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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.

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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Why write when a picture tells all

Sunday, May 15, 2011

My body is a monster and not the cute type off of Monsters Inc. Saturday was a high point of pain. Back to living with claw hands, and this morning I awoke to welts along my tendons literally growing before my eyes. It felt like a branding iron as the sheaths got to max full. Called dr on call as I considered going to the ER over pain. I took some benadryl. They are all still here this afternoon, just not as red and full. The dr started me back up on methyiprednisolone. (6 of 4 mg with daily taper). I'd just gotten back to my pre prednisone weigh. This is not just forearms, but knees, neck, ankles too -- did I mention ouch?



Only one welt shows up well here but there are four -- one at the base of the hand (8), the large one, one at about 4 on the ruler mid arm and one at 3.5. These are not surface level, they are bulging out from the under lying tendons.

PS I actually got on my Nustep today - there get to be a point where one pain actually help the mind to forget the other.

  
  Member Comments About This Blog Post:

SAL1512 5/17/2011 12:42AM

    Oh dear! I have never seen such a thing before!!!
emoticon

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PAG2809 5/16/2011 11:39AM

    emoticon

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So slipping off the horse

Monday, May 09, 2011

Tomorrow is my last day of prednisone and boy do I know it. The weekend was good enough that I just lived - I also took a providgil to be able to survive the family Mother's Day gathering at my daughters house. It gave me great energy.

Thank you daughter for the amazing dinner - it tastes so good when someone else has done all the work. She did an amazing salmon with dill and orange. So proud of her. If I could only believe that my suffering means that my DNA skipped her on whatever this is that I'm dealing with...

What am I going to do with my life? It takes all my energy to get going in the morning for maybe 3 hours of living and then I either am so in pain or falling asleep that I need a nap. By the time I get going again - the whole day is done. This is a sick roller coaster I'm on.
There are times I wish I could just know I had cancer, at least I could chase after a time line of chemo and have a direction.

Once again I'm SO mad at my doctors -- latest labs results were in last Wednesday. I have calls into my primary and the infectious disease doc and neither will fax the labs to me without calling me first...I called both for follow up Friday and today and still no call. Who is watching my back? I can feel the energy level draining out of me today...and I'm not going to have the drive to keep dogging them.

The lymph nodes under my arms are swelling again. I've been running 99.8 on my temp all day - feel like I'm getting the flu. About 90% of the day was in bed because I took a pain med - I literally can see the swelling climbing up my arms and ankles.

I want to go to Mayo clinic. This shit has got to stop. I will not live this way for even a year more - I just won't have it. Anyone know the writers from "House" I could give them some new material.

  
  Member Comments About This Blog Post:

BARBGEO 5/12/2011 7:45PM

    Oh Katherine,
I wish I didn't know how you feel. Sending you good thoughts... barb

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SAL1512 5/10/2011 11:18PM

    Not getting test results is like a form of torture. While our youngest son was ill, I lost so much energy waiting for more facts to work on making him more comfortable. So sorry you are going thru this . . . emoticon

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ARIANERA 5/10/2011 8:45AM

    Glad you enjoyed your Mother's Day.

I hope you can find more supportive doctors soon.

Ari

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PAG2809 5/10/2011 7:17AM

    Katherine, I'm so sorry that you're going through this, but not sorry that you're getting mad - the first person who has to be fighting for you is you, so give 'em hell!

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