Last year, at this time, it was the October snowstorm. Power was out for a week. There wasn't a ton of snow, but all the leaves were still on the trees, and the snow made trees fall EVERYWHERE.
This year, we have Hurricane Sandy heading our way. It's not suppose to be as bad at the snowstorm last year, but still a likelihood to loose power and what not.
In preparation, I've filled my gas tank, and am baking all sorts of goodies to eat if I can't actually cook. I also postponed a shipment of medication in case the power goes out. There's no point in getting it if I don't have power to refrigerate it. I have tonight's dose, and then they'll call me back on Tuesday to schedule the rest.
It's also been a year since my mom died. The technical anniversary is Monday. I miss her, a lot. I guess I always will.
This past week, I went to one of those MS presentations. This one had my doctor as the guest speaker though. That was wicked cool. My doctor really is amazing. I'm really glad she's mine.
Showing posts with label doctor. Show all posts
Showing posts with label doctor. Show all posts
Friday, October 26, 2012
Saturday, July 7, 2012
Mostly good news!
I did have lesions on the thoracic mri, but that had never been done before, so she doesn't know how they compare to a year ago. I guess my recent symptoms have been things that would be in that area though, so she wasn't really surprised.
She need mention that she was going to do a blood test to see if I had a different kind of MS. I only know about the 4 main types, and didn't even know there was something else. I don't remember what she called it, so I can't look it up. I also didn't know there was a blood test for any kind of MS. I figure though, its results come back pointing to something else, she'll tell me.
Wednesday, July 4, 2012
beat the heat - in a pool :)
It was a great 4th of July. I'm far too exhausted for fireworks this evening, but all in all, it was a great day. I'm dogsitting at the house with a pool, and a couple of friends came over. We grilled, we swam, got lots of sun. It was a great day!
I'm slightly sunburned now. Here's the thing - I often get a little pink when I spend an extended amount of time in a bathing suit. Mostly, my upper arms and back, where tshirts normally cover. Anyway, I've noticed this summer, that when I am sunburned, I feel so good. I mean, the sunburn itself isn't nice, but health wise - I feel better than I have in a long time.
When I'm hot, there are issues, but once I cool down, it's like I don't have MS anymore. Vision is fine, I'm not dizzy and most especially, my emotional state is excellent. I don't know if that is normal for MS, but for me it is.
I have a doctors appointment tomorrow. I'm a little nervous since its the followup from the 3 MRI's. These are the first ones done since I was diagnosed. I'll find out if there are more leisons or if they are bigger. I know that whatever it is, it is, and it doesn't directly relate to what symptoms I have, but I'm still nervous.
I'm also seeing my therapist tomorrow, for the first time in a while. One week I couldn't go, then she was on vacation, so basically, I've had 3 therapy-free weeks. I'm not gonna lie. I kind of liked that. But tomorrow will be good, especially if I get bad news tomorrow from the neurologist.
I'm slightly sunburned now. Here's the thing - I often get a little pink when I spend an extended amount of time in a bathing suit. Mostly, my upper arms and back, where tshirts normally cover. Anyway, I've noticed this summer, that when I am sunburned, I feel so good. I mean, the sunburn itself isn't nice, but health wise - I feel better than I have in a long time.
When I'm hot, there are issues, but once I cool down, it's like I don't have MS anymore. Vision is fine, I'm not dizzy and most especially, my emotional state is excellent. I don't know if that is normal for MS, but for me it is.
I have a doctors appointment tomorrow. I'm a little nervous since its the followup from the 3 MRI's. These are the first ones done since I was diagnosed. I'll find out if there are more leisons or if they are bigger. I know that whatever it is, it is, and it doesn't directly relate to what symptoms I have, but I'm still nervous.
I'm also seeing my therapist tomorrow, for the first time in a while. One week I couldn't go, then she was on vacation, so basically, I've had 3 therapy-free weeks. I'm not gonna lie. I kind of liked that. But tomorrow will be good, especially if I get bad news tomorrow from the neurologist.
Monday, February 20, 2012
I don't know if I'll make it, but watch how good I'll fake it
Ugh, my back is hurting again. I really think its something MS related, but my doctor does not. I'm gonna trust her. But its annoying.
So, I did make my doctor laugh when I was there last week. I'm a pretty funny person (if I do say so myself). I tend to crack jokes randomly in conversations with everyone. I'm not obnixious about it, just enough to make someone smile.
I say whatever I think when I'm talking to her and usually, she doesn't acknowledge it. I'm not sure if she just doesn't find me funny or doesn't get that I'm making a joke.
Anyway, last time I was there, I told her about how great I was feeling mentally since starting the Zoloft.
I told her, "You said it would take two weeks to work....well, I felt better in like 10 minutes."
That's when she laughed. I also told her though that about a month after I started it, I felt really good. I feel like I did before I had MS. I feel like I can get through a day and get done what I need to get done.
Now, my legs are driving me nutty. When I was little, my best friends older brother used to pull off my barbie's legs and put them back on the wrong side. That's how my leg feels...like it was taken off and put back on backwards.
So, I did make my doctor laugh when I was there last week. I'm a pretty funny person (if I do say so myself). I tend to crack jokes randomly in conversations with everyone. I'm not obnixious about it, just enough to make someone smile.
I say whatever I think when I'm talking to her and usually, she doesn't acknowledge it. I'm not sure if she just doesn't find me funny or doesn't get that I'm making a joke.
Anyway, last time I was there, I told her about how great I was feeling mentally since starting the Zoloft.
I told her, "You said it would take two weeks to work....well, I felt better in like 10 minutes."
That's when she laughed. I also told her though that about a month after I started it, I felt really good. I feel like I did before I had MS. I feel like I can get through a day and get done what I need to get done.
Now, my legs are driving me nutty. When I was little, my best friends older brother used to pull off my barbie's legs and put them back on the wrong side. That's how my leg feels...like it was taken off and put back on backwards.
Thursday, February 16, 2012
Doctors office
I'm waiting at the doctors office. Shes running behind, which is pretty normal for her. I expect it, and know its cause she's so patient. She takes the time she needs with patients. I appreciate that and know that's why she is late. I'm ok with it.
There's this guy here that's being an ass about it. He needs to get over it. Deal. It's a doctors office, of the best neurologist in mass.
There's this guy here that's being an ass about it. He needs to get over it. Deal. It's a doctors office, of the best neurologist in mass.
Thursday, January 5, 2012
Each difficult moment has the potential to open my eyes and open my heart.
I did it. I told my doctor the truth about what was really going on in my head. I didn't think I would. As I was in the waiting room, I kept going over the conversation in my head, but when she called me in, I froze. I planned on just making small talk and leaving.
She asked general, "how are you doing?" questions - I gave general answers. Then, she asked about the Avonex, and that's when I brought it up. I was ridiculously long-winded, which is so the opposite of how I usually am.
As I started talking, I instantly regretted it. At one point, I started thinking about how I could change the story to not actually tell the truth, but I did it anyway. I kept talking, and told how I was honestly feeling. I probably didn't make a lot of eye contact, since I didn't want to tell her the whole truth anyway.
And she didn't look at me like I was nuts, didn't judge me or anything. She just kept asking questions. She isn't sure if its life, or because of the Avonex. She started me on some antidepressants. If I feel better on them, then its life that is making me feel the way I am. If I don't feel better, its the Avonex and she is going to start Gilenya or Copaxone.
I'm not certain how I feel about that, but I love the fact that she just knows what to do. She doesn't think I'm crazy, she didn't judge me, she just knew what to do.
I feel such a sense of relief after talking to her...and the social worker at the MS center. I feel like saying it out loud was a huge step. I haven't said it to a single person in real life and today I did, and dang, just that has made a huge difference.
Next step tomorrow is to find a therapist. Talking about it only helps.
She asked general, "how are you doing?" questions - I gave general answers. Then, she asked about the Avonex, and that's when I brought it up. I was ridiculously long-winded, which is so the opposite of how I usually am.
As I started talking, I instantly regretted it. At one point, I started thinking about how I could change the story to not actually tell the truth, but I did it anyway. I kept talking, and told how I was honestly feeling. I probably didn't make a lot of eye contact, since I didn't want to tell her the whole truth anyway.
And she didn't look at me like I was nuts, didn't judge me or anything. She just kept asking questions. She isn't sure if its life, or because of the Avonex. She started me on some antidepressants. If I feel better on them, then its life that is making me feel the way I am. If I don't feel better, its the Avonex and she is going to start Gilenya or Copaxone.
I'm not certain how I feel about that, but I love the fact that she just knows what to do. She doesn't think I'm crazy, she didn't judge me, she just knew what to do.
I feel such a sense of relief after talking to her...and the social worker at the MS center. I feel like saying it out loud was a huge step. I haven't said it to a single person in real life and today I did, and dang, just that has made a huge difference.
Next step tomorrow is to find a therapist. Talking about it only helps.
Monday, January 2, 2012
to tell or not to tell...
So, I'm questioning my mental health again. I guess I'm always wondering about, or at least trying to see where I am. But lately, I know it hasn't been good. I've been preoccupied with negative thoughts, feelings, emotions. Lots of feeling sorry for myself type of thoughts, which never lead to anything good. Yesterday, I was reading about an event happening next fall. Without even realizing, I thought, "oh, I'll have killed myself by then." WHAT??
That's just crazy. I've thought about wanting to die, but not seriously, and certainly no plan or timeline. I'm really not sure where that thought came from, but it was definitly a wake-up call.
The good news is that I'm going to see my doctor this week. The question is, Do I tell her, and how much do I tell?
I'm notorious for not giving all the pertinent information. I'm quite happy to just let folks think all is good, but really, inside I'm a wreck.
I imagine that if I really tell her what's going on, she'll suggest I see a therapist (which isn't a bad idea, and I plan to find one around here). I also think she might take me off Avonex....I was reading their little literature, and it said if I had thoughts of suicide or depression I should tell my doctor immediately. They may decide to stop treatment.
For some reason, that makes me feel like a failure. Stopping the treatment seems bad. I don't even know if its the treatment that is making me feel so messed up.
I know, its life that is really happening. I wonder if MS and Avonex are just making it worse? That is an excellent question for the doctor, and yet, I know I'm going to try to avoid telling her.
When I get there, there will be this little questionaire to fill out. A list of symptoms and check boxes....you check if things are better, the same or worse and its a good way for the doctor to know what to talk to you about.
I can just picture myself checking the same for everything, when in reality, I should check worse. Oh heavenly being, grant me the ability to bring up what is really going on.
That's just crazy. I've thought about wanting to die, but not seriously, and certainly no plan or timeline. I'm really not sure where that thought came from, but it was definitly a wake-up call.
The good news is that I'm going to see my doctor this week. The question is, Do I tell her, and how much do I tell?
I'm notorious for not giving all the pertinent information. I'm quite happy to just let folks think all is good, but really, inside I'm a wreck.
I imagine that if I really tell her what's going on, she'll suggest I see a therapist (which isn't a bad idea, and I plan to find one around here). I also think she might take me off Avonex....I was reading their little literature, and it said if I had thoughts of suicide or depression I should tell my doctor immediately. They may decide to stop treatment.
For some reason, that makes me feel like a failure. Stopping the treatment seems bad. I don't even know if its the treatment that is making me feel so messed up.
I know, its life that is really happening. I wonder if MS and Avonex are just making it worse? That is an excellent question for the doctor, and yet, I know I'm going to try to avoid telling her.
When I get there, there will be this little questionaire to fill out. A list of symptoms and check boxes....you check if things are better, the same or worse and its a good way for the doctor to know what to talk to you about.
I can just picture myself checking the same for everything, when in reality, I should check worse. Oh heavenly being, grant me the ability to bring up what is really going on.
Friday, December 30, 2011
near tragedy
So, I canceled my neurologist's appointment last month, becuase my new insurance company said I needed a referral from my PCP. My new PCP would not see me until she got my records from my old PCP, so I canceled that neuro appointment and scheduled a new one for this month.
They called yesterday to remind me that I had the appointment. I called the PCP again, who still hasn't gotten the records. I was hopeful and called the insurance company to see if they could waive the need for that referral.
Happily, I found out that if she was in-network, I didn't need one anymore. Great news! But, the story doesn't end there. They looked her up and said she was not in network. GASP!
I asked before I took this job, as her being covered by my new insurance was part of my decision in taking the job. When I called her office, they said she was covered by this insurance.
I call back the insurance company. She looks again and says, nope, not one of our doctors. However, Dr. Bell, who is in the same office as her is one of them. That makes NO SENSE to me. I'm babbling about how illogical I think that is while she looks up Dr. Dayaw by address and finds her.
She says, "Oh, I've got her, she's covered, but her name is not Dr. Dayaw." Now, I realize, this woman has many names, but I am 100% confident that Dr. Dayaw is the name she should be known by with insurance companies.
Her full name is Dr. Maria Pilar Elisa Tejada Dayaw. Her business cards have random initials in there instead of the actual names, and the people who know her well from the MS support group call her Lisa, but basically, her name to me is Dr. Dayaw.
The insurance company says her name is Dr. Pilar. Dr. Maria Pilar. That's wrong, and I know that. They read her whole name though, and its definitly her. That, and there is no Dr. Pilar in her office.
Thankfully, all is set and I can see her next week. Phew.
They called yesterday to remind me that I had the appointment. I called the PCP again, who still hasn't gotten the records. I was hopeful and called the insurance company to see if they could waive the need for that referral.
Happily, I found out that if she was in-network, I didn't need one anymore. Great news! But, the story doesn't end there. They looked her up and said she was not in network. GASP!
I asked before I took this job, as her being covered by my new insurance was part of my decision in taking the job. When I called her office, they said she was covered by this insurance.
I call back the insurance company. She looks again and says, nope, not one of our doctors. However, Dr. Bell, who is in the same office as her is one of them. That makes NO SENSE to me. I'm babbling about how illogical I think that is while she looks up Dr. Dayaw by address and finds her.
She says, "Oh, I've got her, she's covered, but her name is not Dr. Dayaw." Now, I realize, this woman has many names, but I am 100% confident that Dr. Dayaw is the name she should be known by with insurance companies.
Her full name is Dr. Maria Pilar Elisa Tejada Dayaw. Her business cards have random initials in there instead of the actual names, and the people who know her well from the MS support group call her Lisa, but basically, her name to me is Dr. Dayaw.
The insurance company says her name is Dr. Pilar. Dr. Maria Pilar. That's wrong, and I know that. They read her whole name though, and its definitly her. That, and there is no Dr. Pilar in her office.
Thankfully, all is set and I can see her next week. Phew.
Tuesday, December 6, 2011
Heat
So, we all know heat makes MS worse. Last night I learned that also applied to having a fever.
That's logical, although I didn't think of it when I went to the ER. I had a low grade fever. I went to sleep. I woke up and couldn't see. Everything was blurry. I was ridiculously scared.
Turns out I didn't need to be. It was just the heat from the fever.
I feel very stupid really. I know I am meant to wait 24 hours of symptoms. I know much better..I shouldn't have gotten so scared.
On another note, the ER doc had an eye chart app for his phone. It made me think doctors must have the coolest apps.
That's logical, although I didn't think of it when I went to the ER. I had a low grade fever. I went to sleep. I woke up and couldn't see. Everything was blurry. I was ridiculously scared.
Turns out I didn't need to be. It was just the heat from the fever.
I feel very stupid really. I know I am meant to wait 24 hours of symptoms. I know much better..I shouldn't have gotten so scared.
On another note, the ER doc had an eye chart app for his phone. It made me think doctors must have the coolest apps.
Tuesday, November 29, 2011
Resolved
My new job came with new insurance. They said they didn't cover Avonex. I had to use Rebief. I don't have anything against this other drug, I'm just used to Avonex now.
Today, I was on the phone with the new specialty pharmacy working on the order. He said, "Your case is on stage 6. You've done most of the work already."
Actually, I did very little work. I called my doctor's office. That's about it. They are BRILLANT. I'm fairly certain it was entirely them that made it happen so quickly! Dr. Dayaw is brillant and the staff there are so efficient.
I had an appointment to see her in December at the MS Center, but canceled it today. The new insurance company also requires me to get a referral to see her, but the new primary will not accept me as a patient until they get my medical records from my previous doctor, and I imagine that will take longer than getting to her appointment. I canceled it today with hopes that someone else can still get into that appointment. And I resheduled for January, so it's all good.
Today, I was on the phone with the new specialty pharmacy working on the order. He said, "Your case is on stage 6. You've done most of the work already."
Actually, I did very little work. I called my doctor's office. That's about it. They are BRILLANT. I'm fairly certain it was entirely them that made it happen so quickly! Dr. Dayaw is brillant and the staff there are so efficient.
I had an appointment to see her in December at the MS Center, but canceled it today. The new insurance company also requires me to get a referral to see her, but the new primary will not accept me as a patient until they get my medical records from my previous doctor, and I imagine that will take longer than getting to her appointment. I canceled it today with hopes that someone else can still get into that appointment. And I resheduled for January, so it's all good.
Wednesday, September 14, 2011
Funny how that happens
I had my support group tonight. There was a woman there who could have been me in 10 years if my life didn't happen the way it did. She refused to take any DMDs, didn't trust her neurologist, and wasn't completely certain she had MS. Her rational was that they tested her for so many things and finally settled on MS.
My thinking is that they ruled out other possibilities to figure out what it was.
But had I not moved out here, went to this MS center, met Kay and Dr. Dayaw, I totally could have turned into her. That's scary.
Granted, I hate my stupid shot, but I know I'm doing something to make my life better. I'm not fighting treatment or burying my head in the sand. I hope she figures that out too. It's scary and horrible, but the alternative is worse.
My thinking is that they ruled out other possibilities to figure out what it was.
But had I not moved out here, went to this MS center, met Kay and Dr. Dayaw, I totally could have turned into her. That's scary.
Granted, I hate my stupid shot, but I know I'm doing something to make my life better. I'm not fighting treatment or burying my head in the sand. I hope she figures that out too. It's scary and horrible, but the alternative is worse.
Wednesday, August 31, 2011
Irene..you've sure messed with me
I'm so happy to have power, tv and internet back in my life. I have to admit, it was nice to be without these things, as all I did was sleep. Pretty much from when the sun went down. It was very nice to catch up on sleep, but now I'm happy to catch up on facebook, blogs, twitter, news....all those happy things.
I did loose 2 doses of Avonex in the power failure. That SUCKS, but good news is that Avonex will replace them. There was 3 in the box, but one will still be fine for me to take this weekend, so it's just two.
I've missed blogging, but thankfully, I've had little to blog about. I feel well, except for this disc in the back thing. I have an appointment with my doc and nurse tomorrow at the MS center. I'm super excited to go there and tell them things are good.
I did loose 2 doses of Avonex in the power failure. That SUCKS, but good news is that Avonex will replace them. There was 3 in the box, but one will still be fine for me to take this weekend, so it's just two.
I've missed blogging, but thankfully, I've had little to blog about. I feel well, except for this disc in the back thing. I have an appointment with my doc and nurse tomorrow at the MS center. I'm super excited to go there and tell them things are good.
Monday, August 22, 2011
It's not in my head....the pain is real
The MRI came back today and I have lumbar degenerative disc disease. Well, at least that's what my online chart says. She called it something that sounded much less bad, but I can't remember what all the words were. Basically, there is a disc out of place.
So, it's real. They've referred me to a "pain doctor." Like seriously, that's what he is. I feel like that makes me sound like a druggie seeking pills. Apparently though, he is the right kind of doctor. He may try to fix it using steriod shots. I'm not sure about that. This all started when I was on IV steriods.
The more I think about it - the more done I am ready to be with freaken doctors. It's ridiculous! None of this happened before I got MS and started this doctor malarky.
So, it's real. They've referred me to a "pain doctor." Like seriously, that's what he is. I feel like that makes me sound like a druggie seeking pills. Apparently though, he is the right kind of doctor. He may try to fix it using steriod shots. I'm not sure about that. This all started when I was on IV steriods.
The more I think about it - the more done I am ready to be with freaken doctors. It's ridiculous! None of this happened before I got MS and started this doctor malarky.
Tuesday, August 16, 2011
doctor update
I still have this stupid back pain. I wish I knew what it was. The CT Scan shows no kidney stones. It does show gall stones, but the kind of pain I have does not match gall stone pain. Where does that get me?
No one seems to know. My PCP didn't know and questioned if it was neurological. The urologist said it wasn't urological and probably neurological. My next step was to call my neuro.
I called Friday. She wasn't in. I explained to the receptionist (the one who is BRILLANT at getting radiology appointments scheduled) what was going on, that the other doctors thought it was neuro and that the primary doc was scheduling an MRI over the weekend. We left the conversation saying that I would call back Monday when I knew the results of that MRI.
Well, the primary's office is not nearly as brillant as the neuro's office at scheduling those radiology things. It didn't get done and so I had no MRI over the weekend. I didn't call the neuro Monday, since I had no results to share with her and I kinda felt like either it wasn't neuro, or if it was, there was nothing she could do about it anyway.
Monday afternoon Becky calls me. She said Dr. Dayaw wanted to see me tomorrow. I explained that I hadn't had the MRI done and had no results to share. She put me on hold while she went to ask the doctor. She came back and said, "nope, she wants to see you first thing in the morning."
"Am I dying?" was my question. Why on earth does she want to see me first thing in the morning. I read lots of posts online from people who have so much trouble seeing their neurologist. So why on earth is mine calling me and wanting to see me so quickly.
She said no, thankfully. But nonetheless, the Dr. Dayaw wanted to see me the next morning. "I have an 8:00 available," she says.
"No, I can't do 8:00. At 8:00 I have 700 children arriving."
"Ok, I have 3:00 available."
"No, at 3:00 I have 700 children leaving."
"How about 11:00?"
"11 works just fine. I'll be there."
So, I get there at 10:45. The receptionist puts me in the room, but says that the doctor is running behind, so I may have to wait a little while. I'm patient and that's perfecly fine with me. About 30 seconds pass and I the doctor comes in. I am surprised, as it's still not even 11:00.
She wants to know what's going on, and I explain. She checked out where the pain is, which incidently is located at where I believe is my kidney (which explains the urologist). She tells me that it's not neuro pain. Neuro pain is more generalized and not so specific.
Clearly, she is cranky. I'm not positive if she was cranky with me, or with the other doctors for saying they thought it was neuro. I think it was a little of both. Either way, the appointment ended with her telling me that it wasn't neuro and that puts me right back where I started.
She did refer me to another doctor - a neuro urologist. I have NO FREAKEN clue what that specialty means. I figure it must mean she is prett smart. She must also be good, if this doctor recommends her. I called to schedule an appointment and the next available appointment isn't until November. November. Good gravy train. I didn't make the appointment.
First, if I am in this pain from now until November, I reckon its possible I will go crazy. Second, I did see a urologist - even if it wasn't a neuro urologist. He cleared me, and in the process did some crazy tests. I'm not really a big fan of being subject to those crazy tests again just so some other doctor can come up with the same conclusion. It's not urological.
Except it feels like it is, and maybe I will just schedule that appointment after all.
No one seems to know. My PCP didn't know and questioned if it was neurological. The urologist said it wasn't urological and probably neurological. My next step was to call my neuro.
I called Friday. She wasn't in. I explained to the receptionist (the one who is BRILLANT at getting radiology appointments scheduled) what was going on, that the other doctors thought it was neuro and that the primary doc was scheduling an MRI over the weekend. We left the conversation saying that I would call back Monday when I knew the results of that MRI.
Well, the primary's office is not nearly as brillant as the neuro's office at scheduling those radiology things. It didn't get done and so I had no MRI over the weekend. I didn't call the neuro Monday, since I had no results to share with her and I kinda felt like either it wasn't neuro, or if it was, there was nothing she could do about it anyway.
Monday afternoon Becky calls me. She said Dr. Dayaw wanted to see me tomorrow. I explained that I hadn't had the MRI done and had no results to share. She put me on hold while she went to ask the doctor. She came back and said, "nope, she wants to see you first thing in the morning."
"Am I dying?" was my question. Why on earth does she want to see me first thing in the morning. I read lots of posts online from people who have so much trouble seeing their neurologist. So why on earth is mine calling me and wanting to see me so quickly.
She said no, thankfully. But nonetheless, the Dr. Dayaw wanted to see me the next morning. "I have an 8:00 available," she says.
"No, I can't do 8:00. At 8:00 I have 700 children arriving."
"Ok, I have 3:00 available."
"No, at 3:00 I have 700 children leaving."
"How about 11:00?"
"11 works just fine. I'll be there."
So, I get there at 10:45. The receptionist puts me in the room, but says that the doctor is running behind, so I may have to wait a little while. I'm patient and that's perfecly fine with me. About 30 seconds pass and I the doctor comes in. I am surprised, as it's still not even 11:00.
She wants to know what's going on, and I explain. She checked out where the pain is, which incidently is located at where I believe is my kidney (which explains the urologist). She tells me that it's not neuro pain. Neuro pain is more generalized and not so specific.
Clearly, she is cranky. I'm not positive if she was cranky with me, or with the other doctors for saying they thought it was neuro. I think it was a little of both. Either way, the appointment ended with her telling me that it wasn't neuro and that puts me right back where I started.
She did refer me to another doctor - a neuro urologist. I have NO FREAKEN clue what that specialty means. I figure it must mean she is prett smart. She must also be good, if this doctor recommends her. I called to schedule an appointment and the next available appointment isn't until November. November. Good gravy train. I didn't make the appointment.
First, if I am in this pain from now until November, I reckon its possible I will go crazy. Second, I did see a urologist - even if it wasn't a neuro urologist. He cleared me, and in the process did some crazy tests. I'm not really a big fan of being subject to those crazy tests again just so some other doctor can come up with the same conclusion. It's not urological.
Except it feels like it is, and maybe I will just schedule that appointment after all.
Friday, July 22, 2011
Satan called. He'd like his weather back.
Phew. It's horrible out. I think it got up to 106 today, with a heat index higher than that.
Now I have MS, and that offers its own unique set of challenges. But that was not even important to me today. The safety and wellness of 700 children and 200 staff was much more important. Were the counselors making sure the kids drank enough water? Were the counselors drinking enough water? Were they too hot? Would the counselors know what to look for if someone was having a heat emergency?
It was a rough day. I'm happy to report, everyone left alive, including me.
Now, onto me. I've been very proud of myself this week. It's been hotter than haities this week and I've done ok. I still think I'm having a relapse, because even when I am home and cool, it's still the same, but it's been stable.
I haven't called the doctor, since I know how the conversation will go:
Dr. Dayaw "I think you're having a relapse and should be admitted to the hospital for a few days."
Me: "No, I can't do that, I have to work."
Dr. D: "Ok, then we'll schedule a round of steriods at the infusion place."
Me: "No, I can't get there either. I work from early morning until late at night."
Dr. *eye roll* "Then what are you doing here?"
Me: "I don't know, I was just scared."
That would sound so stupid. I decided I wasn't going to call her until I had an answer that sounded even remotely intelligent. That didn't happen, so I never called. That made me quite happy. I did imagine her to have an answer that included, "oh look, I have this one little magic pill that will completely cure your MS right away." Since that wasn't very likely, I didn't call.
Now I have MS, and that offers its own unique set of challenges. But that was not even important to me today. The safety and wellness of 700 children and 200 staff was much more important. Were the counselors making sure the kids drank enough water? Were the counselors drinking enough water? Were they too hot? Would the counselors know what to look for if someone was having a heat emergency?
It was a rough day. I'm happy to report, everyone left alive, including me.
Now, onto me. I've been very proud of myself this week. It's been hotter than haities this week and I've done ok. I still think I'm having a relapse, because even when I am home and cool, it's still the same, but it's been stable.
I haven't called the doctor, since I know how the conversation will go:
Dr. Dayaw "I think you're having a relapse and should be admitted to the hospital for a few days."
Me: "No, I can't do that, I have to work."
Dr. D: "Ok, then we'll schedule a round of steriods at the infusion place."
Me: "No, I can't get there either. I work from early morning until late at night."
Dr. *eye roll* "Then what are you doing here?"
Me: "I don't know, I was just scared."
That would sound so stupid. I decided I wasn't going to call her until I had an answer that sounded even remotely intelligent. That didn't happen, so I never called. That made me quite happy. I did imagine her to have an answer that included, "oh look, I have this one little magic pill that will completely cure your MS right away." Since that wasn't very likely, I didn't call.
Monday, July 18, 2011
I give up. I call uncle. I've gone to the dogs. I'm a lost ball in high weeds. I'm as useful as a chocolate teapot. I've at my wits' end.
I'm all of these things and then some. I think this is the beginning of a relapse. It started with dizziness....constant and nothing relieved it. I could deal. It wasn't so bad. I was annoyed, but was happy to just deal.
Then this afternoon, my vision has been affected. I can't see to the left when I first look that way. It takes like 5 to 10 seconds before I can actually make out the pictures. I'm so very afraid that it's only going to get worse and not get better.
I called the doctor, and then instantly regretted it. I don't want to be one of those people that calls the doctor for every little thing. I guess though, this isn't a little thing. It still annoys me that I am so dependent on her. I want to be independent, and one of those people that sees the doctor every 6 months or a year, or whatever is the recommended amount of time between neurologist visits. But, I'm not. I feel safer when she knows what is going on.
Anyway, she ordered some blood work. I went and had it done. They will know the results tomorrow. I'm hoping its something else, anything other than a relapse. I don't have time for that right now.
I'm all of these things and then some. I think this is the beginning of a relapse. It started with dizziness....constant and nothing relieved it. I could deal. It wasn't so bad. I was annoyed, but was happy to just deal.
Then this afternoon, my vision has been affected. I can't see to the left when I first look that way. It takes like 5 to 10 seconds before I can actually make out the pictures. I'm so very afraid that it's only going to get worse and not get better.
I called the doctor, and then instantly regretted it. I don't want to be one of those people that calls the doctor for every little thing. I guess though, this isn't a little thing. It still annoys me that I am so dependent on her. I want to be independent, and one of those people that sees the doctor every 6 months or a year, or whatever is the recommended amount of time between neurologist visits. But, I'm not. I feel safer when she knows what is going on.
Anyway, she ordered some blood work. I went and had it done. They will know the results tomorrow. I'm hoping its something else, anything other than a relapse. I don't have time for that right now.
Monday, July 4, 2011
headache
Oh my god...I have the worst headache I've ever had. It started as a dull headache this afternoon and it's only gotten worse as the day progressed. What is causing it?
I just read an article that said MS can cause headaches and migranes. I've never had a migrane but I imagine this is what it feels like. My whole head is in pain....from my jaw up to my temples. I feel like it's possible that my brains will start oozing out of my ears. There is so much pressure in there.
http://ms.about.com/od/treatments/a/headache_tx.htm
For a brief moment, I thought about calling the doctor or going to the ER. But I'm not. I need to get through this MS thing on my own and not call her for every little thing. But dang, it hurts a LOT.
I just read an article that said MS can cause headaches and migranes. I've never had a migrane but I imagine this is what it feels like. My whole head is in pain....from my jaw up to my temples. I feel like it's possible that my brains will start oozing out of my ears. There is so much pressure in there.
http://ms.about.com/od/treatments/a/headache_tx.htm
For a brief moment, I thought about calling the doctor or going to the ER. But I'm not. I need to get through this MS thing on my own and not call her for every little thing. But dang, it hurts a LOT.
Wednesday, June 29, 2011
tomorrow is going to be hell
I went to the doctor. I'm not really sure what she thinks, but she has ordered an eeg. But one where I am meant to be sleep depreived. Which is not really a big deal, as I'm pretty much always sleep depreived in the summer anyway.
Except that included in the instructions is that I can't have any stimulants for the 24 hours preceeding this thing. That includes cigarettes and caffeine. Those are two of my most favorite things.
My doctor just said she was doing this sort of study since if she did the other and it came back with no seizure activity, she would end up doing this kind....so she is just starting with this one.
Now, here's my thoughts - I'm not sure what I want it to find out. If it finds out that I do have seizures, well that's bad. If it finds out that I don't, well then, I still don't know what happened to me last week.
Except that included in the instructions is that I can't have any stimulants for the 24 hours preceeding this thing. That includes cigarettes and caffeine. Those are two of my most favorite things.
My doctor just said she was doing this sort of study since if she did the other and it came back with no seizure activity, she would end up doing this kind....so she is just starting with this one.
Now, here's my thoughts - I'm not sure what I want it to find out. If it finds out that I do have seizures, well that's bad. If it finds out that I don't, well then, I still don't know what happened to me last week.
Monday, June 27, 2011
letters
Dear Doctor,
Please decide that I did not in fact have a seizure and defintily do not decide to take my license away for 3 months. That would really cramp my style. Thank you.
Please decide that I did not in fact have a seizure and defintily do not decide to take my license away for 3 months. That would really cramp my style. Thank you.
Sunday, June 26, 2011
a crazy week followed by the ER
So the week has been insane. I've slept very little, ate very little, worked a lot and was doing it. I was tired, but all was pretty good. Until yesterday. Yesterday I was at work at 4 am. A little after 5, I got up to go get something and the next thing I remember is that I was on the floor. I felt so groggy and awful and it took me forver to figure out where I was and what happened.
I really had no idea what happened. In one way or another I passed out. What I'm not sure about is whether or not I had a seizure. The only thing that made me wonder if I had a seizure was that I bit my lip. Either way, something bad happened. And it took me forever to come to.
There wasn't much I could do about it. It was the open house at my camp and I wasn't leaving fo it. My boss was great about....he told me to go, but ddn't argue when I said I wouldn't. I called the doctor and he said I should go as well, and my plan to go after open house.
By time open house was over, I wasn't feeling so great. My vision had changed and I just decided to go to th hospital. The triage nurse said it probably wasn't a seizure, since I hadn't had an accident. The nurse in my room didn't agree with that. The doctor thinks it probably was a seizure since I bit my lip.
There was a bit of a fiasco about leaving. The doctor came in and asked me if I wanted to be admitted. I said no (of course!). He agreed with that as he said if I was admitted, they wanted to monitor my heart and he didn't think it had anything to do with my heart.
Secod, he wanted to know if I wanted a spinal tap to rule out menegenetis. I had the vaccine and so I said no. He was also ok with that. But whent he nurse came to discharge me, she had papers for me to sign that said I was signing out against medical advise.
I couldn't sign those. If I did, then my insurance might not cover the follow up appointments. I told the nurse that and she said she would go tell the doctor I was staying. I was ridiculously bummed. But he came in and said I didn't have to sign...basically he was trying to cover his backside. But I promised I wouldn't sue him.
I really had no idea what happened. In one way or another I passed out. What I'm not sure about is whether or not I had a seizure. The only thing that made me wonder if I had a seizure was that I bit my lip. Either way, something bad happened. And it took me forever to come to.
There wasn't much I could do about it. It was the open house at my camp and I wasn't leaving fo it. My boss was great about....he told me to go, but ddn't argue when I said I wouldn't. I called the doctor and he said I should go as well, and my plan to go after open house.
By time open house was over, I wasn't feeling so great. My vision had changed and I just decided to go to th hospital. The triage nurse said it probably wasn't a seizure, since I hadn't had an accident. The nurse in my room didn't agree with that. The doctor thinks it probably was a seizure since I bit my lip.
There was a bit of a fiasco about leaving. The doctor came in and asked me if I wanted to be admitted. I said no (of course!). He agreed with that as he said if I was admitted, they wanted to monitor my heart and he didn't think it had anything to do with my heart.
Secod, he wanted to know if I wanted a spinal tap to rule out menegenetis. I had the vaccine and so I said no. He was also ok with that. But whent he nurse came to discharge me, she had papers for me to sign that said I was signing out against medical advise.
I couldn't sign those. If I did, then my insurance might not cover the follow up appointments. I told the nurse that and she said she would go tell the doctor I was staying. I was ridiculously bummed. But he came in and said I didn't have to sign...basically he was trying to cover his backside. But I promised I wouldn't sue him.
Subscribe to:
Posts (Atom)