Sunday, July 9, 2017

Migraines, camels and pain, oh my!

One week later and I still have the bruise left in my inner arm by the iv medicines for my migraine last Saturday night. It got *so bad*, I could not wait this one out. It was traumatizing by having two so close together which were three days and three nights long. When last week's migraine came, the pain escalated fast, and by 10pm Robert was driving me to the hospital, with me feeling like there were daggers in each eye.

We didn't get home until 5:30 in the morning. What an ordeal. It took two hours before I got the medicines, and the migraine pain kept escalating. It was a busy night at the ER, and I was not a priority.

Then yesterday, barely one week later, I felt another one coming on. My friend from childhood was here for Shabbat, and I was so happy to be with her and her sons, but yet a headache crept in. I decided to kill it as best as I could, I'd take all the medicines that I'm not supposed to take. But what are my options, really? Knowing it could last three more days is just too much. I cannot just wait it out. So when it was just barely coming on, yet I knew for sure what was happening, I took many pills. Advils, Tylenols, and later Optalgins and more Advils. I did not want to wind up back in the hospital, and could not bear to wait it out for another Gd-knows-how-many days. I am nobody's hero by holding myself hostage to pain. The pills knocked it back enough that I got to sleep (throwing in an anti-anxiety medication, also, because I couldn't sleep, because of RLS (restless leg syndrome; a nerve disorder), and I don't have meds for that specifically, but a friend and fellow NF survivor told me he takes anti-anxiety pills and it helps his RLS.
Like that run-on-sentence? I don't feel like fixing it. :)

Sleep (or more precisely, lack thereof) is still a big problem, and I'm sure sleep deprivation may trigger migraines. I'm working on it from many angles.

I did go camel-back riding, though! Like I mentioned before, my childhood friend from NY is visiting, and I took them to the camel farm nearby. Last time I got up on a camel was before the surgery that "fixed" my right hip, and the following day I was in terrible pain. I was hoping, since this time is after that hip got "fixed", I'd be better off. Well, the ride was fun, but near the end (an hour long camel ride) my hip started screaming at me. When you are on a camel, there is nowhere to adjust your position. This one I had to ride out. I tried to move my leg to a different position, but I thought I'd fall off! That would have been bad. So yeah, Friday after that adventure I was in pretty heavy pain, but I rode it out. At least it was having fun that caused it, and not something more sinister! But yeah, I think camel rides are out for me. It was fun, but hurts too much. My hips just are not sewn up that way.

Ya'akov making a friend
My view of the camels... I was last in line!

A cool thing is coming up on Wednesday... I've been invited to give a talk about my NF story at a pharmaceutical company in Tel Aviv! I've never spoken publicly about my NF story, believe it or not. This drug company, AtoxBio is working on a drug to quickly stop NF in it's tracks (if you go to the site, click on "pipeline" to read about their research for the NF drug). They invited me as an Israeli survivor of NF to give encouragement to their researchers, so they can see how devastating NF can be, and how worthwhile their work is. I am going to tell my story. I'm nervous! But excited. This company is going to hopefully put a drug out there which would prevent all the damage I went through, and possibly prevent sepsis (which is what causes organ failure, which I had). The drug is in phase three, which is the last phase it needs before marketing. I'm sure I'll have more to write about after the talk! It's going to be Skyped to their other office in the US, also. I am curious about so much with this, I don't know a whole lot about it. I'll write what I can about it afterward!

I'm still taking Homeopathy, seeing the Osteopath, and seeking out other opinions about the ongoing issue of the infected gland I have near my NF wound. I saw a specialist about it last week, and he is sending me to yet another specialist (I'm the hot potato here again). The next one I can only see in September because we are going to the US, so let's hope I won't have to majorly deal with it while I'm away.

That's it for now. Mainly ongoing treatments, therapies, migraines, and pain, but my mood has been good, thank Gd. I feel I am finally getting out of the horrible depression I had after my mother passed away, and then also my dear friend Sabrina, may their memories be blessed. There is heatwave after heatwave here in the desert, and I am finally able to start seeing the sun. I just beg for long-term relief from the migraines, God. That's what I need desperately.

No comments :

Post a Comment