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Prednisone–>I always over due it!

Thursday May 6th: First day of prednisone 20mg!  I should have taken my friend Jennifer’s advice today when I felt so good. On the one hand it was a wonderful day. Started my day being able to fold some laundry and get some phone calls made. I went to a garage sale, had a good Dr apt, back to garage sale to get some amazing clothes that almost all fit. That’s always a big win. Then I texted Dawn to see what she was up too and we both ended up with beautiful pedicures. I had a thumb drive to drop off to Meaghan  (hopefully you got it) and realized I was 2 miles from where she lived to drop it off. One more thing crossed off of my list. I had heard back from my friend Carrie that she was nearby too so I stopped and chatted with her and her mom Ruthanne for an hour or so. On my way home I stopped at our old day care family and all the little babies just called me in. And I was off to pick up the boys just in time to get them off the bus, but talked on the phone to my mom  for the entire drive. Did I tell you that talking is a major migraine trigger. Dan had a water loss and it was beautiful outside so the boys got the burn pile done and then got out water balloons and the launcher. We had a fun time just hanging out. And if that wasn’t enough for the night we met up with Dan in Potterville for dinner at Charlie’s Bar and Grill.  Then home to put the boys to bed and crash. My head had started to hurt already but I was able to fall asleep.

Friday May 7th: Now here is when I should have listened to Jennifer, I should not have done so much on the first day of prednisone…it’s a trick, all the energy was from the pill. So I would pay for all the fun and activity and talking.  I woke with the most excrutiating pain I have felt in a long time. The pain was coming from all directions in my head. I felt like I was under attack. I tried my IceKap but it made this one worse. Finally after taking my meds including prednisone and putting warm heat on my head, I fell asleep. When I woke the pain was down but not very functional. So today I rest! And Mindy I am so sorry I can’t come for a visit today. Hopefully next week.

My neighbor also stopped by to drop off an ottoman that I bought at her garage sale and forgot to take. We got talking about migraines (imagine that) but she suffers too 😓. So I had to show her my icekap but that meant showing our house and talking for a half an hour, plus the house is a disaster but she understood. Sad to hear of another friend whose migraines are getting more frequent and more difficult to treat. Selfishly glad to have a neighbor to talk to about migraine stuff but it sucks for both of us at the same time.

13133092_10154089587201897_5739522844633282669_n (1)I did realize something today. Well not really today, but something new about one of my migraines; the one that hit this morning. Laying down isn’t the answer for this one. As soon as I stood up the pain lessened. So I made myself a Mac and cheese cup and am sitting on the porch enjoying this beautiful day. Migraines are so complex especially when you have varying types but I am so glad I decided to stand up and go outside. But now the birds beautiful songs are starting to get to me. 😕. It was still lovely getting outside but still relaxing.

 

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7

SSDI Awarded

I was told that it would take at least more than once to apply for social security disability insurance, so when I received the letter awarding me SSDI today, I was so very grateful.  I still have long term disability that will run through December of this year (at least the balance of what I was already getting minus SSDI).  Very relieved and I won’t have to submit anymore paper work until December for review.  So for that it was a good day!

On the flip side, the migraine side, the daily life side; my New Daily Persistent Headaches have been really bad lately and very persistent.  So much so that walking through a store, using a computer, watching TV, talking or driving are major triggers.  And when the NDPH are bad, the worse the triggers cause an increase the head pain.  The constant pain in turn makes me very tired, so I sleep a lot (16 hours a day).  I think the meds I am on are also contributing, but the constant pain also contributes.  So the only reason I am writing a blog post is because I did a Toradol shot.

In addition tonight I had an allergic reaction to something in the house, something I ate??? I don’t really know what caused it this time and it was the itchy eye, congestion type of allergic reaction.  I took a Zyrtec, in addition to the Toradol and put a cold pack on my eyes.  Great combo 😛  But starting to feel better now.

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Not posting for days can mean…..

2/10/2016

  1. That I have been completely down with Migraines and just can’t get to my computer to post anything

or

2. I have not had a single migraine and I have been busy doing things like laundry, packing for a trip, running errands and taking care of a sick kid.

Luckily for me and my family I had a nice long stretch without a migraine…6 whole days!  This was the longest stretch I have had without pain medication, nerve blocks, facet blocks, etc. and no migraine.  The daily head pain was there the entire time, but at a very low level and there were even periods of time where I didn’t even notice the headache.  I felt very fortunate that I was able to be with Gideon during his week off of school (even though my increase in meds made me incredible tired).  Luckily Gideon loves to just hang out and watch cartoons and YouTube videos.  If we weren’t running errands, we were hanging out in bed watching videos.  Gideon was finally feeling better by the end of the week and went back to school on Monday…I think we were both ready for that!  With the addition of Flexeril as a nightly preventative med and increasing my Robaxon (both muscle relaxers) I slept a lot this week.  But when I was awake, I had huge bursts of energy and was able to do laundry and pack bit by bit for our trip to FL.

My migraine free days came to an end last night.  And when it came to an end, it resulted in 0-5, full blown migraine in the matter of about 10 minutes.  The only triggers that I can think of was talking on the phone and computer time balancing my checkbook.  At any rate I went straight to bed. I woke up at 3:30 am and the migraine was still raging, but I didn’t want to take any medication if I could get back to sleep.  So I put my IceKap on with nice cool gel packs and was able to fall asleep, waking up on and off, for 2 more hours.  When I woke at 5:30 am I couldn’t handle the pain anymore, so I tried Imitrex first because I was suffering from both the classic migraine (stabbing pain over the eye) and the tension migraine (Pressure and swelling around my entire head).  Imitrex barely touched it, so after a half an hour, I changed out my gel packs for cool ones, and did my morning medications plus the migraine cocktail (Toradolx2, benedrylx2 and Robaxonx2 was already part of my morning meds).  An hour later, the migraine was completely gone and I was able to complete all of my tasks that I needed to accomplish today; safety recalls taken care of my van (and we got 2 bran new key fobs…so exciting), shopping and lunch with my friend Mindy and one of the longest oil changes ever, but at least the car is all set for the big trip tomorrow.

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And now that we are pretty much packed, with the exception of the last minute stuff, I could use lots of prayers as we travel 15 hours.  Just hoping and praying for low to no head pain…but I packed my arsenal of abortive meds if I do end up with one…so I feel prepared.  We pick the boys up after school and head straight out!  We are all pretty excited!!  Just a quick picture to leave you with from our last trip to Destin, Fl…such a beautiful place!  I can’t wait to go for a walk along the beach 😉

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My New Normal takes a Turn in the Road

1/31/16 The past few days have been quite a roller coaster.  And though this post is mostly about food intolerance, there is a possibility there is a link between my migraines and food sensitivities.

I had a migraine every day last week and by Thursday night I had run out of abortive medications and was still in migraine mode, only without anymore pain relievers.  So I used what I had in my migraine toolbox to help manage the pain the best I could: dark, quiet, my new IceKap and my iPad with an ear bud to minimize sound and distract my brain from the pain.

Thursday was also the day I picked up the results of my food sensitivities and intolerance.  My first response was “there is no way my mind can take this in with this kind of head pain and I am on my way to get my hair done”.  So I set it aside and mentioned a few brief things to Dan.  And then I went in my bedroom because my head was killing me and decided to compare my list of no-no foods to my stocked Crave Cave.  I can no longer eat any of them.  Then I came out to the cupboards and could find nothing that I could eat that didn’t have at least one ingredient from the list.  Then I started swearing, throwing things, crying…you name the emotion, I likely felt it except all the happy ones of course.

12651188_10153830137376897_9210018167551688087_nFriday sucked as much because I was still mad and now becoming very depressed because I didn’t know what to eat.  So I ate nothing for breakfast, a cheese stick for lunch and a tortilla for dinner.  The worst part of the day though was that my migraine was not only awful, but the light sensitivity was awful and it was extremely bright outside and I had to pick up the kids; Gideon from the bus stop, no big deal and then Josiah from school because Dan forgot about him and had to work late.  So the picture here is of me trying to drive with an awful migraine while trying to block the sun out of my right eye where I was already being stabbed from the inside.  But it really demonstrates how I really felt as well.

And now onto my main point of this entire blog post, the Food Intolerance/Food Sensitivity testing and what in the world I am going to do and eat for the foreseeable future.

Food Allergies: Here is the list of allergies that my family and I have been learning to live with since June of 2014.   Actual allergies measured by IgE enzyme may or may not show up on the food tolerance testing but a few did show up on both lists* (and this turned our families life upside down, but not begin to compare to the upheaval it will take in the coming months):

  1. Peanuts
  2. Almonds
  3. Walnuts*
  4. Pistachio*
  5. Coconut
  6. Avacado
  7. Cherry
  8. Melons*

 Severe intolerance: (which means these foods should be avoided for a minimum of 6 months):

  1. Anchovy (which I thought no big deal at first until I read that you find it in soy sauce and Worcestershire sauce and other fish sauces…possibly even Fish Oil supplements.
  2. Baker’s Yeast (which is in EVERYTHING, well just about anyway.  All breads of course, processed foods, crackers and many broths)
  3. Kale (which shouldn’t be a problem because I have not acquired a taste for it and we never buy it)
  4. Lentil Bean (something we enjoy making once in awhile in our house, but we can do without easy enough)
  5. Licorice (the flavor is found in a variety of candies, soft drinks, herbal teas and cough syrup)
  6. Portabello Mushrooms (Something I really like but we rarely ever buy them, so this shouldn’t be too hard to avoid)
  7. Zucchini squash (I do love zucchini bread and we finally found a way we love to cook it on the grill, but again, not really a hidden ingredient and it will just have to make it’s way off my to eat list.
  8. BHA (These are often added to foods to preserve fats and is found in butter, meats, cereals, chewing gum, baked goods, snack foods, dehydrated potatoes and beer.

Moderate Interolerance (which means these foods should be avoided for 3-6 months)

  1. Acorn squash
  2. Apricot
  3. Basil
  4. Bok Choy
  5. Cayenne Pepper
  6. Clove
  7. Fennel Seed
  8. High fructose corn syrup
  9. Green pea
  10. Honey
  11. Honey Dew melon
  12. Kelp
  13. Kidney bean
  14. Lima bean
  15. Mung bean
  16. Red Beet
  17. Safflower
  18. Scallions
  19. Watercress
  20. Citric Acid
  21. Green dye #3
  22. Acai Berry
  23. Glucosamine
  24. Goldenseal
  25. Grape seed Extract
  26. Huperzine
  27. Resveratrol
  28. Spirulina
  29. Ammonium Chloride
  30. Ampicillin (my doctors thought I might have a slight reaction to penicillin when I was young because I broke out in a rash, but I have had the z-pack since??)
  31. Piroxicam (not sure what medication this is?)

Mild Intolerance (which means these foods should be avoided)

  1. Black beans-so sad 😦
  2. Blueberry-my favorite fruit 😦
  3. Cannellini beans
  4. Cantaloupe
  5. Cauliflower
  6. Chia
  7. Chick pea (but I love humus)
  8. Chicory
  9. Chives
  10. Cinnamon
  11. Cocoa
  12. Cucumber
  13. Cumin
  14. Dandelion Leaf
  15. Date
  16. Egg Yolk
  17. Grape
  18. Guava
  19. Mango
  20. Mulberry
  21. Nutmeg
  22. Gluten free oat
  23. Paprika
  24. Peppermin
  25. Persimmon
  26. Pistachio
  27. Pomegranate
  28. Psyllium
  29. Radish
  30. Sesame
  31. Spearmint
  32. Sunflower
  33. Turnip
  34. Wakame seawee
  35. Walnut
  36. Yellow Squash
  37. Cane sugar
  38. Maple sugar
  39. Barley
  40. Malt
  41. Rye
  42. Spelt
  43. Wheat
  44. Gliadin
  45. Agave
  46. Ashwaganha (wah?)
  47. Barley Grass
  48. Chlorella
  49. Chondroitin
  50. Elderberry
  51. Essiac
  52. Goji Berry
  53. Milk Thistle
  54. Mullein Leaf
  55. Rooibos tea
  56. Benzoic Acid
  57. Brilliant Black
  58. Red #4 Carmine
  59. Red #40 Allura red
  60. Nickel Sulfate
  61. Aspirin
  62. Ibuprofen
  63. Aleve
  64. Neomysin
  65. Penisillamine
  66. Tetracycline
  67. Voltaren??

SO WHAT THE HELL AM I SUPPOSED TO EAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

They gave me a food rotation list, but I am still not sure how that works.  The test results came with a 30 minute call to a nutritionist that may be able to help me get on the right path.  And then they gave me the list of Foods to Avoid:

  1. Acorn squash
  2. Anchovy
  3. Apricot
  4. Baker’s Yeast
  5. Basil
  6. Bok Choy
  7. Cayenne Pepper
  8. Clove
  9. Fennel Seed
  10. High Fructose corn syrup, better known as Corn Syrup or Fructose
  11. Green pea
  12. Honey
  13. Honeydew melon
  14. Kale
  15. Kelp
  16. Kidney Bean
  17. Lentil Bean
  18. Licorice
  19. Lima Bean
  20. Mung Bean
  21. Portobello Mushroom
  22. Red Beet
  23. Safflower (oil and margarine, also in diet mayo and diet salad dressing)
  24. Scallions
  25. Watercress (a main ingredient in V8)
  26. Zucchini

So in the end I have no idea how I will even begin to manage this and it won’t come easily or quickly…but it sure might explain why my stomach or lower abdomen hurts to some extent daily.  And then I have flair ups that the doctors have always just deemed IBS (which I believe I do have symptoms of that as well, but still).  Part of me wishes that I never took this test, that I never knew the results because they make me angry and I feel like I can’t eat anything.  So I have had much grieving over the past few days and not eating.  Dan tried to pick up a few things at the store for me, but when you are only looking for a few of the issues, there seems to be 5 other ingredients that are on this list.  But he is trying.  He also made us steamed fresh broccoli, ham steaks (that had no indication of additives that I couldn’t have) and plain white rice with a little salt.)  And it felt good to know that there was a meal that I could possibly eat.  And to know that I have a spouse on my side (like he has been through it all).

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I go to my Head Pain doctors on Tuesday and I am going to ask him he thinks that it is worthwhile to test for Celiac Disease.  I read an article about the relation of having a food allergy to Baker’s Yeast and CD and though I have not been tested for the food allergy I at least have some basis to be tested.  Headaches, fatigue, acid reflux, etc are also symptoms of CD.  So it might not hurt to at least get tested at this point.

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An Update

Starting with the positives. The neurologist did the nerve block again and again with success. And although temporary it means that I not only have some headache free days over the next week as along as I don’t push it, but it also means that I am a good candidate for the radio frequency nerve ablation, where they basically kill the nerve that is giving me such terrible headaches. I meet with the Pain Specialist next Monday for a consult and will hopefully get that scheduled, however they are scheduling 6-8 weeks out. This will be a more permanent solution whereas the nerve blocks at most last a week.

They are also checking with my insurance company about Botox injections to see if they are covered. The neurologist is hoping that ablation in combination with the Botox and medication (of which I am now only on one called Lyrica) should treat all three headaches that I have going on at any given time.

The physical therapist also gave me a script for a tens unit to help between now and when all of the above have been completed and take affect. I am also going to physical therapy and for the first time in a long time the majority of the tension in my neck is relieved. So that is wonderful.

My next apt with the neurologist is June 10th and so my return to work date is June 10th. My FMLA runs out May 25th, so I am not sure what that will mean for my job. Trying pretty hard to put this all in God’s hands because it is truly out of my control. I really would hate to lose that job, it was one of the best jobs I have had and it was such a great company to work for, but at this point there is no way I could possibly work. When all 3 headaches decide to be present I am down for about 3 days, in bed all day. And although I am learning some of the triggers and can try to avoid them, talking is one of my biggest triggers as well as bending over or looking down, chin to chest. I have also found that using my arms out in front of me quite quickly brings on at least one of the headaches.

So again I say this is all in God’s hands at this point and I have to rely fully on him.

March 3rd

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Familial Tremors and 72 hr Migraine

Sherry Dunne Weaver, Aunt Merry Dunne Blades, and  Teresa Blades Jagielski, you guys will get a kick out of this.

Last night at dinner Gideon looked over at me and said “you are shaking just like Grandma” and then he demonstrated by shaking his spoon as he took his next bite. Unbelievable that a 4 year old would notice that. I’ve always had slight tremors called familial tremors but my meds have intensified them so that even if I am standing in one place to long my butt shakes :).

Familial tremor is an involuntary shaking movement that tends to run in families. Involuntary means you shake without trying to do so.

Sherry Dunne WeaverLove this!! Josiah probably never notices!!
Heather Loose JohnsonNope he had no idea what Gideon was talking about. Such different personalities wink emoticon
Merry Dunne Blades: Oh Gideon you are so observant. Plus he must have a good memory since he was pretty little when Grama passed. Uncle Gary has the tremors really bad and I am sure it has to do with all the meds he takes but the Dr says No. Not sure the Drs know everything.  Heather, I just realized Gideon was talking about your Mom. I just don’t think of her as a Grama !!! HaHa
Teresa Blades Jagielskipeople that don’t know me often say why are you shaking, did you drink too much coffee? If only it was that simple.
Today my morning was pretty pain free, but as the day went on the pain progressed quite quickly.  A friend came over for lunch and we chatted and chatted.  Which unfortunately is one of my main triggers.  But sometimes, talking with friends trumps the fear of the migraine (that is until the migraine hits and hits hard).  The pain that followed that night was unbelievable in my forehead and throughout my entire head.  I ended up taking Toradol, Benedryl and Zofran (the migraine cocktail) in order to sleep.
The migraine continued into the next day, Saturday, and I was in bed all day, but had great difficulty falling asleep due to the pain.  The pain settled behind my right eye and lasted into Sunday morning with the same pain between my eyes and especially behind my right eye.
This migraine continues to follow the 72 hour migraine, the end of the day on Sunday I was just feeling groggy and in a fog which I learn out much later is called a migraine hangover.
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My 3-day Migraine patter begins to Emerge

Saturday May 2nd: In bed all day, completely non-functional with a tension headache that returned along with the pain in my forehead (mostly between my eyes).  I had to take Toradol shot today and it did give me some relief, but not very functional

Sunday May 3rd: Same as Sat.  I was in bed all day and completely non-functional.  I also did a Toradol shot and used the spray for some fast relief to have dinner with the family.

Monday May 4th: The head pain finally let up a bit, the pain was back to my baseline of 3…so I decided to do some computer work (trying to get the house listed).  But the computer is a main trigger for migraines and my head pain increased to a 4 very quickly.  So I decided to take a shower to help relieve the pain and then rested for the rest of the night at a baseline of 3.

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