Medrol vs Prednisone...

If you’ve never had the pleasure of taking ‘The Devil’s Tic-Tacs’, aka Prednisone, count your damn blessings. When I say that shit makes me crazy, I’m not kidding. No sleep, extreme anger, roller coaster emotional states, hunger on a level I cannot even put into words, & major, major aggression. I refuse to take it ever again, I’d rather be miserable & in pain from lupus issues than take that shit. 

The oral surgeon has given me a prescription for the steroid Medrol because of how badly my body is reacting to having my wisdom teeth out. I’ve got inflammation on a major way from the surgery. Add in the fact that the surgery has set off a lupus flare, & y’all see where this is going.

I’m paranoid about taking this Medrol stuff. I probably shouldn’t be, but any drug that has any version of ‘predni——’ at the front of the generic name makes me worry. I’d rather be in pain that take any version of Prednisone type shit, no matter how bad the pain is. I really did call Prednisone ‘The Devil’s Tic-Tacs’ to the dentist & surgeon, & told them how badly it messes with me. I asked if Medrol was going to do the same thing, & I was told it shouldn’t…but there was a small possibility that it could. 

If there is a small possibility something could happen…I am always in that .00000001% that doesn’t react ‘right’/heal ‘properly’/etc.

Somebody pat me on the head & tell me whether or not I’m being paranoid/suspicious/skeptical.

I hate hate hate hate medications that have the ability to change my period. All through my illness my period has been the only regular thing about me. It was always there on the days it was supposed to and I was fine with it.
So when pills mess my period up, I feel like my life is out of order.

Go away steroids.

I am 9000% sure

That the wake-me-up-crying-writhing-in-pain Charlie horses I experienced the last two nights are directly related to the steroid pack I was prescribed for my asthma.

So I drank so much Gatorade today to replace the potassium/electrolytes.

Thank god this morning was the end of the pack. Maybe one more bad night tonight and should be good again.

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{Oughout|You|Ough|Circumstance|O|United}. S. News and World {Statement|Record|Review|Survey|Document|Article|State|File|Account|Assertion|Describe|Declaration|Ranking|Have|Convey|Storie|Say|New|Send|E book|History|Insist|Submit|Booklet|Description|Claim|Send out|Analysis|Documentation|Ebook|Comment|Study|Track record|Tell of|Complain of|Credit report|Ground-breaking report|Information|Insider report|Transmit|Deliver|Story|State they experience|Score|Expose|Feel|Give an account|Guide|Experience|Write up} Names UNF ‘Best Online Bachelor’s’ Program in the Nation

Feb262015 United {Method|Approach|Means|Technique|Manner|Strategy|Option|Solution|Process|Course of action|Procedure|Manner in which|Path|Tactic|Method by which|System|Means by which|Opportunity|Style|Manner by which|Direction|Route|Fashion|Far|Mode|Much|Alternative|Plan|Course|Manner of how|Road|Best way|Avenue|Choice|Manner for you|Concept|Idea|Procedure used|Form|Chance|Method to|Tool|Strategie|Medium|Possibility|Well|Journey|Ways|Are you able to|A lot} Campaign Kick-off CarnivalThursday, February {twenty six|21|dua puluh enam|28|18|30|19|29|23|22|24|20|27|25}, 20152: 30 PMFeb26FESTofALL: Lip {Synchronize|Connect|Connection} CompetitionThursday, February 26, 20158: 00 PMFeb27The FESTFriday, February 27, 20156: 00 PMFeb28Osprey Tailgate ClassicSaturday, {Feb|Feb .|March|January|June|May|April|September|T|October|December|July|August|November} 28, 20153: 00 PM

UNF students polling voters on {town|metropolis|area|urban center|location|place|community|locale|destination|city limits|state|urban centre|township|metropolitan|capital|local|metro|site|county|region|urban|settlement|bility|village|capital city|center|downtown|in-town|municipal|small city|urban world|municipality|town you live|london|primary|vicinity|fashion|for city drive|manhattan|nyc|work|capital of portugal,|that has|new york city|locality|big city} election

UNF students are polling local residents about upcoming {town|metropolis|area|urban center|location|place|community|locale|destination|city limits|state|urban centre|township|metropolitan|capital|local|metro|site|county|region|urban|settlement|bility|village|capital city|center|downtown|in-town|municipal|small city|urban world|municipality|town you live|london|primary|vicinity|fashion|for city drive|manhattan|nyc|work|capital of portugal,|that has|new york city|locality|big city} elections. WJXT Ch. 4 {talked|chatted|spoken|gave a talk|speech|mention|gave} with Dr . Michael Binder, {politics|personal|political electoral|electoral|community|governmental} science and public administration {associate|helper|asst|admin|tool|connect|coding|supervisor|person working in the store|person working in the shop|shop assistant|témoin} professor, about polling and what {this individual|he or she|they|he / she|your dog|the guy|the person|she or he|she|that he|your better half|or perhaps|that she|my friend|or even|your husband|my husband|the doctor|your lover|you|your puppy|your guy|the dog|that they|your man|he or|he still|the man|the individual|it|this person|this guy|your ex boyfriend|a person|which he|your boyfriend|your ex|raam anand|proving|definitely|the narrator|tom|he also|afterwards|appropriate|correct|later on|liked|the affected individual|cherished} hopes to determine.

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Holding On And Fighting Back

The day after I was discharged from Jersey Shore University Medical Center I was scheduled for my 3rd Entyvio infusion treatment at Robert Wood Johnson University Hospital.  I was happy I was getting the next treatment, but at the same time it was in the back of my head that this treatment could possibly not help me.  I had two infusions already and it was extremely discouraging to have ended up in the hospital for 12 days not that long after my second infusion.  My own doctor even brought this up, and trust me, it stung a lot hearing those words out loud since prior to that I was only ever thinking it.  With me….You know things are bad when I am 1) agreeing to IV soul-medrol/steroids/oral prednisone and 2) I get quiet, very quiet.  Bottom line, that 12 day hospital stay was a kick in the stomach for me but I needed to be there.  I could openly admit that.  

I thought about all of this on my way to my appointment at Robert Wood Johnson.  I went through the outpatient admitting and walked through that huge hospital finding my way to medical day stay.  I walked in and was greeted by all the same nurses I have seen the previous times I had been there.  I let them know I had only been discharged the day before from the hospital due to Crohn’s related issues.  Since I had just been discharged the day before from a different hospital they had to call my GI at Robert Wood to be sure it was okay to still receive the treatment.  His fellow called back saying they weren’t ever told by my local GI that I had been in the hospital, but from the information they had, they saw no issues with me getting the treatment.  With that I felt a little bit of hope since they would not put me through these treatments had they thought this would not help me.  But I still needed to physically feel results to BELIEVE it.  My positive outlook is telling me to keep holding on, all things are possible.  My crohn’s sucking energy is telling me I need to be prepared for a fight!  Either way…I was holding on and I was prepared to fight my way through this….SO TAKE THAT CROHNS.

Since I received treatment I am happy to say that I have been getting better.  I did have the typical Entyvio hangover (side effects: joint pain, headache, general aches and pains).  That only lasted about 24 hours.  By the weekend I was feeling well enough to hangout with my niece and babysit for a few hours. My niece just turned 3 (Feb. 24th).  Since this was the first time she saw me since before I ended up in the hospital she had lots of questions about her Aunt Caryn being sick and having a boo boo in her tummy.  I explained it the best I could and reassured her that I was okay.  My love for my niece is beyond anything I could ever describe, so for her to be concerned about me caused me to take a bit of a step back.  She was just starting to understand that I get sick from time to time and I could tell she was trying to process it all and put the pieces together.  I also know my niece loves me very dearly.  Anytime I see her, her beautiful eyes light up the room and without fail she always runs from where she is to give me a big kiss and a hug.  The world could be ending and this little princess wouldn’t have noticed anything but me.  Not saying that just to say it, ITS TRUE.  And I love that.  It makes my whole life seem completely perfect in those moments.  My only hope is that she never sees any other way.  I may have Crohn’s and be sick, but I don’t want my niece associating her most loved aunt with always being sick.  

Like I said previously in my last post, I had decided I would not go back to work until March 2nd.  I needed to give my body time to heal and get better.  This decision is never easy and the decision is never made without a few tears and the occasional “why me.”  My purpose in life is semi-revolved around my decision to be a nurse and how can I be a nurse if I am sick myself?  I do always eventually realize that I have to take care of myself before I can care for others.  It sounds cliche’ but IT IS NOTHING BUT THE TRUTH!  

Tuesday, the 24h I saw my local GI.  She walked through the exam room door and immediately smiled saying, “You have your color back in your face!”  I smiled and said, “Yeah, I actually am feeling so much better than I was.”  We discussed every aspect of my 12 day stay.  Her major concern, even at this moment, is the fact that I am on 3 different immunosuppressants.  I can’t afford to catch an infection or virus.  It would set me back majorly.  So we made a plan to try and get me off prednisone sooner - but the moment I get those god awful symptoms again we need to be more cautious.  I agreed with this and thankfully so far the taper is going smoothly at 30mg.  But we won’t really know how my body will react until I am under 20mg.  We discussed Entyvio.  Her hopes is that my other GI can shed some more light on whether we should be concerned that I had that major flare and if Entyvio is really the best course of action.  My gut (pun not intended) feeling says it is, but I see this doctor in March for a follow up and I will find out a lot more then in that aspect.  My doctor also talked about this disease being relentless in that one area of my intestines (reminder - I only had surgery in August 2013, the disease is in the very site the surgery was performed), but she is also concerned another “not usually” major GI issue might be causing things to be the way it is right now.  If that is the case, all we can do is treat the symptoms of that because sadly thats really all we can do.  She agrees I can’t exactly live like this because its not a good quality of life.  But she also is stuck.  For now we are keeping our fingers crossed that Entyvio and a few more weeks of prednisone will continue to help me and we won’t have to figure anything out for the next possible issue.  

I know some may be reading this and thinking I need to see other doctors.  The thing is I already have the 2nd opinion doctor, hence the doctor I see at RWJ that prescribes the Entyvio.  This 2nd opinion doctor is the best of the best.  No.  I MEAN THE BEST.  I am getting the best care I could possibly be getting right now.  This is my reality.  I have accepted all of this.  I accept the days I feel awful.  I accept the days I feel wonderful.  I ACCEPT THE FACT THAT THERE IS NO CURE, JUST TREATMENTS.  As long as I have a plan, my family, my friends and some sense of normalcy….I WILL KEEP HOLDING ON AND FIGHTING BACK.  

My message to those who are currently struggling with any disease (or even the normal hardships of life):

Make plans.  Make dreams.  Take ownership.  Fight.  Don’t give up.  Find any and all reasons to smile and laugh.  Cry when you need to, but not out of hope for sympathy….cry because you’re frustrated and move on to the, “this is what I am going to do next.”  Fall apart, but be sure to have people around you to help pick up the pieces.  At the end of the day, no matter what you faced that day, you must be able to go to bed at night and know you did the best you could possibly have done.