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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

  
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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.

  
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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.

emoticonDianne

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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.

  


Direction - Finally

Thursday, May 19, 2011

What is known: I have progressive severe inflammatory tenosynovitis.
Causes: Unknown, but have ruled out parasite, bacterial. I do have a IgM positive to Coxsackie B Types 3 and 4 - probably has made things worst, but not causal. At this point in time the grand sweep of "AutoImmune" is being give (could cover sarcoidosis, severe rheumatoid arthristis, seronegative spondylosis, eosinophilic fascitis....), still possible but less likely a viral reaction or even a lymphoma sort of process.
Problem: has spread to my whole body and in words of doc today "worst inflammation" she has ever seen. She had deep concerns I'm doing permanent damage to my body,
Direction: Tomorrow morning I'm starting on infusion high dose prednisone-like meds followed by methotrexate a chem agent.
Result: It will turn off my immune system - so I need to eat only cooked food, stay away from other people etc. It will cause GI normal chemo reaction and I may lose hair. However there is a huge equation of hope here.

I may not be happy about going through two weeks of hell, but sometimes you must jump on the maverick to tame him. I'm jumping on and this will be mastered. I've always been best in my "doing mode". I finally have a direction.

Tomorrow is day one of fourteen. Whatever the evil spirit is that has come to live in my temple is going to get a solid Spring cleaning.

Didn't we all wonder how long this could drag on? Not much longer! Healing or bust! This cowboy is going to come riding into the western front on the grandest stallion yet.

  
  Member Comments About This Blog Post:

PAG2809 5/20/2011 10:37AM

    Argh! I agree - hate the sound of the treatment, but getting you better is the goal and if this is what it takes... emoticon

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SAL1512 5/19/2011 9:50AM

    You have many people with you as you start this new journey of treatment!
Take care of yourself!
emoticon

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