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.

Kate at Busted Plumbing brought a new meme to my attention. This is the first week for the Saturday Snap Cup meme.
As The CEO puts it Saturday Snap-Cup is your chance to share a story of appreciation with your readers. Being positive one day a week instead of venting about how hard it is to sip coffee and gab with my girlfriends while our kids wreck whomevers house we are at be a mom is the least I can do! Share whatever you’d like–send a *SNAP* to your newest follower or favorite blogger, a *SNAP* to a stranger who gave you a compliment that made your day, a *SNAP* to a new lipgloss that makes you feel like a rock star, or even send a *SNAP* to your kids by sharing a picture of something they did that put a smile on your face!

This week I’d like to send a *SNAP* to my OB for including the kids in the appointment this week when we took them. They had a blast and are still talking about how great it was to get to help and to hear the heart beat. I love that rather than just letting them hear the heartbeat when she put the doppler up to my belly, they each got to do something with the appointment – Gamer with the doppler and Duckling with measuring me. She made all our days with that one move, and made the kids extremely glad they’d gone with us rather than them and Johnny staying at home so they didn’t have to do a long car ride. We didn’t even get complaints in the car, other than one question of how long it would take to get there, and we didn’t get any on the way home at all.

If you’d like to join us with this feel free to head over to

My OB thinks at least part of my pain, with where it’s been located, may be a cyst. If I remember when I have my ultrasound in a couple of weeks I’ll ask them to let me know if they see any cysts, or any signs that one has popped or anything.
The other thing is that we discussed how to keep me from having another pregnancy, because 1) we have three (human) kids so that’s enough for us (one with us year round, two with us every summer for now, though hopefully eventually we’ll be closer and have them more), and 2) another pregnancy, whether it lasted or not, would obviously not be a good idea for me, mentally, physically or emotionally. Since the hospital my OB works out of (the closest one other than the one in the town we live in – which has no OBs) is a Mercy hospital she can’t perform a tubal litigation there. However at her office she can do this procedure in her office 6 weeks postpartum, and 3 months after that it should be permanent. I can’t tell you how much that eases my mind. It’s not that I don’t want more kids, it’s that this pregnancy, it’s been enough for me without going through it again. And I wouldn’t want to go through even more miscarriages trying to get another pregnancy to stick again… I’m just not strong enough. Plus, as I said, three is a good number for us.
I think I’ve covered everything from yesterday now…..

So about two weeks ago my period started through my birth control, not surprising to me (other than not expecting it right then)…. birth control never works continuously for me for long it would seem. I called my general doc and explained what was going on with the migraines and the period and the birth control, and that I thought it would be good to change birth controls since I can’t really go off of them at this point with my other meds. He and I discussed for awhile and decided to try the Nuva Ring. I missed a call from him later that day as I was in bed, apparently he called to tell me he was not comfortable with prescribing a birth control of any sort with the migraines in the mix, especially since he doesn’t know that much about lupus or endometriosis. I again missed a call on Monday, so I just talked to them Wednesday when we were there (at the clinic) for E. There is an OB/Gyn he and E’s doc have been wanting me to see since the second miscarriage, but I put it off since we weren’t going to be trying for at least a few months, and there just wasn’t money at that point. This changes things. They really want me to go see that gyn. Part of my problem is that I can’t find a website, or any info beyond an address and phone number and patient reviews (no comments, just star ratings) for the guy. With my h ealth issues, and especially since this doc would be treating my endo, infertility and other issues of the gynecological variety, as well as having to coordinate with two other doctors, this doesn’t make me comfortable. When I was looking into possibly having surgery almost two years ago I researched doctors in the area, and found a ob/gyn group that has a couple doctors who specialize in laparoscopic surgeries, infertility/family planning/fertility issues, and high risk pregnancies. I feel this would be a better group for me to go to. I would like to follow my general doctor’s recommendations, but especially with his not knowing much about my illnesses, and how many docs I’ve gone through with the endo, I feel much more comfortable knowing ahead of time that the doctor is at least familiar with everything, if not dealing with it frequently (and since this office has two different doctors who specialize in minimally invasive and laparoscopic surgeries I’m going to guess they are the go to docs in the area, though obviously we want to meet them before I say “this is the doctor” for treating any of this). I’m not against meeting with the Gyn my doctor wants to send me to, but I want to see if there is a reason for that one in specific. If not, I want to go see one of the doctors at this other group.
I’m also hoping to go off a couple of my meds soon, as one isn’t doing much of anything and is a higher risk for pregnancy, and the other is birth control, which could be related to my migraines and I just prefer not to add that crap into my system any longer than I have to. But like I’ve said before, I want to be on birth control whenever I’m on that other med. For reasons I won’t go into (mostly on my end…) abstinence isn’t really much of an option for us. Well, at least not if I’m off the birth control pills LOL! And do to my “girly bits” issues (vulvodynia and/or vulvar vestibulitis as well as interstitial cystitis, and both of us being latex sensitive) most other forms of birth control are out. I’m just way too sensitive, and even E gets discomfort from most other types of birth control. I have to use special lubes for goodness sake…. so yah. Pretty much if I’m off birth control there isn’t much in the way of stopping a pregnancy (at least not short term or nonpermanent ones). That’s probably part of why my PCP wants me to go to an OB/GYN… because I’m pretty frakking complicated!!!!!!!
So this morning I called up to the clinic that handles our primary care and left a message for my PCP about possibly going to one of the OBs at that group instead of the one he and E’s doc recommended. I’m hoping to hear back tomorrow, since that’s when the nurse said she’d be able to get back to me… at the earliest. And I’m still waiting to hear back from my rheumatologist’s office on a couple of things… but I won’t likely hear back from them until next week now, because of the fact that my rheum only is there two days a week, and those days changed to Tuesday and Wednesday. GRR! So I ordered a new pack of birth control and pick it up later today as I’m on the last couple in my current pack. And hope that I can get at least partway through it by the time my doctor pulls me off the meds, though at least prescriptions are cheap with E’s insurance (the only thing that is).
And that’s my latest news, I am adding another doctor to my list. Hopefully the last one for now (and for at least a few years?)….

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.

So Friday our internet was cut off until Monday, which made it really rough for all the people who keep an eye on me online and were very worried that I wasn’t replying to them on any sites or answering any messages from them.

On top of that I was in ER early Monday morning. I had to call E home from work before his lunch to take me because I went from tingly lips to a numb tongue, which was quickly followed by numbness in my left hand and foot. We wanted to make sure it wasn’t a stroke or TIA. It wasn’t, and all the blood work she could get done quickly was fine, so we aren’t sure what happened. My rheumatologist isn’t worried about doing more testing at this point, though that may come up at my next appt … We’re probably going to have a big set of testing coming up for me.

The rest of Monday was spent with phone calls followed by sleep.

Tuesday was spent with more phone calls, as well as an appt to hopefully get some rent assistance and our electric bill paid, because otherwise who knows how we’re paying out bills. I’ve had more doctors appts and visits this month than I have since last year, and I have a bunch of testing to do again. We also dropped off the application for food stamps and state aid while waiting for disability, as there is some sort of program for the needy disabled in our state to help with financial things while waiting to get on disability (which reminds me, we are looking at moving to a state closer to the kids and my family next spring, I need to check into what is transferrable and what is also available in that state that we need to apply for when we are moving). The appt for that is next Wednesday.

Today (Wednesday) is being spent driving to and from our primary doctors’ office and E has an appt with his PCP. I will be getting my lab tests done while we are up there. I also have been having to fast for these tests…. so I’m hungry and tired and just not feeling well due to all of that. 😦 I need to get a shower sometime in the next hour or so because I’m feeling really gross and don’t want to go to the doc’s office, but I’m not sure how I’m getting the energy to do that and the stuff that needs to be done today, plus I’m likely to be the one driving (I generally drive to these appts) and I’m going to have to take care of the prescriptions afterwards.

So I was talking to Aunt D this evening and she mentioned that she had been to my blog this evening looking for an update, and there wasn’t one. *Hangs head in shame* Please forgive wonderful readers of mine. I was thinking this morning that I needed to do one, but for a lot of reasons, wasn’t sure about doing one at the time. I knew it needed to be done, actually one has needed to be done since Wednesday when I received information to use in this update, but I haven’t felt up to it, especially emotionally.

On Wednesday we had an appointment for E with his PCP. Actually I have quite the story to tell about this appointment. Each month at the end of his appointments we set up the appointment for the following month. Makes sense, right? Since federal law prohibits refills of the meds (other than tramadol) that he has been on, and since we are already there, we might as well make it. Especially since this doctor is only available a couple days each week, so his schedule fills fast, though he insists that he see E every 4 weeks so that he doesn’t run out of pain meds, and would have the schedule rearranged if necessary to do so. Well the regular receptionist at the clinic we are seen at had a baby in… late June I believe or it may have been mid July, I can’t remember now. Either way, although she is no longer on maternity leave, she isn’t in all the time… she generally leaves midway through the day for lunch and to take care of the baby. We had a lady we hadn’t seen before set up our appointment when we were there in August. And she set it up with us, then took care of payment and off we went. We didn’t receive a phone call Tuesday about E’s appointment, but thought maybe they were just really busy on Tuesday since it had been a holiday weekend. We arrived at the clinic Wednesday morning about 30 minutes before he was due to have his appointment, and he went and signed in. Our receptionist was there, and made sure she was remembering our last name correctly. After double checking she said “E, we don’t have you on the schedule.” Luckily I have a very smart husband and he had his appointment card with him. She told us they’d see us since she knows we drive between 30 and 60 minutes each way (dependent on traffic), and after seeing E’s appointment card she definitely wanted to make sure they saw us. We finally left the clinic over 2 hours after arriving. We had a short appointment with the doctor (not that they are ever very long anyway… unlike my appointments) and discussed how the meds were working. E had been on 30mg of morphine every 8 hours, and that worked the first two weeks he was on it, but the third week he had a substantial pain increase (as in, to the point he wasn’t at work for a few nights, with his nights off in the middle of them) so we weren’t sure what was going to be the next step. He was back to having his pain managed well enough the last week leading up to this appointment. The decision was made to try something else, none of us wanted the morphine dose upped any more than it already was, so the decision was to put E on the fentanyl patch. He’s now on day 2 of it, and didn’t have to even take tylenol tonight (the doc said that was the only acceptable pain med to take with those, as E is allergic to NSAIDs), so this may work, we shall see. If not we’re probably going with morphine every 8 hours and something for breakthrough pain, we will see. I’m grateful each month moves us closer to seeing the specialist, and I know E is as well. E’s PCP is as well, since he doesn’t like having to prescribe E the meds he is, but none of us know what else to do before we can get him in with an ortho surgeon.

While we were sitting around waiting I saw my PCP and asked to speak with him, on days that E’s PCP is there my PCP is in as a admin person rather than a healthcare provider, so I knew that unless he was in the middle of an office issue he’d be able to talk. He had a few free minutes, so we went to a hallway and spoke for a minute. I filled him in on my vomiting issue (mentioned in the post before this one) and the other things that I’ve noticed since I started doing a symptom diary, and we talked about it for a minute. He told me he wants me to see my rheumatologist and bring it up before he does anything with it, but that he has some ideas about what is possibly happening. I need to see my rheumy first to be sure it’s not lupus or med related. He also wants me to ask her if she wants to test for it, or if she wants him to take care of all the diagnostics. It is more up her normal things that she deals with, so we’re both hoping she’ll take point on this. If it’s not meds or lupus a big guess about what’s going on is Crohn’s. We shall see.

I have not managed to gain weight. Well that’s not entirely accurate… the scale indicated a bit of a weight increase for me, but since I was on my period it’s likely it was caused by some combination of bloat, inflammation and extra blood. I was either a pound or two heavier than when we were in there about a month ago. Hopefully I gain more weight before we go see my rheumy in a couple weeks, though at least at this weight I’m guaranteed she’s going to want testing done right away to find out why I can’t gain weight, and why I’ve dropped so much weight (I’ve dropped almost 25 lbs… and I’m skinny to begin with), if she doesn’t have the answer already.

On the stomach and digestive front. I have stopped vomiting, but I’ve also cut out having meat as often, or by itself. I now have it in sandwiches when I have it, generally with mayo and cheese. I have noticed a few more symptoms since I started charting things. For one, although I don’t have the diarrhea that Crohn’s can cause (does cause?) I have bowel movements within a few hours (at most) of eating any meat (and the last times I vomited I was having issues with both ends at the same time… I just hadn’t thought about it as significant at the time) and that’s a huge difference for me, as I am on two different meds (one constantly, one as needed) that plug me up quite a bit. Of course since nothing was making it’s way into my intestines and out that end until everything was coming up the other way as well I hadn’t thought about that fact when I first started having the issues. I’m running out of things to eat because since meat is lower on things to eat I’m having more of other foods, including dairy foods. I am severely lactose intolerant, though I have meds that help a great deal with it. Today my choices were dairy or meat as far as what sounded good, and I didn’t want to spend my time terribly ill again, so I went with dairy. I had enough dairy to almost counteract my meds, and ended up miserable anyway… though at least it was just stomach cramping.
I’m now looking at my list of symptoms I’ve been noticing that are GI related. Vomiting (thankfully that has stopped as I changed my diet), severe fatigue related to the vomiting, lack of digestion (when I was vomiting everything was coming back up looking almost identical to how it must have looked when I ate it, and I’m not sure how much things are being digested and absorbed even now), gurgling/nausea after foods containing even small amounts of meat, frequent bowel movements (and as I’m coming off the pain meds and am down to just one med consistently that can cause constipation they are softening some), and a lot of left side abdominal pain, which I’ve always put off as endo, but which I’ve dealt with for the last few years…. the rest of this has come on suddenly, the left side pain hasn’t… I don’t know if it was an early warning sign, endo, or something else. However, it’s certainly related to my meat eating, and to BMs. 😦

I know I had more to update on, but I can’t remember what and I’m pretty tired, so I will try to update again soon. I got the important things out with this post.

I hope everyone else is doing well!!
J

Well I go to the rhuematologist on the 23rd.  Hopefully it goes well.  Now, just to get the money to be able to go.  I’m uninsured, and need to pay for the visit up front.  Thankfully, I go to one of the clinics in the area for the rest of my health stuff, and am on a state program through them.  Although this doctor doesn’t take part in it, they do discount appt costs for people who are on it.  So my first appt fee was cut in half (and then she cut it a bit more for me since I’ve been out of work for the time I have), though I still have a $50 copay that can’t be cut…. so altogether… $150 just to get to see the doctor.  That’s without paying for prescriptions or doing follow ups for her.  At least it shouldn’t be so expensive after this visit.  And thankfully, gas prices are down, so it won’t cost as much to get there and back as it would have a few months ago.