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.


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.

ETran and Music Concert

First Ride on ETran

Ever since this all started back in January and I was put on meds where my cognitive abilities were questionable I decided that I shouldn’t drive.  And then it was confirmed by my doctor that should not drive on the May 7thcocktail of meds that I was on…so I refrained from driving.  Besides friends who have been so kind to come and take me places (Carrie McHugh David, Dawn Tomlin, and Christina Coblentz Yoder). and of course my family (Sherry and Bob Weaver) I feel trapped at home not being able to drive however most days I didn’t really want to leave my house so it was ok.   But I was ready to get out and out about a little.

But Mindy a dear friend that has MS learned of a service in her county that would pick up and drop off at her house.  For her this was wonderful, so she could go to Dr. apts, take the kids places, have options.  So I looked into my county and they had a similar service, called ETran.  This was my first trip on ETran.  It is really pretty bumpy out on the country/dirt roads, but at least I was able to go to my physical therapy appointment on my own.  The bumps in the road did however escalate my head pain. Just hoping that it won’t turn into a migraine.  It is a great feeling knowing that I have a way to get places if I don’t get too ill from all the jarring. Should be a short ride though.  Unfortunately I did have to take Zofran for nausea but the head pain only escalated to a 3.

I had my first Physical Therapy appointment today.  In Charlotte, Hayes Green Beach Hospital has all of their physical therapists located at Alive.   I was assigned to Luke who had had experience with Neurology and Head pain patients.  He was great but man did it hurt my head 😦

Josiah’s Music Concert

IMG_4539In the evening I had to go to Josiah’s concert and I so badly wanted to go, but my head pain continued to increase, and the anxiety of being in crowd was very real.  But I took a Toradol shot and used ear plugs and was able to get through the concert.   I was so glad that I got to attend an event for the first time in a long time.  Josiah is up front on the left with the solid blue shirt and jeans.