Posts

Posted on

A song is like a virus

Lord, the inside of my mouth was killing me when I woke up. My tongue hurt really bad, surpassing the annoying and uncomfortable feeling into complete pain. The inside of my cheeks felt like I had been biting and chewing them all night in my sleep. There were welts all over too, like from teeth marks. I also had some pain in my throat. Not like a sore throat but more like my glands in my neck were really swollen and tender. I took my temp as soon as I woke and it was at 100 degrees. However, it continued to get lower and lower throughout the day which is the exact opposite of when it has been doing. It is now 99.3 degrees. Maybe it was just a little virus and it’s on it’s way out now. That would be nice. I still have the rash on my upper back and a lot of nasal drainage going on. I have been taking Allegra and the steroid asthma inhaler for the last 2 days. The Allegra doesn’t appear to be doing anything. But the inhaler has been extremely helpful and I really really like it. It’s so nice to be able to draw in a deep breath without discomfort.  Unfortunately, I think I’m going to have to stop the inhaler. The last time I was on a steroid rescue inhaler like this was a few years ago and I was on Advair. It caused really bad thrush which is infection on your tongue. Dr. O told me that if I rinsed thoroughly after inhaling the steroid that it would not be a problem. Well, it has only been 2 days and I already have really bad thrush. Not sure if that is why my tongue is hurting  but it seems like a plausible theory. My tongue is also completely white on the top, which is another sign. I’m a little confused as to how this infection got out of hand so quickly considering that I am on a course of antibiotics. I have been on them for 8 days and have 2 more days left. Shouldn’t that prevent me from getting other infections? I asked Dr. C as much in a message I sent to him earlier.  We’ll see what he has to say.

Have had a pretty bad headache all day. It might be from smoking too much but I’m not sure because it is extremely consistent, instead of waxing and waning. I slept better last night, although I woke up like 10 times and wandered around a little. It has made me draggy all day and I have my fingers crossed that I’m tired enough to sleep through the night. My weight is holding steady though I want to get back into the rhythm of losing it. My nose is really itchy but I have not had any nosebleeds in like a week. I really don’t feel like eating dinner but I know I need to because I don’t like going to bed with nothing but Oxy in my stomach. The eye is continuing to get better, very small bump now and almost no pain. I have been very thirsty today and have drank a lot of Dr. Pepper and water. I know that’s not interesting but I figure the more stuff I throw out there then the more likely it is that some sort of pattern will emerge. I’m really glad that Dr. C and I didn’t lower my pain med dose. My whole body hurts.

Well, off to take my sleepy meds. It’s nighty night time for this girl.

Posted on

Hot blooded

Short update. Just trying to keep track of things and stuff going on.

My eye is continuing to improve! The little round bump under my lid is getting smaller and smaller. I still have like 3 days worth of antibiotics left, hopefully that takes care of it for good. After suddenly getting sick last night I decided to keep an eye on my temp today. Last night it seemed like the longer the night went on then the higher the fever got. Didn’t go above 100.6 degrees as far as I know. Same thing is happening today, my temp was 98.2 this morning when I woke up. It has been slowly climbing all day and is now at 99.7 degrees. I also have a medium bad headache and I threw up once around 3pm. I took a couple of anti nausea meds and that seemed to take care of it. I tried taking some tylenol/ aspirin for the fever but it is not having any kind of effect on it.  I wish I could take more pain medication because my whole body hurts again, especially my back but I’ve already had my maximum for the day. Plus it would leave me totally stoned off my ass, which I do not particularly enjoy. Looks like the only thing I can do is try to get some sleep. Oh! I forgot- I also have a rash that broke out all over my back. It’s irritated and itchy. Not sure what the deal is there.

One other thing that is going on is that my tongue is hurting again. Every few months or so, my tongue will turn bright red and becomes crazy painful. Like I stuck my tongue into a pot of boiling water and burned the shit out of it.  All the doc’s and me are curious as to what is causing that. That’s why I am mentioning it separately, to see if I can get any kind of pattern figured out. How often it happens, how long it lasts, ect. It sometimes happens when I am on a high dose of pain meds and this is my 2nd day of having them. It has been quite a while since the tongue thing has gotten really really bad…I remember around Christmas a year or 2 ago and my tongue hurt so bad that I couldn’t bear to eat, drink, or talk. Since then it goes through phases of hurting but it is more irritating and uncomfortable rather than straight up painful. I hope it stays that way.

Taking my temp one last time for today’s update. Yup, still at 99.7 degrees. Good deal, maybe it will stay there. Didn’t get a very good night’s sleep last night, I woke up like every hour and wandered around. Hoping that tonight is a little more peaceful.

Posted on

Happy happy joy joy

This is probably the best that I have felt in a LONG ass time. Physical symptoms are backing off, I feel more alive than dead, and I got some answers I was looking for!

Dr. O, the allergy specialist, got me in to see him right away. Apparently I’m allergic to like…everything in the world. He mentioned that someone should put me in a plastic bubble for the remainder of my life. That is something I hear often. First things first, I’m allergic to practically everything outside. Trees, pollen, mold, certain types of grass. I can’t remember all of it. Oak especially and elm (we have a giant oak tree in our front yard and the rest of the house is surrounded by elm trees. Go figure), all mold, dust, pollen, ragweed, ect. He said the allergies were severe enough that I am symptomatic, year round, at all times. Big fat bummer. So now I’m supposed to take all these crazy precautions. Like showering and washing my hair after being outdoors, changing clothes, trying not to touch anything out there, and so on. Sounds like a major pain in the ass…perhaps I should confine myself to my room for the rest of my life. In addition to the “avoidance therapy” I am now on 3 new medications. Allegra, Flonase, and a new steroid inhaler. Gee, I’m really glad… because I was beginning to feel like I wasn’t on enough medications. But whatever, we’ll see what changes happen! I am also allergic to cats and dog dander. I knew about the cats…that’s just too bad about the dogs. Addie and Annabel ain’t going anywhere. Perhaps if I bathe them every week then it would get better. Hmm, I tested positive for all the fruits and vegetables he tested for. Also have severe allergies to all tree nuts; pistachio, walnuts, hazelnuts, and others. And finally, I am also allergic to wheat and soy! I don’t even know how to begin phasing those out of my diet. I’ll just have to be very careful from now on. So that is what I’m allergic to. I don’t know if treating this is going to help my overall pain and inflammation but  it certainly can’t hurt. Dr. O and I talked about allergy shots but I’m not that into it. It is a really big commitment and can cause all sorts of side effects. So I’m just going to stick with the avoidance therapy and new medications and see how that works out. I had no idea I was allergic to so much stuff. Apparently it is an overreaction from my immune system. The body isn’t supposed to react to these things but MINE freaks out and tries to fight it all off. As far as I can understand. That is kind of weird…my immune system sucks and is a big giant failure. Now it is going into overdrive for no real reason? Ridiculous. Anyway, those are the answers! It will be a change. I will take the test results to Dr. S and see what he has to say about it. I don’t know if this is enough to explain my constant misery or not. Unfortunately Dr. S doesn’t have any appointments available until October 15th, so I am going  to have to wait for my answers.

Saw Dr. C on Friday. It probably wasn’t all that necessary but I wanted to check in and the appointment was already scheduled. Why was it not totally necessary to see Dr. C? Because everything appears to be backing off and going back to normal. I think anyway…I suppose it is possible that I was feeling SO unbelievably bad for those 2 or 3 days that when there was an improvement, it felt huge to me. But I think that I feel better than I have in like the last month! My skin and body aches have been reduced by a good amount. I haven’t thrown up in almost 2 days and I haven’t really felt nauseous either. The headaches are manageable for now and my blood pressure is where it is supposed  to be. The dark purple bruises that were on my hands and feet have faded almost completely away. I’m sleeping and eating a lot more than I have been as of late and finally gained a few pounds. That is good…I don’t want to keep putting weight on but I was really creeped out that I was losing so much weight no matter how much I ate. My hair is still falling out a lot but I hope that the relief of so much pain will lower my anxiety and it will stop eventually. I still have some cuts on my scalp but they are healing and gone all together in some places. Been having random brain zaps and electric shocks for the past few weeks but they are not consistent enough to really bother me. Fever is down. And my eye is healing up! The little bump looks kind of like a little BB or something but nothing like the giant marble that it had been.  It also doesn’t hurt nearly as much. I guess the antibiotics finally started kicking in! About time, I’ve been on them for 6 days. Stupid immune system. Dr. C gave me some antibiotic ointment to put on it IF things stop moving along.  So all in all….very good! Things are not gone completely but they have dramatically improved in the last 4 or 5 days, which is all that I hoped for. I’m feeling so much better that I even thought about stepping down (in dosage strength) on my Oxy. But when I mentioned it to Dr. C I realized that I might be being a little hasty. I don’t know how long this relief will last and I don’t want to step down to 15mg, only to have everything go insane again. It doesn’t look good when the dosage of such a strong medication is changed too frequently and if all the pain came back, I don’t know that I could just go back up to 20mg again. So we kept it where it is and will see how it goes.

Dr. C sent in for my pain meds yesterday and I was able to pick them up this morning! So now I’m lounging around, watching Back to the Future and enjoying the feeling of comfort. It had been quite a while since I was privy to that. There is only one new thing going on and it’s, hopefully, very temporary.  My heart and chest hurts. There is this sharp, cramping, shooting pain towards the left of my heart. I am thinking that it is something like a small stitch…I’ve had things like that before. It used to scare the crap out of me and send me flying to the ER but I’m much more relaxed about it now. BUT If I’m being totally honest, that scares me as well. That I’m taking it in stride and neglecting to get it checked out. One of my biggest fears is that I’m going to blow something off that turns out to be a very big deal. God knows that it has happened before. Like the kidney thing…my back ached for days and after I finally decided to get it checked out, it turned out that I had a kidney stone blocking my ureter, a wicked kidney infection, and my kidney was failing. Surgery and 4 days in the hospital over that one.  Things like that are where the fear comes from. That somebody is missing something. And it will just keep going and going until it’s too late. Bleh, I don’t know. Living this constant Dr. House episode has screwed me up a bit and I can never tell the right way to respond. Guess it’s just something that I’ll have to keep working on.

My dream is to have some health problems figured out, get some physical and emotional relief (that lasts longer than a week), and get a job. And it looks like I might be on my way!

 

Update: *sigh* I guess I spoke too soon. About an hour ago my head started hurting, I got nauseous, and my fever came back. Not too terribly high, just 100.6 degrees. Still…I wish I could catch a break.  Maybe a good nights sleep will help me fight this stuff off.

Posted on

Hallelujah

Though I’m loathe to put these feelings out there, I suppose now is the time that it would really help to write.  We’ll see if it can stop the obnoxious crying, anyway.

You know times are hard when you envy those who are selfish enough to commit suicide.  You know times are harder when you find yourself not caring if you are as selfish as them. Of all the people it would hurt, possibly destroy for a while, considering the blow back on people who have done nothing but help you… it takes a great amount of pain to find yourself not caring. Well not, not caring but losing it in your desperation to make things just a little bit easier on yourself. Compounded by the fact that your body is trying to convey that you are dying already, even while your rational mind is trying to remind you that you are probably not. Who cares when it hurts so bad? How much can one person be expected to take in a single life time? Let alone the last decade.  It’s like dying of cancer, without the benefits. The benefit of people believing you..the benefit of having an answer…the benefit of knowing that your pain will either improve or you will escape it when you die. The emotional toll of “enjoy, let’s see how long you last” is insurmountable.  Forget about everything else falling down all around you. Forget that you are dragging people you love down with your constant problems. Forget the constant worry. Forget that people with their own difficult problems are working their asses off to try to keep you afloat. Keep you in doctors and in medicine.  Forget that your existence is pretty much meaningless- you contribute nothing to this life. You only take away.  Even if you can wrap your mind around all that, it doesn’t lessen the goddamn pain. The pain that robs you of everything and crushes you. The pain that might never go away. The pain no one seems to have a satisfactory answer for.  With things like that filling your mind, it makes it an attractive option to just take all the pain meds you have in your possession. One last dose of those meds that you are a prisoner to, and that is all you need to fix everything. Forever. *sigh* Yeah, I guess romanticizing it makes everything look nice, doesn’t it? Like I said, there is everyone else to consider. And that takes away your choices.  It shouldn’t make that much of a difference…just one more choice taken away. Most everything has been taken away already. What’s one more thing? Seems kind of stupid to be sitting around crying about it.  And repeatedly listening to Jeff Buckley is probably NOT the ideal thing to be doing right now but hey, it’s my depression.  As long as I’m not checking out, I figure I can do what I want to pass the time… even if it is counterproductive.  To everyone or no one who is reading this, I’m okay. While it may not be the most cheery subject, this is something that I think about a lot. If there was a way out, wouldn’t it tug at your mind? It’s not like you can just tap someone and spill all this out to them, either. Not without freaking them out and making them feel bad. When you already do enough damage. But I’m experimenting with the thought that if I can express the craziness, maybe it will slack off a little bit.  Anyway, moving on to updates….

From the tone of the above madness, it probably sounds like things are worse than ever. Not true. A few days ago, things were worse than ever. That’s where all the thoughts started. Things actually might be trending up a little bit. I don’t feel quite as much like I’m going to just die, which has brought a little of my fight back. The body pain has slacked a bit, I only really start puking my guts out at the end of the day, and the stupid infection in my eye seems to be backing off a little finally. Which is especially good considering I got kicked out of the special eye doctor’s office for having the wrong insurance and now there is nobody to help me with it. If it’ll start healing on it’s own, good. I see Dr. C on Friday just to kind of check in with everything. He’s really good at convincing me not to freak out so that will probably be beneficial. Maybe we’ll even do a little blood work to ease my mind or something. Like I mentioned before, when your very body is trying to convince you that you are dying, it is hard to hold on to your rational thought. He said he can’t do anything about increasing pain meds, but that is totally understandable. Now that I don’t feel half deranged with physical pain, my interest in the meds has relented. That’s one thing most the doctor’s don’t seem to get. My obsession with pain meds is directly related to how much pain I am actually in. When the pain lessens, so does the interest in pain meds. Conversely,  when I am in overwhelming amounts of pain, the pain meds are nearly life and death. Silly doctors…fix the pain and you’ll fix the pill problem. Anway, I’m glad that I’m seeing Dr. C soon. Glad he is back in town though I am sad his vacation is over. Also, there is a small possible ray of hope- I got a message from the allergy specialist. Apparently quite a number of things came back positive for allergic reactions. Could the pain doctor be right? It couldn’t be that simple, could it? I have to make an appointment to go see the allergy guy before I will know for sure, which is hugely irritating. He wants to create a “treatment plan”. Can’t you just tell me what I’m allergic to and I’ll stay away from it? Seems like the easiest way to work this. But , whatever!! Any answer is a good answer. Then I can go to Dr. S with the results, and he and I can make a plan and a prescription plan! Then I can leave Dr. C alone and things might actually improve! But that is getting a little ahead of myself. Hope is the deadliest thing of all. Hardest to shake, too.  Yet so necessary. Bah.

Fingers are crossed so hard.

Posted on

Polly Pukesalot

Nausea is the absolute worst. It hit a few hours ago despite the fact that I don’t have much of a headache right now. Might be some kind of stress reaction. I took an anti nausea medicine that is placed under the tongue. The taste alone was almost enough to make me throw up. Seems kind of counterproductive.  But it kicked in and I have felt a lot better since. Thank God.  I kept getting drenched in sweat and was freezing. My face was ice cold. I guess it was kind of like the dentist office.  However, that went away after taking the anti nausea meds so maybe my body was just stressed about feeling so sick.

I tried Aloe and ice on the itching hurting places on my palms. Today it looks like a really big dark purple bruise. I’m developing the spots on the soles of my feet as well. A deep itching that is so intense that it is almost painful, red, hot to the touch, bruised. I vaguely remember bruising on places like your palms and the bottom of your feet to be indicative of something really bad. I hope it is just some kind of stress induced allergy. I can’t decide if it is more painful or annoying.

My eye doesn’t seem to be getting any better despite the fact that I have been on the  antibiotics for 2 days. But it also doesn’t appear to be getting any worse, which is a huge huge relief. I have this thing with my eyes. They are, hands down, my best feature and I would be devastated if something happened to them.  Almost faced that once, when I was in the car wreck and they wouldn’t let me drink for hours while they tried to figure out if they would have to remove my eye.  I was so scared that this infection was going to cause some kind of permanent damage. I guess it is still possible but as long as it is not getting worse, I can deal.  Still painful and ugly but I’m hoping to see some improvement soon.

Still dealing with the widespread pain, constant headaches, skin hurting, exhaustion, hair falling out, and cuts on my scalp. At this point all of this is like background noise. I would really like to take more pain medication but I have already had enough for the day. I am not exactly sure when Dr. C is coming back but I want to see him as soon as he does. I want reassurances on this eye thing and the bruising.  I also want to talk to him about possibly upping my pain meds. He’s not going to like that and neither do I. Everything just hurts so damn much. The last time I went to him, I couldn’t stop crying and he doubled my pain meds, taking me up to 20mg Oxy, four times a day. I don’t know if I want to try and increase that or just add one more pill a day. It’s possible that he will refuse and just tell me to suck it up. That would be totally understandable and I would deal. But Dr. C is also extremely compassionate and understanding. I can’t imagine him just saying “too bad” and leaving me in pain.  So I guess we will see. I have finally gotten my blood pressure under control, it seems. By tripling my BP meds. That is good, my heart was working way too hard. Increasing to 2 Spironolactone a day seems to be having a good effect, I’m happy to keep it there. I am continuing to lose weight despite not exercising or having the best diet.  I’m actually looking pretty good…assuming that I don’t go bald from all the hair loss and my eye doesn’t fall out.

Posted on

Breaking Dawn

“Childhood is not from birth to a certain age and at a certain age the child is grown, and puts away childish things. Childhood is the kingdom where nobody dies.”

-Edna St. Vincent Millay

Posted on

“No big deal”

It always shocks me how quickly things can get out of hand in such a short amount of time. I don’t know why, I really should be used to it by now.  I have too little patience to put a lot of effort into this post. Just gonna try and recap what is going on.  I’m feeling very frustrated and don’t need to write a novel about how sorry I feel for myself. Though I have a feeling this is going to be a long one.

The biggest problem is this stupid eye thing. I knew this was gonna come around and bite me in the ass.  It started, technically, four days ago. I mentioned it in my last post. It started out feeling like I had a cut underneath my top lid. I didn’t see anything when I finally got around to looking at it so I hoped it was just an allergy or something. I don’t know how I knew it  was going to get out of hand. The next day, it looked like I had a tiny round bump underneath my LOWER eyelid. Kind of odd that the pain switched locations but hey, whatever. Right away I figured it was a stye despite the fact that I’ve never had one before. My Mom agreed with me and told me to put a warm compress on it several times throughout the day. I also happened to see the Allergy Specialist and mentioned it to him. He agreed that it was a stye and said not to worry. “No big deal”. He did mention that if it got any bigger, I might want to see a doctor about getting some antibiotics. Also recommending the warm compress, I took their advice and started putting a warm/hot compress on my eye every few hours. I wasn’t sure but it seemed like that was only making it irritated. Yesterday the stye was bigger but I continued with the compress. However, by the end of the day I couldn’t deny that it was looking worse.  So I made an appointment with some random doctor at ARC for 10am. Good thing I did, too. When I woke up this morning the “stye” was freaking huge and the entire lower slid was swollen all underneath. The doctor, Dr. L, said that it either started out as a stye or a blocked tear duct. Somehow over the span of 2 days it became viscously infected. She said that it was possible that it was even a staph infection and that I had an abscess underneath my bottom lid.  Dr. L prescribed Doxycycline, which is a really strong antibiotic. I’m also to continue with the annoying compresses in an attempt to get the thing to drain. Ugh, SO freaking gross.  I asked her if there was anything that I should look out for. She told me that if it got any more swollen then I needed to go to the emergency room. Yup, no big deal indeed.  I really hope that this gets resolved soon and that the antibiotics start to work quickly. This is painful and I am really really scared that it is going to get even more out of hand. I really don’t want needles to drain it or surgery to take it off. Not to mention that this infection seems to be more out of control than most of the shenanigans my body goes through when something gets infected. I have never had a staph infection before but I have always been scared of the idea. Combine that with the fact that it is in/near my eye and I’m totally freaked. C’mon, please give me a break this time.

Something weird happened at the dentist’s office that I don’t know quite what to make of.  The last few times I had gone to the dentist, I was kicked out because my blood pressure was too high. I don’t know why you need low BP to get your teeth cleaned but hey, I’m not a doctor. Finally got that cleaning done and was gonna have some more extensive work done today. I think I need like 7 fillings all over my bottom teeth. Like always, we got me started on the nitrous oxide, blasting it. This is how we roll everytime I go to the dentist. Ever since the car wreck, where 5 of my teeth were broken and 2 were completely removed,  I have this thing about my teeth and the dentist.  Not my favorite place. BUT with the laughing gas, I don’t mind it as much now.  Anyway, I was pretty high on the nitrous and drifting in and out. But all of the sudden, though I wasn’t really that awake, I went pale a sheet and sweat started streaming off of my face and neck. Like, running off of me. Dr. W totally freaked out and cut the gas. She got a big towel and used to to wipe the sweat from my face. Then she used her little air puffer to cool my skin until I came around. I had been feeling vaguely nauseous but after the nitrous was turned off, I went back to feeling normal pretty quick. My body was covered in sweat though. I could feel it sticking my shirt to me and my legs left sweat all over the chair. Dr. W tried to insist that I call Dr. C right then but I had to explain to her that he was out of town. I promised to write him though and tell him what had happened. And I did when I got home. We’ll see what he says. We are thinking it may have been some sort of acute stress reaction, that was Micah’s idea too, but it has never happened before. Even during root canals. And I was relaxed and mostly asleep. So who knows. Maybe Dr. C will have a different idea.

The littler things and things of note…. I had a beyond severe headache/migraine on Tuesday September 11th, the day I got my pain meds refilled.  I was on a fairly high dose when it happened. It was the worst that it had been in a very long time. It made me sick and I threw up 7 times.  No nosebleeds though. It hurt a little off and on yesterday and today I was fine. From the headache, anyway. There is something going on with my hands. I have the bruised, bright red, hot spots on my palms and in between a couple of my fingers. They hurt to the touch and itch horribly. Like I’m having an allergic reaction to something.  Dr. L, the random doctor from today, said they look almost like burns. She recommended Aloe and ice. I don’t think I have any Aloe and I can’t bring myself to ask Mom for the money to buy some. I already have to tell her that I need to buy more Nexium. And she paid $1,700 for the dentist today. And I need to buy the Doxycycline which is $10. And the insurance company is refusing to get their act together and are still charging me for medication and co-pays despite the fact that I reached, and passed, my out of pocket maximum a month ago. I need Latuda, my mood stabilizer, and have been out of it for 2 days. The pharmacist told me that it would be $182 for 4 of them.  She then called back and told me she found a coupon and would be able to fill the whole bottle for $290. So I am costing my Mom…what. $1,900- $2,100 today depending on how much Latuda I get. There is a pit deep in my stomach knowing that I have to talk to her about it when she gets home.  There are no words to describe how it feels to take her hard earned money from her.  Most of the time I really hate myself. And my stupid body.

Last thing, I saw the Allergy Specialist, Dr. O, on Monday September 10th. He was very kind and thorough. He was even able to explain to me why I was allergic to fruit! And only RAW fruit at that. It’s because of the freaking pollen! From when the fruit germinates and forms, there is pollen in it’s fruity guts! THAT is what I am allergic to and why my throat swells shut when I eat it! When fruit is cooked, the pollen is burned off. I was inexplicably delighted with the news. That is one old mystery that has caused a lot of disbelief and odd looks over the years.  I can’t help but be ecstatic when a mystery is solved, no matter how small.  He said it’s not even that uncommon. It has a name, which I promptly forgot, and everything.  Anway, Dr. O is intrigued with the idea that I am allergic to something that I keep exposing myself to over and over again, and that it might be causing some of my other pain symptoms and problems. He decided to forgo the usual pin prick test in favor of a blood test. I’m on too many meds that could alter the results of the skin test AND he is testing for a ridiculous number of allergies. Including everyday things like egg whites and milk and stuff. Should get the results sometime next week. I’m very much anticipating this. Even a small answer does a world of good sometimes.  And I need some good right about now.

Posted on

Small changes

Not quite sure what to call this post. Hardly anything different, but I promised myself- and my mom, that I would try to keep up with it daily. The shocks are gone today! Yes! No electric feeling of any kind. Don’t know why it was there and don’t know where it went. Don’t care much either. When your life is one long Dr. House episode, you have to pick your battles. Something has to persist for days before I even bother to tell Dr. C about it. Poor Dr. C….messages from me every other day, throwing new symptoms at him.  I have long since stopped wondering exactly why all this stuff is happening. But he’s always nice enough to provide me with at least a theory. That makes it a little easier. He is on a 2 week vacation now and, except for my pain med refill, I’m am honestly trying not to bug the hell out of him.

Anway, no shocks. There is something wrong with my left eye. Or eyelid….it feels like I have a cut on the inside of my left eyelid. I haven’t looked at it yet. That’s the first thing most people would do but to be honest, I’m not entirely sure I want to know. The cuts on my head were mostly on the left side but now I am slowly developing one’s on the right side as well. Not sure why but this is a symptom that unsettles me the most. Or maybe it’s not a symptom of anything. Probably isn’t, actually. Just some other weird problem.  The theory is that the stress is causing irritation and I’m scratching in my sleep. Entirely possible. Hope it’s something simple like that. One other change today, I upped my Spironolactone up to two pills a day. I noticed on the bottle that I was supposed to be taking it twice a day. I either heard wrong initially or forgot the correct dosage a long time ago. Anyway, might be worth mentioning if anything new comes up.

Was able to drag myself out into the real world a little today! Went to Sonic to get a drink and dinner for me and Mom. It was nice to be out. Ugh, I really really hope that Dr. C gets the message about refilling my pain meds on Tuesday. Blood pressure, pulse, and anxiety are a bit higher without this guarantee.  If I don’t get a message by late afternoon saying he will…then I have to call the office…where they will probably try to have another doctor fill it for me. Considering the extreme high dose (what I’m at currently) of such a strong medication, I’m pretty sure I don’t want any other doctor involved with it. None of their business anyway. Stupid pills, running my life again. But that is a post for another time. Yes, I have plenty to say about that.

Posted on

Shock treatment

Today’s newest problem? Electric shocks. That all I can think of to describe them. Maybe brain zaps. Everytime I move my head, look at something else, it’s like sticking my finger in an electrical outlet. Shock shock shock. Starting in my brain…and then traveling all through my body, straight out of my toes, in a split second. It’s over before I barely register that it’s going on. But I can feel it start in my brain. Then it travels down, so fast. Zap. Everytime I move…I’ve tried to be still today. But there is only so much still I can take before my body starts aching.  I’ve this feeling before…of being electrocuted. But only when I have run out of Cymbalta. I’ve heard that brain zaps are a frequent side effect of Cymbalta withdrawal, so I would just bear down and wait for it to be over. But I’m not missing anything now! I have ALL my medications! So why the shocks? Well…it’s better than the scary loud shocks that start in my ears and head. That feels like someone just walked up to me and smacked my ears with their hands. WHOOMP!! Change in pressure, sounds…a screaming hollow thud and then a ringing. Electric jolt through my brain. Those actually frighten me. They are so loud and so sudden that I gasp and flinch, caught off guard. That was happening constantly a few weeks ago. Glad that, for whatever reason, it is mostly gone. Now, if I can just go to sleep and have these brain/body shocks piss off. THAT would be great. Taking my sleepy meds now. I’ve had more than enough of this today.

Still a multitude of problems. Headaches. My body aches in a delicate way- my very skin hurts. My eyes. Ultra sensitive. But the small clear blisters that were all over my hands are gone! Finally. Except the one I scratched. The one that broke open and got pus everywhere. Disgusting. It has left a hideous deep scab that will scar. Happy that I didn’t scratch anymore of them.  Still have cuts- scabs and raw wounds all over my scalp. Well…probably only 4 or 5 different cuts, but it FEELS like it’s all over. I can barely touch my head. Hair is still falling out at an alarming pace. I don’t play with my hair or run my fingers through it anymore. I just wind up with a handful of hair and scabs. So very gross. Maybe I have leprosy and nobody has told my yet? Mmmm, maybe.  Get exhausted going to the kitchen and back. Forget the outside world. It’s out of my reach. I stay safely in my rooms, moving as little as possible, waiting for something to happen. Something has to happen. This has been going on a disturbingly long time. Dr. C and Dr. S will help me. The primary care and the pain doctor who make up my special team. The team that gets me through this life of mine. Thank God there are people in my corner.

Posted on

All consuming

People with chronic pain are twice as likely to commit suicide. If they are anything like me, it’s not just the pain you feel day in and day out. It’s how it seeps into everything. Adding things to your life that you desperately don’t want. Taking things away from you that you don’t want to lose. Hope. Pain. Fear. Addiction.  Stability. Functionality. Ambition.  Desperation.

I could write everyday for years and still probably never be able to sort it all out.  But if I try…maybe things will get just a little bit clearer.