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.

Advertisements

I did A LOT of driving yesterday. My perinatologist’s office (well the one I’m seen at, which he’s only at 2 days a month) is somewhere between an hour and a half and two hours away…. so I get in up to four hours of driving in a day when I have to go there, plus sitting in a doctors office, and the worry that accompanies those appointments, etc.
I know that even being in a car for an hour or so (the drive each way to my OB’s office) is hard on me, so I knew this was going to be difficult for me, and I made sure that we had nothing going on last night so that once I got home I could just sit and rest until curling up in bed. Johnny wasn’t even able to make it because this weather we’re having is so hard on us, and he’s out of work right now, so no ins. for meds, so he’s off pain meds and had himself weaned off, so there was no way he had enough pain management to be able to go with me.
I went to bed before 10 last night (though Johnny was helping me with some personal care – shaving, that sort of thing, so while I was in bed it was probably closer to 11 before I fell asleep), and ended up out of bed again at midnight or so, hurting so bad I could barely move or breath (not that my chest hurt, but just that my pain was so high it was taking effort), and trying not to throw up from the pain. I eventually started crying from the pain, which is pretty rare for me no matter how severe. Usually if I’m crying when I hurt, it’s my depression kicking in, not from how much I hurt. I finally got some food (bread with pb on it) in me, and got the pain meds taken, but it took something like an hour to kick in enough for me to consider laying down. Thankfully my friend Sara was awake and let me cry and whine and rant at her for a few while I let the emotions out, then we talked about other things until I was able to rest again.
I slept (with a lot of tossing and turning) until about 9 this morning, when I couldn’t lay in bed anymore and got up. I had breakfast and took some meds, then we had an appt to go to, which unfortunately had to be cancelled due to some vehicle issues (I may have left the lights on and killed the battery, and we couldn’t find our jumper cables in time)….
My pain has kept on going all day, and I can only tolerate so much of my pain meds in a day …. I’ve always had trouble with pain meds, but with the pregnancy I’m having even more issues with them. I’m hurting enough now that I’m considering wearing what I have on right now to my PT appt…. The only time I wear anything but jeans or shorts out (or currently maternity pants) is in the winter when I will wear a pair of warmup type pants I have that are better for dealing with the temps we get out here, they are warmer than my jeans. And they don’t look like pajamas.. these are obviously not clothes that I’d wear outside the house normally… (The ones I’m currently wearing)… but I hurt so bad that the thought of changing again into anything but these ratty old pants is making me sick and cry. 😦
I HATE NIGHTS AND DAYS LIKE THIS!!! 😦

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.

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. 🙂

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.