Note: I have not made this, I do not have my card (yet), so this comes from someone with a card, whose info I am passing on after I mentioned them to someone and they asked for the info!
Everything in italics comes from my friend.

I was prescribed it for the chemo nausea & vomiting so my friend helped me make edibles using olive oil (well he gave me his recipe for cannabutter and I modded it) ~~~ so I wanted to let you know, it’s easy to make oil from it and if you use olive oil it’s much healthier than butter (and also easier to eat if you have issues with dairy).
It needs to be simmered in fat because it’s fat-soluble (if you make tea with it for example the cannabinoids won’t bind to the water so you can’t absorb it). So … if you take a half a handful of green, throw it in a pan and cover it with olive oil and then simmer for about 3-4 hours… and then strain off the green (I used a cheesecloth-covered fine mesh strainer) and use it in cooking. 1 Tbs (tablespoon) seemed to be a HUGE dose for me… 1.5 tsp (teaspoon) gave the medicinal benefits without knocking me right the eff out if you kwim… and 2 Tbs (about the amount in a muffin, if you use a regular muffin recipe but substitute cannabutter/oil) knocked me **completely** out for 12 hours…

I hope this is helpful for those interested in using cannabutter.

My wonderful husband is currently working on the final touches that I want done to get the blog ready for unveiling (a couple of addons I wanted and was unsure how to get until he just showed me, because I was trying to do it the complicated way). The new location is centralhive.com/autoimmunelife and it should be that for quite some time so we don’t go through me moving again. Centralhive is a domain we pay for every year and it’s just been sitting around gathering dust, so we decided we might as well put it to some sort of use. 🙂

Ok, let me preface this by saying I’m in the middle of my period, and it started out of nowhere, through birth control and with a short cycle…..
Over all I’m doing pretty well with the miscarriages. I’m definitely a ton better than before Christmas, and so on. However, I should be somewhere in my 9th month of pregnancy now if I hadn’t had the first miscarriage, and although overall I’m doing ok with that fact, it still stings at times. I would have been due somewhere right around the last week of February if I’ve done the math right the many, MANY times I’ve done it. It isn’t easy to realize that fact, but it doesn’t hurt as much as I would have expected it to…. probably because I’ve had long enough since I was last pregnant that pregnancy isn’t running through my mind as much now… and we’ve stopped trying so my focus isn’t on pregnancy. It’s been mostly on taking care of me, taking care of E, and getting rid of these stupid headaches.
On the headache topic – as long as I take my Plaquenil twice a day like I am supposed to (I’ve only missed one dose since the beginning of the month) they aren’t as likely to turn into migraines, but they are still bad headaches that are there almost constantly. With vicodin I can get the pain down to around a 3, and when they get really bad I also take an alleve (which overall I’m avoiding due to the digestive issues that run with me taking NSAIDs) which helps bring the pain down to about the same level. I’ve been getting breaks in the pain, not frequently and not for more than a couple of hours, but I have been having breaks from the headaches finally! These breaks started somewhere around a week ago and I’ve had 3 of them.
On the topic of E – His pain is extremely bad tonight. I took him his morphine almost two hours ago and he’s still in bed unable to get up due to the pain. An hour ago I took him a vicodin (his doctor has him on morphine consistently and vicodin for breakthrough pain) and he’s still really hurting. I wish I could take his pain away. I don’t care if I’d have to feel it myself if he just weren’t in so much pain. It’s so difficult watching him hurt, and understanding chronic pain, even if I don’t understand his exact form of pain, makes it even more difficult because I know that although it becomes less with the meds (usually) it doesn’t go away, and I know how difficult that is. He had wanted to be out of bed almost two hours ago, so I took his meds to him and started waking him up, and he has been unable to get the strength and lessened pain to be able to get out of bed. 😦 I would take his pain on myself if I could to make him feel better, and I know he feels the same about my pain. It’s just so hard to watch the one you love suffer. 😦
As I mentioned I’m in the middle of an unexpected period. My PCP and I have agreed that we think the Nuva Ring will be worth a try to see how I do… I just need to make it a couple more months until I can go back off the blood pressure medication for awhile (which isn’t making enough of a difference for me to want to continue, but I want to try it through the whole winter and see how it goes) and start trying again, if the rest of my health is in order. He (my PCP) tried to recommend an IUD for me to see if it would help with the endometriosis, but we both agreed that is definitely a long term investment, and I’m hoping that going back off hormones (or changing them) will bring my health back a bit better and I’m hoping to potentially start trying for a successful pregnancy again in a couple of months, so we’ll see what happens. Obviously though this birth control pill is not for me. And although we agree with my rheumatologist that the migraines are due to my lupus, we aren’t wanting to up the estrogen content on a pill any further. I know that I can’t do progesterone only birth control pills or shots, so the Nuva Ring is our next method to try. If these migraines and nasty headaches continue for more than another month or so (Dr. Rheumy is unconcerned unless they go more than a couple months) I will be going off the birth control and blood pressure medication… this is my own decision, which will be discussed with both doctors when the time comes… but I want to go back to the basics if they continue… and since both of these were started within a couple months before the serious headaches started I’m not convinced they should be continued if the headaches continue, I want to go back to where I was before all the changes and see if I can get my body a bit more under control. Those two things and cutting out beef (mostly, other than the rare meal with hamburger) have been the only real changes in my life other than a couple stressful situations which have been cleared back up. When I was just on Plaquenil I was not doing great, but I was definitely better than this. And since I can’t take the blood pressure medication without being on birth control (other methods don’t work for us for a variety of reasons) both are going to have to go. I will be sad to go back to having my fingers not work with the things they put on your fingers in doctor’s offices to check O2 levels (and pulse?)… but that is about the only thing that has noticeably improved while on the blood pressure medication (which was supposed to help my Raynaud’s a lot more than it has) so I’m ok giving that up to get back to feeling a bit better. Going off of those medications is not guaranteed to improve my health, but I want to at least give it a try.
I had other things I wanted to talk about but I can’t remember what so I guess this is the end for now lol! 🙂 I’ll do another entry at some point with an update on things.

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.

E had a doc appt Tuesday, he’s now on a different pain med which seems to be working better for him (he’s sleeping again, and not having to sleep as long to try to feel rested, the sleep is restful and he gets a good 8 hours almost every day so far… Thanksgiving being an exception due to timing of eating and all of that), he has a new bp med which we haven’t had money for yet, and he is to have an epi pen at all times (no money for that yet either). His cholesterol is high, so we are changing our diet some more, but there aren’t too many more changes we can make, it’s just a matter of them actually starting to make a difference… we made some huge changes to our diet about two months ago, though we’ve been eating pretty healthily over all since we got our own place about 15 months ago. When money gets tight we’ve had to go back to cheap food, but now that we have the food stamps things are a lot better. So we just need to make some adjustments and things will be good as far as diet. The other thing the doc said would generally be recommended is exercise, but with E’s hip, and the fact he walks at least 4 miles a night at work, the doc was more concerned with him not getting more walking in lol. E’s been having elbow issues lately (the past few months, but it’s gotten really bad the last three weeks or so), and the doc examined it while we were up there… he suspects some form of degenerative arthritis, though is unsure what kind, or why. There have never been injuries to that elbow, so they aren’t sure what is going on yet… we need to go get xrays done on it.
We both survived Thanksgiving… it went pretty well over all. 🙂 And E survived working Thurs night/Friday morning so that’s good too. We have a storm coming in so both of us are hurting, but we would have been anyway, me from just going out to spend an hour or so with E’s family and trying to keep myself functioning well enough for that time to be sociable, especially since it was more than just his immediate family there. It was E and I, E’s mom and step dad, his half sister, his step sister and his step sister’s boyfriend. Some friends of his sisters’ stopped by at one point too. I fixed the salad I made (not all of the ingredients had found their way to our house) and sat down in a chair, where I stayed for pretty much the whole hour we were there. I was up for maybe 1/4 of our time with his family, the rest was spent sitting down. But I did ok acting normal and came home, relaxed a bit, and E and I went to sleep. I’ve been sleeping 10+ hours almost every time I’ve gone to sleep since. I think I’ve had one nap for a couple of hours, but otherwise each time I close my eyes I am out for several hours. I’m on new pain meds, which I’m sure are lending themselves to the sleep situation as well.
I think that’s all the news here…
I’ll be talking to E at some point this weekend about the name thing I mentioned in my last post, I’ll try to remember to post about it afterwards, but my memory is affected lately (more than usual) so we’ll see… I’m just so tired all the time right now while trying to adjust to the meds. Which is both good and bad…. I’m getting lots of sleep, which I really need after all the sleep issues of the last few months, but I’m also having memory issues because of being so tired. And no, I’m not taking the full prescribed dose, my doctor and I both feel I should take the least amount possible and only increase to the full dose if I have to.
Oh, and I’m also at the point in my cycle where I’d normally be getting ready for a period, so we’ll see what happens when I try to push past it with this birth control…. I’m worried there isn’t enough estrogen, but we shall see…. that’s all playing a role in how tired (and emotional) I am right now too….

OH! I never shared my news. Last week (or the week before, I can’t remember now) I received a letter in the mail from our Walmart saying I needed to get my paperwork for my leave turned in or they were going to terminate my position. My doctor had taken over two months to even get the paperwork back to me, and I needed to find my paperwork, so I got this letter about a week after finally getting my paperwork from the doc. E and I talked about it and decided that since it’s been over a year since I went on leave, and almost a year since I was released by my doctors to return, as long as I was given a chair to sit in and a certain position (people greeter), and Walmart still hasn’t let me back, that it was just time to give up on it, especially since I have applied for SSI/SSDI now. So I’m finally free of all that drama!! 🙂

Grrr….. so I hate the thought of cutting people out of my life. I want to say that first and foremost. There are a lot of reasons I feel that way, including if I were to cut out everyone who ever irritates me I’d be pretty damn lonely and I know it. However, I also know I need to take care of me, and the stress some people bring just makes me worse. There are some people who either never seem to know the right thing to say or who just don’t even try. I realize I’m not going to have everyone’s support 100% of the time. I also realize that I need to try not to complain too much, I also realize people have other things going on in their lives. However, getting angry at me when I express that I’m hurting, or when I’m not cheery 100% of the time… that’s a bit ridiculous. I’ve been trying to stay positive, even while throwing up from the pain and getting very little relief from my pain pills… but I can’t control my attitude 100% of the time… and when I’m in pain and/or tired it’s even harder. And all of this pain also has the pain from the miscarriage tied up in it, because although the lupus pain may not be tied to the hormones, you can bet the endo pain (and the fact my endo is definitely worse) is directly related to my miscarriages. Lately I’ve done a pretty good job staying positive in spite of everything. And there are a lot of other things going on in our personal life that I can’t go into on here. So I’d say I’ve done an extremely good job with handling things… though I know a lot of it hasn’t shown on my blog, as it’s been spur of the moment comments and such on social media sites that I update a lot more often. I guess basically I’m tired of being torn down each time something happens and I stop being quite so happy. Over all I’m still managing to stay positive, if more whiny. There are just some people who rub me the wrong way, and who I rub the wrong way, which is a big part of the problem… we overreact to each other. And we either need to figure out how to stop overreacting or else I need to cut them out of my life. But that is such a hard thing for me, for multiple reasons, including that I don’t have any close friends (other than E) in this area, I cherish the friends I do have even if we don’t do the best job communicating all the time, and I’m really sentimental about the people in my life… I still miss friends I knew in Kindergarten and who I haven’t seen since elementary school. I also believe in second (and third, and so on) chances, though I know my ex husband would try to tell you differently. I hope people will change, and keep hoping. Or that they’ll start to understand, which I guess is what I was trying to say with the hoping people will change. Some of these people seem understanding, but then out of nowhere it’s like their whole attitude and all the compassion just go out the window. And the worst part about it is when they are people who have been there, but suddenly your (emotional/physical/mental) pain is less than theirs. Of course, I know I can act the same way sometimes (especially with the pain thing) so I try to give more chances because maybe it was just a bad day or whatever else. But it just reaches a point where it gets too exhausting, and where things are obviously just getting worse and worse. And at that point I still have to fight myself over whether or not to cut the people out, which seems ridiculous because obviously they are just making the situations, and my health, even worse. So I’m really struggling here about a couple different people as far as what I should even do. And I know no one can tell me what to do, but maybe some stories of how others have dealt with these (general) situations would help? I know two people I’ve talked to, who have been in my shoes, have told me to cut the people out of my life, and that it made their lives better when they did, even if it was painful for awhile. I just keep hoping these people will suddenly realize how they are acting though. 😦