I never thought I'd say it, but the steroid seems to be helping, at least a little bit. And I haven't had any of the weird mood side effects I used to get. I'm still glad it's only a three-day course.
The Zithromax normally works quickly, and it was having no effect, so it probably isn't a bacteria, but a virus...not an influenza virus, but a mystery virus.
I still have a fever today, and my cough got significantly worse again last night and this morning. I've also had complete nasal congestion, with no air going through my nostrils. Luckily, Afrin nasal spray helps clear that up and get rid of the sinus headache. But you can only use it for three days, so hopefully I'll only have one more day of sinus headaches.
My body just doesn't react well to being sick. But I feel like I am just slightly getting better, like I'm on the upswing. Hopefully, I'm right. I'm still stuck in bed today, but the body aches are much less. That's the best part. I've slept a little less today, but still needed rest. My cough is still horrible. It sounds like it's deeper now, but at least it's more productive. I've gone through so much water today, so my body must be trying to flush my system. It helps that my throat isn't so sore today.
Thanks for checking in. I hope to be ready to go back to work on Monday. So much for a week off.
Saturday, May 30, 2009
Friday, May 29, 2009
Getting worse, not better
The flu swab came back negative, but since I have been continuing to get worse, the doctor prescribed a 3-day course of Prednisone. I was hesitant to take it, so I didn't start it yesterday. But when I woke up with an even higher fever today, and every day getting worse, I decided to start the Prednisone. It's known to have bad side effects, particularly for me, but I'm desperate.
I slept almost all day today. I thought I was feeling a bit better after my last nap, but my fever is back along with most of my symptoms. The only thing that is a little better is the body aches, but the fever is worse than ever. Ugh. And it's Friday night, so I have to start feeling better. I won't be able to see a doctor all weekend. It's definitely time to start getting better.
I slept almost all day today. I thought I was feeling a bit better after my last nap, but my fever is back along with most of my symptoms. The only thing that is a little better is the body aches, but the fever is worse than ever. Ugh. And it's Friday night, so I have to start feeling better. I won't be able to see a doctor all weekend. It's definitely time to start getting better.
Thursday, May 28, 2009
FLU
I am very sick. It was just a cough until Monday afternoon, when the fever and all-over body aches came on. It became painful to move or be touched in any way. By Tuesday night, I could barely breathe, I was coughing so much. The cough is a very deep, "croupy" cough. Wednesday, I went to see my doctor. He agreed that I have the flu. He prescribed an antibiotic and Tessalon pearls for cough. He also did a nose swab to test for Influenza A. If it comes back positive, he will prescribe Relenza to treat the flu.
Dr. Shah said that he has seen a lot of swine (H1N1) flu cases recently, and that it seems likely that I have it. However, the only way to confirm H1N1 flu is to be hospitalized, and wait in isolation while the test is sent to the CDC. This option was not offered to me, as it is unnecessary. H1N1 is a strain of Influenza A, and it can be treated with Tamiflu or Relenza. However, Dr. Shah uses Relenza, because it also treats B strains of the virus.
So, for today, I am waiting for my flu test result, to find out if I need Relenza. Apparently, it is an inhaler, so it won't cause digestive distress (yay!). Many people will never know if they had the so-called swine flu, because it isn't tested for most of the time. It's also only treated if it is a severe case, or if the person is at-risk for any reason. That is why I would need treatment if I the test comes back positive. My system is weak and not good at fighting off viruses. I'm continuing to get worse at this point.
My worst symptoms today are fever, cough, fatigue, body aches, and weakness. The cough has caused deep chest pain and a very sore throat. Dr. Shah said that my throat is really irritated (and that was after only one day of coughing). I also have a few sores in my mouth and throat. I'm not sure if these are related or not. All of this coughing has made my headache a lot worse, too. The assault on my body is also making my autonomic system act up: tachycardia, loss of balance, and vertigo. I'm stuck in bed, and no one is allowed to touch me, as it hurts so much to move.
I'm pretty miserable, but I understand that this will pass soon enough.
Dr. Shah said that he has seen a lot of swine (H1N1) flu cases recently, and that it seems likely that I have it. However, the only way to confirm H1N1 flu is to be hospitalized, and wait in isolation while the test is sent to the CDC. This option was not offered to me, as it is unnecessary. H1N1 is a strain of Influenza A, and it can be treated with Tamiflu or Relenza. However, Dr. Shah uses Relenza, because it also treats B strains of the virus.
So, for today, I am waiting for my flu test result, to find out if I need Relenza. Apparently, it is an inhaler, so it won't cause digestive distress (yay!). Many people will never know if they had the so-called swine flu, because it isn't tested for most of the time. It's also only treated if it is a severe case, or if the person is at-risk for any reason. That is why I would need treatment if I the test comes back positive. My system is weak and not good at fighting off viruses. I'm continuing to get worse at this point.
My worst symptoms today are fever, cough, fatigue, body aches, and weakness. The cough has caused deep chest pain and a very sore throat. Dr. Shah said that my throat is really irritated (and that was after only one day of coughing). I also have a few sores in my mouth and throat. I'm not sure if these are related or not. All of this coughing has made my headache a lot worse, too. The assault on my body is also making my autonomic system act up: tachycardia, loss of balance, and vertigo. I'm stuck in bed, and no one is allowed to touch me, as it hurts so much to move.
I'm pretty miserable, but I understand that this will pass soon enough.
Tuesday, May 26, 2009
Support Group/Updates
There is a flu that has been going around my family. First my younger brother, then my boyfriend, now me. So, I've got a sore throat, annoying cough, and some extra body aches. The cough is the worst, because it increases my headache a lot.
Also, I've decided to have another support group meeting in June. The exciting news? I've found a few new forms of publicity for the group. One is a website called Meetup, which I paid to join for one month only, in order to contact the six people listed that are interested in Chiari Support. Next, I contacted Conquer Chiari so that our group can be added to their new Local Support Page. Last, I was contacted by the CEO of ASAP (American Syringomyelia and Chiari Alliance Project)! Really! He asked if he could list the group, and if there was anything he could do to help. He even said he would like to see me the next time he's in the Chicago area.
So, that's all good news. Hopefully, our little group will grow.
Next, I am planning on going to the American Syringomyelia and Chiari Alliance Project National Conference in July this year, which will be held in Madison, WI. I haven't bought tickets yet, but the plan is in the works.
Last, I finally ordered a walker. I ordered an Invacare Rollite Rolling Walker. It should be delivered sometime this week. I think that will help with my ability to move around, especially since it has a built-in seat to rest on. I think it should be really helpful. It will give me an alternative to my wheelchair.
Also, I've decided to have another support group meeting in June. The exciting news? I've found a few new forms of publicity for the group. One is a website called Meetup, which I paid to join for one month only, in order to contact the six people listed that are interested in Chiari Support. Next, I contacted Conquer Chiari so that our group can be added to their new Local Support Page. Last, I was contacted by the CEO of ASAP (American Syringomyelia and Chiari Alliance Project)! Really! He asked if he could list the group, and if there was anything he could do to help. He even said he would like to see me the next time he's in the Chicago area.
So, that's all good news. Hopefully, our little group will grow.
Next, I am planning on going to the American Syringomyelia and Chiari Alliance Project National Conference in July this year, which will be held in Madison, WI. I haven't bought tickets yet, but the plan is in the works.
Last, I finally ordered a walker. I ordered an Invacare Rollite Rolling Walker. It should be delivered sometime this week. I think that will help with my ability to move around, especially since it has a built-in seat to rest on. I think it should be really helpful. It will give me an alternative to my wheelchair.
Medications
The following are the medicines I take daily:
*Midodrine--this medicine is a vasocontrictor, it helps your veins to constrict, thus raising dangerously low blood pressure
*Seasonique--low dose birth control pill, 13 week cycle, reduces the frequency of migraines
*Nexium--to treat Gastric-Esophageal Reflux Disease
*Zyrtec--to help with severe allergies to everything
*Thermotabs--salt tablets that increase fluid absorption, raising blood pressure
*Provigil--to prevent daytime sleeping due to Narcolepsy. If I don't take this medicine, I am not allowed to drive.
*Lithium--a kind of salt. I was frequently suicidal for 10 years until I began this medicine. I haven't been suicidal since.
Supplements:
*Calcium
*Vitamin D
*Magnesium
*Vitamin C
Please notice that none of these daily medications treat pain.
I use the following methods to treat pain:
*Sleep at least 10 hours every night.
*Rest in bed 90% of the time.
*Ice packs for certain headaches.
*Heating pads for muscle relaxation or intestinal cramps.
*Peppermint oil capsules for intestinal cramps.
Notice that this involves dramatic lifestyle changes. I am unable to live a normal life. I work 2 hours a day, 4 days a week, when possible. I very rarely socialize.
If none of these work for my pain, I then resort to a medication.
*Advil
*Vicodin--I take half of the lowest adult dose.
*Darvocet--I take half of the lowest adult dose.
I used to take daily meds, but a doctor was concerned that I was having rebound headaches. So I discontinued my daily Advil and Tylenol. Nothing changed.
So, I know that it seems scary to take a lot of medication. But I am being closely monitored by my doctors and myself. It is the way that I cope with multiple chronic illnesses and endless pain. Please don't fault me for needing to resort to prescription pain medication at times. I am doing my best to survive. However, don't be concerned that I have any kind of addiction. I average taking one dose of a narcotic per week. I also have my liver enzymes checked by my primary care doctor, to be sure that I am not causing any damage.
*Midodrine--this medicine is a vasocontrictor, it helps your veins to constrict, thus raising dangerously low blood pressure
*Seasonique--low dose birth control pill, 13 week cycle, reduces the frequency of migraines
*Nexium--to treat Gastric-Esophageal Reflux Disease
*Zyrtec--to help with severe allergies to everything
*Thermotabs--salt tablets that increase fluid absorption, raising blood pressure
*Provigil--to prevent daytime sleeping due to Narcolepsy. If I don't take this medicine, I am not allowed to drive.
*Lithium--a kind of salt. I was frequently suicidal for 10 years until I began this medicine. I haven't been suicidal since.
Supplements:
*Calcium
*Vitamin D
*Magnesium
*Vitamin C
Please notice that none of these daily medications treat pain.
I use the following methods to treat pain:
*Sleep at least 10 hours every night.
*Rest in bed 90% of the time.
*Ice packs for certain headaches.
*Heating pads for muscle relaxation or intestinal cramps.
*Peppermint oil capsules for intestinal cramps.
Notice that this involves dramatic lifestyle changes. I am unable to live a normal life. I work 2 hours a day, 4 days a week, when possible. I very rarely socialize.
If none of these work for my pain, I then resort to a medication.
*Advil
*Vicodin--I take half of the lowest adult dose.
*Darvocet--I take half of the lowest adult dose.
I used to take daily meds, but a doctor was concerned that I was having rebound headaches. So I discontinued my daily Advil and Tylenol. Nothing changed.
So, I know that it seems scary to take a lot of medication. But I am being closely monitored by my doctors and myself. It is the way that I cope with multiple chronic illnesses and endless pain. Please don't fault me for needing to resort to prescription pain medication at times. I am doing my best to survive. However, don't be concerned that I have any kind of addiction. I average taking one dose of a narcotic per week. I also have my liver enzymes checked by my primary care doctor, to be sure that I am not causing any damage.
Monday, May 25, 2009
So sick today. Can't get off the couch. Need help just to get to the bathroom. But everyone's out and enjoying the day. I'm just stuck here. Yes, I'm sad and in pain and almost completely incapacitated. No, I don't need sympathy or pity. I'm having enough of a pity party on my own, for today. I need surgery so badly. My body is failing. I really need to be fixed. This is not fair.
And please don't tell me to cheer up. That doesn't actually help anything. Sometimes you can just let someone recognize the unfairness of their situation and feel justifiably sad and angry about it. Sometimes, that's the best thing a real friend can do.
And please don't tell me to cheer up. That doesn't actually help anything. Sometimes you can just let someone recognize the unfairness of their situation and feel justifiably sad and angry about it. Sometimes, that's the best thing a real friend can do.
Sunday, May 24, 2009
New/Worsening Symptoms
I'd like to apologize in advance. I am extraordinarily tired, but I will try my best to write coherently.
Yesterday, Gus and I went to his cousin's wedding, an hour and a half away. It was quite a challenging day for me, and really showed the new symptoms I'm developing. I used my wheelchair and my Aspen collar the whole day to try to help me last as long as possible.
First, I took my pills in the morning, as I always do. Unfortunately, as has been happening lately, I had a lot of trouble getting them down. Already, I have to arch my back, pull my head back, and lower my chin to my chest to get big pills down. (I don't take any huge horse pills.) Even while doing all of these things, I have been having trouble swallowing pills. Sometimes, they come back up, sometimes they kind of go back and forth, and now, sometimes I actually gag and vomit several pills back up. I drink copious amounts of water in between pills. It seems that now, I have to add a little bit of food in between to encourage the pills to go down, in addition to the large amounts of water I drink.
Next, at the wedding ceremony itself, I had one of my new "sleeping" spells. I became extraordinarily tired, and basically fell asleep. The only difference, I could still hear what people were saying. I just didn't have the ability to react. Gus discovered a neat little trick. He guessed that I could hear them talking about me, and asked me to move a finger if he was correct. I didn't know if I could, but he was right. I could move a finger! So, we've developed a new way of dealing with this, which is choosing one finger to mean yes and another to mean no. This way, I can still communicate a little while I'm "sleeping". The only question is, how to deal with these spells. Salt pills don't seem to be the answer anymore. Yesterday, I think the Provigil helped, followed by a lot of water to get the Provigil working sooner.
After the Provigil kicked in, I started trying to wake myself up by squeezing my hands and feet, trying to pump the blood back to my brain. The best thing was when Gus squeezed my legs, which were not circulating much blood, based on how cold they were. He just kept squeezing them, pretty forcefully. I had decreased sensation in my legs. He thought he was hurting me, but I could barely even feel it. After a couple minutes, this really seemed to help send the blood back to my brain. I know that there are support hose for this, but in the heat, I promise that overheating causes just as much stress.
After the ceremony, we were the last ones to leave. We made it out to the car, where I was able to rest in the back seat for a bit. Then, we went with Gus' sisters and nephew to Subway, where I was able to eat and take more meds. I was feeling pretty well at this point, compared to the rest of the day.
So we went to the reception, expecting to be able to stay an hour or two. Unfortunately, there was another problem. The band, which included multiple horns, were all using microphones, amplifying the sound to a completely intolerable level. Of course, I did my very best to be polite and ignore it. Unfortunately, my brain just couldn't take it. I started having a very interesting reaction. The upper half of my body starting convulsing. After I couldn't control it anymore, I begged Gus to get me out of there. We found a couch in the hall, where I let the convulsions go for a couple minutes, without trying to stop them. I've had this reaction a few times before, but never this severe. I certainly never deal well with too much noise or lights or activity. I have the same reaction to being startled, too. I'm not sure the name for it, but I know that it is an autonomic reaction to the brain being overwhelmed. It's not a real seizure, but similar. After I stopped convulsing, I was completed exhausted and hypersensitive. Even the flash of a camera felt like an attack. My whole body felt like it was being attacked. My nerves were on edge. At that point, we gave up on the rest of the night, because we knew the music would last throughout the evening.
We drove home, a little frustrated with my failing body. I was completely exhausted and zoned out for the rest of the night. I slept fine last night, but I'm still exhausted now.
I'm glad we were able to go to most of the day, but as always, I feel guilty for causing problems.
I find that these symptoms are really hard for people to understand. When the symptom is a headache or nausea, everyone can relate, because they've all experienced it at some point. When the symptom is falling partially asleep or going into convulsions, but not having a real seizure, it's a lot harder to explain. The easiest thing is to say that the "sleeping" spells are similar to narcolepsy, and the convulsions are similar to a seizure.
Today, I will be resting until it's time for the piano recital. I will have to find a way to be awake/alert for that time. Then, it's a week off!!! I'm so glad I gave myself this week off. My body is truly exhausted. The real problem is, after a week off, how will I ever convince myself to return to work?
I have gotten started on getting all of the necessary pieces together for Dr. Menezes. I'm still very torn about whether or not I could let another doctor operate on me. But, I'm at least going to get his opinion, if he's willing to see me.
Yesterday, Gus and I went to his cousin's wedding, an hour and a half away. It was quite a challenging day for me, and really showed the new symptoms I'm developing. I used my wheelchair and my Aspen collar the whole day to try to help me last as long as possible.
First, I took my pills in the morning, as I always do. Unfortunately, as has been happening lately, I had a lot of trouble getting them down. Already, I have to arch my back, pull my head back, and lower my chin to my chest to get big pills down. (I don't take any huge horse pills.) Even while doing all of these things, I have been having trouble swallowing pills. Sometimes, they come back up, sometimes they kind of go back and forth, and now, sometimes I actually gag and vomit several pills back up. I drink copious amounts of water in between pills. It seems that now, I have to add a little bit of food in between to encourage the pills to go down, in addition to the large amounts of water I drink.
Next, at the wedding ceremony itself, I had one of my new "sleeping" spells. I became extraordinarily tired, and basically fell asleep. The only difference, I could still hear what people were saying. I just didn't have the ability to react. Gus discovered a neat little trick. He guessed that I could hear them talking about me, and asked me to move a finger if he was correct. I didn't know if I could, but he was right. I could move a finger! So, we've developed a new way of dealing with this, which is choosing one finger to mean yes and another to mean no. This way, I can still communicate a little while I'm "sleeping". The only question is, how to deal with these spells. Salt pills don't seem to be the answer anymore. Yesterday, I think the Provigil helped, followed by a lot of water to get the Provigil working sooner.
After the Provigil kicked in, I started trying to wake myself up by squeezing my hands and feet, trying to pump the blood back to my brain. The best thing was when Gus squeezed my legs, which were not circulating much blood, based on how cold they were. He just kept squeezing them, pretty forcefully. I had decreased sensation in my legs. He thought he was hurting me, but I could barely even feel it. After a couple minutes, this really seemed to help send the blood back to my brain. I know that there are support hose for this, but in the heat, I promise that overheating causes just as much stress.
After the ceremony, we were the last ones to leave. We made it out to the car, where I was able to rest in the back seat for a bit. Then, we went with Gus' sisters and nephew to Subway, where I was able to eat and take more meds. I was feeling pretty well at this point, compared to the rest of the day.
So we went to the reception, expecting to be able to stay an hour or two. Unfortunately, there was another problem. The band, which included multiple horns, were all using microphones, amplifying the sound to a completely intolerable level. Of course, I did my very best to be polite and ignore it. Unfortunately, my brain just couldn't take it. I started having a very interesting reaction. The upper half of my body starting convulsing. After I couldn't control it anymore, I begged Gus to get me out of there. We found a couch in the hall, where I let the convulsions go for a couple minutes, without trying to stop them. I've had this reaction a few times before, but never this severe. I certainly never deal well with too much noise or lights or activity. I have the same reaction to being startled, too. I'm not sure the name for it, but I know that it is an autonomic reaction to the brain being overwhelmed. It's not a real seizure, but similar. After I stopped convulsing, I was completed exhausted and hypersensitive. Even the flash of a camera felt like an attack. My whole body felt like it was being attacked. My nerves were on edge. At that point, we gave up on the rest of the night, because we knew the music would last throughout the evening.
We drove home, a little frustrated with my failing body. I was completely exhausted and zoned out for the rest of the night. I slept fine last night, but I'm still exhausted now.
I'm glad we were able to go to most of the day, but as always, I feel guilty for causing problems.
I find that these symptoms are really hard for people to understand. When the symptom is a headache or nausea, everyone can relate, because they've all experienced it at some point. When the symptom is falling partially asleep or going into convulsions, but not having a real seizure, it's a lot harder to explain. The easiest thing is to say that the "sleeping" spells are similar to narcolepsy, and the convulsions are similar to a seizure.
Today, I will be resting until it's time for the piano recital. I will have to find a way to be awake/alert for that time. Then, it's a week off!!! I'm so glad I gave myself this week off. My body is truly exhausted. The real problem is, after a week off, how will I ever convince myself to return to work?
I have gotten started on getting all of the necessary pieces together for Dr. Menezes. I'm still very torn about whether or not I could let another doctor operate on me. But, I'm at least going to get his opinion, if he's willing to see me.
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