Emotional Stress - I am having a hard time dealing with this!

Replies to This Discussion

Permalink Reply by Selina :) on December 3, 2011 at 10:09pm

Please know that your first flare is always the worst.  You are dealing with a whole new energy level and ultimately understanding yourself all over again.  I'm sure you went through a stage like this with fibromyalgia.  Please know that the meds, while they can be a beast in and of themselves, they WILL work.  You WILL feel better.  Believe that. It does take time.  It brings a whole new meaning to patience. . . . but it will pass.  You will regain strength and mobility.  Gotta keep positive though.  Letting this overwhelm you is not going to help.  I felt like that at the beginning and it was a very dark place.  I had to focus on all of the positive around me even when I didn't see it really.  This will get better :)

I'm here if you need me.  smonrreal@gmail.com

• ▶ Reply

Permalink Reply by Denise Hribar on December 3, 2011 at 10:45pm

Thanks Selina.   I found out this week that the joint where the clavicle meets the sternum(sternoclavicular joint) is infected.  One of the bones is also infected.  I have been so very tired.  I will have another MRI in about two weeks to see if there any changes in the bone and joint.  I have a dr appt on Dec 22 to get the results of the MRI.  I met with the surgeon this week.  If there is fluid he will remove it and culture it.  Depending on those results he may remove the joint.  Not looking forward to that.  But at least I know what could happen.  It would be hard on me id they all or the sudden said, we have to do surgery tomorrow.

On the other hand I do have some good news!  My muscles are calming down.  I am off the morphine.  I am on oxycontin and lidocaine patches.   I am off of work until mid January, that is unless I have surgery, then it will be longer.  Driving can still be a challenge as well as getting dressed.  I have given up vacuuming!  I have slowed down but only to a slower speed, not a complete stop.  I rest when ever I feel the need and take naps when I need to.  I am definitely not feeling young, like I used to.  

Thanks again.

• ▶ Reply

Permalink Reply by Selina :) on December 4, 2011 at 12:14am

So funny you mentioned vacuuming.  It was something that bothered me at the beginning too. . . I used to try but pushing and pulling the vacuum was just too difficult. . . I gave up too.  I realized it didn't matter.  

So glad to hear that at least you have a treatment plan.  It's nice when the doctors know what is going on and are ready to fix it.  It sucks when they're clueless.  So, I'm glad they are helping you.

Also nice to hear your muscles are calming down.  Things will improve slowly, but they do get better.  At this point, it's just appreciating pain free minutes, hours, days. . . soon they will be weeks, months. . . We will get through this :) 

Keep me posted!

Selina

• ▶ Reply

Permalink Reply by Denise Hribar on December 4, 2011 at 1:00am

Yes, Selina - We WILL get through it.  It may take a while but once I have my mind made up, I am pretty determined!  I just need to work on being patient.

• ▶ Reply

Permalink Reply by Lorelei Cohen on January 14, 2012 at 2:55pm

Life does get much better as you learn to live within the guidelines that your illness sets out for you. Getting onto a good medication therapy program that works for you will help you to feel better. Also researching and knowing as much as you can about your specific form of myositis helps.

I have been ill with jo1 antibodies for 27 years, and although my illness is chronic, I have learned to exist within it.

These pages may help you.

http://www.helium.com/items/1319209-adjust-to-chronic-illness-chron...

http://www.squidoo.com/tips-for-living-with-myositis-jo-1-antibodie...

Knowing your illness helps you to fight it.

I hope you will feel more comfortable within your illness soon.

Lorelei

• ▶ Reply

Permalink Reply by Meleah on January 16, 2012 at 8:03pm

I am a teacher as well and my first flare kept me out of work for two years.  But I am happy to say i am back teaching and I made it through the first semester.  Although it wasn't easy, I made it!  You also are entitled to accommodations at your place of work.  I know typing was hard for me when my arms and hands got really bad.   I hope you get help in the classroom from a classroom aide or parent volunteers.  Hope you are feeling better.

• ▶ Reply

Permalink Reply by Denise Hribar on February 14, 2012 at 12:45pm

I go back to work on March 1.  I have anemia from chronic inflammation.  Because of the recent infections, I am only on pain meds.  I am currently in water therapy, which helps, but sometimes I hurt like no other.  I am afraid of going back to work and the demands.  I am good for a few days and then I crash.  I have been more than exhausted.  I sleep 9 to 10 hours a night and sometimes take a nap when I over do it.  I am trying to get the endurance back to be able to work.  I have been trying to stay busy but it is hard.   I have a physical a week after I go back to work.  I should be completely exhausted then.  It will be interesting to see what happens then.  I just can't go on with this fatigue

• ▶ Reply

Permalink Reply by Nichole Smith on April 8, 2012 at 1:33pm

I hate that there are people feeling the same things (and much more) than I am feeling, but it sure feels better not to be alone.  I was diagnosed this month and before I was, it hit me hard.  I was 6 months into a tough Radiography program at the local college and doing clinicals at a local hospital two days a week all day.  I waited for 2 and a half years to get into this program so when I had to quit it was very emotional for me. 

So now I'm on Prednisone waiting for it to work.  I hope you guys don't mind me tagging along on your ride :)

• ▶ Reply

Permalink Reply by Denise Hribar on April 8, 2012 at 3:19pm

Nicole - I am GLAD you are tagging along.  My sed rate had been in the high 90's and then it went down to the low 40's.  A week after going back to work it was up to 67. I am exhausted but it is slowly getting better.  I can't take prednisone because of prior damage to my adrenal glands from being on prednisone for the RA.  I am waiting to hear from my rheumy about starting on methotrexate. She wants ok from the infectious disease doctor.  I don't want o be on it again but I need something.  If we stick together we will be ok.

• ▶ Reply

Permalink Reply by Meleah on April 8, 2012 at 3:52pm

Denise how is the classroom going?  As a fellow teacher I sympathize with you.  I hope you have some amazing parent volunteers.  Thanks for keeping us posted on how you are doing.  I hope your SED rate goes back down again.

 

• ▶ Reply

Permalink Reply by Nichole Smith on April 8, 2012 at 7:02pm

Denise,

I hope the methotrexate helps you, I've heard good things about it.  I'm with you, stick together, because I'll tell you, nobody else seems to know exactly what it's like unless their in it!

Denise Hribar said:

Nicole - I am GLAD you are tagging along.  My sed rate had been in the high 90's and then it went down to the low 40's.  A week after going back to work it was up to 67. I am exhausted but it is slowly getting better.  I can't take prednisone because of prior damage to my adrenal glands from being on prednisone for the RA.  I am waiting to hear from my rheumy about starting on methotrexate. She wants ok from the infectious disease doctor.  I don't want o be on it again but I need something.  If we stick together we will be ok.

• ▶ Reply

Permalink Reply by Nichole Smith on April 28, 2012 at 5:10pm

I went to the rheum yesterday and he is ordering a pneumonia vaccine then two weeks from that I will start methotrexate.

My CK went from 11,000's down to 4400 so if the methotrexate helps I'm hoping they can taper the prednisone down soon.

Well you're in my thoughts, I hope whatever they do works for you!

• ▶ Reply

▶ Reply to Discussion