Too many health problems - it seems unfair =(

Natalie started this discussion · 7/21/2009

A long rant session about being sick and hating it... sorry in advance, just needed to get it out. So as I said in my intro post, I have a brain tumor that has stopped growing for now but still causes migraines and seizures. Now just as I got all that under control, I started seeing bumps sprouting up on my ankles and fingers. I got bounced around from doctor, to orthopedist, to rheumatologist, to dermatologist, no one sure what it was. X-rays negative, blood tests negative, and so right now their best theory is that its some kind of auto-immune disease, which could be as serious as Lupus or as benign as a simple inflammatory condition. Today I went in and they took a biopsy of one of the lumps on my finger, and in a week I'll hopefully have some answers. So for a week I can't bend my middle finger and there's a big sore hole in it, which means no poling, most of my weight training is out or difficult and painful, and its hard to write (of course its on my right hand). It just seems like an auto-immune disease on top of the tumor and epilepsy would be majorly unfair. Isn't enough wrong with me already? The other annoying thing is that things always seem to hit me just when I'm really starting to get in shape. I'll be hit with a seizure that puts me in bed for days, I'll react badly to a medication (I've been through almost ten already!) and be out of commission while I adjust to a new one, and these joint bumps hurt when they flare up. And then there are the ignorant people who make it worse - I actually had a biology teacher tell me that exercise and eating healthy were a waste of time because the nutrients would go to the tumor and make it stronger. If I really wanted to "stick it" to the tumor I should just eat Twinkies and sit on the couch until it inevitably killed me. I dropped her class of course... A friend of mine even stopped talking to me when he found out about the tumor. He said he didn't want to get attached to me if I could "die at any minute" so he just stopped being my friend. Meh. Sorry about the rant, all my friends are gone for the summer and don't have anyone to really vent to here. Just frustrated and annoyed and typing hurts my finger but so does whatever else I do with it today 😠

18 replies

RoxyPink · 7/22/2009
My goodness Natalie! I am soooo sorry you are going through this right now! I really don't know what to say other than I will keep you in my prayers. You don't need ignorant people like that in your life! I hope you get well soon!
Fleur · 7/22/2009
Natalie, I'm sorry to hear about your health problems, it most certainly does sound unfair and miserable 🙁 I think not having a diagnosis is the worst part. It's frustrating to have doctors basically tell you they don't know what it is and therefore can't do anything. I have had similarly random and weird conditions before where my arms swelled up for no reason, etc, so I really do feel for you. The only advice I can give you is to actively research your symptoms on the internet and try to find answers for yourself. The health care system can fail you and the more ideas, possibilities, and knowledge you have going into the doctor's office, the better off you are. Push for answers, ask questions whenever something doesn't make sense, and refuse to leave without some improvement or course of action. If traditional medicine doesn't seem to help it may be a good idea to turn to alternative medicine in a while. I myself am a bit weary of it but acupuncture has done marvels for many. My thought are with you. Fleur
Trena · 7/22/2009
Oh my goodness Natalie, you poor thing! I wish there was something I could say or do to make you feel better. 🙁 Please let us know how the results go! Your Biology teacher should be taken out and beaten for what she said to you! What a retard!! And your so-called "friend" what a moron!!! He should also be taken out and beaten!! 😠
yogabeachbabe · 7/22/2009
Your Biology teacher should be taken out and beaten for what she said to you! What a retard!! And your so-called "friend" what a moron!!! He should also be taken out and beaten!! That is definitely a good dose of Irish justice! And I agree 100%. I'm sorry, Natalie, that you're facing all these issues. But you're not alone even though a lot of your friends are gone for the summer--your virtual community is at hand. Sometimes I wish it were as simple as TV and Dr House will come limping in, call all the other doctors "idiots", make the proper diagnosis and treat you until you're all better.
SissyBuns · 7/22/2009
Hi Natalie, First off I want to say that I'm sorry that you feel so miserable. I know how irritating and stressful it can be to bounce from doctor to doctor as they try to figure out what’s going on with you. I myself am a Dermatology nurse and I'm very familiar with the type of biopsy they probably did on your hand. I'm guessing it was a shave biopsy maybe? How painful is it? And did they tell you anything about managing the pain for it? We do biopsies all day long on all kinds of body parts and mostly on soldiers who are very physical by job and can't usually tolerate many restrictions so we are always finding ways to minimize recovery and speed healing. I'm interested in the bumps you speak of and if you have a picture of them I'd love to take a look and maybe even show the Dermatologist I work with. The mores eyes on the condition the better, right?! As far as your mental state, I know you're frustrated and bummed. You may not be able to grip very well but you can still work on dancing with the pole and doing moves that don't require the use of that hand, maybe work on some one handed stuff with the other hand? Try to stay optimistic. I know you're not feeling 100% but when I'm stressing about my injuries and illnesses I just think of how bad it could be. A quick story... I am a runner, or at least I was. Recently I started suffering from severe foot pain, not related to anything. They just hurt. 1 hour into my work day and my feet are throbbing. I was popping motrin like Candy to ease the pain and that wasn't even helping all that much. Eventually I started having abdominal pain and it turns out I gave myself an ulcer from all of the motrin I was taking. Now I'm on more meds for the ulcer (and the bleed it caused which gave me anemia which caused all kinds of other issues) and on top of it all...my feet still hurt! And I need my feet! I am registered to run my fav 10 mile race in october and I was all depressed about the possibility of not being able to do it. So I go to see the podiatrist who prescribes me special orthotics. I go to a major military hospital (Walter Reed Army Medical Center in Washington DC) to get my feet analyzed and have my custom orthotics made. I show up to the clinic ready with my sob story about my poor little feet and I’m seated in the waiting room with soldiers missing all kinds of arms and legs. See, the wounded warriors back from war come here for their care. When their arms are blown off in battle they come here to get prosthetic arms made. When they lose their legs in an attack they come here to get new ones. And I’m sitting here with my achy feet. Sitting there watching them come and go in their wheelchairs and crutches made me almost embarrassed to even be there. “At least I have feet to walk with” was the mindset I had when I left there. Days later in my clinic we see a patient of ours who is a very accomplished runner with skin cancer. He has registered and planned to run the same race I was doing in October. We have been talking about it for months. But his skin cancer is so bad he has had to get radiation and chemotherapy which has made him so sick he can barely even walk. He gets blisters on his feet for no reason and is broken down from a runner to a cripple. This week I start my training for that race, achy feet and all. I do it because I can and he can’t. Yes it hurts. Yes it sucks. But at least I can do it, or maybe come close to doing it. While I work my way through a run he lays in bed in pain with sores all over his body that continuously blister and bleed. I’m not at 100% top of my game…but I’m a whole lot better off than he is. When you think of your condition and your issues think of the other side of the spectrum. You are ill and do have a condition that limits you, but at least you are able to get up and walk to that pole right now. You may not be able to do what you want, but you’re able to try variations. You’re able to stand. You’re able to function. I don’t mean in any way to trivialize your condition. I only hope to bring the brighter side up and maybe give you encouragement to know that when you think it’s bad and you’re frustrated, just think of how bad it could be. Then force a smile to your face and do what you can, because there are so many others that can’t even do that. Ok, that wasn’t a short story and I’m sorry. I went off on a tangent, but hopefully you’ll learn to take your condition in stride and do what you can do, and be grateful that you can do that.
Foxy_Rei · 7/22/2009
Sissy I loved your post... very inspiring. 👍 And Natalie I really do feel bad for you... I'll be praying for you! And I definitely like Fleur's advice to do some of your own research and see what you can find. This reminds me of that show called Mystery Diagnosis or something like that... I think it's on TLC (or Discovery? hmmm...) but it's a show all about people that have strange illnesses that plague them for years and doctors can never seem to give them the right answers. But always at the conclusion of the show, there's a specialist or someone (like Dr. House, hehe) that pours over the right books and finds some odd condition that no one has hardly heard of and they can treat it. One poor girl had unbelievable stiffness in her hands and she eventually couldn't move them at all, and soon spread throughout her entire body. Turns out she had "sclera derma" (spelling?), means "hard skin" in Latin or Greek or whatever. The skin and tendons in her hands would literally just turn hard, resulting in her not being able to move her hands. With treatment and therapy, she can now move her body just fine, but her hands are stuck. She can move maybe a couple fingers and her wrists, but that's it. She's still very lucky! Ok that was a random tangent but my point kinda-sorta (I'm very articulate tonight, aren't I?) was that it may take a while, but I hope that someone somewhere has some answers for you. It does suck for now, but take what Sissy said and remember that you are still you and keep your head up high and never stop looking for answers! 🥂
Caramel_Dlite · 7/22/2009
Hi Natalie, I'm glad you've decided to write to us for support, you know that we're always here for you *hug* I've had to let go of friends who weren't supportive of me when I was going through major health issues and trust me, when they're THAT much of a stupid, selfish, unsympathetic, f**king little b***h of a friend, it hurts that they're not there, but it's much better to be without them. Just hanging on to a 'friend' like that hurts even more the longer to you think of them as a friend when they are not treating you like a friend. You've got new friends here on SV and we're here for you 24/7, so please rant all you want, we'll never stop listening and offering support. Your biology teacher is not even worth thinking about again 😈 Here's some virtual flowers I'm sending to you 🌸 🌸 🌸 Please keep us updated xoxoxo
Veena · 7/22/2009
Oh Natalie....I'm so sorry to hear about your pain and uncertainty. Sissybuns that was an amazing post, thank you for sharing. 😉 E hugs to both of you. We are all here for you Natalie, and I'm sure that everyone who reads this thread will send healing thoughts and energy your way! Have you thought about trying alternative medicine? Mediation can do wonders for the mind and body, there are lots of books out there for both alternative healing and mediation. Even if these things don't have an effect on the illness it can surely help the mind. I couldn't hurt to try. One more thing I don't know you, but I want to remind you.....Never think you deserve this or that you have done something wrong.....shitty things happen and usually to great people. We are here for you. *Hugz substitute*. 🥂
FreeTheSun · 7/22/2009
Natalie, I'm sorry you're having to deal with all that. But obviously you are a very strong person for being able to and not just giving up. Your ex-biology teacher is a douche and so is your ex-"friend'. Anyone could die at any moment. It's the cost of living. What a copout excuse for basically saying "I'm too self-centered to want to have to consider supporting you in anything that might be remotely difficult because that would take away from me." Douchebags, the lot of them. You're much better off without either of them in your life.
pole-twista · 7/22/2009
I am so sorry to hear you are struggling with health issues. i can relate to the being bounced around from doc to doc while waiting to figure out whats wrong and how unbeliveably frustrating it can be. i had a rash all over my body (except thankfully my face) 3x in 7 months and each time has taken over a month to heal. went from doc, to derm, to clinic, to ER and was FINally told i had porosis due to untreated strep infection. i took pills, used creams, and for the first time in my life went to a tanning bed bc was told it would help shut down my immune system (bc it went into overdrive fighting the strep infection) even though i also went in to have a mole biopsied (my dad had skin cancer and my mole has changed alot lately..never got it done bc didnt have h. insurance at the time..still waiting .. 🙁 ) i STILL have the rash basically everywhere although much much better that the first month or 2 ( started this last time end of april) my father also. he busted his ass all his life working 2 hard labor jobs and finally at 63 retired thinking for the first time in his life he was going to enjoy life ( he had it very very hard growing up and throughout his adult life ) only to come down with a myrid of serious health issues. ( he was just about blind for awhile..and lives alone on 3rd floor.. skin cancer, glaucoma, lymphoma, deep vein thumbrosis (blood clot that can travel from leg to lung and kill you almost instanly) ect. it really breaks my heart that he never got to travel or have fun and now his health had declined so much. i didnt want to try and make this about my or my fam, just wanted to let you know your not alone, we are all here to give you love and support, you don't need heartless people as friends (esp when you have such amazing, big hearted people right here) and i am personally here anytime if you want to /need to vent or talk. if you want my email address just send me a request through the site. hope your being strong as you can be and when my mom goes to a gospel fest at the beach sat. i will have her pray for you and ask the others to do the same. ( it has been proven scientifically people who are prayed for, even if they don't know they are being prayed for heal faster, and regain health more quickly than those who do not. can't remember where read that, but wish i could 🤔 ) HUGS!!!! 🌸 ☀️ 🌸
Natalie · 7/22/2009
Thank you so much everyone, all of your stories and well wishes do make me feel supported and less alone. I was hoping a couple of people might read this, but I didn't expect so many people to give me such kind responses! This is really an amazing community, and I'm grateful to all of you 🙂 As for alternative medicine, I have tried electro-acupuncture (they send pulses through the needles) for a severe back injury I had a year ago. I limped in to their office barely able to stand straight, and when I left after half an hour I was walking normally and had no pain recurrence for the next two days, it was amazing! I also find that yoga lessens my seizures - the doctor told me that stress can trigger them so yoga basically keeps me at lower risk. This will be really important if I ever decide to have children, because seizure medications more than double the risk of birth defects; I would have to go off them completely and rely on alternative methods of reducing/preventing my seizures. But that's a long time away, and I'm not going to worry about it until I have to. On the bright side, my finger is healing from the biopsy faster than expected. Today I can bend it a little and it hurts a lot less than yesterday. Every little good point helps, even if its a tiny bend of the finger haha. ☀️
Veena · 7/23/2009
OH thats great news Natalie 🥂
Caramel_Dlite · 7/24/2009
Woohoo for tiny bend in the finger!!! 🥂
Sparklie · 8/2/2009
I have to agree with alternative treatments because western medicine is for fixing the mildly sick, by studying dead bodies, and they are still practicing. I despise western medicine with a passion, and choose to practice eastern "medicine" which treats the living with regeneration. It is possible to make the brain tumor go away completely without risky surgeries and what not. I hate to advertise in anyway here, but look into Sun Rider foods. It is 5,000 years of research of food and the human body based on the principle of regeneration and balance. I, personally, have been on SR for 5 years and after my knee and a car accident I was told I wouldn't be able to dance again (run hurdles, or any real physical actives), and I have rebuild a lot of soft tissue, bone, tendon, and ligaments that were damaged. It may be worth a try combined with what you are already doing. I'm glad you are doing well, and I hope to see you get better.
Natalie · 8/3/2009
My biopsy came back! It's a benign condition called Granuloma Annulare. Bascially its chronic and these bumps and other such lesions will just keep happening, but they won't really hurt me. I can take a supplement (Niacinamide) to help reduce the occurrence, and if one of the bumps gets unsightly or painful they can remove it with a cortisone injection. So that's a relief, nothing terrible, just a little annoying. I can do that 🙂
Poledancefan · 8/3/2009
I'm glad the situation was not as serious as you thought! Fleur gave you solid advice, I think...take your time and do your research so that you arrive at the doctor with a good background of information. I am open minded about SOME of the alternative treatments. I have known situations in which accupuncture has helped with pain. And I think seeing a nutrtionist is neither east nor west...just a good part of a sensible strategy for staying healthy. I won't really take a position on the traditional versus modern medicine debate...though I'm personally very much science oriented (married to a biologist who has done dissections!), I think everyone has to make this very personal decision based upon an informed analysis of their own situation. But, in all fairness, I think scientific medicine has a lot to offer. One of the problems, I think, is that western medicine has lost much of the "tender loving care" aspect of treating the patient. I think if we could somehow get that back, we'd have less of an argument about traditional versus western medicine..and doctors could spend more time taking care of the "whole" patient... Well, best of luck to you.... hope you will make a full recovery. Now...get back on that pole and practice, LOL! Joel
jellycat1 · 8/4/2009
Personally I think that "friend" wasn't. And the teacher. I would so ask for a refund if you paid for that class. One thing I always tell people is, If you're not happy with your docs, or you feel like you're not getting anywhere, get a second (Or third or fourth) opinion. It took me seven docs to figure out what was wrong with me. (I have Ehlers-Danlos, not going to go into it. If anyone's curious http://www.ednf.org) It took over a year and terrified my mom, but once I knew what was wrong I could manage it. Remember you (and possibly your loved ones) are the only advocate for your health. Fight for it. The other thing I tell people is, don't let it get you down. for two reasons, if you let your health take over, then it wins. (My personal mindset.) And a lot of diseases/illnesses are sensitive to mood and stress level. When your mood is bad and depression is high that's when they flare. Not that I don't have my share of the doldrums, but I try to keep it at a minimum. I vent but try not to dewll on it. (Not easy I know.) Usually my EDS reminds me before it gets too bad. I'm pulling for you, good luck and I hope things keep looking up for you!!
Dayanara · 8/14/2009
a little late on this thread, but just wanted to send some good vibes, you will be in my thoughts and prayers, Natalie, your determination is very inspiring, and those people...well, you didn't need them in your life anyways. HUGS