Skip to main content

Quick Up Date

Remember that time when I used to blog? Well I am going to attempt to do that again. Lots has happened since my last post and I am not sure how to fit it all in but I will do my best to try.

On the POTS/IV fluid front I finally got a port! This was very exciting since it was taking multiple tries to get IVs in me more often than not. I am also able to get IV fluids 3 times a week at home now and if I need an extra one I can do it myself with no ER needed. The port probably deserves it's own post, but in short I love it.

My Port is a Pretty Purple!


Unfortunately after over a year of pretty calm joints a cold triggered a major flare. My joints are currently worse than they have been since high school. My rheumy was hoping a burst of Prednisone would calm everything down, and it did till I stopped taking it. So her office managed to fit me in for yesterday and she put me back on Prednisone and prescribed Enbrel. Enbrel in a biologic medicine that is taken by injection once a week. It work by suppressing certain parts of the immune system. Hopefully my insurance will approve it soon and I can start it next week.

^What I get to stab myself with weekly.


Right now I am trying to focus on myself and not constantly over doing it like I have a tendency to do.

Comments

Popular posts from this blog

The Swollen Wrist

This morning I woke up to a red painful swollen wrist. My right wrist was not happy or useable for the better part of the morning. Of course my mom wanted to make a rheumatologist appointment for this week but I really did not think it is worth it. Since I am now in the 2 week period before my hip surgery I can not take anything but Tylenol anyway (no voltaren or fancy cream), so there is not a whole lot that can be done. We finally settled on me going to my GP (for the 2nd time in one week as I had a pre-op appointment with him on Monday), and I took a picture so I can show my rheumy at my next appointment. I managed to get an appointment at 11AM because my GP was in the office this Saturday. By the time of the appointment my wrist looked pretty normal, although I had the picture so he could see something was up. He had it x-rayed just to rule out any issues non rheumatology related, and as we both guessed the x-rays came out normal. My Lovely Wrist this Morning I was left wit

The Perfect Body?

Today I am going to write about a taboo subject- body image, and how living with chronic illness/pain has affected it. I get told how great my body is a lot, I am tall and fairly skinny. Not to be egotistic but I look pretty good in a bikini. I should love how I look. I should be confident of my body, after all I just bought a pair of size 2 jeans. Yet I still struggle with loving my body. My New Jeans! In middle school I thought my legs were fat, that was when I had muscles from horseback riding, today I miss my muscular legs. My thighs tend to be two different sizes, the left one is almost always smaller. The reason for this is simple, my left quad has atrophied from months of limping and being on crutches when I was 15/16, at one point it was so bad my doctor measured it and the difference was a good 2 cm in circumference. Today they are almost the same size, and probably look the same to anyone else, but to me they still look different. If you haven't guessed it yet,

30 Things You May Not Know About My Invisible Illness

I am doing this post for invisible illness week which is this week.  1. The illness I live with is: Enthesitis, Amplified Musculoskeletal Pain(AMP), and Uveitis 2. I was diagnosed with it in the year: Uveitis-2012, Enthesitis and AMP-2013 3. But I had symptoms since: 2006 4. The biggest adjustment I’ve had to make is: I have had to learn I can't do everything I want or everything that other people my age are doing. 5. Most people assume: I am perfectly fine or I just have osteoarthritis and not an autoimmune disease. 6. The hardest part about mornings are: Getting out of bed, doing my hair, and figuring out what outfit will be the most comfortable for the day (and accommodate any swelling I may have) 7. My favorite medical TV show is: Grey's Anatomy (and Scrubs even if it is no longer on) 8. A gadget I couldn’t live without is: My Freezer 9. The hardest part about nights are: Not being able to fall asleep in a comfortable position and waking up in the middle of the night in p