| Long Winter |
[Apr. 10th, 2005|05:22 pm] |
| [ | Current Mood |
| |  productive | ] |
So I know it's been a very long time since I've updated, but this winter was hellish. I lost about 15 pounds over three months, simply from being unable to eat. I made only one ER trip, but I think it was the worst to date. And now, finally, as the days are getting warmer and I'm able to spend some time in the sun, I'm gradually starting to eat better, again. I'm still throwing up, but maybe one big puking session every other day instead of multiple times a day. And finally, I'm beginning to feel productive again, which is essential to my quality of life. I'm even looking forward to Pesach, instead of dreading the seders and a week where my food choices are even more limited (pasta and breads were all I could eat, when I could, during the winter).
I've been able to eat a few well-cooked vegetables again, and tofu, and I'm able to feel fairly nourished without consuming any meat but seafood. I'm not so reliant on dairy, which is wonderful. I still have to be very careful with my choices, but it's so much easier.
I'm doing bead and wirework lately, to warm myself up for some real silversmithing, which I feel like I need to get started with again. And just for kicks, I'll include a picture of something I recently made:
There's a matching earring, of course, but I only photographed one. |
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| Zofran |
[Jan. 6th, 2005|03:02 am] |
| [ | Current Mood |
| |  okay | ] |
Medicaid isn't seeming so bad, lately. I just got a letter stating that my doctor selection will be active as of the 15th, and when I called to make an appointment, the staff was extremely helpful.
And even better, my GI was able to authorize a 30 Zofran prescription for me, with Medicaid (though, some miscommunication led me to get only 20 today). It turns out that the pharmacist who told me that Medicaid will only pay for 10 each month was wrong--they will pay for only 10 at a time, which means I could have had the meds I needed if I'd gone to the pharmacy every 10 days. I would have gladly done it, but it's nice that I don't have to.
For the first time ever, I took a Zofran today without any hesitation.
With my $3 copay, I saved $688 on 20 Zofran. That should be a pretty good indicator of why I've always hesitated.
See, Chandra? The government is good for something. ;) |
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| One Year. |
[Dec. 19th, 2004|02:40 pm] |
| [ | Current Mood |
| | okay | ] |
Today is my first anniversary with my neurostimulator.
My results are not as dramatic as I'd hoped, I admit. But I have come a long way from last year, and I'm very thankful for the improvements. I have accepted my current limitations, and if I continue to improve, I will gladly adjust.
While much of the time my vomiting frequency is only a few times a week, I still have periods in which I vomit a few times a day. I imagine that my life will remain this way, until new treatments are developed or discovered.
With my medicaid approval, which I recieved about three days after meeting with a caseworker to apply, I am hoping to have access to the medications I need. Medicaid will only pay for ten Zofran ODT each month. My doctor is trying to help me get more. Zofran is the one medication that offers some relief, aside from Darvocet, which I take infrequently. I'm also on Prevacid, which keeps my excess acid in check, therefore reducing my pain from vomiting. And recently, I was prescribed something new, Cytotec, that is supposed to increase my intestinal motility. I've been noticing some small improvement from it, which is fantastic. I haven't been on it long, so I'm looking forward to see how it works out for me.
So, while I often feel that all I do is pop pills all day long, I am willing to do what is necessary to feel as well as I can.
Winter is always hard. After learning from the Johns-Hopkins gastroparesis symposium that seratonin has an effect on GI motility, I may just invest in a sun lamp. |
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| Medicaid. |
[Oct. 28th, 2004|05:18 pm] |
| [ | Current Mood |
| |  annoyed | ] |
I finally submitted an application for Medicaid, on Monday. I am in dire need of health insurance, but the letter I received today reminded me why I haven't begun this process sooner. They scheduled my appointment for 7 a.m. The thing is, I suffer my worst nausea in the morning, because I'm chronically ill, which is why I don't have any income, which is why I couldn't purchase an individual plan with an insurance company even if they *would* accept me, which they won't, which is why I applied for Medicaid.
Interesting, isn't it? I suppose I'll just be taking a bag or something with me to the appointment.
On a positive note, they did respond to my application rather quickly. I wasn't expecting it. |
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| Wow, it's been a long time... |
[Sep. 17th, 2004|01:39 pm] |
| [ | Current Mood |
| |  sick | ] |
I didn't realize that the last time I updated was my birthday.
So, some interesting things have happened since then. I had my 6 month post-op satiety test during month 7, and there is still steady improvement--I drank over 3 oz. The biggest success, however, was with my emptying study. I ate the usual--egg beaters, bread, and water--I was virtually empty in an hour. I have never had a normal emptying study, so that was pretty exciting.
After that, it's pretty frustrating when I lapse. I think, if I'm digesting so well, now, then why do I still get so sick? I still have significant nausea and pain. Some weeks, the vomitting is almost nil, and other weeks (like this one), I vomit excessively.
Yesterday, I was sitting on the couch drinking a soda, and my stomach suddenly seized. I threw up, and the pain intensified. I had to take my zofran-vicodin combo, which is what I use to "control" these episodes, and I hate. I haven't had this happen since I was experimenting with my pacer settings.
I'm currently at default frequency and cycling, and 4.5 volts. The voltage was raised at my last appointment. I certainly hope that I won't have to start experimenting with adjustments, again, but I'm afraid it might be so. |
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| A Happy Birthday |
[May. 22nd, 2004|05:19 pm] |
| [ | Current Mood |
| |  drained | ] |
| [ | Current Book |
| | Kushiel's Dart, Jacqueline Carey | ] |
Today is my birthday, and I took a zofran to celebrate. No wonder I'm happy! I feel pretty good, with only about 30 minutes of mild nausea from my daily protein bar. I really wish I could afford to take zofran regularly. It works wonders for me.
I've been pretty sick all week, though I'm still crazy-stomach-cramp-attack free. I think the only things I ate and kept down this week (besides my daily protein bar) were half a turkey sandwich and some teriyaki chicken and rice. The latter was quite good, too. I'm thinking about having the same thing for dinner this evening.
I decided to change Current Music to Current Book. I haven't been reading as much as normal, lately, but I pick up new books much more often than I pick up new music. |
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| Another adjustment... |
[May. 17th, 2004|11:43 pm] |
| [ | Current Mood |
| | drained | ] |
I had another pacer adjustment last Monday night. All we did was put two of the settings back at the default level. The default cycling is 0.1 seconds on, 5 seconds off, I thought it was 0.5/5. The default frequency is 14 pps. I started going downhill when we started fiddling with the frequency, so I just want to start from scratch. Basically, I've always had these "attacks" where my stomach contracts and will not move. It is excruciatingly painful, and can last for hours (much, much more painful than transition on pitocin, to give you an idea). When they first started occuring early in my illness, I always went to the ER (the first time in an ambulance). I later figured out what was happening, and I realized that if I could force my stomach to move by gagging and vomiting, it would solve the problem. So, for about 3 or 4 years, that's how I handled it. When they were most severe, I had them fairly frequently, up to about twice a month. By the time I figured out how to handle it, they came much, much less frequently. Well, this past week, it happened *three* times, and on top of that, the forced movement made it worse, not better.
In the ER, they give me an IV dose of an anti-nausea (like compazine or zofran) and a painkiller. Thank G-d I had vicodin left over from my surgery, or I would have been in the ER all three times. Since I have both zofran and vicodin, I took them and waited out the 45ish minutes they took to kick in. I told my doc's nurse what had been going on, and she said that vicodin was the right thing to take as the codeine will relax the muscles. After the adjustment, I felt it happening again, but I was pretty nauseous and needed to vomit anyway, and I was able to fend it off. Thank goodness! Even still, I am utterly exhausted and drained from all of it, and in considerable constant pain, so I hope things start looking up soon. |
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| Another Appointment... |
[Apr. 15th, 2004|09:09 pm] |
| [ | Current Mood |
| |  optimistic | ] |
| [ | Current Book |
| | The Chieftans, Bob Marley | ] |
First, I should probably thank Jason for staying on me about calling Dr. Nowak's office to get in for an adjustment. I am really glad I went. Thank you, Jason. (Seriously, I know wouldn't have gone if he hadn't asked me every day if I'd called yet!)
I went in today after never "bouncing back" from my trip to the ER. I've been living on protein bars and milk. The adjustment in frequency seemed to be hindering rather than helping. I've had some issues with bloating again, recently, and I do NOT want to go there, again. Ever.
Dr. Nowak and I had a long chat about my present state. I told him why I was frustrated, that things have been going more poorly than I'd expected at 4 months. I also discussed some of the things I'd learned at the symposium with him, which seemed to interest him. I told him that I was unhappy about taking darvocet that I have left over from my sugery for pain occasionally, and I asked him about the non-narcotic pain medications that are available. He asked me how I did with the darvocet, and I told him it didn't seem to make things any worse. I had just gone on a rant about individualized nutritional needs, so he hit me back with individualized treatment, and told me to stick with the darvocet if it's working and I'm not having trouble with it. He asked me if I was taking one or two a day; I told him that it was more like one or two a week. He seemed amused, and told me he'd give me a script for thirty so I didn't overdo it. So I laughed and agreed.
We discussed acupuncture, and surprisingly, he agreed with me that it's a viable treatment. The only problem was that he couldn't remember the name of the acupuncturist that one of his former patients used to see. So, I'm going to do some research on my own.
When I expressed some uncertainty about my adjustment concerns, he told me, basically, that all we can do is fiddle around with it and see what works. So I went all out today. I had my frequency knocked down to 21 pps, voltage jumped up to 4, and the cycle changed to on two, off three. I didn't realize that it had been at on half a second, off five!
All in all, it was a positive experience. I'm feeling much less disgruntled with my pacer, and my optimism is returning.
And since I've yet to post them here, here are my before and after pictures complete with a brand new one. From top to bottom: less than a week before surgery, two months after surgery, four months after surgery.
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| Very belated update. |
[Mar. 25th, 2004|07:02 pm] |
| [ | Current Mood |
| | sick | ] |
I know it's been a long time since I've updated, but it's mostly because I've been very sick, and I was hoping to update with something positive.
There are some positive things to report, however, so those come first. I had a great stint of about 2 weeks in the middle of March, where I was vomiting minimally and eating much more fiber than usual. I was even able to return to my vegetarian diet during that time.
The other positive news is that I had my three month post-op visit with my GI, and my satiety tests continue to improve. I was able to get down 2 3/5 oz, compared to 2 oz at my 1 month visit. I also had another adjustment to my neurostimulator. I am now receiving 28 pulses/minute, compared 14. At my previous visit, the voltage was increased from 2.7 to 3.5.
I'm happy about these improvements, even with all that has occured around them. I was very sick for the entire month of February, and the beginning of March, throwing up more than usual. However, even with the excessive nausea and vomiting, there have been other noticable changes, such as a dramatic lack of bloating (they didn't even recognize me at the doctor's office), and increased intestinal motility.
Last night, however, I made a trip to the ER. I was severely dehydrated after being unable to keep down food for 4 days, and liquids for 2 days. After three bags of IV fluids, zofran, and compazine, I was able to drink and keep down a very small amount of water, and therefore urinate, which was the only way my doctor was willing to let me leave. If I hadn't been able to urinate, I would have been admitted. I was in the ER for about 6 hours.
I am still very confident that I will continue to improve. It is too early to expect great changes from the neurostimulator, so I'm just doing my best to go with the flow right now. I have a good feeling that everything will take a turn for the better this summer. I'm looking forward to it. |
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| Another hurdle in the dust! |
[Jan. 12th, 2004|08:33 pm] |
| [ | Current Mood |
| |  accomplished | ] |
I was sick all afternoon. I ate some leftover pizza for lunch. By dinnertime, I wanted nothing to do with food.
I decided to eat, anyway, in the end. I was disappointed because I hadn't done my daily exercise beforehand. I had half a chicken salad sandwich and a few bites of french onion soup. It was actually delicious. After I finished, I sat for a moment, trying to sense how I felt. No regurg yet. I jumped on the elliptical trainer. I did my callanetics and stretches. 5 minutes after my workout, the regurg is minimal! I can't believe it! This is unprecedented and I'm so excited.
It's not quite been a month since my pacer was implanted. I really believe that I'm experiencing the beginnings of its effects. I know I'm at the bottom of the hill, but I'm ready to climb. And I can't wait to reach the top. |
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