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It’s a brand new day (Part 1)

A whole new picture. A whole new era. Tabula Rasa….Latin for “blank slate”. That’s what we are dealing with now.

Hello blog. I have missed you. I just looked over my last post. God, It has been 5 months since I have been on here. It’s amazing how much can happen in 5 months. Hell, that was last year. And 2019 is going to be a different one, I think. Lets see, since my last post…I have been overwhelmed by drugs, broken entirely, been committed to a mental institution twice, my grandmother Beason died, I have been taken off opiates, given a great pain team, and am in the process of being put back together again. And that’s just the highlights. Imagine all the little things you’re missing.

So…yeah. Glanced over my last post. I was super shiny happy on my new Oxy medication regimen. Well, we’ll have to make a long story short. I think this post is apt to be a long one and I don’t have the will to post any tiny details right now. The Oxy regimen was good…for a little bit. My body did what it does and became adjusted to my new dosage. And Dr. C couldn’t prescribe any more. I took what I needed to take to function and make it through work. I constantly ran out early, I looked for meds wherever I could find them, I took meds from others, I got early refills too many times and became suspect (the proverbial red flag), one at a time pharmacies and doctors started cutting me off, I became lower and lower on options. The tenuous hold that I had on the drug thing finally broke. In a remarkably short amount of time, I had crashed and burned and had no idea what to do next.

I suppose it was after all of this that came the breakdowns. The first one was on Jan. 8th 2019. Things had gotten flaky at work. Real flaky. I was either high on pills and not acting right or low/out of pills which made me really not act right. My health was in flames and I was doing things like listening to my boss but taking breaks to run to the bathroom and vomit blood. My boss was very not understanding or sympathetic. It was hard to deal with. Everything I was trying to hide got harder and harder to cover up. Finally it came to either I got a higher dose of pain meds or I would be fired for not being able to make work and do the hours they asked of me. However, only the pain doctor, Dr.S, could do that and I had an appointment with him on January 8th. I was hyper focused on the date. That was the date I could find out if I could continue my job, which had become everything, and keep my life going. I was so stressed out by what would happen on that date that I asked my parents to stay home from work and go to the appointment with me. I called the office to confirm the time. Instead, I was informed that Dr. S could not continue to see me as a patient. So not only did I have no appointment. I had no pain doctor. Which meant I had no job. I had no more income to help my family. I had no more anything. Kapow. Nervous breakdown.

(3 hours later)

I had to stop updating so that I could go to the hospital. Well that’s just me all over, isn’t it? I’ll try to finishing the update tomorrow.

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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.

 

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Cujo

Oh muh God, today is amazing!! Dr. C gave me the prescription plan that I have been looking for! I am SO unbelievably relieved and happy.

I made an appointment with Dr. C today so that I could discuss a few things with him. My cough and wheezing, kidney pain, my pain meds, and my mother-in-law needing follow up care.  I explained to Dr. C that the Oxycodone is just way to unstable for me. Up and down, up and down, running out early, and so on and so on. I don’t have any quality of life to speak of; no job, can hardly see my friends, hurts too much to enjoy going to shows, not able to work out or exercise.  I basically just hibernate in my room watching movies or hang out in the back while smoking and reading books. I was so disappointed that Dr. S still felt he didn’t have enough information to feel comfortable putting me on a prescription plan. It meant that the life I was dreaming of would have to hold on just a little while longer. Then it occured to me that Dr. C had more than enough information on me! He agreed that he did and we talked it out. It was decided that an extended release medication, for day to day pain, along with short acting medication for breakthrough pain was the way to go.  I gave him the list of extended release medications that I found out my insurance covered.  He dismissed the Tramadol ER immediately saying that my tolerance was too high for that to be effective. He also didn’t like Oxymorphone, which he said was Dilaudid. I was totally fine with that because Tramadol is weak and Oxymorphone didn’t work for me when I tried it. So he decided on Oxycontin, which is extended release Oxy. 20mg Oxycontin twice a day and up to four 15mg Oxycodone a day for breakthrough pain. Though I need to try and keep the Oxycodone at 2 per day, he said that I can take up to 4 if the pain is really really bad. Aman and hallelujah! I didn’t think it was possible but I finally feel like I have enough pain medication. Adequate pain medication. Like I’m totally covered. This means so many things I can have and SO many things I can let go of! No more Kratom, no more Vicodin, no more driving to Lakeway for Tramadol, no more meeting “M”, no more running out early, no more withdrawal, and no more pissing away money!! No more fighting with Mom or Jon! I am ecstatic! Even the little things, like knowing that I will not wake up in pain because I will have taken an extended release pill at night, has me totally over the moon. The relief is palpable.

Anway, there were other things that happened at that visit. We discussed the results of the CT scan that I had on my lung on Wednesday. Get this: what is in my lung is not scar tissue or an unknown nodule. It is a freaking lymph node! That’s it! I have been semi stressed about this and urged to keep an eye on it for the last 2 years and all because my lymph node is in a slightly different location than normal people.  Dr. C said there is absolutely nothing to worry about and I don’t need to “keep an eye” on it anymore. God, I love that man. He said that he didn’t see any pneumonia or bronchitis on the CT scan either, so I just have a regular cough. He prescribed me some cough syrup and it is doing the trick quite nicely.  My kidney was absolutely killing me this morning so he ordered a urine test to check the function and look for infection. The results came back and even though Dr. C didn’t write any notes on it, I’m pretty sure that everything was normal. I wonder why my kidney randomly does that? Just one of the many things that I will never know, probably. I also had all the lab work done that Dr. C requested last week, so that’s out of the way. Results came back on the CBC but  can’t interpret the findings. Gonna have to ask Dr. C to spell that one out for me although I’m sure that if anything were wrong he would have put a note on there telling me. I talked to him about seeing Sharyn for her “after fall” care and, good man that he is, he said he wouldn’t mind a bit. He needs her hospital records and then he can take care of her and give her the pain meds that she needs. That stupid nursing facility is barely giving her anything at all for her pain (and all the while is making her feel like a huge drug freak!). Screw that noise; she needs Dr. C. I talked to Sharyn for about half an hour and she is very excited at the prospect of meeting such a good doctor. She is going to get her records and make an appointment and I will take her to it. I’m so glad he doesn’t mind treating her- she really had no other good alternative.

My endocrinologist appointment is on Monday. I hope my test results just come back normal so that I can move on. But, if I’m remembering correctly, the last time I was there my test results were far from normal and required follow up visits and further testing.  I’m still on the Latuda, which they claimed was the reason for the abnormal results. I think? Maybe that was the rheumatologist. Ah, it’s too much to keep straight. After I have my visits and tests done then I will put the information in here and that will keep me from forgetting. Thanks again to my brother for creating this blog for me. I went to the nutritionist this morning. It really felt like a giant waste of time. I realized that I mostly wanted to see a nutritionist back when I couldn’t lose weight. Now I’m having the opposite problem and the doctor wasn’t all that helpful.  She bitched at me for not eating enough and told me to eat no fewer than 3 hours before bed so that I could properly digest my dinner. She also wants me to drink a protein shake at like 5pm every day. Not sure that I am going to go along with either suggestion. I like my routine. I was hoping that she could tell me how to best avoid wheat and soy, both of which I might be allergic to. But instead she totally glossed over it, didn’t answer me, and suggested I do a “3 day challenge” to see if I was really allergic to it or not. Luckily, Dr. C filled me in on the best way to do it when I saw him later. The nutritionist made an appointment for me to go back on November 30th but I think I’m going to cancel it. Like I said, it mostly just felt like a giant waste of time.

That’s what has been kickin’ around lately. It’s a brand new day and a whole new game. Hit it!

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Dead Zone

It has been a while since I updated. But there hasn’t been a whole hell of a lot to report.

I made it to my pain doctor appointment yesterday! And I didn’t even get lost or take 100 years in the parking garage. But the visit was severely disappointing.  After I left Dr. S’s office last time, he told me he needed more information before he felt comfortable setting any kind of prescription plan with me. So, while I was setting up the allergy testing, I called around to all my many other doctors and arranged for them to send everything to Dr. S. Records, test results, medications… everything. They all said that they were on it. And I never heard anything from Dr. S so I felt pretty good about it. Well, that’s not quite how things worked out. All the Dr. S had received was a rheumatology report from 2016 and a note from Dr. C’s office saying that I was looking at a different allergy specialist. That’s it. Nothing from the endocrinologist, the neurologist, my most recent test results from Dr. C; nothing. So we are still in the exact same position. He doesn’t have enough information to go on. Part of me is incredibly frustrated that Dr. S never told me that he hadn’t gotten anything. I have had 2 months waiting to go back in and see him, I could have gotten everything squared away if I had known. But I’m trying to let the anger go, there is nothing that can be done about it now. Also, maybe it wouldn’t have mattered. Dr. S wants my current results from all the specialists that I’m about to go see. Old records that basically say “Weird test results but we don’t know anything” aren’t really all that helpful. Dr. S thinks I have a lot wrong with me, especially from the neurological and rheumatology angle. Something like rheumatoid arthritis is what he is thinking.  While I don’t particularly want to have a disease like that….if it will explain things and can be treated then it is something that I can only hope for.  Answers, I am hoping for answers. And I am hoping for progress. I am bitterly disappointed that we couldn’t do a prescription plan.  I want a job so bad. I want stability the ability to function and live my life. I want to work out and be healthier. It’s all that I want. And now it still feels far away. Bitterly disappointed indeed. All I can do is try to move forward.

Something I want to mention in case it comes up again; on Thursday 10/18, I coughed up a huge solid chunk of blood. Dr. C and I are hoping that it was just from the dust and allergies at Sharyn’s house. But I need to keep it in mind and watch out for fevers, stomach pain, or chest pain. So far so good. I have developed a really bad productive cough. The stuff I’m coughing up is starting to taste bad and turn dark. So I’m pretty sure that I have bronchitis again. Dr. S suggested that also as I coughed my way through our appointment. I sent a message to Dr. C and am waiting for antibiotics or whatever. Between the dust, allergies, and my smoking, I really don’t want it to get out of hand and turn into pneumonia or something. Still having quite a bit of drainage and spitting. Huge success: ever since I started getting treated for allergies, I have not had so much as a headache! Not for the last 2-3 weeks. It’s a flippin’ miracle! Those headaches and migraines made my life a living hell. I have stopped the Acetazolamide for the time being to see if I really need to be on it. It makes everything taste weird and it is just more medicine on top of all of my others. If I can ditch it, I will be totally psyched! My BP has started getting a little low so I lowered my Labetalol back town to 2 a day, from 3. That is a relief. I have been out of muscle relaxers for a while, like 4 days, so I have just been taking Clonidine to sleep. It is pretty effective and works well but the muscle relaxers will be filled again tomorrow. I’m glad, it makes for a more pain relieved morning. Dr. C sent in 270 of them which is awesome but it is the lower dose of 4mg pills. Hopefully by the time they run out it will be time for the insurance company to fill the 6mg ones again. I am still losing weight rapidly. Roughly 1 pound every 2-3 days at this point. I am hoping that the gastroenterologist will be able to shed some light on that, as it is really starting to concern me. I am throwing up randomly but not enough to really cause the kind of weight loss that I’m having. That’s about it for the physical report.

The pharmacy is mad at me for refilling my pain meds too early too many times. So, I’m back to strictly only filling them every 12 days. That shouldn’t be a problem. We can’t afford to get them before insurance will pay for them anymore anyway. I asked Dr. C if he could extend Jon’s medication prescription to a two week supply instead of one so that I can just pick up our meds once every few weeks. I hope he doesn’t mind because that would make things easier.  Oh! Dr. S said that we can set up my back injections! So I’m gonna get that started. On a down side, I found out that he doesn’t sedate for them. At all. He said it’s not safe and told me a story of someone who almost died because of sedation. I’m not happy about that but I understand. Dr. S said that he is awesome and that it won’t be a big deal. I am trusting him on that. Dr. C has put in orders to get some blood work done. Kidney and liver function tests, and stuff like that. I need to go in and get that taken care of. Pretty much done updating. About to go out and call the Nutritionist, the endocrinologist, and call to set up my MRI. Gonna have to write all of this down. I’m gonna be busy for the next few months….

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Bag of bones

Ahhhh, the worstest thing ever happened today. The pain doctor appointment that I have been waiting for, dreaming about, and thinking about nonstop was at 10am. And I missed it. Damn it all. A few days ago I got a text telling me “You have an appointment with the doctor on Monday 10/15/2018 at 2pm!” And I thought “great”! You’re damn right I do! There was no doctors name on the text and no clinic location or name. And it occured to me that I should call Dr. S and confirm that that was the correct time for my appointment. But, true to form, I procrastinated and put it off. I had the text telling me, didn’t I? It even occurred to me at 9am when I woke up, one of the many times I woke up, that I should call and just make sure. But I decided to go back to sleep instead. I tried to call at noon but the office was closed until lunch. So I called back at 1pm and confirmed that the appointment was at 2pm. She replied “Ummm well, actually it was at 10am. We don’t send texts but we left you a voicemail a few days ago.”. What the hell?!  Why didn’t I get any voicemail from them? And who texted me last week? Well it turns out that I made an appointment with the Psychiatrist like 3 months ago, coincidentally for the same date, and totally forgot about it. Freaking. Lame. Well, what could I do? I asked for the next available appointment which was the 22nd. So damn disappointed. Monday, the 22nd, at 1:30pm, for the record.  Come hell or high water, I am getting to that appointment. There is one silver lining and that is that Jon didn’t have to walk to work on his broken leg in the cold and rain.  I’m glad about that but that is about all. Well, and that I found out before I made the aggravating and confusing trip down there. That would have been awful. But not only did I miss the pain doctors appointment, but I missed the psych appointment too and for really no good reason except my crappy memory. The main office is way down south, way way down south. And there was no way that I was going to get there in time, not in the current weather. Of course, when I got a call back to reschedule then they reminded me that I had made the appointment with the north office which is 15 minutes away. I could have made it, no problem. If I had remembered. So now I missed both appointments and I owed 2 missed appointment fees. What a crappy day.

The best thing that happened today was that Dr. C sent me a prescription for 15mg oxy. I was getting in too deep with those 20mg ones but I wanted to have some in reserve in case things got bad again. Especially while I was out of town. My tolerance is ridiculous right now. I only let it go on as long as it did because I thought that I would be seeing the pain doctor today and would get started on something else.  But when that didn’t happen then I didn’t want to spend one more minute at that high dose. I need to start backing off. Dr. C was pleased that I am going backwards. I’m happy that he agreed to 15mg. I was worried that he would want to drop it back down to 10mg. While I would have understood, it would have been a lot harder. But he said that 15mg was a good in between dose. So yay! Dr. C is a god send.

Sleeping last night was a complete nightmare. My muscle relaxers weren’t really having much of an effect for one thing. Neither was my Clonidine. It seemed like nothing would make me tired. And, for some crazy reason, my muscles were freaking out. The would get all bunched and jerky. I was kicking and thrashing around. I couldn’t figure out what was wrong. It reminded me of what people say when they talk about withdrawal and “kicking the habit”. But I wasn’t just kicking and I wasn’t in withdrawal. It is not the first time this has happened to me but it was probably the worst. I tried this leg cramp PM medicine, I tried more muscle relaxers, I tried more Clonidine, I tried a really hot shower to relax my muscles. Hot showers at 2am. Fun. It worked for a little bit but I still woke up like every 90 minutes. Even though my muscles felt full of angry energy, I was completely exhausted. I am hoping so hard that it doesn’t happen again tonight. My muscles have been fine all day so maybe it was just some fluke thing.

Everything else is going alright. The allergy medicine isn’t really helping but I have noticed that my headaches have been next to non existent.  If it was just allergies mostly this whole time, I am going to be wicked pissed. I know I have the severely increased spinal pressure but I don’t think that that is all of it. Anyway, I am enjoying the vacation. I still have a little bump on my eye from that infection. I should start back up with the compresses. I am still losing weight and have lost another couple of pounds. That makes 46lbs since May. I was feeling good enough to go visit Marina tonight for a while, which was a wonderful treat. I don’t get to see my friends much anymore. All in all it is a good time to start backing up on the pain meds. My back is hurting and the sudden weather change certainly isn’t helping it. It went from hot and dry to freezing and raining over night. Dropped at least 30 degrees. That always wreaks havoc on my body, my back especially. But it’s not too bad today.  Dr. C has gotten started on all the tests and referrals that I need. Gonna start the ball rolling on that tomorrow.

That’s about everything for now. Just have to wait one more week for the pain doctor and the plan.

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Upkeep

God, I feel so sorry for Dr. C- being my primary care physician is hard work. My mom just had a talk with me about things I need to do before January. As of right now, I have surpassed my out of pocket maximum on my insurance plan. So everything I have done and every doctor I see and every test I have, is free until January 1st, 2019. And there is a lot of stuff that needs to be done. I just sent a laundry list to Dr. C telling him everything I need.

First of all, I am selecting a new neurologist. Dr. A and her office have failed to impress me, or even make me content, a single time since I started trying to get an appointment there 6 months ago. I’m done with them. Tomorrow I will begin the process of seeing which neurologists are covered by my insurance and then reviewing those doctors to try to find a decent one. When I make my selection, which shouldn’t take too terribly long, then I will send a referral request to Dr. C letting him know which one I picked. Second, I probably need to see a gastroenterologist. I have wicked heartburn, which has previously done things like burn and scar my stomach and esophagus, and it still flares up and gets out of control sometimes. I have to take 3 Nexium a night to keep it under control and that is getting really expensive. I wonder if there is a more efficient prescription medication that insurance will have to cover. That would save like $30 every 3 weeks. I’m also having this nervous tick that gets a lot worse when I am on my pain meds….it’s like of like a snort, cough, throat clearing kind of thing. I can’t remember which doctor suggested this but it I was told that this could be a sign a gastric reflux. So I should probably get that checked out. If I need an endoscopy or anything like that, then I need to have it done before the new year.  Plus I have been nauseous and vomiting for like what…3 or 4 weeks now? Sometimes I throw up 4 or 5 times a day and sometimes only once. Sometimes, for a day or so, not at all. But yesterday I puked my ever living guts out for no discernable reason whatsoever. At first I thought it was being caused by the migraines. Then I figured I had some kind of stomach bug. Then I thought that it was a side effect of the staph infection in my face and the antibiotics. Then I thought maybe I was smoking too much. Then I thought maybe I was taking too  much pain medication. But little by little, everything keeps getting ruled out.  Now I don’t know what is left but I know that it is inconvenient as hell. I have just been taking anti-nausea meds everyday. So seeing a gastroenterologist probably isn’t too bad of an idea. Third, the is that nodule in my lung, I think the left lung, that I need to keep an eye on. I don’t think I have had an MRI to look at it in over a year. When they did the second MRI to compare the size and shape from the first one, they said it hadn’t changed and that I was fine. I just want to make sure that it stays that way. Besides, the chances of having lung cancer are like 1% if you are 30 years old so I am probably just being paranoid. But still, keeping an eye on it won’t hurt and like I said, it’s free. Fourth, I need to see both the endocrinologist and the rheumatologist. Both the allergy specialist, Dr. O, and the pain doctor, Dr. S, recommended that. Just to check and see if there are any changes from the last time that I was there which was well over a year ago. I am hoping I can see Dr. B and Dr. C, which are the two doctors that I have seen before. They will have my records and everything. Though I am probably in for a lecture from both of them. I was supposed to stay in touch and get checked up regularly. Well for crying out loud, I have too much on my plate for just casual check ups! I need to make sure that my autoimmune results are still all negative, even though the initial tests suggest that they are positive. That’s gonna be a pain. They are gonna tell me that I may have tested positive for Lupus and that I need to have further testing done. Then I will stress about it for days and get the tests done and it will be a huge pain in the ass. At which point they will probably tell me that I don’t have Lupus after all. At least that is what I am assuming will happen, that’s what happened last time. But you never know, sometimes these things change. And it would certainly explain a hell of a lot. I want to see if I am still testing positive for Scleroderma. Which I have no symptoms of. If you have a disease but no symptoms of the disease then do you really have the disease? The proverbial tree in the forest question for health freaks. I also need to make sure that I haven’t developed Cushings. That looked so certain a few years ago. I was tested repeatedly for it, which includes filling up a jug with your pee and keeping it in the fridge (ugh!), and they always came back negative. But Dr. Daghestani, from a long time ago, said that it wouldn’t surprise him if I developed it at some point in time. It would explain a lot. Lastly, I was thinking about maybe seeing a nutritionist, since it would be free and all. And it would be helpful to talk to her about how to form my diet since I have learned about all the stuff that I am allergic to. Buuut, with all this other stuff on my plate, I don’t know if that one is going to get done.

That’s the list I sent to Dr. C. Like I said, plenty of work to do with me as a patient. At least he doesn’t have to deal with everything I need taken care of, like back injections and stuff. I also asked him if he could think of any tests or blood work that we should do, just to make sure everything is okay. It makes me laugh to think about people who maintain their health by going in for a physical once a year. Lucky bastards. Maybe Dr. C will have some ideas about my tummy trouble, that would be nice. It is going to be hard to take care of everything while trying to take care of Sharyn at the same time. But it will just have to be managed. We found out today that Sharyn has pneumonia to boot and that she is going to spend a week in a live-in facility for physical therapy and stuff after she gets out of the hospital. But we still have to stay out at her place to take care of her dogs. It would be so much easier if we could just bring the dogs home with us but we have no way of knowing how Annabel would react to that. And the drive is just too long to bring the dogs home, see, and then take them back if it doesn’t work out. Oh well.

I talked to Dr. O today about the allergy meds not really having an effect. He recommended an antihistamine nose spray to replace the Allegra. But he also said that it has a bad taste to it. Normally I wouldn’t be such a baby about something as minor as a bad taste but with all the nausea and throwing up, I am really sensitive to bad tastes right now. Plus I was wondering if there weren’t any prescription allergy medications that I could try. They would probably be much more effective and covered by insurance to boot. Getting Flonase and this other nasal spray every few months is going to start adding up. Dr. O also recommended salt water rinses for the drainage.  I have never done that before but I am totally not psyched about it. Don’t know if I’ll do it or not….the spitting isn’t that big of a deal. He asked about possible infections but I was happy to reply in the negative to that one! I don’t often get to say that with confidence.

As these things get scheduled and the results come in, it looks like I will have a lot to write about. It seems like too much to ask for there to be no bad news. How about no new news? Think I could get away with that?

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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.

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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!

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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.

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Relief

Many many things are disappearing.  The thrush on my tongue disappeared a day or two after I stopped the steroid inhaler. The pain in my mouth went along with it. Dr. O sent me a different inhaler and a spacer to use and something for the thrush as well. I’ll give it a try.  No headache today which is crazy nice. No more bruises, blisters, or anything on my hands or feet. The cuts on my scalp are almost all gone except for one. No more fever. No more runny nose even though I haven’t been taking the Allegra. Tiny little bump on my eye but it doesn’t hurt and I barely notice it. All in all, much improvement. It’s all going away almost as quickly as it came on. Still have a lot of body pain but it has lowered enough for me to notice the pain in my back. Which has been completely obscured for the last 3 or 4 weeks. It’s not nice to have it back but is good that the other pain is low enough for me to even notice it.

I ran out of muscle relaxers last night. Sleep is going to be hard to come by. I wrote Dr. C about it but haven’t heard anything back yet. I kind of needed his help to get around the insurance company. They won’t pay for any more muscle relaxers until November. But if we change the dosage then they will have to fill it. I don’t know how Dr. C feels about that so I guess we will see what will happen. At least I still have the Clonidine which makes me kind of sleepy. Don’t really feel much like writing but wanted to update what is going on.