The Stand

Ah, God. It’s like a whole new life! I have not felt this alive and happy in a very very long time. I am doing anything and everything. Some things I haven’t done in over a year. Some in over a few years. Some never. And I am loving every minute of it. It would take a lot to take the smile off of my face!

I feel like the whole entire world is open to me, all of the sudden. I have been trapped in my house. Tethered to the pain, tethered to the pills. And now, everything is available. I can go to shows and not be in pain simply by standing around. And I don’t have to take a million pills there to maintain comfort and keep the pain at bay. I also don’t have to spend tons of money on alcohol so that I can numb the pain and discomfort (and generally act like an ass once I’m drunk). So I have gone to 2 of Jon’s shows so far. I can run any errands I want or need to. I go to the bookstore, I go to the corner store, I got the car inspected, I go to the bank, the pharmacy… and I don’t even need to rest at the times in between. I am able to exercise! I walk on the treadmill and I walk my dog. Annabel is so happy! I haven’t been able to walk her in over a year. She has been good and patient. Now I walk her about 35 minutes an evening. I am thinking about taking up yoga again. On Sunday night, I was able to hop up and play video games with my little brother when he asked me to. And I had fun and enjoyed it! The game system said that we had not played since December 2017. That was really fun.  Yesterday I did something that I have never done before- I voted. Micah asked me to and I cannot resist my brothers anything. Before, it would have been out of the question- getting dressed, getting out, and standing in line for any length of time. But this time I got ready, drove to Micah’s house, and we went to two different voting stations. The first had like a 90 minute wait. Even though I could, I did not feel like standing in that line. So we went over to Randalls and wound up standing in line for about half and hour. Not so bad at all. Micah told me about politics and I figured out who to vote for. And I made a tiny difference.  I have been able to help out with housework, to the great relief of my mom and Jon. I have cleaned the kitchen, done the dishes, emptied the trash, changed the light bulbs, worked on our room. I’ve done more housework in the last week than I have in the last 2 years combined. And that’s not all. I’m ready for a job. A full time job. Oh lordy, the jobs!

I have applied for roughly 10 so far. There is so much to choose from because there is so much that I can do now! Obviously, I can’t go crazy and be a construction worker or anything like that. But I’m also not forced to limit myself to a call center ONLY. So I have applied for lots of stuff. Most of them customer service jobs. Receptionist, personal assistant, sales. I have done 2 phone interviews, both going very well and in the direction of a hire. The first was a customer service rep with Google Fiber. I’m not sure about that one. Their new training class does not start until December 1st and it only pays $12/hr.  Also, they are schedule nazi’s. If you miss a day of training or are late, you get fired. Training is 4 weeks long. And in San Marcos. i don’t know about that. I passed the phone interview with flying colors and am supposed to do a video interview on Monday at 2pm. But I wrote them and told them I couldn’t really wait a whole month to start work but that I would still be very interested if nothing else came up. Then I asked their advice on how to proceed. We’ll see what they say. The second phone interview happened last night around 9:45pm for a business to business customer service rep. They are in a big rush. The lady I talked to, Krista, was really enthusiastic about interviewing me and said that I had a great phone voice and wonderful personality. But she wanted to interview me in person today and have me start on Monday. I was tempted, $14-15/ hour plus benefits, but there are a couple of jobs I applied to after that I am really really hoping to hear back on.  I didn’t want to waste their time interviewing and starting training, just to get another offer and take off. Krista was disappointed but very grateful for my honesty. She asked if she could keep my resume on file and keep me in mind. I told her that I would write her in one week and let her know if another job was in the picture. If not, she might call if any of the people they hire on Monday don’t work out or if they are looking for anyone else. There are 2 jobs that I am especially hoping to hear back from, one of which I am really excited about. One of them is something that I have never considered before- repairing windshields. Apparently I would go to wherever the car is and repair the windshield there. No experience necessary, they train you 100%. And they claim that it is not labor intensive and that it pays $700-1200 a week. I spent 6 years building computers for Discount Electronics and am really good with my hands. I am also really good with customers. So that could be cool. We’ll see if they get in touch. But the job that I really really want to hear about is the Traffic Management Center Operator.  They work with Txdot and basically, I would monitor the roads for any obstruction. Car wrecks, things in the road, weather, and all sorts of stuff. Then I would have to inform all sorts of people. 911, 311, hardware trucks, towing trucks, news stations, and stuff like that. So I pretty much see the obstruction and handle the shit out of it. It sounds like it would be a great job to maintain while I wait to reapply with APD for the 911 call taker job. I will be working to see unexpected things and report them quickly and efficiently. The pay is $14-17/hour, with benefits, and all sorts of PTO and sick leave and stuff. Lots of hours  they said, 8-12 hour shifts, weekends, and holidays. The center needs to be worked 24/7 all year. So great pay, tons of hours, and great preparation. I am hoping to hear from them so hard. Fingers crossed!

In case it is not obvious, the new medication regimen is working phenomenally. My pain is usually at a 2 or a 3. The exhaustion is gone. I am comfortable and functioning at a very high level. This is more than I ever could have hoped for. I felt like a normal, real live human girl. Not a drug freak or a chronic pain patient. Anything is possible. I am supposed to just take 2 short acting Oxycodone a day and I am still struggling with that. But I am doing my best and am improving steadily. I want to take these exactly as prescribed. So I’m working on it. Everything else is pretty stable. I still have a cough but Dr. C gave me some cough medicine and it helps. I saw the endocrinologist and she took like 7 vials of blood and urine so that she can do a million tests. I have to stop drinking at 10pm tomorrow night and then pee in a cup when I wake up Monday morning. Then my appointment is at 7:30am. After that, I drive out to get my mother-in-law and take her to her appointment with Dr. C. I think she will really like him and I am so grateful to him for seeing her. She really needs some help. I saw the Psychiatrist a few days ago and it was a really short visit. Everything is fine and don’t change anything. I still haven’t been having any headaches since starting the allergy regimen.

I feel like things can’t possible get any better. This is amazing.

 

Bite the bullet

Yesterday was pretty rough. I woke up to my back absolutely screaming. It was the anniversary of my car wreck, the bad one, the one that changed most everything. It was like my body was physically remembering. But when I went out to smoke, I saw that it was pouring rain outside and that explained it. My back always gets so much worse when it’s storming. It’s really a shame because I love when it rains. I just wish that it didn’t hurt so much. My back woke me up at 10am but I just couldn’t bear to get the day started with that kind of pain. So I took 4 more muscle relaxers and was able to sleep until noon, which made things a little bit more bearable. I’m trying to take it easy on the pain meds to keep my tolerance in check but it’s difficult on days like yesterday. My back has been pretty bad today as well but nothing like yesterday morning. I can’t wait until the 15th so I can talk to Dr. S about getting some back injections. I hope he doesn’t mind and will work with me to get it taken care of soon. Aside from the rain, I think maybe things got bad because I spent most of the day before in bed. For some reason that really pissed my back off. I know I sit horrible, and some doctors have told me that I really should work on my posture and that it will help my back in the long run. But sitting with my legs crossed and my arms resting on my knees with my shoulders hunched over makes my back feel so much better. I don’t know if it is because it takes the pressure off of that disc…or maybe it just stretches my back out in a certain way. But I haven’t noticed it hurting anything and when I don’t spend a portion of the day sitting like that, it seems to make my back throw a fit. So I keep doing it.

Things are about to get much more difficult. My mother-in-law, Sharyn, fell last night and broke her hip. So Jon and I are going to have to give her as much help as we absolutely can. Help her get around, keep the house clean, work on the yard, take care of the dogs. It helps that Jon’s cousins live across the street from her. Sharyn just finished having surgery.  God, that poor woman can’t catch a break. My father-in-law, Bob, died a few months ago in July. He was Sharyn’s partner for 16 years. It has been hard on everyone but especially on Sharyn, of course. Physically, Sharyn is even worse off than me. And Bob used to take care of things around the house for her. Jon and I were there visiting her just a few days ago. I wish she had told us what she needed done so that we could have taken care of it for her. But she didn’t say anything about it. She has been having lots of trouble sleeping lately. I shared my muscle relaxers with her and my Clonidine but even those stopped having an effect. We gave her some Amitriptyline to try but I don’t know how it was working for her. I wonder if that contributed to her fall. She was way too drugged up to really give us the story about what happened when Jon talked to her last night. I suppose we will find out soon enough. God, she is already struggling with money. I don’t know how she is going to be able to pay for the ambulance ride, the surgery, and the hospital stay. I feel so terrible for her. I just hope she will let us help her as much as we are wanting to. Maybe it would be best if we lived out there with her for a time. If Jon could borrow her car then he would be able to drive to work. And I’m not working at the present time….I wonder if Jon would prefer me putting off looking for a job so that I can help his mom. Something to talk about. Dr. C was kind enough to fill my pain meds early so that I could take them out with me instead of making the drive back to Austin to pick them up on Sunday. We had to pay for them out of pocket but we just used the money that we were going to use to buy Kratom. It worked out. He also sent in some Promethazine for me because I am still throwing up off and on. And I got a refill of my birth control. Luckily those did not cost anything.

I’ve lost another couple of pounds. That makes 44lbs since May. Ideally I would like to lose 20lbs more. It still concerns me that I am losing weight despite not trying and even eating a lot. And eating junk food to boot. Chocolate eclairs, candy, chips, and stuff like that. And I’m not eating particularly healthy. Pizza and sandwiches and beefaroni. Drinking quite a bit of Dr. Pepper. Yet I continue to lose weight. Well, whatever, I will take it. If there is no real problem behind this then it is definitely a good “problem” to have! My hair is still falling out, of course. That is the thing I think I most wish would resolve itself. I don’t really notice my hair being to thin or having bald spots or anything, it is just SO inconvenient! Having to pull so much hair out every hour or so and having hair just about everywhere. Trying to round it all up to put into the garbage can so that the dogs don’t accidentally eat it. Jeez. Still trying to work with the allergy medicine. My drainage has been someone better the last few days which is odd because I lapsed and didn’t take the allergy meds for a day or two. But maybe the storm has cleared something out of the air or something like that. My breathing has been pretty good. I went through a phase where I was just sleeping a ton. One day I woke up at 2:00pm and the next day I woke up at 3:45pm. After going to bed at my usual time, midnight.  But that ended when my back started hurting so bad….even then I sleep until 11am or 12pm. So I’m sleeping at least 12 hours a night which is quite a lot of sleep. I’ll have to keep an eye on that.

I starting taking a Cymbalta at 3pm yesterday. So now I am up to 2 a day. I am hoping that improves my mood and doesn’t screw with my sleep too much or give me brain zaps or anything. If it does then I guess I will need to talk to the Psychiatrist. I also need to talk to her about changing my mood stabilizer soon. Because I have met my out of pocket maximum, I am good to stay on the Latuda until January when my insurance changes. But after that…well, it’s $1,000 a bottle for a month’s supply. I am just so tired of dealing with it and finding ways around it. It’s a shame because I really like the Latuda and I hate experimenting with psych drugs. But it just needs to be done.

 

Bite the bullet.

A solitary blue

I think I’m in a serious rut. It’s the pain and the health…all bleeding into other aspects of my life. Taking it over.  It’s gotten to the point where is is just about all that I think about. Sometimes I do this afterwards when the physical problems get badly out of control. My mom said that I have spent the last few months defeated and feeling sorry for myself. I guess maybe that is true. I think more of it as just a period of being stuck. Like I’ve said many times before, just waiting for things to happen. Now that a lot of my physical problems are under control, I need to start getting a grip on my mental status. I might increase the Cymbalta back up to 2 a day. I had reduced it because I was getting those brain zaps and that was the only thing I could think of the could be responsible for it. But Dr. S remarked that I wasn’t supposed to be taking 2 at once at night, that that was wrong. So maybe if I take one in the morning and one at night then it will make things better. And maybe my mood will improve.

It doesn’t help that I don’t really have anything in my life to sufficiently distract me. My day consists of watching TV and movies and going out into the sun room to read and smoke cigarettes. Sometimes I go to the corner store…or wander into my moms room and talk to her for a bit. I also spend a good amount of time on the phone, with doctors and insurance companies. That’s about it. I need a job for many many reasons. The first, primarily, is to bring in some money. I feel so guilty for leaving Jon to be the sole provider. We have been financially drowning for a long time now and I haven’t been able to help at all. And now I have officially bled my parents dry of their cash so the pressure on Jon is getting even worse. Jon is so much better to me than I deserve. He very rarely makes remarks about how he is the only one taking care of us. And he never acts like he resents me. But I resent myself enough for the both of us, I’m sure. I have forgotten what it feels like to be proud of myself. To be successful. I can’t wait until I am bringing in money as well. Then I won’t have a mini panic attack every time there is something I need and Jon will get a much deserved break. I want him to get everything he has been putting off, like stuff for his drums. That will feel so good. I also need the job so that I feel useful. I don’t know where I want to work yet but I hope it is somehow helping people. My favorite thing that would happen would be to work for my big brother and his company, doing customer service. That would be a very happy situation for me. No having to get to know tons of strangers or feeling self conscious while I train, feeling good knowing that I am helping my family and even getting paid to do it! BUT, that is probably not going to be able to happen. Not for a while anyway. But a girl can dream!

Also having trouble with my social life. The majority of the time, the only people I hang out with are my husband and my parents and, once a week, my brothers. I try to keep in touch with my friends but some of them are making that difficult. I have a number of “friends” who can’t even be bothered to text me back when I reach out to them, which I try to do whenever I don’t feel too bad. I know that people are busy and have much more of a life than I do but honestly….how long does it take to text “hi” or “I miss you”? Let alone ask me how I’m doing, realizing how hard of a time I’m having, or even telling me about themselves. It is making me wonder if I should just cut off these friendships. Maybe I am just holding on to the past. Am I even worth having as a friend anymore? Sometimes I think the pain and depression has changed me so much that I don’t even know who I am. I try though.  It would be helpful if they would do so much as to make a partial effort. Or, God forbid, meet me halfway. Anyway, that’s not to say that all of my friends are like that. I still have many who are sweet and caring and manage to stay in touch with me even though they are crazy busy. I appreciate them so much and I wish I could hang out with them more. Maybe that is one of the things that will change when I see the pain doctor and get things in a more stable position.

Work and friendships. Those are what I’m going to be working on for the next month or so. Figuring out how to let go of what’s gone and making new things happen. Jon and I are having our 1 year anniversary in a few weeks! Married for our first year! Despite the stress and problems that we are going through, my marriage is probably the brightest thing in my life. I love my husband so much and he is everything to me. I lucked out to marry my best friend and even luckier that he turned out to be a wonderful husband. Speaking of, he is waiting patiently for me to finish updating so that he can play computer games after a long day at work. So I’ll only add a few more things.

Physically, everything is pretty much the same as the last time I wrote.  I am on day 3 of taking all the allergy medicines- the steroid inhaler, the Flonase nose spray, and the Allegra. My breathing is much easier which I like and so far I have not developed any thrush. But that seems to be the only change, there is still tons of drainage and I have to spit like 50 times a day. I’m going to give it a solid week to see if anything changes. Then I will write Dr. O and see if there is anything else to try.  I’m really itchy but that is probably just because of the pain meds. My mom said that I was sitting on the couch this morning, half asleep, and was intensely scratching my head. I guess Dr. C was right and that is how I got the cuts on my scalp! Body pain is still there and back pain but I have not had any headaches to speak of in over a week. I think. A while anyway.  And that is straight up wonderful. I’m trying to get into the new neurologist, Dr. A, but their office is really incompetent. I don’t know if I want to stick with that office as they are not making a very good 1st, 2nd, or 3rd impression. So maybe I will find my own neurologist and request a referral from Dr. C for whomever I select. The doctor’s office has apparently made him my official primary care physician instead of Dr. E and I should probably let him know. I am waking up multiple times a night but sleeping a decent amount. Still losing weight. Hair is falling out at a rapid pace. Other than that, most all is well!

Stability, work, and social life. That’s not too much to want out of life and I am going to work my ass off to get it!

Cautiously optimistic

Medication day today! Always a good feeling. Knowing that I will be in less pain for the next several days takes a lot off my mind. But I’m stressed as hell about what to do if I run out early. There’s no money for more Kratom or anything like that. I’ve got to be really good about making it last. Which should be way easier than it has been because things are still pretty good! I can’t completely relax; my health can turn on a dime.  And it can get way out of control in a matter of hours. But for now, I am pretty content! For the past week, the headaches have completely backed off. I think the newest dose of my Acetazolamide that Dr. C gave me is finally doing the trick. I still need to find a new neurologist but thank God I have Dr. C in the meantime. Otherwise I would have bashed my head into a wall a long time ago. So that is on the list of things to do: get new neurologist.  I am not sure why, but the wait list for neurologists is very long. It is hard to find one that is accepting new patients and even harder to get in in a reasonable amount of time.  I should handle that tomorrow.

I’m anxiously waiting for my next pain doctor appointment with Dr. S, which is on the 15th. I called to see if it would be possible for them to give me a call if someone cancelled their appointment, so that I could get in earlier. Apparently, they do not do that. Giant bummer, I feel like everything is hinging on this appointment. I desperately need a job but I can’t have one until I get on a medication regimen that makes me stable. Or as stable as I get, anyway. This Oxy is good for pain relief but I can’t depend on it. How much I take is directly connected to how I’m feeling and things are so up and down with me that my dosage is all over the place. I think I need an extended release medication for the pain that is always there and then a medication for breakthrough pain. For when things happen and the pain spikes. Migraines. Ruptured cysts. Back pain. Random bullshit like staph infections showing up in my face. It seems like there is almost always something or another going on.  So those are my ideas but Dr. S might have an entirely different approach. When we have a plan, then I can start living my life… hopefully. And I can stop being such a financial drain on everybody. Not to mention being bored out of my mind, sitting around the house all day. I truly cannot wait. I will be so much happier.

The insurance company and the  health coverage marketplace totally screwed me over. They are charging me $575 for my health insurance for October. When it is usually $375. The marketplace needed some verification regarding how much money Jon makes, which is our only income since I lost my job. I put off dealing with it while I was so sick but then called them a few weeks ago, and last week, to try to get it sorted out. The guy I talked to said that I was technically past the deadline but that he would make notes that I had been in touch and would be able to submit Jons check stub on Tuesday. He said that it would be fine. Then I tried to pay my premium yesterday and found out that they want an extra $200 now. After many many hours on the phone, I finally found out what was happening. The guy I talked to last time didn’t make any notes at all…or even mentioned that I had called. So they took away my tax credits because I missed the deadline which was on September 9th to verify my income. Bam, almost $600 without the credits. A month. It just doesn’t make sense to me… “Oh, you lost your job and don’t have any money? Okay, we’ll charge you $200 more dollars a month. That’ll help, right?”. Morons. After a giant fight with mom about it last night, I got things more or less straightened out today. I resubmitted my application over the phone and updated my income.  Now I have a new deadline to meet where I send in the check stub. My tax credits have been reinstated and my premium even lowered a little bit. But it doesn’t take effect until November 1st, which means I’m still on the hook for $575 for October. I have to sell my wedding dress to pay for it. I’m pretty sad about that but there is no way I can lose my insurance. It can’t be helped.

I’m surprised but grateful that the stress from all of that hasn’t made me sick yet.  Usually that is the first thing that happens when I get stressed out.  Perhaps my body is taking pity on me…or it’s just trying to drive me crazy with inconsistency. Whatever, I’ll take it. I am still dealing with medium to severe global body pain- pain in my joints, muscles, skin, nerves. That never really goes away. My back is hurting quite a bit so I’m hoping that Dr. S can finally get me scheduled to do some injections. I haven’t had any in at least a year and they really help. Something to look forward to. Ha, a needle in my spine! I can’t wait! Aside from the body/back pain there are really only 2 things that are driving me crazy. Constant weight loss no matter how much I eat. And my hair is falling out still. Really badly. I have to wash my hair tonight and I’m just dreading it. I don’t wanna be bald!! But there is nothing I can do about it so I guess I’ll just keep rolling with it. My eye infection is down to just a tiny bump that doesn’t bother me. I don’t know how to get rid of it completely….

As for the allergies, I am not really seeing a difference in how I feel regardless of the three new medications I’m on. I gave up on all of them for about a week while I was healing up from the thrush. But today I did the whole thing- the steroid inhaler with the spacer, the Allegra, the nasal spray, and my regular rescue inhaler. My breathing is easier but aside from that, I can tell no difference. I have had drainage all day and need to spit like every 10 minutes but the medicine hasn’t helped that at all. I’ll stick with it for a while and see if it is some kind of a cumulative treatment. But if I don’t see any improvement then I’m ditching all of this stuff. I’m already on like 13 different medications, I don’t need 3 more that are for nothing.

Dr. C asked me if I wanted to go back down to 10mg oxy or stay on the 20mg. I am of two minds about it. On one hand, I know that my tolerance is getting really high and that is a bad thing. It causes all sorts of problems. On the other hand, if things get bad again then I will not be able to change the dosage back to where it is now. You can’t change strength of pain medication too frequently. And I would much rather be in a position of having too much medication than not enough. When the pain is really bad then I go through the meds twice as fast and then I’m out for days. That’s kind of what I meant by saying this current medication is just too unstable. So I asked him to keep me where I was… I plan to stay put at that dosage until my appointment with Dr. S. He and I can decide where to go from there. If I need to be on nothing for a week or so and let my tolerance drop so that something else will be effective, then I will. It won’t be pleasant but I need for something to work.

I can’t wait to stop waiting.

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.

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.

“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.