying possibility really hit home this past week when I was forced to go to a local Urgent Care. It’s not a place I would normally choose because most are not equipped to handle things, but their website stated they were an extension of the local hospital and had the ability to do lab work and administer IV meds. So, after days of feeling  absolutely miserable, and a very long day at work, I went. After paying and being led to a room in the quiet building the doctor came in, and five minutes later I was sent away. Only after watching the doctor become visibly upset, almost angry, that I was there because I was too “complicated.” Yep, there’s that word again. Anyone care to decipher what he really meant? He listed all the meds I am resistant to and reminded me that IV meds are all in the same class as the oral meds and there is not much left for me.

Somehow I have had the luxury of allowing myself to believe, hope, that IV meds are special and will be able to treat me once the orals lose all ability.