Something's up and I don't know what it is, but I know it's something.
People like me with a chronic disease (or any disease, probably) are incredibly in-tune with our bodies, and I can tell that something's not right...I just wish I knew what it was.
My eyes are puffy. My entire body feels as though bugs are crawling all over me. The swelling in my legs is intense...much like it was at this time last year, and it doesn't go away with sleep anymore. I feel like I need one of those inversion tables in order to have any effect, but then that'd probably make me pass out, which would also equally suck. Even my pee is different. And the swelling is not only in my legs, but moving up to my abdomen and my neck. And I've lost my appetite.
I'm off the Acthar, and I'm getting thicker, and I have no idea why.
If you look any of these things up, put together, they're not so good. I have an appointment at Mayo on the 15th of October, but I need to move it because I have a meeting for work that I can't miss, so no idea when I'm going to be able to get there.
So that's the physical side of things....the emotional side is worse. I feel like I've given up a little...or I'm just (say it with me now) so tired of being so tired. My new job (that I love) keeps me going 100% all of the time. And when I'm not going 100%, I'm sitting in a car..a lot..watching the fluid pool around my ankles. The other day, when I was flying home from Detroit, I almost missed my connection because I had pain in my shins that was SO bad I actually nearly stopped and started crying. I physically couldn't walk any fast...forget running. And it made me FEEL sick....it made me feel incapable of doing what I want, and it made me so fucking mad that I can't describe it. I can't think. I can't remember. I almost showed up to a party a week early tonight...thankfully my neighbor gave me that look like "are you crazy"...maybe I am...maybe she's right and I've completely lost my marbles.
The physical limitations are growing, and I can't seem to stop them. I can't rest enough. I can't sleep enough. I can't do anything. I try to eat something good (or eat anything, for that matter) and mid-meal I'm so nauseous that I can't stomach another bite, yet I continue to gain weight. My shoes aren't fitting again, and neither are my clothes. I know it sounds as though I'm describing physical things again, and I guess I am, but imagine what it does to a person emotionally. To know that you're being completely betrayed by your body that should, by all odds, be completely healthy. I just had shitty odds.
I put my pilates machine upstairs so that I can at least start to use it to become more active again, as all of this "resting" is making me feel like Jabba the Hut. I can at least start trying to become a bit more flexible...it's something at least. But we need to move some stuff out of the way, and I can't move it myself.
And right now, at this exact moment, Izzy is screaming, "I WANT TO SNUGGLE WITH MY PAPPA". You think that'd be cute, wouldn't you? Now imagine that in a hateful, nasly voice, over and over and over again. Not so cute now, is it? I'm so tuned out right now to her...I feel awful. I just don't have that mental kind of fight in me right now. I'm fighting all sorts of my own demons, and believe me, I know how selfish that seems. But how can I take care of her when I can't even take care of myself. I'm trying to put on my air mask before hers, yet I feel like a complete and utter parenting failure.
I know I'm my own worst critic. No one is expecting all of these things from me, except for my husband, which hurts because even after all of this time dealing with it, he just doesn't get it. I feel like the way he looks at me is one of distaste. Like he's frustrated with my "laziness"...
Fuck, I don't know what to do, and there isn't a single person in this world that can tell me. Not that that's stopping me from asking. A guy I work with has a brother that's a nephrologist here in town, and he did a wonderful thing by setting up a call with him. The doctor was so very kind, and honest. I told him that I'm interested in learning more about a medical nephrectomy, which is essentially killing off your kidneys by medicine. I know, I know...sounds drastic doesn't it? But that's how bad I feel. I still can't understand why I'm trying to save things that make me feel so awful, and that's because the grass is always greener on the other side, isn't it? That doctor gave me some things to think about, as well as some of my other kidney friends. I don't know which way to go, or what to do, but it's time to explore all of my options, no matter how drastic they are.
Would I feel better on dialysis? Maybe. Would I be able to handle it, emotionally, if something went wrong and ultimately I was responsible. There's something to be said for letting nature run its course, but I honestly can't imagine surviving kidney failure. I don't want to wait until I'm not even mobile before I do something, but I also want to consider how my choices affect my life and that of my family. What kind of a commitment is it? How much support will I need? How will I take care of Izzy?
Soooo many things running through my head.. Luckily, I've got the NKF walk coming up where I hope to meet more people and talk about them. The walk is October 13, so you still have plenty of time to donate.
Here's a link to my page: http://donate.kidney.org/goto/jenntrunk
There's also the Nephcure Lunch and Learn in the Twin Cities on November 10th. You can go here to register if you're interested as a patient, or just someone who wants to know more. A light lunch is provided, and the event will go until about noon.
I've got lots of things to think about, and I actually could use some useful advice, if anyone has any. Maybe a personal story about their experience, or any sites/links that you could send me to for info...anything would be GREATLY appreciated! Thanks for reading :)
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Transplant / Living Donor Info for me (edited)
I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info. I&#...
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I'm lying here right now in room 6B of the specialty infusion center at the U of M, and it's not going well My first blood press...
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So, for starters, my blood type is O+, so my donor kidney will need to be O+ as well. HOWEVER....if you're blood type is NOT O+, there...
Sending love & prayers your way. I wish I could do more!
ReplyDeleteThanks Alisha!
DeleteThis is really hard. I am going to share this on my blog page so that all my readers and I can be praying that you have friends and doctors that can come along side of you and help you.
ReplyDeleteThanks Talonna.....I'm keeping you in my thoughts as well :)
DeleteGURG on several of those points, Jenn. I hate that feeling of "something is coming, but only I can feel it" because it really does feel ominous on the inside, and is genuinely impossible to share outwardly without sounding like a loon. So hard to articulate what you feel when it is physical, for sure.
ReplyDeleteI also know that nothing I say will help, so here is a joke I love:
Knock Knock
Who's There?
Interrupting Cow.
Interrupting Cow Who?
^MOOOOOOOOO^
That's the dorkiest knock knock joke ever, and I couldn't be more thankful for it :) You rock, Rob!
DeleteThis post was so real, so raw. So intuitive of the way that I feel. You know what is tough about this disease, sometimes it's an invisible disease. You have good days and bad, people forget that you are sick...sick and tired. I felt you on so many levels in this post.
ReplyDeleteHi Darling. What can i say, really? You're in shitsville. Just plain shitsville. So don't kick someone lovely when she's already down. I appreciated your raw honesty for all and sundry (a skill of which I am not so well possessed as you) but please, please, please take it easy on yourself. You are a terrific Mom and an excellent wife. You're doing the best you can with a super-shitty situation. The only people who really get it are your kidney friends. The rest of us just try the best we can, fall short though we may. So you're doing a really tough thing fairly much on your own. Never apologize for being shitty/lazy/sad/pissed off/scared/hateful/angry. None of it. You're doing an awesome job. Really. Don't believe that crap-tacular voice that tells you otherwise.
ReplyDeleteThank you.......thank you.....THANK YOU!
DeleteI NEEDED this today....sometimes I feel like I'm literally falling apart. I'm almost scared to undress nowadays, fearful of the things this disease has done to my body. I hope I can put all of this behind me one day and realize how strong it made me :)
This post is SO real to me right now! I have been going through the exact same thing in the last month. At beginning of September I started to gain water weight.. I gained 18 lbs within a couple of weeks, at the same time I also started having a 'bugs crawling all over me' sensation. I went to the walk-in (because I don't see my neph until Feb) and he ran some tests on my kidney function and liver function. Today I got the results back from my family doctor and my kidney and liver function is fine. She has no idea what is causing the 'bug crawling' sensation but said my calcium and magnesium are low and she tests my thyroid function. FSGS DOES SUCK!
ReplyDeleteJust thought I would leave another comment for you... I went to Inspire after reading your post here. I figured there most be a link between the crawly itchy skin thing and FSGS... even though my family doc hasn't connected them yet. I posted the question and got the response... have your phosphorus level checked. I went to walk-in this morning and did just that. Now waiting for results.
ReplyDeleteThanks Eva. I've got a dr appointment next Friday, so I'll hold off until then. I know my numbers have been off in the past, but I'll definitely be asking for a standing lab to have it checked more frequently. The "bugs" are starting to drive me batty!!! :)
DeleteI know exactly what you are going through. I have FSGS and often, it feels like no one really understands how tiring and emotionally stressful it can be. I was wondering... if you have had any luck with Galactose in high amounts. I've tried several medicines (prednisone, which never worked, cyclosporine, cellcept, etc) and so far, it seems to be working for me. My numbers were never as bad as yours, but I've had significant improvement from taking it and it doesn't have any side effects. The only down side is the dosage is so high, one bottle only lasts 5 days for me. Just a thought... hang in there! I know it's tough. my best. Kristen
ReplyDeleteThanks Kristen. I haven't tried galactose, actually. It was part of the FONT II clinical trial that I participated in, but I had the Humira arm of the study instead of the galactose part.
DeleteThank you so much for reading my blog and posting here. It's always helps me when people post comments so I don't feel like I'm completely losing it :)
Hi Jenn,
ReplyDeleteNot sure if you read my post a few weeks ago...I was diagnosed with fsgs tip variant in 2009 with 90% kidney function and progressed to end stage renal failure in 2 years. I did not respond to any of the regular drugs we are treated with (prednisone, cyclosporine, etc.). I am a high protein spiller, around 12-15 grams a day. I have always been a very slender gal...5'8" 120 pounds but at my worst swelling I was 165 with pitting in my legs, arms, abdomen, even my scalp and breast bone. At one point my legs started seeping and the only way they stopped was for me to prop my legs for a week and do nothing. I felt that tingling sensation all the time, especially when I went in and out of airconditioning (hot and cold changes drastically in Florida).
For me, quality of life is the most important thing. When I swell I can't do things with my kids, it makes me feel exhausted, and I hate how I look. I do not like the way the drugs make me feel, I never knew when a good day would turn horribly bad with no warning. I hate being the person always complaining about how bad I feel. Instead of asking "how are you" everyone asks "how are you feeling." I sometimes wish I can just have a few days where I don't think about this disease. I must tell you that once I dipped under 15% kidney function I was really scared, crying, not sure what was going to happen. I know a lot of people say that they stayed at 15% for a long time...I didn't. My Neph sent me to get educated about dialysis. I was devastated about this but realized through the education that a young gal like me can keep a pretty normal quality of life doing Peritoneal dialysis. FSGS patients doing dialysis are MUCH different than diabetes patients that have kidney failure secondary to diabetes. FSGS patients only have kidney failure, everything else is relatively OK. The best part is that the fluid from protein loss comes off everyday during PD (I still have some function in my kidneys so I continue to lose protein). I did not know that the abdomen is where the water retention begins (aka ascites). When it is full it starts to spread everywhere (legs first). So PD removes the fluid before it builds up. My BP is normal again (I don't take BP meds). I also perform PD at home overnight while I sleep. Yes, it has drawbacks, like a halfhour a day setting up and breaking down the machine, medical supplies in my bedroom, a tube coming out of my stomach, and its a little bit more difficult when I travel. BUT I FEEL GOOD EVERYDAY!! My weight is normal again and I like PD so much that I have decided to wait for a transplant until I know fsgs won't reoccur in the transplant kidney. So you don't need to shut down your kidneys to relieve the swelling. Just ask for a PD port to get rid of the ascites...my neph said they do this for some people.
You can read my story here for the upcoming Nephcure walk in Orlando: http://orlandoflwalk.kintera.org/faf/search/searchTeamPart.asp?ievent=1034472&lis=1&kntae1034472=C31E66FE7C6C43A08732C812370826AB&supId=0&team=5280267&cj=Y
Hey Wendi,
DeleteOf COURSE I read your post. I replied to you (hopefully it didn't go to spam) but I can't thank you enough for that post. That's what I needed. That's what's got my investigating all of this. And I just read this again, and I guess I didn't realize I could dialyze and keep the kidneys going. That's what I need right now...I gotta get rid of this swelling. I'm like you (well, I'm 5'7" and was around 130 before all of this started) but now I'm at 160 lbs and gaining, and my appetite is in the crapper.
I have an appointment with my neph next Friday. I'm not exactly sure how to go into the conversation without being shot down. Any words of advice?
BTW...I really wish you were a part of my facebook group (FSGS and Pregnancy). I think it's kinda mis-named now, but there are 65 other women with FSGS on there, and it's been a GREAT source of info for me and others. It sounds like you've been through hell and back too, and have lots to give. Thanks so much for reading my blog and reaching out. You have no idea how thankful I am :)
Hi Jenn,
ReplyDeleteI just now saw this post. I am heart broken for you that you are going through so much right now. I need to really think about what I write before I completely respond, so I will either e-mail you or facebook you after I have had time to choose my words.
Sarah