“Accidentally on purpose…”

the attention just encourages her..

Month: July, 2016

i hate doing this

can i just leave this here?

 

“”Dear Friend,

Jennifer Hildenbrand is fighting for her life.

In the fall of 2015, after visiting the ER multiple times for what they thought was pneumonia, she was referred to a lung specialist. She underwent a lung biopsy and was hospitalized for three weeks until being diagnosed with interstitial lung disease.Doctors say a lung transplant is critical to her survival. This diagnosis completely changed the lives of Jennifer, her husband, Chris, and her daughter, Mary. Most of last fall was spent indoors rather than taking long walks in the crisp, cool air. Her favorite time of year turned into a nightmare season. It’s been especially hard for Jennifer to miss out on family events with her nephews and baby niece, who she couldn’t meet until she was 3 weeks old because of Jennifer’s weakened immune system. She dreams of being healthy enough to go out and walk wherever she wants to go, and she can’t wait to talk her dog, Siobhan, on a walk again. She wants to ride her bike and maybe even take up running, something she never imagined she consider doing. One thing she knows for sure is that she’ll never take the simple things for granted ever again, but right now, she needs your help.

Unfortunately, Jennifer’s hope for a new life comes at a very high price.

The average lung transplant costs approximately $785,000. And that’s only the beginning. Even with insurance, which will cover the cost of the transplant, she still faces significant expenses related to the surgery. For the rest of her life, she will need follow-up care and daily anti-rejection medications, which are as critical to her survival as the transplant itself. Because they live 90 miles from the transplant center, Chris will have to temporarily relocate to be closer to the hospital during Jennifer’s recovery period, incurring substantial expenses for travel, food and lodging.

What if your life depended on the compassion and generosity of others?

The National Foundation for Transplants (NFT) is working with volunteers and supporters to help relieve Jennifer’s growing burden of expenses. NFT has been assisting transplant patients with fundraising support for more than 30 years. Your gift of any amount will enable NFT to provide Jennifer with the financial support she desperately needs.

You can help by visiting http://patients.transplants.org/jenniferhildenbrand to make a tax-deductible donation to NFT to help with her expenses.

If you have any questions about NFT, feel free to contact the staff at 800-489-3863.

Many Thanks!””

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suspense is controlling my mind, i can’t find a way out of here

eager, nervous, excited, scared. the transplant process is moving quickly and i’m ready to get through this and breathe without oxygen again. i’m also a little bit terrified of the surgery because it is so complicated and the initial recovery is such serious business.

but i’ve got this.

so everyone says.

in other news i want to get back to caring more about my appearance. in a good way. taking better care of my skin and practicing the make up techniques that i still pretty much suck at. i have a good contouring palette and i want to make use of it. a real social life would help all of this immensely. something else i need to work on.

seriously. are people avoiding me? if they are is it my fault or is it fear of my illness? what the what people? just tell me. seriously. i’m a big girl. clearly i am a bit sensitive but i would rather know than assume the worst.

i need to sell some damn hair. for real. not only am i bit bored and not wanting to use up my hair just making my own creations to sell i also NEED to make a couple hundred bucks on the quick so i can get my last two tattoos. i’m worried i won’t be able to get them before i am listed for transplant and they are the last two important ones i have been wanting.

yes, my ink is that important to me. it is forever and i am not going to live my life as if i don’t have some kind of forever left in this world. i am making it a point to do things that involve being around a good long while.

for someone who was once passively suicidal and certain the world would be better off without me i am surprised at my motivation to live to old age. people also seem to genuinely want me around and as hard as that is to wrap my mind around it still makes me a bit warm and fuzzy inside. i feel liked. i feel loved. i feel wanted. i must be interesting in some way or something. i feel like i matter.

take a number where the blood just barely dried

so much, so much. in such a short time.

i am quite suddenly scheduled for all of my tests to be listed for transplant. yesterday i was called about the right heart cath test. i’m scheduled to go in tomorrow for it. i fit the criteria to be scheduled right away. basically i’m healthy. they don’t have to deal with other underlying conditions. i am eager to get these things done and get listed but that doesn’t mean i’m not also a little nervous about some of these tests. well this one tomorrow and the one scheduled late August. tomorrow they go into my neck to get to my heart to see how well its working. i’m only mildly nervous about how aware i will be, how much i will feel and see. the other test i am very nervous about. terrified really. it is a test to see if i have a acid reflux issues that need dealing with. i will have to have a tube down my nose and left there for 24 hrs. this is normally a deal breaker for me. i seriously freak the fuck out when i have to have anything down my nose. i have been warning drs that i will fight and run as far as my busted lungs will take me if anyone tries to put a tube down my nose. i can’t fight this though. not if i want new lungs. i wish it was just the usual 15 minute version. they say you get used to the tube once it is placed and i really hope that is true. they say its the only time they will have to go down my nose. i really, really, really hope so. it is so barbaric and traumatizing for me. the rest of the tests were scheduled for me. my email just went crazy with emails to check my U of M account. so five tests in all and then nothing else according to my big binder they gave me at class. unless there are other tests unique to my case. i could be listed as soon as September.

i feel like i won’t be waiting long once listed. maybe i’m being overly optimistic but i just have this feeling. i’m so close to getting my weight down and won’t have any trouble being off the two meds i need to stop taking by the end of August. the only reason it could take that long is because i don’t know how slowly my psych dr will ween me off my anxiety med. she has already replaced my emergency dosage. i’m hoping to go down by half twice while probably starting the new emergency med in place of it. i am sure i am well enough to get through the surgery, well i will be. i’m working very hard to get healthy. i worry i am sick enough to be high on the list. though i should be much better by the time i am listed so who knows. i just have this feeling. maybe it is just wishful thinking. i would love to be breathing on my own and healthy again in time for the holidays. i’m sure it is just wishful thinking. i would have to get the call within a month or so if listed in September, in order to be recovered and living life again in time for any holidays this year. oh how lovely it will be whenever this does happen. i am confident that i will be strong enough to get through the surgery and recover well.

this is all so much and surely all so boring. do you want to hear about all the little things i’m doing to try and flatten my stomach and get my weight down and get strong? should i go on and on about my corsetting and how well that is going? i am so unremarkable. i’m too tired at night to read and i’m not better at the piano than i was when i got the lovely thing. no one is ordering dreads so i don’t have that to occupy me. unless you have ideas about things i should be making to put up for sale in my Etsy shop. any ideas? maybe i will just google some images and steal someone else’s idea. maybe i should peruse Etsy and see what is popular.

i want to get a manicure but can’t afford it. how silly is that? a fucking manicure. what am i? some kind of trophy wife left to spend her time and husbands money trying to be pretty for all the people i don’t ever see???

oh how the summertimesadness has set in. the headaches continue but sleep comes easier. tomorrow i taper down from 35mg to 30 mg of prednisone and i’m a little bit terrified that this will be a bad taper. i’m already realizing i am not quite doing as well down to 6L as i thought. i still need to slow down.

i’m so fucking whiny. i’m lucky to be alive at all.

fix all the problems that you made up in your own head

i went through a bit of a set back this past week but i’m back to where i was for the most part. i’m recovering at an amazing rate and it is so nice really, to be getting back to a point where my life can be something more like normal.

my mind has been so overly focused on all of this transplant business. i applied for help with a fundraiser. i hate it but we will need the help and this .org exists just for this purpose. i have great friends willing to volunteer which is so wonderful. i am so very fortunate. i feel so loved and wanted. i never would have thought this unremarkable me would be worth saving.

i don’t want to jinx myself but i think i may be back to sleeping. i was real anxious last night for some reason and took my new emergency anxiety med and it worked like a charm and i think also helped me with my sleep. i woke up around 4ish but then fell back to sleep til 630ish and don’t even remember my guy kissing me goodbye. i know he did because he always does but i was OUT. i think getting better sleep will help tremendously. i did wake up with a bit of a headache like i have been but it has subsided quite a bit even without me taking anything. i’m hoping i just need to get used to sleeping on dreads again. it always takes a couple nights to adjust to that. i am thrilled to have hair again.

i’m back to making pies. i can’t actually bake them myself, well i can’t put them in the oven or be at the oven to check them but my guy is good at that and kind enough to help with it. i have been making pies for the delivery guys that bring my oxygen. well the one that has gone above and beyond to make sure i have what i need and is the most knowledgeable. he really liked the dutch apple pie i made him and i asked what else he liked and he said blueberry so i am making a couple of those tonight. one for him and one for us because it is actually healthy enough for me to eat. which is awesome because i love blueberries and have been wanting to make one. normally i’m not a fan of actually eating pie but there are certain ones i like to have at least one small piece of. is it weird that i make pies for the oxygen delivery guy? i feel like its good to keep the people happy that bring me my life saving oxygen.

i fell through the window and i found out i was still breathing

so i’m taking a sort of ‘sick day’. my breathing has declined since Friday but we think we know the cause but not the cause of the cause. does that make sense? i’m taking a med that is helping and will hopefully continue to help and get me be back where i was and improving even more.
i found the scooter/moped i want so i need to get back down to smaller tanks or preferably the POC (oxygen purse, portable o2 concentrater) laugh if you will, i probs deserve it but i just can’t handle a real bike. i’m going to be sure i can ride my bicycle very well before i actually buy a scooter and i’ve been working towards that since the start of spring, right about when i started to tank the first time.
so its a sick day for me.
i’ve set myself up on the couch with the basic things i might need and i will get my activity in by cleaning something randomly throughout the day. just little cleaning tasks like wiping down a table or dusting a room with the swiffery thing.
i may attempt getting out the ‘slow karate’ (Tai Chi) DVD that Chris got me but i gotta see how i’m breathing. no matter what i do i need to be active in some way or i will really be having a sick day. not being active makes me feel 10X worse. 
oh! despite this setback my chest xray that was done yesterday at the ER showed good news.”lungs are better expanded than previous” and the dr said my lungs sound clear. it is rare that tests show improvement. usually its no change or something is worse so this is very good news.
i’m also working on taking my synth dreads out because my hair needs a rest, its growing out too much and is starting to dread and lock up for real, i need to do a good thorough dye job to take care of new growth and places i’ve missed and i am hoping that by the time i am getting them installed again the right side that i shaved in April will be grown out enough that i can have a full head of dreads. a far better way to handle the awkward stage, for me anyway. i’m having some trouble so if you want to come visit and help a girl out, that would be awesome.
 
oh. the process to get on the transplant list is finally really getting going now. i’ve already gotten quite a few tests out of the way and will soon be meeting with the surgeon. there is a 90 minute education class then i actually talk to the surgeon and i guess they are key to deciding my fate so to speak. i’ll know more today i hope when i finally talk to the coordinator.
 
all apologies to my awesome family that was here visiting. i know i was a bit of a buzzkill and really appreciate everyone being so understanding. not to mention taking me to the ER which, as it turns out, may be what keeps me out of the hospital for this issue i keep having.
 
question.
anyone ever have a sudden issue with certain foods where they are spicy even though they shouldn’t be and never were before? like ketchup and other processed tomato based foods seem to suddenly be too spicy and i’m becoming hesitant to eat certain things. i seem fine with fresh tomatoes except for salsa, that seems to just be spicier than usual for me and i was already a wimp. i feel like it has to be a side effect of one of my meds but we just can’t make sense of it.
 

this started as a FB post but i guess i had too much to ramble about.

this shit will fuck you up

well fuck this shit.

it is definitely time to take one of those social vacations. i’m far too sensitive to handle the social drama floating around in my life and in my head. because you know, everyone hates me, i’m sure of it ((for those who don’t get that, i’m referring to my constant fear that everyone hates, fear being the keyword, i “know” not everyone actually hates me)) i never expect anyone to cater to my sensitivities and censor themselves or do anything to placate me. i just do my best to ignore it and move along. sometimes there is too much and i get this overwhelming desire to turn off my phone and put away my laptop. like in its case and up on the closet shelf. away. away. away. i even got out my real camera to take pictures.

btw, i’ll putting up the pics i got last night.i think some were pretty damn good. we’ll see how they look on the computer.

so i’m not going to be ignoring anyone, i just won’t be opening FB on my phone unless i have a lot of notifications and then i will reply to anything directed at me specifically. i’m only posting about this because i am online quite a bit usually and i don’t want anyone, certain people especially, to think i’m pissed off or something. its getting kind of ridiculous how often so many people need to do this so my new goal is to never need to again. they say it takes 21 days for something to become a habit. well ignoring my phone is something i would like to get in the habit of.

in other news the last week or so has been a mixed bag. last Monday and this past Satruday were the worst. things did get better Sunday though. family is visiting and its been fun. it always is. i’m not one of those “freak out! guests are coming!” type people. we keep the place pretty tidy even with my limitations. my guy did hire a maid service to be sure the house was thoroughly cleaned. he works a lot then comes home and works a lot on the yard and i, well i have limitations so there were things due for a cleaning. normally though, fresh linens on the guest bed is usually all i really worry about when expecting guests. my guy is bit pickier but my point is, i’m not stressing over it. which is good because i have enough imaginary issues to stress about.

i’m seeing my therapist today and not a moment too soon. the hopelessness and depression of all i can’t do is creeping into my brain far more than it should and far more than i’m finding myself able to handle. i’m really putting on that fake smile with some extra adhesive because sometimes inside i’m just a wreck. a serious wreck. i don’t find therapy overly helpful unless i have a good therapist and can go on the regular so now that i have a good one i need to start going at least once a week. i actually really do need it.

you know, it really sucks that i feel guilty for every little “luxury” i have like good health insurance, a helpful supportive wonderful husband that i often take for granted, time to do things, a car and the ability to drive it, and other things like that. i know its my fault but i feel really fucking awful when i feel the need to rant a little or i complain about something and realize i don’t really have any right to. i know that just because someone has it worse doesn’t mean my feelings are invalid, well i’m trying to remember this because that is like saying someone has it better than me so i can’t be happy. i could be a bitch at every single guilt trip just because i have to struggle just to breathe, but that is just cruel. it is no one else’s fault that i have lung disease. just like its not my fault you can’t pay your bills or your husband is a jerk or you can’t afford a car. everyone has problems right? everyone has something someone else wishes they could have right? so why am i sitting here feeling guilty because i have the means to see a therapist every week if i want to???

i seriously do have enough guilt to start my own religion. that should be my next fucking tattoo after the one i’m getting tomorrow. oh, yeah. how dare i be able to get a tattoo. i’m not actually able to. if you knew what i will have to do with my finances to make that happen you might still think i’ve got a lot of nerve enjoying such a luxury but at least you would see what i am giving up to do it.

i do feel really bad, like horribly irresponsible for how i rewarded myself for finally losing weight. ((which i am sure i have gained right back)). my guy sends me links to things he sees online that he knows i will like and therefore want. sometimes i cave and i fucking buy it. i did that twice this past weekend. one was something i have been wanting but haven’t found at a good price. the other is something i am just tired of not having. apparently other people agree because two others in addition to my husband posted it on my timeline. i’ll have to make a profile pic of me wearing it for when it comes floating around again. not that i mind. i think it is super sweet that people who know what i really like make sure i know about it. as for rewarding myself i have planned out my next three rewards. they say not to reward yourself with food, this is a nice convenient way for me to justify buying myself shit. i have these three things on my wishlist that go together and i figure if i reward myself with one at a time i will be even more motivated to keep working to lose this weight. it is stationary because i miss writing letters. its probably not a good idea to treat myself to clothes for losing weight when the idea is to fit back into the clothes i have not have more to fit this fat person i am.

oh. my busted lungs.

despite hitting a minor “fuck this prednisone taper” setback, i am still making good progress improving my lung function. i don’t know if that is what the drs would call it but needing less supplemental oxygen sounds like better lung function to me. i don’t need it all while at rest or sleeping. i wait to take it off until i am fully recovered from being up and about but after that i’m good to go. i added a couple poses to my yoga routine on the Wii Fit and can do my workout at as low as 6L. one of my goals has been to be off the high flow cannula and using the regular one. for some reason that is a big deal to me. maybe because i don’t remember needing the high flow the first time i came home from the hospital on lots of O2 so i feel like if i can get down to that then i will be back to where i was at this liter flow the first time i came home and not so much worse. i’m getting around the stores at 6L even and that is pretty awesome. i could theoretically bump down to smaller tanks for short trips out which would be really awesome because i’d rather carry a smaller tank than wheel around the big ones. even if i have to switch them out more. so i am trying the regular cannula today. so far i am doing just as well on it as i was the high flow. up and around and as little as 4L. so if i can do my workout at 6L with the regular one then i think it is safe to switch to it. i have an extra high flow that is small enough to keep in my purse just in case i need it so yeah. that is my goal for today. i’m seeing one of the transplant drs on Friday. i’m so glad i have my medically trained sister in law here to go with me for this very important appt. i’ve met this dr and she is a bit surly so i’l be anxious trying to not to annoy her and that will distract me from asking the right questions and remembering all the answers. not to mention my sis will know what to ask AND is a great in attack mode when drs and nurses aren’t doing their job. she really stood up for me when i was stuck at that awful hospital after my biopsy.

i hope i don’t get a lecture about my weight. being on “vacation” isn’t great for my diet. i’m still trying very hard to stick to it but then i eat or drink something and feel really guilty and really stupid about. i hope that bariatric surgery is not something they do for people in my situation. i only thought of this when i learned my BMI is borderline to qualify for one of those surgeries. i’m pretty sure though that they want transplant patients to be able to get their weight down and keep it down on their own. my family dr says i’ve lost 7 pounds since May so i hope the transplant team sees that as adequate progress.

hope. hope. hope.

 

i got some good photos last night that i want to check out and i need to get away from this damn life sucking machine.