Medication limbo... | Arthritis Information

 

First off, thanks so much for your support during the jaw saga.  It is never ending at this point so your kind words help so much.  The second surgery is schedule for June 14, my first day of summer vacation.  It can't come fast enough.  I am honestly not sure how I'll make it through the rest of the school year, but I have too.  As I have said, the kids have been great.  They honestly help me get through the day.  Their energy is contagious.

 

Ok..now to the purpose of this post.  I am kinda stuck in limbo as far as meds go.  And, I can most definitely feel it.  My last dose of Rituxan was Dec. 9th.  That puts the next dose at/near June.  There is some wiggle room as far as timing.  The RD and I both feel that the Rituxan is not working.  I have been on is for a year and a half. In that year I have been diagnosed with Lung Disease, had pericarditis, multiple eye issues, and of course-joint issues as well.  But, what if this is as good as it gets?  Maybe the Rituxan is working..the RA is just winning. 

 

So, RD does not want to continue this med.  Even if he did, he says no infusion until July or probably August.  He does not want me to have it now since I have not healed from the first surgery and the second one is approaching.  He wants me to try Actemra.  I am not a fan of this as it is a montly infusion.  I have to work a month to get a sick day at work.  I have NO days right now and if I take this med, I'll never have days.  Regardless, he won't start this med until August due to the surgery. 

 

Right now I feel awful.  I am not even including the jaw in this description.  I have several swollen joints.  I am waking up at 5:30am to take a hot bath before I have to get my son up.  I am exhausted...completely wiped out.  My chest is very tight and...well, I feel like dirt.  Not getting a new biologic until August scares me.  I'm flairing now...  I know that part of the flair is due to the surgery.  RD is also trying to decrase the steriods I am on.  As he puts it...a bilateral joint replacement is risky infection wise on its on without adding steriods to the mix.  But, I don't know how I am going to keep going if I don't get some of this inflammation down.  RD did inject my elbow since it is locked in the morning.  It helped a bit with the locking, but now with the inflammation.

 

So, Argh..  I am thinking that Actemra might be the answer, but I am not sure.  Maybe I should be back to one I have already taken?  I have taken them all...really.  I don't know.

 

Really, this is kind of a pointless post.  I am just frustrated with this whole med issue.  Rd and jaw surgeon both said it's a fine line.  They don't want my health declining due to me not taking meds(which it is), but they also don't want me immunocomprised.  Both are concerned about the heart/lung issues that tend to arise when my RA flairs. 

 

I quit

 

Lisa

 

You are going through such a rough patch.... patch? heck forest!!

 

and with the little ones.... it's very difficult... I feel for you.

 

But.... sometimes we have to take those backward movements in order to move forward.. you have to flare and be unmedicated tohave your jaw fixed so you can try something new?

 

It's so hard.. it's not good at all for any of us when this happens......

 

but this could be your turning point...... I have to hang onto that for you.

 

Hugs!

 

I realize that does not get you through the "wash out" and through the surgery.  But you have my sympathies - best wishes Rebecca for a rainbow at the end of all these dark clouds.

 

I'm sorry you feel so awful. I wish I knew something to say that would make you feel better. It's so important to keep posting here and talking to others that understand some of what you are going through.  You are one strong woman, and I hope you and your doctors find something that will help with the RA. Maybe since you have tried everything else it's worth a shot to try the Actemra? I know you are worried about not having time off from work, but, what if this medication does help?  If it doesnt, then atleast you know you've tried. You do seem to be stuck between things right now with your jaw issues/surgerys etc. Trying to take care of your son too, I'm sure it's not easy. I will keep you in my prayers , sending you a big hug!!! He mentioned that he didn't think Simponi or Cimzia would work based on the other meds I have received and results.  I want to ask him more about that at my appt. in May. Just took Friday off....sigh :(   At this rate I am going to have a yardsale to pay my mortgage!  Rebecca,
Sorry to hear you are going through such a time of it. Life just stinks once you  get stuck with this terrible disease. I know it's especially hard when you have to work and suffer through this RA. And you with a little one. You are definately in my  thoughts and prayers. 
Does your district  let teachers donate sick days when there is a need? At my district teachers are allowed to give sick days to to others who have an urgent need for them due to extreme health or illness issues. Just a thought.
Take care now and know that we are all sending positive thoughts and prayers your way.
Continued prayers and well wishes. RA is not an easy ride that is for sure. I have never been a big fan of roller coaster rides myself.

Nothing optimistic about this post…

Found out today that I will be transferred to the elementary level for next year.  We are facing stiff budget cuts in the county.  This is causing an increase in class size.  At my current school there are 18 sections of science.  Each teacher will teach 6 periods.  There are 4 of us…I am the newest in the building having transferred here 2 years ago.  I can teach down to the elementary level.  There is quite a bit of shuffling being done staffing wise.  For the first time, Central Office did the staffing.  Normally, principals have a say, but not this year.  Central did it so it couldn’t get personal.  My principal is just as upset as I am.  She made it clear that I am not a teacher that she wants to lose.  She also knows that this is not the summer for this to be happening.  I have the potential to start the school year late depending on how the surgery goes. Plus, It’s not like I have time to develop new lesson plans and activities---hello…bilateral joint replacement anyone???

My drs have always made it clear that the fact that I teach older kids has allowed me to teach for as long as I have.  On my bad days, that can be fairly independent.  Not so with the younger ones.  My principal made it clear that I need upper elementary.  4^th or 5^th grade I think I could handle.  I am worried that I couldn’t handle anything younger.   It is not clear yet what grade it would be-as soon as my principal knows, she will let me know.

My drs have told me that I am being medicated to teach.  This can’t continue.  We are already decreasing steroids…I have had two ankle fractures since August…not good.  Of course, decrease in steroids increases the possibility of the heart/lung involvement-not to mention the other joints.  I was encouraged to look into disability over Christmas during the latest crazy flair.  Luckily, things settled down.  Of course, the fact that I am getting a bilateral jaw joint replacement should be a hint that things need to settle.  I have looked up several disability lawyers in the area and will call tomorrow.  Most lawyers have a free consultation.  I have a ton of questions-who wouldn’t?  33 is just so young…And I love my job.  I see my pain dr. in 2 weeks and my RD in 3.  I’ll ask them to be blunt-what do they think?  I just don’t know how to survive on disability.  And I’ve heard you have to go 5 months without a paycheck…how are bills paid? 

There are just so many unknowns…What will be the outcome painwise from this surgery?  Will Actemra be the med I need?  I’m out of contacts indefinitely due to eye inflammation.  I have a CT scan and lung function test on the 6^th. Hopefully these will give us some more insight…

 

ARGH…I quit-again.  Seriously…who did I tick off in a past life????

Good grief, Rebecca... I'm stunned and at a loss for words!  Keep the appointment with the lawyer and maybe he can give you a better picture of things.  You are right; a disability check is not enough to live on, but there are other programs I am sure you will qualify for and you should check into these as well.  I hate to get personal, I know you have stated that Nathan's dad is not in the picture, does he do his part in helping monetarily?  I would think about pursuing that too, if he doesn't help out. 

These are all things that you have to look into now because the process can be so drawn out, but the rest - the school issues, your worries about Actemra, the surgery outcome - try, (I know this is the hard part) try to let all that go.  There are things you do have control over, and things you don't and the don't(s) you can't stress over.  Unless there is something you can do to change the outcome, let it go.  I'm not trying to be all Zen master on you, (and if you knew me, you'd know just how funny that image would be!) but stressing over the worries we have no control over are the ones that will make you sick.  If you've done all you can, recognize the worry, (sharing it helps me) then let it go. 

{{{Rebecca}}} blessings to you many times over and big hugs too.  Please keep us posted, we all care and your name is on so many minds and prayer list here; you are our sister.

Rebecca... this is bad timing to say the least... Hi Rebecca, have you found some breathing room?  How are you feeling?  I hope you are feeling a little better at least, and your pain is getting better. 

I think of you every day and send a hummmmm tossed in with some good vibes and a prayer!

I have not disappeared…

Still just very frustrated. 

Made it to work 2 days last week due to drs appointments and medical tests.  The lung CT scan came back pretty good-yea for anything good at this point.  The lung function tests showed a decrease in diffusion-basically how Oxygen and Carbon Dioxide move through the tissues.  It wasn’t a big decrease, but not what we were hoping for.  Dr. said it explains why I feel like I am hyperventilating and have ended up in the ER/admitted a few times this year.  Lung dr. wants to repeat the tests next year.  Sooner if something really gets worse.  She is passing the job to the RD since it is an RA issue at this point. 

Pain management dr. is really pressing the disability issue.  I went by our Human Resources dept. and picked up paperwork.  Still not sure what exactly I will do at this point.  I just have no idea how to survive financially.  According to HR I would be awarded between 70-00 a month.  But, health insurance for myself and my son would amount to 3 a month.  HUH???  My parents want to buy my house out from under me.  That would solve the mortgage payment problem, but still not livable. I am very blessed in the fact that my family can help out.  I just really don’t want them to buy my house.  I’m 33…way too old to be dependent on my family.  Also, this is just not a good time to leave a profession.  There is a hiring freeze and it is expected to continue for a number of years.  Taking 6 months off or a year isn’t really an option.  Either I take a position or I don’t.  I see the pain dr. again on the 7^th.  He’ll have looked over the paperwork by then and be able to answer any questions.  He did say that in his opinion, I shouldn’t have a problem.  Yes, I am young which doesn’t help, but I have a lot of documented “issues”.  This is one of those few situations where having bad test results is a good thing.

I see the RD on Monday.  He wants to talk about Actemra.  I guess that is probably the next one to try.  I’ve done them all…Enbrel, Humira, Remicade, Orencia, Rituxan…Bring it on.  I just wish I could start it now.  If it can give me some relief, the next school year might not even be an issue.  Of course, it takes months to get any relief-nothing is quick with this disease.

Jaw wise…things are slowly progressing. I look close to normal. Still have some speech issues occasionally-mainly at the end of the day.  Things are still on track for round two on June 14^th.  Not looking forward to it, but I want it done.

Really, I am just not in a good place right now.  I’m exhausted-been in bed by 8:30 the past two nights.  This is just getting me behind in my grading.  I’ve been getting up @5:30 to take a hot bath and loosen up.  Way too early!!!  I’m just kinda stuck-no real answers to my problems.  I just wish I could see into the future-what to do?  I come home every night and basically just have a good cry.  I asked my pain dr. if he thought I needed to be on an antidepressant, and he said no.  He did say that if I really felt that way, he had no problem prescribing one.  He just feels that I have some big decisions to make. 

{{{Rebecca}}} I'm really, really sorry you are going through all this!  The decisions you have to make are rough enough alone, but with the surgeries... Sheesh!

I can tell you from experience, I had well documented issues and it still was a three year process to disability.  Even if you decide tomorrow to go for it, it may still be awhile.  Can you take out short or long term disability through your insurance company?  You might have to work until your sign up period but it would be worth the extra $$ that the insurance would cost.  That might be an option, as well as signing up for Afflac.  My stepdad had Afflac when he was diagnosed with cancer and it payed really well.  He had only had it 1 month and it still payed. 

I don't know what situation your parents are in, but having them help with the mortgage would give you some breathing room, as well as some more options like less work hours for awhile.  I know you only need to get to the summer for now, but it may be an option for next fall.  Once you got back on your feet, you could work a deal to buy back your house or pay rent.  Either way, you could stay in your home and not go through the stress of moving.  I can tell you from a parents' perspective, they would do anything for you and you shouldn't feel guilty about taking advantage of their offer.  And, believe me, there will come a day you will be helping your parents out... maybe not financially, but you will be there for them when they need you. 

Take it slow, Rebecca, an hour at a time if you have to.  You do have big decisions you have to make, but not all at once or right now.  Let the wait and see stuff ride and just deal with what is exactly in front of you.  Use the old Scarlett O'Hara approach (Gone with the Wind) "I can't think about that right now.  If I do, I'll go crazy.  I'll think about that tomorrow."
And, good cry is good for letting go and putting things in perspective; sorts out the important from the not so.

I know it feels like you're losing right now, but I bet once you are through this school year and the next surgery, it'll look different.  You are one strong w I wish we could see into your future also. I have be hopes and dreams for you. If you make it without going on disability then that would be fine even wonderful. So...took yesterday off from school since I felt like dirt. My PT friend fit me in for a morning appt-bless her. I've been having a ton of chestwall pain as well as the jaw. She noted that things were super tight. I have been trying to hold out until Monday for when I see my RD. She losened me up a bit with ultrasound and e-stim. Hopefully I can hold out-I'm Tough!

The real fun began when I went to my eye appt. The RA has always done a number on my eyes-not quite sure why. My left eye began to be very painful about midweek so I saw the dr. yesterday. Turns out I have Keratitis-basically little holes in the cornea caused by, you guessed it-RA. I've had this before and it hurts. So, now I have an ointment which messes up my vision anyway, and drops. I see him again on Monday. Stop the madness!!! Little guy had a game this morning and is at a bday party. Then dinner at my parents. I really feel like dirt, and now I can't see...but my dad is going out of town for 3 weeks so I really just need to suck it up and go. Plus, the boys have so much fun when then get together. Then he'll come home and crash. I had that years ago. Very painful. I was blind from the meds. They had to dialate my pupils to help with the pain. I remember I looked at the calander and all I could see were empty boxes. That is I could not see any of the numbers on the calander. I just got to thinking you are on better pain meds then they gave me when I had this. I remember telling them that the pain meds may as well be water. They said pain meds do not work on the eyes so well and so they dialated my eyes into ablivian.
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