After my last update on my migraines, I went back to my usual once a week migraine. So my 20 day stretch of no migraines was a one-time reprieve. Definitely thankful for it, but it has not repeated {yet}. Not long after that, I saw my neurologist, and I discussed with her the struggle I was having with my migraines returning on day 3. She decided to switch up my medication to see if we could get some better results.
Long story short? It did not go well. You can skip over 2 paragraphs haha.
Basically, she gave me some Nurtec samples to try, and our initial plan was going to be to switch to that as my rescue med. But insurance immediately denied it. So she decided to have me try another triptan {Rizatriptan}, to see if that could eliminate the 3rd day issue altogether, and to only use the Nurtec sample as a backup. In the meantime, she was going to continue appealing insurance. The good news? The Nurtec worked GREAT for that day 3 option! And because of the type of medication it is, I don't have to worry about taking it, even if I have already had a triptan for 2 days. The bad news? The Rizatriptan was awful. Didn't even get rid of my migraine on day 1. Needless to say, it was a rough month, and I was begging to switch back to Sumatriptan, and I told her that if insurance denied Nurtec again, I would just live with the 3rd day issue. {Have you kept up with all the meds? Haha - no need, this is for my own record, really}.
I assumed insurance was going to deny the Nurtec again; it's expensive, and I already take an expensive medication for my Crohn's {which, ironically, is necessitating this migraine medication}. But by God's grace, they approved it! So right now, I am still mainly using Sumatriptan as my rescue med, with the Nurtec as my day 3 backup. I have an appointment with my neurologist in November to discuss the best plan moving forward, to see if I continue as is, or switch fully to Nurtec.
Other than that one-month blip, I feel like I have found a fairly steady rhythm with my migraines. But when people ask if I am feeling better, it's really hard to answer that question. Mostly, the answer is yes. But that comes with a very delicate balance, what I call "the Migraine Dance." I mentioned before how I have to have all these perfect conditions to keep the migraines at bay. From what I eat, to what I smell, to keeping out of the sun. The right amount of sleep, the right temperature, not too much sun, enough water, the right smells. And quite frankly, it's exhausting trying to balance it all. Because if I slip on any one of them, it's all over. And my nice weekly rhythm ends. And it's still so frustrating that I have to work so hard to manage it all like this while still taking a whole separate maintenance medication {Topiramate} that causes a whole other set of side effects. Sigh.
While it's difficult and exhausting, I continue to dance, because there are no other options. Doing the Migraine Dance is the only way to feel better right now. But I am thankful that the dance helps.
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As far as Crohn's, I have had 2 more flares this year {I had 2 prior to my last update}, but thankfully my labs in May were normal again. So while that brings a certain level of comfort, it's concerning to see flares in remission, and I have to just watch them closely. It means I won't be moving to a yearly GI visit anytime soon {and will stick to every 6 months}.
My fatigue has returned over the past few months, so when I see my GI in November, I plan to have him check my B-12 levels. In addition, I need to ask him about my new fun symptom: body aches. I actually mentioned it when I saw him in May, because I started feeling achy earlier this year. Just feeling like my muscles were aching, like when you exercise and feel a little sore, but was just feeling like that pretty much all day, every day. He tested my creatine kinase, but that came back normal. Since then, the body aches have increased, and there are days when my body is really hurting. Many days, I wake up stiff and achy, and it takes a bit for me to kind of shake it away. It doesn't actually go away, but I can usually manage through the day, but then by about 2pm or 3pm, I am really feeling it, really hurting. And I am feeling it more in my muscles and joints now.
The hard part is that I have no idea if it's inflammation from Crohn's, a side effect of Stelara {which it is listed as one}, or a side effect of my migraine medications. So now I am on a quest to figure this new thing out. I'll be honest: I don't fear turning 40 in February for the reasons most people do. My body has already lived the life of a 40 year old, so I fear what my body is going to feel like when I actually turn 40 haha. Blah.
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I follow Phylicia Masonheimer on Instagram, and she recently posted these words in one of her stories:
And it was just what I needed to hear to get my heart re-focused. Because living with a chronic illness that even badgers you in remission can be so draining and discouraging. It takes so much of your energy, physically, yes, but also mentally, emotionally, spiritually. It can so easily consume every part of your life, and you {I} can be tempted to focus so much of that energy inward. I can so easily become self-focused, and the pity party comes to town. It's not to say that the struggle is not valid. But when I take my eyes off Jesus, I quickly lose my way, and it becomes that much harder to bear.
Because He is Jehovah Raphah, my healer. For whatever reason, He has not chosen to bring full healing to my diseases. He has not allowed remission to look the same this time. And while that is hard and sad and frustrating, He is still good, and He has not left me. Physical healing has not yet come, and it may not anytime soon {or even this side of heaven}. But there are countless other ways that the Jehovah Raphah has made Himself known to me...
He has healed my heart of of stone and the deepest longing in my soul. There is spiritual healing in the blood of Jesus that far surpasses my need for physical healing. And while the deepest healing of my heart and soul in salvation through Jesus Christ would be more than enough, I can look back over my life and see how He has brought healing in other tangible ways...in broken relationships and broken plans/dreams. I have even seen physical healing in my health, from my first remission and Tumorthy, to infertility and relief from varying symptoms along the way.
And so I look to Jehovah Raphah, God my healer. And I praise Him for the healing He has already provided, and for the healing that will eventually come. And I ask Him for the strength to continue to dance and endure.
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