I don’t know where to start to update, so I”m going to start with the latest that’s going on.

 

Still grieving Lily (as I’m sure I always will), but I’m feeling alive again.

 

I had another echocardiogram a couple months ago to check on my murmur. When I went to get my records for social security the hospital included the cardiology report. Someone I know, who is a nurse, read it and explained it…. NOT OFFICIALLY! The understanding of it is that I have two small murmurs, and I have some enlargement of my heart. Now, whether this is lupus or not, and what level of concern this is, I’ll find out on Sept. 11. 

I’m still on prednisone because I ccan’t go below 5mg without neurological symptoms starting up. I’m pushing for a neuro work up when I see my rheumy.

I’m having a ton of foot pain…. the doctor I saw at the walk-in clinic thinks it is from my lupus, attacking the stationary joints in my foot. Xrays have been taken and I’ll find out more on the 11th. 

 

Lupus just seems to be out to get me, even when I’m on 3 meds strictly for putting it into remission 😦

 

The kids are great. Gamer started HS this year, and Duckling is in her last year of elementary school.

A woman is like a tea bag – you can’t tell how strong she is until you put her in hot water. – Eleanor Roosevelt

I like this quote, which one of my aunt’s posted as a facebook status last night, and which inspired me to write this. I know a lot of really strong women, and they’ve gone through a lot of really hot water that has made them show that strength. A lot of my friends say I’m a strong woman too… and although my feeling is that I”m just playing with the hand I was dealt and living the best I can, I suppose if I were watching someone else walk my life I’d call them strong, so looking at it that way I guess I can agree that I’m strong.

A few weeks ago (I think that’s the timeline) a friend and I were discussing one of the photos I still have from my wedding with my ex husband.

The above photo is the one being discussed. It’s a (now deceased) family friend and I, who I used to be a parttime caregiver for. I would go to his house between college classes a couple days a week and make sure he had enough water, if he needed food I’d prepare it for him and give it to him, we’d sit and watch tv together, etc. The friend I was discussing it with commented that I looked really happy and healthy in the photo. I then mentioned that none of my diagnoses were made (other than the allergies I had at the time) until after that period in time. At that point she said something about how hard it must be to deal with all of it coming on so quickly… which led to me making the list of all of the diagnoses in the past 5 years that I’m about to share.

I was diagnosed with endo Nov. 2005, Fibro and my vulvar and vaginal issues in Dec. 2006, the bladder condition (IC/Interstitial Cystitis) in Jan. 2007, I was told I’d end up with lupus (due to already having signs, just not enough of the diagnostic criteria was met yet) in March or April 2007, and diagnosed with lupus tentatively in Nov. 2008, and positively in Dec. 2008.

That seems like a lot of hot water. I’d also like to say that I have had allergies since I was a child, I had asthma as a teen (which is now in remission and has been for the past 7 years almost, but is still certainly there under the surface) and I have dealt with becoming ill more easily than most for a long time (stupid autoimmune issues). Also – 4 miscarriages in 2ish years. That’s just the health and health related stuff too, it doesn’t include the stuff that has happened in my personal life (some messes I got myself into as a teen, some messes with my parents, sexual harassment (or was it abuse or somewhere in between? I don’t know how to define it, although marital rape is a good word for at least some of it) and verbal abuse from my ex, leaving my ex, and so on)…. but each thing has made me stronger. That’s part of why I say I wouldn’t change any of it. Oh there has been a lot of stuff I’d never want to go through again… but it’s made me.. well.. me. And it’s made me strong. The fact it’s made me strong and I know I can survive, and have more of a fighting spirit towards adversity than I ever expected is part of why I’m …. why I wouldn’t change it. I can’t say I’m glad to have gone through all of it, but I’m glad for how it has shaped me. That water has been very hot, but it’s also made me a stronger person, and in some ways (though I realize I can be very bitter) it’s made me a sweeter person as well, in that I am more compassionate towards others than I think I ever could have been without going through this stuff.

It has been since the 12th that I last wrote in my food/migraine diary about having a migraine. That’s the day I took the Excedrin Migraine and stopped it in it’s tracks. I had starting signs for one on the 17th, but after more rest it went back away. Today I have one again. I got really nauseated last night (couldn’t even finish my sandwich) and took an anti-nausea pill, slept from a bit after 3am until sometime around 7:30 am, at which point I woke up starving, had some breakfast, went back to sleep until 10:45 am or so when our neighbor who loves playing music (with LOADS of bass) very loudly woke me up, at which point I realized I had a migraine going. Two hours later the pain is manageable and more like a normal headache (though I’m sure if I don’t keep pain meds in me it’ll be a migraine again), with the help of most of a can of coca cola (yay caffeine…. ugh) and one half of one of my prescription pain pills. I have been keeping a food diary since the 12th, and also keeping track of pain levels, and any treatments I do for headaches, keeping track of meds I’m taking and when, and anything else that seems to contribute to my migraines (such as using the phone when it’s got white noise on the line, like I had to this morning when I called the landlady about our neighbor, and like last night when I had a quick phone call to make)… I notice if there isn’t static or other noise on t he line I can talk without it giving me too much of a headache, but if there is any noise on the line besides the person I’m talking to I’m prone to start having headaches. I have 3 foods I currently suspect for linking to this migraine. First is hotdogs, primarily because my pain shot back up not long after I finished having left over mac & cheese with hot dogs in it awhile ago, and we had that for dinner last night too, nausea started a couple of hours later. I had been craving corndogs about a week and a half ago…. and looking back at my diary/journal I had pretty much constant headaches (though not generally migraines) while eating those frequently. So that helps with my suspicion. The hotdogs are also a different (and cheaper) brand than the corndogs we buy (we’re corndog snobs … at least as far as what you can buy at walmart lol… they need to be one of two brands, the names of which I can’t think of… but they are the more expensive ones as the cheapies are gross…. hotdogs we’ll go cheap with though)… so that could be the cause of why hotdogs give me migraines, whereas corndogs just give me nasty (constant) headaches. My next suspect is Beef… which I’ve been trying not to eat as much of anyway. I have been having hamburgers again lately, so it’s been in my system more again. The third (and most sad) is chocolate. I still haven’t worked out what the link is there. I do know that I had been doing fine with small amounts of chocolate, but yesterday I had a bit bigger piece, and a different kind than I’d been having, and I”m having a migraine again. I think though, that it’s a coincidence with the chocolate and my headaches since I don’t always get a headache, let alone a migraine after eating it… but if I’m going into a migraine I crave it (and do pretty well not having it at that point, yesterday I wasn’t craving it, I just decided to try a piece again after not having any for a few days)… so we shall see… I’m continuing this food journal thing. Another thing to note is that this is the first migraine I’ve had since I started bleeding with the miscarriage…. I don’t know if that is linked or not… I know hormones were definitely causing some of the issues, so it could be. :/

As if enough weren’t happening in my body with the miscarriage, I just woke up from 4 hours of sleep a bit ago, and am having migraine symptoms….. I may be around even less the next couple days if I’m right about the migraine coming on. I’m off to go get some caffeine and hopefully break the cycle before it gets bad…

Ok… sometimes the treatment is almost as bad as the problem.

I’m back at my computer, and a few days earlier than I expected to be able to be.

I’ve been in a migraine cycle again. I slept a lot for a couple days, and yesterday the pain hit… I’ve got to say it ranks in my top three worst migraines ever. I spread out on the couch for quite a bit of my awake time yesterday (which wasn’t as long as normal), then went to bed. I tried to sleep but couldn’t, there was just way too much pain. I drank half of a can of coke (or so, it might have been closer to 3/4), then left the rest for Johnny. I then took some meds to calm my stomach, and went to sleep. It was a disturbed sleep due to the caffeine (part of the reason for the stomach meds was to knock me out, part was to stop the near vomiting I was dealing with) but I slept until around 2:30 (am), got up for around an hour, ate, took pain meds, talked to a friend for a bit, found out about a home remedy she uses (a hot green tea soaked washcloth across the forehead), got that prepared, and went to bed. When Johnny woke me up after he got home he had Excedrin Migraine for me (I’d asked for it). He made food and I took it and knew the risks. I don’t do well with caffeine. I’d slept about 12 hours by this time (in the 15 hours or so leading up to this point) and wanted some more, but knew I was unlikely to get any. When Johnny went to bed I went too, and tried to sleep, but ended up just getting back out of bed feeling like something was trying to crawl out of my body. I don’t even know how to describe how I feel when I have a lot of caffeine in my system. It’s like there is another being inside trying to move around, and then there is me, who just wants to lay still. And the stomach issues that happen to both ends with that sort of thing. My head pain is gone, but between the jitters, the hyperness, the weirdness and the tummy upsetness I think I’ll be sticking with dealing with the migraines the way I have been rather than taking this med, unless it reaches the point where I’m considering ER. Especially since it gives all those side effects and only gets rid of the pain (which admittedly helps me function better) but leaves all the other migraine symptoms. Such as… cognitive issues… it’s taken me over 4 (possibly over 5) hours now to write this.
Some samples of my facebook statuses over the course of the last few hours:
“On the couch and JIIIITTTTTTTTTTTERRRY!”
“Jenny feels like Tigger *bounce* *bounce* *bounce* …. Ummm yah… caffeine affects more than just my tummy. I’m still really lethargic and tired, but my body wants to MOOOOOOOOOOVE! LOL!
5 hours ago Custom: loading…”
“Jenny is pleased that the Excedrin has taken away the head pain.. not so pleased about the other pains and upsetnesses it’s causing, though with that much caffeine she knew to expect the issues…. and not pleased that the rest of her migraine symptoms are still around …. *bounce* *bounce* *bounce*… oh yah… and she’s hyper!”

A general headache/migraine update. Since going off of the hormones/birth control and the med I was on for my Raynaud’s (the med that made it so I needed to go onto the birth control) my headaches and migraines have been less frequent. However, they have also been more severe when they happen. I now spend one to two days sleeping in the process of prepping for the migraine, two to three days with intense pain, and one to two days sleeping a lot in the process of recovering from the migraine, so I’m almost constantly in one phase or another of migraines, it’s just not always the pain. Obviously the hormones were part of the issue if I’m not in constant pain anymore, but the lupus does seem to be part of the problem. Also I noticed the other night when I had a bad headache start (I managed to keep it at just a bad pain level rather than a full on migraine) that it started not long after a mug of hot cocoa, and that the migraine that started yesterday (and got severe fast) was after a few squares of a Madagascar chocolate bar, and a couple (smaller) squares of a mint chocolate bar from another brand. Both have decent percentages of real cocoa in them too. So I’m beginning to think chocolate, even if not the only cause, contributes to my migraines. I’m keeping a food diary now, and tracking my pain levels throughout the day as well.

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. 🙂

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?)….