Category Archives: Nubain

0

New Migraine

|

March 26th I am guessing that this drastic change in barometric pressure could be why I have been down for two days. Such terrible pain and meds are not working. A 0.1 change can result in migraine. This shows a change of 0.66.  And the pain is new.  It feels like someone has their hand at the base of my skull and their fingers are like tentacles of pain radiating up and over my head to my forehead.  The majority of the pain begins in my neck on my left side, at the top of my head where it is sensitive to the touch and has stabbing pains and behind my left eye.

March 28th: Today is my 5th day in row down with the same migraine. Meds so far haven’t helped. This seems to be different than previous migraines/head pain. I am hearing from others that they are also suffering right now. I just wish the weather would stabilize. I have no other explanation than that. At some point I am going to have to go to the ER but it is so damn inconvenient. So if anyone has no plans or kids to take care of who wants to hang out at Sparrow, let me know!

March 29th: Finally decided to go in to the ER. My speech was getting increasingly more slurred and I was having trouble finding words words. 6 days straight does not do a body good when it comes to migraine.

I have to admit that the service at Sparrow ER was pretty amazing, fast and very smooth.  I got there and got my bracelet.  I immediately went to the next person to tell them why I was there, and was called directly to give a more detailed account of what was going on and at that point I met with an ER physician where they came up with a plan.  From there I went on to get my blood drawn and urine sample.  Before I could even finish filling out the sticker I was taken to a room.  Within minutes a nurse was there getting an IV started.  It was nuts!  And awesome!  They tried the migraine cocktail (Toradol, Benedryl and Zofran) which didn’t do anything.  Then they tried Haldol and pepsid.  Haldol is a drug that I need to put on my “never take this drug again” list.  I felt like I wanted to crawl out of my skin and then passed out.  Still no relief.  After a consultation with a hospitalist to determine whether to admit me or try a Nubain shot and they went with Nubain and it worked like it always works.  I am heading home with a prednisone pack (which I plan on saving for a trip where I could really use it.  In fact I have felt pretty good since that ER visit and really didn’t need the prednisone pack.

1:30am Home again home again!! I feel so much better. Hoping that I wake feeling refreshed a little bit anyway. The boys did great. He took them home and put them to bed at regular bed time. Then when I called he woke the boys long enough to get to the car and went right back to sleep. Kids are so great like that!! Thanks for the prayers.

 

Advertisement
0

New Migraine leads to ER Visit

|

I will look back at this and one day laugh…in fact all I can do is laugh about it now.  I have already written this post, but had completely forgotten about it.  I spent about a half an hour putting it together….and it was already put together.  Ugh Oh well!  Maybe some of you didn’t see the first post about the New Migraine 😛

The new migraine involves the left side of my neck where there is a great deal of muscle spasming.  On the back of my neck, it feels like a hand is being placed at the base of my skull and the fingers are tenticles of pressure that engulf my head before finding their target behind my left eye where it feels like a dagger.  It may sound dramatic, but this is the pain I felt for 6 days and on the 6th day my classic migraine behind my right eye joined the party.

March 26th: I am guessing that this drastic change in barometric pressure could be why I have been 6898_10153978454741897_7694716924008176830_n (1)down for two days. Such terrible pain and meds are not working. A 0.1 change can result in migraine. This shows a change of 0.66.

March 27th: Parent Fail due to Migraine #126: The kids have no idea it is Easter and that is ok because I was never able to get to the store to get any Easter basket stuff. I feel so terribly guilty, but luckily I was blessed with children who simply go with the flow and are not very aware of time. Maybe next week will be better and I can get to the store and hit the clearance sales so we can celebrate next Saturday or Sunday. I figure as long as we go over the real Easter Story that is the main point and it doesn’t matter when we do that. But the guilt will remain. And back to bed I go. This round of migraines/headaches has been really awful and I even have a new one that I have not experienced before. And to top it off it does not seem to be responding the medications that I have on hand. But I have taken all the meds in combo and am hoping for some lowered pain time to spend with my family later on today.

March 28th: Today is my 5th day in row down with the same migraine. Meds so far haven’t helped. This seems to be different than previous migraines/head pain. I am hearing from others that they are also suffering right now. I just wish the weather would stabilize. I have no other map_tileexplanation than that. At some point I am going to have to go to the ER but it is so damn inconvenient. So if anyone has no plans or kids to take care of who wants to hang out at Sparrow, let me know?

March 29th: I finally decided to go to the ER. My speech was getting increasingly more slurred forgetting words. 6 days straight does not do a body good when it comes to migraine.

Their new triage system is quite nice and efficient.  I never sat down from the moment I walked through the metal detector until I was in a room getting ready to be hooked up to an IV.  I got my wrist band, talked to the first person to tell briefly why I was there, then off to explain further and make sure all of my info and medications were up to date in their system.  In that same room I met with a triage Dr. where she came up with a plan which was put into the system.  I then went to get my blood drawn and give a urine sample.  I didn’t even have time to put my name on the sticker and they were whisking me to my room where a nurse came in quickly and started the IV.  My veins don’t like to cooperate, but today the woman drawing my blood got it on first try and the woman putting the IV in only took two tries.

The first round of meds is the migraine cocktail and for me that is generally; Toradol, Benedryl and Zofran.  It didn’t work of course (I had already tried that at home, but they have to try).  Then they came back with Haldol (which made me want to crawl out of my skin, it was terrible) and Pepcid.  It finally knocked me out but the migraine remained ever so present when I awoke.  They were debating on admitting me at that point, but after a consultation from the hospitalist on call they decided to try Nubain and guess what it worked.  I has yet to fail me in these terrible, long term migraine cycles.  They let me lay for quite a while and once the narcotic effects wore off the migraine was gone.

Dan had taken the kids home earlier in the evening because each one of these medicine cycles takes time to take effect.  So I called him at 1:00 am and gathered up the kids and came and picked me up.  I love that my kids are so malleable…they just go with the flow no matter the situation (well most of the time anyway.

0

4 days on 2days off 8 days on 3 days off 4 days and counting on

|

The month of January:

Jan. 1-4: Non functional with mind stabbing pain over my right eye…pain of the worst kind .

Jan. 5-6: Baseline head pain but functional enough to run a few errands

Jan. 7-15: Three days of tension migraine (at debilitating levels), 2 days classic migraine, 3 days both tension and classic migraine (very debilitating): finally did a migraine cocktail which happened to finally break the migraine cycle.

Jan. 16-18: Lots of energy, very low head pain, got a lot done (at least on my blog and on FB).

Jan. 18-23: Classic migraine (the mind numbing, stabbing pain over my right eye).  Finally went to the ER for a shot of Nubain and finally have some relief.

So if you do the math in the last 23 days I have had 5 days of mild head pain when I was functioning.  It takes a lot out of a person having so many days of head pain in a month.  Migraines sure are a bitch.  This most current migraine has kept me in my cave for four days.  I didn’t even see anyone for two full days. Thankfully I stocked my Crave Cave because it was the only food and water I had. I felt like I didn’t exist and I was in extreme pain.  This helps show a little bit how I felt. No shower for days. No brushing teeth for days. Pain for days.  Over and over and over again.   I go to MHNI on Feb. 2nd and plan on really pushing them for something…even if it means being admitted to the hospital again.

Pretty sure I could use this for a mug shot…orange shirt and everything…but my hair actually looks better that it really was 😉 ha!  Which reminds me I need to make an appointment to get my hair and nails done soon!!

Sleep Schedule

Even though this doesn’t have much to do with this post, it is something that I have been wanted to write about.  This is very different from other Migraine sufferers I know, but I am also on several medications that keep me pretty sedated: Klonopin, Trazadone, Robaxon, and Prozac.  But the debilitation is just as real…I am just sleeping for most of the time.  I feel so bad for other sufferers that I know that cannot sleep during their migraines.

Sleep schedule during a migraine:  To bed at 12:30am, wake at 1:30 pm, nap from 2:30-4:30 pm, nap from 5:30-7:00 pm and back in bed by 12:30.

Sleep during Migraine Hangover: Usually pretty exhausted but will often be awake most of the day, just sitting on the couch watching TV.

Sleep schedule during baseline or low head pain day: To bed around 2:30-3:00, wake anywhere from 7:30 am to noon depending on the day, but I often get up and get going to get things done.  I rarely nap on these days and stay up late again.  Someday when I have only had 4 hours of sleep I will take an afternoon nap, but my energy level is so high that I can’t really sleep, so I just keep on going.

image

0

1 year anniversary of the first day of my everlasting migraine/headache

|

1/23/16 It only seems fitting that I am back in the ER exactly one year from the day the migraine began. One year of so much craziness, so many Dr visits, so many missed events, so many….

But also I am thankful for new friends, thankful tha I now have an  understanding of Chronic illness and living with chronic illness. I am also very thankful for health insurance because even though out of pocket I pay $845 a month and max out of pocket of $3000 at least I didn’t have to pay the hospital/Doctor bills that added up to over $300,000 last year.  I am so thankful for the family and friends who have supported my family and myself over the past year.

On my way to the ER after battling a 112hr migraine.  I just couldn’t handle the pain anymore and decided it was time to go in.

Waiting for the doctor at the ER.  It was one of the best ER visits that I have had in regards to a migraine.  She looked back at my chart and saw that Nubain was an effective narcotic for when the migraine cycle couldn’t be broken with Toradol, Benedryl and Robaxon.  I also told her that starting an IV was extremely difficult and if I could avoid it, that would be great.

Thankfully she really listened to me and did not insist on starting an IV or taking blood.  Instead she offered me a Nubain shot and when that took effect I was able to go home feeling so much better.  This is a picture of me after the shot of Nubain, kind of a goofy grin, but that is exactly how I was feeling 🙂

Me waiting for my family because they didn’t get any of my texts.  And although I am slightly annoyed I am so thankful for the relief.

1

My Real Birthday was not as much fun!

|

I am going to pretend that my birthday was on Sunday when I was headache free for the most part and feeling great. I just had a wonderful day. Not so much today so I have officially decided that my birthday was June 28. But thank you for all the birthday wishes today I’ll except them and pretend that they are belated ha ha. And back to bed I go.

And the day just gets better! But at least I got Taco Bell for my birthday lunch. As you will see we are in the hospital for Gideon. He broke both bones in his left arm climbing a fence. They are bringing in a Sparrow Orthopedic to set his arm.

And now I am getting checked in for some meds for my head pain. Even with my Toradol I am in pain. The adrenaline that got me here has worn off completely as well as the drugs.

They were able to set Gideon’s arm and will be in a full arm cast for 4 weeks at least and a short arm cast for a few more. Poor kid 😦

All ready to go home but we have to get pizza first of course.

0

MHNI Apt #2

|

I called into the dr yesterday with the worsening vision and jaw pain and some word loss. So I met with my neurologist today. After going over all my meds and making a few adjustments we discussed what over the past 3 months had given me any relief. My only response was the narcotic Nubain that they allowed me to take for some relief. It took the pain completely away for about 7 hours.

And then talked about the trigger point that the physical therapist found and sprayed Ethyl Chloride on and the headache went completely away for a short time but reduced for several hours.

So he decided to do a nerve block in those trigger points the headache went completely away as long as the lidocaine wore off it started to get worse but has eased up again this evening.

But my friends and family, we might be getting closer to root cause behind the headache and it is a nerve issue. Next step is to monitor how the steroids are doing and do another nerve block at my temples/trigger points in a month. If that works they will discuss and attempt to kill the nerve to hopefully get full or at least some relief. They would just have to get the right nerve. But it would resolve the jaw pain blurred vision and headache as I understand it. This might be to much to believe in but for today I have hope. And for that, today I am grateful.

Meds: He is slowly ‘ up the dose of Lyrica to see if I can get more of a full effect.  Stopped the Norflex as an abortive and made it into a preventative every day medication.and added Zanaflex as an abortive.  Also recommended B12 shots.

Comments from FB:

Shanon Smith: Great news. Will continue to pray for you!
Michelle Govitz: Great news! Still praying each day
Joy DeSimpelaere: Prayers they find it soon!
Shannen Rowe Dubose: Excellent news.
Kristen Long: That is good news Heather. Glad to hear you had some relief and forward progress is being made
Natara Loose: Are they 100% sure it’s not MS? Since it runs in our family? I take it you already got an MRI and CT SCAN and spinal fluid analysis? Just looking out for you cuz
Dawn Tomlin: This is a hopeful break through! All in Gods timing!! I will continue to pray for the smallest things and relief!!!
Heather Loose Johnson: Yep they did all those tests plus like 50 others it felt like. I let them know I had MS in my history. There were some spots on my MRI but they were pretty certain the spots were caused by the headache/migraine. I will have a follow up MRI in 4 months to be sure because there was a slight chance it was autoimmune. So they are keeping an eye on that.
Heather Loose Johnson: Two of the spinal taps lead to spinal headaches both times that lead to a total of 3 blood patches. Sucky. But I will bring it up again. The clinic treating me had not yet received the scans. Good reminder I need to call the hospital to get a move on the medical records. My mind pretty much sucks.
John Silverstone:  At least it sound like there’s light at the end of the tunnel. Still Praying
0

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.

IMG_4328

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.

1796446_10152857926397264_9118060956555019173_n

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)