Friday, January 20, 2012
This has totally been a crazy week. There is so much going on and I'm getting so overwhelmed.
Last week Wed my left leg started not working well. This has happened before, but the fact that each time it gets a little worse is starting to make me worry. So instead of going and getting a massage then laying down all night to try to get it to work again, I contacted my doctor.
I was getting an echocardiogram on Thu and I couldn't walk, so I didn't go to work. Thu afternoon I saw my doctor about my leg and she didn't like it. The weakness and numbness is not 'normal' (when have I ever been considered normal?). So she set me up for an MRI of my back.
Fri afternoon I got the MRI with the idea that I'd hear by Mon morning what my doctor thought. The weekend came and went, as did Mon. Since it was a holiday (for some) I figured my doctor might have been out for the holiday so even though the test results were posted to my online chart, my doctor hadn't reviewed them so I couldn't see them.
Tue came and I didn't hear so I called the office to ask what was going on, to find my doctor wasn't in. The nurse emailed my doctor and she was going to send me to a neurologist, but after I pointed out that the 'degenerative changes and small disc bulge that's NOT pressing on the nerve' in my back could be because of the joint hypermobility I have, and it could be pressing when I stand up which is why it gets worse. She chose to see me again on Wed. Tue afternoon I also heard from a geneticist at the University of Wisconsin and I got an appointment set up for the Ehlers-Danlos testing on Feb 27th.
Wed had me up early to see my doctor. She's not sure what's going on, so she's sending me to a sports medicine orthopedist and physical therapy. She admitted she knows nothing about gastroparesis or Ehlers-Danlos, and that concerns me because the GP is ravaging my body for a year and a half while my joint hypermobility has been causing me pain and problems since I was 13 years old (that's 17 years of dislocating knees, hips, shoulders, jaw, etc). If things get worse, how will she know what to look for or what to do? I also have a really weird problem with a small part of my foot and she's thinking it's probably just eczema, but it's looking more like shingles every day. But she's not willing to call it shingles yet, so she has me putting on hydrocortizone cream. So after the doctor's office we headed to Walmart to pick up the cream and a few other things (used a motorized cart for the first time), then went home for just a few minutes. I had forgotten to take the new FMLA paperwork to the appointment so it could be extended, so back we went to drop that off for her to complete - she's keeping me out through the end of the month, then we'll re-evaluate. Then it was off to my work to talk to them, give them info about my workload so someone can help me out, and clear out some of my stuff - if they need to bring in a temp it'd be nice for them to have some space. I was already exhausted by then but I still needed a quick Target run and Cub Foods run. Target was supposed to be short so I just leaned on a cart heavily, but used another motorized cart at Cub. I was moving non-stop from 9:30 until 4:30, but since the only thing I had eaten was a rice krispie treat the stomach pain was minimal, even though the rest of my body was cussing at me and I was about to drop.
Wed it was back to the doctor's office to get the paperwork, take it to work, meet with my boss (who wasn't there on Tue), meet with HR, and spend some time on the phone. In the evening a friend's husband stopped by to get the alcohol out of my house and they surprised me by him showing up with flowers. It's so sweet of them to do that for me and I'm so grateful. The only vase I have is too thin in the neck for the bunch so I grabbed a huge souvenir glass to put them in, and set them where I can see them from pretty much anywhere in the upstairs (it's a small townhouse). I texted her to thank her and we texted a few times. This friend has been reading my blogs on here so if she reads this, THANK YOU SO MUCH! (again)
Thu (yesterday) I spent most of the day on the phone, looking at paperwork, trying to figure out my short term disability, planning, and running through all my medical stuff in my head, etc. I also got the orthopedist and physical therapy scheduled for next week. It's incredible how quickly a day goes by when you're trying to get doctors to understand how bad of shape you're in, coordinating care between multiple specialists, trying to get work to understand a little of what's going on, and trying to get arrangements done for getting to the medical care you need. I'm doing all this while I can barely eat, my left leg is barely working, and there are times that I want to cry because of the pain (painkillers don't work on me) but crying makes the pain worse so I won't cry.
Today was mostly a rest day. I'm so worn out and I have to find the strength to make the trip to Philly in a few days. Tomorrow my mother is coming back, my father and I have to pack, I have to fill out some paperwork, and finally I have to figure out what records I need to have my mother copy while I'm gone so she can take them to the geneticist when she goes to a doctor appointment at the same hospital late next week.
The entire next week will be crazy busy too. Sun fly to Philly, Mon see my GI specialist, Tue fly back, Wed orthopedist and 1st PT appointment and get the paperwork together for the geneticist, mother goes back to WI on Thu, and then who knows what else!
Anyone who thinks that being on disability is easy, dealing with health issues can be a full time job by itself!
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.
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