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S’mores hand Delivered by my Kids

May 1st 2

Last week I had the nerve block done at the trigger point or nerves that are possibly causing the severe migraines and it gave me wonderful relief for about 7 1/2 days. Don’t get me wrong the headache has never left me in the 15 weeks since it all started but it was just at a level that I could mentally and physically handle hence the relief. It was so wonderful to feel free and functional and able to do even small tasks. It really was great. I was able to spend time with my family, eat out, balance my checkbook, worked on my taxes, took walks, and I was even able to make dinner.

The doctor told me that the steroids that they use in the injection would probably last about a week so I kept waiting for the headache to come and it finally did after I went for the walk yesterday. But I was so hoping that when I woke up today I would feel better And that the headache wasn’t really back at a much higher level of pain but I was wrong. I’ve pretty much been down all day nonfunctional in bed resting so that maybe there’s a chance that when I wake up tomorrow it will be a little better.

There are so many things that trigger my headaches or at least increase the level of the headache because the headache is always there. Things like talking for long periods of time with someone or putting my chin to my chest when I’m trying to pick up stuff off the floor or sneezing or coughing or overexerting myself like going for a long walk, and any thing cold. Which is why I just stayed in bed today to give my body a day of rest and like I said earlier I’m really hoping that I will wake up tomorrow and the headache will be at a lower level of pain.

On the bright side the nerve block is often used as a diagnostic tool and the fact that my headache May 1stwas low level and I was functional for that whole week is great news it’s a bummer it didn’t last longer obviously but I think
they’re on the right track and will just have to wait and see when I go back to the doctor on May 12th.

I didn’t feel well at all today and stayed in bed and rested with a pain level of 4 all day.  I did use the Ethyl chloride spray in order to have dinner with the family.  Then went back to bed.

The family decided to do a bon fire, but I was not feeling up to going outside , so my kiddos brought me in a s’more because they know how much I love them:)  And it was yummy!

 

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Heading Home

Gideon and I are on our way home after 6 weeks being gone. Looking forward to my own bed for sure but i am going to miss my nice dark room and all the help that my mom and dad have given me. I am so grateful. Gideon is going to miss riding his bike and going for long bike rides with papa. He is also going to miss playing with the ice cream playdoh set and playing games with grandma. He has had so much fun with his grandparents. He is also going to miss his cousin Login Loose and massages and movies and wrestling. I too am going to miss Login and the massages that he gave me when my headaches were at their worst and gave me such relief. So while we are excited to go home we will miss our family in Midland.

I started the morning out with very little head pain.  However with the drive home, picking up Josiah from school and doing garage saling I was done for the day.  Head pain spiked to a 4 quickly.  So I took a Toradol shot, did the spray and went right to bed.  Still lots of jaw pain and my forearm is still hurting.  But I am HOME and I am so excited to see my boys, see Dan and am very excited to sleep in my own bed.

April 25th boys 2

April 25th boys

 

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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 SilverstoneAt least it sound like there’s light at the end of the tunnel. Still Praying
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MHNI visit #1 following Chelsea

On our way back to Ann Arbor for follow up apts. three of them back to back. My back is going to be my biggest challenge, well that and the ever present migraine. Luckily the migraine has been much more manageable the past couple of days but its presence still makes concentration difficult. Weather looks good for most of our trip though so that is a blessing.

Dr. Lake, the pain psychologist:  It was his voice on the relaxation CD that helped get me through some tough times.  I really enjoyed visiting with him again.  I feel like I can truly speak freely and tell him about what is going on in my life…the good and the bad.  I also got to try a little bit of biofeedback to see what it was all about.

Andrea, the physical therapist:  She did some hands on stuff and discovered that a major trigger point for me is in my temple region.  She prescribed Ethyl Chloride spray to help relieve the pain for a brief period.  She also helped me with doing stairs since my back was still in pretty bad shape after back to back Blood Patches.

Dr. Arnaldo DaSilva, neurologist, head pain specialty: On this visit I just met with Gail, the PA and decided to keep all of my meds the same since I had just gotten out of the hospital 2 days ago.  She also thought I had thrush in my mouth, so she prescribed an antifungal in case I needed it.

Ethyl Chloride Spray

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So apparently when you use Biofreeze to sooth post IV arm pain it is not a good idea to put a hot rice bag on afterwards. It was several hours and the Biofreeze didn’t do much. Oops. Off to ice it now!  The red did finally go away but the pain remained.  Nothing could touch my entire forearm on the top…it was pretty awful.

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