Pains and Points

Big Daddy scored points today. I'm always complaining of pain, specifically in the neck/back region (but also others). I go through so many products it isn't even funny. thermacare, muscle rub, icy hot, etc. The gels, the sticks (like deodorant only muscle rub), the creams, patches, you name it. I need it. Big Daddy usually does the honors even though he hates the feeling of creams/lotions/gels on his hands. It's nice that he does that even though he hates it. Which is also why he buys the sticks of it. He doesn't always have to rub it in by hand.

Anyway. Tonight he goes to the store with the older girls and said he was going to bring me a surprise. They didn't have what he originally planned but he took a trip over to the pharmacy section and bought some Stopain spray. It works SO well. He also looked at I'm guessing caboodles (by his description). He bought me a big travel toiletries case that I use for most of my medical things. Meds, sugar testing things (for if I suspect hypoglycemia and to raise it), creams, rubs, eye drops, nose spray, anbesol, etc. Just basic necessities and comforts. I have my heart rate watch/strap and epi-pen in there too. If I had more than just the bp machine I'd be able to use a larger case but I'm fairly sure it's the only thing I currently have that doesn't fit in the case. It's kind of irritating and sad thinking about how I'm not quite 25 and need/use all of that and could probably use more.

Neurology Follies, Ped Gastroenterology and a road trip.

Still waiting on my prior authorization. I didn't call on Monday and Tuesday we were at the Pediatric GI for SDiva. It took us almost 3 hours to get there. Big Daddy went with us since I most likely wouldn't have been able to make the drive on my own. So I called first thing this morning and left a voicemail. The nurse called me back around lunch and said they HAD finally received the first form and sent it back but that they'd sent ANOTHER one and now they were working with that form and she'd keep me updated. I'll probably call back on Friday. She said normally the pharmacy does most of that work so she was surprised they were sending it to them. This is driving me crazy. If we don't get it situated soon and a follow up scheduled I'm going to go ahead and request an appointment for neuropathy symptoms.

As for the Ped. GI, like I said, it took us almost 3 hours to get there. There was road work outside the city and in the neighboring cities, with detours and everything. One lane traffic on the interstate doing max 25 miles per hour. We got there at 11 for a 11:30 appointment (after leaving home at 8:20 AM). It was nearly 2 before we saw the doctor, so a little over 2 hours of sitting there. The doctor asked about a diagnosis that had been written down, apparently either her normal pediatrician suspected a possible cause or something because he asked if it had been diagnosed with a scope and I said I'd never heard of anything so he looked again and saw a question mark beside it meaning the doctor suspected it. Anyway, he ordered both an endoscopy and a colonoscopy. He wanted to do it next week but Big Daddy needs advance notice to get off and I can't do it alone much less repeat it next week.

The trip took a lot out of me. I wore my compression stockings and still felt minor discomfort in my legs, my arms were losing some feeling if they weren't kept down. I fell asleep at least once (Big Daddy said twice but I don't remember the first one) on the way home and literally felt as if I couldn't move once I got back into bed and relaxed. Then I slept all night. Big Daddy laid out the girls clothes for school, made sure their homework was back in their bags and woke them up this morning for me. All I had to do was fix their hair, make DCourtley's snack (kindergarten eats last so they require a daily snack). I went back to sleep shortly after and slept until after 12. I feel much better now but still not 100% but still, I didn't expect that to drain me QUITE as much as it did. I mean we were home before 5 and I did next to nothing until bed and slept all night. But I guess it'll give me some idea of what to expect next time. I'm for sure taking headphones or something, and maybe I need to invest in stronger compression. The ones I have now work well for around the house and for a while even under strain but I still notice discomfort after a while, whether sitting or whatever. And I want to get some compression sleeves too. My arms are just as bad as my legs. I was able to recline a bit but full on laying isn't an option. I did take plenty of fluid to stay hydrated. And we stopped about 3 times to stretch legs etc on the way there. I'm not sure what else I can do.

We have to go back next month and either stay at the Ronald McDonald house (if they have an opening) the day/night before or leave around 4:15 AM the day of. THAT will REALLY mess with me. My narcolepsy will go crazy not to mention my dysautonomia. That is one of the options but honestly, the least preferential of the two. I'm not sure what to do about DCourtley. We took her with us this time because we had no way to get her from school (since it was after 4 when we got home) but I don't think it's necessarily right to keep her out every time. I'm fairly certain we can find her a way TO school but I don't know about home. And I don't feel comfortable leaving JSmiley with anyone but I don't know if we can bring her. The nurse asked if we'd be able to find childcare or if we'd have to bring them. Of course, it'd probably be better if we COULD find childcare for them as we'll be waiting on the procedures plus 1-2 hours in recovery for the sedation. That's just yet another thing to figure out.

Anyway, I'm still not feeling that great so I'm going to go relax for a bit. Later.

Neuropathy and Neurology

Still waiting. Always and forever waiting. I called my neuro's nurse on Friday (4/4/14), a week after the first check call. The nurse said she had called and they said they were waiting on a form but that she'd never gotten one. Which confused me so I reminded her about our conversation last week where she'd said the pharmacy sent the prior auth to the old number (which, let me remind you, is on the first floor of the same building, in their former office which they shared with Urology, that is still there). I don't understand why they wouldn't/couldn't take it up there. Anyway, she said she still hadn't gotten anything, that the number they sent it to the second time was correct but sometimes things don't go through. And to keep calling her if I hadn't heard anything.

It's been nearly a month (the 10th is a month I think) since my neuro sent in the prescription. That is absolutely ridiculous. I suppose I'll call tomorrow during lunch and see if they'd received it yet. And Wednesday. And Friday. I mean, it's a fax, not snail mail. And considering the fact that my neuro pushed for this at EVERY appointment after my narcolepsy diagnosis, I really shouldn't be the only one trying so damn hard to get it approved. Plus, they wouldn't schedule a follow up until after I'd gotten everything situated. They have to see me regularly on Xyrem, I believe she said every 3 months and I think they do blood work at those appointments. But scheduling depends on everything getting situated.

I don't know but I think she's the doctor I need to see about testing for neuropathy. I've got almost/all symptoms of Autonomic Neuropathy and probably half of Peripheral Neuropathy symptoms. I never knew there was a connection to those symptoms but like everything, I mostly ignored them (well, as much as one CAN ignore stuff like that). Sure it could be coincidence, but I don't think it is. I'm sure I could ask my EP next month but I'm fairly sure he'll just tell me that's my neuro's jurisdiction.

I like my EP better to be honest. He listens more and I don't feel like he brushes me off. I may not always get what I want at that appointment, but it's never a no. I really hope I don't have to fight hard for this. It's so exhausting just constantly fighting for my health and recognition and even life. Anyway, I'm getting sleepy. Time to rest. <3

Neuro and heart palpitations

I got MOST of everything situated. Got ahold of my neuro nurse and she called the Xy pharmacy. Apparently they sent it to the wrong fax number. They switched locations (just floors, same building) a bit ago and so they have new numbers. The nurse said she'd put the correct fax number on the papers so she doesn't know WHY they sent it to the wrong number but that's situated. Now I just have to wait on the verdict from my insurance.

I had a really bad day today. I've been having palpitations infrequently since the 18th. I had more severe ones today, and when I finally checked my heart rate after the worse was over and it was 50 BPM and slowly rising. I'm assuming when the worst of it was happening it was in the 40's. I thought about calling my EP but I feel silly. Plus the office is half an hour away and the kids are on spring break.

If it happens again before my appointment I'll definitely call. Anyway, I'm having trouble staying focused so, more later. <3

Appointments and Decisions

So busy. I don't even know how to fit everything in my week when it exhausts me. My phone screen cracked (barely) and now my phone doesn't work at all, so I switched back to my older phone ALSO with a cracked screen that DOES work despite being further cracked than the other one. Stupid phones. I need to invest in the stocks for shock resistent cases and bullet proof screen protectors. I'm so clumsy sometimes. I've dropped numerous phones and either cracked the phone, the screen or wound up running over it when it bounces un-noticed under the car. I've also dropped just as many in water. Total clumsy when it comes to phones. More have died naturally, charge ports being messed up etc. I have the worst phone luck of all time.

On top of all that, I had all my appointments stored in the phone and for some reason the calendar didn't sync so I missed my ENT appointment this week. Just a follow up but still. Now I have 3 appointments the first week of April (though only one for me so far). SDiva has her yearly (along with DCourtley) and then the following day we have to take SDiva to a children's hospital 2.5 hours away because she needs to see a GI doctor and the (only) one closer to us doesn't accept our insurance. And open enrollment for switching isn't until May but won't take until July.

I have most of my appointments written down in my notebook but I'm sure I'll wind up forgetting something. It's just SO easy. Most of my doctors call a day or week (or anywhere in there) before the appointment to remind me so that isn't AS difficult, except last minute I wind up scrambling to get everything I need. But my ENT does NOT call. At all. Ever. I've missed two appointments because of forgetting what time/losing the appointment card. Which I understand is all on me, I'm a grown woman, I SHOULD, in theory, be able to keep track of this stuff but I'm usually so sleepy. And brain fog, I rely HEAVILY on my cell phone or other people to remind me things. And my cell phone broke and didn't back up when I switched like it SHOULD have done. I even tried to sync it manually multiple times. I don't know why it didn't work. Oh well. I guess I'll just have to start taking multiple precautions.

In further news, I called the pharmacy again about the Xy meds. My neuro called it in probably 3 weeks ago and I've only spoke to ONE of the people who was supposed to call me. I even called the second and left a voicemail but still never heard back so I called again this afternoon and was told that they were waiting for the preauthorization. Apparently they'd faxed it to my neuro to submit to my insurance and hadn't heard anything from anyone, neither my insurance or my doctor. I tried calling my doctor at 4:36 and they'd already closed with no option to leave a message unless you know the extention, which I don't. Which seems remarkably irresponsible. Most all doctors I know at least have a messaging system so that if a patient needs help after all but non-emergency they can leave a message that gets checked randomly or at least an answering service. I had this same problem before when I was having numbness and tingling in my hands/arms and face as a side effect to the Topamax. It was the weekend and I wasn't able to get ahold of them and by the time I could, it'd stopped.

I'm debating on calling my Electrophysiologist. I've had a few episodes of heart palpitations on the 18th, 19th and 21st and minor ones infrequently over this week. And also, my calcium channel blocker pretty much does nothing for me. I really wish I were back on beta blockers or something. I can't get allergy shots on the beta but the CCB just does NOT seem to work, at all, even with the increase. I don't know what else to do. The blood pressure meds seem to be holding steady for now so at least there is that. But I just don't know. I can't stand my heart racing like that for the littlest things. I can't even carry JSmiley up the steps without it seriously taxing me. I need Big Daddy to do so much because I just can't. It's so hard. But what can you do?

I still don't know if I want to go to Vandy or not. I haven't decided but I don't know. I want to feel somewhat better even if there isn't a cure and I'd like to know ALL my diagnoses, I'm just that type of person. I want to KNOW everything about me. I don't really know where it comes from, there's probably some psychological explaination but I'm not sure I'd want to hear it. I want to know every single detail about my health (which is partly why I put up with the doctors for 13 years and didn't give up, even now I'm still seeking answers) and I want to know about my family history. I love geneology and I want to do one of those tests that tell you your heritage percentages. Everyone here thinks it's pointless but I feel the NEED to now. Just like with POTS, Dr. M feels as if I DO have POTS but will not officially label me unless Vandy does. That "I honestly believe it's POTS instead of IST, but..." just isn't good enough. I mean, it kind of is but not over all. I sound kind of weird saying my doctor says I most likely have POTS but it isn't official. That irritates me. Just like when I wouldn't let the cardiologist leave it alone at "SOMETHING is wrong but we can't treat it unless we know what it is, so there's nothing we can do." I pushed for more testing then. But I just can't make that YES I want to go or NO I'm ok with not going. I don't like being poked and prodded, I am EXTREMELY wary of other doctors (even my own sometimes). I'm afraid of what answers I will or won't get. But yet, I still have that nagging in my head that I WANT to know. How am I afraid of the journey but still feel the overwhelming sense of NEED to know.

Plus I can't go on my own, not only would the testing likely DRAIN my but I can't drive that far on my own. My current doctor visits kind of drain me. I believe my max is probably about an hour and a half round trip plus testing/waiting/appointment and I start getting really symptomatic. Big Daddy is going with us to the GI because I'm almost certain I can't make the drive by myself. I'm not even sure I'll come out unscathed withOUT driving the whole way (or even at all) since I need to recline and rest after being up for a long period. I might be able to make it there and through the appointment, but the drive home will likely be a bit much. But that's all just a guess since I haven't gone that far in a long time. But I DO know I start feeling drained after some of my more local appointments and they're much closer than the GI or Vandy. I really just don't know. My next appointment isn't until May but I could always call before then, or just to report some of the things I've felt lately but I don't know if I'll be able to make that decision. I guess only time will tell. If I can avoid the anxiety of course. Anyway, it's dinner time and I'm starved. More later!

Lookie What I Got!

 

I'm REALLY happy with this company. I was impatient as usual but I'm already the proud owner of thigh high compression stockings. Now I want more. I almost missed it, I'd been refreshing the tracking app since I woke up (both times). Luckily I heard my screen door shut since I can't hear knocks upstairs unless it's really loud or other circumstances. I ran downstairs thinking they'd left the package but instead there was a delivery attempt note. There was no way I could go pick it up or wait for re-delivery on Monday. But I heard the truck start up so I grabbed the note off the door and ran toward the street. Luckily he saw me running with the paper and assumed I was his delivery and backed back up and gave me my package.

 

They fit wonderfully! Yes, I immediately put them on. I suppose the compression will take some getting used to, I'm glad I got 15-20 to start, to get used to it. I'm thrilled with the company (or companies). Despite my impatience it was very fast! The order was placed at the end of business and I had tracking in my email inbox by end of business the next day. AND even though I paid for standard shipping, I got it before end of business the next day. I suppose it'd be because I'm close to the company that makes the one I bought but still. I expected to wait up to a week or so. So far I'm super thrilled with everything. I'll definitely be purchasing from there again.

 

In fact, hopefully I'll be purchasing again SOON. Big Daddy likes them too especially since they appear to work. I may eventually go up a strength since I can feel where it wants to tingle but the stockings are working at this strength so maybe when it's time to replace, after I'm fully used to these. There aren't many color options on this site for 20-30 though. Still. I'm loving the 15-20 options. 20-30 pretty much has ebony and natural. 15-20 has sandstone, ebony, wheat, natural, mocha, smoke,navy, etc. Wheat might be too white for me, sandstone matches my summer color and isn't too far off of my winter color. The other's I'd get to match clothes. We'll see.

Edit: 20-30 does actually have more color.  For double the price. :/ 

Compression and Narcolepsy

Compression stockings.

I've noticed for years now that my legs and hands "fall asleep" very easy. Like, if I sit with my legs in any position but out, a good portion will be affected. My arms, can't be up, can't have much pressure, or they too will go numb. Case in point, my head is on my hand, arm at an angle like kids lay to read or do homework, already tingly. I've noticed several spoonies mention compression hose, I asked my neuro but she was clueless as to strength (15-20, 20-30, etc) and mainly knew about the TED hose so she told me to ask my EP. I left a message for the nurse but they never called back.

 

I just noticed this entry was... fractured. I skipped straight from seeking medical advice to refreshing my order screen. Brain fog I presume. Anyway, I went to one of the sites another Dys blogger recommend and ordered a pair of close toed thigh highs. I'll reevaluate strength and such when I see my EP again since the nurse didn't call back.

 

I've refreshed my order screen a million times. It still says pending. I didn't exactly get fast shipping but I'm impatient. I'll check it probably several times a day until it gets here. Patience is not a virtue I posses.

 

Narcolepsy
In other news, the central pharmacy called, apparently I'll receive a few calls from them, the one I got yesterday, the one I should get no later than tomorrow from admissions about insurance or paying, from their pharmacy staff to discuss meds I'm on etc, and nursing staff, I think I'll get my own helper nurse or something. And there's also a patient mentoring thing. I don't know. She said they got the rx request the day before the call and the call was yesterday and that admissions usually calls in 1-2 days. I didn't realize I'd be talking to so many people or that it would take a while. Again. Patience has never been my strong suit.