Thursday, March 08, 2012
I haven't been blogging lately because of all I've been going through. I've gotten down to 113 lbs (at 5'7", this is BAD), have been getting weaker, and I'm constantly exhausted. Even being on more and more medications to try to help with the gastroparesis symptoms and to get my stomach to work better, I just keep getting worse. After about a month of trying to convince my doctors to take another step and put me on TPN (I'm DESPERATE for nutrition) they've finally put it together. I'm getting a PICC line put in tomorrow and someone will come to my house on Monday to set up the TPN. I'm quite nervous about it, but I really need to turn this around.
I've also been "mostly" diagnosed with Ehlers Danlos III, hypermobility type. I say "mostly" because I'm waiting for an appointment to get DNA testing done to rule in or rule out Ehlers Danlos IV, vascular type (the most dangerous type). If this wasn't enough, I'm waiting for an appointment at an autonomic lab (looks like it will be one in Milwaukee) to be tested for POTS (Postural Orthostatic Tachycardia Syndrome).
The worst part about all of this is that both of my parents are now living with me and my mother is the epitome of a loose cannon. She spends so much time being angry and yelling that it has taken a horrible toll on me. My father is at his wits end with her, but he feels it is his duty to take care of her. My sister refuses to deal with her and mostly stands her because she likes being around my father. The family dynamic is such a mess. My mother's negativity just oozes out of her and makes everyone around her unsettled and distraught. As she ages and chooses to keep being unhealthy, her brain deteriorates and any little bump in her life gives her reason to verbally abuse everyone in earshot. A few weeks back we had a family therapy session and afterwards I told her how absolutely terrified I've always been of her. I told her that I've made a choice and now it is her choice as to what relationship we will have, if any. If she chooses to get help, then I will give her some leeway and allow her to be near me. If she chooses to continue as she has, then I can't have her around me because she's damaging not only my mind and my health but my recovery efforts as well. All day today she was flipping out over any little thing; I finally put my foot down and told her if she chooses to act like a child then I choose to be the parent. So I told her to take a time out or I was going to act like her and leave the house crying. When I said it a second time she finally stopped yelling at my father and me and went downstairs for her time out. Thankfully she's been quiet since. I'm the one who's serious ill and no matter how much she claims to want to help, I see that she's so desperate for attention she'll do whatever it takes to get her fix. She might choose to always play the victim, but I choose to be a strong person instead. I'm no longer going to bend to her issues. I am going to be me and if she can't handle it then she can go to her home and leave me alone.
Besides all of this, I'm no longer choosing to be afraid of asking for help. My parents have emailed the Ellen DeGeneres show to ask her to help. I'm also going to be asking on my CaringBridge site for family and friends to ask her for help. I have several sparkfriends on here that know me as well as pretty much anyone, so I'm wondering if anyone here would be willing to help. I'm hoping that with enough emails I'll be able to get her staff's attention and I can get some help I really need. Thus, here's my official ask:
If you have the wish to, please go to Ellen's website at: ellen.warnerbros.com/show/respond/?P
Please start the story with "I'm writing about Sheri in Eagan, MN." I'm hoping that by starting so many emails this way, it will link them together. You can follow it by saying "I know her on SparkPeople.com as 1stateofdenial". Hopefully this will help them find me if they see your email.
Please know that it is your choice to contact Ellen on my behalf (I won't know who does or who doesn't) and my friendship isn't dependent on helping me with this. While I hate to ask for help, I'm making a choice to ask for it because I hope I have done something to help my sparkfriends enough to warrant a short email.
Thank you to my sparkfriends who have been wonderful to me, supporting me through all my health problems. Your kind words and knowing that you are here for me helps push me through the setbacks and the dark times where it feels I'll never get better. I share your stories as proof of the successes of SparkPeople and think of you whenever I need a reminder of how important it is to keep trying. Often my sparkfriends are more like a family to me than my real family. I know I wouldn't still be fighting if it wasn't for all of you. Give yourselves a big hug and know that whenever you need me, I will do my best to be here.
Friday, February 17, 2012
A lot has been going on again, and next week will be a crazy busy week too. I didn't hear from my GI specialist for several days, so I emailed again and said I was desperate. My doctor called me a short time later and submitted 2 different nausea medications (Zofran pill and Sancuso patch) to try to help me to be able to eat again. I'm not sure if it's helping all that great, but it's worth a try. He said if I wasn't doing better by Monday to email again and he would really consider putting me on TPN. I'm eating a little better, but all it takes is one more day of massive stress and/or exhaustion from doing too much and/or any number of things and I'll be right back to ~700 cals/day (half being nothing but simple carbs) like I've been the past few days. I'm down to 114 lbs (at 5'7") and ridiculously weak. Honestly, it really sucks to not have a fully functioning digestive system!
I called for a neurology appointment, but the closest place couldn't get me in until 3/21 (and were really harsh on the phone) but one further away could get me in 3/5. I didn't want to wait until after my genetics appointment on 2/27, and I explained how bad I'm doing. She couldn't get me in earlier... until the next day (yesterday) when she called and said she was able to sneak me into a spot for today! So I had the appointment today and it's not good.
I have decreased nerve sensations down almost my entire left side (hand, arm, leg, foot, and most of my back), among other issues. I have to get an MRI of my head (for the massive headaches I've had for years), neck, and back. I'll also have an EMG done to test the nerve function in my limbs. People keep telling me the EMG will be painful... psh I kinda want the test just so I can say that it's nothing compared to the pain I deal with every day.
So here's what I've got going on through the end of the month:
Mon 20th - if I'm not eating better email GI doc about starting TPN
Tue 21st - therapy appointment w/ my therapist and taking my mother (if she will go) because my mother is crazy and she's making my life worse, not better, lately
Wed 22nd - MRIs for neurologist
Fri 24th - dermatologist for update on the chilblains
Sat/Sun 25-26th - pack and drive to WI to parent's house
Mon 27th - genetics appointment at University of WI
Tue 28th - drive back to MN
Wed 29th - EMG for neurologist and get results from MRIs
If anyone out there things being home on disability is like a long-term vacation, please re-read the above and ask yourself how you would do just that when you can barely get any nutrition and your brain isn't fully functioning.
I am a fighter. I am a survivor. I am more than I or anyone knows. Yet I am weak. I am exhausted. I wonder what's the point of fighting when there isn't much left to fight for. Yet I am here, pushing through every day like a kitty playing at being a steamroller. I am everything and nothing. All I can do is face each day and do my best to do better.
Thank you so much to all the incredible sparkfriends I have. All of you give me strength when I falter and I hope you share in the successes I have (even if there aren't enough of them). Even if I don't always tell each of you what you mean to me, your kind words, goodies, and just general support, please know that all of you have meant everything and I couldn't be who I am right now without you.
Tuesday, February 14, 2012
My health is still deteriorating and it is disheartening. I haven't heard from my GI's office and my primary doctor said she can't order TPN so if I'm feeling this bad I should be going to the ER. Both of my short term disability policies are dragging their feet. I'm so frustrated!
My primary did set up the referral so I can go to the neurologist and she approved for me to take twice as much of the nerve pain blocker at night to try to help me sleep for more than 2-4 hours at a time. She said if I need to talk to her any more about this I should make an appointment.
I spent part of the morning having my mother yelling at me, arguing about how all drug companies are completely evil and should be forced to never make any profits because all they do is kill people. Then she turned it on me when I tried to explain the realities of economics and businesses. In the last 2 years I've finally realized why I see so much 'black OR white' or 'good OR evil' in the world instead of the shades of gray - it's because that's how she is. Everyone and everything is either perfect or evil, never in between or both at once. I've been working on correcting that in myself, but when she pulls this kind of stuff it is extra hard on me. Since I was trying to explain the shades of gray to her, it made me evil in her eyes and thus I was attacking her and needed to be attacked back. Just the thing I don't need!
Then this afternoon my parents took me out to look at new couches, as the loveseat I'm all but living on was in bad shape when I bought it at a garage sale in mid 2004. I can't afford much, but President's Day sales are the best time for buying furniture, so hopefully I can get something decent for relatively cheap. While we were out, I was really exhausted so my father was helping me, but while my mother wanted to hurry she got distracted instead of trying to find someone to help us. My father and I both tried to get her to find a salesperson, but she said we 'barked' at her and started throwing a temper tantrum in the store. The rest of the time she wanted to get back at us so she kept being angry and bitter the rest of the time. Now we're home and the tension is so thick you could cut it with a pin drop. Just one word to her and she will start screaming about how we hate her and want her to die and then that we're horrible people. Is there any question why I believe she's on the road to dementia? Again, this is exactly what I don't need!
I want to ask someone to make something for me to eat (since I've barely had anything again today and any hunger should be addressed), but I don't have the energy to run out of the house when my mother starts screaming and my father is trying to take a nap. If I try to do it myself my mother will start screaming that I didn't ask her. I can't win no matter what I do.
All this after I planned a Valentine's Day outing/date for my parent's yesterday, where they got a cheap movie and dinner out together while I stayed home by myself.
It's a good thing I don't actually care about Valentine's Day (I've been single for almost 12 years, since I broke up with my last boyfriend right after I turned 19) otherwise this would be an extra bummer. Instead:
To all my wonderful sparkfriends, today is about telling people you care about them, so I hope all of you have treated yourself to a little romance and/or a little self-caring with something nice - preferably not something edible. And remember that the support you all show me means more to me than I could ever put into words. So please forgive the understatement when I say THANK YOU!
Sunday, February 12, 2012
I'm starting to consider begging for TPN. I'm feeling sicker and sicker, with more and more pain, and it's harder and harder to be the 'showrunner' (so to speak) for my health. My insurance company has a nurse line and I called to see if I can find out information about what it takes to be on TPN. She didn't have much information, but she said my primary doctor SHOULD be coordinating my care, not me. My primary doctor should be heading up the fight to get the insurance company to cover the PPI, not me. My GI specialist in Philly and my primary doctor should be having a tele-conference about how to handle my case. All of these should-s are not happening! Well this nurse said I can call another number tomorrow and work with a type of health and wellness case manager who might be able to give me some help/tips/pointers about how to approach all this.
As for TPN, she thinks a GI doctor has to be the one to order it. I don't know what to do right now because my GI specialist in Philly doesn't want to do a more drastic treatment until he knows if I have Ehlers Danlos, but I'm getting so much worse, my insurance won't cover a PPI unless I'm on tube feeding, I can barely stand a 20 minute car ride at this point but it will be about 10 hours of driving over several days to get to the genetics appointment in WI, I can't walk, stand, or sit for more than a few minutes without feeling horrendously ill, and I barely have the mental capacity to watch tv!
The last few days have been even worse, as the meds are not helping my stomach work better, the acidity in my stomach is quickly eating away my esophagus and into my mouth, the nerve pain blocker is not working well enough anymore, I have an ear infection starting (and thus have tinnitus that at times makes me deaf in one ear), and my entire body hurts so bad that I almost wish I could be in a coma just so I don't have to feel it anymore. I'm emotionally breaking and fighting to not take it out on my parents. Now that my mother is back any emotional outburst will be retaliated against and my father can't handle emotions.
I mentioned before about how I'm hoping to take a trip to GA in the fall. I'm a big fan of The Vampire Diaries and I'm hoping to take a trip down there to go on a set tour. Days like the last few make me believe I won't make it to fall, no matter how desperately I cling to the thought of it. But what makes me think I can make the trip now OR later?
There's nothing like nonstop pain, inability to eat adequate food, and nonstop fighting against people who should be helping not hurting me that makes me feel so hopeless.
Wednesday, February 08, 2012
This weekend my mother and I got a caringbridge started for me. It's nice to see some extended family and my parent's friends interested in my health. Though, to be honest, I like the support here on SP and I'll end up telling more here than I will on the caringbridge because I've found several people here that understand what's going on, while most of the people there won't understand it.
Yesterday I talked to the Genetics dept at the U of MN. They can't get me in sooner, but I got more information about what's going on. If I'm willing to pay out of pocket to go to the U of WI for the initial clinical (physical) exam and they determine that the full DNA testing is necessary, U of MN should be able to get me in to a genetics counselor much quicker - then the DNA testing would be covered by my insurance. I'll take what I can get! Just goes to show that thinking outside the box and trying to make it a win-win-win situation can get you farther than giving up because 'it will be too expensive' or 'you'll have to wait for a long time' or 'the condition is rare so you don't have it'. Plus as I told the geneticist at U of MN my signs/symptoms, she seemed to agree that the most dangerous form of Ehlers Danlos is possible.
Today I heard from my dermatologist's office. The fungal and bacterial cultures showed no growth, so neither one of those is the culprit for the sores on my foot. The blood clotting tests showed no problems, so that's good. They strongly urged me to keep my genetics appointment, which makes me think she's also considering this as a potential sign of Ehlers Danlos. They set me up for another appointment for the 24th, right before I head to WI. I'll let her have another look right before I go to the genetics appointment.
I'm still working at it, still fighting, and who knows what the next few weeks will bring into my life. But I'm trying to hope that things will be getting better. Besides, I'm hoping to start planning a trip soon: to go to Georgia in the fall. I have something to be working for and looking forward to.
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