Liver, Methotrexate and listening to my own advice

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. James 1:2-4

I have been trying my best to accept things that happen as God's will. To be ok and to KNOW that God has a plan. It is not my place to ask questions. I am just supposed to lean on Him.
OK God....I am leaning. Help me to not doubt. To not question. To not wonder. To give it all up to you. Help me please. Amen.

Friday I went to see my Rheumatologist. If you have followed me for awhile you will remember last spring when I came off the Enbrel for a few months so I could start on the Methotrexate. This was my Rheumys idea. He thought my PCP jumped into the Enbrel too soon. I did it. I had several BAD months. It took nearly 6 months of building up the Methotrexate in my system along with SEVERAL dosage increases to get where I was starting to feel better. To notice a difference. It didn't "fix" me, but it helped. And believe me.....any help is a good thing. When I saw him on friday he told me that the Methotrexate is hurting my liver. And he told me to SKIP my next dose.....have bloodwork next weekend and then resume on the Methotrexate at HALF doses.

Really? REALLY? I know I can't risk damaging my liver. But I also know that a lower dosage doesn't help me. Maybe on the inside it does....maybe it helps stop my disease from affecting my internal organs. Maybe is stops it from progressing. But it DOESN'T help me FEEL better. It doesn't help me get out of bed in the morning. It doesn't help me to get through my day or take care of my kids.

So here I am.....freaked out that the next month or two (or more!) will be bad. Hubby told me that maybe this will work out so that I can go back on the Enbrel (which helped). He also said that maybe this is God's will and it will work out for a few other things going on in our lives. Yes....my hubby said that. Hearing him think like that warmed my heart....and helped me to get through a very dark and sad friday afternoon.

I have to trust in the doctor....because I don't want liver damage. I WILL make it through no matter how rough the next month or so will be. I have great people in my life who will help me. And I have God. and God has me.

Doctors visit update

I went to my Rheumatologist today. I spent about 5 minutes praying in the van before I went in, I prayed for strength to say what needed to be said and for God to make Dr. W actually listen to me. Guess what?! God is Good! I went in and it was WAY less stressful than the last few visits. We chit-chatted about kids, Halloween, dogs, children's TV shows.....oh...and me. He said he can tell I'm hurting. My blood work shows it too, apparently my numbers are up that show inflammation. So we talked about some options and decided on the following changes. My methotrexate is being increased. I told him that I feel better on it than I do when I am off of it, but I still don't feel good. He agreed. And he is still hopeful that it WILL do great things for me. Next, we discussed Savella, which is the new Fibromyalgia drug. I seriously can't tell that I am even on it.....so I am coming off of it and going to try Cymbalta next. A few more things were discussed and changed (can't throw all my dirty laundry out here) and then I got a cortisone shot in both hips. YAY. No, I am not a glutton for punishment and NO I don't like needles. But these shots help the pain in my hips A LOT. Totally worth the big, giant needles that they use. (Sorry Amy, that was for you! LOL)

So that's my good news for today. I go back in 3 months. Lets hope the increase in meds and the change in other meds will help.

I have to say Thank you to God......he answered some serious prayers for me today.

OK, I'm off to watch Glenn Beck on my DVR. I highly recommend everyone else do the same. Because some VERY scary stuff is going on in our Country and we all need to know about it.

Goodnight!

Friends and Illness

Something happened recently that reaffirms my reasons for not discussing my health issues with friends. Yes, I do have a few that know what is going on in my life, but for the most part people who read my blog know more about ME than my friends. And this is why....

Someone (another fibro patient) left a comment to me on Facebook offering me "Spoons". Spoons refer to the "Spoon Theory" which gives an awesome description about how people with chronic illnesses have to ration their energy supplies. It is long but worth reading if you know anyone who is sick. OK, back to my point. So one of my oldest and dearest friends (who I have not been open and honest with about my diseases) asked what "spoons" meant and I gave a brief answer and then sent an email to her. I thought maybe this would be a great time to open up to here and explain my situation. I told her in the email what I have and how I am, and sent her a link to the Spoon Theory.

This was nearly a week ago and I have yet to hear back from her. Illness makes people uncomfortable. It freaks them out. I know this, and I am not Mad at her, but a little disappointed. Any response would have been better than none. So I will go back to pretending I am fine and not sharing much about how sick I really am (at least with the real world). Because I have enough going on and don't want to lose friends because I made them uncomfortable with the truth.

If anyone asks.....I am fine. Just fine.

Things you need to know....

I have posted in the past about my illnesses but I wanted to do it again to help bring attention to National Invisible Chronic Illness Awareness Week. So here is a list of questions off the NICIAW website......

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are: Sjogrens and Fibromyalgia

2. I was diagnosed with it in the year: 2006

3. But I had symptoms since: 2006....I was one of the lucky ones who didn't spend 5 or more years without a true diagnosis. My neurologist knew right away that I had Fibromyalgia and my PCP found the Sjogrens pretty quick too.

4. The biggest adjustment I’ve had to make is: Adjusting to the limitations my body has, and how to continue to get through the day while I am in pain. It is hard when you know that you have a lot of stuff that needs to be done and your body will only cooperate to do a few of those things.

5. Most people assume: I am just lazy.

6. The hardest part about mornings are: Moving. Seriously, between feeling like I haven't slept, stiffness and pain... just getting up and moving is HARD.

7. My favorite medical TV show is: I like all the blood and guts ER shows.

8. A gadget I couldn’t live without is: Cordless telephone. If I didn't have one I would miss most calls because most days I can't move that fast.

9. The hardest part about nights are: Nights always seem to be worse for me. I think it is because I push through so much during the day and when I finally stop to rest all that pain comes flooding at me.

10. Each day I take __ pills. (No comments, please) 13 pills (more than that if you count pain killers). Except on Saturdays when I take 20 (methotrexate is only taken one day a week).

11. Regarding alternative treatments I: Haven't tried any, I guess I don't know too much about them.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. I hate my disease and how it limits me but I am also ashamed of it and I am glad most people have no idea what I am going through.

13. Regarding working and career: I used to have one, but not right now. There is no way I could function all day at a job. They would fire me for falling asleep at my desk or for taking too many days off.

14. People would be surprised to know: That things that seem small to them are huge to me. Like taking a shower, that drains my energy. So planning anything after a shower is not an option. I need to rest afterwards. The same goes for household chores. I can't do the dishes and turn around and run the sweeper. Nope...it just can't happen that way. AND another thing that might surprise people is That even some of my closest friends have no idea how sick I really am. I am just too ashamed to let them know.

15. The hardest thing to accept about my new reality has been: that this is PERMANENT. Forever is a long, long time to feel crappy and hurt like Hell.

16. Something I never thought I couldn't do with my illness that I did was: This is hard. I can't think of anything I have done that my diseases would have prevented. I guess I better get out there and start trying new stuff, right?

17. The commercials about my illness: Fibro has commercials and I hate them. It seems like it is the "new" thing to have.....which makes me think people assume I jumped on the commercial bandwagon. But I had it before those commercials came out. And Sjogrens doesn't have any commercials. But I would love to see one....and see if anyone pronounced it correctly.

18. Something I really miss doing since I was diagnosed is: Riding my bicycle. I finally got the bike I always wanted and then got sick. That depresses me.

19. It was really hard to have to give up: My independence. Well, it isn't completely gone but on bad days I need lots of help.

20. A new hobby I have taken up since my diagnosis is: Blogging!

21. If I could have one day of feeling normal again I would: Play and Run with my boys. I would do everything they asked and enjoy every second of having an able body to do it with.

22. My illness has taught me: To slow down. And that being with family and friends is what is important.

23. Want to know a secret? One thing people say that gets under my skin is: Are you really THAT bad??

24. But I love it when people: Accept me as I am, Sickness and all.

25. My favorite motto, scripture, quote that gets me through tough times is: But I will restore you to health and heal your wounds, declares the LORD. Jeremiah 30:17

26. When someone is diagnosed I’d like to tell them: Tell your doctor how your feeling, TRUTHFULLY. If your hurting, tell them. If you are tired, tell them . And if they wont listen, get new doctors.

27. Something that has surprised me about living with an illness is: How people judge you so harshly and don't believe you since you look ok. It is very frustrating. But I guess I can't complain too much since I spend most of my time hiding my illnesses. BUT those times when people have found out and dismisses it as nothing really upset me.

28. The nicest thing someone did for me when I wasn’t feeling well was: Say it was OK to cancel or change plans at the last minute. (thanks Amy! You are the BEST!!)

29. I’m involved with Invisible Illness Week because: I think more people need to know that just because someone looks OK on the outside, they may be suffering on the inside. Don't judge!

30. The fact that you read this list makes me feel: Thankful. I hope that it helps to change the way you see other people.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

Couch Potato it is!

OK, I give......I am done trying to "help" around here. I'm going to listen to the doctors, nurses and all the wonderful friends and family members and sit my butt down and leave it there. Wow. This is going to be hard but I know I need to do it. I think my biggest problem is that I deal with pain daily (Sjogrens and Fibro....yep!) and have to continually push through to get stuff done. So my mindset is kind of set that way. But pushing through the Sjoggie and Fibro pain wont cause me to need more surgery. So with that in mind I am retiring to the couch. Only to be moved in case of meals, potty breaks and bedtime. See where I am sitting? I will still be here in 6 weeks. I promise. Ok, I promise to try really hard.
Luckily I have several new books sitting here with me. The Shack, The Purpose Driven Life and my newest (review book...not available in stores until later in Sept) You Were Born for This. Oh! And I just got an email that Ted Dekker's Three is being shipped to me. Thank you Paperbackswap.com!

P.S. Thank you Jillene, I needed that "example" of what could happen.

Update...good news

I went to the doctor yesterday and left with a smile on my face. Well, sort of. To start with he is increasing my Methotrexate from 4 pills a week to 7 a week. Ugh. That's tough to be happy about, especially since my hair is falling out already. But he said after my blood test on Thursday he will know if I need a medicine to help stop the hair loss. He cleared me for surgery (two doctors down, one to go!)and when I asked to start on Cymbalta he suggested that I be put on Savella instead. YAY!!! Cymbalta is a drug for depression that is also used to treat Fibromyalgia but Savella is an actual Fibromyalgia drug. He said that all the info about it shows great results. So WOO HOO! FINALLY a medicine to treat the fibro. I have been waiting a long long time for this. So yes, I am thrilled and have my hopes up....and I will let you know how it goes :-)

Thanks again for all the prayers....they are helping and I appreciate them all.

Health Class 101

I decided to just bite the bullet. Write it and post it....no looking back. So here it is. A nice, neater version of my life. There is more details but you don't need to read them, not yet anyway. And I am only doing this because I believe this is cheaper than therapy. You are my therapist. My support system. You have my back, right? I can whine and complain and you will still love me, right? Gee, I hope so. We have a long couple months ahead.....

Remember in High School Health class when you learned about the Immune System? It's the part of your body that attacks outside stuff like germs, bacteria, etc. In most people it does a nice, quiet job and no one even notices it. But not me. I have an Auto-Immune Disease, which means my body attacks itself. I have Sjogrens, which is like Lupus's drier cousin. I say drier because it attacks your moisture producing glands first. In some (most?) people it stops there. Some people just have dry eyes or dry mouth. Not me. I hit the jackpot. Mine affects my entire body. And Sjogrens brought along its bald-headed step child Fibromyalgia to the party. Yay me! Ugh. So what does this mean for me. Pain, lots of pain and disabling fatigue. Think Mono....but WAY worse. In the 2 1/2 years since I got sick I now have slight eye damage, have lost 5 teeth (when your mouth is dry it decays your teeth at a very fast rate), arthritis in just about every joint, unbearable fatigue and pain. Muscle pain and joint pain. EVERYWHERE. I spend all day everyday in pain. It sucks.

Now....for my upcoming treatment changes. Currently I am on million and one different pills each day. ok, maybe not that many but close. I also take Enbrel shots twice a week. I started these back in September and they have helped. They have lifted a lot of my brain fog and eased the fatigue. I still have to nap everyday and pace myself but I can see a difference. Woo hoo...right? Wrong! My Rheumatologist is taking me off. My PCP jumped the gun when he put me on it and my Rhemy is NOT HAPPY. So next week I go to my PCP and stop the Enbrel. Then I have to wait nearly 2 months before my next appointment. Where I will be starting Methotrexate. Which is a cancer drug. And it scares me. I am hopeful that it might help. But I am still scared. Scared that it wont help. Scared that it will, but I will also loose my hair. And I am totally petrified of my nearly 2 months without Enbrel before I start the Methotrexate. Before Enbrel I could barely function. So what happens after I come off?

One more issue to throw in this mix. I have the big E. Which is mostly controlled. Mostly. But when I started Enbrel it threw my body for a loop....and I had 3 seizures. So now what? Will I have more when I come off? Will the Methotrexate cause any? So many questions.