I saw a new doctor (Rheumatologist, Internist, Nutritionist) on Wednesday. I’m not sure what I think. Johnny will be going with me to my next appt, and asking his own questions to settle his own mind, then we’ll decide.

I am really more comfortable with the conventional treatments than with what this guy offers, but if he can set mine and Johnny’s minds at ease, we’ll move forward with him.

I did my labs for him today (a blood test and urinalysis)… it took 3 pokes this time to get into a vein, and then the blood was moving so slowly that she had to take off the one vial and put on another, and got the amount between the two. It hurt pretty bad too… I’m expecting bruises on at least one any time, though since she couldn’t get into that vein, it may not bruise?

Idk… we shall see what we shall see.

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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.

Everything (that has been able to be run… still haven’t had a chance to run the DS-DNA, C3 Complement, or one other) is normal… Rheumy wants to see me in January. No idea what to do about weight or digestive issues at this point. No idea what’s causing them.
I don’t really want to talk about it… but I did want to update.

This morning was spent on E’s and my health. We both had appts at our PCPs office to get our labs run. E is having the normal works…. CBC, Complete Metabolic, urinalysis to check kidney function and make sure everything is normal there too. I think theres another test or two, but I can’t remember. On my end it was all but two of the tests that were ordered when i was at my rheumatologist’s office the last time (9/29), the remaining blood tests need to be drawn at the hospital, as they aren’t in the tests that the lab our clinic sends it’s tests to covers. And that sentence will probably need to be fixed later when I’m more awake. Basically the clinic that provides our primary care has a draw station attached, and can run certain tests as well. The rest get sent up to a lab in the state’s capitol city, as the clinic is a state run clinic, and that is where the state’s lab is. They do not provide all testing, and do not have the ability to do all testing, I’m not sure if the reason is financial or something else. So the tests that aren’t able to be done by that lab are tests that have to go on another lab order for me to take to either the hospital we live by or the hospital my rheumatologist ie abouts connected with (her office is in the hospital complex in the city she works out of). After I get these last two tests run I will call and set up my next rheumatology appt and will likely get the results of everything in three to four weeks, as she only works two days a week at that office, so she is usually pretty booked up, and that also gives the hospital time to get all the results to her. The clinic, which ships all of my labs to the opposite end of the state, gets my labs back faster than the hospital, and is more reliable about actually getting them to my rheumatologist. So a few days before I go see her again I will have to call and make sure they have received all of the results. If not I’ll have to call and bother the hospital until they send the results to the proper place.
While we were getting the other labs done they ran the pregnancy test that my PCP wanted done before I started the bcp. It was negative… no surprise there. So I started on my birth control, and back on my blood pressure medication (for my Raynaud’s) after we got home. And I’m warning everyone now, it will likely turn me into either a ball of tears or a raging bitch, and probably I’ll go between the two until I get through the adjustment period. If I can get my body to cooperate I will be using the pills continuously, so hopefully that means that I will settle into whatever normal will be for me on this pill rather quickly and stay there until I go back off of it! We’ll see… I’d like to skip periods as much as possible during that time, and it has the added affect of no changing hormone levels since I’m on a monophaisic… so unless I’m having periods every month my hormones will be staying the same (or close to it) constantly until my body decides it’s time to bleed or I go back off of the pill. And if that works, it’s good news my friends. In fact it’s excellent news!
Oh, and a report on the amount of pokes for my labwork… two! And not only that, my blood flowed well enough for them to get the full amount that is liked for the tests, rather than just the bare minimum, which is what usually is drawn if they can get my veins to give up any blood. So I’m keeping myself overhydrated again tonight, then going to the hospital tomorrow as long as I continue to feel alright, at which point those other two tests should be easy to draw for!
The trick seems to be drinking a lot more than necessary for staying hydrated, so my veins stay plump, followed by them applying heat to the area of my arm they want to draw from immediately before they insert the needle. Between those two things and the tourniquet my veins end up showing themselves!

I do not enjoy the drive to and from my rheumatologist’s office… it’s long, pretty, but very long and expensive, plus hard on our car. However, tomorrow is an appointment that due to lots of things has been put off a couple of times, I was supposed to see her in early July and that never happened, then in late July, which never happened, and finally tomorrow!
I need to see her about several things, including these headaches and my digestive issues. Also to see if we need to adjust meds, and what we are going to do about my weight. I’d rather not end up dropping more weight and ending up hospitalized… I’d like to stop all of this before it gets even worse. So hopefully she’ll have some ideas, or tell me it’s not lupus related and send me to my PCP… though I know the headaches are lupus related, I’m not sure that anything else is. Also she’ll get to see me either on my period (if it starts soon… day 24 right now… and although I’m in the middle of where it could start, I’m shocked it hasn’t started… my emotions took a definite turn today though, maybe we’ll actually see it soon) or right before it… which are two really bad times for me on so many levels. 😦
So wish me luck for tomorrow, hopefully I get some answers or get pointed in the direction of answers. I’m also hoping to get the disability paperwork printed up so we can get that ball rolling, but at the very least I want to talk to her about it, and I can send it up to her later… though I’d really rather have it in hand when we see her tomorrow.

I sent this out as an email to my family, and since I’m still not back to typing very well (will explain later) I decided to just copy and paste it.

Hi Everyone,
I had an appointment with the rheumatologist today, and wanted to let you know how it went.
She looked over all the blood work, talked to me about my symptoms, and told me I definitely have lupus, though she needs some more lab work, so off to the lab again. My heart rate was fast when she was listening to it, and though she forgot to mention it during the appointment, her assistant called me a few hours later and told me they want to set up an EKG. So this will be EKG number 3 in 2 months. I go for that on the 29th. I am on blood pressure medication for my raynaud’s phenomenon, as it will help to keep the blood vessels in my fingers and toes from spasming, and help keep me from losing circulation to them and having all the pain and difficulty with my fingers and toes. While I was there she looked at the vessels in a couple of my fingers and said that they look good, so that is excellent news. I also am on Plaquenil, which is a common medicine used to treat lupus, it is also an antimalarial. It is supposed to help with the joint pain and the rashes I get. Those seem to be the only issues my lupus is causing, so this is excellent news! The lab work will be the last of the tests (at this point, they will continue to check them) to give an idea of how well my kidneys are working at this point, it will be blood work to show which of my antibodies are so high so that she can get a clue as to what my lupus may be likely to do, and it will be blood work to show if I have the antibodies that point to blood clots forming to easily, which will show if I will be able to go back on birth control for my endometriosis and other reasons or not. I think that’s everything that we were told today. We go back at the end of next month (a week after E’s birthday) to find out the lab results and for her to monitor how I am doing with the treatments she has me on, which will also probably include tweaking them and possibly adding more in if necessary.
Merry Christmas!!!
J