Monday, May 18, 2009

When I was a young girl I had this fantasy about what my life would be like when I was "OLD." Things never do turn out the way we fantasize they would.

A new page has been turned as far as my illnesses are concerned. I previously wrote about the seizures and that is still happening. Life is what it is. But I am not 100% positive that they are seizures. I believe that it's Lupus Celebritis rearing its ugly head in a huge way. I do not know how much longer I can write posts that would make much sense. I'm falling quite a bit and my eyesight is blurry most of the day. Hubby and the kids tell me I do things that are not normal. I cannot control this and when your brain is diseased there is no way to get a handle on it. I have a call into my doctor and am waiting anxiously for him to return it. So far he hasn't.

Please pray for me.

Again, I am going to quote my good friend, Lorettta........ I am not complaining........ just making a statement of facts. Thanks Loretta for that one.

Tuesday, May 12, 2009

On Thursday I will turn 52. For me this year it is nothing special except that I am still alive. And for that I am thankful.

Lupus has come back and reared it's ugly head once again. I am trying to deal with this the best way I know how to. Most of the time it works well. I manage to get through my day without much thought about what life has thrown my way. Lately I have been having a hard time with it. Things have been happening again. Flares have been coming more often and lasting a lot longer. The seizures have returned. That part is the hardest for me. Here in South Carolina (as I am sure it is in all the states) a person cannot operate a motor vehicle unless they have been seizure free for at least 6 months. Therefore I am confined to my home. My independence has been taken away from me. Where we live is very rural. There is no city transportation. Walking to shopping areas is unthinkable because they are so far away. I am left to depend upon others to drive me around. This makes me sad beyond sad. Not a day goes by that I do not end up crying. It has gotten to the point that when I wake up in the morning and after my meds take effect I get into the shower to let the hot water pound on my back to alleviate some of the pain and stiffness. Then I wash up. What am I going to do tday, I ask myself? I never have an answer because there is never anything to do. I get back in my pajamas do what little has to be done aroaund here and then I sit around. Sometimes I venture outside to weed and water my garden. Or I make a wreath or back something. Then it is still early so I sit and watch TV. Believe me there is nothing on worth watching during the day. But I watch it anyway.

I try not to complain. I try not to dwell on this stuff. But it is so very hard. I want my life to be the way it used to be. It should be the way it used ot be. I loved getting up and going to work. Not I feel useless.

Sunday, February 22, 2009

Please check out the following blog........ It will break your heart.

http://www.canada.com/vancouversun/story.html?id=489a4ee0-057e-4303-b558-3edb18c95eba

Thursday, February 19, 2009

IT IS WHAT IT IS



Life is what it is. Sometimes you can go to the left or to the right. I believe that it must be taken head on and we need to go straight ahead. Life may not necessary be the life I wanted. It is what has been intended for me. But whatever it is, my life has been predisposed. It is what it is.


My life is not what I had expected it to be at this age. I had never in my wildest expectations thought that I would be chronically ill at almost 52. Having a disease that there is no cure for and the treatment for is imaginative at its best. But I go on, or at least I try to go on. It is what it is.

Don't get me wrong, I still get depressed over this. But those spells are far and in between. They usually occur when I am in a particularly horrible Lupus flare. Otherwise I wrangle through my days. Taking solace that at this point what the universe has thrown at me is not yet life threatening. Painful yes. Brain draining, definitely. Confusing and disturbing, most assuredly. It is what it is.


Because I do live with this eventuality deep down in my psyche I am suspicious and at times I am waiting for the next shoe to drop. But it does not define me. It is what it is.


I maneuver through this life with a sense of tenacity. Recognizing my inability to veto any of this. It is what it is.


Overall, I am a exultant woman and attempt to navigate easily through my life. I may not always succeed, but I do try.


Therefore, even though my life is not what I had planned it to be .... I am accepting of what it is. Again.... It is what it is.


And, as a very dear friend once wrote..... I am not complaining ......... just making a statement of facts.


Every other aspect of my journey through this thing we call life is wonderful.

Thursday, January 29, 2009

I was asked if I could check my own INR. There was a time when I did do just that. But with the new health insurance I have now, they do not pay for the supplies unless you have an artificial heart valvue. I have the machine but those supplies are very expensive. I used to check my own by doing a finger stick and then call in the numbers to the local anti coagulation clinic and they would go over my dosage and make any necessary adjustments. I wish I could do that again.

Wednesday, January 28, 2009

Good Evening Friends!

I have been fighting the battle of Low INR. For those of you who do not know that is the number explaining how thick or thin my blood is. Too low and my blood is thick. Too high and my blood is too thin. It's been low. I've had about two or three TIAs this week. Finally this morning I ended up calling my doctor who told me to get right over to the hospital and get evaluated. I did that. They did the usual stuff. Took blood. Gave me a head CAT Scan. And, adequately treated the horrific head pain that always accompanies these episodes. I was referred to a Neurologist. I haven't been to one since we moved down here. I will call tomorrow and make an appointment.

Otherwise.........

I am HAPPY HAPPY HAPPY! Life is good. Hubby and I celebrated our Silver (25th) anniversary on the 16th. We went out for lobster (a gift from my son). My daughter gave me a gift certificate and gave her Dad a brick of bullets. He is into guns and has a carry permit. Then they surprised us with a party. We were really surprised. We got back from dinner and walked in the house and heard 'SURPRISE'. My brother and sister in-law gave us the best gift. It was a light weight vacuum so I don't have to sweep. It picks everything up. I suggest you get one. Mom gave us a few beautiful gifts and cash. It was wonderful.

That is not all that is making me happy. I am just feeling very content with my life. And, this is a good thing.

Sunday, January 18, 2009

Saturday, January 17, 2009

Meme
Snagged from JoAnne...
Saturday, January 17, 2009
Just boldface the items that you HAVE done, and leave the rest normal…
1. Started your own blog
2. Slept under the stars
3. Played in a band
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than you can afford to charity
7. Been to Disneyland/world
8. Climbed a mountain.
9. Held a praying mantis
10. Sang a solo
11. Bungee jumped
12. Visited Paris
13. Watched a lightning storm at sea
14. Taught yourself an art from scratch
15. Adopted a child
16. Had food poisoning
17. Walked to the top of the Statue of Liberty
18. Grown your own vegetables
19. Seen the Mona Lisa in France
20. Slept on an overnight train
21. Had a pillow fight
22. Hitch hiked
23. Taken a sick day when you’re not ill
24. Built a snow fort
25. Held a lamb
26. Gone skinny dipping.
27. Run a Marathon
28. Ridden in a gondola in Venice
29. Seen a total eclipse
30. Watched a sunrise or sunset
31. Hit a home run
32. Been on a cruise
33 Seen Niagara Falls in person
34. Visited the birthplace of your ancestors
35. Seen an Amish community
36. Taught yourself a new language
37. Had enough money to be truly satisfied
38. Seen the Leaning Tower of Pisa in person
39. Gone rock climbing
40. Seen Michelangelo’s David
41. Sung karaoke
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal in a restaurant
44. Visited Africa
45. Walked on a beach by moonlight
46. Been transported in an ambulance
47. Had your portrait painted
48. Gone deep sea fishing
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling
52. Kissed in the rain
53. Played in the mud
54. Gone to a drive-in theater
55. Been in a movie
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies
62. Gone whale watching
63. Gotten flowers for no reason
64. Donated blood, platelets, or plasma
65. Gone sky diving
66. Visited a Nazi Concentration Camp
67. Bounced a check
68. Flown in a helicopter
69. Saved a favorite childhood toy
70. Visited the Lincoln Memorial
71. Eaten Caviar
72. Pieced a quilt
73. Stood in Times Square
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in London
77. Broken a bone
78. Been on a speeding motorcycle
79. Seen the Grand Canyon in person
80. Published a book
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had your picture in the newspaper
85. Read the entire Bible
86. Visited the White House
87. Killed and prepared an animal for eating
88. Had chickenpox
89. Saved someone’s life
90. Sat on a jury
91. Met someone famous
92. Joined a book club
93. Lost a loved one
94. Had a baby
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a lawsuit
98. Owned a cell phone
99. Been stung by a bee