Wednesday, January 27, 2016

Cytoxan Round Four - Health Update

Imagine heading to the fair for a day of fun. You stop by one of those fried food stands and purchase a corn dog of unholy length with a very questionable animal product center for lunch. After eating your carnival dog in record time, with the most sugary of lemonades possible to wash it down, you see all the awesome rides. Nearest to you is the Gravitron and the Zipper. With that sketchy meat clunking in your stomach you hop on the Gravitron for a ride; as it starts to spin faster, and faster you realize that the corn dog may have not been a great choice. Your start to feel that sensation in the pit of your stomach as your friends drag you directly over to the Zipper after exiting the Gravitron. Still spinning you hop on the ride and close yourself in, the ride starts to flip, and flop, and flip. Your friends wave over to the ride tech to keep it going! One more round! As that finale cart spins you realize the food was definitely a bad choice. You hop off that ride when your cart opens like a bat out of hell to the nearest trash can. Your body lurches and you heave into that can as if your an Olympic swimmer waiting to take off your platform. Your head is spinning, your stomach is flipping, and your regretting your entire day.
That feeling in the pit of your stomach, that moment of nausea as you heave into the trash can is about 1/10th of the nausea you experience during chemotherapy -- except it's for about 4 straight days. 

Round four of Cytoxan was Friday morning, and by Friday evening I was puking over the side of my bed. "Yay for chemo! Only eight more rounds to go!" Said Chanel sarcastically. The next four days continued as such, except this round was also graced by explosive, fiery stool (I honestly thought I had C. Diff again.) Oh and don't forget the horrendous bone pain, almost like someone is drilling into you. Chemo is just awesome. At least my new nausea med made the few days of misery somewhat more bare able than my last round. At least 40% less vomiting, which is actually a huge improvement. Also, the Valium helped me sleep through most of the first 72 hours so that was nice. I didn't leave my bed until Tuesday when I started to feel a little better. It's amazing how you wake up on the fourth day and just feel alive again. I am still continuing to see improvements from just the first few months of treatment, so I am all for this year of torture if this trend continues.

I saw my Rheumatologist Wednesday morning as a basic follow up. She wanted to review my recent appointment with my Scleroderma Specialist, and find out how I was doing with the Cytoxan infusions. She was glad to hear that I would be starting Physical Therapy next week, and wanted to run some blood work to check my inflammation markers. Hopefully I will receive results in the next few days from both her appointment, and my appointment from last week.

Wednesday, January 20, 2016

Hope On The Horizon -- Health Update

Today I saw my Scleroderma Specialist from UCLA. I always highly anticipate his appointments for a few reasons:
  1. He is by far the most knowledgeable physician on my team when it comes to my disease. 
  2. He catches all the odd results from my test and procedures my other doctors seem to miss. 
  3. He is a hard hitter, and I like that. Facts drive the visit -- not sugar coated embellishments.
Today was a three month follow up to go over my last set of procedure results, and check in on how my Cytoxan infusions were going. Everything seems to be stable currently, no dramatic decreases in health vitality from where I was when I saw him in October. He reviewed my last PFT, Sleep Study, and Autonomic Function Test. All of which seemed to be read in concurrence with my other physicians. He did notice however that my Sleep Study showed I have a form of Myopathy; a disease of the muscle tissue. While he didn't divulge into details about the type of Myopathy, or why he believed the test presented that, I have no doubt he is right. I have a history of a muscle disease that has seemed to elude my doctors since day one of my diagnosis. It could be a solid factor in why my airway continues to have trouble staying open when I sleep. We also saw a drastic increase in muscle weakness this appointment during an in office strength test. I could almost not at all push against force with my arms or legs. I have been noticing growing muscle fatigue in my day to day life and was not surprised by these findings. My physician decided twice weekly Physical Therapy would be extremely beneficial to regain my strength over the next eight weeks. 
We spoke regarding my Cytoxan experience over the last few months, which as you all know has been turbulent. We decided that due to the severity at which I was vomiting my last infusion I will not make it up to the highest dosing. My body just cannot handle that last 250mg jump to the next tier -- and I am perfectly fine with that decision. lol Unfortunately that means I will stay just as sick as I was during my last round for the next 9 months, but no sicker! (Though I am not sure if being sicker than that is even possible.) Thankfully he also prescribed a new nausea med since the current medication (zofran) wasn't impacting me seemingly at all! We will be trying Granisetron which was specifically designed for chemotherapy patients. Woohoo! I also was prescribed Valium by another provider if all else fails. haha At least I can sleep through feeling like crap!
Last but not least, we took a heaping help of blood work, which I honestly didn't even ask the reasoning for. By the amount of vials I am sure it is something specific though. I guess I will find out when I get my patient visit summery, and test results in about two weeks. I did had my favorite Phlebotomist today which is always a treat! She is my age, and I just love chatting with her -- we may have chatted a little too long though as I left the room and there were at least 4 patients in line ;) Oops! 

In other exciting news, my oral intake has been really coming along! Squishy, soft foods like ice cream and yogurt have been easily sliding down my esophagus, and successfully staying put! Luckily, my stomach still has a enough peristalsis to move foods like this through. (Though if it has any acidity it will come right back up and pain me for hours.) Unfortunately I completely forgot about the whole SIBO (Small Intestinal Bacterial Overgrowth) interaction with dairy when I undertook this oral excursion! Dairy is basically super food for the bacteria, so you can guess how my day ended -- well actually the entire next day if we are being specific. Let's just say there wasn't even enough time to pull over the car. Yikes. So I am on the hunt for pureed foods with no dairy, or acidity. Any ideas? At least I am making progress even if it's one step forward, two steps back right? 

I thought I would update you all on my home infusion experience as well. So far I have met some wonderful healthcare professionals. Each week a new nurse comes to my home to access my implanted Power Port with a Huber needle. This is a sterile procedure and must be done exactly right. The pressure is on! lol Once it is accessed the needle stays in my body for the next week as I run infusions of Saline to keep my body hydrated. (Yup, I set up all the equipment, and flush the Port just like nurses do at the hospital! Patients receive training the first day home health care begins.) So far home infusion has been amazing, and I absolutely love running my own hydration bags! The convenience of not leaving my house is wonderful and lets me accomplish many things during that time where I would otherwise be sitting in the hospital. Below I added some photos of my day to day supplies to give you a better idea of what infusions look like at home!

The giant Huber Needle that lives in my chest -- Nope doesn't hurt!

The IV pole I drag around my house -- and my rad jellyfish!

It is odd to see medical equipment like a full IV pole outside of a hospital isn't it? Sometimes I scare the UPS guy when I answer the door all hooked up! lol Chemo is Friday so don't expect to hear from me for a while! I will be puking, and hibernating. Sounds fun huh!? I have an appointment with my primary Rheumy next week though so I am sure you'll see an update by the end of January! 

Saturday, January 16, 2016

Dear Sir In The Honda Accord

You have illegally parked and stolen not one, but two handicapped parking spots. By parking in the bright yellow crossed out section of pavement you have blocked off the accessibility for anyone who needs to remove medical equipment from their vehicle. Those lines you so cleverly wedged your sedan into are there so disabled individuals have plenty of space to carefully remove their devises without hurting themselves, or others in the process.

Does it look like someone could even open their wheelchair accessible van door, let alone lower a wheelchair onto the pavement? The answer is no. Does it look like a patient could lug their 4 foot oxygen tank our of their door without hitting the side of your incorrectly parked car? The answer again is no.

You have taken away a day at the mall for two individuals who are now unable to park. The worst of all Sir, is that you yourself had a handicap placard hanging from your rear-view mirror. Knowing what these precious spots were for, and how much freedom they can bring to disabled individuals, you still chose to take park illegally.
Did you stop to think about those other cars already parked there? What if they had to wait out in the rain for you to return so they could get their equipment back in their vehicles; unable to simply leave the mall after a day which probably caused a good amount of fatigue because of your decision. I am disappointment that someone who claims to need an accessible stall chose to set such a bad example of those who wield handicap placards.

This kind of behavior is the reason why many of us are persecuted by society; why patients get talked down to, and accused of "faking it," even when they have a placard. Your wish for a spot closer to the mall entrance proved to everyone who saw your car parked on those yellow lines that handicap spots are abused, even by those who supposedly use them legally. Your negligence to follow simple parking guidelines encourages observers to judge those of use who actually need these parking stalls.
Next time sir, please be respectful, and try to think of the implications your choices have on others, and the message you are sending to onlookers.

Thursday, January 14, 2016

When Opportunity Knocks -- Update

Wow, it has been such an incredible week! I have been slammed with amazing opportunities lately, and have been so excited to share them with you all.
I received the invitation to give a lecture to 30+ students Wednesday at a local college. (I know right?!) I felt like a true educator once again, having a room full of students listen to my every word with interest and reception. I wore a blazer, and even had a power point like a true professional speaker. :) I focused mostly on the mechanics of autoimmune disease, then divulged into the specific affects of Scleroderma on the body. After a 45 minute presentation we had a 30 minute question and answer period, and they soaked up every minute! It was wonderful to hear responses afterwords such as, "wow, I never knew autoimmune was deadly! Our books don't cover that." "You may be the best guest speaker I have heard my entire student career!" (That last one actually made me quite giddy! lol) My lecture seems to have truly impacted these students, and that makes my heart so happy! They will all be incredible nurses one day to some very lucky patients. I've got to say, public speaking may be one of my absolute favorite activities! it awakens both the performer, and teacher in me. 

Me looking very professional!

I have also been quietly in the works with a few companies on testing out, or relying my input on some incredibly unique products to ease the life of patients in the near future. I have been on the phone with companies this week from all over the world. (Seriously, I was on a conference call with the founder of a revolutionary feeding tube from Israel!) One of these products being an exclusive form of cannula that will transform the way oxygen is delivered to its users. Check out my review video for the upcoming Oxy-Breather below!

Lastly, I was once again invited to speak at the National Scleroderma Patient Education Conference! Yay! So if you would like to meet The Tube Fed Wife, join me in New Orleans this summer to learn all about Scleroderma. What is incredible to me is that ALL these opportunities have stemmed from sharing my personal story with illness. This blog has opened doors to a world I could have never imagined, and I could not be more grateful! Thank you all for reading, and supporting my journey to spread awareness, compassion, and understanding. Have a lovely week!

Friday, January 8, 2016

What I Cannot Physically Attain Doesn't Make Me Inadiquate

"Disabilitythe condition of being unable to do things in the normal way." 
"Disabilitya disadvantage or deficiency, especially a physical or mental impairment that interferes  
                  with or prevents normal achievement in a particular area."

Disability is rather, a definition to describe those who are different than the social norm. We are not "unable to do things in the normal way," as the way we do things are our normal way. We are living to the extent of our abilities just as everyone else. We are not prevented from "normal achievement," we just define what an achievement is differently. While you count a 10k as an achievement, we may count walking a few steps; it's all about perspective. You may walk while some of us roll, but that doesn't mean we are "disadvantaged." You may eat by mouth while some of us eat through tubes, but that doesn't we are "deficient."  
What my body cannot physically attain doesn't make me inadequate - it makes me adaptive, and resourceful. 
Those are two traits generated by an individual who is definitely not "impaired".

Yes, many times having a "disability" puts you at a disadvantage for equality.You see this occur in personal, educational, and professional settings. We are denied opportunities given to those who would be categorized as "functioning normally." However, that does not mean we are lacking and limited, that is just the way people see us because of our physical or mental distinction. We know we could perform that job, romance that relationship, and earn that degree, if only we were given the proper chance. So is the definition of disability an accurate representation, or does it seem to be a neologism created for incorrect classification which provokes separation? We may not do things customary to society's views, but we still get them done.

Individuals facing disability are in fact very able; able to make the best of our situation, and live with the cards we have been dealt. If that isn't considered "normal" than I don't know what is.
Yes, I am very aware of the fact that the word "disability" simply describes a condition that makes everyday life tasking -- and yes, I use the word "disabled" to describe myself, and other individuals hindered by disease. I purely thought the definition found on these sites needed some proper clarification as they sparked my blogger intuition. This post undemanding implies that the disabled community is living their normal, though it may not be yours -- life is always up for interpretation.