Category Archives: Friends

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MHNI #14

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March 31st, 2016: I remained at baseline NDPH all day which was a great relief compared to the days leading up to this visit.  I took an Amerge just to make sure that a migraine didn’t decide to join or that the NDPH didn’t increase.

I had such a great day.  My friend Dawn rode down with me and we talked all the way.  I drove and I talked and my head pain did not increase…it was wonderful.  I even drove home and talked on the phone for a good majority of the trip home since Dawn had food coma and I was trying to prevent going into food coma 😉

I was really worried about my appointments today because I had to tell them about Mayo Clinic, but it turns out they already knew because they all had to sign off on the records to go to Mayo.  They were very supportive and were anxious to hear any findings from Mayo.  What a relief!  And anxiety for no reason.  Oh well, I just didn’t want them to think I was going behind their back…I really just wanted to have someone look further into what might be causing the constant head pain.  Almost 15 months now!  Never how I imagined it would be, but have done my best to take it in stride.  So glad that my Dr’s at MHNI had my back about going to Mayo Clinic.  I leave in 5 days.

In between Dr. apts Dawn and I went shopping to 5 Below….great store, but you really have to limit yourself or you could spend way to much money without even knowing it.  And then we were going to meet up with my high school friends Kristen and Steve and their son Eli.  Unfortunately they were delayed and we only got to give hugs, say Hi and good-bye.  But the food at Olive Garden was awesome.  I hadn’t been there in so long.

Oh and I stayed awake all day!!!  Big deal for me really!  Thanks for making the trip with me Dawn…it was much needed girl time!

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Not posting for days can mean…..

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2/10/2016

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

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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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MHNI Visit #13

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2/2/2016 Yesterday I had my follow up with my Dr’s at MHNI yesterday.

I woke with a full blown migraine. I took my morning meds and an IMITREX, put my IceKap on and slept for an hour. When I woke up I felt so much better, thank goodness, because I had no idea how I would make it through the day.  Gideon took all of his meds like a champion this morning (thank goodness). He had to go with us to the Dr. appointments because he couldn’t go to school, I couldn’t drive and we didn’t want to expose anyone else to his multiple illnesses.  So he got to hang out in the car with us for the day. He is all set with electronics, movies and his new little stuffed animal. Then as we went to all get in the car, we had locked our one and only set of keys in the car. Luckily Dan is a pretty handy guy and we still had a metal hanger. Car unlocked, and only 15 minutes late. Then I downed some ice tea (caffeine) to further help knock out the migraine.

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My neurologist changed the triptan I was on (Imitrex) to a triptan called Amerge for an abortive med for the classic migraine, hoping it will have less side effects.   We also discussed adding Flexeril to my preventative meds for NDPH. He had read an article that people with NDPH have had great success with Flexeril, so I will be starting that tomorrow.  We will see how it goes. It is a low dose so hopefully I won’t have to many side effects.  The last change to my meds is to increase my migraine preventative medication, Robaxon to its maximum dosage to see if I had any better luck at a higher dose.  At my next office visit if my migraines haven’t gotten any better, we will try a new preventative med.  I didn’t want to add a new medication before our vacation. If the increase in this med doesn’t work, we try another at another at my next appointment. The goal is to find a med that will break the cycle of the migraines and NDPH and prevent further head pain. I also now have the option to make an apt for nerve blocks in my temples as needed every 6 weeks which thus far has been a miracle block.  I get an entire week of pain free.

2/3/2016 Today Gideon and I had a whirlwind day.  Josiah had a delay in school, so we drove him to school, so Gideon and I went to CVS to return our late Red box movies..ugh, we have to stop doing that!  And then I realized I forgot my prescriptions…ugh again!  We did manage to get to the post office to resend for the 3rd time documents to SSDI…ugh why do they keep losing my paperwork.  We drove back home to get the prescriptions…ugh.  Went back to CVS and then headed to Eaton Rapids for lunch with Dawn at McDonalds…Gideon was so excited!  Then a follow up with his Dr.  He is still full of illness 😦  Double ear infection still, swollen glands, sinuses completely blocked up.  So she prescribed prednisone to help all of the swelling (Is it bad that I want to keep the prednisone for myself 😛 and no I gave the steroid to Gideon.  He is feeling better, but just the energy level!  The rest of his little body still hurts.

Once we got home I passed out with a migraine on my left side (very unusual for me, most of my migraines are on the right side).  Still have a mild migraine but a good day overall.

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Lunch with a fellow Migraneur

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Though our time always flies when we get together, I am so thankful to have found someone like me, a Migraneur. Carrie has been there with me and I with her over the past year through the bad times and any success we achieve.  I feel so blessed to have her in my life. 

Today we had lunch at Riverside cafe in Eaton Rapids. Excellent food!!  And great company. It is always nice when our “good days” align. 

My Rueben and fries. Delish!!!  

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For my Future Self: Migraine Cave Update

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I did! I started purchasing things for my migraine cave!! I bought a small microwave off of the Eaton Rapids Virtual Yard sale for $15, I bought room darkening shades so I could take down the sheet from one window and the Mickey Mouse blanket from the other,

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I asked Dan if I could borrow his mini fridge from the garage until I can find another one, I bought a table at Goodwill for $10 (hoping the fridge will fit under and the microwave on top) stocked up on water, protein drinks, snacks, food that needs no prep and no storage and some fruit. Oh and oyster crackers of course. I also treated myself to two minion Tervis glasses that were on sale (but I have a feeling they may not stay in my possession for very long. I’ll keep them a secret as long as I can 🙂

It sounds like a lot for my recovery day, but like I have said when I am feeling at all functional I have to things done. Really I only went Goodwill quick, Walmart (in and out in under 10 minutes using a cart) and Meijer (also using a cart). But I am worn out now and am resting.

Looking forward to my friend Dawn coming over to make us Turkey noodle soup and frost some sugar cookies!!

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My Migraine Toolbox

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I suffer from three different types of headaches so there hasn’t been a day since January 21 of 2015 that I have had without head pain. However during that time I have kept a headache journal both for long-term disability reasons and because my doctors have asked too. I track my pain level at 4 points during the day, any abortive medications (like Toradol, Bendryl, Zofran, Robaxon) I have had to take to help with pain and what activities I was doing that day that may have contributed my head pain that day. This has been the most valuable part in creating my migraine tool box.

What is a Migraine Toolbox? It is being prepared for every type of head pain that could happen. It is knowing what medications will be beneficial and at what level of pain. It is researching what other migraneurs have in their toolbox.

My toolbox contains:
1. Preventative medications: I have tried so many and have had so many different reactions. My goal is to have that list of medications and reactions as part of my toolbox.

2. Abortive medications: these are for pain control in the midst of a headache/migraine and these too keep changing. I have tried many and very few work. But for now I have Toradol IM injections, Robaxon, Benedryl in pill form and Zofran for the nausea. I have also recently discovered Prednisone as the ultimate abortive medication but I can only take it sparingly.

3. Comfort items: it’s heat only for me so having microwaveable rice bags is very important. I often keep a crock pot in my bedroom for the worst days so I can simply rotate as needed. I also have an electric heating pad that is very helpful when I cannot get out of bed. I try to keep water at my bedside and am currently looking at putting a mini fridge in my room: see migraine cave. I also have ear plugs, my Theraspec glasses, injection supplies and a weeks worth of medication at my bedside. Oh yah and who could forget chocolate!!!

4. Creating a migraine cave: a place I can go that is dark, quiet and has everything I need when I have to hunker down for 72 hours. Currently I have sheets on my Windows but I want to replace them with Darkening blinds. Instead of the crock pot for heating rice bags I would like to get a mini microwave. I would also like to get a mini fridge so that I have a supply of water, ensure and other items that would keep in a fridge like cheese sticks etc. I have a fully functioning migraine cave but I would like a few upgrades.

5. Family and friends: on speed dial! For two reasons. I need to be able to call up someone when Dan has to take me to the hospital and know that someone on my list could watch the kids. But more importantly I need that family and friend list because they are my support system. They are who I call or text when I need support and they text or call me when they need support or just know that I do. I couldn’t have made it through this last year without any of you.

So if you suffer from migraines or any other chronic illness a toolbox is important to build for yourself so that you are always prepared or at least as prepared as you can be. And a journal is the best way to figure out what you need in your toolbox. I have also found that I now have a better understanding of what’s coming. For example; Friday night I started to get very irritable and a small pain started over my right eye. I knew at that point that I was in for a 72 hr migraine which will be followed by postdrome ( migraine hangover) which has begun and will continue through tomorrow. Knowing this ahead of time allows me to cancel any apts/dates I have made, I know I can’t drive during those 72hrs so Dan will have to run any errands or drop off/pick up kids. I knew all of this Friday night, which gives me a little bit of an upper hand. It does not however change the course of the migraine it just helps me know what to expect.

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My URL…oops

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I was sharing my new blog with my fellow blogger and super grammar aficionado Mindy when she discovered that I had used an incorrect plural in naming my blog. However to my defense I did create the blog and purchase the domain name at 2:00am. http://www.myfamiliesnewnormal.com No going back now. I could change the name on my blog but the URL had been purchased. But I was able to go back and change the title on my blog to “my family’s new normal” Oops! Oh well! I will always remember the laugh I got out of discovering I had used the wrong plural form of family. And thank you Mindy for catching it!!!

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Rental Property Nightmare

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6/12/15 Saturday: A huge thank you today to my mom and dad, Mike and Mindy Richmond, Stephanie and Jared Jordan. We had the perfect number!!! We got 2 bedrooms and a living room painted.  Just need to do trim and doors in the bedrooms. And the guys tackled an enormous project.  Since the renters did not have trash removal for two years. They burned everything and dumped the ashes and big stuff behind the garage. Unbelievable!! How can people live in such filth. But feeling so grateful for all the help. We couldn’t have made this kind of progress without you. The house really is beginning to look amazing.

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Hit a Wall

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I finally hit a wall last night. It was wonderful having the energy for the first time in a long time. I felt euphoric and thought I could do anything. And I did! It was great! And then the head pain escalated to a full blown, I need to go to the hospital or take my injectable Toradol, kind of head pain. I finally had to call Dan, who was asleep in the living room, to get help. It was a bad one.

So today I was so sad that I had to cancel a day of fun, fellowship, and cleaning with my dear friend Mindy Richmond, who had Rhubarb pie, my favorite. But I stead I went back to bed this morning and slept until 1:30. After that I have really tried to took it very easy the rest of the day, but kids, dinner, kids and now Josiah is in charge because the pain is escalating again. So back to bed I go hoping Dan will be home soon to put the boys to bed!

Such a roller coaster this has been.

Mindy Richmond: Hard lesson in taking things slow, isn’t it! Ever since my MS diagnosis I’ve been learning that. Get better, my friend. Rest and more rest!
Heather Loose Johnson: I prevented a bad one again tonight by listening to my body. Dan walked in before I drifted off to sleep.
Kathy Smith: Den and I continue to pray for you, honey. I’m so sorry you’re going through this.
Heather Loose Johnson: Thank you Kathy and Den.
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ETran and Music Concert

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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.

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