January 2010


I’ll start with my appointment since I was actually there for it (they managed to squeeze E in with the orthopedic surgeon at the same time I was with my doctor… they are in the same office).
My appointment started a bit late, and my meds stopped working while I was in the waiting room, luckily they have this cool coffee/tea brewer in the waiting areas (there are two different waiting areas, depending on which doctor you are a patient of decides which side you are on) so I was able to make myself some coffee and get some caffeine in. I have to eat to take any of the meds that help my headaches, so I had to wait awhile to take them, thankfully I was able to slow the headache enough with the caffeine to help keep it from turning into a migraine. I kept my eyes closed most of the time I was sitting in the waiting room too. I was up over 100lbs again when weighed, and wearing about 5 lbs of clothing and shoes… so I probably weigh about 98lbs again finally! The nurse did the rest of my vitals when we got into the exam room, and I was at 101.4 for my temperature, my O2 levels were normal, my blood pressure was 124/74, and my heart rate/pulse was my normal 94… so I still have unexplained tachycardia. After going over my medications with me the nurse got my rheumatologist and I had my appointment with her. First she looked at what’s been going on with me and asked how my headaches were so I filled her in on them, and the thing with my eyes. After that she had me sit on the exam table so she could check my eyes, listen to my lungs and heart, and do a general exam. My lungs sounded great, my eyes looked fine (she used three different instruments to look in them, the last one was extremely bright and painful), the vessels in my eyes look fine, and everything was fine with the exam except for my tachycardia (fast heart rate), we still can’t find a reason for that (I’ve had EKGs, CT Scans and and Echo cardiogram – there is no obvious physical problem with my heart other than a very minor murmur), and she thinks since I haven’t had any seizures that it’s just my lupus doing a massive headache flare rather than joints. The fever lends to that conclusion as well. She said to pick up tracking my blood pressure, pulse and temperature again, as we stopped when I started dealing with the headaches. Also, she said Excedrin would be a good way to go with these headaches, but I have a bad history with Excedrin making me ill, so we are continuing with one alleve every 12 hours, 1/2 vicodin every 3 hours, and a flexiril every night when I go to bed to help me sleep through it. She said she doesn’t like to do MRIs on lupus patients unless there are other neurological symptoms besides headaches since lupus flares can cause nasty headaches. If these don’t let up and I’m still having issues in a few weeks then I’m supposed to call about them because she wants to make sure they don’t continue too long. We are to keep an eye out for seizures and signs of seizures, and if my headaches start changing at all (so far they’ve been consistent for nearly three weeks) I am to contact her immediately. Also if i start having numbness in any part of my body (which could signal a stroke) I need to get checked out immediately. I don’t need to see her again until May unless something seriously changes, so that’s a relief, especially since there for awhile she was trying to get me in every month to see her. My MIL has been trying to get me to do medical marijuana for the pain and the weight issues, so I brought it up to my doctor today and she said she can’t prescribe it because she has a job working for the government as well, but that she is not against it and if I am comfortable with it to go ahead and find a doctor who will prescribe it and use it. Her other remark was “it’s not going to cause harm and it could help, so if you want to try it you can.” She told me where I should be able to find a doctor who would prescribe it, and give me a medical marijuana card, if I decide to give it a try. I’m not sure if I will try it as being around people smoking marijuana gives me headaches, but we have discussed possibly making brownies or other foods with it for me instead, which the doctor agreed to as well. She prescribed my blood pressure medication for my Raynaud’s again, and told me to call when I need my pain pills again. I don’t need any labs done between now and my next appointment, and everything looked great last time she had any labs done. 🙂 So all organs (other than my heart) are functioning normal still, which is awesome news! Oh also, I asked about adding another treatment in and she said that at this point it would just give me side effects and not help, that unless a new treatment comes out or a cure is found I can expect a certain amount of fatigue and joint pain the rest of my life.
Now E’s appointment (which I wasn’t around for since they squeezed him in early). His summary is “We just talked about my hip.” The doctor looked at the xrays that were done last May and said E needs to have a MRI done on his hip so they can look at the damage better, and figure out if he needs a hip replacement or if they can shave down the bones in his hip to get them into the right shape again and take care of the bone spurs in his hip. Unless there are major changes in how they deal with hip problems like this he will have to have a hip replacement at some point in the future. We don’t know when we’re going to be able to do the surgery, and we’re going to have to have help just to do the MRI at this point. E is unsure if it was worth him going to the orthopedic surgeon at this point since we can’t afford him taking 3 months off of work post surgery, but at the same time my feeling is we needed the second opinion to find out what we are looking at with his hip, as well as to find out options. We can’t keep having him in this much pain either, so we’ll see what happens… we will likely have to have a room/housemate or move in with family to be able to even consider the surgery, but unfortunately if he’s out of work we lose our insurance due to not being able to pay premiums, so that’s a sticky point we are discussing as we’ll have to pay for surgery out of pocket unless he has his surgery done right after work pays for his premiums so they are covered, and all medications he’s on, etc. will be out of pocket. It’s unlikely we can do this before I have my disability pay even if we do move in with family or have a housemate. :/ We’ll keep looking at options and discussing what we want to do. We have a paper from the doctor (paperwork from Walmart that they require) saying E can take “x amount of time” (a day I believe) off each week without it affecting his job, so hopefully management will approve that… so it will help his hip, and keep him from losing his job over the time he has to take off for his hip.
I think I’ve covered all the bases about the appointments, so I’m going to go rest some more now.

I’ll start with my appointment since I was actually there for it (they managed to squeeze E in with the orthopedic surgeon at the same time I was with my doctor… they are in the same office).
My appointment started a bit late, and my meds stopped working while I was in the waiting room, luckily they have this cool coffee/tea brewer in the waiting areas (there are two different waiting areas, depending on which doctor you are a patient of decides which side you are on) so I was able to make myself some coffee and get some caffeine in. I have to eat to take any of the meds that help my headaches, so I had to wait awhile to take them, thankfully I was able to slow the headache enough with the caffeine to help keep it from turning into a migraine. I kept my eyes closed most of the time I was sitting in the waiting room too. I was up over 100lbs again when weighed, and wearing about 5 lbs of clothing and shoes… so I probably weigh about 98lbs again finally! The nurse did the rest of my vitals when we got into the exam room, and I was at 101.4 for my temperature, my O2 levels were normal, my blood pressure was 124/74, and my heart rate/pulse was my normal 94… so I still have unexplained tachycardia. After going over my medications with me the nurse got my rheumatologist and I had my appointment with her. First she looked at what’s been going on with me and asked how my headaches were so I filled her in on them, and the thing with my eyes. After that she had me sit on the exam table so she could check my eyes, listen to my lungs and heart, and do a general exam. My lungs sounded great, my eyes looked fine (she used three different instruments to look in them, the last one was extremely bright and painful), the vessels in my eyes look fine, and everything was fine with the exam except for my tachycardia (fast heart rate), we still can’t find a reason for that (I’ve had EKGs, CT Scans and and Echo cardiogram – there is no obvious physical problem with my heart other than a very minor murmur), and she thinks since I haven’t had any seizures that it’s just my lupus doing a massive headache flare rather than joints. The fever lends to that conclusion as well. She said to pick up tracking my blood pressure, pulse and temperature again, as we stopped when I started dealing with the headaches. Also, she said Excedrin would be a good way to go with these headaches, but I have a bad history with Excedrin making me ill, so we are continuing with one alleve every 12 hours, 1/2 vicodin every 3 hours, and a flexiril every night when I go to bed to help me sleep through it. She said she doesn’t like to do MRIs on lupus patients unless there are other neurological symptoms besides headaches since lupus flares can cause nasty headaches. If these don’t let up and I’m still having issues in a few weeks then I’m supposed to call about them because she wants to make sure they don’t continue too long. We are to keep an eye out for seizures and signs of seizures, and if my headaches start changing at all (so far they’ve been consistent for nearly three weeks) I am to contact her immediately. Also if i start having numbness in any part of my body (which could signal a stroke) I need to get checked out immediately. I don’t need to see her again until May unless something seriously changes, so that’s a relief, especially since there for awhile she was trying to get me in every month to see her. My MIL has been trying to get me to do medical marijuana for the pain and the weight issues, so I brought it up to my doctor today and she said she can’t prescribe it because she has a job working for the government as well, but that she is not against it and if I am comfortable with it to go ahead and find a doctor who will prescribe it and use it. Her other remark was “it’s not going to cause harm and it could help, so if you want to try it you can.” She told me where I should be able to find a doctor who would prescribe it, and give me a medical marijuana card, if I decide to give it a try. I’m not sure if I will try it as being around people smoking marijuana gives me headaches, but we have discussed possibly making brownies or other foods with it for me instead, which the doctor agreed to as well. She prescribed my blood pressure medication for my Raynaud’s again, and told me to call when I need my pain pills again. I don’t need any labs done between now and my next appointment, and everything looked great last time she had any labs done. 🙂 So all organs (other than my heart) are functioning normal still, which is awesome news! Oh also, I asked about adding another treatment in and she said that at this point it would just give me side effects and not help, that unless a new treatment comes out or a cure is found I can expect a certain amount of fatigue and joint pain the rest of my life.
Now E’s appointment (which I wasn’t around for since they squeezed him in early). His summary is “We just talked about my hip.” The doctor looked at the xrays that were done last May and said E needs to have a MRI done on his hip so they can look at the damage better, and figure out if he needs a hip replacement or if they can shave down the bones in his hip to get them into the right shape again and take care of the bone spurs in his hip. Unless there are major changes in how they deal with hip problems like this he will have to have a hip replacement at some point in the future. We don’t know when we’re going to be able to do the surgery, and we’re going to have to have help just to do the MRI at this point. E is unsure if it was worth him going to the orthopedic surgeon at this point since we can’t afford him taking 3 months off of work post surgery, but at the same time my feeling is we needed the second opinion to find out what we are looking at with his hip, as well as to find out options. We can’t keep having him in this much pain either, so we’ll see what happens… we will likely have to have a room/housemate or move in with family to be able to even consider the surgery, but unfortunately if he’s out of work we lose our insurance due to not being able to pay premiums, so that’s a sticky point we are discussing as we’ll have to pay for surgery out of pocket unless he has his surgery done right after work pays for his premiums so they are covered, and all medications he’s on, etc. will be out of pocket. It’s unlikely we can do this before I have my disability pay even if we do move in with family or have a housemate. :/ We’ll keep looking at options and discussing what we want to do. We have a paper from the doctor (paperwork from Walmart that they require) saying E can take “x amount of time” (a day I believe) off each week without it affecting his job, so hopefully management will approve that… so it will help his hip, and keep him from losing his job over the time he has to take off for his hip.
I think I’ve covered all the bases about the appointments, so I’m going to go rest some more now.

So I haven’t posted any “real” posts in awhile, as in they’ve been fun posts mainly, when I have posted anything. I’ve also been quiet online, I’ve played around on facebook, and chatted on and off with a couple of close friends, but more or less I’ve been quiet and not around a whole lot. Part of this is because a friend bought a collection of the entire Harry Potter series for me, and I’ve been reading them. The other reason isn’t as fun and is more serious. I’ve been having migraines. A bit before Christmas I cut my dose of my main lupus medication down so I was taking one pill a day rather than two. This has been discussed with my rheumatologist, and I do it when I don’t have enough pills to make it through to when we can afford my next prescription or when I have gone several days with little to no appetite and need to start eating more again. This time it was because my prescription at the pharmacy was going to expire while she was out of the office and before my insurance would cover another refill (yes, I finally have insurance!), and because the pharmacy won’t take another prescription for the same medication until after the previous one has expired. So I was going to be unable to fill my prescription at the time I was going to need the refill. The big issue is that when I cut my dose down I’m prone to headaches and migraines. I had been doing okay with my dose cut down (minor headaches, but nothing bad) so I kept it down like that hoping to keep eating and gaining weight back. Right after the first of the year I suddenly got hit with migraines, after having just minor headaches for over a week (I normally have migraines within a day or two of cutting my dose down), and I started back on my full dose of my lupus med. My migraines stayed for 3 or 4 days, then went back down to really bad headaches that weren’t quite migraines. Normally going back on my full dose gets rid of headaches entirely within 3 or 4 days. This time, I have continued to have head pain for pretty much the entire time since t he first migraine struck. I’ve had a few hours of no head pain, but otherwise I’ve got a constant headache, ranging from there just a little bit to full blown migraines. Even vicodin isn’t ridding me of the pain entirely. I’ve started back on alleve (I’d stopped taking it due to my digestive issues, and found it was part of the cause, though not the entire reason for all the issues) and take one every 12 hours or so. Even with both of those pain meds the headaches are there consistently, they just vary in severity. On Tuesday I noticed my left eye was red (again)… just about the entire white of my eye was blood red. This was not the first time I’d noticed this since the headaches started, but I hadn’t put them together until Tuesday. It took two days for my eye to go back to normal, and it is normal still today, it cleared up yesterday. Hopefully it will stay clear until I see my doctor next Tuesday, though I’m not sure it will. Sometimes it’s one eye (the left one this time) sometimes it’s the other, and sometimes both do it. I’ve noticed this over the past 15 months or so, but it’s usually a very rare occurrence, not one that happens 3 or 4 times in a 3 week period. I called my rheumatologist’s office on Tuesday and left a message about the headaches (before I noticed the eye thing), and didn’t get a response, then I called again Wednesday and mentioned the eye thing and they called back and told me they were calling in a prescription for pain meds for me, and that there was no big emergency, they could wait to see me until my appointment next Tuesday morning, but I CANNOT miss that appt, they have to see me. I’m glad, because I am not sure how much longer I can live with these headaches. They’ve had me in tears multiple times (which is how you can tell the pain is really bad, since not even having cysts burst puts me in tears anymore, and that’s some pretty major pain) and I actually was crying to E at one point that I wasn’t sure how much longer I could live with them. I’ve also had a couple of nights this week where I’ve been on the couch and all I can do is lay there and moan and cry and whine. I’m begging anyone who can possibly hear me (usually just M) to somehow put an end to this pain, because it literally feels like my head is exploding and imploding at the same time and my head is being torn apart. Even with vicodin and alleve. I’m taking vicodin often enough that I’m constantly woozy from it, and sleeping a lot. I take 1/2 pill every 3 to 4 hours… that’s a lot for me since normally I take 1/2 pill every 6 at my most frequent dosing… but the headaches start getting worse at that 3 hour mark. (Yes, I am still within the doctor’s prescribed dose taking them how I am.) I really hope she has some answers for me on Tuesday, because this is really wearing on me, and I’m not sure how much longer I can go. 😦

Here’s a picture of my eye when I realized how it looked on Tuesday:

You can click on the picture to view it larger… the medium size doesn’t show just how red my eye was very well. I highly recommend doing so.

So Busted Kate at Busted Plumbing came up with a new idea… “Busted Libs” and asked her readers to take part…. that’s what this post is. (I’ll do an update on me post later on) If my readers want to do this please go back to the post that this puzzle came from and put your link in as well so everyone can see yours too! 🙂

Busted Libs Button

The Rules: Copy and paste this section on to your blog. Fill out the blanks before you insert your words into the story (no peeking ahead!). I’m going to put the story in white so you won’t be tempted (let me know if that works ok for cutting and pasting!). Show your words (with the story still in white) first, and then re-post with the story in black (so everyone can see your masterpiece!). Finally, include the Mad-Awesome Busted Libs Button!

Been a while since school? This might help:
Noun: Name of a person, place or thing. For example – books, tuna, Dennis, butterfly.
Adjective: Word that describes someone or something. For example – smart, interesting, cold, funny.
Verb: An action word. For examples – sleep, run, hop, skip.
Adverb Word that tells how something is done; it modifies a verb, and usually ends in -ly. For example – include quickly, softly, speedily, carefully.

1. An Emotion
2. An Emotion
3. An Emotion
4. Body Part
5. Body Part
6. Adjective
7. Color
8. Adjective
9. Adverb
10. Adverb
11. Verb
12. Famous Celebrity
13. Adjective
14. Plural Noun

Your First Visit to the Reproductive Endocrinologist
Your first visit to a Fertility Specialist, also known as a Reproductive Endocrinologist (RE), can be [—] (1: An emotion). But don’t worry! Your RE can be your first step in finding both the cause of and solution to your infertility. Infertility problems can make you feel [—] (2: An emotion) or [—] (3: An emotion), however a good RE will take time to address these feelings. The RE may then do an examination of your [—] (4: Body part) visually or by using an ultrasound. The RE may also examine your partner’s [—] (5: Body part) for any signs of abnormality. The doctor will ask you some pretty personal questions, like if your cervical mucus is [—] (6: Adjective) and (7: Color), and if your menstruation looks [—] (8: Adjective). The doctor may suggest that you have intercourse [—] (9: Adverb) rather than [—] (10: Adverb), and for you to [—] (11: Verb) after intercourse. And don’t feel bad if you have fertility challenges, even famous celebrities like [—] (12: Famous Celebrity) have received infertility treatment. The most important is to keep a [—] (13: Adjective) attitude, and turn to your [—] (14: Plural noun) for support. Good luck in your journey!

Here are my choices and the puzzle all filled in! 🙂

1. An Emotion – Depressed
2. An Emotion – Joyful
3. An Emotion – Enraged
4. Body Part – Elbow
5. Body Part – Knee
6. Adjective – Funny
7. Color – Orange
8. Adjective – Pretty
9. Adverb – Craftily
10. Adverb – Angrily
11. Verb – Run
12. Famous Celebrity – Alanis Morrisette (I confess the only reason I could even think of her name is because she was on a tv show we watched recently – I’m bad at naming celebs lol!)
13. Adjective – Itchy
14. Plural Noun – Cats

Your First Visit to the Reproductive Endocrinologist
Your first visit to a Fertility Specialist, also known as a Reproductive Endocrinologist (RE), can be [Depressed]. But don’t worry! Your RE can be your first step in finding both the cause of and solution to your infertility. Infertility problems can make you feel [Joyful] or [Enraged], however a good RE will take time to address these feelings. The RE may then do an examination of your [Elbow] visually or by using an ultrasound. The RE may also examine your partner’s [Knee] for any signs of abnormality. The doctor will ask you some pretty personal questions, like if your cervical mucus is [Funny] and [Orange], and if your menstruation looks [Pretty]. The doctor may suggest that you have intercourse [Craftily] rather than [Angrily], and for you to [Run] after intercourse. And don’t feel bad if you have fertility challenges, even famous celebrities like [Alanis Morrisette] have received infertility treatment. The most important is to keep a [Itchy] attitude, and turn to your [Cats] for support. Good luck in your journey!

*snort* (Yes I snort when I laugh) I think everyone can tell I didn’t look at anything relating to the puzzle (including the name) until after I had already picked out all my words. 🙂