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Final Count down 60 days 荨麻疹性血管炎

Final Count down 60 days 041018
 

http://toughrose.pixnet.net/blog

Final Count down 60 days 041018

After long research and compare family disease history, most likely I have what dad had as Vasculitis.  If that is true, I only have 60 days to live compare how dad’s illness progress.  My upper right leg shown red rash since April 7th, till April 9th I believe all signs point to Vasculitis. (urticarial vasculitis) 荨麻疹性血管炎

I accept it as the final result, my dad must be felt lonely and he wants me to join him.  He passed away due to Vasculitis on December 2nd 2016.  The last email I received from him September 20, 2016 (Taiwan 105) at 1048am.  He explained how he got back from death door during emergency room visit.  He told me that over 70 years that this was the first time he ever suffered such unbearable pain.   Now, it is my turn.  He went back to the hospital in October and he went through all treatment plans. Finally he left as his spirit also had gone without any hope in him  The last phone conversation after he got back from the hospital we had and now it is also the last time I ever heard his voice.   I set my time clock for 60 days.

My first regret would be that I don’t have a chance to watch my son’s college graduation.  My second regret should be breaking my mom and my family two years promise to meeting them.   My third regret could be I will never fulfill my dream in this life time.  Last night beside pain from  my red rash and also added into muscle pain.  I knew my life is numerous.  Vasculitis could progress either slow or quick; I hope I have quick one.  So far that I only told my husband, but he seems not believe in.  Vasculitis is also genetic disease.  I shared my finding with a long time college friend.  I will have to let him mentor my son when I am gone.  Since March my financial crisis hit us, I did not know my health hit me twice hard.

I have been trying all methods to cool my rash  down from ice patch, egg white,  so much more.  As I have deiced that I will not undergo any medicine treatment, but I do still taking some medicine to make me feel less pain.  Taking 2 tables of Allergy medicine as Antihistamine to temporary relief my allergy symptoms since April 7th.  Adding Alphamox 250mg 1 table started April 10th because my muscle weakness.  In addition, I cooked heart juice that included ginger, garlic,  lemon juice and apple cider vinegar added honey so I take twice a day; one  is in the afternoon and the other is at night time. 

 

Count down to talking about my dying wish; 1. Help my husband to find a job 2. Find my sons’ mentors to help him when I am gone.  3. Write a good bye letter to my family and friends.  Sixty days very little time I have left with.  I don’t know how to say good bye. 

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Final Count down 59 days 041118

Today, I have added additional Vitamin B and take two tables of Allergy medicine, but I skip Alphamox.  But later I took 1 table of Trichozole treating for inflection and 1 table of APO-AMOXI 250 mg and As usual drinking heart juice, I also change coffee to green tea.   My sadness seems clam down a bit as I accept the fate of my future. 

Increasing my right leg weakness and feel painful by sitting and walking, it soon will limit my mobility.  It is getting hard for me to climb stairs.  After last night I barely can sleep at all, I have moved around to let my right leg feel comfortable.     

Feeling mixed with pain.

Final Countdown 58days 041218

After last night pain caused from rash, I got up several times.  This morning, I wake up as usual taking all that medication.  I still feel so much pain.  I now can understand why dad could not handle the pain and later he would give up fighting.  I decided to focus on hometherapy, I am ging to buy Aloe  vera gal and oatmeal and coconut oil to relief my rash pain.  Maybe adding some yoga to release my pain, so far I still can’t find anything to feel less pain.

Final Countdown 57days 041318

Last night again I barely can sleep at all, rash caused pain not just burning sensation but also muscle pain.  I got up few times to use cold water to compress it.  This morning waking up and get all medicine into my body.  Taste with coconut that even bring up burning feel, I rush to wash off with cold water.  So far only ices make me feel better.   Coughing so happened more frequently due to the temperature go high.    Medicine adding twice a day for APO-AMOXI 250 mg for pain.

Final countdown 53 days 041718

Recently I just shared my experiences about urticarial vasculitis 荨麻疹性血管炎 on my blog http://toughrose.pixnet.net/blog It has been 10 days and after all the itchy and pain at sleepless nights. I finally two days ago find a great way to deal with it. Beside all that intake medication. I also add aloe gel and watermelon ice (Chinese medicine). Finally I can sleep through the night the first time. I will share more information later. Now I also take photo each day to see if any improvement has been made. Please come to share with me about your experiences dealing with this no cure disease.

 

 

Final countdown 52 days 041818

Medical research---reach out to a researcher that I was working on with my dad’s disease

I want to start Vasculitis research by collecting real data in patient.  I hope I can get assistance from you.

 

Believe or not!  I have my dad's genetic disease as Vasculitis.  Mine is called urticarial vasculitis.  It is about 10 days now.  I can't believe it after my dad died from it and now I affected it.  These few days pollen were getting high.  I start having red spots on my upper right leg and left leg is fine.  Then, red spots increase and spread all over my upper right leg.  I couldn't sleep first few days and each day only compress with ice can relief my pain, itchy and burning feel.  Till two days ago, I apply aloe gel and watermelon ice and red spot became smaller.  I have been told that red spots will take at least 6 weeks and all the medicine I take can't cure it.  It only allowed support treatment and there is no cure.  I recently contact a net-pal that she had it about 5 years ago.  I am asking her if she ever find a way to deal with it.  In the beginning, when I knew that I have UV.  I was sad and angry.  Now I accept it since this will be with me till I die.  I finally understand how my dad had felt.  Anyway, I hope I have your fully support.  Thanks again for your assistance in advance.

 

 

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