Sunday, January 15, 2012
It's a lot more than physical strength, because there's also emotional strength. Yet, what is the definition of emotional strength?
What makes a person strong? For those of us who have significant medical conditions, people call us strong for fighting those conditions. Others who have difficult life situations are called strong for fighting through it. So does that mean continuing to fight through tough times is the definition of strength? Some people fight when it is pointless - like after they've already won the argument. That's considered crazy. So if you're faced with something that others would consider un-win-able, is it crazy to keep fighting or strength of character? Or is it more crazy to give up and accept the most likely fate?
The other day I was texting one of the few friends I have left (outside of SP). Here's a few of the texts:
Her: Keep your head up hun. You're stronger than I'll ever be.
Me: It's not strong. It's do or die. Not ready to give in so I'll be a squeaky wheel until I get the right treatment. :-)
Her: It is strength! And I'm optimistic you'll find the right treatment.
Me: Thanks. Docs will be getting sick of me soon but I'm doing a lot of research for myself so I hope they hang in there with me. hehe
I really don't think of myself as strong. All I can do is keep fighting through it all until my body gives up on me. Even if/when the doctors give up, I've kept going before and I will again. Some will continue to call that strong, but I think this is what life is about - always striving to do better. We are never perfect, and neither is our lives. But if we always got everything we wanted, we'd never have the drive or motivation to do better or work harder.
I've said many times that I've always lived with so much stress in my life that if I ever went a whole day without significant stress, I'd probably implode from it. Yet this constant stress has also given me the incredible ability to withstand things that many people wouldn't be able to. My body is literally falling apart at the seams and crumbling in between. There is a chance I'll have to give up having a career. I will probably never get to have the greatest dream of my life - to be a mother - because of my health conditions and the fact that I'm 30 and no man has wanted to seriously date me for over 10 years. There is also a possibility that I will be bedridden or dead in the next few years. I can either accept all of these as fate and choose to give up, or I can put up one heck of a fight and see where this journey takes me.
Just a reminder to anyone who reads this, where your life goes is greatly dependent on where you choose to take it. It is not easy to change yourself or your life, but IT IS WORTH IT! The best things are always worth the battle to get them and what is the point of getting things the easy way and not appreciating it? Take comfort in the stress - it means you are still living your life.
Thursday, January 12, 2012
So those who read my blog yesterday, thank you. I'm still working towards figuring all that out, but I greatly appreciate the support. It's so hard to feel so out of control of my health, my job, and my life.
This morning my leg was still not working right. Since we had rain yesterday that turned to a dusting of snow, it was going to be slippery. I chose not to go to work. I had to go out for an echocardiogram though, and the results came back just a few hours later: there is no valve prolapse (mitral or tricuspid), and only a trace regurgitation in both valves. My doctor isn't concerned about it. Not saying I'm not concerned, but ruling out a prolapse means it is definitely not a current major concern.
When I got back from the echocardiogram I emailed my doctor about my leg, asking if she wants to see me or if I should go to urgent care or the ER. I got a phone call a few hours later and had to head right to the clinic for my doctor to squeeze me in. She's concerned about my leg because the numbness is not starting in a 'normal' place and doesn't follow a 'normal' path. But when have I ever been 'normal'? She ordered an MRI of my back and hips to look for something that could be pinching the nerve. If that doesn't answer it, then she may be sending me to a neurologist. She said if it gets worse before the MRI I should head right to the ER to get the MRI sooner.
In the meantime, I talked to her about my concerns about short term disability. Since I already have FMLA, she wrote a note to keep me out for a few days because I can barely walk. She's not ready to put me on short term disability yet, and is deferring until either my GI doctor determines a necessity (she doesn't know enough about my digestive problems) or until one of these tests shows something dramatic that pushes towards a harsher diagnosis. She's under the impression that most people with gastroparesis have no problem working regular jobs. Not sure I agree with that, but that's where my GI doctor comes into the mix. Since one of the two doctors is going to be signing off on the paperwork, I have to hold out until one or the other decides it's time... or until I just give up and say I'm absolutely done working (but that might mean quitting, not going on disability).
Lastly, I finally got a phone call about getting the genetic testing for Ehlers Danlos. It was one of the hospitals here in the Twin Cities (MN) but the soonest they can get me in is September. Before anyone freaks, she said they're working on getting another geneticist in the office, which will allow them to move patients up and because of my age and how badly my health is deteriorating she's putting me on a wait list to try to get me in sooner. I have to copy my relevant medical records (yet again!) and when I get the paperwork she's mailing to me I have to put it together and drop it off so they have it ahead of time. There's a chance that seeing the documents can help move me up the wait list (I can't go on TPN for my GP if there's a chance of vascular EDS), so it's better to have that in sooner rather than later. Of course there's a possibility I still won't get in until September, so I'm hoping to hear from Temple if there's anyone there who can get me in sooner and I'm still looking for a few other places to put in inquiries. If I have several appointments where they will try to get me in sooner, then when one gets me in I can cancel the rest. There's no point in suffering for so much longer if there is any chance of getting it done sooner.
Lastly, a friend is supposed to be coming to the house tomorrow to rid my house of alcohol. I need to make my house dry and stick to it. I can't have it anyways (and haven't had any alcohol in over a year) but I'm trying to send a message. Alcohol is not going to make anything better for anyone, but it is definitely making things worse. So this is my attempt to make things better (and clean out some space in my fridge!).
It actually feels good to not have to dread waking up at 6am to fight my way to work and sit there all day in horrible pain while certain people treat me like crap, just to come home and feel like I'm half dead because I wasted all my energy for something that doesn't matter all that much in the huge scheme of life. I can sleep in and spend the day relaxing, focusing on what my body needs, not what the company wants. The next few days I can pay attention to my body - sounds good to me.
Wednesday, January 11, 2012
I have a big decision to make and it's really weighing on me. As my sparkfriends know, my health has been failing and I've not been doing well. I'm struggling every day not only with my health, but trying to do a job that is quite stressful with several coworkers who make it even worse (and just a handful who try to make it easier on me). Considering what it is going to take to actually get a full and complete diagnosis is only going to get harder, I'm not sure how much longer I can keep a plastic smile on my face and continue feigning courage when the days get really hard. The pain keeps getting worse the more I fight to keep working, as is the unstoppable weight loss and fear that one of these days I will collapse face first on the hard floor at work from malnutrition or worse.
A few weeks back I made it a goal to keep working, no matter how bad I got, through our end-of-year work. That was finished early this week. Today not only did my leg refuse to admit it was attached to my body (it wouldn't move, so I could barely walk most of the day), but I also found out that some people above me were making remarks about me talking to HR about benefit issues (asking questions about disability, FMLA, etc) and wanted to penalize me over it! It is very concerning and disheartening to find out that when I've been risking my health to keep working that certain people would rather shun me than work with me. It makes me want to stop hurting myself and instead just stay home.
Tomorrow I'm having an echocardiogram done. Of course if that shows bad results, then my answer is made for me. But I keep asking myself why am I putting work ahead of my health? I can barely get any food or liquids in my body, but I'm still there being crapped on and taking it with a smile. I have tearing and burning pains in my abdomen and had to start wearing shapewear just to attempt to hold my organs in place, but I still do my job very well. My health is definitely not my fault - many people in my place would have given up long ago; and many of those who have joint hypermobility have braces on their legs, back, neck, etc by the time they're my age (30) but I've been denied things like that because my 'symptoms are impossible'. Is there any chance that I've not done enough? Is there any possibility that I'm weak and lazy?
How does someone know when they've reached their limit and have to wave the white flag? I feel like I've come to that limit and now I have to decide do I push it off and keep working, or do I cross it, throw my hands in the air and say I'm done torturing myself?
Of course, part of this is the fact that I'm terrified of what it means to stop working and go on disability (short term, then possibly long term, and perhaps permanent if needed). I can't wrap my head around what it will take to do it and make sure I don't end up screwed in the end. Is there anyone out there who can tell me that it's not 'all that scary'?
Tuesday, January 10, 2012
If you never ask for help, if you never talk about a medical condition, and if you keep everything to yourself, who will know that you need help or how to help if they want to?
Case in point, my father would rather not tell a lot of people about my health problems. Apparently before they came up here a few weeks ago, my mother was talking to someone who works at the local credit union while printing pictures at a local store. When my mother went back home this weekend she found that the credit union sent them a visa gift card (to be used anywhere) as a donation to help with a few expenses. It is such a kind gesture and we're grateful for it.
Of course, this doesn't mean that you should just walk around telling everyone everything that's wrong with you, but if someone appears interested and concerned, why not share a little of your struggles and HOW you're working to fix it. Sometimes you'll be surprised to find that others are willing to help - even if it is something as little as holding a door and lending a helping hand.
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.
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