a doctor’s appointment today
I had a fun day today – first my Mom came for a visit, then I went straight to my doctor’s appointment. This is my neurologist. THEN my dear sister-in-law came over to make dinner for us and watch a little TV.
So let me tell you about the doctor’s appointment. We didn’t change many things around because I just spoke to my primary care physician. PCP wanted to start me on Neurontin — for my back. I am really hoping this helps. So I start tonight, titrating up.
Ok, back to the neurologist’s appointment. We talked about my recent experiences with Imitrex and Zomig. They aren’t helping much, and I’m having side effects nearly every time I use them – nausea (even with anti-nausea meds) and pain in my joints. Weird. I told her it just didn’t feel like it was worth taking them, so I hadn’t been for the past month or so. So she said that it would be ok for me to take Lortab twice weekly (instead of twice monthly). This is fantastic, because I have hours with Lortab where I actually feel NORMAL. And I could do with more of those.
That’s all she wrote. 
Please read
As I was reading through my blogs today — and as usual, came across some thought-provoking material. Today, it’s something I wanted to share with you and make sure you knew about!
I was reading Somebody Heal Me (musings of a chronic migraineur). Today she reports on the FDA advisory panel that is recommending the removal of acetaminophen based products (such as Lortab, Percocet and Vicodin) from market. Also, extra strengh Tylenol would only be available with a prescription. She goes into more detail regarding the reasons and her concerns. I share many of her concerns. My main concern is selfish — currently, I am allowed two days per month to take Lortab. These two days are the only days I feel normal. Many chronic pain patients are in similar (or even more difficult) situations.
One main concern the FDA advisory panel has is the number of acetaminophen overdose related deaths. Of course this is a problem, and something that should be addressed. Acetaminophen overdose is the most common reason for liver failure in the U.S. I don’t believe that removing the products from market is the answer — I think that better patient education would do the trick.
What pleased me was the link she included for a petition. The petition is called Acetaminophen: Educate, Do not regulate! From their site I take this information:
“The U.S. Food and Drug Administration (FDA) is considering advice from its Advisory Committee that would eliminate all prescription acetaminophen combination medications (like Vicodin, Percocet) and take the 500 mg (extra strength) dose of acetaminophen (the medicine in Tylenol) off store shelves and make it available only by prescription. These changes could negatively affect people suffering from pain who rely on these medicines every day. The FDA must consider all comments received by September 30, 2009 that are submitted to the official docket for this decision. Please sign the petition letter by September 27, 2009 and the American Pain Foundation will submit the petition to the FDA.”
Please, if you agree with this, visit the site and sign the petition. It takes only a few minutes.
Filed under Uncategorized | Comments (4)Invisible Illness Meme
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: migraines and back pain
2. I was diagnosed with it in the year: 2000 and 2009, respectively
3. But I had symptoms since:1986 and 1995, respectively
4. The biggest adjustment I’ve had to make is: doing less – less of everything, and resting more.
5. Most people assume: that migraines are just a bad headache; I think most have never heard of someone having migraines or headaches everyday. (You’re too young to have chronic pain!)
6. The hardest part about mornings are: the pain before I eat and take my breakfast pills.
7. My favorite medical TV show is: House. Not for the medical part of it, but for the humor.
8. A gadget I couldn’t live without is: ice packs and heating pads.
9. The hardest part about nights are: staying asleep.
10. Each day I take __ pills & vitamins. (No comments, please): 18. Many of those are the same pills repeated.
11. Regarding alternative treatments: Ihave tried many and all have failed. I feel alarm bells going off when alternative practitioners ‘know’ they can help me. This hasn’t been the case at all so far.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. I can choose who to tell and who not to, and I can try to look and act as normal as possible. In some ways it seems that visible illnesses are given more credence and are more widely understood. But at some point you have to realize that whatever people think about me or my pain, they can go fly a kite, because I know my body and have to live with it.
13. Regarding working and career: I feel like my life has taken a huge detour — I planned to be a piano teacher after college, and have so far been unable to realize those dreams. It is very difficult to play and would be even more difficult to teach and listen to children playing.
14. People would be surprised to know: I’m not always happy and cheerful. I didn’t choose this life, and I’m just trying to make it through the best I can. Friends and acquaintances are always saying ‘You seem so cheerful, so happy. You never seem down and I forget that you’re in pain.’ It’s just not true. And thankfully my family and closest friends know this. They know I’m not Superwoman, and I”m not trying to be.
15. The hardest thing to accept about my new reality has been: sitting out and waiting and resting. I want to be doing, be in the middle of the action, listening to loud music…you get the idea.
16. Something I never thought I could do with my illness that I did was: …this was the hardest question. I feel like I haven’t turned a major corner yet. But recently, with my back pain, I was pleasantly surprised with how well my driving vacation (to Oregon and CA) went.
17. The commercials about my illness: are annoying and make me wish more real information was being spread, instead of ads for medications. It also makes migraines seem much simpler to treat than it is for some of us.
18. Something I really miss doing since I was diagnosed is: playing the piano for as long as I wanted.
19. It was really hard to have to give up: listening to music as loud as I wanted to. Also, chocolate.
20. A new hobby I have taken up since my diagnosis is: crocheting, making jewelry, and blogging!
21. If I could have one day of feeling normal again I would: play the piano, have a fun dinner with friends, clean, go out dancing and/or to a symphony concert.
22. My illness has taught me: doctors don’t always have the answers, sometimes answers take time, everyone is struggling with different issues — we just don’t always know it.
23. Want to know a secret? One thing people say that gets under my skin is: What do you do? It’s something I just need to ignore, but meeting new people, I hate this part of the process…I have to tell them I’m not going to school, I’m not working, I have these headaches and etc….it just changes the tone of the conversation, and they feel bad for me. So not what I”m after.
24. But I love it when people: hug me. Talk to me about their lives and their loves. Even though I have not a lot going on, I do have some things going on, and I love to talk about books or movies.
25. My favorite motto, scripture, quote that gets me through tough times is: Phil. 4:13, I can do all things through Christ which strengtheneth me.
26. When someone is diagnosed I’d like to tell them: to treat yourself kindly, to watch out for rebound headaches, do research on your own and don’t just listen to what the doctors tell you, there is a lot of comfort to be found from online communities.
27. Something that has surprised me about living with an illness is:how quickly time seems to pass me by.
28. The nicest thing someone did for me when I wasn’t feeling well was: there have been many – times my mother or MIL scrubbed my tub, times family or friends from church brought me meals.
29. I’m involved with Invisible Illness Week because: too often it is assumed that if it can’t be seen it isn’t real, it’s made up or imagined.
30. The fact that you read this list makes me feel: hopeful for the future. I hope people will get a better idea of what it’s like to walk my path and maybe try to learn more about diseases they don’t know about when they encounter them.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
Filed under back pain/problems, blogs, headaches, meme, migraines | Comments (11)Tidbits from Labor Day weekend –
– Friday night Spencer worked late and we rented a Redbox. Low key.
– Saturday night we had a BBQ with most of Spencer’s sibs. It was big fun and Spencer tended the grill (jointly) for the first time.
– Sunday night we had dinner with friends. Love these guys – it is always good food and lots of fun. Wish we still lived in the same town together!
– Monday I went to the Park City outlets with a few sisters-in-law. AND one brave man who accompanied us. Shopping, yes please. Ah how I enjoyed myself. The shops were so busy (since it was Labor Day and all) and vending machines were out of water. Whoa. Finally we happened upon a drinking fountain and I could refill my cutsie bottle. I got Spencer a hoodie and me a tote bag from the Gap. I also got myself two fantastic shirts from Banana Republic. Am looking forward to wearing them.
That is a busy weekend for me. I was bushed yesterday and did nearly nothing.
Onward and upward!
Filed under Uncategorized | Comments (3)A discussion of hot and cold packs
Another step away from vacation coverage. To discuss hot and/or cold packs. I’ve known a few in my day. And of course, there is one that’s risen above the rest. My favorite is this one. I just ordered another, so I don’t have to use the one I have so judiciously.
mmm...icey for my head!
So you can see what it looks like, but let me tell you about how it feels: it sits over the eyes and has an elastic band to hold it on your head. Inside it has what feels like round plastic beads inside a stretchy cotton fabric. One of the best parts of this pack is that there are Xs sewn where your eyes go. This makes it so the weight of the pack isn’t pressing on your eyes while you’re sleeping. Or trying to sleep. Also, it stays cold longer than any of my others. I don’t know why.
I know some people prefer heat for their headaches/migraines. I can’t even stand the thought of it. But tell me — do you like cold or heat – and what’s your favorite pack like?
**P.S. — Did you notice my new widget on the sidebar? It says Spencer’s Photos? That’s a widget my dear husband made, pretty cool right? It can pull photos from whatever site you want. If you are interested in downloading it (and use wordpress), go here. It’s called RSSPhoto.
Filed under Uncategorized | Comments (7)
