0

I’m Back and I’m feeling great…temporarily that is!

This post is just to get me back to my blog.  It has been entirely too long and there is so much to catch up on.  I tend to do things gung ho for a period of time and then burn out and that is exactly what happened with my blog.  I am really hoping to get back to it, especially during this time of reprieve.

Just a quick migraine recap…I went to Mayo and they put me on Neurontin stepping me up to 2400mg/day.  I successfully made that step up and had my first 8 day window with no migraine and then it came back full force.  I was also prescribed prednisone for 2 months starting at 80mg/day for a week and stepping down 10mg per week.  I started the prednisone on June 8th and have been on it for 22 days.  And let me tell you I FEEL FANTASTIC!!!  I feel like I could do anything, go anywhere, be anyone, etc.  I even went Jet skiing for the first time which by the way brought on a major migraine regardless of all the meds I am on…so I still have to be careful.

But the one thing I am so very much enjoying is reconnecting with my husband and 2 kids.  They have missed me and I have missed them and it wasn’t until I started the prednisone that it truly sunk in that I have been completely absent from their lives for the past year and a half.  Yes, I made veiled attempts to be with them in the same room, but there was always this anxiety that a sound they would make would trigger a migraine, so I could never be fully present with them.  And now I am able to snuggle, spend time with and not be the snarky mom I have been for the past year.  Yes I still get frustrated with my 5 and 10 year old of course, but I don’t feel like I am going to strangle their necks because they dropped a marble on the floor.

I just feel happy!  I don’t think you can truly understand happiness and joy unless you have had it taken away and for that I can be thankful for the trials and tribulations I have been through over the course of the past year and a half.

I don’t look forward to the end of the prednisone trial (2 months), but at the same time I really don’t think about it much because I am truly able to live in the moment and feel happiness and relief.

I have lots to catch you up on: end of year school activities I got to partake in, vacation, dealing with migraine and kids on summer break fears and so much more.  So keep an eye out for more to come!  Sorry for the hiatus but it is good to be back!!!

0

Mother’s Day Weekend

It was such a blessing to spend so much time with my family but it was a very surreal weekend this Mother’s Day Weekend. It was as if I got to step out of my sluggish body and head pain ridden ornery self and got to be this happy, fun LulaRoe legging wearing, master garage saling woman this weekend. It was magical.

Friday night: I love that Gideon is still young enough for back rubs and snuggles. The best way to spend quality mother/son time for me…the hugs are healing and he loves his back rubbed…it just happens that he falls asleep very quickly when I do rub his back, so I just held him.  He will not be small enough much longer to do this.

Saturday we all hung out for the morning and then went in to town to garage sale and man did we hit a ton of sales (see Garage Sale Addiction Post for more on that).  Gideon ended up with 2 of the best things; a 4 piece suit which he loved and had to put on right away when we got home and a game with many interesting additions to the box.   As soon as he put on his suit he had me taking video of him doing dance moves…very funny!  And then my mom asked if I got any pictures of him in his new suit…good thinking mom.  No I hadn’t, but I was still up for a few pictures and he was so excited to have his pictures taken that I definitely took the opportunity to do so!

Sunday morning @ 7:30 I was woken up very quietly to ask help buttoning up Gideon’s pants, then shirt, then vest of his 4 piece suit.  After he was all dressed he climbed into bed and played on his ipad, making me a new season 😉

I came out to the living room around 10:00 and Gideon was right there asking to play one of his new games from a garage sale.  As far as the game goes, all the pieces were there but 1, so that is pretty good for a used kids game…but it was all the extra stuff that was in the box that was so strange:IMG_8589[1]

  • a little gun
  • instructions for a roku
  • a used pencil top erasure
  • AA battery
  • AAA battery
  • paper clip
  • 2 fake fingernails
  • paddle and ball
  • wrapper for a cough drop
  • 2 rubber bands
  • string
  • a piece of wood
  • metal tool of some sort

After playing the game for a little while I asked Gideon if he wanted me to cut his hair because he had been asking for a short hair cut, so I got the clippers out, got him into play clothes, and cut his hair. He was definitely due!  And I was so glad I felt good enough to cut it!

He said he was going to wear to wear his suit today and he did, but he had to have a bow tie, so after his hair cut I took him to my photo props and found him a bow tie.  Then I sent him to the shower and he got his suit and bow tie back on.  It was Mother’s Day after all.  He made me want to dress up a bit too 😉  Then we had to take pictures with his new hair cut and with the bow tie…it was so wonderful to feel well enough to be able to do so.  Josiah didn’t want a hair cut or his picture taken!   Growing up!

Josiah shows me his love is ways that can’t often be photographed and he is getting old enough that he isn’t always up for pictures for fun. He prays for me every night, he gives hugs and is always concerned about me. I have been blessed with two very living children. What more could a mother ask for 😘💕

It was a wonderful weekend.  We went garage saling, shopping and out to dinner.  But even better I got to be a mom, a photographer, a hair cutter, a mom, a photographer, a garage saler and a mom and it was delightful!

And then we were all tuckered out from a fun long weekend of Migraine free mom!

IMG_8702[1]

Happy Mother’s Day to me and to my mom!

13147839_10154092787571897_9041026138763520412_o

 

 

0

Spring Break 2016

Spring Break 2016 was a roller coaster for sure!  The first day was a great day with my boys.  and for that I am so thankful.  12924526_10154006279196897_6370616670055768135_n

First stop: Hangin out at Walmart and having Subway for lunch.  The boys were so excited that they got to get new silly putty and got a new back pack for my trip to Mayo Clinic…feeling pretty good today.  Lunch was really good too…we just sat chatting and enjoying each others company.

Then we made a quick stop at Hayes Green Beach Hospital to pick up my records for the last 14 months.  Then to CVS to pick up my prescriptions and then we were off to Lansing.

12919878_10154006577856897_8309008874565947101_nWe made a quick stop to drop off paperwork to get my records from my allergist for Mayo.  and then we headed over to Sparrow hospital to get my records from them for hospitalizations and ER visits.  This visit took a little longer since they were going to copy my records r12920471_10154006779886897_3690398605269991810_night then for me.  So the boys and I went to the deli counter and ordered smoothies and cookies.

On our way home, to our surprise, we spotted a Garage Sale sign, so of course we had to stop 😉  First Sale of the year and it was a beautiful day and I felt great.  Gideon got a Gideon Bible for free, so he was excited and both boys got to watch a little boy fly a kite and then let go accidentally where the handle got caught in the tree.  The kite was flying beautifully!  As soon as one of the guys climbed the tree to get the kite, they cut the line and it flew across the road.  Quite exciting garage sale!  I got a bingo seat in case I decide to pick up Bingo in the near future 😉 Two blankets and two doilies in case I decide to pick up photography in the near future.  A suet holder for the birds and a men’s travel bag for a friend’s friend 🙂  All for $5 And this was all in the first day.  Good thing we got a lot in because the days to come were not going to be much fun.

By that night the migraine began and I was in bed Sat through Tues morning.  Gideon went to Grandma’s for a couple of days and Josiah got to hang out here for the night Sunday night and just vedge.

Josiah got to invite his friend James over on Monday to spend the night…so they kept each other entertained during the day Monday while I nursed my migraine.  Pretty sure they played Minecraft all day!  But I never really did hear much from them most of the day.  So nice that Josiah and his friends are getting older and are able to keep entertained without parent involvement (someday I will regret this statement I am sure).

Tuesday night was Dan’s Birthday celebration.  We met my parents and Gideon at one of our new favorite buffets: Hibachi Grill and Sushi Buffet.  Awesome food for the price.  I finally surprised Dan with a birthday present.  I had planned on getting them for him last year for the big 40, but I was in the hospital, so I made up for it this year with a pair of Heely’s for adults…yep they really make them…and yep they are really hard to ride.  I also got him a plant stand…kind of boring, but he has really come to love his plants 🙂  We had a great night though.  My parents then joined us back at the house for a couple of days.

12936479_10154017295921897_144023479701555891_nBig deal for Gideon tonight: he lost his first tooth…actually I pulled it, but it finally came out.  He was so excited!  The tooth is in the empty prescription bottle that is so proudly holds.

Wednesday: I woke up feeling pretty good, thank goodness.  It was the only day that I had made plans that I could truly keep them.  We met up with Gideon’s friend Douglas and his brother and mom at McDonalds for lunch and then we went to the free movie at Eaton Theatres “Rise of the Guardians”.

12928223_10154018548976897_8256685531609057777_n

After the movie we came home and did some house cleaning.  In the meantime I got a hold of my friend Dawn and she and her boys came over for the evening for dinner and to have birthday cake to celebrate both her son Brady’s birthday and Dan’s birthday (we were too stuffed the night before to eat ice cream cake).  And then I proceeded to help Dawn with her taxes which finally scrambled my brain.  A long, fun and exhausting day.  But I guess it was good that we got it all in because the next three days I was pretty much down for the count.

My mom and dad stayed through Thursday morning and got all of our laundry done, dishes, and vacuuming done as well as got both of the boys rooms cleaned up.  And the most fun for the boys was getting the burn pile burned.  They used the fire pit which was apparently much more fun 🙂 After they got all the cleaning done they sat down with the boys for a fun game of Blockus.  I finally woke up at the same time they were getting ready to hit the road.  So glad they were here to spend the morning with them because I was back in bed for the rest of the day.  From 2-5pm and again from 6:30-8:30pm.

Friday: my sleep schedule was pretty much the same, meaning almost all day.  The boys played downstairs, watched YouTube, played Minecraft together and made the day pass.  Luckily dad brought pizza for dinner which was when I finally decided to take Imitrex…and then I was awake until 4 am working on my paper work for Mayo Clinic.

Saturday: We all just hung out and slept until about 2:00 pm.  We had gotten a couple of inches of snow but the kids didn’t want anything to do with it…they are so over winter and so am I.  Then Josiah got invited for a sleep over which he was super excited about.  Dan, Gideon and I went to Meijer for groceries for the next few weeks since I could be gone as long as 2 weeks.  Then off to Applebee’s because it is still Dan’s birthday week and that was his choice 🙂  Much easier to go shopping and to dinner with one child!  Then we hit the Dollar Tree and Goodwill.  I finally hit a wall of fatigue where I could no longer move really.  I found a seat and could barely get back up to go to the car.  On the bright side, the reason I was so fatigued was because I had walked all three stores and normally I take carts.  It felt good but so terrible at the same time.

Once we got Gideon in bed I finally finished all of my records (duplicating and organizing records from HGB, Sparrow, MHNI and Allergist) for both Mayo clinic and myself.  I wanted to have the same exact copy.  I then wrapped up the last of my timeline info, medication changes and headache journal updates and I am completely done with any and all paperwork I need for Mayo Clinic…phew!  That was a big project!

I would imagine that tomorrow, Sunday, will be a low key day.  I think we made the best of Spring Break this year.  I didn’t know if I would even be able to do anything, so everything that we got to do was a bonus.  Plus the boys were just glad to have late bed times and the freedom of electronics all week!

0

Vacation with Migraine

DSC_6408

I took a nice long break from my blog while I was on vacation in Florida.  Mostly because the beginning of the vacation was dealing with head pain and migraines and fatigue that I never got on my computer and the second half of the vacation was spent keeping my little man, Gideon, comfortable because he became sick on Tuesday (the day I finally got medicine that would allow me to have more energy and less head pain, prednisone).  All in all we did make lots and lots of fun memories and have so many pictures of course that I am sure we will look back on this vacation with many happy memories.

Then we got home late Sunday night got the car unloaded, unwound and went to bed.  Monday I spent the entire day in the ER with Gideon…luckily his fever broke and he is doing much better, but he has been home with me all week.  Now it is looking like both boys will be home tomorrow and maybe Friday for a snow day.  Guess I am going to have to wait until next week to truly unwind.

The one thing I have to say about vacation with migraine is not as I expected.  I think I was expecting to go on vacation and everything would be great…a vacation from migraine because I said so…but it was not so.  So “My Family’s New Normal” keeps taking shape.  Everything was so much better when I fought to get a script for prednisone though…I was finally able to have the vacation from migraine and life 🙂  It was also very well timed so that I could take care of Gideon as well.

In the days to come I will write a few posts about my vacation and post a few pics!  But I am looking forward to having things wind down here at home.  Unfortunately with a winter storm comes more head pain.  Migraine started as soon as I awoke this morning.  Might be a long rest of the week and weekend!

That’s all for now folks!

0

The reality of Life with Chronic_______

I have had 2 1/2 days without migraine pain since January 1st. So for 13 out of the past 15 days, this is what I look like…


I have showered 3 times in those 2 weeks, brushed my teeth a few time (brushing hair or teeth causes more pain than I am willing to allow on top of the migraine pain).  I change my underwear if I remember and never wear a bra.   This is my reality!!!  And the reality for many others who suffer from Chronic Illness.

But today is our 16th Wedding Anniversary and I was having nothing to do with it, I am so over the pain. So I called my doctor and asked if I could take the migraine cocktail at home even though I have used the meds as much as I should this week. He gave me the go ahead. After about a half an hour the pain is much reduced and I am determined to enjoy our night.

Me after the migraine cocktail….


And so now we can go celebrate. Plus all my boys brought me home a new plant. It should be a good evening!!


So off to Carrabbas we go!!

0

Rental Property Nightmare

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.

0

Pictures in May…with my real Camera

This first group of pictures was from May 14th through May 19th…the nerve block was amazing!!!!  It was so much fun to get my camera back out.  These were the first pictures I took since January that weren’t on my iPhone.

The rest of the pictures from May were taken in Midland at my mom’s.  These pics were from May 23rd the day after I had the Radio-frequency nerve root ablation and I was taking Toradol shots every 12 hours to keep all pain at bay.  So once again I was able to get my camera out for a few minutes.

0

MHNI Visit #3

My mom and I are on our way to down to MHNI for a full day of apts. Today’s visit will also determine if I will be able to continue on Short term disability and whether or not my job will any longer be held for me. So much in limbo right now. My last day of FMLA is May 25th and STD lasts until Aug 6th. I’m not even sure what to pray for at this point. But they will do another nerve block today which will hopefully give me a week of relief but when it wears off the migraines and headaches come back in full.

Today I met with Dr. Lake (pain Psychologist), Dr. Da Silva (Neurologist) and Andrea (physical therapist.  The main things that came from this were that they titrated Norflex daily down to stop the medication due to side effects.  I was still also increasing Lyrica (but side effects from Lyrica were also starting to take effect as the dose increases, but I am still willing to give it a try). Dr. Da Silva also recommended that I meet with the General Pain Division, Dr. Shamis to see if there might be more options for other nerve blocks to try.  Dr. Da Silva also did another nerve block in my temples and doubled the steroid.  I am very much looking forward to a few days of pain relief.

Starting to lose hope that the doctors will ever really figure out what is going on and how to help solve it.

image

Medical Notes from the visit to MHNI

Headaches: Some improvement continuing, but has also had some very severe headaches typically related to extensive talking with a friend that triggered a three day incapacitating headache, exertion in combination with a head-down position when she took a walk with her family and watched her kids picking up rocks and head down position when working at the computer.

A supraortbital aricular temporal block from Dr. Da Silva on 4/22/15 gave her a clear week of relief wtih a headache level dropping to a mild level for extended periods of time.  The severe headache triggered teh the walk and looking down occurred exactly one week after that block.  She will have a repeat block today by Dr. Da Silva, followed by a possible Radio-frequency Nerve Root Ablation.

She reports an increase in stress concerning her ability to return to work successfully, and other financial concerns that are unrelated to work including trying to sell a rental house that they are in the process of repairing after it had been vandalized by their tenants.  Her FMLA expires on May 25th.  Her employer (Neogen) has sent her a note explaining that they will not be legally required to maintain her job for her, but may be willing to do so when they receive appropriate information from us.  She logged in the appropriate form with Medical Records today and I put her name up for discussion with multidisciplinary treatment team for our next meeting on Tuesday, May 19.  I am also sending her a copy of this note which outlines her progress and behavioral treatment.

As she explained the ergonomics of the job to me,  it involves a great deal of laboratory work, making media, working with big dishes of media, and working over a safety hood that requires her to lean forward and extend her arms out in front of her which put some strain on her neck and back musculature.  We discussed trying to keep her self centered over her hips, but I also talked with our physical therapist about these issues and how that might be addressed in physical therapy.  She is scheduled to see our physical therapist, Andre, shortly after this apt today.

Also, she has continued to have some cognitive issues with word finding and word substitution.  Her job requires significant Cognitive demands.  In my judgement we are making progress but not in a position where she will effectively make a return to work before May 25th.  However, this is a treatment team decision.  She will see Dr. Da Silva, her primary neurologist with our group later this afternoon.

Anxiety and depression remain improved: however some return of depression after the last weekend with severe headache after she spent three hours talking with her friend.

She reports excellent adherence with relaxation techniques, and states they are quite helpful with the moderate or low-end severe headaches although it is very difficult to relax when the headache reaches an intense or incapacitating level.

I introduced her to biofeedback training. Bitemporal EMG was 2.25 mcV at baseline which is normal range.  However, when she would talk, it would rise and remain about 7 mcV, requiring some sustained attention to bring it back to a lower level.  With visual feedback she was able to drop this to 1.5 mcV and sustain it at that level, at times dropping a little below that, which is our target range.  I underscored the importance of continued attention to jaw relaxation, particularly while she is doing other activities, and returning to her baseline after talking with some sustained attention.  The temporalis may play a key role in some of the vice-like pain over the ears extending to the top of her head.  She also reports pain at times in the TMJ area, that may even extend into the mandible.

Right cervical trapezius EMG was elevated to 3.5 mcV range at baseline.  With instructions to sit with good back support and imagine that she was suspended from a cord with extension of her spinal column aligning her neck through the top of her head, she immediately dropped to below 1.5 mcV.  We discussed the importance of ergonomics and how she keeps her head from being in a down position, using a music stand to hold papers that she may need to work from, consideration of getting a monitor at eye level rather than hunching over to look at her laptop, not sitting on the couch when working on her computer at home, consideration of a wireless keyboard that she could hold on her lap while looking at the screen at eye level.  We also discussed the importance of returning to good posture positions and jaw relaxation as a baseline condition.

I will see her again at her next medical return visit.  She stated the session was quite helpful to her.

Dr. Lake

0

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.

img_7169

 

0

A 15 year old Hoya Plant

May 5thThis Hoya has such beautiful flowers. We have had this plant for 16 years. We got this plant right around the time we started dating and it just keeps going. Just like our marriage. God gave me a best friend and an amazing husband. These past 15 weeks have been hard on us all but Dan has stepped up in so many ways. And now he even does everything without pouting j/k. But the beginning was rough when he couldn’t understand. But he gets it now. No way I could get through this without him and my parents ( Sherry Dunne Weaver and Bob Weaver). They have done so much I can’t even begin to explain but they took Gideon and I in for almost 6 weeks because I was non functional. I am back in that boat again but we are trying teach Josiah to make dinner or lunch and to take care of Gideon if dad has to be gone and i can’t help. Many others have helped out too and I thank you for your continued support. This isn’t over yet unfortunately but with the support I have we will get through this. Thank you is barely enough but from my heart I thank you.

Sandi Davidson: Thinking of you Heather. You have had a rough road lately. Hopefully it will get better soon.
Dawn Tomlin: Words can’t express my support and love. You all are adapting. God is your stronghold. It’s amazing to be apart of your lives. Through sickness and health!! We are in this together. You are NOT alone!!
Heather Loose Johnson: Love you too friend. We sure have been through a lot together haven’t we.
Merry Dunne Blades: Such a Beautiful & Unique flower just like your relationship with Dan and your Wonderful Family.
Sherry Dunne Weaver: Amazing how little blessings like this flower shine through even in the darkest times.
Heather Loose Johnson: It is funny how taking a picture of these amazing little flowers to post on FB, that I got all that out of a flowering plant.
Anita M. Bremmer: Beautiful plant! We wish you well, Heather!
Today I went to see my family physician, Dr. Wulff, to follow up on blood tests that showed a high cholesteral level and low B12.  He gave me some paperwork to help reduce cholesteral naturally (but I never did follow it 😛 ).  And then he gave me a B12 shot.  He set me up on a 90 blood work for cholesteral to see if it went down naturally.