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.

2

How can I forget so easily?

Even though I have found that prednisone works like a miracle drug for me and takes away my migraines and headaches for the number of days, the aftermath is not so much fun.  It is as if the week of freedom makes me completely forget about what it’s like to have migraines, what the symptoms are leading up to the migraine, what happens to me during the migraine and especially the day following the migraine.  This week came as if it was a complete surprise to me.  Every time I have gone on prednisone I have had a really bad week following, so should have known, but it was nowhere in my memory as I drudged through the week.IMG_7959

Luckily I had enough medication to get me through Monday, which was spent all day in the Pediatric ER at Sparrow.  8 hours of sitting, waiting, trying to make Gideon comfortable, dealing with fever, puking, pain.  It was a good reminder of what my friends and family have done for me over the past year.  And I was very thankful that my migraine had not returned yet.  But it was the last day of the prednisone…so now I just had to wait for the head pain and migraine to come again.
12742637_1745763652304281_8267423894534451792_nI didn’t have to wait long.  Tuesday morning I awoke with the beginnings of a migraine and the regular head pain had returned.  By the end of the day the migraine had kicked in full gear, so I took a triptan, which helped me get through the day…but I was woken up at various points in the night with the pain and then remained in bed all of Wed and Thurs. The pain was almost unbearable at times.  This happens when both the migraine and the new daily persistent headache are both competing for top spot on my pain scale.  I got a lot of use out of my IceKap and I even brought out the eye patch I bough in case it might help with the severe light sensitivity I get during the bad migraines.  I spent a good deal of time sleeping, but I also watched a good deal of NCIS on my right side with my right eye close and one ear plug in my left ear.  This minimized sound, brightness and business and allows me to block out the pain for periods of time.  This migraine also brought on a great deal of jaw pain and so I pulled out my bite guard…it was as if I had to pull everything out of my aresanol to deal with this big whopping migraine.

I had already decided I would take meds on Friday morning to help with the pain if it remained and it did.  So I took my migraine cocktail (Toradol, Zofran and Benedryl) and a triptan for good measure and went back to sleep for 4 more hours.  The rest of the day I thought I was feeling drugged and then remembered the postdrome symptoms and I was smack dab in the middle of them.  How could one week of relief make me forget how all of this works.

When I woke up Saturday (today) I felt great and I took Gideon to swim, went to CVS and to QD to get our after swim donuts (and milk and orange juice).  When I got home I asked if everyone wanted to go into town later because I was feeling great, but I just needed a nap).  Again how could I forget what 4 days of solitude, tucked away in my dark and quiet room does to me…It makes me fatigue easily and makes dealing with chaotic situations not so well.  But I had forgotten all of that and we headed into town.  After doing a return at Kohl’s and doing some shopping, I was whipped and couldn’t figure out why.  By the time we left the store I was so irritable because the boys were being boys (not even being bad, just noisy and busy: chaotic).  We had planned on going out to eat and just going inside the restaurant kicked up my anxiety a notch that when I came back to the car I had to put ear plugs in and ended up having to keep them in the entire evening.  By the time we were done eating, there was no way I was going to be able to go grocery shopping too.  How could I forget all of this during a one week of reprieve??  It is beyond me!  But thankfully I am on the flip side of that migraine and I will take it easy tomorrow in the hopes that it will keep another migraine from coming on so quickly as it tends to do these days.

0

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.

12662513_10153855018306897_4699274972519157286_n

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 😉

1901622_10152203573591897_130022581_n

0

Imitrex…Side Effects

1/28/16 I HATE IMITREX!  The side effects are so awful that I just don’t like to take it. My heart begins to race, my chest tightens, my throat constricts making it t difficult to breath. HOWEVER, it seems to be the drug that actually helps knock down the migraine that occurs over my right eye, the classic migraine that I fight often. I’m not sure how long the good effects last because I am starting to feel it creep back up, but it’s something.   BUT DID I TELL YOU THAT I HATE IMITREX. Why does the medication that causes the most terrible side effects have to be the one that may help with the migraine. Ugh!  But I am thankful that there are a few options out there now to treat the different types of migraines that I suffer from.  Some people don’t even have that, so I shouldn’t be complaining.  When I looked up my side effects though, it says to discontinue and to seek immediate medical help because the medication also has the side effect of heart problems that can be masked by the side effects I am having, so I would have no idea if I was in real trouble.

So in the mean time I will take Imitrex if I feel a classic migraine coming on.  Prednisone will be reserved for long trips or very important events for the time being and Toradol and Robaxon work well to manage the tension migraines and New Daily persistent Headaches.  I feel like I am gaining a little bit of control over this demon, but am a long ways from finding the medication that prevents the migraines/head pain/headaches from happening.  One step at a time.  I go back to MHNI next Tuesday to work on a new plan of attack.  I have ideas and am learning so much about my migraines and patterns through writing this blog, that I feel like I am finally putting the pieces of a puzzle together.  And though it is far from complete at least the outside edges are getting closer to being done.

All I know is that because of Imitrex I was able to pick up my son from school when he called saying that his thumb really hurt, run errands and take him to the Dr. in E. Lansing yesterday and this is all after waking with a migraine and not being sure if I would make it out of bed.

I am glad we were able to get in to Josiah’s Dr. yesterday though because the splint they put him in at the Emergency Room was really cutting off the circulation and causing a great deal of swelling even after we had already loosened it.  They also determined that the fracture that the ER dr. saw wasn’t really a fracture.  But because of the bruising and the areas the hand and thumb are sensitive, they said he likely sprained it pretty bad.  We go back in 2 weeks to find out how he is feeling, but for now he loves his new Spiderman boot splint in his favorite color!!  It is pretty cool if I might say so myself.  He can take it off to take a bath, but for now he keeps it on all the time.  When you just look at the splint it looks like any other, but it is actually hard and formed to his hand just like a cast, but this one can be removed.  He was happy and the swelling went down rather quickly.  So hopefully the pain will go down too 🙂

0

Stabbing pain…

The last 48 hours have been pretty rough. I am suffering from a classic migraine which means I feel like I am being stabbed in my right eyebrow and the four head above it.  I also couldn’t stand up due to the pain.  This isn’t the first classic migraine I’ve suffered from it feels like it’s been the most painful one at least for a long time anyway. So I have been in bed for another full day.

image

I couldn’t handle the pain when I awoke suddenly at five in the morning, so I somehow managed to get my injection stuff around with one eye open and did a Toradol shot which helped relax me enough to go back to sleep. And I was able to sleep on and off all morning. Finally around 1:00pm the Toradol had worn off and had to do another shot.   I was able to get to the couch and sit up for a half an to eat but I went right back to bed.

Best part about being in bed for so many hours straight…Bones!  The only bummer is that I am almost done with last season on Netflix.  I’m going to have to find another show to start soon.

The worst part about being in bed for so many hours/days straight is the recovery from that. Every time I stay in bed for more than a day, the following week is spent recovering from the farugula and the deconditioning occurs will being in bed for so long.

0

After Vacation…Back to Reality

As much fun as all my adventuring looked it took quite a toll. Compared to Canada where I had no worries, I didn’t over exert myself, I took naps everyday and all the relaxation resulted in hardly any head pain at all. The second part of our trip was a lot of fun but we did so much. The hikes looked fun but I had head pain at every turn. Sometimes severe! But I so badly just wanted to get away from head pain that I pushed and pushed and by Sat night I had hit a wall. I was down by 6:00, had no interest in dinner and slept fitfully through the night. The ride home was long but I stayed alert because that’s all I could do through the storms and driving at dusk through storm debris.

The drive took its toll but when I got home and came back to reality, I remembered all the bills piling up, the inspections on the old house to be done, the long term disability paperwork that came telling me that none of the Drs and hospitals had sent in any paperwork and short term disability ends in 4 days, the small claims suit from the old renters that needed clarifying with the court, prescriptions to be picked up and a $1000 prescription bill to get refunded because Cobra took so long I had to pay out of pocket, oh and Gideon had to register for preschool today which meant filling out all necessary paperwork and gathering all documents needed and then pick him up because I thought this was when they got to see the school and meet teachers but it was just all paperwork, and then I had to pick up milk and then get Josiah and come home to take a nap only to be interrupted by a phone call from my Drs office saying they reviewed my case and are extending my leave through the end of November but none of the paperwork has been started and wasn’t sure when they would get it in, and finally another call from the well and septic guy telling how much the inspection would be plus they would likely have to dig the well. We have always been nervous that they would make us drill a new well…now we will finally know. So now I lay back in bed not feeling well and with very bad head pain 😓.

I haven’t been posting about my head pain because it was becoming my life and I hated that but the fact is, it is my life that is why the diagnosis includes “new daily persistent headache” which means it never really goes away. I just need to learn ways to live with the pain like putting ear plugs in to go to church, into restaurants or basically anywhere where things are loud and chaotic, which means sometimes in my own home or car when the kids are with me. Or sleep, this I am good at but naps don’t work when you don’t or can’t take them. Or take the medicine that I can only take two times a week for pain because there is no alternative.

Our live have completely changed for this season in our lives. I know I am better than 6 months ago but then again I am not because it still has control over my life everyday. I go back to the Head Pain clinic next Monday. So we will see what the next steps are on this journey.

Mindy Richmond: Heather I Am so sorry all this is going on, but you know I’m praying extra hard for you. Remember God is fighting for you still, just take one day, one hour if needed, at a time. You will get through this and will look back and be amazed at what you have survived and endured. I love you!
Stephanie Jordan Grr.. too much. Praying that the Lord will make His power and peace known in this situation. Love you.
Heather Loose Johnson: Love you guys too. Thank you for being there for me and lifting me in prayer. Sometimes it’s just too much to carry frown emoticon
Shannen Rowe Dubose: That’s A LOT to deal with! I’ll continue praying for you Heather.
Heather Dwyer Trudeau: I was wondering how you were doing, so I’m glad you posted. You continue to be in my prayers
Kathy Smith: Praying for you, honey.
Kristen Long: Hang in there. Text me about lunch Monday if timing works out with your appts. Or if you just want to come over and chat for a bit.
John Silverstone: Still praying.
0

Botox: MHNI visit #6

6/18/15 My insurance company finally approved the Botox for 3 rounds of injections through the end of the year. Headaches have been pretty awful lately so I am really hoping this does something positive.

June 18th

Botox is done. It was awful…30 injections in my face, around my head, down my neck and shoulders.  So yay!  No more wrinkles.  I did have to do a Toradol shot, so I am feeling a lot better now.  So my mom and I went off to lunch at Five Guys Burger where I was sorely disappointed because their fries are deep fried in Peanut Oil (allergic to peanuts) and the oil was everywhere. Just hoping I don’t have a reaction. Then off to Trader Joes where I bought spicy California roll and the very best spicy black bean dip!

On our way home to rest. Long morning!!  Unfortunately the peanut oil or the California roll hit me bad on the drive home…first the bloating (I can literally feel my pants get tighter) then the gas and then the cramping.  Luckily I had my antihistamines with me and took it but I always feel crappy for several hours after..until the bloating and gas and cramping stop.

So all in all a fun day 🙂  Haha!