So I continue to be a little complex and complicated lol--I went to do the injections (there is a loading dose so I am supposed to do 2 at once this month and then once a month afterwards) and there was only one shot in the box the pharmacy gave me. I had to call multiple pharmacies and kill time at Petco and Target waiting for the right pharmacy to get it--I'm assuming they don't keep more than one stocked because it's still a name brand prescription and that means it's likely a LOT more expensive. Long story short, she only gave me one and has never seen two dispensed at once so that's why she was confused, so I get to go back tomorrow. Insurance won't cover it unless you've already tried other medications, so thankfully other meds I've had in the past for my sleep and other things counted--I did try the one my PCP suggested when the eye pain first started about a month ago, but it made me more dizzy and nauseous. Dr. White said that's because those drugs lower your sodium and they are designed for seizures, not for this neurological pain issue, but they can be helpful, but it was never their intended use so he feels this medication will really work for me, especially considering my history with all the vestibular issues.
A fellow PCD pal commented on my Facebook post that she has the same issue and a similar drug has worked wonders for her--she had migraines everyday and it took a little bit but she couldn't believe it when she woke up one morning and her migraine was gone. She said the hardest part is the injection site is pretty painful (which I can now attest too--I was planning on doing both quads, but it hurts to walk now on that leg so I'm thinking I might try the stomach tomorrow so I at least still have one good leg) and the cost. Thankfully, Jord's company provides great health insurance so the copay is higher than your typical generic, but to me, $35 is nothing lol. The pharmacist called me later and found a coupon and I wasn't going to owe anything for the 2nd dose.
I started this post and wrote the above in the early afternoon....right after I took it, the right side of my face got hot and my tongue tasted like a metallic taste but I didn't think anything of it because I taste the saline and heparin when I get my port flushed--it's a weird nerve thing that happens so in my brain since it works on nerves I thought it was just kinda messing with things. Well as the night wore on, my tongue and throat started feeling weird and itchy. With all my allergies/adverse reactions I can't take Benadryl so I took some Zyrtec but it didn't do a ton--it wasn't getting worse but it wasn't going away either. We debated going to the ER but decided to go to CVS and get Allegra on top of the zyrtec--I took both of them a few years ago to tolerate and antibiotic so I knew I could do it. I talked to the pharmacist and initially she said she wouldn't take another antihistamine but when I explained the situation she said just don't do it more than 3 days.
We got home and it wasn't getting better and felt worse so we looked at my throat and it looked like there were bumps on the back of my tongue so we decided to go to the nearby ER which is a micro hospital. They started taking my history in triage and they had to get my allergy list which is lengthy and I have to spell most of them for them to get them to come up in the computer lol. The NP came in and looked at my airway and said it looked beautiful...then, "I'm gonna give you some steroids"...."I can't have that." "Ok, Benadryl". "I can't do that either." "Ok, Fomotidine" "I can't do that either." "Well, I don't know what I can do for you then." "I can have epinephrine". "I'm not giving you that--it will raise your heart rate and make you feel like crap." She said something else and then walked out of the triage and my heart sunk as I was thinking, "so we came to the ER and they can't do anything more than what we were already doing at home."
They got us back into a room and she came in and asked questions and explained things more and listened and said she didn't want us to feel like we were kicked out of the ER with no help. She gave us a couple options--we could stay there for 4 hours and have them observe us and then if anything worsened they have everything there. Or she could prescribe and epi pen and we could pick it up and watch things at home. We figured out CVS closed at 8 which was in 30 minutes so she was on it like a shot and got them called and they were waiting for us and we were discharged and out of there in 20 minutes and got the epi pen 5 minutes before they closed--it is literally the fastest ER visit I've ever had and I've had a lot of them. She said she was shocked that with all my allergies I didn't have epi pens, with the emphasis on the plural--she said I need to have them everywhere--in my cars, in my purse, in the house--Jord said something about the dog could have one and she said, "have the dog carry a pouch" and I was like, "I'll train Blue to bring me and api pen!" Thankful for an ER NP who listened to us and respected us and didn't try to force medication on us and then abandon us when we refused like doctors have in the past--on more than one occasion.
It's definitely been an emotional roller coaster of a day--from being nervous about the results in the first place, to being relieved, hopeful, and excited, to then anxious and scared having an allergic reaction. I'm thankful God has provided people in my life that are in the medical field and for all the knowledge and experience and for God's protection--if I had gotten the two shots it would have been much worse--so often when we have to wait or something doesn't work out we don't always get to see the bigger picture or the "why" behind it, but we can trust our mighty Savior, and today He protected me big time. My head feels a bit weird too and I've been more nauseous and my quad that I did the injection in hurts so my body is now dealing with a whole lot more and it was already dealing with a lot. Jord was also a trooper tonight--he decided to stay home from Bible Study so we could get a jump on packing to move and we got one box packed before I started feeling weird, but thankful he was home and able to watch me and care for me. Definitely be praying for him too as these reactions stress him out a lot--but oh so thankful for him. Tonight when they started taking my medical history he asked me to repeat PCD multiple times and spell it, I said "Yeah, I'm a professional patient, I just have to pay to be one instead of getting paid...I was going to nursing school but I quit to marry him 20 years ago." He turned around and said, "You're a lucky guy!" Jord was still worried about me and definitely did not feel lucky tonight and was kinda straight faced so I said, "Yeah, but he has to take care of me all the time and doesn't feel so lucky tonight" and we all laughed. But it's so true--on the way home he said, "Instead of buying a vowel, could we buy a break?" It's been a lot lately and with surgery approaching and trying to figure out how to support my lungs but having that renewed sense of "medications seem to do more harm to my body than good at this point" we are really gonna have to pray and think hard about what we are willing to do pharmaceutically.
I'm almost done with treatments so I'm going to go relax and let my brain veg but wanted to give you guys the update. The pic of my scans is really cool and it's amazing to see the intricacies of God's design!
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| Top left is the blood vessels in my head, then top right is my brain, bottom left is obvious, and bottom right is my eye. My eyeball on the bottom left looks a bit wonky lol |
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