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On board

Monday, May 23, 2011

Yesterday was another flare day. Had a yuck feeling to my body all day and got more tendon swelling. Also had waves of fever. I would tear off my clothes and that didn't even feel like enough - I wanted to rip off my skin. Then an hour later I'd be chilled. My face has broken out also, so that I look like I'm back being a teen. Not sure if that is because of the prednisone or a side symptom of inflammation in my body.

We still don't know what we are fighting. For the purposes of paperwork it is getting labeled severe serum negative rheumatoid arthritis. Just for the record, I don't think it is. Yet this protocol of high dose prednisone and the methotrexate will hit in the region of many things that it had been narrowed down here starts the first day of methotrexate.

I got up a six and took thyroid meds, rested for awhile then took one pill of the methotrexate with some yogurt. I waited an hour -- everything seemed find so I just got through taking the other two.

So far, I actually felt sicker yesterday than today. My only problem is that I've mixed myself up taking so much that I'm not sure how many prednisones I took. I know I took one... I'm pretty sure I need to take two more. Lesson for me to lay them out, so this doesn't happen in the future. Twelve pills in a morning is a record for me and I can tell I've just never had to test my brain buffer on this.

On of the keys to doing well with this is drinking a lot of three glasses of water are also on board.

Crossing my fingers that this is all worth it. I'm looking forward to physical therapy at 10am. My doctor is adding feet and ankles - besides working with the arms. My ankles are always to stiff in the morning that it will be wonderful to have some attention their direction.

I also got up and curled my hair. Most likely I won't lose all my hair - "thinning" is the wording that is thrown out as a minor side effect, but I figure while I've got my locks looking like they do now I should make something of them. My husband talked to me about the hair thing last night, and somehow getting back to work is so much more important to me than the status of my hair that I feel complete OK with whatever happens.

My hubby also got me a stuffed dog that you place in the microwave that gives off a gentle heat - so comforting and real relief for my hands. I'm back to take a quick nap before the rest of the day. I will do an end of day summary later.

8pm update. Other than a few flutters in my gut - I did not spend the day being sick. I am rejoicing at the end of the day - for what should have been a terrible day, not only on balance did I do well, but I also am seeing improvement. I believe the high dos prednisone has taken down the swelling in my arms and ankles. Today PT expanded my care to ankles and feet. I was really surprised that when they measured my range of motion that the right foot was significantly less than the rest. May be there is a reason that the walking stick is so helpful!

Also it is significantly easier to type again.

Thanks for all the prayers and well wishes, the investment paid off today. Got to love a God that listens to your friends ;-)

  Member Comments About This Blog Post:

SAL1512 5/24/2011 9:36PM

    I rejoice that typing is so much easier for you now that the meds appear to be working!

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PAG2809 5/24/2011 12:39PM

    So glad that you had a good day and really appreciated your call! emoticon

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Starting early

Sunday, May 22, 2011

3 hours of sleep - head hurting. Swelling is all back in my arms and I just wish I could fall back asleep -- taking my thyroid meds and will force myself to meditate. It could be a long day. 6am

  Member Comments About This Blog Post:

SAL1512 5/22/2011 9:50PM

    Go to a happy place. Review good memories. I hope your day goes better than you think! emoticon

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Doing what I should

Saturday, May 21, 2011

I didn't sleep very well last night. For how tired I was you'd think it would have been easy, but prednisone is known for getting in the way of sleep. So maybe 5 hours.

So of course when I get up all I want to do it lay in bed. However, I took my thyroid med (stuff without food), read for an hour, then got up and got some yogurt and whole grain bread and took prednisone. Good start I thought to myself. So why not continue it with a walking around the block. So I took my new walking stick, and Lou dog and hubby came along. About half way in my lower pelvis really hurt and I felt like crying, but I just slowed down and pushed on. I was out for a little over an hour - but counting it just as an hour due to my slow pace. I did it!

Got a call from one of my choir members who then dropped by for a visit. Such a blessing today to just be able to say come right on over since the house is in order -- AND I'd already gotten a shower for the day.

Now I'm exhaused and I'm going to lay down. A two hour nap sounds like the best...I'm logging and eat right, and even exercising. Doing my part.

P.S. Got a summons in the mail today for being a witness on a case...just when I'm calming down drama tries to come my direction.

The best way to lay down....

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PAG2809 5/21/2011 7:45PM

    Sounds like a good day, Katherine!

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Day 2 of !42!

Friday, May 20, 2011

How did a hear wrong. My doctor called me personally this morning and it is 6 weeks. I'm having a follow up appointment in 14 days.

Very different today. Woke up to having pressure in my head. Buzzing feeling in under my skin - too many racing thoughts to the point the it is like twelve radios playing with the phone ringing, someone trying to tell you something and your are trying to write a grocery list. No throwing up but stomach and gut feels off. I got 1000 mg of prednisone yesterday and obviously it is hitting me today.

My work called and they are dropping by after work. Twin thoughts - So good to see them! Yikes the toilets haven't been cleaned in weeks. I've been getting up and cleaning for 10 mns then laying down sweat and feeling like I;m going to lose it. Kitchen and bathrooms done next my bedroom. Day is racing by and all I really want to do is sleep.

My father is under my care for this weekend because my mom s over stressed and taking off....are people listening? She called me because she was overwhelmed I had to hang up because I startd to feel sick. Within 5 mins she is calling back and the whole room is spinning on me - I just left the phone.

42 days of this *ucking nightmare? I can wait until the visit is over so I can cry.

Ok my positive statement: Got to a point of spirital understanding today the all prayer asking for things is worthless. If God is all knowing and has the perfect plan for me then - just praise for his plan and the will to accept it. His will be done.

8pm note - The house is all clean and smells wonderful - even the toilets are sparkling! The visit from co-workers went well. Instead of a whole crowd - only two and they respected no hugs and were very considerate. And yes I truly enjoyed seeing them. They brought me some high quality veggie pizza for dinner - perfect. Also a lovely plant and a butterfly balloon. After they left my husband brought me two hot water bottles that are resting on my back and neck. So wonderful. It was a trying day, yet in the end has turned out well. I will make this. Thanks for the support - especially from my bestest friend that took two panicky phone calls from me and brought me back down to earth on the reality of the situation.

Another good eating/exercise/water day also.

  Member Comments About This Blog Post:

TWINKS55 5/21/2011 3:05PM

    emoticonYou write honestly and feel better for it, I think.
Katherine - you are awesome. You have been through so much and continue to find your path through this life.
Prayers are with you,
I send my love.


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LILLY_F 5/20/2011 6:46PM

  With all you are going through, you should NOT feel obligated to be your father's caretaker!

You might want to check and see if there's a elder care agency that can help when your mother needs to take a break.

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Protocol started

Thursday, May 19, 2011

First infusion today. Everything went well. I got a walk in and ate to my goal. Going to bed early brfore the slight head yuck turns to more.


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