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It's 4am and I'm too hopped up on roids to sleep...
Hi. I don't even know how to start this post. I feel like I need to get these thoughts out of my head and I feel so clouded and confused, like I don't know what to feel or how I should be feeling. I'm angry, scared, frustrated... I feel like I've trapped myself...but I'm also feeling so emotional and grateful... maybe it's still the drugs. I'm on more drugs than Lindsay Lohan right now...
First off, thank you very much, sincerely, to those of you that have been thinking about me, sending me good vibes, praying for me and for the wonderful gifts while I was in the hospital - so many of you are so infinitely kind, generous, thoughtful and funny (the card said, Your stupid illness is robbing me of attention, so get well soon. I loved it) and it really made me feel great that so many of you were thinking of me and pulling for me to get through this. It was a nice lift as I was laying in bed, certain that my 99 year old wardmate on life support was going to outlive me.
I'm sorry, this is probably going to be long, dull and rambling. So unless you're already bored out of your skull or currently procrastinating anyway, you may want to stop reading here. It's not pretty, and it's not even funny, anyway.
Well, I'm officially diseased. I've got a rare form of Sarcoidosis, which we are loving calling the Scallywag Sarcoidies, in honour of my new pirate face and scars. All I need now is a parrot and I'm all set for a new career off the coast of Somalia.
For those of you that "know" me, my life took kind of a weird turn in late September... and it seemed right out of nowhere. I was tired all the time and feeling kind of run down, but then one night DH and I were watching TV on the couch and it suddenly felt as though someone had hit my ankles with an aluminum bat and I screamed out - it felt like they had just spontaneously broken, and there was a massive donut ring of swelling around each ankle in a perfect ring - we'd never seen anything like it. I suddenly couldn't stand up, walk or put weight on my feet, and within 2 days it got so bad that we went to the hospital - waited for 4 hours and were told that I had a kidney infection, take these pills and get out.
A couple of days later, my ankles were no different and the same happened to my wrists as I was laying in bed, I woke up screaming because it felt as though my wrists had both just broken and they had that same form of swelling - I couldn't make a fist, I couldn't grip anything... I couldn't even hold my kids. It was heartbreaking for me, and painful. I went to my GP - she gave me some painkillers and said to keep with the antibiotics, it is strange but it should go away. Within a week my eyes had swollen shut, and we started thinking that this was getting serious - back to my GP and she sent me by taxi to the Western Eye Hospital - I was checked out, my eyes were fine but there was something wrong with the tissue around my eyes, and they figured that all the swelling was related. Back to my GP and she referred me urgently to a Rheumatologist.
I didn't hear anything about getting an appointment with the Rheumatologist for another 3 days - the pain and swelling was so bad that I called their receptionist and broke down crying to this poor woman over the phone, and was urgently booked in for the next afternoon. After a couple of quick tests I was quickly diagnosed with Reactive Arthritis and within a week I was shot up with a strong dose of steroids and on immunosuppresants. Reactive to what, they didn't know, but I was to keep coming in and being monitored every 2 weeks, and I left happy. Within a couple of days the swelling had all dissappeared in my joints and eyes, and I thought I would be just fine. They told me that reactive arthritis is an auto-immune disorder that can be triggered by things like food poisoning, so, vowing to stop eating garbage I find on street corners, I left happy and relieved.
And then it got worse.
I started to feel worse. I was even more tired, going to bed at 8 with the kids completely knackered and winded. I couldn't stand long enough to make a meal in the kitchen - and I'm hardly an elaborate cook. Boiling water would have required a chair and a nap later on. My vision started to blur in both eyes and the back of my eyes and my head ached. My eyes turned from blue to green, and then the white of my right eye turned completely blood red. We called it my evil eye, and anticipated using it to see the future if my conditioned worsened. My rheumatologist didn't think that was very funny, and back to the eye hospital I went.
Things went bat shyte crazy at that point, that was a couple of Tuesdays ago. Right before, my mother and grandmother were here and I both felt pushed and pushed myself to tour them around London until one day, Sunday, I fell to the pavement and couldn't make myself get back up. I sat there for an hour, I just couldn't make myself get up. I could barely see anything but colours and shapes and I wanted to lay down and sleep - it was humiliating, and my mother dragged me over to a more decent looking place to rest and sit down in public until I could function again. Something was seriously wrong.
So back to my evil eye...
It was at this point that I started to feel like I was on an episode of House. (yes, that's probably where you've heard of Sarcoidosis before, you can stop googling it now) I went in, was checked out by an opthamologist, who got another guy, who got two more dr's... who called in the head guy, who called over a couple of students and a surgical consultant. I was there for 5 hours, and they were baffled, but visibly concerned. They more or less stopped seeing other patients for a bit, and were all fascinated by my eyes. Urgent calls were made to my GP, Rheumatologist's office and Hammersmith hospital to arrange an urgent CT scan immediately that night to assess the amount of swelling in my brain. I was given dilating drops to keep my pupils wide open to relieve pressure on my swollen nerves and steroid drops to be put into both eyes every hour. Another 2 days and I would have lost sight in both eyes, permanently.
Scared out of my fecking mind, I was put into a car and taken to Hammersmith for a CT scan - and DH met me there. My brain was swollen, but not too badly (yet), but there were odd formations in some of the glands in my face. The radiologist wanted to do a further MRI, but they were more relaxed about it than the eye hospital and said that it would be arranged within a couple of weeks. I chilled out considerably, until they called me the next day wanting me to come in NOW for an MRI. Like, we will make time for you, get down here now. That was on Friday, and after the MRI I was sent back to the eye hospital to be seen again.
On Saturday, the right side of my face from my temple to my collarbone swelled and hardened like a rock. It hurt and I started throwing up, but I was okay - we were hosting Thanksgiving dinner the next day and had loads to do, I could wait until Monday to get it checked out, but on Sunday morning DH took me back to the hospital because I couldn't take the pain and pressure in my face - I thought they would give me a couple of pills, maybe drain whatever the feck it was and send me home for some tofurkey and pumpkin cheesecake, so I didn't cancel dinner. That would have been rude, and we are far too Canadian to do something like that.
Anyway, long story short, I saw a surprising number of doctors in A&E and half an hour before everyone was due to arrive for dinner, I was admitted. DH hosted Thanksgiving dinner at our house while I was admitted to the hospital with an unknown ailment that was killing me, and that's all we knew.
I spent 10 days in the hospital, and finally came home this evening. During that time I had more than 20 dr's and a handful of professors, researchers, specialists and med students floating in and out of my room, neurologists and countless tests and violent needle stabbings... My organs were swelling, my lymph nodes were swelling and putting pressure on my lungs... on Monday the right side of my face paralyzed (hence the merciless pirate references all over facebook) and it became a race to figure this out in order to save the left side of my face.
It came down to 1 of 4 terrible things, Cancer, sarcoidosis, sjogrins or something horrible and unknown that would be named after me once I eventually died the next week. They took biopsies of my face, neck and lungs and wonderfully, on Monday afternoon after my lung biopsy "no-cancer-high-fives" were passed around. It's confirmed to be sarcoidosis, and with treatment and monitoring for the rest of my life, I'm going to be okay. Probably.
So I got to come home to my family today armed with a shopping bag stock full of steroids, bone protectors, stomach protectors, immuno suppressants, eye drops, experimental drugs, painkillers and enough laxatives to pass a a small goat through my anus with reasonable ease. I'm going to be okay.
I need to go to a specialist sarcoidosis clinic every two weeks for monitoring and for what can really only be donating blood at this point, they've taken so damn much, and I'm going to be okay.
But I don't know how to feel. I don't have cancer. I've not been dealt with something fatal (probably) and I'm not the 99 year old on life support. I should have no reason to feel sorry for myself, or frustrated. I'm going to be okay. But I'm angry for not knowing why or how this happened to me. I'm scared that it can be passed to my kids. I was told today that because of the medications I'm now on, I can't have any more kids. I don't want any more kids, so I didn't expect that to hurt as much as it did. Not having any more kids is something that should be our decision... right? That these meds are going to give me diabetes, and I have to learn to deal with that... that these clinics don't exist in the city I'm from... and they may not exist in the places I want to go. I feel trapped. I'm scared. I'm angry, and I'm also grateful. I received incredible care on the NHS and I'll forever be singing it's praises to anyone that will listen...
But I can't shake the selfish, conceited and unbearable question... why me?
Wow. If you made it this far, congratulations. Seriously. I'm golf clapping for you. I know this is rambling and kind of a downer to start off the day on the board. I just needed to get it out. It's been hard to talk about - but I feel better that I got it out.
Thank you again everyone for the kindness you've shown me during this. It's truly, truly appreciated.
Signed,
Scallywag diseased pirate Tofu
Chronically hilarious - you'll split your stitches!
I wrote a book! Bucket list CHECK!
Re: It's 4am and I'm too hopped up on roids to sleep...
Oh Tofu, First I'm happy you're home with your husband and babies. I'm happy it's not cancer or something terminal. I was really worried about you, though I haven't been posting much I've been checking the board and the FB page for updates on you.
This disease sounds scary, but at least you know what it is and the doctors know how to manage it.
Thinking of you and wishing you a healthy recovery.
Glad to see you're back!
2012 Reading Challenge
Now Nesting from Chicago, IL My nail blog:
Just reading that, thinking of the fear you and your DH must have been experiencing, I am so relieved you are ok. I was reading the brief updates but this whole explanation is just so horrible.
As for the 'why me?' don't stop yourself from asking that. It's a question that, as you know, has no answer but is totally normal to ask. It's great that you have enough perspective to say 'ok, it's not cancer, I am not dying, am not the 99 year old' but as with anything, it's all relative. What you are dealing with is scary and painful and on-going and very real. You don't have to be dying to be warranted a small measure of pity for yourself! From what I know of you, you won't dwell in it long. But when you feel that way, just feel it. Just let it be what it is and don't chastize yourself for your emotions...natural, normal, scary emotions.
Again, glad you are home with your family...try to rest!
P.S. I was also just thinking how relieved I am that if you ever repatriate you are Canadian and not American because you'll still be able to get the treatment you need without becoming completely and utterly bankrupt over it!
My Blog
OMG! WOW! I am so sorry to hear about all of this, it is so understandable to be feeling this way, hopefully once you have got your head around this ordeal a bit more it will feel a bit better. Be gentle with yourself, you may not have got the worst news but it is still a big deal to you, your family and your lifestyle.
Hugs.
Oh, Tofu, my heart aches for you and your family. I know there is now a name for it, which can help, but that won't make some of the anger and guilt and frustration go away.
You might consider seeing someone for a few sessions just to get to grips with it. And don't minimize those feelings--they are real, they are yours, and they are okay.
*hugs*
I am so glad to hear you aren't the 99 year old in the bed next to you.
I can't imagine how scary this all is, but I'll be thinking of you and your family.
And true, they may not have the clinics in the places that you might want to live, but you are very lucky that they have them in the place you do live.
Oh Tofu, you poor thing, I can't even imagine how scary that all must have been (and probably still continues to be). I agree with others, don't minimize those feelings you have...it's totally normal to be having them, and if you were all hunky dory with this diagnosis, then I'd be worried. It sucks!
That said, I'm SO glad they figured it out, that there is a treatment, and that you're on the mend. I'm sending you lots of good luck vibes and plenty of hugs for you and your family. Hang in there, you'll come out on the other side even more fabulous than you were to begin with.
I can't even imagine how scary it was to be so seriously ill and the diagnosis so uncertain. It really does sound like a House episode. I almost asked if anyone had an update yesterday because I had been thinking about you and hoping you were home from the hospital. I'm so glad to hear that you're home, diagnosed, and the disease can be kept under control so you can be there to watch Things 1&2 grow up. It's also totally normal to mourn the loss of choice about having more children, even if you thought you were done. Like you said, the decision has now been taken away from you, and that hurts.
I hope you start to feel better both physically and emotionally soon and am glad that you don't have anything to worry about in case you have to poop a goat.
I am so glad to see you on here, we've all been worried. You've had a horrible time and you are allowed to feel anything you want. Mourning the loss of potential children is entirely normal, it sucks when those decisions get taken away from you and it's surprised me constantly how overwhelming that feeling is.
I am in awe of you though, seriously... even in this post, you made me giggle. you should really, really consider writing that book - it would be amazing.
Hope that you start to feel better soon. I know you're surrounded by love and by people who want to help you, and I know you'll get through this.
(((hugs)))
BFP Apr 2012, EDD Dec 19 2012 * twin h/b at 6wk, 9wk scan * Baby A lost at 12wks, Baby B was my rainbow born at 36wks
So happy you're home with your family and that it isn't cancer. You've been in my thoughts.
I agree with what everyone else has said, you have every right to feel the way you do. This is all new and you and your family have just gone through an incredibly scary and stressful ordeal that hopefully most people will never have to endure. I agree with ooolalaooo that it may help you to talk to someone about dealing and learning to cope with your illness.
BTW, did your eyes change back to blue?
Welcome Back Tofu!!!
I hate to sound so bouncy and happy, when I know you are not, but I am glad you got a diagnosis. Sometimes that's harder than dealing with the disease.
I wish I could say something magical to make everything better for you, but I am very glad to see you back on the boards and out of the hospital.
My thoughts and prayers are with you and your family while you work your heads around what you have learned, and work out what new-for-Tofu normal is.
I can only begin to imagine the terror you have been/are facing and while it is good to know this disease can be treated, it is perfectly understandable for you to be feeling sorry for yourself a bit for having to go through everything that you have and will have to go through in treating it. It is lifechanging.
It is also perfectly understandable for you to mourn the fact that you can't have any more children. There is a difference between not having more because you don't want to, and having that choice taken away from you. You are reacting similarly to woman who have had to have a hysterectomy and didn't want more children. It's the death of that option and you are perfectly natural to grieve for it.
I just wish I could give you a real hug, but here is an internet hug. *hug* I'm so sorry you and your husband and daughters are having to go through all this. Show yourself the care and compassion that you would if a loved one were experiencing all that you have and cut yourself some slack. You hang in there Tofu.
Don't you dare beating yourself up over this!
You've just been through a really scary ordeal and both not knowing what would happen & the diagnosis you got would be a shock to anyone's system.
Be kind to yourself: it's normal for you to mourn the loss of potential children when this decision has been taken away from you. No question.
As someone else said, you're going to have to find a new normal and that's tough - but with the support of your family & friends you will find it.
In the meantime, I'm happy to hear you're home, pirate!
I am so sorry!!! I was thinking about you the last couple of days. I am glad that you are feeling better and that you have a diagnosis.
Dont feel guilty for feeling angry or sad. You just went through hell and now you have to get used to the new normal for you and your family. The great thing is that is sounds that you are surrounded by a great family and friends and an IN nest board who will cheer you up and encourage you to keep fighting.
Sending you lots of hugs and vibes and good thoughts. Wishing that 2012 will be a great and healthy year for you.
Thinking about you!
I don't know what to say, I am so sorry you had to go through all of that and yes it does sound like an episode og House.
I am glad you are back home with your girls and hope you are able to get back to what is a normal life.
Can I just say I am glad it is not cancer, but this effing sucks!!! As you process your new kind of normal life, you do have the things around you to be grateful for like your girls, your DH and your friends. But like EnidFalcor said, be real with ALL of the emotions, because adjusting to a new kind of normal is a really difficult process. Give yourself a break and lean on those around to offer support. You are going to need it.
You are in my thoughts and prayers and have been during this lovely littl hospital stay, but I will continue to think of you. Hugs to you and your family.
I'm glad you're home and back with your family, but I'm sorry you have to deal with this from now on. Did the doctors say if it's chronic or a one-off?
Don't feel bad about being upset over these circumstances. It's a scary experience and it's changed your life! And if a pity party will make you feel better right now, I think every single one of us will join you. We'll even wear eye patches.
Oh Tofu, I am so sorry, but delighted that you are home with your hubby and girls. I have been thinking of you guys and I am so sorry that you had to go through all of that. I am so glad that they were able to catch it in time!
You are completely permitted, allowed, and expected to feel every potential emotion possible after going through that ordeal. All of your feelings are reasonable and very very sane.
I completely agree with rpic's we'll all wear eye patches at the next GTG.
Oh Tofu! I'm so glad you're back, cancer free, and your sense of humor is still intact.
I'm not going to lie, that sounds like one of the worst experiences ever. "Why me?" is right. You've been put through the wringer (or however the eff you spell it) and back. As someone who has asked that question myself, I found the answer to be, "Because I'm strong enough to deal with this, turn it into something positive, and move on with my life despite the impediments I may now face as a result"...or some crap like that. It doesn't make it any better, but at least you might fool yourself for a bit.
You are a strong woman who can handle anything and I'm not surprised you've gotten through this as well as you have. Still sucks big pirate balls though. You and your family are in my thoughts and prayers. Hang in there, matey!
Tofu, I am so glad to hear from you, and I am thrilled that you are finally home with your family, with a diagnosis, and hopefully on the path back to a normal life.
I echo everyone's sentiments about being okay to feel the feelings you are! You're allowed to ask why me - no matter what it is. Definitely do not push those feelings away, and find someone (therapist, support group, etc) to talk to about it, so you don't feel alone in your questioning. Ditto MintChocChip, I know you're strong and can handle this.
Know that we're all thinking of you, and are here if you need anything!!
Dave & Jennifer 10.18.08
My Doha Adventures
I'm so sorry. I'm glad it's not cancer, but I'm sorry you will have all of this ongoing. I'm glad to hear you are home with your girls and you seem to have the right attitude. You definitely deserve to have a pity party and I'm sure it will be a continual adjustment and I'm here to listen as you continue to move on from this point. We're all here for you and I'm thinking of you.
Hug and kiss those two beautiful girls of yours and your sweet hubby. Let me know if there is anything DH or I can do to help.
Our darling diseased half-pirate Tofu, we missed you, we sent you healing vibes, we worried about you. I can't imagine how scared you were (are) and how horrible you feel. I can only pray things get relatively normal for you once again (and quickly please). I am so sorry you had to suffer so much and my heart breaks for you for the amount of pain you went through.
Know we love you dearly....dearly I say! And you will always be the #1 captain for our scallywag crew.
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What a horrible ordeal! I'm really sorry for the pain, stress, and general craziness of this illness!
Hope that you and your family will be able to rest and relax a bit over the holidays.
I'm not a doctor and I'm not even qualified to play on on tv, but a friend of mine developed sarcoidosis when we were around mid/late 20s. Her symptoms weren't nearly as severe, but it was not good. Her doc modified her diet a bit and put her on meds for a few years. However, the very happy ending, it (eventually) "went away" (probably 'dormant is a better word) by her early/mid 30s!
The doc said in about 30% of the cases it goes away as suddenly as it appeared. Not sure if that's the best medical skinny-- hell, House, is probably a more authoritative source, but I do hope yours goes away/responds as well to treatment.
'
You know that DH and I aren't religious, but we've been saying a prayer for you every night. As I said before, you don't deserve this disease, but now you've got a treatment plan. You will be okay. Be very thankful that you're not that 99 year old stuck in the bed. You still get to see your girls grow up, get married and have babies of their own. It may be hard now, but count your blessings dear. You know where I am and you have my phone number if you ever need to call and vent/cry/laugh/whatever. I'm here for you darling. *hugs*
Tofu, I had only seen a message here and there but didn't realise how ill you were or how long you were in the hospital for! Even though I think I missed most of it somehow, I'm so glad to hear you are ok!
I really hope your recovery keeps getting better and you'll feel your old self soon.