December 2008


I sent this out as an email to my family, and since I’m still not back to typing very well (will explain later) I decided to just copy and paste it.

Hi Everyone,
I had an appointment with the rheumatologist today, and wanted to let you know how it went.
She looked over all the blood work, talked to me about my symptoms, and told me I definitely have lupus, though she needs some more lab work, so off to the lab again. My heart rate was fast when she was listening to it, and though she forgot to mention it during the appointment, her assistant called me a few hours later and told me they want to set up an EKG. So this will be EKG number 3 in 2 months. I go for that on the 29th. I am on blood pressure medication for my raynaud’s phenomenon, as it will help to keep the blood vessels in my fingers and toes from spasming, and help keep me from losing circulation to them and having all the pain and difficulty with my fingers and toes. While I was there she looked at the vessels in a couple of my fingers and said that they look good, so that is excellent news. I also am on Plaquenil, which is a common medicine used to treat lupus, it is also an antimalarial. It is supposed to help with the joint pain and the rashes I get. Those seem to be the only issues my lupus is causing, so this is excellent news! The lab work will be the last of the tests (at this point, they will continue to check them) to give an idea of how well my kidneys are working at this point, it will be blood work to show which of my antibodies are so high so that she can get a clue as to what my lupus may be likely to do, and it will be blood work to show if I have the antibodies that point to blood clots forming to easily, which will show if I will be able to go back on birth control for my endometriosis and other reasons or not. I think that’s everything that we were told today. We go back at the end of next month (a week after E’s birthday) to find out the lab results and for her to monitor how I am doing with the treatments she has me on, which will also probably include tweaking them and possibly adding more in if necessary.
Merry Christmas!!!
J

I sent this out as an email to my family, and since I’m still not back to typing very well (will explain later) I decided to just copy and paste it.

Hi Everyone,
I had an appointment with the rheumatologist today, and wanted to let you know how it went.
She looked over all the blood work, talked to me about my symptoms, and told me I definitely have lupus, though she needs some more lab work, so off to the lab again. My heart rate was fast when she was listening to it, and though she forgot to mention it during the appointment, her assistant called me a few hours later and told me they want to set up an EKG. So this will be EKG number 3 in 2 months. I go for that on the 29th. I am on blood pressure medication for my raynaud’s phenomenon, as it will help to keep the blood vessels in my fingers and toes from spasming, and help keep me from losing circulation to them and having all the pain and difficulty with my fingers and toes. While I was there she looked at the vessels in a couple of my fingers and said that they look good, so that is excellent news. I also am on Plaquenil, which is a common medicine used to treat lupus, it is also an antimalarial. It is supposed to help with the joint pain and the rashes I get. Those seem to be the only issues my lupus is causing, so this is excellent news! The lab work will be the last of the tests (at this point, they will continue to check them) to give an idea of how well my kidneys are working at this point, it will be blood work to show which of my antibodies are so high so that she can get a clue as to what my lupus may be likely to do, and it will be blood work to show if I have the antibodies that point to blood clots forming to easily, which will show if I will be able to go back on birth control for my endometriosis and other reasons or not. I think that’s everything that we were told today. We go back at the end of next month (a week after E’s birthday) to find out the lab results and for her to monitor how I am doing with the treatments she has me on, which will also probably include tweaking them and possibly adding more in if necessary.
Merry Christmas!!!
J

I’ve been home for a month and a half or so now… something like that… on a leave of absence from work. I watch the temp on my computer every night, I have an addon in firefox that keeps track of the current weather. It’s not always completely correct (for instance sometimes it says sunny when it’s completely overcast)… but I suspect the temperatures are pretty close, even if I have to update it from time to time since it doesn’t always update itself.
Last winter (and this does include the beginning of 2008 of course) we had very cold weather and I think at one point we were in the negative teens at 9am when I left work work. Today… at 3am or so… it was a whole 3 degrees outside. That’s the coldest I’ve seen it get so far…. I think before this morning the coldest was… 7 or 8 degrees. We’ve had a nasty storm since Saturday… it’s currently ended, and we’re waiting on the arrival of a second, which will dump more snow on us… and let me tell you, I feel miserable. I love snow.. and I have been enjoying going to the windows and watching it fall… but this time, I’ve not been able to get outside to stand in it, or enjoy it like I used to.
My joints are killing me… my middle finger on my left hand is swollen immensely, though it has finally started going down.
My muscles hate me – though my legs seem to be the worst for this.
I’ve got a horrendous neck ache (though, with a heating pad and pain meds i am managing to keep it all at least down to just being miserable… it hasn’t stopped me from moving yet) which I hope keeps from getting worse, as when it gets too bad I’m almost paralyzed… something my ex seemed to think was all in my head… part of what drove me to leave him was the way he reacted when my neck got so bad I had to crawl to the kitchen to get pain meds… I couldn’t walk. And he expected me to vaccuum and told me it was all in my head, and refused to help me. I had E (at the time my best friend, now my best friend and husband) walk over and pick me up, and drive me to his house in my car, so that he could rub my back and neck for me so I could at least move enough to get my own food, and so that I could hopefully sleep (I woke up from the pain and pressure in my neck and never managed to fall back asleep). With my car there I was able to drive myself home once I started feeling well enough to do so. I call that my first lupus flare, though at that time I didn’t have enough symptoms to get diagnosed, and it was a rare occurrence for me to flare… I’ve definitely had a lot more issues the last few months with it all.
I’ve got a low-grade “lupus fever” going on… I’m probably staying around 99.. .which for me is a fever.. my normal is around 97.8 or so.
From all the tenderness in my muscles, and all the pain in my vaginal area that this is all causing, I’m having a vaginismus flare. There are a lot more things causing it besides just all the tenseness from the storm… but that’s not helping at all.
And I’m exhausted. I slept for 14 hours, from yesterday afternoon to this morning, woke up, felt like I was groggy but could take on the world, and less than two hours later started crashing again. Part of what got me that much sleep was taking my flexiril to try to calm all my muscles down some.. .but that usually only helps me relax enough to sleep for 8 – 10 hours.
I have muscle inflammation all around my left kidney… I hope it’s not the kidney… my kidneys are functioning normally from the look of the tests that have been done, but that doesnt necessarily mean that some flares wouldn’t cause kidney issues if I understand correctly. Either way, my kidney and the surrounding areas hurt…
This has just not been a fun few days for me.
Like I told E the other day (I don’t think I mentioned this yet) I feel like this storm is trying to kill me.

I can’t tell you how amazing this documentary is. Ja has CFS (Chronic Fatigue Syndrome), my mom has FM (fibromyalgia) and so do I. And if I’m not mistaken those two are related, so I wanted to see this when I found it on Netflix earlier.
There is so much information on there that I found fascinating, and I wish I’d been posting this as I was watching it, to share some of the things I found out. One of the things that is so interesting is that not only does it just affect people randomly, but there are recorded outbreaks of CFS. Many of them. The best recorded was in Florida in the… 1950’s I believe is what they said. And I find it heartbreaking (partially because I can relate so well to having heard this) that the CDC basically said “it’s all in their heads”… but the worst part of it… the CDC never even let the doctor’s know the conclusions they came to, the woman (who is a CFS patient) who made this documentary took the reports to the doctors and patients involved in the outbreaks. I also found it heartbreaking that the women from t he outbreak in Florida expressed how they wished they’d had a name for it, so they could say “see I am sick, it’s not just in my head”, and also in order to be able to grieve for it all. I know how that is, that’s one reason that although, yes the lupus and everything else is difficult to deal with, I’m grateful to have all of the illnesses diagnosed, because I can say “I know what it is, I can grieve, and also I can start getting it all under control.” At the same time, with most of my illnesses, so little is actually known, that it’s one of those “ok, I’ve got a name… is there even anything we can do?” and that’s difficult. My lupus is what I seem to have the best chance with… as it’s been pretty studied over the years… but there are still so many more questions than answers. There are estimates that only 4 – 12% of CFS patients actually fully recover… that number is waaaaaay too low… word needs to get out about CFS, and other illnesses, like the ones I have, so that we have a chance of actually raising the numbers of people who recover from all these illnesses, and hopefully eventually we can actually prevent all of this.
Anyway, all of this to say PLEASE watch that documentary and get an idea of how it affects people, and get information out there for all of the patients with CFS, and other similar illnesses.

I can’t tell you how amazing this documentary is. Ja has CFS (Chronic Fatigue Syndrome), my mom has FM (fibromyalgia) and so do I. And if I’m not mistaken those two are related, so I wanted to see this when I found it on Netflix earlier.
There is so much information on there that I found fascinating, and I wish I’d been posting this as I was watching it, to share some of the things I found out. One of the things that is so interesting is that not only does it just affect people randomly, but there are recorded outbreaks of CFS. Many of them. The best recorded was in Florida in the… 1950’s I believe is what they said. And I find it heartbreaking (partially because I can relate so well to having heard this) that the CDC basically said “it’s all in their heads”… but the worst part of it… the CDC never even let the doctor’s know the conclusions they came to, the woman (who is a CFS patient) who made this documentary took the reports to the doctors and patients involved in the outbreaks. I also found it heartbreaking that the women from t he outbreak in Florida expressed how they wished they’d had a name for it, so they could say “see I am sick, it’s not just in my head”, and also in order to be able to grieve for it all. I know how that is, that’s one reason that although, yes the lupus and everything else is difficult to deal with, I’m grateful to have all of the illnesses diagnosed, because I can say “I know what it is, I can grieve, and also I can start getting it all under control.” At the same time, with most of my illnesses, so little is actually known, that it’s one of those “ok, I’ve got a name… is there even anything we can do?” and that’s difficult. My lupus is what I seem to have the best chance with… as it’s been pretty studied over the years… but there are still so many more questions than answers. There are estimates that only 4 – 12% of CFS patients actually fully recover… that number is waaaaaay too low… word needs to get out about CFS, and other illnesses, like the ones I have, so that we have a chance of actually raising the numbers of people who recover from all these illnesses, and hopefully eventually we can actually prevent all of this.
Anyway, all of this to say PLEASE watch that documentary and get an idea of how it affects people, and get information out there for all of the patients with CFS, and other similar illnesses.

So my endo decided to get really bad again today. My lower back has been bugging me, and my left side is hurting really bad again.
That by itself would normally keep me awake. However, I found some old pain pills that I had kept, and forgotten about (hence them not being used yet), so I took a dose, and now I’m wide awake, because I’m actually able to function. This is annoying, because one, my body is tired, but since my brain is clear I can’t sleep; and two, I’ve been up a lot more hours now than I have been in quite awhile…. which means I’m messing up whatever sleep schedule I had left, and I’m going to end up probably reversing my sleep schedule, just in time to go back to working nights…. ARGH!!!
Hopefully here soon I’ll be able to get my brain to quiet down enough to go to sleep… and I think tomorrow I’ll take one of my sleeping pills (amitryptyline – can’t remember how to spell it) and get several hours of straight sleep before I need to wake up with E.
Hopefully I go back to sleep soon – I’m really tired, and the fact I’ll only doze tonight, because I plan to have music or netflix stuff on to keep me at least partially awake, means I’ll be in more pain tomorrow probably. Grrrrrrrrr…………..

I’ve had people talking to me lately about two different things that *could* help with my endo… and sounding like it’s fact it will help me.

These things: getting a hysterectomy, or having an IUD (Interuterine device) put in. I’m against both of these ideas… and thought I should explain why.

First off, the hysterectomy. I know a few women this has worked for… however I do not want one at this point. One, it can be highly dangerous for someone my age to get a hysterectomy, because at this age I shouldn’t be without the hormones, and for it to work, I need to be off hormones for … I’ve heard 6 months as the most common amount of t ime… due to the fact endo has a definite hormone connection… that’s also why a full hysterectomy is much more likely to work than just removing the uterus. Two, I don’t know if I’d be allowed hormone replacement therapy due to my lupus… at this point I can’t take birth control either, due to concerns about stroke… I will be getting an answer on the birth control (hopefully) on the 23rd, when I meet with the rhuematologist. Three, my endometriosis is somewhere between stage one and stage two (there are 4 or according to some doctors 5 stages of endo, 1 being lowest, 4-5 being the worst) so it’s highly unlikely a doctor would give me a hysterectomy at age 23 with this stage of endo, especially with no biological children. It’s going to be a fight just to get the ovary that gives me problems taken out… and by the time I can even get another sugery done I’ll probably be 24 or 25. (this depends on if I can go back on birth control or not… if I can’t … we may have to find a way to get one done a lot sooner…) Four, I am not ready for all the changes that would happen with having a full hysterectomy, especially at such a young age. Five, a hysterectomy is not guaranteed to work (as explained in number 1, and at this link , the National Institutes of Health, and at the endometriosis.org treatment page as well as at their page about hysterectomies) and I know a few women, some online, and one in person, who have had to have more surgeries since their hysterectomy, than they had before, due to endo growths and/or adhesions (growths that – from what I understand – are caused, at least, in part by the surgeries). These adhesions can be just as bad, or worse, than the endo about making organs stick to each other. Six, if I can even stand a chance at getting pregnant, I would at least like to try, depending on what autoantibodies I have, if any, with the lupus that can affect pregnancy and/or the baby/child, and the adult they will become.

As for IUD’s… I have some links to provide for that as well. Though, as I’m starting to hurt, that will probably wait until tonight, or at least until I soak in the bathtub, take some pain pills, and am back at my computer with my heating pad.

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