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.

I saw a new doctor (Rheumatologist, Internist, Nutritionist) on Wednesday. I’m not sure what I think. Johnny will be going with me to my next appt, and asking his own questions to settle his own mind, then we’ll decide.

I am really more comfortable with the conventional treatments than with what this guy offers, but if he can set mine and Johnny’s minds at ease, we’ll move forward with him.

I did my labs for him today (a blood test and urinalysis)… it took 3 pokes this time to get into a vein, and then the blood was moving so slowly that she had to take off the one vial and put on another, and got the amount between the two. It hurt pretty bad too… I’m expecting bruises on at least one any time, though since she couldn’t get into that vein, it may not bruise?

Idk… we shall see what we shall see.

I have no idea how consistent I’ll be, just so you all know, but I am back to blogging here!

I’m off the haldol (It caused some scary shit that is mostly cleared up now and wasn’t all in the paperwork they give you, I’ll go into more detail when I can get to my journal), and on Abilify.
Not sure it’s doing anything for me yet, what I’m feeling may just be the result of going off the haldol.

Side effects from the abilify have included nausea/vomiting, sleep problems (which are clearing up now) and restlessness.

If it works for my bipolar I can deal with it!

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On the lupus front – not so good. I’ve got to get a rheumatologist again. Nothing new, just lots of pain from the weather, and a need for more aggressive treatment so it doesn’t get worse. In the same boat with fibro.

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Endo – my ovary is waking back up from it’s 2 to 3 month nap due to the haldol (I didn’t ovulate while on it) and is making me hurt pretty badly.

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Grief – here’s the big one. I’ve acheived peace most days. I’m still sad, I still miss her, I always will, but there is a calmness about it all..

With a heavy heart I must say that my flare free period is over with my lupus and fibro. The good news is that I had either 3 or 4 days without it, and I *know* they can happen now, as the last time before this one that I had any truly pain free lupus time was when on steroids and trying to keep from having Lily, it lasted less than a week. The time before that was one day in June 2009. :/

At least I know they can happen without med changes (this time I had no meds added to my cocktail to change the flare!)….

I’ve got pictures to share, I’ll start with the serious ones.
I (for a bit) took part in POP or put on purple (for lupus) today.

Jumping in an effort to show my sarong off

Showing my purple sarong off.

Now for the goofy pictures.

Cleavage Creature

Bosom Buddies.

I will soon be leaving on a trip with my husband and one of our cats (who has separation anxiety, and is also my comfort animal). We will be gone for a few weeks for our kids’ winter break, as we were unable to see them this summer. We will also be spending a bit longer than that with my parents, aunts and uncles, and cousins (all in the same area as the kids live).
Although I have not done this trip driving since we moved out of state in late 2007, I have done it via train (while pregnant, and on the way home I was on rest), so I have some idea of what my body needs.
I also know our vehicle well enough to know that I will need padding on the seats.

I also will be taking plenty of snacks and drinks, making sure ALL my meds (even ones only taken once a day) are accessible, as well as other medications (OTC) that can help. I’ll make sure the icy hot is available for sore joints, and to have some heat and ice packs that are usable on the go.

Stress is a big factor to prepare for, and to do so I will be making sure I have things that help me calm down available. For me spearmint candies help to calm me down. I’ll also have my favorite blankets in reach, and be wearing extra soft clothing. I will make sure the music we have with us is calming for me. I’ll be dressing in layers to help with the fact my husband stays warmer than I do, and will want the heater down before I do. I will have my photo album close by so that I can stop and look at pictures of my family if I need to, as a reminder of why I’m putting my body through more stress than usual by doing this trip.

To help prevent some of the stress in the last couple of days before we leave I have started packing non-essential items now, and getting refills on my prescriptions so that I’m set with my medications. I am doing a bit each night so that I can go to bed after, and making sure I have plenty of time to get everything done so that it’s not needing to be rushed the last couple of nights.

As I mentioned my husband and my comfort animal will both be with me, which will help with stress as well, as I can use Mischief for comfort as needed, and my husband will be with me to talk me through as we go.

September 12th-18th is Invisible Illness Week. We all know that awareness is so important, and part of events for that week is the 30 things that affect us living with illness, and perhaps will help to gain a wee bit of understanding.

1. The illness I live with is: Endometriosis, fibromyalgia, interstitial cystitis, vulvodynia, vaginismus, lupus (SLE), bipolar disorder
2. I was diagnosed with it in the year: 2005, 2006, 2007, 2008, 2011.
3. But I had symptoms since: For years… .some my entire life, some just a few years…. most since my teen years at the latest.
4. The biggest adjustment I’ve had to make is: Listening to my body
5. Most people assume: That because I’m so young I can’t be so ill.
6. The hardest part about mornings are: Getting out of bed, whether it’s actually am, or just when I wake up.
7. My favorite medical TV show is: None, I can’t stand them! – The closest I get is Sons of Anarchy, where one of the women is a doctor.
8. A gadget I couldn’t live without is: laptop/pc
9. The hardest part about nights are: When it starts cooling off more my pain goes up.
10. Each day I take a minimum of 8 pills & vitamins….. usually I add at least 4 or 5….. in the form of pain management.
11. Regarding alternative treatments I: Don’t usually take them, but I am willing to consider them and talk to my doctors about them. I do have an alternative treatment I use to help my liver with all the other meds I take.
12. If I had to choose between an invisible illness or visible I would choose: I really don’t have an answer for this. They both come with different challenges. I think I’d stick with what I know.
13. Regarding working and career: I am currently unable to work. I’m trying to get my health back enough to work part time again.
14. People would be surprised to know: How it is so hard some days and so easy on others….
15. The hardest thing to accept about my new reality has been: losing hopes and dreams, and struggling to get them back.
16. Something I never thought I could do with my illness that I did was: have a biological child, and deliver vaginally.
17. The commercials about my illness: are terrible. At least the PSAs about lupus, done by lupus patients are ok.
18. Something I really miss doing since I was diagnosed is: signing
19. It was really hard to have to give up: sign language
20. A new hobby I have taken up since my diagnosis is: crocheting
21. If I could have one day of feeling normal again I would: go to the beach and play in the ocean with my kids.
22. My illness has taught me: that I can and will survive through a lot of difficult times!
23. Want to know a secret? Sex hurts, and I usually pay for it afterwards, but Johnny and I still have a sex life through it all. (This is HUGE when you understand how sex is (or rather ISN’T for most people with chronic illness who I’ve spoken to)
24. But I love it when people: Try to understand and learn about what we are going through.
25. My favorite motto, scripture, quote that gets me through tough times is: “Don’t cry because it’s over. Smile because it happened.” Dr. Seuss
26. When someone is diagnosed I’d like to tell them: Research. Lots of research. Advocate for yourself off that research. If your doctor isn’t treating you how you think they should be, get another opinion (3 years into diagnosed lupus I’m going to be doing this soon, if things don’t change during my next appt, as my lupus has become more active again). Listen to your body.
27. Something that has surprised me about living with an illness is: I’m not really sure…. I guess how much of a difference just having a name for what’s wrong with me changes things.
28. The nicest thing someone did for me when I wasn’t feeling well was: make a meal for me, or clean the bathtub for me so I could take a bath.
29. I’m involved with Invisible Illness Week because: We desperately need awareness and research and understanding!
30. The fact that you read this list makes me feel: so very grateful to you and for you being in my life!