Bethanys Making It Simple
Welcome to my blog....it's about...everything...
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Thursday, May 26, 2016
Updates
I've even been able to go for 3 mile walks or runs. Not every day, but several days a week. This is where my UCTD comes into play.
Now as far as my UCTD goes, it's going. I had my bi-yearly blood count done in April, and it wasn't the best. I knew before I had that done that my platelets were low. I have been more tired than usual for several months. What I didn't know, was that my white blood cell count had dropped too. So, all you sickies....stay away from me. LOL...
Running with UCTD is a challenge. I start off great. Sometimes I can run and do 3 miles, other times, I run and can only do 1 or 2. I don't quit, but I do walk then. UCTD is an energy zapper, no matter what is going on.
Tuesday, September 9, 2014
Cluster Headaches...."The Beast"
Please know that I write these blogs in hopes of finding others out there like me. Some may be suffereing from being misdiagnosed, like I was for 7 1/2 years. I am not looking for sympathy. Just knowledge. Also know that when I am "busy" it is because I know this "Beast" will return within a few weeks. I have to get things done. I lose 6-8 days at a time when they hit. That may not seem like much, but in a year, that is 48-60 lost days. With these, combined with UCTD, I am an insomniac during the cycle. That is from the pain. I sleep, if you can call it that, sitting up. I can feel the veins in the back of my head and neck pulsating. I put ice on my head to the point of my skin getting burned. My others senses are highly elevated. Whispering can feel like a bomb in my head. Food smells and tastes awful. I fidgit trying to find a way to rest. I will sometimes sleep on the cold floor to relieve some of the pressure. No lights. I take shots and tablets to help. Sometimes they work for 6-10 hours, sometimes 2-3 hours. I am limited to the amount I can take of each. Most CH start in the middle of the night and I hate getting up to go give myself a shot. My leg is one big bruise from the shots this past week. I can't even think of going back to work or school with those kinds of numbers. I am thankful for the folks that I do work for and their understanding when I have to call off or rearrange my week.
I am blessed with an amazing family and group of friends that let me vent during these cycles. I try not to vent very often...there are so many people out there worse off than me. I have several friends dealing with the ravages of cancer. I can deal with this. As long as I have these, I will continue to educate myself and try to find the treatment that works for me. If I can help 1 person with CH and get them to the right website or right doctor, then it is worth blogging about.
Here's a link to the CH website. www.clusterheadaches.com. So much information out there.
Wednesday, July 30, 2014
Cluster Headaches
Saturday, July 19, 2014
Crock pot refried beans
Here is her recipe....just know, I do not measure, so have exact measurements to give you is a treat. I dislike all the unnecessary dishes.
2 cups pinto beans, washed and sorted ( or 1 16oz bag)
1/4 t. garlic powder (1 clove of garlic works too)
1/2 a large onion
1 1/2t. seasoned salt ( I added about a tsp. more when I gave them a taste)
1 t. cumin
pinch of cayenne
6 cups of water
Spray your cooker. Throw all ingredients in pot and turn on high for 8 hours. At the end of 8 hours, removed onion and any excess water. I then ran my immersion blender through the beans to make them smooth. Serve.
**note**
My family added a nice dose of hot sauce and cheese on top. I could just eat them plain.
Enjoy~
Tuesday, June 3, 2014
UCTD and headaches
What a wild few months I've had. I have a new neurologist since I received my VA benefits. He is a blessing! After 7 1/2 years of being told and being treated for migraine headaches, he did further testing and has come to the conclusion that these are cluster headaches. Generally speaking, women are seldom the victim of cluster headaches. What is a cluster headache? It is hell~worse than a migraine. It is called the suicide headache. This headache is rarely treatable with migraine medicine alone. Cluster headaches go in cycles. Cluster headaches generally start at night. Mine start between 10 PM and 1 AM. Mine for instance, arrive every 3 weeks like clockwork. If it is starting on the left side of my head, I get a horrible tooth, jaw and eye pain for 24 hours. There is no chewing of food. Then, I get pain so severe it travels from the eye to the back of my head for up to 3 days. Once this headache is gone, I generally have a one day reprieve before part 2 begins. Migraine meds rarely worked. I eat Maxalt like candy. If the headache begins on the right side of my head, I wake up with blurred vision in my right eye. Then, my hands hurt so bad that I can't make a fist. Towards the middle of the day I must sleep. I get so tired I can't function. Once the headache starts, it travels from behind the eye to the back of my head. I can feel the vein pulsating. I can't sleep lying down because of the pressure on the back of my head. I sleep maybe 2 or 3 hours. During the headache, on either side, I can seldom move off the couch. Sounds are unbearable. Indoor lights don't bother me, but sunshine beating down on me is painful. These also last 3 days. So, one week a month, I have this headache. Youtube has very graphic videos of cluster headaches. I am thankful that mine are not as bad as the ones I've seen.
Conventional treatments I've tried.
- Maxalt
- Topomax (Dope-a-max)
- Inderal
-
Tylenol with codeine
- Sumatriptipan shots
Natural remedies
Gatorade
Caffeine
Black Cumin Seed Oil (liquid and gel cap)
Magnesium Oil
Feverfew
Turmeric
Ice, heat, both
Epsom salt baths
Honey and cayenne pepper
Ginger (mostly for nausea)
And so many more that I have forgotten about. 7 1/2 years of every remedie known....
So far so good with this new neurologist. He has a treatment plan in place and we are still keeping track of these cluster headaches. I am continuing with Maxalt, but we have added Verapamil. This is a blood pressure medicine. I do NOT have high blood pressure, exactly the opposite, until right before the headache. Then my blood pressure shoots up. We were on 120 mg a day, but have recently moved it up to 180 mg a day. I am completing my first full month on this medicine. Results...part one of the headache was less pain and 1 fewer day. Part 2....not too much of a difference. The right side of my head is the one that is the worst. This time I had to use my injection. A plus with both headaches, I was able to get up and move around, even go to a party.
I have now been on Verapil 180 mg for over a month. I did get part 1 of the headache on my left side and it was awful. With that being said, I had just had an extremely busy two weeks with very little rest. It is 10 days later and part two hasn't started. I did get just a few minor pangs, but after work decided to be "quiet" and rest. This morning I feel great and plan on going for a run before work.
Today it has been more than 3 weeks and no sign of headache part 2. I am a happy girl! This is the longest I have gone without a headache in 7 1/2 years. Could this be the "cure" for me?
Since I've not had these headaches, I am back to running. I ran 3 miles several times in the past week. I love to run. It is my time. My time to reflect and talk to God. Unless you are a victim of cluster headaches or migraines that last for days, you can't imagine what a relief it is not having to schedule every little thing I do around them.
Tuesday, April 1, 2014
Buffalo Bleu Burgers
This is a go-to favorite for burgers~ you can use beef, chicken or turkey
1 lb. ground meat
4 Tbsp. buffalo wing sauce
1/4 cup bleu cheese crumbles
1/4 cup diced celery
Mix all ingredients together and shape into burgers or meatballs. Cook
**NOTE**
I usually double or triple the batch. I make half burgers and half meatballs. I freeze the meatballs for another meal. Top with whatever toppings you like. I enjoy bleu cheese dressing, tomatoes and lettuce on mine.
My Amish Macaroni Salad
This has got to be the best macaroni salad out there~ I've been using this recipe for years.
2 cups uncooked macaroni (this makes 4 cups cooked)
1/2 small onion, diced
1 stalk celery, diced
1 carrot, diced
1/4 green bell pepper, diced
2 t. sweet relish
2 cups mayonnaise (don't use Marzetti's)
3 Tbsp. yellow mustard
1/3 cup sugar
2 t apple cider vinegar
1/4 t salt
1/2 t celery seed
1-2 hard cooked eggs (sliced)
Cook pasta and drain well. Dice veggies, sit aside. Combine mayo, mustard, sugar and vinegar. Whisk well. Allow sugar to blend so it is not grainy. Once this is smooth, add pasta and veggies. Stir to mix well. When serving, I top the pasta with sliced hard cooked eggs. Some versions of this recipe has the egg combined. I think it looks better placed on top of the pasta.
**NOTE**
You can eliminate any of the veggies that are not to your liking. Also, you can use dill relish. Either way is fine. I've used both!