This one's gonna be a short entry.
Yesterday I made a visit to a new neurologist. Or new to me- Dr. Achenbach from Allina Cambridge. I was actually going to see her initially but then went to Noran instead since they were listed on the ABDA website.
I'm very happy with my visit yesterday. She actually knows about Behcet's. Really?! Yes, a doctor who knows about Behcet's! Why does she? Because she did a year of internal medicine before neurology and dealt with Behcet's patients at the hospital many times. So good news for me!
She wants me to go off the tramadol as it is known to cause seizures for people who have no risk/reason for developing them. She worded it much better than me of course:) FYI: If you have any neurological problems you should not be on tramadol or wellbutrin since they can cause seizures. There's your medical lesson for the day. She would like me to try butterbur for headaches once I know what's going on with my IV remicade. I am waiting to hear if Allina Partners Care covers in clinic IV remicade since I am without insurance. By the way, how are people suppose to get better without insurance? I'm stuck in a 4 month loop without insurance. Awesome times. Thankfully Allina has a thing called Allina Partners Care which you can see Allina providers and get your visits covered for free. I can't imagine what my bills would be like without this! Fucking ridiculous is what.
Butterbur is suppose to cut headaches by 50%, which would be frickin' awesome! I've been dealing with temporal and occipital headaches for as long as I can remember now. A side note: another medication I can cross off my list for not working is the Zonegran. She said she wouldn't try me on a prescription medication because my Behcet's isn't under control. What I wouldn't give to get the Behcet's under control... I don't even know what under control means anymore. The last time I felt normal was July 2011 when I was on the prednisone. Damn allergies...or damn my body for not tolerating medications... If I don't get on the remicade, then I will try the butterbur. If I get on the remicade then I will hold off on the butterbur.
She also wants me to try a gluten free diet to see if it helps with my inflammation. So I am now going to learn about that. Wish me luck! I know I'm gonna need it. I also need to keep a headache journal. We also rechecked vitamin D and vitamin B level since it's been a year. I think that about sums it up. Hopefully I recalled everything right. And I know this post is all over the place but too bad. Not feeling well enough to make it perfect.
Hope everyone has a wonderful weekend!
"Life is about increasing understanding by expanding our ability to experience new things. New realities, points of view other than the ones familiar to us."~Ken Dyers
As I was typing this up, I heard back from my rheumy's office. I am scheduled for my first Remicade infusion on August 7th, woot woot!
Friday, July 27, 2012
Friday, July 20, 2012
My Ode To Behcet's...
My Ode to Behcet's
Oh Behcet's,
What would I do without you?
I'll tell you what:
Not have to deal with allergies to every medication,
Sleep a good nights sleep,
Not feel like I'm 300 years old,
Enjoy the warm weather instead of dreading it,
Enjoy gardening, walks, even working and cleaning the house!
Live life again...
What do I think of you?
Screw you Behcet's!
My Ode to Behcet's...
(Trust me I could go on for hours of what I'd do without it)
I decided to write this after yet another reaction to a new medication. Last night I finally tried Enbrel. Why did I wait so long to try it you ask? Simple. I haven't been feeling well. I try to wait until I'm feeling somewhat decent before starting a new medication in case I end up having to go the ER. Been there, done that and it's not fun.
So what happened with Enbrel right?
First you need to know Enbrel is an injection. The preferred site is your leg according to the info they sent me. And I've gotten way to much shit from the manufacturer of Enbrel. Way too much. I held the pen and Jason hit the button for me for it to inject. I made it less than 5 seconds. Probably more like 2 seconds. It was a burning pain nothing like I've felt before. The rest of the night I had a burning pain in my leg and nausea that woke me up every 30 minutes. This continued throughout the night, so sleep there was not. I woke up this morning and there is a scab where the injection was given. Needless to say I will be watching the area closely and I can add another medication to my growing list of allergies.
On a completely different note I am very upset about a letter my Behcet's friend received from the doctor. I'm upset for many reasons for this one and cannot say all I want to because I need to keep my friend anonymous. I feel it's important you read this and understand what we go through as someone with chronic pain. I've known druggies before and the person who received this letter is NOT a druggie. Here's the letter.
Dear ***,
I'm sorry to hear that *** had another bad episode of pain. I think we did have a protocol of sorts, it just isn't always sufficient to completely eliminate her/his pain- we talked about using ibuprofen vs. naproxen, and the other measures, but it just isn't enough sometimes. The difficulty is that we really can't do narcotics either- they may distract him/her from the pain since they can give her/him a kind of "high", but it's not appropriate therapy, and it will ultimately lead to him/her becoming dependant on them. In fact, I wonder if she/he is already dependant on them and that's part of the reason why his/her pain keeps coming back. If we wanted to further look at this possibility we could perhaps consider having her/him see an addiction specialist for an evaluation, to help us decide if some amount of narcotic dependence could be playing a role in his/her pain.
Another thought about this particular episode, since she/he has the blurry vision and the nausea is that it seems an awful lot like a migraine and we could try a triptan, such as sumatriptan. I know he's/she's tried it in the past without success, but as long as she's/he's not had a serious side effect from it, it might not hurt to try it again. I will go ahead and order some to the WM pharmacy if you decide you would like to pick it up and give it a try (it's a nasal spray- can use it twice in 24 hours, and should not use it for more than 4 days in a 30 day period).
Another thing we could consider adding to the protocol would be a therapist visit. Perhaps at times like this when she/he gets really bad, myself or Dr. Monroe could try to contact behavioral health about getting him/her seen that day by the behavioral health department so he/she could talk with a therapist about CBT pain management techniques and they can help her/him overcome her/his acute crisis (I mean- in addition to the regular CBT treatments we are setting up, I'm wondering if maybe we can use them as a resource to help with these acute attacks).
I'm sorry everything has been so frustrating, hopefully some of these ideas might help us out. Cheers-
Dr. Roberts
First, I'd like to let you know Dr. Roberts that not everyone gets a "high" as you call it from medications. Second, narcotics, if used as prescribed, the addiction risk is low. Why do I know this? Because I've discussed this with my doctor friends. Third, I hope that you require narcotics some day and they do not give them to you. Maybe you'll be blessed with this disease and can figure out how to manage without pain pills. Fourth, this doctor should be forced to go back to med school and be taught a compassion/caring class. And last, "cheers"? Really? There's nothing cheerful about this letter and maybe you are thinking drinking? Maybe your secret addiction? Perhaps...(think I'm being mean? Too bad, get off my blog)
Yes, this note upsets me because when I my adhesion come back in 2007 I went to MAPS pain clinic in Coon Rapids by my own choice and was treated like a drug addict because I used 30 vicodin every 2 months for my pelvic adhesion pain. (I will go more into it at a later date) So I do understand what it's like to be on the side of needing medications. I also understand the side of dealing with drug seekers- I saw it all too often at the clinics when I was working. I've also worked with doctors who refuse to give narcotics to anyone. I've also worked with doctors who will only give older people narcotics and frown upon the younger people who need it. So what's the solution? Good question. A magic button health care professionals can push that relieves all pain for patients so we don't need medications. Sounds good to me.
So what's my excuse for the monthly posting? It's summer and I've been on my anti-Internet kick. So there:)
"Never forget why you went into the medical profession because some day you may need someone to help take care of you." (Let's hope they went into the field to help others and not for the money, right?) ~Chrissy
Oh Behcet's,
What would I do without you?
I'll tell you what:
Not have to deal with allergies to every medication,
Sleep a good nights sleep,
Not feel like I'm 300 years old,
Enjoy the warm weather instead of dreading it,
Enjoy gardening, walks, even working and cleaning the house!
Live life again...
What do I think of you?
Screw you Behcet's!
My Ode to Behcet's...
(Trust me I could go on for hours of what I'd do without it)
I decided to write this after yet another reaction to a new medication. Last night I finally tried Enbrel. Why did I wait so long to try it you ask? Simple. I haven't been feeling well. I try to wait until I'm feeling somewhat decent before starting a new medication in case I end up having to go the ER. Been there, done that and it's not fun.
So what happened with Enbrel right?
First you need to know Enbrel is an injection. The preferred site is your leg according to the info they sent me. And I've gotten way to much shit from the manufacturer of Enbrel. Way too much. I held the pen and Jason hit the button for me for it to inject. I made it less than 5 seconds. Probably more like 2 seconds. It was a burning pain nothing like I've felt before. The rest of the night I had a burning pain in my leg and nausea that woke me up every 30 minutes. This continued throughout the night, so sleep there was not. I woke up this morning and there is a scab where the injection was given. Needless to say I will be watching the area closely and I can add another medication to my growing list of allergies.
On a completely different note I am very upset about a letter my Behcet's friend received from the doctor. I'm upset for many reasons for this one and cannot say all I want to because I need to keep my friend anonymous. I feel it's important you read this and understand what we go through as someone with chronic pain. I've known druggies before and the person who received this letter is NOT a druggie. Here's the letter.
Dear ***,
I'm sorry to hear that *** had another bad episode of pain. I think we did have a protocol of sorts, it just isn't always sufficient to completely eliminate her/his pain- we talked about using ibuprofen vs. naproxen, and the other measures, but it just isn't enough sometimes. The difficulty is that we really can't do narcotics either- they may distract him/her from the pain since they can give her/him a kind of "high", but it's not appropriate therapy, and it will ultimately lead to him/her becoming dependant on them. In fact, I wonder if she/he is already dependant on them and that's part of the reason why his/her pain keeps coming back. If we wanted to further look at this possibility we could perhaps consider having her/him see an addiction specialist for an evaluation, to help us decide if some amount of narcotic dependence could be playing a role in his/her pain.
Another thought about this particular episode, since she/he has the blurry vision and the nausea is that it seems an awful lot like a migraine and we could try a triptan, such as sumatriptan. I know he's/she's tried it in the past without success, but as long as she's/he's not had a serious side effect from it, it might not hurt to try it again. I will go ahead and order some to the WM pharmacy if you decide you would like to pick it up and give it a try (it's a nasal spray- can use it twice in 24 hours, and should not use it for more than 4 days in a 30 day period).
Another thing we could consider adding to the protocol would be a therapist visit. Perhaps at times like this when she/he gets really bad, myself or Dr. Monroe could try to contact behavioral health about getting him/her seen that day by the behavioral health department so he/she could talk with a therapist about CBT pain management techniques and they can help her/him overcome her/his acute crisis (I mean- in addition to the regular CBT treatments we are setting up, I'm wondering if maybe we can use them as a resource to help with these acute attacks).
I'm sorry everything has been so frustrating, hopefully some of these ideas might help us out. Cheers-
Dr. Roberts
First, I'd like to let you know Dr. Roberts that not everyone gets a "high" as you call it from medications. Second, narcotics, if used as prescribed, the addiction risk is low. Why do I know this? Because I've discussed this with my doctor friends. Third, I hope that you require narcotics some day and they do not give them to you. Maybe you'll be blessed with this disease and can figure out how to manage without pain pills. Fourth, this doctor should be forced to go back to med school and be taught a compassion/caring class. And last, "cheers"? Really? There's nothing cheerful about this letter and maybe you are thinking drinking? Maybe your secret addiction? Perhaps...(think I'm being mean? Too bad, get off my blog)
Yes, this note upsets me because when I my adhesion come back in 2007 I went to MAPS pain clinic in Coon Rapids by my own choice and was treated like a drug addict because I used 30 vicodin every 2 months for my pelvic adhesion pain. (I will go more into it at a later date) So I do understand what it's like to be on the side of needing medications. I also understand the side of dealing with drug seekers- I saw it all too often at the clinics when I was working. I've also worked with doctors who refuse to give narcotics to anyone. I've also worked with doctors who will only give older people narcotics and frown upon the younger people who need it. So what's the solution? Good question. A magic button health care professionals can push that relieves all pain for patients so we don't need medications. Sounds good to me.
So what's my excuse for the monthly posting? It's summer and I've been on my anti-Internet kick. So there:)
"Never forget why you went into the medical profession because some day you may need someone to help take care of you." (Let's hope they went into the field to help others and not for the money, right?) ~Chrissy
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