Monday, January 09, 2012
Even when you do your best, plenty of things will continue to stand in your way to slow your progress. It is up to each of us to decide what is worth fighting for and against, and what you attempt to side step.
Today my mother went overboard again. Since she's been here again (after I went 6 months without talking to her and that only changed because my health took a swan dive) I can tell whenever she had been drinking the night before because not only are there tell-tale glasses out, but she's so angry the entire next day. Of course whoever is in front of her is the one who gets the brunt of her anger, but if you happen to say anything that she can misconstrue then you're her target. I told her to stop pushing it because I was trying not to say what I wanted to say, but that just made her push harder. So I ended up calling her an alcoholic and I do not want do deal with the alcohol in my house anymore. That led to her calling me a druggie (and just to be clear, I've never even tried drugs or hell even took a puff off a cigarette in my life). When I went downstairs to get away from her, she started screaming at my father. So I changed clothes and left the house - while she screamed at my father to stop me. When I came back an hour later she left to go back to their house in WI. I'm okay with this, as it will give me a break from her and she can try to figure out her issues. Though she is just completely missing the whole point of her being here, isn't she?
I find it funny that she keeps talking about all the medications and vitamins and natural supplements she takes to be 'healthy' and acting like she's a nutrition expert, but she's not losing any weight, she's still drinking, she's still eating way more than she should, and thinks that walking around is well enough exercise for her (as in she needs nothing but that to be fit and healthy for the rest of her life). She's been sore the past couple days so yesterday she decided to go for a long run to pick up some stuff at the store while I was at my massage... then she spent the entire day today complaining and yelling that she's in pain but she can't do anything about it because she's too busy being here helping me. SERIOUSLY?!?! I paid $10 to transfer a ~$55 massage to her so she could get one tomorrow. If she was already hurting badly, why did she do all that walking then drink last night? She claims when she feels like this she knows she's going to have to have another back surgery - then why did you push it and hurt yourself more instead of calling the doctor last week when the pain started? I just don't understand what insane form of logic she's trying to use to come up with these ideas.
So after I was feeling a little better yesterday - I was able to get just shy of 1800 calories in - and I was trying to get today to be better, the stress she chose to dump all over me definitely did not help me at all. Thus I ended up pushing in just over 1500 calories and I'm in terrible pain now.
Last night I was looking into Ehlers Danlos Syndrome a little more and found that many people also have POTS (postural orthostatic tachycardia syndrome). The few symptoms I have that don't match gastroparesis or EDS do match POTS. Many of these symptoms go back to when I was a kid and have gotten much worse in the past 2 years. The scary thing is that having all this together could mean major problems are right around the corner. I know I can't give up (I've promised this to several people) but I can't even get myself to give into the emotion and just feel the terror, loss, and sadness that I need to be able to feel before I can really start to accept how bad off I am. I'm hoping that will come once I can find a doctor who knows something about EDS and can get working on the actual diagnosis I'll finally be able to get out of limbo and move on to acceptance and figuring out what way to try to go forward.
This morning i was attempting to get my mind off my health and come up with something I can consider doing that I can look forward to and that will be a huge life-changing event for me... I would like to go on a Vampire Diaries set tour... and soon, before my health deteriorates any more. I looked into it just a bit today and I think it would be an incredible experience (even if I don't get to meet any of the actors!) so as much as part of me is saying I shouldn't 'waste' my money on this, part of me is saying I NEED to do something like this. I'd also love to go to the Supernatural set, but I think Georgia would be an easier trip than Vancouver for me. So I'm honestly considering it. If any of my sparkfriends would be interested in meeting up with me in GA for this, let's talk about it and try to set it up. They only film into April then it will start up again in late July (assuming a season 4 is happening) so the best chance of running into anyone would be going down there soon or in the fall (I can't handle high temperatures).
If you've made it through this whole blog and haven't wanted to yell at me for typing too much, thanks. I'm starting to fall asleep so I'll stop here, but there's anyone who reads this who knows anything about EDS or POTS, feel free to contact me and share some information. The waiting to figure this out while the symptoms are worsening is really awful and I can't do it much longer.
Thursday, January 05, 2012
In my last blog I said the newest results from Temple was possibly an edge piece to the puzzle that is me. Today was definitely an edge piece.
I saw a rheumatologist for the first time. Turns out I didn't have to be as defensive as I've had to be all my life with doctors - based on the records I sent him, the new patient questionnaire, and the joint hypermobility I showed him he seemed to agree that there's a decent possibility I have what I think I might have, even if possibly not exactly what I thought.
Ehlers-Danlos syndrome is a condition that mostly affects the connective tissues in the joints, causing them to be too loose. There are 6 types, each with their own symptoms and complications. A few of these types are what allow contortionists to bend the way they do. Others are more dangerous because they affect the internal organs also. There is a *possibility* that I could have a dangerous type, but there's still a chance that I have a combination of the types - and that they can correct what's wrong.
The doctor gave me a phone number of a person to contact who is apparently 'in the know' for studies on Ehlers-Danlos and for who can do the genetic testing to actually diagnose it. In the meantime, I need to get an echocardiogram to check for heart valve problems (a dangerous symptom) and get my eyes checked for specific dangerous problems.
Remember, there is a chance that this is not what I have, but there's a decent possibility that this might be the answer. There's a chance it's not as bad as it seems and the doctors can help me, but there's a chance they can't. This is still up in the air, but by having this doctor say this is a real possibility, it makes me think I might finally be getting closer to answers.
Tuesday, January 03, 2012
I got my biopsy results back from Temple today. It's been almost a month and I'm still waiting for 1 more set of results to come back.
The biopsies were taken during the endoscopy and took samples from my esophagus, stomach, and the first part of my small intestine. Without overwhelming anyone with the full medical terminology, basically there are signs of major inflammation and/or infection from one end to the other, but most of it are inactive signs (not currently inflamed or infected). This could mean many things, but it doesn't appear to be pointing to any cause in particular.
So this isn't good news, but it isn't exactly bad either. It's just another piece to the puzzle. Let's hope it's an edge piece though! hehe
Thursday is my first appointment with a rheumatologist. Let's hope they're ready for the challenge that is me!
Sunday, January 01, 2012
Wishes, wants, and resolutions - all things I suck at. I hate holidays because they almost always turn out horribly crappy. It's easier for me to treat all days as 'normal' days and avoid holiday hype. Plus lately my health is so horrible it's hard for me to consider the positive aspects of holidays.
Last night I wanted to go to bed about 8-9 pm. I ended up on a phone call from 7-9, so instead I crawled into bed about 10. I didn't want to stay up with my parents and I have had horrible dreams lately. My mother has been drinking again and it has made her lose control over her emotions again, so she kept me up Friday night by yelling at me and my father about booking the plane tickets for my follow up appointment in Philly at the end of the month. I've told her I can't handle the stress she places on me when she drinks and when she flips out. Of course, my health doesn't mean anything to her when she gets the need to drink. So Friday night I was having dreams of me in a horror movie and last night I had an even crappier dream.
I typed out a long blog about the dream and the meaning it has for me and all that, but it's too heady and strange for new years day. Let's just say the dream added to all the fears I have right now due to my failing health. So instead, I'm going to stop here and say I can only hope that things will start getting better and stop getting worse. Either way, I can't just give up, so I have to keep trying, pushing, and working to make it better.
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