To the future Bex: A reminder

Well I haven't felt much like blogging these days. There are a few reasons, mostly revolving around an extreme paranoia of being judged as a bad mom or as a whiny idiot.

But I thought I should record some of this in the event I ever get crazy enough to consider being pregnant again, not that I made a conscience decision this time to do it.

About two weeks ago I noticed the joints of my knees really grinding together and causing pain. I attributed it to the walks I enjoy taking when I feel well. Then the weather got cold and the pain started radiating through my fingers. Ankles came next, then the hips. I have a lot of swelling especially in my legs after I am on my feet for a while or I go for walks. So I went back to the Rheumatologist who told me around 50% of women with RA go into remission during pregnancy. Umm, that's great...for THEM. I'm back on steroids now and am feeling insanely hungry again. Not just sort of hungry. But ravenous! Add that to the second trimester cravings and you have a crazy eating machine.

So when my body goes through a painful flare, I find that unconsciously I change my posture to compensate for the pain in my joints. Therefore I'm carrying my body unnaturally, putting strain on my muscles. That in turn causes a fibromyalgia flare and now just putting the tiniest pressure on my muscles causes a very painful response. Fucking hell!

Try explaining this to your doctors who already treat every pain patient like a junkie hypochondriac. Add a pregnancy in that and you have the air of a preggo pain pill addict looking for a fix. It took me all day to explain to the OB nurse yesterday that I already had some mild pain pills and are they safe to take at this stage in the pregnancy until this flare goes away? She thought I was looking for a prescription and told me to call my Rheumatologist. I don't want a prescription, I just want to know if what I have is safe to take. If I was addicted to the damn things, I wouldn't have any left because I would have taken them all by now. I've had them for 5 months!

I think I'll go back to the pain doctor because perhaps he can at least prescribe massages and maybe that's covered by insurance. I don't know, hopefully there is something safe and natural I can do to help this if the flare doesn't resolve itself soon. Plus I'll give this prenatal yoga dvd a try.

I know as a pregnant woman I have much more at stake than just my own health. I'm asking questions, not taking anything unless I have to and only if one of my doctors tells me it's ok. And I understand why pregnant women are told to suck it up when they have aches and pains. But what if you have chronic pain and then get pregnant? How do you "suck it up?" What if you are part of the 50% who do not go into remission?

I hate people, especially those in positions of authority over others who view things in a black and white context. Can you tell I'm frustrated?

In other news, to the future Bex, at least the nausea is pretty much gone. I can eat all kinds of foods now instead of broiled chicken and rice. My belly is starting to pop out and I've put back on the few pounds that I lost.

Six more months to go. Hopefully this flare will go away soon and I'll be pain free for a few months, until I'm too huge to be comfortable. I know I can do this, I just wish I felt that I had more support. No one really understands. I don't blame them for not getting it but I hate to be dismissed.

Anyways, my fingers are killing me so I'll stop here. So future me, when you have this cute, wriggling little being in your arms and think awwww that wasn't so bad, well just remember ADOPTION. Also I'd like to throw in the word VASECTOMY too. And remember the PREGNANCY RAGE you experienced as well as the explosive DIARRHEA and intense DRY HEAVING. It will all be worth it future Bex, but perhaps the aforementioned ADOPTION will be best if you two crazy cats want more kids.

Lesson learned

Don't post anything deeply personal on Facebook. (And let me just preface this by saying yes, I understand the irony of revealing my inner demons on this blog. But I'm counting on the fact that not too many of you read this. Haha.)

Yesterday I posted, and later deleted, a comment about how I have started applying for disability benefits. Wow, talk about begging to be judged! Silly me, I thought people had been paying attention to the last 4 years worth of posts about endometriosis, autoimmune disease, chronic pain, surgeries, pain pills, physical therapy, etc. I believe that people in general use Facebook to gravitate towards the drama. It's like they zero in on the posts that will make them GASP! and make snap judgments about others. At the very least, that is the only content that they choose to remember.

I had some people post their questions and opinions about the process. In response to a question, I had posted that education is taken into consideration because the more you have, the government feels that you are more likely to be retrained for a different occupation. Therefore my master's degree level of learning could make it harder for me to be approved for benefits. Then again, my health history may eventually win out on that tid bit of information, but this thread was merely conversational and informational.

A well intentioned commenter then posted, asking hadn't I considered or researched ways to be retrained? Surely I would rather be able to do SOMETHING? It would make me feel so much better if I did something.

No. No I just decided one day that I hated my profession (I profession I dedicated myself to since my first museum job at 17) and rather then switch careers, I'd rather just pretend to be sick all the time, waste thousands of dollars on doctors (who I have all fooled with my blood tests, symptoms and x-rays) and then sit on my ass all day feeling sorry for myself while collecting a check from the government. That is SO much easier then changing jobs. And it is so easy to apply for benefits. Why, you just fill out a quick form and BAM! Instant money! Yeah, that's how it works. You don't have to subject every facet of your life to government scrutiny, going through several denials only to get a trial about two years from your filing date.

Sorry for the anger and sarcasm. I have been trying to figure out how to feel better since at least 2006. I mean, aggressively so. I have been going to doctors constantly, I have received diagnoses, and I am trying to find combinations of treatment to help myself. I spent two years at my last job working a modified schedule, removing myself from the really intense physical labor that we sometimes experienced when putting up and taking down exhibits and moving collections. And guess what? Sitting at a desk was painful for me too. I had intense pain in my muscles, from my neck to my rear end. I tried to make my work station more ergonomic, to lessen stress on myself. Nothing worked. I got up and moved every so often, which helped but it didn't stop the fact that I had about two days of 8 hour work and by the third day I could not get out of bed.

Here is another way to look at: I have multiple, chronic conditions. It's akin to a forest fire. A small fire starts, it gathers force and you have to fight it. You put all your resources into smothering the fire and trying to prevent it from coming back. By the time it's under control, you realize that two more small flames have started in other parts of your forest. But one of them is near a housing development so you race over to that one and work on putting that flame out first. Halfway through this new battle, you look over at the concurrent cluster-fuck of fire on the other side of the forest and realize that one is way out of control now so you give up on the yuppie housing complex and let it just go to shit. Now you've run over to the other fire and work to put that out, looking up occasionally to see the other two fires now raging out of control. And this is how life is. Constantly trying to put down a flare only to find that another one, or two, has erupted.

So tell me, what the fuck should I retrain to do? Don't answer that. Because chances are, I've thought of it. I've tried it. I've researched into it. I hope that one day, I can experience less pain, a lot more energy and I dunno, go back to work at least part time. Or feel confident that I am healthy enough to start a family and be able to give time, love and energy to a child. Wouldn't that be swell? As opposed to getting "free" money from the government, at 1/3 of my former salary, because that is such a better alternative.

However, since the disability process can take two years, because they will undoubtedly deny me at the first two levels of application and because I can't work a regular schedule, I need to start this application now. I need to at least try to find a way to bring in extra money to help us afford all my medications and medical appointments. I need to plan for the worst case scenario, which is that I won't return to work.

So my life lesson this week is to not put anything as serious and personal as this on FB. Unless I want ignorant comments and then be put in the position to tell someone to fuck off or to sit there and defend myself. I'll save this journey for my blog, where I can type out everything I'm experiencing and feeling. Because of the blog, art and my photos, I've been able to help others who also are struggling. That in itself is worth continuing my ranting/blathering/babbling.

My suggestion to all those who find themselves wanting to make a judgmental or ignorant comment to someone going through something you know nothing about: get educated. If you want to support your friend, then find out what he or she is going through. You are already on the internet, fingers posed on the "comment" field. So why not take a minute to google your friend's condition? Then after you read a few pages on what it's all about, then go ahead and see if your comment still applies. I will help you in regard to my own issues. Here is a pretty interesting and not too technical study about the link between endometriosis and autoimmune disease, as well as fibromyalgia, allergies and chronic fatigue (all things I experience).

If you've read this far, thank you. I feel better having vented that steam. Tschus.

Observations on exercise, or: Why I feel so damn old

I've noticed a few things since resuming my exercise goals. When you have chronic health issues, you sometimes have different experiences when working out. (*I am not a doctor, even after staying at a Holiday Inn. These are my experiences.)

So far I've noticed that my muscles are firmer, more toned. I think it's safe to say that doing circuit training with the 3 lbs weights isn't enough and I need to move up to 5 lbs. (I'm Xena!) I am also able to push myself to walk farther. My moods are a lot better because of the natural serotonin boost and because I'm getting out of the house more. These are all the positives I've noticed.

The negative side effects for me so far: I have a hard time sleeping. Seems counter-intuitive, right? Most people workout during the day and feel relaxed and tired at night. Working out seems to exacerbate my insomnia. It doesn't matter if I work out in the morning or in the afternoon. Also, my muscles ache; not in the post-workout way, but in the fibromyalgia-flare way. I think this is a contributor to my insomnia. And crunches aggravate the scar tissue in my abdomen. Lastly, my weight goes up when I workout.

Weight today 166.5. This is down a bit from yesterday and it still could be cyclical.

One of my experiences with fibromyalgia is constant insomnia. As some of you know, fibro makes your nerves oversensitive and you feel pain at a higher intensity than normal people. Insomnia is a symptom of all the fucked up nerves. From what I can tell, working out has stimulated my nerves enough to fight off the Ambien each night. I'm hoping this is temporary but I think I'll go see my neurologist anyways. Also, the fibro flares up when I workout and at night the stiffness really sets in. I am faithfully taking calcium and magnesium to help with this but that only seems to be enough when I'm sedentary. I'm going to try a hot bath and stretching before bed to see if that helps.

I believe the weight gain is my muscles retaining water. Maybe the water retention is adding to the aches? I have no idea. My jeans are tighter so it's not as if I'm losing fat and gaining muscle. This has to be water weight.

In an irrational state, I felt like giving this all up and going back to being a couch zombie. I know in the long run that all this shit will be worth it. I want to be able to fill the humidifier without straining under the weight. I want to be able to safely help my old dog into the car so she doesn't hurt herself. It would also be nice to increase my stamina so I can attend events for a longer period of time before pain and exhaustion set in. In short, I'm not giving up like I have so many times in the past.

To try to prevent strain on my body, I'm mostly walking and doing a few of the circuit training dvds 2-3 times a week.

Apologies if this all seems rather boring and repetitive. I'm hoping that by chronicling this information, I will be able to recognize improvements/mistakes down the road. Thanks to those who have read this far. And double thanks to anyone who cares to share their experiences. Tschus.

PS

Simpson Couch-Zombies

Ouch!

[Click here to learn more about Rheumatoid Arthritis, or RA.]

Bad Bex! I took yesterday off from exercising and I probably should have just done it. I didn't do it today either but to give myself a little credit, I have been gimping around for the past two days. My knees and fingers are really painful lately, which can be attributed to working out at too high of an impact and lots of stitching.

I had my regular rheumatology appointment today with the physician's assistant. She was great and talked with me for about a half an hour. I told her what's been going on, we discussed my last lab results and discussed further treatment options. I was happy to hear my liver levels are back to normal. I'll keep having my blood checked every two months to check liver functions as well as my white cell count.

I also asked her what would happen if I cease taking my medication. What exactly happens if you do not treat RA? I didn't know that the constant inflammation in the body can attack the lungs and heart. Not only would I risk those wearing away my joints and cartilage, but it can cause heart disease. I also asked her if it was common for someone like me to show normal lab results while receiving treatment but still have pain and fatigue. She said absolutely. That's why it's important, she went on, to treat the person, not the lab result. Gotcha.

I also discussed with her concerns about medication and co-pay costs. I walked out of there with two samples of my biologic which made me so grateful. I was able to finally take my shot today and I started a new therapy along with it.

I've noticed that on days when I take my monthly shot, I should take it easy. No work outs, low stress, lots of water and good foods. So for the second day in a row, I'm on my ass. But tomorrow I will be back at it!! Related to this, I found a cool, free tool for people with RA. It's the RA Fit Kit which you can personalize a workout routine to fit your needs and fitness level. Just thought I'd pass that along!

I'm going to chill out today but tomorrow life goes back to 'normal.'

Tschus.

More pinups, but first, the art museum

What a week!  The weekend was great.  I attended an art lecture with a dear friend and we strolled through the galleries afterwards. It's such a nice, calming place to be. I took a few photos:









Photography is allowed as long as you don't use a flash. Use a flash and the docents will descend upon you with open, ravenous jaws.

I managed to paint some of the guest bathroom. It looks rather streaky right now but will be better once I get a second coat up. I'll post pics when it's done. I had an inkling that painting would be a pain in the ass but no idea it would cause the arthritis and fibro shit to flare up so badly. But that is ok, I have time to do all this. I would like to be able to unpack everything and put them away but it's hard to justify unpacking all the china cabinet only to have to repack it so I can paint behind the cabinet. Or bookshelves. Or *insert piece of furniture here* I did hang up some things in my art/rat room because I know it will be while before I paint in there.

We also got out last night for a bit. It was the 2011 Vixen Calendar release party and Miss Vixen Pinup pageant. Since a friend was competing, I really wanted to be there to support her as well as the lovely ladies behind the calendar's creation. It was super fun as the local burlesque troupe mc'd (sp) and performed. Even though we had to leave a little early, we had a really good time! I was super surprised to see they included one of my photos in their back page. I'm a back page calendar girl! Hahaa, I love it. I am so touched and happy! A year ago I never could have predicted all of this: quitting my job, modeling as a pinup, holding firm to my true self. But here I am. To be sure, I haven't handled everything as well as I could and I've made mistakes. But I'm learning and moving forward. Doing the pinup modeling has really been a boost to my self confidence. And it has introduced me to some awesome people and I keep meeting new friends with every event I attend. So if you want to help support the women who have been such an inspiration to me, as well as help out some great animal groups, you can order calendars from Pinups For Pit Bulls and Vixen Pinup Photography.





That's about it for now. Between painting and shuffling boxes, I'm working as fast as I can to finish a new cross stitch for another swap. It's a fun piece and I can't wait to post it. Until then, tschus!

A conglomeration of shit

Don't let the word "shit" fool you.  It doesn't automatically equate negativity.  It's become a widely used word in my vocabulary, easily interchanged with "stuff," "things," etc.  Some say that people use curse words because they have nothing creative or original to say.  It's quite fucking possible.

So what has happened as of late?  I haven't taken many pictures to illustrate this post so I'll just sum things up.We scheduled the move, ended up throwing up on the move date and rescheduled for a Tuesday.  We had a house guest on Thursday and we managed to mildly entertain him amidst a sea of boxes and chaos.  Then a few days later I officially ended my job.  Aaaaand today another pet died.

Job wise: Having chronic health issues makes everything hard.  It's hard to be spontaneous, it's hard to make plans, hard to get to work, hard to get shit done around the house, maintain relationships, take a dump, etc.  The more stressful a situation is, the more the chronic pain and fatigue flare up.  Work became intolerably stressful.  Oh sure there were periods of calm, fun, productivity and fulfillment.  But the stress became too much, we've never had a raise so motivation was nil and I am not sure anymore what the mission is of my former employer or who exactly I was working for.  It's confusing even when you know the details, trust me.  And they aren't worth going into.  All I know is that when I started, the place felt like home.  Everyone was family and no matter what happened, I was just pleased as punch to be among so many wonderful people.  Fifty plus layoffs later and a more corporate attitude, it felt more like we were all heart attacks waiting to happen and the family feeling was gone for the most part.  It became very sad, strained and unsure.  The miscarriage was the last straw even though I'm not sure what caused things to go wrong right from the beginning.

I hope to hell that things get better there for all the great people who still are there.

So am I an archivist anymore?  I don't think you could rid me of my professional nature.  So for now I'll just work on feeling better.  Taking care of the new house, keeping the dogs happy, getting some exercise, finding new therapies.  I am hoping to get elected to a board for a local heritage group next year and I"ll keep my professional, local archivist membership.  I'm not too worried but then again, I can't afford to worry about shit I can't control.I feel slightly worried about my career but the overwhelming sense of peace overshadows the worry.  By staying home and taking care of things, I am not letting anyone down.  There is no FMLA laws to keep in mind.  No coworkers to let down.

House: The new house is great!  I've unpacked here and there and next week I'll start priming the guest bathroom.  I'm sure within ten minutes, I'll hate painting.  But this is the first time I've had the chance to paint my walls.  Wow....no white or beige unless I put it there.  I have a feeling that the large, red wall will have to go.  It's bold and kind of pretty but it's a bit much.  And what goes with red on the corresponding walls?  Not much but beige.  More beige.  Or white.  Meh.



As soon as it quits raining, I'll be able to get out with my camera for some walks. The little bi-planes taking off and landing are neat to watch. And there is plenty of uhhhh prairie grass to look at. :-)

Gardner, KS in the 2000 census was just under 10,000 people. I have never lived in a town this small before. And that's saying something since I'm from North Dakota. The city was founded where the Santa Fe and California Trails split. According to the highly unreliable Wikipedia article, Gardner was the first community founded in Johnson County and the first one in KS invaded by Confederates/slave holders/redneck crazy Nazis during the Border Wars. So far Gardner does not have a Pit Bull ban which is one of the reasons we chose to live here. Hopefully they maintain this "don't tread on me" sort of philosophy, which is unlike most of Johnson County. And our neighbors already left cookies on our doorstep. Very nice. I'll have to bring them a big bottle of vodka to return the neighborly feelings.

Pets: Ratchet's brother passed today. He was having all kinds of issues which I had treated. They were in remission but then he started to scratch a lot, especially his face. Today I found him with his eye scratched out, hanging from its socket. It was a bit horrifying. I called Ron and he took us to the vet, where Clank was euthanised. He was a rat that I saved from being snake food. A brother from another litter to Ratchet. We mostly called him Crank because he was not exactly happy about being handled. He liked to be petted but not picked up. When Ratchet was really sick, Clank would lay on him, groom him more than usual and keep him warm. I'm so glad we were able to give him a good home for the last almost 2 years.



So a conglomeration of shit, to be sure. Thankfully in some ways, I came down with a sinus infection and strep throat. Due to all the antibiotics and the house move and miscarriage, we took a break from trying to have a kid. A month of not worrying when I'm ovulating, taking hormones, worrying that my medications would screw things up, blah blah blah. Just taking a break and trying to live in the "now."

Tschus.

Super Bex

Every time a person feels they have been through it all, something happens.  Or perhaps that's the pessimist's way of viewing the world.  I choose to look at is as trials of strength.  I may be a big, flabby goofball, but mentally I'm solid muscle.  Sure, there are times when I think that  I'm about to crack and the only cure is a vacation to a padded room, replete with wonderful sedatives, "story time" during group therapy and wonderful spa treatments in the ice baths.  But I know myself.  And I know that no matter how bad things look at the time, they will get better.  But I can't say I wasn't surprised this time.

On Saturday I got a positive pregnancy test.  Oh the joy!  We took a picture of the happy , positive test next to my smiling face.  We told a couple close friends and vowed to keep it a secret from everyone else, save Ron's mom.  On Monday I had confirmation through a blood test at my doctor, although they did say the levels were low.  Still positive, yet low.  Today I repeated those tests and my Hcg should have doubled or tripled.  Instead it went down.

Wuh waaaaaaaaaah.

I just got the call that I have a chemical pregnancy, just as I had feared.  That means I indeed got pregnant but it didn't implant in the uterus.  Instead it's getting ready to miscarry.  Any day now.

I only had the emotional high for a few days so I guess there isn't much to mourn.  This does give me some more time to acclimate the new dog, paint the rooms in the new house, etc.  I'm also trying to get off my fibromyalgia medicine as it's not safe past the first trimester anyways.  So the withdrawal symptoms have hit me and I feel exhausted and disorientated.  The pain has returned already and I am not even done taking the medicine yet.  Every time you think that maybe this shit is all in your head, your body readily reminds you that yes, indeed, this is real.

I'm just very thankful that I have some close friends here that I can talk to about all this. Because it still hurts. It still feels like a failure.

In happier news, the house is almost finalized so hopefully we can move on the 30th. I'm ready to paint and look for a new couch. I think the sectional is about done. I give it about 20 minutes on the curb and someone will have carried if off. That's my hope anyways.

Saturday is the Pinups for Pit Bulls 2011 Calendar Release Party. I did not make it into the the calendar exactly but will be included in the back page as sort of an honorable mention. I am very honored because I hope and think that the gals at PFPBs liked me but my photo wasn't exactly what they were looking for. I'm sure they had a lot of creative and wonderful submissions to choose from. However I am happy to be involved with the group as a whole because they bring such a positive and fun presence to a very serious and tragic problem in our pet community. For instance there are about 30 adoptable Pit Bulls and Pit Bull mixes that will die tonight at a shelter due to overcrowding. There are so many dogs...and then there are the dogs that just LOOK like a Pittie. Got to hate the media hype.

But if you are local and out and about this Saturday, I expect, no DEMAND, that you stop by our party! I'm not dressing up for nothing dangit. :)



That is about all I have the energy for right now. I'm so tired and my hands hurt because I've been putting off my arthritis medicine on top of everything. But all will be well in time. It always is! Excuse me while I go cry again.

Tschus.

Here we go….

...again?

Ultrasound on Monday because of bad pelvic pain.  I'm sure some people would love to be on pain killers everyday, but I hate it.  It makes me tired, out of it and constipated.  My gut looks like I swallowed a 10 pound ham.  It's disgusting.  I'm not sure if the ultrasound is going to change the fact I still need to have surgery again, but oh well.  Maybe there is an alien growing in there or something.

The new dilemma is whether or not to go ahead with Lupron afterwards.  Lupron is a drug that puts you into a chemical menopause.  It's typically given in a 3 month shot but I'm told there is now a one month version.  Treatment usually lasts for 6 months, with a shot each month.  Typical side effects are hot flashes, insomnia, depression, dizziness, bone loss, irritability, feeling like you want to fucking kill someone, etc.  With the bone loss, some people have horrible body and/or joint pain.  My first doctor told me without Lupron, she'd see me six months after surgery and that was the only option she gave me.  I switched docs.  My current doctor is very good about not pushing me into it.  But I may have no choice anymore.

Fortunately they do what is call "add back therapy" which adds a little progesterone and estrogen therapy to this.  Not that it makes sense.  Lupron starves the body of estrogen to shrink and halt the growth of adhesions.  But being put into sudden menopause, especially when you are young, isn't easy on the body so they add some hormones back into it to lessen the blow, so to speak.

Some women have no pain after treatment, and some women have a return of their pain when therapy ceases.  Most of the reviews that I've read have been horror stories.  Horrible hot flashes, osteoporosis, mania, fatigue, joint pain, etc.I don't know what to do.  I'm afraid I'll never be able to have kids.  Right now to even THINK about getting pregnant, I'll have to go off every medication I'm on except for my thyroid drug.  Then after about 3 months, we can try.  How can you try to get knocked up when it hurts to try?  There is always a turkey baster, which is an option.  Can I survive without any of my medications for up to a year?

So if I decide I can't do this, should I just have the hysterectomy?  I know this is where I'm heading someday but even that is not fool-proof.  The growths can be anywhere in your pelvis and they react to natural or supplemented hormones.  And because it's sometimes microscopic, one can't be sure that it was all lasered out during surgeries.

So wtf am I supposed to do with myself?  Anyone have any suggestions?  I've read everything from yeast-free diets to having a baby to supplements to menopause/hysterectomy.   I've been sitting here crying because I don't know what to do anymore.  If we do adopt, I'll still have this condition and I need to deal with it.  I'm so fucking tired of dealing with it.  And you know what?  Having a positive attitude doesn't make it go away.  Exercise doesn't make it go away.  I'd like to hold onto both but let's face it, they aren't making a shit ton of difference.

I know, I know.  I'm only 33 years old, there's plenty of time.  Well there really isn't when you come down to all the fucking planning and preparation we will have to do.  And spending a bunch of money on medical bills doesn't really give you a lot to save up for normal, everyday things like a house, car repairs, vet bills, etc. let alone adoption.  Any old crack addict can have a baby or six but you have to be wealthy to adopt a baby.

I know my husband will support whatever I choose to do but I know he wants to be a dad.  And he would be a great dad.  And I am so resentful and angry and exhausted trying to make these decisions.

*sigh*

So anyways, I thought I'd take some photos of how fucking stupid my insurance company is.  The shot I take each month for my rheumatoid arthritis is very expensive.  Because of that, the insurance monkeys said I have to order my shot through their prescription services.  They overnight my shot to me each month in a cooler.  Here is how much packaging they are wasting, not to mention how expensive it must be to overnight a box this size:











So there ya go.  Not exactly upbeat but oh well.  I'm trying to keep perspective on it all but every time I am about to have surgery, I start to get panic attacks.  I know I'll absolutely freak the fuck out once I get in the prep room.  What fun!

Tschus.

“But you look so healthy!”

I saw a top ten list on Facebook of things not to say to someone who has Fibromyalgia.  One of them included the title for this blog.  It's true: I can't tell you how many people have told me I look healthy, I don't look sick, etc.  I'd like to take it as a compliment.  Yes, thank you!  I struggle everyday but at least I LOOK good!  But it's not a compliment; it's insulting.  You don't have to have festering sores popping puss all over the place or be using a cane or wheelchair to get around to be someone who suffers from a disease.  That's why I don't give anyone shit for parking in the handicapped spot when they look perfectly capable of parking 30 feet back.

My dad raised us with the typical North Dakota work ethic.  Laziness is abhorred.  I used to hear these wonderful urban legends about people who left ND for big cities and were hired on the spot by companies when it was learned they were from ND.  "Those North Dakotans have a high work ethic!  You're hired!"  Sitting on your ass while the house needs cleaning or not working hard at your job were not options.  Hell my mom sacrificed time with her family to get her nursing degree at night.  She worked all day and went to night school, with four kids and a husband at home.  My brother some how works his ass off even though he has Parkinson's.

I realize that the best case situation right now would be for me to be healthy and work 40 hours a week.  To contribute to my household financially.  I keep thinking once I find a less stressful job, or lose some weight, or get some relief from medications, I can go back to working 40 hours.  But I'm starting to wonder if that will ever happen.  Having these conditions, I realize how unpredictable they are.  You can be fine for two straight weeks and then wake up one day, unable to move.  Then you wonder, what did I do yesterday?  What did I do to trigger this?  What do I need to change so it doesn't happen again?  And then you realize: nothing.  I didn't do a damn thing different in the preceding days.  I took care of myself, got enough sleep, ate right, keep my stress down as much as possible, etc.  Some days, there is NOTHING you can do to prevent a flare up.  Shit just happens sometimes.

So how to maintain a full time, or even a part time, job when you can't predict one day to the next how you will function?  I guess you push through the bad days no matter what.  Am I a whiner because some days I don't or can't push through?  Some days I give in.

So a question to those who actually read this and have issues of their own, how do you push through and take care of your responsibilities when you feel like crap?  I really think the best thing for me is to find a low-stress position and work part or 3/4 time.  I really hope there is something out there for me to do that.

Right now KC has the most tree pollen it  has had in a long time.  Wundebar!  The extreme allergic reaction I'm having has triggered the fibromyalgia.  Oh well, I guess I'll just take it one day at a time.

Sometime when I have some energy, I'll blog about all the quacks lurking on Facebook.  "DRINK THIS SHAKE AND YOUR CONDITIONS ARE CURED!"  The latest is Reliv.  I am sure it's like Advocare and Herbalife.  It might be convincing if it wasn't a pyramid sales company.

And one final vent:  what the hell happened to the spelling and grammar in this country????  I know the internet and chat boards are contributing to this.  But in high school, I had to take a basic typing class.  Mavis Beacon, remember that????



I see so many people with really positive intentions but they can't persuade me with their arguments.  Here are basic tools of communication lost on the internet age:

* Paragraphs.  Starting a new paragraph for each different thought or idea visually breaks up text.  Not to mention it helps the reader follow your argument.

* Spelling.  Just learn to spell.  Use the spell check and familiarize yourself with commonly misspelled words such as "they're" and "their."  Cripes.

* Grammar.  You is no fool!  I are mad at u!  Sweet Enola Gay, is it the education system or what?

* Punctuation.  Break up a sentence with a period or comma once in a while.  Try it, you might like it.

* CAPITAL LETTERS READ LIKE SHOUTING!!!

I am sorry but I can't take people seriously in writing if they don't at least TRY.  I know I'm not perfect.  I'm blogging and a lot of my blogs are written in a conversational style.   But at least people can get the points I'm trying to make.   If you are dyslexic or have learning disabilities, I think you are trying your hardest and I don't want to hear from you.  You are not the ones to which I'm referring.

That is all.  *sneeze hack*  Tschus.

Zombies, dogs and pin-ups: Oh my!

So what's new?  One of my brothers moved to Germany and my sister is going to be a court judge.  Very exciting!  I'm not sure how my other brother is doing right now; I hope he is well.  Myself?  I am up to the same old things.

First, I'm even more disillusioned with my career.  I am in a really negative place right now and I need to figure out how to change my situation or my attitude.  Both are tough things to change.  It's amazing how toxic stress is to your body.  I've never had problems with heartburn until recently and just general stomach pain.  Right after a really stressful event, I get a flareup of my fibromyalgia.  Seems like common sense but when you are going through something very stressful, you get tunnel vision and don't see the bigger picture.  Something has to give and I just need to figure out what step to take.  I've been mulling over this for a long time and I'm sure my blog reflects that.  I'm ready to initiate change though.

Our home buying program has hit a brick wall.  We can't buy a home here or anywhere until we get over this stalemate with our mortgage counselor.  She won't answer our emails to clarify some of things she's asking of us.  We're extremely frustrated.  I really don't want to stay in this neighborhood much longer.  We've had a lot more cops hanging around.  That makes you feel safer at first - yay!  The cops are here!  But also it's scary.  Why are the cops here so often?  What is going on?  This place sucks.

On a positive note, I've been taking Patton to obedience training once a week.  He's doing so well!  He does have a thing with peeing on people's legs however.  And he doesn't want to do some of the harder things like "lay down" or "shake" but I think we just need some practice.  I'm going to a meeting for people who have or want to train to be certified therapy dogs.  That's our goal so I have to figure out how to get Patton to that point.  Lots of practice and patience.



Of course, I indulge him too much and this is what happens.

I'm still doing a lot of volunteer work for the Pit Bull rescue.  The dogs are really sweet animals but they definitely need to be with people who understand the breed.  There are so many ignorant and irresponsible people out there.  I can't believe the emails we get from people who want us to take their dogs because the dog has become aggressive or has too much energy, etc.  "Take the dog or we'll have to put it to sleep!"  Gah.  But overall it is a very rewarding experience.  If I had the energy to do more, I would definitely do so!

Speaking of energy, I have managed to get a lot more exercise lately.  We are doing the 30 Day Shred, a Jillian Michaels dvd.  That woman is BRUTAL.  The workouts are only 20 minutes but they work everything and I've had a few people tell me I look thinner.  I haven't dropped much weight but I think I'm toning up.  I'll take that!  If I never lose another pound but can drop a couple sizes, I'm happy.  I just want my muscles to be stronger so I can support my crappy joints better.  So far so good.  I feel better about myself and it definitely helps the stress level.  My husband is so supportive too.  We have a 'fridge full of veggies.  Good for grillin'.  I feel better having cut out so much crap from my diet.  It doesn't cure anything and I still have pain.  But it's better then wallowing in a bag of Doritos and Diet Coke.

And I'm sure you've all seen this silly photo by now but this is my pro pic from the Pinups for Pitbulls event at the Record Bar:



I look very pale.

I've also been getting my zombie fix lately.  We watched Dead Snow recently and that was hilarious.  It's Norwegian and subtitled.  There are some fun Evil Dead references which made us laugh.  Very gross and funny stuff.





I just finished reading World War Z by Max Brooks.  It's written as an oral history post-zombie war.  It's well written and brought in scenarios you never think about or imagine with traditional zombie movies.  What if North Korea's bunker system was actually a lot more extensive.  After North Korea sends all its citizens underground, did they all get infected?  When the bunkers are opened up, will there be 7 million zombies in the underground city?  Or what would it be like to go into the all dark, maze-like catacombs under Paris to escape the panic outside.  Only the infected come with you and you have to fight zombies without light or firearms to help you.  Fun, freaky shit.  Very entertaining read!



And the spring zombie walk is coming up on June 4th.  I've been talked into going as a zombie this time.  If I don't have a new job by then, I think I can do it.  I'm thinking zombie paparazzi.  That way I can take as many photos as I want!  I'm such a dork.

I think I've yammered on enough for today.  Have a great Sunday!  Tschus!

Cpn’ Tripps and Spring in KS

I'm watching' The Stand and thinking of swine flu and zombie virus outbreak and all that good stuff.  Seems to me that there are a lot of things in our lives that could go wrong and never do.  But since I don't trust the Government, who can really say it never will?  I hate the Govt. and trust them less then the people I work with.  If that says anything to you...

I've taken Patton to quite a few classes for his obedience training.  I think he's right on track for being a therapy dog.  He's very gentle, obedient and calm.  He serves as a good model for the aggressive and hyper dogs in class.  He really calms them down.  His trainer is also looking at using him for a therapy trainer for other dogs in training.  I've seen  a growly, aggressive dog become really passive around him. Kinda neat.

Work....well that' s just normal.  Nothing new.  Nothing good, nothing bad.  Just..........it is.  Still trying to figure out what to do with my life.

Ron and I have been working out together a lot while he goes to the track to run and I swim in the pool.  It keeps us mobile and burning off steam.  Practice with Patton for obedience is also a lot of work.  I am really happy to do that and to hang out with others who are into dog training and doggie resuce.

All I can do is keep being me and keep trying to work against all the diagnoses that I've been given.  I take my vitamins and supplements and medications and that's all I can do.  Keep on fightin' the good fight!

Tschus!

Mish mash

Holy shit, long time no blog!  I'd like to say there is nothing new in my life but there is tons going on.  So here is an update:

First off:  We beat Bioshock 2 just in time for the March 11th expansion pack. I haven't planned any of the online portions of the game yet so I can't really say much about the multiplayer, online death matches.  However the story was good for a sequel and the graphics, though at first seemed grainy, turned out to be really awesome.  I thought the game was harder overall with more melee type attacks.  Playing it on easy gave you a lot of hints that seemed a little unnecessary but that's ok too.  I love the art deco themes and the characters are interesting.

Second:  Lasik went awesome!  I can see!  It was horribly uncomfortable and while they give you a lot of valium, that just wears right off when you are under the laser.  It was nice that my husband was allowed to sit in there with me and I clawed the shit out of his hand during the procedure.  But the awfulness lasted only about 20 minutes followed by a horrible ride home.  I took something to help me sleep and by the time I woke up 4 hours later, I felt worn out but fine.  I did have to wear some groovy blinders at night for a few days to keep me from scratching my eyes.



I had some lovely impressions in my flesh every morning.  But it turned out really well and I'm happy with it.  No more contacts or glasses.  Schweet.

I've been working pretty hard at my health shit.  I found some books at the Half Price Bookstore which talk about fibromyalgia and endometriosis.  I'm working on a symptom and food diary to try to pinpoint triggers.  During this time I've had a fever that came out of nowhere and am trying to figure out if there is any rhyme or reason to things like that.  So we'll see what comes of this new experiment.  I still would like to lose the rest of the 40lbs I gained.  That means I have another 15-20lbs to go.  Being overweight and chronically ill is not easy.  It just exacerbates all your shit.

No new pets and no pets have passed away, no matter how old and infirm they are.   I'm starting Patton on obedience classes this coming week.  I hope that when he gets over his fear of oh.....EVERYTHING....he will be able to start training for a therapy dog program.  Our vet seems to think he'd be excellent at it because of his very mellow temperament.  He went in today to get his distemper shot and a heart worm test. He's a very sweet dog and I think he'd be a great ambassador for his part Staffordshire Terrier breed.  So many Pit mixes like him are put down right away or taken from their homes in cities with breed bans.  We are learning a lot about this because of our involvement with a pit bull rescue.  This volunteer work has been very rewarding as well as educational.  Just to get it out there, I fucking hate the media.  I hate them all.  Their mission is to sell news by freaking the shit out of everyone in a community.  Period.  Misinformation be damned!  We have to sell newspapers, ratings, etc!  Fuck the truth!  Ok sorry, I'm off my soapbox for now.

Last couple of thing:  I'm going to take a pinup photography class next weekend.  I'm going by myself, which for a hermit, is a big deal.  I'm freaked out by social situations like this but I think it will be fun and informative.  I think the new pin up style with the tatts and vintage/rockabilly themes are awesome.  This all proceeds the Pinups for Pit Bulls event in KC on the 19th.  I'm all for animal rescue organizations, beer and music.  Now, what to wear?  No clue...  The last item of discussion is that I really want another tattoo.  I'm trying to find something that reminds me of my mother.  Yesterday was the 26th anniversary of her passing.  A long ass time ago.  I really miss her and would like my next tatt to be something to do with her. Ron is pretty ready for more ink so we're going to investigate some new tattoo parlors.   And finally, I hope to hit up the roller derby around the end of the month.  It's going to be a girls night comprised of women I work with.  I think we're going to get a little drunk and watch some chicks on roller skates beat the crap out of each other.  That should be fun!

I'll update my blog with another stitch or two when the time is right.  I've got some ideas on the burner for new embroidery and I'm excited to get started.  So overall things are good but everyday is a learning experience.  Some times I fuck up royally and other days I have things in control.  I can't seem to predict from one day to the next how it's going to go.  Just doing the best I can!

Tschus.

Great googly moogly

Isn't that what Mr. Magoo used to say?  Maybe I'm not remembering it right.  I had my eyes dilated today around 9:30 and things are still a bit blurry.  This is what I felt like driving around today:



Yes, I realize I should not have been driving.  I used to really love watching old re-runs of Mr. Magoo.  Maybe I'll have to do a stitch of him soon.  Yeah.........that's the ticket.



Rowdy is doing as well as Rowdy can be.  No seizures since the initial one but he has messed on the floor.  Considering it was below zero a lot, I don't blame him.  He's been hella picky about eating though and that is a pain in the ass.  We are trying different cooked and canned foods.  He likes only the shit that's really bad for him.  Just like a human I guess.   Unfortunately straying from his diet makes him want more water which makes him have to pee a lot more.  So more accidents.



Life quality is still good though so we will not put him to sleep yet.

This weekend was pretty mellow.  I wanted to stay close to home because I took my second shot for RA.  I didn't feel any side effects until the next day.   Here is a quick look at how easy it is to administer:







The side effects for me were sweating, hot flashes, racing heart, stuffiness and sinus headache.  Benadryl helps a lot.  I'll remember that next time.  Hopefully in another month or so I'll start to feel the positive effects.

Not much else is going on.  The only other thing I can talk about is the weather.  That's a good sign it is time to end this post.

Tschus!

PS

In finding the following image (in which I see myself and Rowdy)...



...I found a blog which compares the United States with Mr. Magoo.  Only the blogger calls the US, Amerikkka, and says the US is like Magoo in its relations to the Muslim world.  I could explain further but I feel like just linking it will put me on some kind of watch list so I'll let you read it for yourself.  http://ruminations52.blogspot.com/2007/02/amerikkka-as-mr.html Well, whatever your feeling on our government and its blunders, I am not sure comparing it with the KKK is right.  But whatever.

Have you ever?

Have you ever asked Why Me?  Have you ever cursed God, forsaking His name because of all that you've had to suffer?  Why these deaths? Why these illnesses?  Why these hardships?  I can understand You having a plan for one issue or the other.  but everything in my lifetime?  Why would You do this to me?

I fail to see the bigger plan for a kid losing her mother when she was 7.  For this kid to grow up without much emotional support, feeling isolated, over-sensitive, morbid and sad.  The teenage years being far too serious, looking for warmth and love in all the wrong places, further sequestering emotions from people in an attempt at self-preservation.  Then in adulthood, this kid seeks unhealthy relationships, enters into a failed marriage, goes through illnesses and then major surgery.  Nothing that a person voluntarily and actively seeks, but yet this is the path a person seems set upon.  And then when she thinks the worst has passed, major/chronic illness sets in.

Why?  If you claim to be a Christian, you may wonder why someone curses God.  Why the fuck are you so set against me?  Why me?  Fuck you God....I've had enough.  I've been through enough and I remained faithful.  Yet you continue to put me through this hell.  What is your plan for me?  Is there a plan at all or am I putting my hopes in a false God?

Even if you are the most devote, ,you've been though this or will at some point.  This is the story of Job.  And maybe people like me are not part of some grand, fucking divine plan.  Maybe we are simply the strongest who survive the whole plot, the whole story.  Perhaps the strong and healthy people as the ones who will succumb quickly in the grand scheme of things.  Maybe the sick ones are the people who live the longest because we put up with the most, endure more hardship and because of that, slowly become stronger in the end.

Unfortunately those of us who go through these diseases are the most isolated.  We are lucky to find one person in our lives, be it family, spouse or friend, who will stay with us through all the trials and tribulations.  I found today that my family, although loving and wonderful, cannot be there for me.  They just don't understand and aren't capable of the empathy I need throughout this illness.  It's not their faults, but that is just life.  And it is hard for me to grasp.

When you are chronically sick, you quit communicating the truth to others.  I've only told those at work because I've felt forced to.  They have to pick up my slack, and they need to know why I'm sick.  But my family and friends have not heard the whole of it, nor have they had to.  I have tried, however, to reach out to certain acquaintances and family, but I don't feel that they understand.   I feel no blame or anger about that.  I can't say that I would feel any different if I were in their situations.  When I try to talk to others about how I feel emotionally and/or physically, others don't understand or think I'm making it up.  Therefore, deep down, I question whether or not I'm crazy.  Maybe this isn't real?  Maybe I'm an attention whore, just like they think?

I feel like I have to make things up or only tell half-truths about my life to people.  "Yes!  Everything is wonderful.  We are so blessed to be living amazing, happy lives!!!!!  Blah!  Blah blah blah!"

At some point, we have to realize that we are sick.  We have X, Y and Z to deal with and our priorities involve getting through our daily shit without physically collapsing or breaking down emotionally.  Getting through a day/week/month of taking care of our kids, our bills, our marriages, our family, our friendships, our jobs is a lot to deal with.  When you feel you have to make excuses for this or explain it to others, it's hard.

I'm not a drama queen.  But I have major health issues that prevent me from working full time, from actively involving myself with relatives, that prevent me from trusting others and that keep me from having a party hardy lifestyle.  Hell I feel lucky if I get through the day on the most minimum of prescription drugs AND am still able to operate a motor vehicle.  I'm so damn tired of it and I keep thinking it's temporary and it will get better.  This isn't really my life.

I guess it is my life.  No matter how many drugs I take or what I eat or don't eat, it doesn't go away.  This is my life.  Period.  And we better find a practical way for me to deal with it.  And I better quit feeling bad at the friends I lose because I can't go hang out every time they want to.  Or my boss doesn't get why I can't lift something over 20 lbs.  Or why I don't volunteer myself to work extra hours.

This is my life now.

And because of who I am, I cannot end a post on my blog with a subject matter so serious.  So I leave you with all my feelings, my whole heart, my spiritual frustration and a photograph of one of my pet rats in my husband's pants.  Good night.

Lethargy/Self-pity

I'm not sure if it is depression or plain laziness.  I haven't  been blogging much lately.  Of course, that could also be because of the lack of excitement in my life.

Well ok that's not entirely it.  We've decided to stop trying for a baby for a while.  My period isn't getting any better, in fact it in some ways is worse.  The pain is still there, although managed by pain killers, but it's lasting longer and is heavier.  We've tried for over a year and nothing.  Well we haven't tried THAT hard...it hurts to try so much.  On a recent trip to the GYN, I was told some of the pain I experience seems to be related to autoimmune disorders.  Seriously?  So sex is painful and it's just another by-product of other diseases?  Just kill me now.  She did say she didn't know what the connection is, only that a lot of women who have similar pain also seem to have immunity issues.

I have also been on steroids for a long time and can't keep going on that.  I need to go on some real RA drugs and those aren't good for babies unless you want a super pharmaceutical mutant baby.

I don't feel like a real woman.  I feel really dumb just TYPING that statement but it's true.

I'm sure once my hormones even out that I will feel better about it.  Having a birthday coming up isn't helping as the TICK TICK TICK sound just gets fucking louder.  Plus I'm having all these dreams lately about our children-seeing them, losing them, not being able to have them....they are so real.

It's not meant to be right now.  In the meantime we'll keep working towards our goal of getting a house and getting me healthier.  I have been in denial and I can't live that way anymore.  It isn't going to get better with nutrition, willpower, bare minimum medication, etc.  This is my life now.  Whether I want it or not, reality is setting in.  I just don't want to be super medicated but hey, what's one or two more drugs in my system?

All right, enough whining and bitching.  Life is hard, shit happens, etc. etc. etc.   I'll get over it and venting is helpful.  Thanks for listening to my discombobulated bitch-fest.

Here are some crafty things I've been working on lately.  I've only completed one and a half so far because I've been too damn depressed to do anymore than that.  *sigh*  I'll get them finished soon!

Rheumatoid arthritis

Lately I've been feeling a lot better mentally and physically.  Some days I think I can go back to a 40 hour work week.  And then I hit a set back.  I paid really close attention to my symptoms this week though and tried to analyze things as they came up.  I'm too lazy and inconsistent to do a symptom diary though.  Yes, I lick ass.  Such is life.

I thought perhaps if I avoided stress completely, kept up on sleep and all my medications, I would be able to control my health.  How egomaniac is that?  You can't control everything.  You can be doing everything right, everything within your control, and still feel like shit.  It really hit me on Friday.  I had organized a potluck for Halloween at work, assisted a researcher all morning and then watched the desk most of the afternoon.  I did some running around and helped people out.  By 1:00 I could feel a weight in my chest and the skin on my face was red and felt like it was on fire.  By the end of the afternoon I was really run down.  When I got home, I felt like there was a fire lit in my torso, my knees were stiff and sore and I was limping.  I was shaking a lot too.

I really did have a good week overall.  I was able to participate in some professional development and networking at a symposium.  I got some things done at work.  I cut out some toxic people from my life too which felt extremely liberating.

My point:  I did everything seemingly right but I had a flare up nonetheless.  I was just tired out.  I did too much and my body rebelled.  What's really hard is that I know to people who don't know me well, I look pretty healthy.  I'm young and not toooooo overweight.  I think it's hard for people to understand that you can look great on the outside but feel shitty on the inside.  However, when I think about it....I must not look too healthy all the time.  I've had strangers offer to help me carry my groceries and insist on having me do the drive through pick-up.  Some days I lean heavily on the shopping cart and limp along.  Or days when my elbows and arms ache so bad, I hold them close to my body and have a hard time picking up the littlest thing.  So I guess when I think about it, there are people who intuitively pay attention to body language more than others.  Those are the kinds of people who pick up on this stuff.

So lesson learned.  I can't always control when a flare up occurs.  Gotcha.  I'll keep that in mind.