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Preparing to Fly with Complex Medical Issues

One of the most stressful things to do is travelling, now add some needles, medical liquids, and a suppressed immune system to that and flying goes from stressful to down right scary. As I prepare to fly to the rare patient advocacy summit taking place this week in California I  figured I would share what I have found works the best for me when traveling.

Before my first flight with a feeding tube I looked up the TSA policies on medical liquids. Basically as long as you notify them while going through security and separate them from the rest of your things you should be allowed to take them through without issue. No doctor's note required. Same goes for needles and syringes and inject-able medications. You may want to print this policy out or have easy access to it on your phone in case you encounter any issues although I have yet to have a problem.

A few days before your flight call up TSA cares. They will set you up with a TSA specialist to help you through security. This is th…
Recent posts

Rituxan Infusions: Round 1

I have now actually completed both of my Rituxan infusions for this round. This was probably the most frustrating round as I was trying to figure out how I would feel after each infusion so I could plan but everyone I talked to seem to have different experiences with the medicine. SO my disclaimer is my experience may be different from yours.

Infusion Day 

Both infusions were scheduled for 8AM since this medication takes a pretty long time to infuse and if there are any reactions it takes even longer so I was the first person at the infusion center. The infusion center is the same one I used to go to for IV fluids before I got my port 2 years ago (although it has since moved from a building across the street to inside the hospital) so I knew a good amount of the nurses and it was nice to catch up. One of the new nurses I knew as well because she was an RA in my building freshman year, small world.

For the first infusion my port was already accessed but for the second infusion they had …

Insurance Battles

Disclaimer: This post focuses on the difficulties I had with my insurance company recently to get treatment. And while it is easy to blame only the insurance companies for denial of coverage the drug companies are also at fault here for charging exuberant price and charging different amounts in different countries.

Many of my close friends know how frustrating this summer has been. As you can see from my last post I have been flaring since student teaching in the spring. In the past it was hard to control flares because we didn't know the underlying cause/disease and therefor the appropriate treatment. This is no longer the case. I have a diagnosis (plus) and awesome team of doctors who come up with aggressive treatment plans. Theoretically when one treatment starts working and my doctors change the treatment plan I should be able to start the new treatment and hopefully be on my way to feeling better. However when that treatment cost $10,000 or $20,000 and off label it is not tha…

Cellcept, Methotrexate, and Rituxan, Oh My!

So while it has only been 3 months since I last wrote instead of 6 months, a lot of things have happened with my health. After student teaching I refuse to be on prednisone for a little while. That didn't go so well and there was a month full of ulcers. I couldn't talk, I couldn't eat, I couldn't sleep much. I was not a happy or pleasant human being, which is all the things I hate about being on it. At this point they were running down my throat and I could not swallow. So after a month of this it was time for camp and that meant I needed to be able to talk without wanting to cry and I gave in to the steroids and have been on the highest daily dose yet ever since. Also Behcet's now seems to be the responsible disease for at least this mess.


Meanwhile my ability to swallow liquids has also struggled. Most of the time it was pretty solid but more times than I would like I cannot seem to get the coordination down and it seems to go down the wrong pipe and cause a lot …

A Health Update

It's been six months since I last updated my blog so this will be just an update post. I did not even do a year in review for 206, probably because of the last two months being so rough on our country I could not bring myself to think about it.

Since I left you a lot has happened. I finished my last semester of college during which I student taught and then did the whole graduation thing. I also have a lot going on medically.

Student teaching is the reason I did not really blog this past semester. I loved it so much but it was really hard and exhausting. All my energy went in to my students and my assignments as I had to build my senior portfolio. I still cannot wrap my head around the fact it is over and I am a college graduate.

Somehow during student teaching I stayed fairly healthy. I only caught one upper respiratory infection. Of course that was a whole ordeal with breathing issues and a fever which sent me to the ER and an overnight hospital stay. However I only missed one d…

Why the ACA (aka Obamacare) Matters

This may be the only place I refrain from talking about politics, which my friends and family can vouch for as most of them are very close to unfriending me on Facebook due to my seemingly never ending post on Facebook about the current political happenings. One reason I am taking to my blog right now is because my blog is all about my health and my health is now being effected by politics. Both in the most immediate sense of how stressed I am and the toll it has taken on my body (PT the day after the election was rough to put it mildly) and the more theoretical looming idea of the possibility of the Affordable Care Act being repealed.

There are so many ways I have benefited from the ACA. Quite honestly it is the reason I currently have health insurance and as an extension of that, healthcare. Fist off my parents are self employed therefore we purchased our health insurance off the exchange (and this year I will have my own exchange plan so I have one in PA). Next off this semester du…

When You Know Your Body Best

Anyone with a chronic illness can probably tell you they know their body better than any medical professional. To say that is true is an understatement. Look at me, I probably knew at age 16 or 17 I had an AI disease but it took years for doctors to catch on. I knew steroids where helping my gastroparesis a year ago but no one really believed me until I was diagnosed with Sjogren's. This is not an uncommon phenomenon.

When I get a fever it only takes me a few hours to differentiate between an autoimmune fever and something more serious. However due to having a port the protocol is any time I have a fever of 100.4 or higher I am supposed to go to the ER. I have pushed the limits on this a couple times, making appointments with my PCP instead of going to the ER or waiting a few hours to see if it will go away. This approach has gotten me a few lectures but never caused me harm since I know my body.

Over the summer there was one incident where I was at work when the fever came on and…

A Little Rant About the Past Couple Weeks...

There is a lot I have to write about here. I defiantly need to post a recap of the Global Genes Summit I went to a couple weeks ago but I am waiting for some things on that to come together.

Since then my life has been a little hectic to say the least. I came back from the summit a little early for my senior homecoming game and it is a good thing I did because there was about 10 hours between landing at the airport and being in the ER. Some how my tube seemed to do something odd. Cue me doubled over in pain but waiting till my home nurse was coming for a port access any ways. Of course when she came she called GI and it ended with me going to the ER and being admitted. I ended up being inpatient for 3 nights till interventional radiology (IR) could get me in for a tube change.

Meanwhile during this stay my port started acting funny. It was being super sluggish and hard to flush to the point my nurse had the IV team come and put TPA(a powerful blood thinner generally used in strokes bu…