Just Another Bohemian Redneck

I called my mom today and the first thing she said was, “we had a strange call today and I couldn’t decide if I should call you or not.” Not the most reassuring thing to hear. Apparently my aunt had called and her youngest son (20s) is in the hospital with weakness and vision loss. They suspect he has MS. My mom is freaking out both because my cousin is sick and that I possibly have been misdiagnosed all along and not getting proper treatment. I don’t have any way to reassure her on that score…it kind of makes me nervous too. I feel really bad for my cousin too. He just graduated from college and gotten a really good job. At least I can be there for him…I certainly know what its like to have life turned upside down by chronic illness. I just wish he wasn’t having to go through it at all…nobody should have to go through chronic illness.

I had my worse doctor visit ever…not only did he not come in to see me once…when I started crying from frustration his physician’s assistant who was a total twat patted my hand and told me, “see you ARE depressed, a psychologist will help.” GRRR! I’m not fucking depressed, I’m fucking pissed! Not only that they didn’t want to talk about my erratic blood pressure they just told me to consult with a primary care physician because they didn’t do that since it probably didn’t pertain to my condition. I wanted to cuss them out and just walk away because it proves that don’t know anything about my condition.
They grudgingly did the blood work and thankfully something came back abnormal or I would probably be labeled a hypochondriac there.

So I broke down and went to urgent care because I started vomiting and that freaked me out. The urgent care just examed me and xrayed my belly to look for free air or an obstruction. Thankfully nothing like that…they were reluctant to do anything else because of the ‘complexity’ of my issues. They were sympathetic to my pain, but basically told me I have to tough it out until I can talk to my regular doctor. I knew I should have stayed home, but even if I had talked to my doc today it would have been late and he would have told me to go to urgent care anyway to rule out something serious. So…meh! Going to doctors always makes me feel like an idiot even when they believe me…

Well, I am paying for my weekend. I yawned earlier and my neck popped…makes no sense to me how that could happen…now my whole body is freaking out and if I let my left arm hang my hand starts turning purple! My husband wants me to go to the doc, but I am sure ice and rest will do better than anything they could do for me.

UGH! Very occasionally I will get a spasm in the muscle that runs underneath my carotid artery in my neck…every time I think my artery is about to explode. The stupid thing spasms so hard I can see it in the mirror…gross…gross…gross! It doesn’t really hurt either…just uncomfortable and a bit unnerving. I have muscles all over that will do that randomly too. It is happening more often, so I get to try to explain what happens to the doctor and get the Look. The “how do I NOT show I think she’s crazy” look. I also get to try to explain how the savella has raised my resting heart rate 30+ bpm, but lowered my blood pressure…and how I suspect that the fevers I’ve been having off and on lately are directly related to the medicine. I will get the Look for that as well.

My husband had to have two molars extracted the other day… Bless his heart, he has been incapacitated since Friday with this and missing school. They pulled them on Tuesday and he is starting to do better, but is still having to take vicodin to deal with the pain. The vicodin makes him loopy, so it has been up to me to drive everybody everywhere. It wasn’t too bad until my blood pressure bottomed out yesterday and I got lightheaded. Dysautonomia is such a bitch…I’m stressed so my bp should elevate not crash..and my heart rate speeds up of course. I am glad my husband is feeling better and yes it is just as much a selfish reason as a caring one. I don’t know how single moms do it! It would be hard even for a healthy person. I’m struggling to keep up with the housework and my writing. Just the act of getting the kids breakfast and to school has me worn out and it is barely past 9a.m.! LoL I have to go out and do some shopping…oldest stepdaughters 13th bday and little Easter gifts…I think I am going to get my hair chopped off as a treat to myself while I am out. I love shorthair, and I have a similar face shape to Ginnifer Goodwin…so here goes nothing!

I got aggravated at my husband’s ex tonight. He mentioned my problem to her and she asked him if I was going to deteriorate and die young and basically that she thought that was too much for the kids to deal with. (This was a phone convo) he explained to her that it did cause a lot of pain and hampered my mobility, but wasn’t going to kill me.
I am so annoyed though, a few months ago she was worried that the kids were acting entitled, but heaven forbid they learn empathy by living with somebody that has a disability…it is too hard! She is sooo full of poo and I shouldn’t let it bother me, but really, she thinks that they shouldn’t be around me because I have a genetic problem and it might make THEM sad. I never heard of a parent worrying that a kid might care about someone and be sad for them. Shouldn’t we worry if they don’t care instead?

I’ve gotten a job selling articles on the internet. Pretty sweet in that I can do everything at home. I haven’t been able to face how hard it is to get out and go to work. I still have my job at the vet clinic, but it is so difficult to get there sometimes. Between the latest pain flare and being sick with some kind of mutant cold/sinus bug, I haven’t made it in over a week. The articles have been a great pick-me-up because I feel like less of a drain on our resources since I am bringing in more cash. The frustrating thing is the pain is such a struggle and sitting up causes my POTs to rear its head. I felt pretty silly when after a week of weird dizzy spells I finally figured out it was just the act of sitting up instead of reclining that was triggering my spells. Why is it so frustrating? By now I should understand that my body doesn’t work properly, but I still feel like I should be able to do more…I mean really it shouldn’t be difficult to sit up and type. I try to pace myself and get up and move, but crud when sometimes it sets in within 5 minutes what do I do? Bah, it doesn’t matter in the greater scheme of things because I meet my deadlines and my articles typically do not need revisions. I just would like to feel like my “old” normal…I can’t let go of it. Hell, I would just like to get back half of what I used to be…I know it won’t happen.
I’m lucky though. People in my life get it. They don’t doubt me and are the ones trying to get me to relax and slow down. The other day my mother-in-law was over because we were having a mini bday for my youngest stepdaughter. I was limping around getting things organized, shepherding the dogs in/out of the house, and keeping things to a low roar. She was staring at me with a little smile on her face and suddenly blurted out, “Do you know how exceptional you are?” I kind of just stopped and stuttered then hugged her. It had been such a hard day and I was trying to hide just how bad the pain was because I had forgotten my meds (I couldn’t take them anyway because they would have knocked me out) It meant so much to me to realize she understood how hard I try.

My oldest stepdaughter has issued a challenge to me and I…I accepted so the pressure is on. She wants me to finish my book and start submitting it to publishers by the end of 2013. I have to get to work!

The day after the bday party I was laying in bed recovering and the oldest came in and laid her head on my shoulder. She kind of shifted her head back and forth and then commented on how my joints sounded like gel filled with broken glass and said it didn’t sound like it would feel good. I didn’t even notice that when she was moving her head it was causing my shoulder to subluxate…my other joints hurt so much worse that I didn’t feel it until I focused on what she was doing. She then asked me the “why can’t they fix you?” question and I had to tell her that they just didn’t really understand my problem. She frowned at me and said that wasn’t fair. I grinned and said “you’re telling me.” and then changed the subject to what they were going to be doing with their mum for spring break. I felt like crap and if I had delved into the topic of my problem I would have gotten bitter or cried neither of which are things that I like to do in front of the kids.

A couple of weeks ago, I was complaining on Facebook about how threadbare my clothes were getting. I had just done my semi-quarterly closet redux and discovered I didn’t have much to get rid of and what I chose to get rid of wasn’t that great. I made some flippant comment about a clothes fairy coming and putting new stuff in my closet. A friend (I don’t see her very often) noticed it and commented on how she had a bunch of stuff she wanted to get rid of and brought me 2 big bags of clothes, shoes, belts and scarfs! I was in heaven. While we are basically the same size, our body types and taste in clothes are much different. She’s into loose and flowy tops (they look amazing on her) while I am into more tailored stuff. The loose stuff always makes me look like I am 3 sizes bigger than what I actually am. I found a bunch of stuff that worked though…thankfully she had a closet full of pencil skirts and she brought me some. HAHA the jeans were hilarious…I loved how they looked off, but my hips are so weird/wide that I just can’t wear low-rise jeans. My oldest step-daughter even found some stuff that works for her, as did her friend and there was one hoodie that worked for my youngest step-daughter. The rest is going to goodwill with some of the better pieces from my closet.
The sad thing is that it has been so long since I had hung out with anybody that wasn’t family or under 13 years old, I had forgotten how to talk. I think we had a good time though. I had wanted to buy her lunch, but in my awkwardness I think she thought I was fishing for her to buy mine! We ended up just buying our own and so I think later I will buy her some pet food for her non-profit pet pantry to thank her for the stuff.
We have this other mutual friend who has kind of dropped out of touch with us. She put up this passive-aggressive comment about feeling left out and how she must be a terrible friend because no one wants to be around her. It aggravated me for a few reasons 1. She is the one that stopped making contact. 2. She always makes these type of comments about everything and I am tired of stroking her ego (I have no energy for it) 3. It was the first time in almost 2 years that I hung out with my friend, why should I feel guilty about that? We didn’t purposefully leave her out of the loop, it was a bit of a spur of the moment type of thing and it was out there on facebook that we were getting together so she could have asked to join. I do understand that she might have felt left out…I’ve been there myself, but take it up privately with the parties involved don’t blare it across facebook so that other people can stroke your ego. I wouldn’t have put up my comment about the clothes if I had realized it was going to get the response it got (it was a bit tongue in cheek) Of course, I’m glad it did. I just never get the passive-aggressive route to get your way. My husband does it sometimes and when I point it out, he usually says “it is better than being aggressive-aggressive like you!” I tend to be blunt about most things…if you hurt my feelings or I don’t agree with you I will tell you…privately. Part of me wants to bring it up to her, but I have before and she just says “oh you are right!.” then goes back to the same pattern of behavior. I know it is a habit she needs to break and until she truly sees the pattern herself…well it will continue. I used to have so much more patience for her and people in general, but chronic pain has just stripped that away. My husband has mentioned that I am not as tolerant as I used to be towards things and I am trying to work on it. I just always feel so trapped in this body that I am losing my ability to empathize with other people.
The first friend had put up a status about having a good lunch with me and I had posted back that I would like to do it again when it was warmer and we could have a picnic lunch at a park. Her reply made me cry…she said she didn’t know how I dealt with this on a daily basis and that she just didn’t realize how bad it had gotten for me. She typed that she wished there was more recognition for collagen disorders. I think I got most upset because I think she thought for a long time that I was using my pain and illness as an excuse to not hang out…now that she knows better I think what has been an admittedly strained friendship may get back to better footing!
Also, once I can get past the aggravation at her post. I am going to try to reopen communication with my other friend. She is the type that needs lots of reassurance and encouragement and when my situation changed I wasn’t able to give her that. I had hoped that with her new job and husband, she would get new confidence or at least get a little bit tougher. I guess I also haven’t gotten over the fact that she quit talking to me for a while because she thought I would judge her harshly for her relationship decisions. I was hurt because if she had known me at all she would have known that wasn’t true. She has some serious emotional issues and I know that means I should be there even more, but I am not sure that I can be…sadly, I am at a point that I need to be the one that is being cosseted.

I’m having a terrible flare and the resultant sadness makes me want to crawl in a hole and pull the dirt in after me. It is ridiculous how well I can lie to myself. I had myself convinced that with pain control, I could be myself again. I don’t like this person…I AM not this fragile thing I have become. It is not me…but, it is. I don’t know how to reconcile myself to that fact. Every time I think I have come to terms with it, I discover that I had just fed myself new lies to hide the reality. I used to love myself and now I don’t know how to…