Wednesday, September 26, 2012


Still no news on test results, I think I'm going to call today and switch the prescription (reflux) because it isn't working and see if any have come back. I'll wait until after lunch though since I have to call one of my doctors too and I'm giving them until end of lunch (I called them yesterday and never got a call back, that really irritates me).

I had my neurology appointment yesterday. It was supposed to be tomorrow but the receptionist called Monday and asked if I could come in earlier. And now I'm left in the dark again because she isn't 100% convinced I have narcolepsy, she said it could be or a REM abnormality or hypersomnia or something and while she treats all of those, she isn't a sleep specialist. She also said the sleep specialist that diagnosed me with narcolepsy was a pulmonology sleep specialist and I need a neurologic sleep specialist so I got a referral for that.

(Let's review, I see a NP since my GP/PCP is on extended leave, an OB/GYN for normal stuff, a therapist, and a Cardiologist (though that's only on an as needed basis since I see an EP too) all in my city, I see a Neurologist in a city 30 minutes away in MY state (joys of living on a state line), an Electrophysiologist 45 minutes away in the state I live near and my Neuro thinks the closest Neuro-Sleep specialist is 30 minutes away in neighboring state. I think my city is in the middle of all of them so it's not THAT difficult for ME. Though if SHE needed to see the sleep specialist or EP it'd be an hour to an hour and 15 minutes one way (just to get there, never mind the wait time, appointment, and drive back) so I can see why she was hesitant and asking if it were ok. Her nurse is working on the referral so hopefully I'll hear something soon. The receptionist said sometimes they (sleep specialist) want to review your records first so I'm going to put it out of my mind for a week or so then maybe I'll call since I'm waiting on something else.

We talked a little about treatments and she said she wasn't sure she wanted to give me a stimulant because it would really clash with what my EP is doing but she'd request the records and go ahead and submit it to insurance (she said both drugs are usually fought by insurance whether it be state or the best private insurance, the all usually deny it so it'd be a week or so for that - which is why I said I'd put the other matters out of my mind until next week at the earliest unless they call me).

Then we talked migraines, she asked how the Gabapentin was doing and I told her that it helps but doesn't completely get rid of it and she asked if I had tried to up the dose and I told her about the one where I took 3 plus 2 ibuprofen. She asked if I'd ever tried a prophylactic drug (a drug that prevents them from occurring instead of gets rid of them when they're there) but then started talking about "abortive" drugs, or drugs you take when you get a migraine (our anything else) to get it to go away. We talked about several and there were a few that weren't good matches, one (I think the usual go to "abortive" drug) makes you drowsy. Denied. Some raise/lower blood pressure and stuff and eventually we settled on Topamax (a prophylactic) which I have to take once a day for 7 days then up it to twice a day thereafter. She said it could lower my bp so to keep an eye on it and let her know if it's lowering or anything and that usually with Topamax they increase fairly rapidly but she wasn't going to do that as fast because of my other conditions/treatments. Which is smart. I don't want to start a bunch at once or increase rapidly in case I react to it. Truth be told, as my medication list grows I'm getting kind of frustrated.

I don't know. I'm frustrated by all of it. I know some people have it worse but I'm frustrated. More later when my frustration levels are under control.

Saturday, September 22, 2012

Emotionally Exhausted

Now that my part is over I can write about JSmiley's appointment. It went ok for the most part except she still isn't gaining weight officially. I swear it feels like she IS gaining (and I'm not the only one who says that). But the stats say she isn't.

7 pounds 4.7 ounces (18.5 inches) at birth
11 pounds 12 ounces at 2 months
13 pounds 0 ounces (24 inches) at 4 months
13 pounds 8 ounces (just over 25 inches) at 6 months
14 pounds 12 ounces at 9 months
15 pounds 9 ounces (27 inches) at 12 months
15 pounds 10 ounces (27 inches) at 15 months.

The first 4 months (except birth) she was supposedly "overweight" according to her pedi and at first the slow didn't bother him because "she's just evening out".

I honestly don't understand. She eats just fine. He ordered a BUNCH of tests. Granted one was the test I delayed at her 1 year appointment (lead and I think to check for anemia) since she was already not feeling well and got shots. She got shots this appointment too but we both felt bad after so we came home and slept instead of getting the tests. I don't feel bad for delaying it from Tuesday to Friday. She was feverish for 24 hours after yhe shots plus I didn't get the urine and they aren't giving my baby 3 shots, a ton of blood work, an x-ray AND a catheter in the same day.

I wasn't about to let them cath her anyway. The blood work and x-ray I can't do and there's no alternative but I'm capable of a clean catch urine sample even with someone who isn't potty trained. It took 45 minutes but it's better than a catheter.

SDiva had to do the same tests (not sure if she had to do ALL the same ones or just some of them). I took Mom with me that time and my neighbor this time. I can't hold my kids down. I mean I can but I feel so bad and my first instinct is to stop it. I'm sure I'd probably be able to do it if I had to and I kind of feel bad for not being the one to hold her but it makes me feel bad that I can't stop it. I feel bad holding her down for shots and that's over quicker.

Anyway, they took 5 vials of blood for 7-9 tests. I know one was the lead test, I didn't write down the tests (which is shocking but by the time I thought about it, I'd already handed over the paper). Then I know there was SED rate, chromosome and CBC. I can't remember the others aside from the urine and bone age x-ray.

SDiva's all came back normal and I'm hoping JSmiley's do too (DCourtly escaped the trauma, she's smallish for her age but not as bad as her sisters). I'm semi freaked out still. Her doctor said he didn't think anything would come back abnormal and I feel that way too BUT... None of MY doctors thought anything was wrong either. Logistically I KNOW she isn't me but I'm scared. I don't want my kids to be sick. I mean, no one wants their kids to be sick and I'd still love them, I think I'd probably have it easier to understand since I research everything and I'M sick, I know the drill so to speak, but I don't want my kids to be sick.

I don't want them to develope any of the conditions I have because of how hard of a time I'm having. If I felt like I did in 2008-2009 or earlier it'd be different. I didn't have NEAR as many problems as I do now. I had more energy and could chase them around. Now I have almost no energy especially with the fatigue and I feel like THE worst parent EVER. Especially with the amount of help I need with them right now but I'm hoping that if I can treat the Narcolepsy and get energy during the day I can cut back a lot on that help. Maybe if I can treat my conditions I'll be able to almost eliminate the need for help except on bad days. It's not fair to my kids that I can't get up and do anything. I know it isn't my fault but how do I explain that to my kids. Even my husband gets aggravated with me and he's an adult. All I want is to be a good Mom and these conditions (untreated/unmanaged whether it's because the meds aren't helping, because they clash, because I can't get help, or because my doctors keep rescheduling or making me see ignorant NPs) prevent that and I feel SOO bad about it. I had to make Big Daddy cuddle with me while he slept and try to go to sleep because I had an anxiety episode late last night over it. I don't want my kids to feel as if I don't love them or care. I'm trying everything and seeing all these doctors and tests and treatments because I WANT SO BADLY to be back to where I was in 08/09. I was still sick and by no means could I do a lot but I needed NO help with my kids though breaks were appreciated. That is my goal and I hope I can do it. Anything beyond being back to that would be a plus. I'm just afraid they won't understand, that they'll hate me or resent me for it. But I don't want my kids to ever feel this way. Either the conditions or the emotional stress of needing help with THEIR kids. And I don't want them to have anything else wrong with them. I'd love them regardless and do my best to help them and be their advocate. I just want them to be healthy and happy.

I started seeing a therapist too for my anxiety. I've only seen him once so far for the intake appointment. But he mentioned that Gabapentin is a mood stabilizer. I haven't taken any of mine since my last migraine that wouldn't quit and I noticed I didn't have any anxiety during that week I had to take it off and on so I don't know. Maybe that's why and since it's out of my system I'm back to being moody. But it doesn't help completely with my migraines and I think it's going to be switched Thursday. So what do I do. I can't take it AND something else for my migraines. Wouldn't that be over medicating. See, I can't even manage my symptoms because it all clashes along the edges.
Atenolol isn't completely controlling my tachycardia. Midodrine isn't making me LESS dizzy (I'm probably more dizzy at times). The Gabapentin isn't getting rid of my migraines but IS (probably) helping my moods. If I go on Provigil or Nuvigil for Narcolepsy, it will likely speed up my heart rate AND according to the sites, makes all hormonal birth control less effective. My birth control helps me because another pregnancy right now would likely leave me hospitalized or worse not to mention that the meds aren't that great for a developing baby. Can I get a break?

Monday, September 17, 2012

Another Appointment

Well my follow up with my primary nurse practitioner went well. I guess last time I was her last appointment and she wanted to go home or something. It was a complete 180. She ordered 2 x-rays on my back (to be done one day this week) and removed a large skin tag on my lower back. I thought it was a mole but skin tag makes more sense. It was huge and would pull so I wanted that sucker gone. I've had a mole on my shoulder removed a few years ago. It grew back though doesn't stick out like it did pre-removal. I have a huge pressure bandage on my back and since my back was slightly bowed in when the nurse put it on there, it pulls. The NP told me to keep it on for 24 hours. That'd be 10:30 tomorrow. No thanks. It'll be a miracle if I make it to 5 AM. It didn't bleed much when they sliced it off and if it's bled at all since, it's not enough to make it through the gauze of the bandage.

As to my back, she had just asked if I needed any medicines that day (today - also, boy what a loaded question) but I just told her no "but last time you mentioned some tests to see if we could figure out why my back hurts". I also showed her how I can "pop" several locations just by stretching it out (my elbow and knees), how I pop my fingers and toes. And also how easy it is to pop my neck and back. She got it. I know (and she agreed) that it's bad for me but it hurts NOT to. We talked a little about it and she said she may send me to a rheumatologist. I mean really, what's one more specialist.

I talked about the migraine from Tartarus that I had and how I'd had to take 3 of my migraine pills (instead of 2) and 2 ibuprofen and that if it hadn't gone away when it did I was going to go to the ER (which she obviously agreed with since she said "go to emergency" as I was saying ER). Literally, I'd made up my mind to go even with it dulled from the massive amounts (not really massive, 300 mg Gabapentin and 400 mg Ibuprofen, so a good amount still), it wasn't gone so I figured if it was bad enough to need more than that, I needed to be seen. But it disappeared and didn't come back that severe (though it lasted 3 days). That kind of worries me. I have mild normal headaches often, plus migraines varying from seriously irritating to completely debilitating, and occasional twinges that aren't migraines, like a sharp pulse in my head. I think I'll ask for further testing (if there is any). I'm glad she believed I have them and have me meds but that's like going to the doctor and saying I have a clean break in a bone and him/her just handing me pills. I mean, I'm glad I don't/didn't have to jump through hoops and convince her that I do, in fact, have migraines, but, considering this is the Year Of Discovery (seriously, I go from undiagnosed and healthy/no clue what's wrong, to 3 chronic diagnoses in under a year) I wonder if my luck (whether you consider the luck good - I'm finding out and getting treatment, or bad - that there's stuff there TO find) will stretch further. So far nothing will outright kill me, perhaps secondary if I lose consciousness while driving or fall down the steps. But nothing outright. I'm not sure if I should research. I like to be prepared and I've found if I'm knowledgeable and can ask for something specific and state why it's needed, I usually get it, and THAT is why I have these diagnoses (because I didn't accept "Well all these tests say everything is fine"), but googling can make you think your simple cold is the Black Plague.

In other news, JSmiley has a doctor appointment in the morning. It's her 15 month one. Must remember to ask about her still "spitting up" liquids. I think she may have reflux but she only spits up liquids, no solids and not every time. Luckily she's eating big foods and not all milk but she needs liquids.

Ok, more later.

Wednesday, September 12, 2012

Always sick and so much pain

If it isn't one thing it's another. Mostly over last weeks cold but hit with a stomach virus and womanly stuff. Oh and a migraine straight from Tartarus complete with agonizing all over pain (not just my head and neck). But I couldn't take anything. Even water made my stomach rebel. Luckily it didn't hit until after I'd already taken my morning meds but I didn't manage to take my 5 PM med. But around midnight someone reminded me of that "BRAT diet". Bananas, rice, applesauce and toast. The first little cup of applesauce stayed so the second 2 hours later I took migraine meds. The pain is lessening, but I can't wait until it's gone. I hope it takes the nausea with it.

Friday, September 7, 2012

Rapid Onset of Sinusitis-flu-pneumonia

It's that time again. I've never been so confused before. I'm sick but I'm not sure what's going on. I've slept roughly 27 of the last 52 hours. That's rounding up, so technically it's half of 52 instead of just over half. Most of my sleep is broken. Wake Big Daddy up, take meds, feel my phone vibrate, Big Daddy comes in then leaves (sometimes with all the kids in tow) and I fall right back to sleep so I don't know down to the minute but I've got it fairly accurately recorded.

Not last night but the night before I started having a runny nose and some coughing if I over did it. I remember thinking "I better NOT be getting a sinus infection!!" Went to sleep at 1:30 (1st clue I was sick). Woke up and yup, classic sinusitis symptoms. (I had all the symptoms except I don't know what my temp was so I have no clue if I was feverish.)

But as the day progressed, I kept getting worse. It felt like I had the flu on top of sinusitis. And again, I had all the symptoms. I felt so bad mid-evening Big Daddy commented on it. He's always talking about knowing when I'm so sick I can't function as opposed to normal drained sick but semi functional counting "spoons" etc. I. Looked. AWFUL!!! He was all "NOW you look sick!" No, now I look like death warmed over. He took all the kids with only minor complaint from me (he was joking with me after a short nap that wasn't enough, and I got ill, I don't do jokes when I'm sick). By the time I woke up at 10 to eat, I felt like I had mild pneumonia. Again, every symptom except I didn't know my temp and the only gastro symptoms I had were nausea, none of the other gastro symptoms. Everything hurt. My legs and arms, my back was in major pain, my chest hurt when I breathed deep or stretched. It hurt to breathe. You know how your lungs feel when you inhale pool water and cough it back up, how it feels after that? That's how it felt. I had a killer migraine. My whole neck was completely stiff. I was in soooo much pain it isn't even funny. I came close to going to the ER because of the rapid onset of symptoms and the pain. If it has been even a fraction worse, I'd have gone. As it is, I text mom well after her bed time (she told me to go to ER) and woke Big Daddy up. Of course he'd rather sleep so he left it in my hands and I'd rather not hear him complain so he said if I still felt bad in the morning he'd call in. And went back to sleep.

JSmiley was still awake but the pain was so bad I couldn't move much less focus on getting her to sleep so I got up and took a half dose of liquid Tylenol cold (only half because it was the night time formula and J was still up) and a full dose of gabapentin. By the time Big Daddy got up, I felt marginally better. Today I slept a lot again but the symptoms were FAAAR less. Less than normal sinusitis even. Talk about whiplash.

But some symptoms leaked through occasionally. A spasm here and there mainly. But as midnight approached, the pain gradually started to return. By 1:30 (24 hours after taking all those meds) the headache was approaching painful and the neck stiffness was returning. So I took more gabapentin. But now I'm worried that my symptoms are severe and the drugs are masking it which keeps me complacent and at home. I think tomorrow I'll forgo gabapentin and Tylenol cold and see if the pain comes back. If it does I'm going in. Yes medicated the pain is pretty much GONE but unmedicated it's close to excruciating. Even now, a couple hours aftee taking it the pain isn't completely gone. Maybe because I just took the gabapentin and not both but still. More later. J is finally asleep.

Saturday, September 1, 2012


I hate nurse practitioners. I've had 1 good experience with a NP in the history of ever. I'll go ahead and warn you, this is not a sunshine and rainbows post. I'm pissed and I cuss a lot.

The one I saw, I seriously wanted to hit. She didn't even mention the NCS and acted like 95% of my issues are completely my fault. I'm livid. She said my heart rate is still fluctuating and I'm still dizzy because I need to STOP drinking caffeine all together (so my fault), drink 2 additional liters of fluid (my fault), exercise more BUT NO MORE THAN 5 MINUTES (wtf will that help? My fault). The narcolepsy she said to stop drinking ANYTHING even REMOTELY sweet after 4 and no eating AT ALL after 6 and that'll make my narcolepsy better. Uh yeah dumb ass except I drink caffeine BECAUSE I CAN'T STAY THE FUCK AWAKE. How will cutting it out completely keep me awake during the day? Fucking dumb ass. I KNOW I could eat/drink better but it is NOT the cause of my problems. In fact, the week I passed out 3 times, I barely ate and didn't have ANY caffeine AT FUCKING ALL. (Stomach virus). Fuck. The WHOLE appointment I was made to feel like it was completely my fault that I'm sick.

According to her, the ONLY changes I need are more fluids, better eating (which is exactly opposite of the add salt), compression thigh highs, no caffeine and to undo the deconditioning, and added 1 extra.dose of midodrine. Apparently that will cure ALL my heart issues. She did say she'd ask Dr. M if it'd be ok to try a really low trial dose of provigil to see if it would mess with my hr but that was the ONLY concession. I'm fucking tired of people acting like it's my fault or that I'm making it up or that it's something else. I'm PISSED. So FUCKING pissed. Omg.

I really really REALLY wanted to go off on her. I didn't just blindly take it. I stood up for myself but still, EVERYTHING was blamed on me. Ugh. I'm too pissed to continue and this was 12 hours ago. I think I'm going to request NO nurse practitioners for all my doctors (my appointment SAID Dr. M) and try to get in before 3 months. A, her changes were stupid, B, the whole point of a 1 month appt was to see if it was helping and it's not and her changes were stupid, C, I'm pissed.


Not helping. Fmlfmlfml