So… it was 91 degrees Fahrenheit yesterday. That’s about 33 Celsius if anyone reads this who lives in a place where that is more common (as in ANYWHERE but in the US… ). About 9 last night a cold front went through. Windy and … Continue reading
I am tired, but I’m feeling so much better. The shots aren’t comfortable but they are so worth it. My wrist is being weird, but I think its weirdness is more because it is what is is… my boo boo wrist.
Posted in Embrel
Okay… not that anyone is getting as sick of this flu thing as I am… but now that I’m kind of feeling semi human again… it is time to pull together some kind of logical series of events. Maybe someone will read it and learn from my adventure.
Yeah… I’m feeling more human… it is an adventure…
Wednesday I was feeling like I had a cold… a little congestion… kind of yukky… nothing big… just a cold. Probably not. Ah for 20-20 hindsight… Got my Enbrel shot… which went surprisingly well this time. I’m getting used to them and the side effects weren’t even too yukky…The weird ice thing we had going on meant I worked from home so it was cool.. took my Enbrel even earlier in the day.
Thursday (YOGA day) I went to work. I had stuff I had to get finished and I was so wanting to get it done and get to my Yoga class… I look forward to Thursdays and Yoga. By lunch time I knew there was no way I could go to yoga. I felt horrible and it came on relatively quickly. I got sent home to work from home and try to get a little rest…
Friday I was working from home because I still felt crappy. I felt bad enough I actually caved in and made a doctor appointment despite the fact that my ‘regular’ doctor wasn’t available. It usually has to be pretty bad before I decide to cough it up and go to the doctor. It was pretty bad.
No fever… interesting…. but when they stuck the giant ear-tip up my nose and it came back positive I was less than thrilled. The new doctor was kind of concerned about the fact that I’m on Enbrel and I had a flu shot and still tested positive and having a compromised immune system… not so great.
Got a script for Tamiflu… and instructions to call my Rheumy (Sean… her nurse) to verify.
I made it into the Sean queue just a scooch under the “we leave at noon” deadline. I’m not sure if I’m glad or not. Sean’s concern was kind of scary. He asked if I was having symptoms or if I was exposed to someone with Flu or… he wasn’t happy when I told him I tested positive already… Don’t take Enbrel shot… too late… Don’t take the next one until I feel 100% for 3 – 5 days (really? 100%? I haven’t actually felt 100% in HOW long?) Eesh.
Boss man gave me permission to rest the rest of the day and get ready to do maintenance Saturday. Really?? eesh.
MASSIVE headache on Saturday. I feel really guilty because I have been worrying bear so badly. He was really rattled and I feel really really bad about that. I hate when I worry him.
Today we went for half of our Sunday walk and it was great… and it was awful. I was exhausted by the time we got home… but it was better.
Snuggled up with Peanut (she is sprawled on her back, feet in the air, all comfy) thinking that I’m really really glad that it is work from home day. I feel awful and this whole “catching a cold” while on … Continue reading
Week 4 of Enbrel. This week I got a call from my insurance company asking if I knew about the Enbrel Support Card… and then tried to get credit for THEIR insurance company having anything to do with having that … Continue reading
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Last night was Methotrexate night. I’m totally used to those shots and (thank goodness) for the most part I don’t get any side effects that I used to get except once in a while sore spots in my mouth (and … Continue reading
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Okay, today (again?) I decided that I don’t need anybody’s help figuring out how to write the great American RA Story. I have asked for advice and the questions go to /dev/null (the great bit bucket in whoever it is’s … Continue reading
I am done feeling sorry for myself. It usually doesn’t last long and everyone who poked and prodded me helped a lot. I wrote quite a lot today and after the rain let up I decided that I really needed … Continue reading
Okay… so much for psyching myself out… it was incredibly anit-climactic… Yes Sean (bless his heart) warned me about all of the wonderful things that I might be able to expect…
Get sick more easily (OH BOY!)
— wash your hands and use paper towels to shut off the water in public bathrooms
— don’t open doors if you can sucker someone else into it
— don’t push the buttons on the elevator…
— hand sanitizer is your friend (OH BOY)
If you have surgery… stop taking embrel a week before and wait until your surgeon releases you to start it back up…
If you have dental work other than cleaning… or maybe it was smiling as you pass a mirror… something like that anyway… stop a week before and wait a week after before starting it again
If you catch a cold… go see you PCP and get checked out and wait a week after you are WAY better before starting back up again
If you get a bacterial infection… go to see PCP and get meds… a week after meds, you can start embrel back up
I will let you hash out the… if you have stuck the needle in a clean spot on your tummy and you pull back and see blood… take it out and throw away $800 worth of meds and get a new needle… hash that one out with your doctor or your doctor’s nurse… I will definitely be listening to Sean…
The injection site rash that can be from a day to a week can be a pain in the… injection site… =)… but benedryl is your friend.
Sean also managed to mention one other thing that I sort of didn’t quite realize… people comment on things if they either REALLY REALLY are angry (which is what typically happens) or are really REALLY thrilled about something (which happens way less often because they don’t think about being thrilled…). He also said that there are lots and lots of bad things about him out on the internet because he is Dr Booth’s gate keeper and he takes the blame for things that he does on her behalf… because it is in the patient’s best interest.
It was kind of a duh-OH… DUH kind of moment for me… Dr Booth has, more than once, comment on how I’m a weird patient… I tough it out and do what I need to do to get stuff done… I don’t generally call Sean unless I am in A LOT of trouble (like I can’t raise my arm above my head without thinking I’m going to pass out… or like I can’t bear weight on my leg without it making my eyes water and my breath catch… you know… the little things) so I’m not really a patient that is much trouble and when I do call there is most usually a REALLY good reason… so I guess I never really realized that there are patients that are a total pain in the arse for them… or that those patients want it NOW… (I want a feast… I want a bean feast… don’t’ care how, I want it now… hello Charlie and the Chocolate Factory)… I know people like this… I guess we all do…
SO… In the interest of being one of the OTHER people (the happy ones) that occasionally don’t sit back on their behind ends… let it be said that I could not be happier with either Dr Booth (who takes her time with me even when she is running behind… who doesn’t let me settle for… aaaahhh I’m mostly good… who has a great sense of humor and enough REAL knowledge to see all of us through) or Sean her nurse… who is honest and gives you the worst case but is honest enough to tell you as much… who laughs at reality and will be brutally honest with you even when he knows it totally isn’t what you want to hear. I’m glad I didn’t kick him today and the shot (while it still is a little ouchy) wasn’t nearly as bad as I thought it would be.
And now… I’m sitting here listening to Raffi and tough it through my last day of pager duty! I bough Chi Walking from B&N and now, I am going to use my Embrel and Chi Walking to get me through the Austin Half Marathon in just about 6 weeks!!!… Watch for me… I will be wearing the purple hoody that says Seizures Suck!