The Life of a Human Zebra

An open and honest look at my continuous battle with EDS, Dysautonomia, Asthma, Bronchiectasis and a long list of other comorbidities.

[thelifeofahumanzebra]

Ok so I have a TON of stuff to catch you all up on so here's just a start.... First of all, it may be a little while before I post a video of me talking because I'm dealing with periodic slurring of my speech and sometimes forget words (I'm hoping to have my new IHSS worker (s) document my outpatient therapy so you can all see the process... I want you all to know that if you are struggling, if I can learn to walk again with delicate lung conditions, you can get through what struggles your physical struggles. Yes, you might not reach the goal you were hoping for. But as long as you continue to fight and do your best to form a support group, family, friends, even a pastor or priest...You are a warrior and don't let anyone else tell you otherwise. Ignore the people who say "It could be worse" or "suck it up, so and so has this which is much worse." Your not alone, you have every right to feel the way you do and to be heard. (P.S. I believe there is a way to send messages to me either here or on out tumblr version) While in inpatient therapy at the same facility, with the help of a machine called a light gait, I was able to "walk" with the harness holding me up and not holding as much pressure I normally have standing. The therapists would help move and guide my feet and teach the muscles what their job is again. He's a photo of me getting ready to transfer to the therapy bed so that the therapists can strap me in and then clip me into a bunch of other things before the light gait pulls me up and then I tell the operator how much pressure I am and am able to tolerate. The whole rig is on wheels so then we "walk"around the gym. I can't wait to do that again. It was recommended I do home care before outpatient therapy, but they're so wrong. Other than my OT showing me a few things and being able to take a shower (They just stand by incase I eat it of need a towel), I got nothing out of home care and now my legs are almost back to square one The Life of a Human Zebra's photo.

[thelifeofahumanzebra]

Sorry for the absence...

Sorry I haven't updated you all in a bit. I have now just barely been home for a week and it has been very painful and exhausting adjusting to life (mostly) on my own again but in a wheelchair again. I've only lived on my own for only a little over a year, so things are a bit different. Also during my previous 4 times of relearning how to walk, I was usually doing it from a bad hip injury meaning I at least had help of one leg. Anyhow, I have a lot more pics and details about my stay at inpatient rehabilitation and some more current pics and updates to come soon.

[thelifeofahumanzebra]

My friends are so awesome! A few nights ago, Rachel Fitch and I had a girls movie night with plenty of junk food. One of the staff members I've known for years hooked us up with a large flat screen TV so we didn't have to watch on my laptop. I have no idea why my hair blew all over my face for the photo lol

[thelifeofahumanzebra]

After a rough couple of afternoons (most of which I don't remember at all, which is kinda creepy.)  Here's a picture I'm oddly excited about.  That is me in bed, still wearing my knee braces and AFO's (aka my ankle braces) with those white things, that happen to be ice packs, covering my entire legs.  

This is because today, for the first time in about a month, I walked.  I didn't do it by myself, it required being in a rig that holds me in the proper position and me doing part of the work while the therapists assist with the rest, but some of my muscles helped pick up and move my feet!  That is always the first big step to getting back to walking freely again!

[thelifeofahumanzebra]

I believe I have discussed this in the past, but one of the lovely benefits of having Ehlers Danlos Syndrome is the very fragile skin it comes with that is often also allergic to adhesives. I can get around most adhesive dressings using a special tape or products that are less irrigating, but since a PICC dressing runs straight to my heart, infections can be deadly, so there is no getting around the traditional adhesive dressing. After several dressing changes, this last one seemed to do the most damage, partially because even with using things like alcohol and going really slow, the adhesive did not want to release. So, here is a photo of what it looks like a couple days later. You can see the areas (red and pink areas) that are missing some layers of skin or have slight chemical burns from the adhesive. Lots and lots of coconut oil have been going on that arm.

[thelifeofahumanzebra]

I wanted to post this much earlier but I was having trouble getting the video to upload to youtube so that I could share it.  Here is a video of one of my nurses drawing blood from my PICC line... so if you are not one who can handle the sight of blood, don't watch this, although the only blood you see is in tubes.

[thelifeofahumanzebra]

The Forced End to Embarrassment and Humiliation while in a Hospital

I think there is something that very few people talk about when they speak of their experiences in the hospital. In the hospital, unless you are there for something pretty minor and are completely independent, you have to get over embarrassment and humiliation quickly. No one talks about being so weak that your doctor has your nurses put in a foley cath (aka a tube that sits in your bladder 24/7) so you don't have to get out of bed to pee, even in the bedside commode (which is basically what it sounds like.It's basically a toilet seat on top of a removable bucket that is basically built like a chair that they can put literally right next to the bed) or that time you were so weak you weren't even able to wipe yourself, let alone be able to participate in getting yourself back in bed. Of course once things started improving, I had a whole other set of embarrassments to get over and get over instantly. Congratulations to me, I've ditched the foley cath and can now use a bedside commode again. For most people, they would not find being able to get up and use a commode something to be excited about, but for someone like me, it required a little bit of a mental happy dance. However, while I could get my own pants down, I could not get them up on my own. Seems ridiculous I know, but it's just how it was. By this point, I had lost just about all function and strength in my legs. This meant that getting me back in bed was a two to three person job, involving being picked up, my pants being pulled up and me trying to help get myself back in bed by trying to drag my legs back to the bedside. If I'm lucky, on a good day, I get to sit up in a chair and give myself a "sponge bath" while an aid or nurse or both are in the room. Yup, me in my birthday suit in a room with a couple people who I have never even met outside the hospital. I have since graduated to being able to use my wheelchair to use the real bathroom and be able to handle the pants situation myself. However, yesterday afternoon, I transferred to the rehabilitation hospital. I've been here and some other rehab hospitals before, so I'm pretty familiar with the routine, One of them is showers. I am SOOOOOO excited about getting a shower for the first time in over a month. You can wash your body in bed, but you cannot wash your hair, one of the many reasons why I keep it up in a bun. The catch is, you usually have an occupational therapist watching and evaluating you the whole time, making sure you can do this and that and that everything you are doing is safe. To be truthful, after over a month in the hospital with no shower, you kind of stop caring about other people in the room. There are many other examples of the potentially embarrassing and humiliating things someone can deal with while in the hospital that don't get talked about not just because they are embarrassing, but because for the most part, it's not what people want to know when they ask you about your recent hospital stay. While yes, getting this detailed with friends and strangers is once again something I never thought I do, I think it's important to remind people that when they see people taking pictures while in the hospital and sharing updates, you need to keep in mind that there is a TON of really hard stuff that they are dealing with that you will probably never see or hear about. It's just something to keep in mind. There is a lot of stuff involved with having a severe illness that we like to hide, not necessarily because of embarrassment, but because we also don't want to burden those around us.

[thelifeofahumanzebra]

Anytime I am admitted to the hospital here in Chico with my respiratory issues, my doctor puts me on medication called Lovenox. It's a blood thinner that is used to prevent clots while I'm immobile in bed. Lovenox is given by an injection in the tummy... not the most pleasant experience. During my current stay, my CT scan of my lungs showed what could have been an old clot that was breaking up, a new one possibly forming or something else, the radiologist was unable to say either way. So, lucky me, I had to start taking the injections 3 times a day until I had an ultrasound of my legs to check for possible clots in my legs. Once I passed that, my doctor reduced my injections to just one in the morning and one at bed time. Because of my Ehlers Danlos Syndrome, I bruise very easily and tend to be more of a bleeder than most people. That means that this is what my stomach now looks like. I never thought in my life I would ever share photos of my bare stomach with people I may or may not know online, but I promised to be as open and honest with you all about living with these illnesses, so here you go. My mom took the first photo and honestly, I was shocked when I saw it because from my angle, it looks bad but I didn't realize just how bruised I actual was. The second photo I took of a new bruise that developed after the photo my mom took. You can even see how the EKG pad left its mark in the bruise.

[thelifeofahumanzebra]

Something I have mentioned in the past is that Ehlers Danlos Syndrome makes my veins and arteries very fragile and scar very easily. Because of that, when I’m in the hospital and require IV medications, finding and keeping IV access is nearly impossible at times, especially if I am receiving any kind of infusion (meaning a medication or fluid that they hang in a bag that flows into the IV over time, not just a syringe of a medication quickly pushed directly into the line). Most of the time they have a nurse that is specially trained with ultrasound to find a vein to put one in.  By day 2 of this stay, I had already blown through multiple IV’s and since I was receiving IV antibiotics, my doctor decided to have a PICC line inserted instead of another IV.  

PICC stands for Peripherally Inserted Central Catheter (https://en.wikipedia.org/wiki/Peripherally_inserted_central_catheter) and is a type of central line.  Basically, the tubing is inserted in a vein in my upper arm and then threaded through it until it reaches my heart.  Because it is a line straight to my heart, they take special care to keep not only the whole process of putting it in sterile, but the dressing used to protect it and keep it in place is also carefully monitored and changed using sterile precautions.  Overall though, I love having a PICC line.  It may seem crazy for someone to say that, but I’ve had many of them over the years and they always make life much better for me.  

One big positive of having a PICC line is that in emergencies, medical staff do not have to scramble to find veins to give me IV medication I need immediately (It is never a comforting thing to wake up in the recovery room with the crash cart at the feet of your bed and two very frightened physicians scrambling to start a new IV because the last one blew while they had to rapidly give me a dose of epinephrin) and as long as they don’t exceed the speed limit of the PICC line itself, they can push those drugs as fast as they need to without having to worry about blowing it. Another positive is comfort. While I do have to deal with the discomfort the adhesive in the PICC dressing brings for me personally because of my adhesive allergy (I can find alternatives to a lot of different dressings, a PICC line is one type of dressing I can’t mess with because of the increased risk of infection), I don’t have any of the discomfort and pain that often comes with receiving certain IV medications.  Some medications can really burn when they flow into a vein, while many infusions can make the whole area around the IV ache badly. Also, if an IV blows, all the medication that was supposed to be flowing into your vein, now freely flows into the tissues around the IV (called an an infiltration).  Another bonus about having a PICC line is the fact that they can draw blood straight from the line (I’ll post a video of this later) so I don’t have to get poked a million times just so they can get some blood.  There are some blood tests that for some odd reason can’t be drawn from the PICC line, but in my experience, most of them can. PICC lines can also stay in for long periods of time, as long as the lines don't become “clogged” or occluded.

Yes, there are a few downsides to having a PICC just like anything else.  Like I mentioned earlier, it is very important that the PICC be kept clean and dry at all times in order to prevent infection.  This makes things like taking a shower more difficult, although there are products and various ways than can help someone keep their line dry when bathing. Extra care should be taken when moving the arm with the line, meaning it isn’t a good idea to try out for a spot as a softball pitcher or do something that requires heavy lifting unless you clear it with your doctor ahead of time. It also isn’t the most fashionable accessory either, but almost all these negatives get thrown out the window when you need the PICC to help you treat an illness.

[thelifeofahumanzebra]

On Monday, the new semester at Chico State started, so many of my friends decided to take "first day of school" pictures like our parents made us as kids. I wasn't able to make it to class but I did at least snap a picture of my first day of school. I am probably the only weirdo who can't wait to start attending my classes. Having to spend going on two weeks stuck in bed (a majority of the time being spent using the BIPAP machine to help me breathe) and away from "normal" life will drive anyone a little batty. Toss being sick and not knowing what's happening into the mix and you can get someone pretty miserable.

My friends have been really awesome for me during this whole experience. This time period is usually busy and a bit chaotic for students. Even still, my friends have taken some of their precious free time to come visit, bring me goodies and pray with me. I don't think there's anything I can say that would help my friends truly appreciate how much they help me.

[thelifeofahumanzebra]

These were taken during Forrest’s first visit with me in the ICU on Sunday.  I shared these on my personal Facebook page earlier this week with this note:

“I'm still in the ICU right now. They were going to try to move me to the step down unit (DCU) earlier but it didn't happen. Early afternoon I started feeling pretty bad again but then a new nurse came in... Forrest! He was so excited, especially since he normally doesn't get to it me in the hospital because he never wants to leave afterwards. The photo of him across my lap while I lay back is his "I will take care of you" cuddle that he uses when I'm not doing well at home. He gets to visit again today and I can't wait. One of the hardest things about being in the hospital is not having what you use at home to make you feel better. In this case it's being able to curl up with Forrest. Such a good boy, he didn't even put up a big fuss when it was time to leave.”

[thelifeofahumanzebra]

ER, how I loathe having to come through your doors. Well, my lungs have finally had it. I've been struggling so badly with all the smoke and ash in the air. It was a complete nightmare of an ER stay. I have now been admitted in worse condition than I arrived. Details on that later. My Ehlers Danlos Syndrome makes my veins very fragile and scar horribly. Over the years I have had probably over 1000 IV's. Because of that, I often end up with IV's in odd places. This time it was the back of my elbow. Unfortunately, it has already gone bad. That in in a couple of hours the Vascular Access Nurse (or VAD nurse) will come and use ultrasound to place a new one.

[thelifeofahumanzebra]

Hello Moon Face!

Prednisone (and other steroids) come with a very long list of side effects. One of them is demonstrated in this photo. It’s referred to as “moon face”. Until today, I’ve been pretty lucky in avoiding that particular side effect recently. It rounds out my face hiding what jaw line I have. This is because of fluid that retains in the tissues. If you see me turn red like I have a sun burn, no worries, it’s just another prednisone side effect.

[thelifeofahumanzebra]

Oh, how you forget so quickly

It has been quite a while since I have been in a wheelchair long term. I have spent a total of about 3 years in either a manual or powerchair but have been mostly walking on my own for the past 4 years or so. Right now, I'm loosing the function in my legs (not sure why yet) with the exception of the tiny bit of walking I do getting around my studio apartment, I'm pretty much wheelchair bound full time again. There is so much I forgot about what it's like to be in a chair all the time. For example, your hands are always disgusting when using a manual wheelchair, so today I bought a pack of small packs of hand wipes to keep in my bag. I also forgot that my wardrobe had mostly long length tops because, even a regular t-shirt while in a wheelchair makes your torso disappear. I'm hoping that by the time I start school again in about a week this will all be second nature again. The poor knuckles on my left hand can't afford for me to keep misguessing where the door frame is on that side while getting into my apartment.

[thelifeofahumanzebra]

Sorry it has been a little while since I last gave you all an update. I recorded this for you late last night (8/11/15) A lot has been going on...

[thelifeofahumanzebra]

Travel Adventures!

I thought I'd share a bit about my recent vacation with my grandma and Forrest, my service dog.

At the beginning of the week, my grandma and I went to Eureka, CA for 3 days, so of course Forrest came too. On our way there, we stopped at a Carl's Jr for a bathroom break and a soda and snack. I went to the register and the cashier started demanding that I give her a doctors documentation that he is a real service dog. I told her that what she was asking for was illegal and told her what she was legally allowed to ask. She said, "it doesn't matter, that's what my manager told me that I have to do" I told her that if she went to the office computer, I could tell her where she can see the official laws. She refused, so we took our business elsewhere. I was so angry and have since talked with corporate and have a message on my phone from the manager apologizing and wanting to get more details about what happened. I am going to have to buy more of the service dog law cards from sitstay.com

Anyways, Forrest loves going on vacation, except swervy mountain roads (so he gets dramamine). This was the first time in a very long time that I did almost all of the trip in my manual chair. He was still getting used to it but by the last 2 times we stopped on our way home he had it down pretty well... just needs to moderate the speed lol. While we were there, we went to the Sequoia Zoo. At the ticket counter, the lady was very friendly, went through the legal checklist of questions and then told us the couple areas he wasn't allowed in. Those areas have loose animals, like the aviary, and that's standard for a place like that. She did tell us that if I did want to see those areas, they could have a zoo keeper stay with him outside.

Watching Forrest watch the animals was so hilarious! A majority of them confused him, and he wasn't sure if he should be afraid of the yak. When we got to the river otters, they flipped out. They decided that they wanted Forrest to be a new friend and playmate. Forrest wasn't too keen on that idea. They kept diving down, waving at him to get his attention, and when Forrest laid down, his butt was against the glass. They started trying to figure out how they could pet him. Everyone at the exhibit was laughing hysterically and they would have continued if we hadn't moved on. I got pictures of it but stupidly didn't think about recording video... that would have gone viral. All in all, we had a great time and it seemed like he did too.

One thing that I noticed, most of the children I came across were great with Forrest and asked to pet Forrest like they are supposed to so I can give him the “visit” command that lets him know it’s ok.  The adults, however, were not that great with Forrest.  I lost count how many times I had to say, “Please don’t pet him, he’s working”  A few times I had to add, “what you are doing is dangerous for me and him”  While I was in the grocery store with him on our way home, I noticed that all of a sudden my chair was being gently pulled backwards.  Some idiot behind me had his arm reached out to Forrest and was calling him.  Really?!? It baffles me sometimes how people either don’t use common sense or just don’t care (I run into both).

This trip was a nice break from the heat and provided me with some distraction from how much I’m hurting.  However, with the large amount of driving we did and the physical stress of going out and about on top of what my body is already dealing with, I definitely “crashed” when I got home.  That’s what I call that period of time, right after a busy, even fun, event (or series of events).  It’s kinda like what happens when someone goes through a high adrenaline experience and then their body is just beyond exhausted after it is over.  For me, my pain levels go way up (which were already really high), conditions that I have that are sensitive to stress flare up (like my autonomic issues) and my body and brain as so fatigued I can barely think or stay awake.  After lots of rest, I eventually recover to where I was before.  Knowing that my body reacts like that means I have to keep that in mind whenever I plan on doing an activity. It means I have to weigh the pros and cons when I make those decisions.  Ultimately, it is often best to get out and do the activity with friends or family because it can provide a mental and emotional boost that will help me in the long run with coping with all my body throws at me.  Yes, I’m going to “pay for it” afterwards, but I’m better off overall.

[thelifeofahumanzebra]

The Adventures of Packing For Vacation When You Have a Chronic Illness(es)

When you have a chronic illness, you can’t just throw your clothes and toiletries in a bag and hit the road when going on vacation. As you can see, my Ehlers Danlos Syndrome, POTS, Bronchiectasis, Asthma and other fun stuff mean I have a TON of stuff to pack. I pack more medication, medical equipment, braces and other various medical treatment/prevention items than both my clothes and “normal” vacation necessities AND my Grandma’s, who was taking me. One thing I did forget to mention in the video is that because I have my service dog, Forrest, I also have to pack all of his stuff like food, toys, dishes, etc. I even have to pack Dramamine because he gets car sick on swervy roads. NOTE: I accidentally put my finger over the microphone on the camera for a bit at the end of the video but you still get the important information. Sorry it’s kinda shaky, at the end of the day, my carpal tunnel can make my grip kinda unstable