February 2010


This blog is going to be moving soon. I’ve debated for awhile about whether I wanted to announce this, or just email my regular commenters… but decided that the good of announcing it outweighed the annoyance of one or two people I didn’t want to have find me follow me over. The blog is not completely set up at it’s new home yet, I”ll give the link in a post when it is… but I did want to give the head’s up, and explain why I haven’t done any new posts in awhile… for once it’s not due to my health!

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?)….

So I take part in a few different online support groups… my primary ones being weareendo.org and wearelupus.org … I’m working on becoming more active on them again, I had been, but between being busy with the kids during the summer and the miscarriages and how my mental stuff was post miscarriages I closed in on myself. So I’m taking part more again. I also have an email group I’m in (a yahoo group, I get it delivered to me) and know of some forums. My friend Jen is currently looking for some online support groups for fibro and I sent her to wearefibro and to the forums from But You Don’t Look Sick and Chronic Babe but I wanted to get other suggestions for her as well. She is in the process of being diagnosed with fibro, and having a full rheum panel run (she’s on the way to the rheum soon hopefully) and she could really use support. So we’d both appreciate suggestions (you can comment on both of our blogs, I’d love to hear the suggestions, and I know she’s appreciate having them given directly to her as well) on that end. And since the topic came up I thought I’d ask my readers what your favorite support groups are, for any illness you may deal with. It doesn’t have to be fibro, or anything I deal with, I’m just curious what good support groups are out there for different illnesses! So if you want to talk about support groups please leave me a comment with any of them! 🙂

I’ve heard these statements a couple of times lately. And I was so confused how that could be, considering I’ve had mind scrambling headaches for all of 2010 (or close enough, the first couple of days I may or may not have had them, I can’t remember now), it’s not been an easy year. After hearing the second time a week or so ago I started wondering what it was that was so different about how I looked, and what had changed that I was looking better. The friend who said these things the most recently also said “You were looking so pale, but you’ve got color in your face again!” and I wasn’t sure why that would be. After wondering for awhile I realized there are three things that likely (physically) contributed to the change. 1) I have not been running as many errands or going out as often. I’ve been out only 5 or 6 times that I can think of in the past month and a half. Maybe a couple times more, but definitely a lot less than I used to be. I used to run errands up to 3 times a week (usually no more than 2, but sometimes another errand would come up) so this is a significant change. I have been out for 3 doctors appointments, and have run errands just a few other times (thankfully in town, the trips out of town to the doctors have really been taking a lot out of me this year), so I haven’t been exhausting myself as much by going out. These headaches have kept me pretty close to home. 2) I’m on better pain meds. This actually started in December, just before Christmas, when I requested stronger pain meds because the low pressure systems coming through our area were causing so many pain issues for me. I have more energy, and (when not fighting an actual migraine or dealing with my cyst) I am able to be more active around the house, though I still stick to lower energy activities so as to not send myself into a flare. 3) Since I’m having all these headaches and am stuck in bed more often than I used to be, I’m getting more sleep, and even when I’m not sleeping, I am at least laying there resting. The cyst has complicated this as I’ve not been able to get very good sleep since yesterday morning, but I am still resting more than I was.
On top of that, although hearing “Get used to the pain and fatigue there is currently no treatment to help you get those more under control” was difficult… it had me down for a couple of days, but then I realized that it meant I had a more realistic view of how these diseases would affect my life, and I’ve been able to deal with that rather than continuing to have extremely high hopes of a sudden and drastic improvement. This is not to say I’ve given up hope or stopped fighting, but it does mean I have been able to deal better emotionally.
Also I realize certain vitamins and other things will help with my energy and pain levels, some of them I’m already on, others I can’t afford right now but plan to go back onto (magnesium I’m looking at you for one) when we have a bit more income again. Please don’t give me suggestions of treatments that “have helped so and so and it’s been miraculous” I’ve heard about a lot of things that way and quite honestly it gets old! On top of that I have a treatment plan laid out with my doctor, and am on medications (and other supplements) that could cause bad reactions when mixed with your suggestions! Both E and I (and my doctor as well) have researched the different treatments and things I take and discussed them, I don’t just willy nilly say “Hey, We’re adding this in now” or try something that someone recommends. And on that note, I turn to my friend Perpetual Spiral who wrote a post on this topic last year. She wrote it incredibly well, and has all the words I want to say on the topic of med/treatment/health suggestions in there.

I took some pictures of myself (face shots) the other night with the use of my webcam, and I have to agree that between my new hair cut and the things I listed above I do look better. For those seeing this linked on various social network sites that have pictures of me, I will be posting the new pictures soon, and you can compare to how I was looking before now. For those seeing this only through my blog, I will try to post pictures later today that show me both in the months leading up to now, and the pictures I took the other night… that post will be password protected (as usual with any identifying photo posts) so sorry for those who don’t have the password and who I don’t know… if you are interested in the password (or if you’ve lost it) let me know and I’ll try to get it off to you. 🙂

I’ve heard these statements a couple of times lately. And I was so confused how that could be, considering I’ve had mind scrambling headaches for all of 2010 (or close enough, the first couple of days I may or may not have had them, I can’t remember now), it’s not been an easy year. After hearing the second time a week or so ago I started wondering what it was that was so different about how I looked, and what had changed that I was looking better. The friend who said these things the most recently also said “You were looking so pale, but you’ve got color in your face again!” and I wasn’t sure why that would be. After wondering for awhile I realized there are three things that likely (physically) contributed to the change. 1) I have not been running as many errands or going out as often. I’ve been out only 5 or 6 times that I can think of in the past month and a half. Maybe a couple times more, but definitely a lot less than I used to be. I used to run errands up to 3 times a week (usually no more than 2, but sometimes another errand would come up) so this is a significant change. I have been out for 3 doctors appointments, and have run errands just a few other times (thankfully in town, the trips out of town to the doctors have really been taking a lot out of me this year), so I haven’t been exhausting myself as much by going out. These headaches have kept me pretty close to home. 2) I’m on better pain meds. This actually started in December, just before Christmas, when I requested stronger pain meds because the low pressure systems coming through our area were causing so many pain issues for me. I have more energy, and (when not fighting an actual migraine or dealing with my cyst) I am able to be more active around the house, though I still stick to lower energy activities so as to not send myself into a flare. 3) Since I’m having all these headaches and am stuck in bed more often than I used to be, I’m getting more sleep, and even when I’m not sleeping, I am at least laying there resting. The cyst has complicated this as I’ve not been able to get very good sleep since yesterday morning, but I am still resting more than I was.
On top of that, although hearing “Get used to the pain and fatigue there is currently no treatment to help you get those more under control” was difficult… it had me down for a couple of days, but then I realized that it meant I had a more realistic view of how these diseases would affect my life, and I’ve been able to deal with that rather than continuing to have extremely high hopes of a sudden and drastic improvement. This is not to say I’ve given up hope or stopped fighting, but it does mean I have been able to deal better emotionally.
Also I realize certain vitamins and other things will help with my energy and pain levels, some of them I’m already on, others I can’t afford right now but plan to go back onto (magnesium I’m looking at you for one) when we have a bit more income again. Please don’t give me suggestions of treatments that “have helped so and so and it’s been miraculous” I’ve heard about a lot of things that way and quite honestly it gets old! On top of that I have a treatment plan laid out with my doctor, and am on medications (and other supplements) that could cause bad reactions when mixed with your suggestions! Both E and I (and my doctor as well) have researched the different treatments and things I take and discussed them, I don’t just willy nilly say “Hey, We’re adding this in now” or try something that someone recommends. And on that note, I turn to my friend Perpetual Spiral who wrote a post on this topic last year. She wrote it incredibly well, and has all the words I want to say on the topic of med/treatment/health suggestions in there.

I took some pictures of myself (face shots) the other night with the use of my webcam, and I have to agree that between my new hair cut and the things I listed above I do look better. For those seeing this linked on various social network sites that have pictures of me, I will be posting the new pictures soon, and you can compare to how I was looking before now. For those seeing this only through my blog, I will try to post pictures later today that show me both in the months leading up to now, and the pictures I took the other night… that post will be password protected (as usual with any identifying photo posts) so sorry for those who don’t have the password and who I don’t know… if you are interested in the password (or if you’ve lost it) let me know and I’ll try to get it off to you. 🙂

I can’t take part in this because I am on narcotic pain pills… but after seeing it I wanted to draw attention to it for those of you who aren’t!!! (Plus with me it seems to fit more with Vulvar Vestibulitis, though I’ve heard some places that they are almost interchangeable)

Here’s a blog post that talks about a clinical trial for IC patients with generalized Vulvodynia, and here’s a link to the trial .. Please, if you can take part do so… more needs to be learned about both of these conditions, and the link between them, if there is one (which would certainly make sense to me)!!

And no energy to put it all together in a way that would make sense… so I’ll sum it up.
Headaches still aren’t gone (started somewhere between Jan 1 and Jan 4… pretty sure it was the 2nd) and they ended up worse again in the middle of the week last week (It’s Sunday today right? That would make it last week? It was the 3rd of Feb or the Wednesday right around then that they got worse again).
Had a period only 24 days after the last one.. .so a 23 day cycle, while on birth control. Getting ready to ask doc to take me off the med that is making me stay on the birth control as it’s not making much difference and I’m really tired of pumping that crap in my system.
After no cysts (that E or I can think of) since right before the first miscarriage (so last June) I seem to have one again. I should say no definite cysts, at one point in the fall I thought I had one again but I never had the pain from it popping, so not sure. Definitely having all the normal symptoms this time, we’ll see if it pops or if it resolves some other way? But sudden horrible pelvic pain (post period, at a point in my cycle where I should be in THIS much pain), a weird cycle leading up to this, lots of swelling on the left side of my abdomen, pain that centers on the left ovary when the rest of the pain is more under control, and ovary tenderness in the last few days (which I was chalking up to heading to ovulation, since I do still ovulate on birth control, it just keeps my lining thin enough to not implant)….
In other news I have two blog posts I want to point my readers to. I had another one but I can’t seem to find it or remember what it was.
First off I want to point all Interstitial Cystitis patients to Jeanne’s blog post about educating Congress about IC … she received an email about it from the ICA and they want patients to email them their IC stories. (Sorry for scrunching this in here Jeanne, I just know you word it all better than I could and I want to make sure the info reaches more IC patients…)
Secondly Kate at Busted Plumbing is doing a giveaway at her blog which I recommend for all people with fertility issues or infertility! I had a great post planned out just for this, but I have not been feeling up to doing anything with it, though I do want to spread the word (Sorry for bunching your contest in with everything else Kate) so… Please go see what it’s all about and take part if you are interested.
I think that is all I wanted to post about over the last couple of days (including this morning since a couple of these things just came to my attention) … sorry that it’s a shorter post and for not giving more info about the links… I’m just really unsure how to explain all of it right now.

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.