Tuesday, January 31, 2012
...to find yet another link showing I have a connective tissue disorder. Looks like we found the problem with my foot: www.epodiatry.com/chilblains.htm If you read the last star carefully, it says:
* a very rare occasions the chilblains may be a symptom of rare medical problems (eg connective tissue disease or a bone marrow disorder)
Does anyone else think that part of the cause could be my joint hypermobility (which is possibly Ehlers-Danlos) mixed with the problems of my autonomic nervous system never knowing when to sweat and when to shiver and the cold but wet climate of MN? hmm Have to wonder why none of the other doctors thought of this. At least I have a viable answer (as opposed to eczema randomly occurring between my toes psh) now and ideas of how to stop it from happening. Also, I asked her about a couple other little things that I've had forever and those little things (none of which are a big deal) have more to treat them than the problem with my foot. Afterwards she had swabs taken on my foot to test for bacteria and yeast (checking for infection) and had blood drawn. That's 9 tubes drawn in just over a week, and I'm feeling extra lightheaded and weak. I'm quite sure I'm quite dehydrated so I'm planning a trip to the ER soon for some IV fluids. I was going to go tonight, but if the paperwork from my GI doctor's office isn't turned in tomorrow, I'll be going in and asking to be admitted to the hospital. The next paragraph explains more.
So here's the bad news: my GI doctor's office in Philly lost my FMLA and short term disability paperwork! I've called over and over again and the doctor's assistant refused to even talk to me about it - going so far as to put me on hold for over 10 minutes before I had to hang up because I had to go into an appointment. Finally I called the office manager and left him a voicemail about how important this paperwork is (without it I have to go to work or get them to check me into the hospital and ask a doctor in there to fill out the paperwork). He got involved and a few hours later I got a call from the woman who was dodging me who said she couldn't find the paperwork and asked me to fax new forms ASAP. So I called the STD company and asked them to re-fax the continuation paperwork then gathered the FMLA paperwork and booked it to the grocery store to fax the documents to her while calling to let her know it was on the way. I hope she does it right away so it can be in to work in the morning. Seriously, for as great as my GI doctor and most of his staff is, the person working right under him needs to realize that patients are people and customers, not play toys and vermin.
I've not been able to do my PT because I'm too exhausted and just 45 minutes of doing simple movements in the PT office wore me out for 48 hours. That's not normal! So I'm not sure about continuing it at this time. Plus with me being unable to put any pressure on the front half of my foot right now (due to the horrible pain) it seems like it's just too soon.
Friday, January 27, 2012
Today is one of those days where I feel like I'm fighting the battle against my body all by myself. So many people are being negative saying "you can't get that treatment", "you think it's hard getting short term disability, try getting social security disability, because you won't", and "your insurance will never cover that testing" plus more. Why does everyone feel the need to tell me that I can't have what I MUST HAVE to live a productive life? WHY AM I THE ONLY ONE TRYING TO BE POSITIVE ABOUT THIS?!?!
I have 2 doctors that can extend my short term disability past 1/31. Neither one is stepping up and either extending it or saying they won't. My GI doctor said he would, but he won't turn in the paperwork. My primary doctor is the one who started it, but she's balking at continuing it, even though it's not getting better enough for me to go back to work. Just 45 minutes of simple physical therapy is wearing my leg out to where I have a hard time walking again. Imagine how impossible it will be for me to work 8 1/2 hours between sitting, standing, and walking! I have horrible sores on my toes on the same leg and they keep getting worse - nothing is helping it so now I'm going to see a dermatologist, yet apparently having serious pain in my foot isn't enough to warrant keeping me off my feet. My gastroparesis is not responding well to treatment, but my GI doctor isn't in a hurry to fill out the paperwork and my primary doesn't think that being unable to eat enough calories to keep my body from eating its own mass warrants keeping me out of a high stress job. She believes most people with gastroparesis live perfectly normal lives with just a small change in diet - which my GI specialist scoffed at.
Work wanted to know TODAY whether I'll be back on 2/1 or not, but I can't get anyone to answer! The boss can't understand what's going on, so they don't understand how bad this really is. I'm fighting with every bit of me to try to make my body work the way it should, but to get the doctors to help me, to get work to put up with this, to get my family to understand and stop dragging me down with the negativity, and to make my own brain stop telling me to give up because the fight is no longer worth it. But I've promised several people I will KEEP FIGHTING as long as I can possibly do so. I'm trying, I'm really trying!
I'm so desperate for a helping hand to guide me through this hell that is the medical field. I'm desperate to have anyone honestly tell me that this can somehow get better and then actually step up and help make it better. I'm desperate to have those around me that I absolutely must count on right now to stop telling me NO and start telling me THIS IS POSSIBLE.
I'm glad to know I have the weekend starting so I can attempt to relax a little... even though I will probably be dragged down all weekend knowing how horrible things are going to be next week if it continues the way today has been.
Edit: Just got an email from my primary doctor and she said maybe I can go to a neurologist but not until after the dermatologist appointment. Yet she's completely deferring all short term disability to my GI doctor. Which means if he doesn't turn in my paperwork first thing Monday then I have to be back to work on Wednesday. I have a feeling I will be cancelling all the appointments I've made past Tuesday because I will have to go back to work or go to the ER. I'm ready for these doctors to stop causing panic and terror in me!
Wednesday, January 25, 2012
Not trying to start a political debate, but I thought I'd share this link because I can relate it in a funny way to a show I'm a fan of.
I'm a fan of the Vampire Diaries, who has original vampires that are 1,000 years old. So I found that if Mikael, Klaus, Elijah, or Rebekah had earned $22,000/year for their entire life they would make as much as this candidate (and probably many others too!) does in one year. haha (Putting a funny spin on it takes away some of the sting.)
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.
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