I Am Thankful

During this week before Thanksgiving, there is so much to be thankful for. My daughter, her husband, and my sweet little granddaughter; my son and his fiancé; my husband; my home; my family and so much more. I am thankful for the good days and for support during bad days. I am thankful for friends, my pets, and most certainly I am thankful for God.

I have been having some good days and some bad days, back to the roller coaster. I am thankful they are not all bad days though. It was a rough fall, though now I am very much looking forward to having my family with me to celebrate Thanksgiving.

I heard lately that autumn is a time to remind us that it is okay for things to die in order for new life to begin. This thought stuck with me. It is a natural order for death to happen and new life to spring forward. I see the dead leaves that can be so beautiful and then the life they allow in the spring. The fires out west I hope will bring new life. It is so sad though isn’t it? The death of people is so hard but if nobody died could we exist today? I know it took a very long time for me to grieve my dad’s death and in many ways I still am, but there is so much death and loss that we don’t even think about. Does all death bring forth life? Should it?

What about the loss of a job? Is that a death? I certainly grieved (and still am) the loss of my job. Does the loss of socialization count? How about the ability to be completely independent? These are all losses that I have been working on with a professional. I am so thankful for the new life that has emerged. I have been able to make new friends through a Bible Study group I am now able to attend and I have made new friends at a knitting social group also. Yes, there is new life if one only looks for it.

What are you thankful for?

Infusions, Ajovy, or Both?

Never have I thought that I would request someone to put needles into my body; I have, and am thankful. After four days of infusions, I am feeling better. As I had noted earlier, I was running pain levels of 9-10 (on a 10 point scale) before the infusions. My pain has come down to levels of 6-8 on most days since the infusions. Although it takes a few days to recover from full day infusion sessions (having medication administered via IV throughout a six hour period), it is well worth the decrease in pain. Just think what could happen with another week of infusions? That is not on the agenda though, the doctors do not recommend that much medication in a short period of time unless inpatient.

While I haven’t been back to my knitting group (which is still a possibility this week), I have gotten back to Bible Study and getting out of the house a little bit. I was very sad to have missed a bridal expo with my future daughter-in-law, but it was too soon after the infusion treatment (it is very exciting to have an upcoming wedding for my baby boy). What I am wondering now is how I will tell if this new medication (Ajovy) is helping, if it is the infusions helping, or if together they are helping. The length of time it takes to decipher the effects of medication is long and requires patience. I’m working on the patience, still.

In other news, I stopped at the mall today for the first time since last year. I had a full hour to spend before an appointment in Grand Rapids. I was able to pick up a couple presents and ran into a friend there. It was so nice to see her. I don’t get to see many friends anymore; different life paths, and my pain doesn’t let me get out and about too often.

I have gotten a great deal of my Christmas shopping done lately. I still need to group and wrap them though. I am hoping to put some of the presents under the tree when we put it up Thanksgiving weekend. It helps me to work on things slowly in case I have more bad days and cannot get anything done later. It will be a very special Christmas this year with my sweet little granddaughter. She makes me so happy.

 

 

Trying a New Path

Most of you know that Bob (my husband) had been taking me to Ann Arbor for my neurological checkups and treatments. When they said that they were running out of options for me, they suggested Cleveland Clinic. I was in a Head Pain program there (where I was the only one with NDPH, all others had migraines) for three weeks. I was then referred to the Michigan Institute for Neurological Disorders in Farmington Hills. They had a couple of ideas that did not pan out for me and thus referred me to a headache specialist (which turned out to be more of a team of specialists) in Grand Rapids through Spectrum. That is the appointment that I waited a year for.

Now that I have been there twice I have had my third round of Botox, it failed, I have been given a new medication that required I stop driving (although it didn’t help so I stopped it and can drive now), had a day of infusions and I have just been given a newly approved drug called Ajovy. It was amazing, I went in for a recheck after the infusion. Since my pain level didn’t drop, the team met real quick to discuss my next steps. How often does that happen? It wasn’t scheduled for them to meet while I was there. Anyway, that same day a prescription was called in to a nearby pharmacy, I ran out to get it, came back, the shots were given to me, and it is free for a year!

This new drug is only given every three months and the only side effect is minor site irritations. It is not 39 shots like Botox, but only three shots that go in the back of the arm, top of the thigh, or stomach. The down side is that it is three shots given in the back of the arm, top of the thigh, or stomach (lol). However, three shots every three months is definitely doable. I am so hopeful for this drug to work. I am also going in for a three-day infusion (outpatient) series this coming Wednesday-Friday. If this process does not break my high pain cycle, we will talk about another hospital stay. I feel good about my new team of doctors.

The one-day infusion treatment seemed to bring my pain level down from nines and tens to seven and eights now. I haven’t had a 10 since the infusion. I am hoping the three-day infusion treatment will bring the pain down to fives and sixes. That would be a level that I haven’t had in months. I thank God and all of you who are supporting me through thoughts and prayers. I plan to attend my Bible Study on Tuesday and may even be able to go back to my social knitting group next week Thursday (shout out to Threadbender Yarn Shop)! Stay tuned…

I’m Back!

Here I am writing after more than a year. Wow, right? After being at Cleveland Clinic I was doing pretty well. My head pain was mostly tolerable and I became active again. I could get out for walks, started knitting, crocheting, and began going to a weekly knitting group and a weekly Bible Study. I felt almost like a normal person again. Then in the fall the pain started to slowly increase. I slowly started to decrease my activities. I kept up my walking until the later part of spring. After walking every day (in rain, snow, wind, heat, etc.), I started to skip a day here and there due to increased pain levels; and slowly I am down to one – two days a week. Over the last two weeks I’ve only walked once (with my sweet granddaughter, Maelee). I have definitely taken a u-turn along the way.

It’s been a rough summer and even rougher fall. I am having pain levels of 9-10 for several consecutive days. I cannot seem to break this pain cycle. I even had to miss my family’s Halloween party, including seeing my sweet Maelee dressed up for her first Halloween. Emergency room visits are way too expensive, especially since our insurance does not deem my head pain to be an emergency. Ugh! I have been so very sad and frustrated lately. Thinking about all that I am missing. I know, don’t think, right? That’s what I do when I cannot tolerate doing anything else, I sit in the quiet and think about all that I could be doing if it weren’t for this head pain. I will watch Netflix with the volume so low that I am learning to read lips. But really, there has been so much loss since this all began.

This summer I had to turn down a dream. I was offered a job at the college to instruct a class on how to teach mathematics. I would be teaching future teachers how to teach mathematics! I cried for a long time after I had to turn that down. I seem to cry a lot lately, but I try to put on my happy face around others. It doesn’t always work. I have a very close friend who lost her husband recently. I would have loved to be there for her. She is going through so much that I cannot even imagine, and I am not able to go over there and offer help or comfort. I am just able to drive again tomorrow (in time to drive myself to another doctor appointment). I was restricted while trying a new medicine. It didn’t work.

Wow, this is such a downer! Good news! There is a new drug that came out for migraines. Even though I do not have a migraine, the doctor wants to try it just in case it may work on my disease. I am part of a support group for NDPH and there are several people there that have tried this drug already (although only for a couple of months – as long as it has been available). It seems to be about a 50-50 chance of getting some relief. No one that tried it has reported that the pain is gone or at a pain level below three. I am also hearing rumors that there may be another drug possibility; again it will be meant for migraine sufferers, but just maybe? My doctor appointment tomorrow is to discuss the results of yesterday’s infusion session and make a plan for future treatment. Please pray that we make a plan resulting in some pain relief. I don’t expect miracles (but again, maybe?) however pain levels below seven would be tolerable.

I know that I am often posting about my misery and head pain. Being part of a support groups has shown me just how little research and focus is on this specific disease. All head pain research is focused on migraines. I am glad there is progress and people dedicated to helping those with migraines, I would just like a little focus on some of the more rare diseases also.

Grandbaby! I cannot believe how fast she is growing! Already five months old and she is standing by herself, okay she is holding on to furniture but still!!! She is such a sweet little doll. She sits up by herself, loves to read books and eat them. Alright she eats anything she can shove into her mouth. She is also such a happy baby. She almost never fusses or cries. So many smiles!

On that happy note, I will end. (Is that a little Yoda-like?)