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Roller Coaster Weeks of May

Week of May 9th: I was still on prednisone until Wednesday.  But I was exhausted every day.  Gideon ended up staying home with a fever Tuesday through Thursday and we pretty much laid around during that time.  My head pain may have been low, but my body was completely out of energy.  So we sat, watching TV, playing on our electronics, napping a lot, even Gideon.  Head pain actually remained low until Saturday, but finally on Wednesday, I got some energy back and so did Gideon, but was still running a low grade fever so I kept him home one more day.  We had a fun day of going to lunch, Walmart, lots of garage sales and then to Miss Tammy’s (his daycare before I lost my job).  Man was I whipped when I got home though.  Friday started my day with a sore throat and pain into the chest.  I was thinking it was a yeast infection from the prednisone especially because I had it down there and on a place on my stomach…so not fun.  I just felt crappy all day.  I tried to go into town, but only lasted an hour and then back to bed for me.  I woke Saturday with a migraine starting but didn’t let that get me down…at least with the help of Imitrex it didn’t get me down.  So we packed in the car and went to a few garage sales and had lunch out.  By Sunday I was completely exhausted and slept almost all day.  Migraine most of the day when I woke in spurts.  I did rally in the evening to get the kitchen cleaned, the boys to clean their bedrooms and bathrooms and organized the laundry to fold and hang…it was really beginning to pile up.

Week of May 16th: Monday in bed all day with a horrible migraine for which I finally had to take a Toradol shot just to take the edge off.  Tuesday I woke with the migraine, but took Amerge ( a Noratriptan that takes quite a while to take effect but works for a long time) and went back to bed until 1:30pm.  I got up showered and felt like I had some energy back again.  I was supposed to meet a friend for a late lunch/ice cream but that fell through, so I13265911_10154115930606897_534315005628657821_n went and ate at Taco Bell for a late lunch by myself.  I ran a few errands and hit Goodwill for a few amazing finds…Body Glove surf suit for Gideon $8 and it fits perfect, white leather Keds for $4 for me which is what I was looking for and a pair of garden shoes for $4 and I love them, they are bright green and make me happy 🙂 And then went crazy and folded all the laundry, hung up hanging clothes put it all away..and if that wasn’t enough I emptied out my entire closet to make room for all of  my clothes that not only fit but were some amazing garage sale finds and to make room for my new addiction: LulaRoe.

The rest of this week is a mystery to me really.  I woke up on Wednesday with a great deal of energy and very little head pain (1/2).  So I called my friend Mindy and we went to lunch and hung out all afternoon and chatted all day.  Then in the evening the family went to Josiah’s school for a walk-a-thon type thing and I walked 1 1/2 miles.  I was so scared…I knew I would end up with a migraine that night or the next morning, but the mystery is…I didn’t.

So Thursday I woke up feeling ready for the day and spent the entire afternoon with my friend Carrie, hitting garage sales and Meijer towards the end of the day.  Friday I went to Josiah’s field day at school for 3 hours which was so much fun and I am so glad I was able to go and participate in something this year with the schools.

Then went to ready care because a pain in my neck, possibly lymph nodes had been bothering me, he put me on antibiotics and sent me on my way. I slept until 3:30, visited with my parents and then we all headed in to Gideon’s school for his school Carnival. And again I was so pleased and excited that I got to participate in something with the kids for their school.

Little to no head pain all day and into the evening.  I did do a Toradol shot, but that is because my body was aching 🙂  Then my parents took the kids and Dan and I just hung out all weekend, hitting a few garage sales.  Saturday night we hung out with our friends Stephanie and Jared until 1:30 in the morning.  Still no head pain.  I was even wearing my regular glasses without the tint.

Same for Sunday…I did have a bad reaction to food, but other than that another great day.  It’s a mystery!  I was actually having feelings of guilt because I had gone so long without a migraine.  How weird is that?  I was also very confused…was this going to last, was the medicine working, I just didn’t know.

Week of May 23rd: Monday was another great day.  I spent most of the day relaxing at home though just in case.  But it was nice and quiet and had no responsibilities that day and that felt good..no where to go!  Then as I was on FB a notification came up from one of the virtual garage sale sites and I just happened to click on it.  It was a piece of property.  10 acres of land, with great hunting potential.  I contacted the owner and asked if we could take a look at the property.  So after we had all eaten, we headed out 14.5 miles from our house was this beautiful piece of land.  Oh my goodness, we were instantly in love.  Rolling hills, woods, the view, the potential to maybe build some day, photography potential.  So we walked all the way to the back of the property which was quite long.  When we got to the wooded area it was tough to walk because of all the prickers, so Josiah and I chose a different path and we ended up in the swamp.  It took all of my energy to get to the back of the property and then I was digging for extra energy to get back.  We saw 4 deer and a rabbit in our short time there.  The sun was setting and we were in love.  We didn’t really think about how we would pay for the land, just how beautiful it was and the potential it had.

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And then I had no more guilt, I knew the answer to the questions I was asking myself…the13241196_10154132262611897_3871821648081814738_n head pain returned and with a vengeance.  Ugh.  I went to bed with the pain rising and woke with the head pain at a 5.  I took an Imitrex and went back to bed because I had a hair apt later that day and of course I had to make it 🙂  By the time I 13233015_468205046703984_2698938692415491479_ngot home the meds were worn off and I was back to bed and in bed all day Wed and Thursday.  Friday, I woke with the migraine still, but took Amerge because I was done with the pain.  Luckily by 1:30 when I woke up the meds had done their job.  So I went in to town to see the back about financing the property (after chatting with Jennifer our realtor, she told us that there was a possibility of financing and I made some calls and found out that was indeed true).  I got all the information about getting pre approved for the loan and what it would take to get the loan.  20% down…ugh.  If we got the property for $32,000 with realtor fees we would need $7000 to put down.  No idea really how that could happen.  So I put that aside and started driving until I found a garage sale sign which lead me over towards the property.  I decided to go look at it again.  When I got out of the car, I felt this amazing peace.  So I decided to pray about this property and if it was to be in our future or not and to please make it clear 😉  One can always ask!  And wouldn’t you know it, when I left the property, 2 houses down there was a garage sale.  If you know me, or have at the very least read this thread, I love to garage sale.  It must be a sign, right?  🙂  hehe j/k  I won’t disregard it, but I won’t put an offer in based upon that “sign” 🙂  I picked up the kids from school (a treat since they have to ride the bus and walk home) and then picked up pizza.  My parents met us at the house and took the kids off for the weekend.  After they left, Dan and I sat out front and just enjoyed the peace and quiet and listened to the birds and talked about our day without interruption.  And then the guy next door started mowing…inside I go.  Allergies are kicking my butt this year.  So now to spend Memorial Day weekend however it takes us.  But I will gather all the necessary documents needed for the pre approval for sure.

 

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Big Day

6/15/2015 Monday’s are great!  I went to McDonalds (and not in the play room) to relax alone while waiting for a script to be filled. After a crazy and emotional week last week it feels wonderful to be alone and peaceful.

June 15th meme 2

Since I was feeling well all morning I went off to Walmart to do some shopping.  I was doing well but then fatigue hit, so I had to sit in the shoe dept and rest.  Fatigue is a pain in the butt.  Just when I think I am getting ahead, then I am knocked back down.

Then Gideon and I had dentist appointments tonight.  Gideon was really excited about first dental visit and he did awesome.  I was feeling nothing but anxiety about the sounds and pain I would likely feel so I did a Toradol shot in the dentists office.  By the end I was exhausted and ready to go home and to bed.

Tuesday: The following day I spent the day in bed resting and recovering from the Big Day on Monday.  I slept for 14 hours and when I did wake I had bad blurred vision and double vision.

Wednesday: Another bad head pain day.  In bed again all day.  I finally tried Imitrex and the side effects were awful.  Within about 10 minutes of taking the medication my head started to constrict…which sucks when your head already hurts.  Even though there were terrible side effects, at least it reduced the head pain.  But not likely to take it again.

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My Stay at Chelsea, MHNI Inpatient program: Plan v 10.0-14

April 1st: The first full day was really just getting settled in and getting an IV going in order to deliver medications.  I met with doctors to come up with a plan and the nurses started the infusions that night.  I woke up this morning for the first time with no headache in quite some time and it was lovely. However within an hour or so it was all back. But the relief was great.  Medications in the infusion included: DHE, Singular, Trazadone to help me sleep and Klonopin to help with the anxiety.

April 2nd: I met with the doctors and they came up with the first procedure to try….a bilateral greater occipital Marcaine nerve block.  Even though I had a bilateral occipital nerve block done at Sparrow (which didn’t do anything) during my second hospital stay, they wanted to try it again.  The way they did the procedure was much simpler and less painful than the one at Sparrow.

Meds plan: At the same time taking me off the meds that were not working; Keppra, Neurontin, Elavil.  The Trazadone really helped me sleep last night and it feels great to have deep sleep. It’s been awhile.

Around noon I did some extremely basic yoga in a chair but the movements of the head and neck resulted in a terrible migraine.  I also had a great deal of jaw pain today.  I am coming to the end of day two. They have me on a fair amount of medications for the time being.  Just trying various combos.

The IV Saga Begins: When it was time for the infusions (IV meds) the IV line I had in was really painful so they removed it and had the same problem getting a new IV started, 4 pokes by 3 nurses later and the IV was in and meds were given. Quite a traumatic experience because the head pain was so bad and the infusions aren’t pleasant. However once it was all done, I crashed for two hours, and woke up with a much reduced migraine.
So I keep going and keep trying whatever they have.

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April 4th: More fun with the grandparents at Lego day at the library.  Gideon seems to be having so much fun with Grandma and Grandpa.  Josiah is with dad because he is in school and can’t miss just because I am in the hospital.

April 4th Gideon

Rough day today. Headache has peaked. Just praying they find something that will help.

Let’s go State!!! Man I wish goose bumps didn’t hurt my head because that was an awesome Stars spangled Banner 👍 Go Green Proud to be a spartan. Great elite 8 game and great game today. Stay calm and Sparty On. Now Wisconsin need to represent the Big 10 in the championship game.

March 28th sparty

April 5th: Today is Easter and Dan’s 40th birthday.  Dan arrived just in time to Easter Sunday service.   I was looking forward to communion on this Easter Sunday and even invited Dan to join me. However when the service started it became clear that it was a catholic service where we were not allowed to partake but can receive a blessing because we are not Catholic. I was so very disappointed. Time to simply dive into the Bible this  morning. I know Catholics feel very strongly about this but my feeling is that if you believe that Christ is your Lord and Savior and that he died on the cross for you you should never be banned from taking communion. Nowhere in the Bible does Jesus tell you to turn away those who believe in him. And today I felt turned away, I felt not good enough and shamed as they walk around and only give communion to those who attend a Catholic Church. Whose to say they even believe! I don’t mean to offend I will just never understand how the Catholic Church can set themselves apart when the word Catholic means all embracing.

Aside from my rant earlier I wanted to say a very Happy Easter. Christ is Risen. Christ is Risen indeed!! PTL. I also wanted to say a huge Thank You to my mom Sherry Dunne Weaver and dad Bob Weaver for taken such great care of our kids. For taking them to church and for making a special Easter. I am so bummed that I couldn’t put together their Easter basket, dye eggs and hide them for a fun Easter Egg hunt.

April 3rd Gideon

Thank you, thank you thank you. I love you guys and I don’t know how I would be getting through this rough patch on my life. Oh and I love my new pjs. I already put them on!!

April 5th
And a Huge Thank you to my husband who spent the day with me in the hospital going to an Easter service that meant pretty much nothing.  But at least we got to visit.  He has been so wonderful through all of this.  It is a huge adjustment with me not working and me staying with my mom a lot.  But we are making it through somehow!

April 6th: Here is a good explanation of the procedure I am having done today. And Dr Sapor remains the lead Dr. here at the clinic. I will go I. At about 1:00. Tomorrow I will be having another lumbar puncture. Bring on the prayers my prayer warriors!!

Nerve Blocks : They did a C2, C3, C4 and C5 bilateral facet block.

IV Saga continues: My veins suck and they won’t do a pic line due to high risks with the meds I am on. I have now been poked 14 times that have resulted in 3 iv lines that have all failed and one blood draw. So I currently have no IV and need one for my procedure at 1:00. And to top it off my head is not doing well. Oh and I can’t eat or drink anything so no comfort eating either. On a bright note the day is not likely to get much worse

If anyone is out shopping and finds Cadberry Cream eggs (original) I will pay you back for them. They are my absolute favorite candy on the earth and luckily for me they don’t have coconut oil 😉

April 7th: Heading in for another lumbar puncture very soon. A bit nervous after the last one lead to a spinal headache. They are doing it again because the Hayes Green Beach ER doctor didn’t take pressures which are important to determine whether or not they will have to do another blood patch.

Lumbar puncture/Spinal tap went well: NOT.  I now have another spinal headache. They are awful but at least laying down helps but the underlying headache that got me here is there whether I am standing or sitting.  In other words…it sucks big time!!!!!!!!!!!!!!!!!!

Unfortunately the ice I need to help with swelling from the facet blocks are increases head pain.  But I need the ice to keep the swelling down.  Ugh.

IV Saga Continues: they had to start anther IV today and it took 1 nurse 4 pokes and another 3 to get the line going.  Plus the pain from the first IV has left my right arm very weak and quite painful.

April 8th: Today is a day that I am truly having difficulty praying. Crying comes freely though. So I am needing to lean on my prayer warriors. The spinal tap yesterday resulted in a spinal headache and will now need a blood patch. I am terrified based on my last experience which was horrendous. Rough day but at least the spinal headache is positional which means I get some relief when laying completely flat.

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The blood patch is done and I am back in my room. Not nearly as traumatic as the I had done at Hayes Green Beach. The prayers were heard my friends. It resolved the spinal headache immediately which is expected but the migraine has been exacerbated in the process. So hopefully a day of complete rest and we can get back to resolving this damn migraine. Be gone, I say, Be gone!

Hospital war wounds. And my Mickey Mouse shirt got me through it all today!! Well that and God and all of your prayers of course.

There isn’t much to do in a hospital room that doesn’t have wifi that I can’t watch Netflix no my iPad.  So I have been watching MSU basketball (see above) and The Voice.  Come on let’s go Joshua Davis (from Traverse City, MI).

April 9th: Nothing like a tornado warning and being sent to the hospital basement to help my most severe headache of my stay.  I took a blanket and laid on the floor until we had to come back up stairs. There were so many people I just wanted to bolt!

Long day!  They did an X-ray of the neck just to be sure they weren’t missing anything.  The technician was a bitch and was completely unaware that I was about to puke even though I kept telling her that was going to puke.  My legs were giving out and when she grabbed my head she grabbed it at the temples and that resulted in much more pain and nausea.  She just went about her business and that lead to more dizziness and nausea. As far as today goes, it is one of the worst days yet.

I was given a CD with relaxation/meditation…I wasn’t sure at first, but as I listened more I felt comfortable.  Dr. Lake talked me through it the whole way which prevented my mind from wandering.  In fact I don’t think I ever made it through the entire CD before I fell asleep.  So the relaxation part worked very well.

Meds update: The doctors put me back on Prozac and continue to try various abortive medications to try and knock out the migraine, but with the spinal headache is now making it almost impossible to differentiate between the migraine, the headache and the spinal headache

But it was a great day in the end because my mom came to visit, so I didn’t have to be alone through one of the hardest days. Yay for moms who know when their daughters just need them.

April 10th: Today is another day of severe pain that make me wonder if it will ever go away. Meeting with dr now.

They think they put to much blood in during the blood patch so the headache went from not enough fluid to too much fluid. It sounds like they can correct it with meds instead of more surgery. They are also going to give me a day of pain meds. Pretty sure the desperation is becoming more evident every day. I have no idea how you survived for 6 months. All I want to do is sleep.

I’m now on 11 weeks straight of migraine and head pain.  I am at one of the best head/pain clinics in the US and they have no real answers and no resolution. In fact they are resorting to the one thing they only use as a last resort, narcotics. Today I don’t even care about the consequences I just want relief.

It is truly amazing what a shot of Nubain (an analgesic) will do for a person who had been in constant pain for so long. This is not a long term play just a day a relief and I’ll take it. I even took a shower and have friends coming to visit. Things are looking a little bit up today 😉April 10th me again

Visitors: Kristen and Steve and their kiddos came to visit right at the perfect time. It was so great to see them. They have been such a huge support system so it was nice to finally see them in person. The meds kicked in and Kristen and I were actually ableto visit.

After they left I had already walked to the front of the hospital so I decided to do some shopping for the kiddos and for myself. I realized that it had been about 10 weeks since I stepped foot in a store. So the little gift shop, while overpriced, was fun to do some shopping.

April 10th me

April 11th: Depression is quite severe today.

April 9th

This has been me almost the entire day. I sat for about 10 minutes for lunch and another 10 for a late dinner. Head pain is unbelievable, depression is quite severe after learning that the plan for discharge is on Monday. The nausea from the Nubain they have me on for 24hrs was wonderful to have the break but the fall was hard and I slept most of the day. Cried a fair amount. I don’t tell this for sympathy really. Just giving the update So if they really send me home on Monday with no improvement I will head back to my moms and figure out where we go next. I still can’t believe how debilitating a migraine can be and how little people really can understand the chronic nature of it unless they have actually had a migraine that lasts for weeks at a time or gets them daily for days on end. So it has been good to meet a few people that know my pain and how unbelievably disabling they really are. 11 weeks of missing out on everything. 11 weeks passing me by holidays, birthdays, swim meets, Gideon learning to ride his bike, Josiah mastering the wake board. Church, home group, friends, shopping, working, my family in one place enjoying a meal together, seeing my family. And the list goes on. I have been hospitalized for a total of 4 weeks so far and they have no idea how to control this damn migraine. I don’t know where we will go from here which is why the depression has grasped ahold quite tightly.

All the love I got following this post today:

Susie Wilkey Harloff: Sending love your way. I get migraines, but they are knocked out quickly with a Midrin. I can’t even begin to imagine having one for as long as you have. Hang in there.
Dawn Tomlin: It all is sucky! And depressed is normal for what you’re dealing with. I know you are strong and God is your strength. It’s ok to show the dark side of things. No answers and uncertainties would make me depressed too. You will pull through this you will get back to all those things!! I believe there is a way and meds or no meds that headache has got to leave!!! In Jesus name!!! Amen!!!
Nikki Gruesbeck: praying for you Heather! this must be so very hard! Lean hard on Jesus, He is your strength and when we trust in Him no pain is ever wasted. Lord we know that YOU are the GREAT Physician and ALL things are Possible for you. We entrust our sister Heather into your capable hands and ask that you lift her spirit, encourage her as only You can, give her relief from this migraine and impart wisdom to the doctors who are trying to find the cause of this. I pray also that you cover her sweet boys and hubby in your peace and give her back the time ‘the locust have eaten’ because we KNOW that YOU are ABLE! It is in your MIGHTY and POWERFUL name we ask- Amen.
Mindy Richmond: Oh Heather I don’t even know what to say anymore. My heart breaks when I read about all you are missing with your kids and family as I missed a lot when I was in my bad place too. But God restored all that for me in wonderful ways and I know he’ll do that for you too. We are still praying and God is still fighting.
Carrie McHugh David: Heather I feel your pain and do know exactly how you are feeling. I don’t understand why they would release you with no progress or treatment plan. Non migraines I don’t feel understand how disabling these headaches can be. I have missed many of life’s events over the past 7 years. I was really praying that they would have a solution for you. I am 9 days in a row with some type of headache. Very frustrating I know. Please let me know if you need to talk. I will pm you my phone number. Keep the faith and try not to let this get you down.
Kari Alvaro: Oh Heather, I don’t know your pain and I can’t even begin to understand the deep sadness that results from “missing out.” Please know that I am praying for you in groans that only the Holy Spirit can interpret as I continue to ask the Lord of all creation to intervene. We miss you

April 11th

April 12th: Along with all of the positive and encouraging words this morning🙏 I woke up to this sweat guy. Pain level and fatigue continue. Now they are thinking another blood patch possibly. But we won’t be sure until Monday.

April 12th

A much needed note from my mom today: Boys enjoyed church. Gideon’s room sandbox was refilled with rice with some colored rice mixed in. Great idea! Might be idea for downstairs. Kids were loving it. Different feel than sand.  Blood patch does seem reasonable. Take one day at time.  Bob and Josiah off to church to unload and get tables set for books. We will go later. Josiah needed break from Gideon he said. Now that Gideon can keep up with him on bike!!! We will pay Josiah to work today. Did you want us to donate the little bike. No way will Gideon ride it again. Give it to little boy!! Gideon says “I love you””

April 19th

April 13th: Heading into get an MRI of my neck and then at 4:00 I go in for another blood patch. Besides that I sleep a lot. I finally figured out that laying completely flat on my stomach with my head turned to the right I could get some relief.  The blood patch was so bad, but in a very different way than the first one.  I had searing pain between the eyes that has now shifted my head pain to my left side.

And after all of that they are just going to discharge me.  Ugh!  After today’s tests and surgery I will be discharged tomorrow and heading back to my moms house. Life is far from normal yet but I am trying to rely on Jesus. Not all that successfully but at least I am trying. Something has got to work right?

My throat really started to hurt today and I had an awful taste in my mouth, combined with cotton mouth.  Just one more thing.

April 14th: Discharge Day

Settled back in at my moms for the time being. I have a follow up apt on Thursday to meet with a few more drs.  No answers really in fact they started my meeting this morning with “we have no idea what is causing or how to stop this headache but we’re not going to give up.”  So a day at a time is all I can do.  Oh and I left with a very sore throat and lots of gunk on my tongue.  Nurse had no idea what it was, so they just sent me home without figuring out what was wrong.

IV Saga continued throughout my entire stay:  I ended up with 31 needle pokes, lots and lots, of bruising and an arm that is very, very week and that I can hardly touch with anything at all, even a simple brush of my fingers across the arm.

Medications Tried During my 14 day stay:

  1. DHE (dihydroergotamine mesylate)
  2. Lyrica (pregabalin)
  3. Norflex (Orphenadrine)
  4. Prozac (fluoxetine)
  5. Trazaodone
  6. Klonopin (Clonazepam)
  7. Prilosec (Ompeprazole)
  8. Toradol (Ketorolac)
  9. Midrin (Isometheptene cap)
  10. Zanaflex (Tizanidined)
  11. Lioresal (Baclofen)
  12. Flexeril (Cyclobenzaprine)
  13. Skelaxin (Metaxalone)
  14. Robaxin (Methocarbamol)
  15. Zofran (Ondansetrol)
  16. Nubain (analgesic)
  17. Imitrex (Sumatriptan)
  18. Magnesium

List of Meds that I went home on:

  1. Lyrica (preventative)
  2. Prozac
  3. Trazadone (for sleep)
  4. Klonopine (for anxiety)
  5. Prilosec
  6. Toradol (as an abortive): IM injections (fun)
  7. Imitrex (as an abortive)

 

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Fatigue

Update: I will be heading to Chelsea for the MHNI inpatient program on Monday or Tuesday. Insurance will approve as long as it is 15 days between hospitalizations. So I get to see Dan and Josiah for the weekend and go in on Mon/Tues.

Today I was extremely fatigued. Blood pressure was low again midday and I woke with my head hurting bad today which usually doesn’t come on strong until midday. So today I spent mostly in bed. I had been getting to the point where I was up and about (not really doing much but at least awake) more than I was in bed but not today. Today I was simply fatigued with the same bad headache that is my constant companion. Hopefully I can rally for a bit because Dan and Josiah are on their way.

Merry Dunne Blades Oh Heather, it doesn’t seem fair that such a sweet person as you has to suffer so.
Heather Loose Johnson Someday hopefully my experience will help someone in return

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Settled in at my Parents

All settled in at my mom and Bobs for the week. Headache is manageable most of the time and for that I am so very thankful. I am extremely fatigued so the combination of the headache that makes me want to rest and the utter fatigue walking from one room to another are going to prove a long road to recovery. It sounds like I should team up with Melinda Richmond to beat the fatigue, get enough rest and drink enough water so my blood pressure will stop plummeting. I continue to hover around 90/55 or so. Gotta keep drinking water, getting rest and somehow start to get some exercise (in time). But for now I continue to rest.

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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