Day 1

I can say after one day of antiviral medications, the next 11 weeks are going to be miserable. By noon all 11 pills were in my system and it didn’t take long to feel the effects. I was determined to work on my program evaluation and thankfully I did get a few pages written. My goal tomorrow, pending feeling better, will be to get a few more pages done.

I want to be able to focus on my literature review on Sunday. Time management seems to be the key these days!

Off to get a bit more done!

And it keeps on coming!

Well I will say….that it seems as if the problems just keep on coming!!! 😦 I had a very long drs. appt today and it was decided that I have to do a 12 week (once a week) dose of Isoniazid and Rifapentine (YAY…NOT!). This cocktail is approximately 8 pills taken over 6-8 hours. Once I successfully complete this treatment, then I should be able to start Orencia. Meaning, I won’t be on Orencia until maybe September…if all goes well! It is frustrating…it seems as if to get one medicine you have to go through so many doors..at the same time…you wonder what else can you do? Learning experience for sure…I sure hope that the Isonaizid and Rifapentine combo…on top of my current RA/Lupus meds/Fibro Meds/Accutane…wont make like as miserable as I was told it would be! 😦 Never fun to hear your dr say to plan on staying home in bed….and enduring your 12 weeks of torture (Yay…soooooo encouraging!)

Other than that I spent most of this evening resting, I have a double class tomorrow. I want to make sure I am rested! I am learning to not plan on doing much on Tuesday night. Not with having such a long day on Wednesday. And the same goes for Thursday. These two days of the week I spend time resting…which is fine because I do have all day Friday to work. Last Friday, I worked nearly 12 straight hours on a paper so that was awesome. Granted now that I’m starting this new combo meds on Friday…who knows I might not be able to get as much done as I expected.

The thing I have had to make peace with yet again….new meds…new problems to handle….things might have to slow down. Will I finish on time…. I sure hope so but I learned (after my last pushing for a goal that landed me two weeks very sick in the hospital) that finishing is better than pushing to finish by a certain date. I have permission from both instructors to take I’s if I need them so at least I don’t have the stress. Does that mean I won’t work hard to finish, no I will! But I am learning (thanks to the last 4 years of living at dr’s offices) that sometimes there are bigger priorities. 

I am constantly reminded life can change in a moment! So I learned today…completely unexpected and I’m not thrilled in the least. But things happen for a reason! Just like that moment I found out I was sick and would have a life of drs/meds/drugs/pain..wasn’t the life I wanted but I am determined to make the best of it. And I haven’t been as slowed down as I thought I would have been….I’m almost a doctoral student graduate, I’ve been around the world more than once, I continue to use my gifts to serve, I encourage many through written word/blogs/social media, and I am determined despite the rough journey…that I will be happy and successful. 

I will take you with me on this LTBI cocktail of two plus Vit B6 journey! It was a journey I prayed I would never have to go on but I know many have done it before me. I know friends who prior to their first biologic had to wait 6 months to a year on treatment….I’m thankful I only have to wait 12 weeks. Granted I might wish for the 6 months/1 year after I take my first weekly dose! 

I do not regret living abroad! I do not regret my homeland, and I am thankful for all I have learned traveling and living abroad. If nothing else, I pray this journey strengthens me and gives me insight I can pass on to the next person I see. 

Since I only got two hours of sleep last night….I’m off to rest/sleep! 

Updates

Sooo I am finally getting to update! I blame the lag in both my feeling really rotten and just little energy these past few weeks. I have been thrown into the wonderful world and getting biologic approval. I am still waiting on my pre-determination form but about a week ago I ran into another problem. For those who don’t know, I was born and raised in a third world country, a country where there were many different diseases and risks than here in the United States. Part of being born abroad, I was given to BCG, essentially the TB vaccination.  As those of you who are on biologic medicine know…you have to take a TB skin test prior to getting on the medication. I was worried about this skin test because I was always was told I would get a positive reaction.  And I was not disappointed! I had a positive skin test reaction!! UGH!! 

The good thing, my rheumy expected this to happen and thus had me take get the TB Gold test. A blood test to determine if there is active TB in my system…that was fortunately negative. I thought I was done with that part of the getting ready for Orencia…but no!! I was called about a week ago…..my rheumy preffered that I get cleared by an infectious disease physican prior to getting Orencia! At first I was extremely annoyed because my PCP has a standing practice that in order to get a referral….I must go in the office. If I had known that I would need the referral I would have been prepared (this annoyance goes back to my being prepared for it) and it wouldn’t have been an issue. I made my first call to my doctor’s office and got the usual talk about coming into the office to get the referral and the best part…my PCP wouldn’t have an opening until July 19th! I was so frustrated! I could not believe my Orencia could potentially be backed up a month or more! 

Praise the Lord! He answered my prayers and my PCP relented…because I had just seen her (my PCP) I did not have to go in the office. My referral was placed and received within a few days. As soon as I knew my referral had been placed, I immediately called the infectious disease doctor (only one for 30 miles on my insurance) and prayed that I would not be waiting MONTHS for an appointment. Great news…there was ONE appointment available within the next few months (no doubt a cancellation) and it is tomorrow morning 8a.m.!! As frustrating as the preparation for Orencia has been, I am happy that at least this last part (hopefully last part) has worked out. I plan on begging and pleading (I will if I have to) for the infectious disease doctor to do what he needs to do and quickly get my clearance sent over to the rheumy office. (crossing fingers)

Other than that lovely journey I have been spending time writing! Good news is that I have a draft of my Chapter 1 done and out of my dissertation commitee. I am working on chapter 2! YAY!! 🙂 Slowly but surely making progress! Step by step, page by page! 🙂 That is my new motto! 

I have class this week, a double class for Program Evaluation. Then no class next week!! Also, great news to share…I did pass my comprehensive examinations! I got word last week!! YAY! The torture was worth it,, I am done and NEVER again 🙂 Well maybe again….but at least not for awhile. 🙂

back to the writing!

Orencia approved…but still waiting!!

I heard from the Orencia company this week!! They have approved me and insurance has as well!! YAY!! I am however still waiting on the pre-determination form to be approved and this might take up to 21 days (at least that is what my doctor’s office said!). I really hope it is not that long but at least I know some better meds are on the way!! 🙂 

I went to class on Wednesday night…insane how this is my last summer of coursework! I cannot wait though. However, I have so much to do…lots of reading and writing. I am working on getting a few pages of my dissertation introduction topic done this weekend. I hope to submit those pages to my proposal professor by Monday. My goal is to get at least two pages over to him every 3 days….that is one page a day..and one page of editing…at least that is my goal! I want to get done and honestly, I’m not sure how sick the infusions will make me as I will remain on Imuran for the next several months! 

The good news is I am working on weaning myself off the Lyrica…the side effects have become too much and to be honest…I really hope that Orencia helps enough for me to start feeling MUCH better. This last year has been ROUGH! 😦 and I am ready for some relief to happen soon. 

Off to type a bit more! Stay strong everyone! 

Still Waiting :(

Still waiting on the Orencia approval!! Darn!! I had hoped to know more last week but maybe this week will be the week. I’ve spent the weekend studying and getting ready for my first summer class on Wednesday. I am ahead in my reading, which feels nice. I know I will be busy so I felt it was important to get as ahead as possible. Thankfully, we will not meet every class period!!! I will be doing a lot of work on my own (whew about time!). 

Stay tuned to see how this orencia journey goes!