Well another one on the couch … we have been trying to go out all week, but I haven’t been feeling good. Tonight was going to be date night but my Migraine will not stay away and it leaves me being able to do nothing but enjoy the few hours I do feel ok 🙂
I had a few good encounters/interactions with Doctors, a Pharmacy, and kind of the Insurance company so I will take that as the win this week.
I saw my new Pain Doctor, and I loved her, so that was fantastic. This is the wife of the last guy I saw. I liked their practice, and the Nurses and staff have been really great, but I just couldn’t see getting along with the guy. I am so happy I liked her, and she seemed very willing to help and work with me which is soooooo great. She was wearing super cute Cowboy boots, and I LOVE Cowboy boots👢 so she mostly had me from the start 😊. For the first time in 8 years of pain I was prescribed a ER (Extended Release) pain medicine and it seems to be helping. It is taking some getting used to and has sent my headaches outta control but once those get more under control, I think this should be better. Once I can go off the blood thinners (months from now) she is going to try something on my neck muscles with Botox that I had never heard of, so as usual I will try anything, and am excited! I’ll see if she can do a few shots in a few wrinkles near my eyes too, maybe Insurance will cover that!!
Speaking of the headaches, they have been getting worse and worse and finally turned into a full blown Migraine on Friday. I ran out of my Medicine I take and the Neurology Specialist I saw this week couldn’t refill it for me, something about certain medications and certain Doctors and who knows with Insurance anymore. I spent all morning on the phone with my Primary doctor and the Pharmacy and they were talking to Insurance because Insurance will only cover 9 pills per month, and my Doctor asked for 30, and I literally only want one pill !!!!!!
The pharmacist was super helpful and talked to the Doctor and Insurance and after like 6 hours and John having to go to the Pharmacy twice I got my medicine and it went away. It just Keeps. Coming. Back.
I took the train to Northwestern today, repping the Cubs
I am really lucky. Like really really really lucky. Someone is definitely looking out for me. Not only did I survive tearing my aorta, but I have also now torn a second major artery, and somehow escaped the worst case scenario again. This can get frustrating, but I am really glad they found both before they turned into something really bad. Again, I am REALLY LUCKY.
I went for my follow-up appointment today at Northwestern and it went so much better than talking with that last Doctor when I was in the hospital went. I got a few more diagnoses and referrals, but I am overall very happy with how everything went today. I saw a Nurse Practitioner today in the Neurology Stroke Program (I guess because of my dissection, and because it can cause a Stroke, this is the speciality I see now). She answered all of my questions and explained everything really throughly and so that I would understand it, and I always appreciate that. I pretty much have to take it easy for the next 3 months. I will have a follow-up scan in July, and untill then we just let it heal. I have no patience for “letting it heal,” so you can probably expect a whole bunch of Blog posting from me for the next few months being at home is already driving me up the wall. This is actually the LONGEST I have ever been off work. Every other time I have needed to take time off it has been for surgery and I healed and went back. Even my initial accident, I went back after 6 or 7 weeks. I have been off for two months now, and I am going to need to find some new hobbies because I got bored of TV weeks ago 🙂
So she said it’s going to hurt alot, and it is going to take time to heal, but it should feel better. Hearing that helps of course!!! I don’t think all of the pain is ever going to go away, but if it will come down a few notches, I am cool with that! Tomorrow I go back to Pain Management. Hopefully actually having this diagnosis will help this Doctor belive my pain and start to actually help me with it. Right now, nothing is working 🙁
She also referred me to a Cardiologist, because I have some new Cardio related diagnoses to add to the list… I got a bunch of tests done while I was there that I have never had before, so I guess they found some new stuff, fun. I have a Murmur, PFO (Patent Foramen Ovale, or a hole in the heart), and Tachycardia. There are no appointments available until June 1st, but I am on a cancellation list, so I might be able to get in sooner. It’s just one thing after another here! Is this list ever going to stop???
After Northwestern, I had Physical Therapy. I can’t really do much yet in physical therapy, but she worked on some of my muscles today, and that seemed to loosen them up a bit. I got a bad headache after, but that happens alot lately, and is probably from this dissection. The headaches have been coming back almost daily unfortunately.
Overall a good day of appointments, now just to find a way to feel a little better!
I’m home from the hospital and I don’t even know where to begin….
This picture sums up how I feel about my recent hospital visit 🙁
I am so happy that I listened to my crazy body and went to the ER on Tuesday. I couldn’t get out of bed all day, because the pain was so bad, and just as John (my husband) was going to sleep I said I don’t think this can wait… and we headed downtown to Northwestern Memorial Hospital in Chicago. It was an absolute nightmare from start to finish, but I think overall it was really good I went there. Northwestern has a great reputation, and has amazing doctors, but honestly I have never seen such a shitshow in my life. I had 25 Doctors coming to my room daily to ask me questions, but I was so lost the whole time. They kept telling me things they were going to do, treatments, tests, medications etc. and then the next doctor would come in and have no idea what I was talking about, and have a whole new plan. I ask alot of questions, and am probably a pretty annoying patient but I still deserve to understand what is happening with my body, and after leaving there I have never been more confused.
We waited 5 hours just to get a room in the ER, they were pretty busy and had patients in the halls on gurneys, which is definitely not unusual for the ER there. Right off the bat the ER doctor said they aren’t going to be able to figure out what is wrong with me, and all they could do was maybe help with the pain. Great, so glad I drove an hour and waited 5 hours to hear this. They were going to order a CT to make sure my stents and bypass were in place, but other than that I would just have to follow up with the Doctors I was already seeing. I went there hoping they would just admit me and figure it all out, but this wasn’t looking good at this point. The ER doctor wasn’t very nice, and didn’t really give the vibe that he wanted to help. What else is new…
I had the CT and fell asleep waiting for the results. The ER doctor came back in, woke me up and told me I had a dissected artery and that someone else would be in to tell me more. I am half asleep and not really understanding, but I know that anything dissected is not good, especially an artery.
The next few hours were really confusing and scary, as they kept telling me they had to make sure I hadn’t had a stroke, and was being moved to the stroke floor (neuro). They did an MRI of my brain, two Transcranial Dopplers, X-rays, an Echocardiogram, and a CT. Thankfully nothing showed a stroke.
The thing that is toubling to me, is that this doesn’t even explain my pain, or all of the weird things going on in my body. This is just one more for the list. I feel like I am back at the beginning, but with added symptoms, and more medications. I’ve been trying to go OFF medications, I feel like doctors just keep adding meds that don’t help. The ones added by the hospital are very necessary, but I feel like I am taking a step backwards 😒. The only thing this dissected artery explains is my neck pain and my headaches. I am hoping this new medication I am taking will help with this over time, but it could take months…..
Basically the course of treatment for a dissected Vertebral Artery is to take anti-coagulation medication and check on the progress. I am still really lost on all of this but here is how it was explained to me… There is a tear in the lining of the artery, and when the tear happens, it forms a clot. The blood gets trapped in the tear and has no where else to go. The medication I am taking will thin the blood and dissolve the clot. Hopefully as this happens the pain will get better. ?
I was on the Neurology/Stoke floor so alot of the Doctors there don’t really understand all of my other Vascular issues, or that I am in a ton more pain than I should be. THAT is what is concerning to me. Its been really hard to get my pain under control, and if the pain isn’t really explained by this issue, where is it coming from?!?!?!? And why are none of my doctors concerned by this? I am very concerned by this. This was why I wanted to go to Northwestern, so they could look at my body as a WHOLE and maybe get some things figured out. I feel like all I have is 1000 more questions.
They switched my medication I take for my heart rate/migraines and my heart went out of control. My heart rate was going up to 150 from taking a sip of water and barely moving. It was up at 170 when I got up to go to the bathroom and walk 4 steps. My heart rate NEVER goes this high unless I am doing serious Cardio, and that is not very often. I was on Propranlol for the last probably 7 years, and they switched me to Varapamill because they thought it would help more. They didn’t taper it or anything so it was probably just withdrawing from something I have taken every day for 7 years. They were still trying to discharge me while this was going on….??!! I realize I am probably a little more paranoid about my own body then the doctors are, but when I am getting dizzy getting up from my bed, and my heart feels like it is beating out of my chest, I didn’t really feel like it was time to go HOME?!?!?!
They ended up letting me decide if I wanted to stay another night, and I decided yes. After all this though, my “team” of doctors never even came back. They sent in what seemed like the least experienced and least helpful one to “deal” with me Friday when I was trying to get discharged. My nurse told me at 7 am that I would be discharged in an hour, and to have my ride come. Well I didn’t get discharged until around 1:30pm and it was not a fun morning. This doctor that they sent in lied to me multiple times, and I will NOT have her treating me going forward. She actually ended up apologizing to me in the end and thanked me for teaching her something about how medications and Pharmacy’s worked. Yep, I taught a doctor all about how Pain Medicines work at the Pharmacy, and she literally had no idea. She wrote the prescription wrong, and I have had the same issue multiple times, so I tried to explain to her what it needs to say in order for me to take my medication correctly, and be able to get a refill when I see my pain doctor this week. Not only is it hard enough to get a Doctor to prescribe something that helps, but then you have to make sure it is written correctly because the Pharmacy is worse than the Doctors and they REALLY don’t care if you don’t have the meds you need. She actually told me to take them NOT as she wrote the prescription, and just take more, which is wrong on so many levels. She was just lazy and didn’t want to re-do it. She fixed that one, and it was ready when I got home. The actual important medication that she prescribed was not of course. My new blood thinner was not there, and me and John spent all afternoon into evening calling the hospital and pharmacy. I got hung up on a few times before I gave up, and John finally got through to my Nurse (who was awesome I have to say) and after she sent the request to the Doctor 3 more times, it was finally at the Pharmacy at like 7pm. It shouldn’t be this hard. I just want to feel better, and our crappy health system is making it damn near impossible. #Onward #AndTired