My Autoimmune Life

So today was a busy day for appts, my inhome nurse came by today (we mainly talk about symptoms and how I’m feeling, do basic monitoring of my health as far as how I’m feeling, and discuss pregnancy and babies, birth and that sort of thing)… I was NOT feeling well. It was a very miserable morning, and I’ve been feeling bad the last few days. We had a good chat, as always (I love this woman, she is fantastic… all four of us – five if you count baby, since she is a regular part of Littlest’s life too – love her), and I woke the kids up so they could see her for a few minutes before she went to her next client. She was concerned enough about how I was feeling, and about my weight, that when she went back to the office (She works out of the health department, which shares offices with WIC) she went and saw my WIC lady and talked to her between appointments and let her know I was having a rough day, and asked for an update when we got my weight. After seeing her and getting the kids breakfast I went back to bed for a couple hours before getting up for lunch and doing things with the kids (it’s been a challenging day with them as well), then went to WIC.
So the great news is that after actually losing weight before my last WIC appt and being put on Ensure 3 weeks ago (I saw my OB the week after the appt at WIC where I was last weighed, and my OB signed the rx form so I could get Ensure with WIC) I have GAINED WEIGHT! I was down to 93 lbs a month ago, and like I said, 3 weeks ago I was put onto Ensure – two bottles per day. Now I am up to 99 1/2 lbs!!! That’s right… in 3 weeks I’ve gained (Drumroll please!) SIX AND A HALF POUNDS!!!!!!! I can’t tell you how happy I was to see/hear this when we weighed me! I was nearly in tears. This is some awesome news that was desperately needed at this point, I’ve been having a hard time with a lot of things, some health related and some not so health related. I’m going to be going to therapy starting in a couple of weeks for that, but in the mean time I needed something to lift my spirits! And of course I had to come do a blog post about it so everyone could share in this wonderful news!

I got my latest lab results back yesterday, according to the latest tests my kidneys are in normal range for the levels that were tested (creatine and protein) and my OB isn’t worried. The nurse told me to call my rheumy and get in with her (which, from what I understand, she’s on vacation) or with her on call doctor if she has one (nurse insists she must, but I’m betting if she does the on call is in another city). I’ve been in a kidney flare since Tuesday, though at times it lets up, it’s really bad today. I’m just sick today with headaches, nausea, kidney pain and all around lupus stuff. And I”m tired… I’m tired physically and I’m tired mentally.
I’m also sick and tired of having to be detective for what’s wrong with my body…. I’m NOT the medical professional, yet when they aren’t listening, or when there isn’t something glaringly wrong (though, if I have days where I can’t get out of pain due to bed I’d say there is something glaringly wrong) they don’t look into it as much as they should. I’m sick of Johnny and I having to be the ones coming up with what could be wrong, then pushing my doctors into doing tests to find out if we’re right or not. I’m sick of us having to be detectives. And I’m sick of my body and mind, at 25, failing me. There are days where I’m great, I can communicate, I can walk and move and get out of bed and run and do all sorts of things. Most days aren’t like that though. Most days it takes me awhile to find the words I’m looking for, and by the time I find the word I forget what I was talking about…. OR… I start rambling on defining the words I’m trying to use so that people can figure out what they mean. That’s one of the things that bothers me most when I start getting down from all of this… the mental affects. It’s also why most days I won’t use our phone (if it’s even working) to talk to people, and why most people can’t reach me on instant messengers either…. communication is too difficult, and either I can’t say what I want to say, or I end up with craziness coming out of my brain and going straight to my mouth or fingers before I’ve really thought about it and been able to realize that’s not what I mean or it’s now hot I should say it. Today though, as much as that’s all bothering me, what’s really bugging me is that at 25 years old my body can’t do it’s job right. I’ve got multiple diseases where my body is attacking itself, and/or not attacking what it should be. My endo seems to be a case of both (rogue tissue goes and grows where it shouldn’t – attacking itself, and my immune system says “oh, that’s part of my body, I don’t need to attack it” and doesn’t do anything to stop it – simplified version of one of the theories going around right now), my lupus is my immune system attacking other parts of my body and being over active, and I have other health issues that are more of the same (though they don’t attack me as badly)…. the other stuff is minor compared with those two generally. I’m just so sick of all this crap going on.

I’m going to share a link to a blog post that really touched me today (thanks go to Sonja for sharing it with me)….This post ( When I’m understood I’m healed needs to be read by everyone, it is incredible.

Lupus is kicking my rear end… it’s affecting all my joints, plus having some fatigue issues. My main issue right now is with my wrists and hands.
Saw the perinatologist today – thinks look great, we also had an ultrasound! The heartbeat is great, we got to see baby from lots of angles, and I have a story from this that I’ll get to at the end of this post.
I should be going off the prometrium next week when I see my OB, it’s usually only used in the first trimester, so the peri suggested talking to the OB about it.
I should also be stopping the heparin next week (YAY!!! No more home shots for awhile unless we start my B12 back up), since I don’t have a personal history of clots, I haven’t had any clots come out when I’ve bled, and I’ve not had any other issues that indicate we should continue it, since we’re now at the point where miscarriage is extremely unlikely!
I need to have my OB order a 24hour urine collection for me (peri is in another state, and not a primary doc for me, he’s just giving input on my case to my OB) to see if there is any sign of problems with my kidney function, since I’m still having pain. He is also concerned (obviously, from the start of this section) that it’s my lupus… that was the only suspicion he had.
On to my story! When we first started the ultrasound Littlest was moving all over, showing us hands and feet (if you have the password you’ll see the pictures in the next post, if you don’t have it send me an email… it’s in my contact info on one of my pages). A few minutes into it Littlest fell asleep, so the sonographer started poking at him (Most of the time for whatever reason male pronouns come out when referring to the baby, though once in awhile female ones come out instead), he woke up, stretched his arms, went back to sleep. She tried again and got a couple movements before sleep happened again. This kept happening, then she switched to 3D for a couple of minutes and got a dirty look shot at her before sleeping again (she was pressing harder at that point)…. For those who don’t know… that’s totally how I am. If I’m tired I go to sleep no matter what anyone wants, and if you try to get me to wake up you’ll either get grumped at or you’ll get me rolling over and going back to sleep lol! It was so cute and funny to see my personality already coming through some lol! I turned to Johnny and said something about how “Not that there’s any doubt, but this is totally my kid!” lol!

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.

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.

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.

So I haven’t posted any “real” posts in awhile, as in they’ve been fun posts mainly, when I have posted anything. I’ve also been quiet online, I’ve played around on facebook, and chatted on and off with a couple of close friends, but more or less I’ve been quiet and not around a whole lot. Part of this is because a friend bought a collection of the entire Harry Potter series for me, and I’ve been reading them. The other reason isn’t as fun and is more serious. I’ve been having migraines. A bit before Christmas I cut my dose of my main lupus medication down so I was taking one pill a day rather than two. This has been discussed with my rheumatologist, and I do it when I don’t have enough pills to make it through to when we can afford my next prescription or when I have gone several days with little to no appetite and need to start eating more again. This time it was because my prescription at the pharmacy was going to expire while she was out of the office and before my insurance would cover another refill (yes, I finally have insurance!), and because the pharmacy won’t take another prescription for the same medication until after the previous one has expired. So I was going to be unable to fill my prescription at the time I was going to need the refill. The big issue is that when I cut my dose down I’m prone to headaches and migraines. I had been doing okay with my dose cut down (minor headaches, but nothing bad) so I kept it down like that hoping to keep eating and gaining weight back. Right after the first of the year I suddenly got hit with migraines, after having just minor headaches for over a week (I normally have migraines within a day or two of cutting my dose down), and I started back on my full dose of my lupus med. My migraines stayed for 3 or 4 days, then went back down to really bad headaches that weren’t quite migraines. Normally going back on my full dose gets rid of headaches entirely within 3 or 4 days. This time, I have continued to have head pain for pretty much the entire time since t he first migraine struck. I’ve had a few hours of no head pain, but otherwise I’ve got a constant headache, ranging from there just a little bit to full blown migraines. Even vicodin isn’t ridding me of the pain entirely. I’ve started back on alleve (I’d stopped taking it due to my digestive issues, and found it was part of the cause, though not the entire reason for all the issues) and take one every 12 hours or so. Even with both of those pain meds the headaches are there consistently, they just vary in severity. On Tuesday I noticed my left eye was red (again)… just about the entire white of my eye was blood red. This was not the first time I’d noticed this since the headaches started, but I hadn’t put them together until Tuesday. It took two days for my eye to go back to normal, and it is normal still today, it cleared up yesterday. Hopefully it will stay clear until I see my doctor next Tuesday, though I’m not sure it will. Sometimes it’s one eye (the left one this time) sometimes it’s the other, and sometimes both do it. I’ve noticed this over the past 15 months or so, but it’s usually a very rare occurrence, not one that happens 3 or 4 times in a 3 week period. I called my rheumatologist’s office on Tuesday and left a message about the headaches (before I noticed the eye thing), and didn’t get a response, then I called again Wednesday and mentioned the eye thing and they called back and told me they were calling in a prescription for pain meds for me, and that there was no big emergency, they could wait to see me until my appointment next Tuesday morning, but I CANNOT miss that appt, they have to see me. I’m glad, because I am not sure how much longer I can live with these headaches. They’ve had me in tears multiple times (which is how you can tell the pain is really bad, since not even having cysts burst puts me in tears anymore, and that’s some pretty major pain) and I actually was crying to E at one point that I wasn’t sure how much longer I could live with them. I’ve also had a couple of nights this week where I’ve been on the couch and all I can do is lay there and moan and cry and whine. I’m begging anyone who can possibly hear me (usually just M) to somehow put an end to this pain, because it literally feels like my head is exploding and imploding at the same time and my head is being torn apart. Even with vicodin and alleve. I’m taking vicodin often enough that I’m constantly woozy from it, and sleeping a lot. I take 1/2 pill every 3 to 4 hours… that’s a lot for me since normally I take 1/2 pill every 6 at my most frequent dosing… but the headaches start getting worse at that 3 hour mark. (Yes, I am still within the doctor’s prescribed dose taking them how I am.) I really hope she has some answers for me on Tuesday, because this is really wearing on me, and I’m not sure how much longer I can go.

Here’s a picture of my eye when I realized how it looked on Tuesday:

You can click on the picture to view it larger… the medium size doesn’t show just how red my eye was very well. I highly recommend doing so.

For those who don’t know me well, or aren’t in my life anywhere but this blog… I LOVE food. I have trouble gaining weight, so this isn’t usually a problem. I don’t overeat (usually) but it is one of my joys in life, and although I’m not huge on cooking, I do like to try different things.. I’m (generally) not a picky eater. Or… I wasn’t a picky eater until I had to become one. I have multiple issues that *should* change the way I eat, but they never have. For example, I’m severely lactose intolerant… like to the point that the lactaid pills you take each time you have dairy don’t help unless I take at least double the dose they say to. I no longer take those. I now take probiotics that are formulated specifically for lactose intolerance. And I have to take two of those every day to be able to eat dairy, even though most people can cut it down to one a day after the first few daily doses. If I miss days and have to start all over taking them I have some issues the first day or two when I have dairy again (though not as severe as without them). Also I have other health issues that have diets to follow to help reduce some of the pain. I do stick with certain parts of them, such as I don’t generally eat citrusy or acidic foods (this is VERY tough since I love sour and citrus foods!), but there is a very obvious difference in how I feel when I splurge. Once in awhile I can splurge (with the proper medication taken at the same time that neutralizes a portion of the acid) and be okay, but those foods will not be a part of my normal diet again unless they come up with better treatments or a cure. There is a med I can take for my bladder, which makes it so that I am more able to tolerate foods and such, it helps build the lining back up, so things don’t get to the tender part of my bladder under that lining as much and I don’t have as much pain… but uninsured it’s $400 a month (last time I checked, I’ve recently heard more expensive quotes from other friends) so it’s not in the books right now since although I’m insured now I have to wait on pre existing clauses…
Anyway, onto the main point of this post. I’ve been very nervous trying to decide how to handle Thanksgiving with my inlaws. They know how much I love to eat, and I’ve spent a few holidays with them now, so they know how I am about stuffing myself at holiday meals. This year however, I’m having to eat very differently than I have so far, and a big thing is not eating protein, so I was trying to figure out how to do this without insulting them or having to tell awkward answers at the dinner table if asked what was happening. My digestion issues really aren’t dinner table conversation lol. All of us except my father in law have had some type of job in the medical field at one point or another, so 5 of the 6 of us don’t care… but he really does lol. So I was trying to figure out if I fill them in about my medical stuff ahead of time (my MIL is a nurse, so I figured if I called and filled anyone in it would be her) or if I just say ahead of time that my diet is limited right now or what. I asked E the other day, because it was a really big concern on my mind. He suggested we bring left overs home so I can enjoy some of the foods that I won’t touch while we’re there (I’m not wanting to make myself ill here or there, but I’d rather have the pain happen here, and I can’t pass up some turkey completely…), and if they ask just say a general “my health is getting a lot worse, so I’m having to eat a very limited diet right now” type of thing, and I can mention the likelihood of pancreatitis because my MIL will understand, and she can explain later if anyone else has questions…. They do know I’m applying for disability and all, so they are aware I’m not doing well, and after my last appt I told my MIL it was likely something with my pancreas, so hopefully that will keep it from getting too awkward. However, my in laws don’t have the greatest memories for reasons I’m not going into here, so I’m not sure if she remembers about the pancreas stuff or not. I would have worried about all of this anyway, but things are somewhat tense between me and my MIL, or were last time we spoke, so I really don’t want to make the situation worse. So that’s how we’re handling that. And the same will likely be done for Christmas, though I’m hoping that maybe they’ll think to ask if there are any certain foods to include in the meal for that get together. I’m not too worried either way, there’s usually enough variety that I’ll find enough food to fill myself… so it’ll all work out on that end. Another way I may handle it, if I’m still not past this flare, is to just take the Ensure with me that I’ll be switching my entire diet to later tonight and tell them we’ll take left overs home for me to eat when I’m back on solid food again. Either way, it’s covered.