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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.

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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.

 

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Nerve Block Relief to Debilitating head pain

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Saturday April 25th: Still feeling very functional today from the nerve block.  Four days now and they said it could last up to a week. But since I had a rough night last night I laid low today, so I stayed in bed just to prevent the head pain from escalating.

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Sunday April 26th: another functional day.  We even went to Sam’s club to with friends and eat lunch.  Gideon’s favorite place to eat.  It was so nice to get out of the house and do something with friends…it had been so long.  Gideon was whipped on our way home:

 

I think Gideon was also glad to be home as well.  He loved being at Grandma’s but there really no place like home in your own bed.

Monday April 27th: My first day home alone and again very low head pain.  I attempted a couple of mundane tasks today; laundry and balancing the check book, but it wasn’t long before my head pain increased.  But a functional day none the less.

Tuesday April 28th: And another functional, low head pain…this sure has been wonderful.  Today I made my first attempt at doing taxes and then I made dinner for the first time in 14 weeks.  Pain never went above a 3!!  Good day!  And here is a random picture of my medicine basket.  Half of them are ones that I have tried and the other half are ones that I am currently taking:

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Wednesday April 29th: I have been so fortunate with the nerve block actually lasting for this long.  I woke with a very low head pain.  I spent the day organizing files and then worked on taxes.  I was doing a fair amount of bending over with the file organization and that lead to a head pain spike but only to a 3.  I believe that stress is also adding to the head pain: money, taxes, becoming functional again, the rental house, a law suit, selling the house, oh yah and we decided to get the old house resided to boot.  We are working on getting our rental ready to sell and by we I mean Dan. We would to get the house sided and would like 2 more estimates. Does anyone know a reliable crew that could do an estimate?

In addition to all April 29thof this stuff that I have going on with my head…our renters left us high and dry with a house that was a disaster.  So in the middle of this Dan has been trying to get over there as much as he can to fix things and what not.  And I have begun compiling a small claim
s law suit against the renters and we have decided to sell the house…but it will take quite some time to get it market ready.  Oh yah not to mention what was going on at work, short term disability and all the paperwork that had to be continuously filled out.

Thursday April 30th: I still got to wake up with hardly any head pain at all which was wonderful.  Most of the day the pain remained at bay and I felt great.

I actually made lunch for myself today.  I made ham and cheese roll ups with a little ranch. A favorite in our house really. Anything on a tortilla works for me and then some days I just eat cereal if my headache is bad.

When Dan and the kids got home we all went for a walk down the road.  Which I vastly overestimated the distance that I could go.  I was almost in an asthma attack and then the head pain spiked really bad and I was completely down and in bed for the rest of the night.  But we got a couple of lovely pictures from our awesome walk!

April 30th 2

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Facebook conversation with my Migraine friend Carrie’s mom Ruthanne:

Ruthanne Manger Ovenhouse:
How are you doing Heather ?
Heather Loose Johnson: When I don’t exert any energy I seem to be functional. As soon as I do things like putting away clothes and going for a walk the headache goes from manageable to severe quickly. Other than that I am enjoying my family time. I have a spray that I can use on my temples that knocks my headache down instantly for temporary relief.  How is Carrie?
Ruthanne Manger Ovenhouse:  Glad you are having some progress, however slow – I know you must still be so frustrated! She should be released tomorrow am. Nerve block has given her some relief – May last a week, a month or a year. I’m praying for a year
Heather Loose Johnson: Yes praying for the longer the better.

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Really Bad Day

Today is one of the bad days. They suck. I stay in my room. Don’t feel like eating and just lay there wishing this would all just go away already knowing that they have not figured out the cause which makes it extremely difficult to treat.

Mindy Richmond : Sorry babe. Really hate that this is happening to you and wishing I could make it all go away. Praying still and sending virtual hugs your wa
Shanon SmithSo sorry to hear this! I hope they figure it out soon!
John Silverstone: Still praying and hoping they find something soon.
Merry Dunne Blades: I would love to kick someone in the butt, but not sure who. Thank you so much for the beautiful story about the rescued horse going to his rescuers Wedding. That made my day. Wish there was something that would make yours. Love, Hugs, & Prayers.
Dianne Clone: Love & prayers dear friend
Shannon Rogers: So sorry sweetheart. You are such a trooper. Prayers still going up for you…
Heather Loose Johnson: Thank you all for the prayers they carried me through the day. I was also visited by a retired sweet Pastor. I was brought to tears by him praying over and for me that it reminded me that on those days I can’t seem to turn to God because of grief that I know others have been going to God on my behalf. And for that I am ever so grateful.
Carrie McHugh David: I feel your pain.
Kathy Smith: Prayers for you, my friend. So sorry you have to go through this.
Fay Johnson: So sorry you have to go through this, I hope they find something soon. Your in our prayer.

It is comments like these that made the really bad days a little bit better, knowing that so  many were praying for me and thinking about me.

At least during the days where I can’t leave my room, Login is there to entertain Gideon…and Grandma and Grandpa are loving on him and taking care of him.  And I know that Josiah and Dan are making their way through.

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Time Outside and Time with my Boy

Playing Ice cream Play doh with Gideon!  I hadn’t realized how much I missed him until I got to cuddle him up and see all that he had been doing while I had been in the hospital.

Grandma found the perfect 2 wheeler at a garage sale and Dan was determined to get Gideon riding, knowing that he was smart enough and had the coordination to do it.  This all took place while I was in the hospital 😦  Dan sent me a video right away of some of his first rides.  I guess Gideon gives all the credit to Josiah because Josiah just told him to get on the bike and ride.  But the best part was getting out of the house!!  It felt so great just to be outside.  But I had no energy and couldn’t really walk anywhere

 

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Getting ready to move in with my parents

Starting to gather my things to make the trek to Midland to stay with my mom and Bob. I am in no shape to stay alone and Dan had to get back to work on Monday. So Gideon and I are heading to Midland. I have a feeling that the rehabilitation road will be a long one. I walked from one end of my house to the other (and we do not have a large house) and I was so fatigued that I slept for 3 hours. The Toradol injections and meds have helped keep the headache at a manageable level until today when it started to climb a bit but not horrible. Just needed to lay down in a dark quiet place with rice bags and a heating pad and all is well. So any of my Midland friends if you are out and about I should be there tomorrow some time.

March 19th

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Reaching out to Fellow Migraine Sufferers

One more night at the hospital. Though they have done all they can for me, I had a tough night last night and again this morning both points when the medicine had worn off. I haven’t talked with Neurology yet
today but my thoughts are that the meds are acting as a band aid once again and they haven’t found something to actually resolve the headache. I am not sure where I will go from here except home tomorrow.

Heather Loose Johnson: Ruthanne Ovenhouse could I get your contact info? I know your daughter is a serious sufferer of debilitating headaches. Has anyone else out there had success at clinics with chronic headaches like Mayo or Cleveland or U of M. I don’t think my journey is over with this headache and while the extra day here is good comfort wise I don’t think there is anything more they can do.
Ruthanne Ovenhouse: They have a pain specialist scheduled to meet with me tomorrow to talk with me about injections .  You just never know. The neurologist was afraid they probably wouldn’t work because all of my pain is in the front and top of my head but also thought it was worth a try.  Oh I have been praying they could help you because I haven’t wanted to share with you all of Carrie’s disappointments on this journey of over 6 years. She does seem to be having more good days but she deals with another debilitating issue also. Why don’t you pm me your phone # and I will give it to her. That way you can talk or text. You can be sure I will continue to pray for relief for you.

Conversation with family Robin and Rick Wood:

Robin Wood: Heather you really should ask about injection at the base of your like my son Rick had. Took a couple of days before it worked. He had a headache for over six months. Has not had another.
Heather Loose Johnson: Rickandmegan Wood who did you see for your headache and what kind of headache were they?
Rick Wood: They figured mine was a nerve in my neck somewhere but they weren’t sure exactly where was they sent me to a pain specialist but since I AM on blood thinners they wanted to try a different approach so she gave me like 7 injections in the back of my neck and skull about 3 days to a week after the injections and all the sudden I woke up and it was gone haven’t had one sense they tried a bunch of medications before that nothing worked and it was a Henry Ford Dr I will have to get you the name a neurologist.  By the way it was the worst six months of my life hope your headaches go away soon Heather Loose Johnson: They have a pain specialist scheduled to meet with me tomorrow to talk with me about injections smile emoticon. You just never know. The neurologist was afraid they probably wouldn’t work because all of my pain is in the front and top of my head but also thought it was worth a try.
Rick Wood:  That’s exactly where mine were so they so they wanted to do the nerve block they were just going to block all those nerves going through your neck but they didn’t they ended up giving me some kind of cortisone and something else and my whole head face and everything was numb for about 6 hours and after that the headache came back like I said for about 3 days to a week and then they were just gone
Heather Loose Johnson: Here’s hoping and praying Rick!!!
Rick Wood: I know exactly how you feel.  Mine were constant from the minute I woke up does a minute I want to sleep all I want to do is lay around or something over my head and try to sleep
Heather Loose Johnson: Sounds about right. I’ve been in bed for 4 weeks straight and was in bed for much of the 3 weeks prior on and off. I wonder if we have a genetic predisposition for this type of shitty headache.
Rick Wood:  I can imagine it was. I am at 48 days with 3 pain free days.

 

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Home again, Home again

I’m going home!!! Luckily my mom and Bob are there to take help take care of me and my boys.

Utterly exhausted. It turns out that only walking back and forth to the bathroom for 6 days leaves you quite weak. I made 2 trips to the bedroom and 1 to the kitchen and I am short of breath feel like I need a nap. Only I just woke up from a 3 hour nap an hour ago. Guess I am going to have to ease into home life a little slower. They told me that for every hour of bed rest it would take two hours to recover. Head is feeling ok still but I can tell meds are wearing off and I can’t take another until tomorrow night. I’m good with that because it is the means by which I will prevent another rebound headache. Everything is so bright at home though so until the sun sets I will be sporting lovely sunglasses:). It’s pretty fashionable anyway. No change on the unexplained blue fang marks so that’s good. Overall glad to be home and it is soooo great to see the kids and snuggle with my Gideon.

feb 20th

Thank you to those of you who have provided meals to our family this week. What a blessing our church family and our friends and family have been. By the way who made the taco lasagna. It is awesome!!