ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: JulieE on February 23, 2009, 10:09:54 pm
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I have to say that I was finally feeling better (and I feel I am a positive person - always feeling blessed) but in the back of my head was a certain sense that although I had dodged a bullet with finding this tumor (actually I didn't dodge it - it was lodged in by my cerebellum good - but the Drs helped me dodge serious impairment with their skillful removal of it), the other shoe was inevitably going to drop. I have watched many posts with curiosity, and one grabbed my attention, having to do with Fibro which is an autoimmune related response affecting mostly women. I do not suffer, but autoimmune diseases run the gamut, and are not limited to women, Re: Rheumatoid Arthritis or even allergies
What I do suffer (and I share this with you cause I am weeks away from a rheumatologist apt. and the curiosity of a connection, or the hopes that someone might shed light on a similar experience is greater than any modesty) is flares of inflammation. These used to be limited to hives on my hiney, and wrist or finger or arch swelling like a sprain, but no trauma. With the discovery of the tumor, I assumed it was my body freaking out due to this abnormality. Indeed, since removal, I have had minimal events. But then recently, I started getting the hives not confined to my butt, but moving to the front of my hips, and also to my lip and jaw. My knee also became quite painful. It was easy to ignore my behind, but the Good Lord has moved it to my face, and disfigured it so that I won't ignore it anymore (not unlike the wax I thought I had in my ear was easy to ignore). My Question to you forumites is:
1) do you suffer from the psychology that something else is going to go wrong now?
2) How many of you have other health issues that are not specifically AN related?
3) Have any of you had these classified as an autoimmune illness?
4) How do you stay positive?
Bless you all who have had this life altering condition in the AN, and bless all of you who seemingly have issues piled on top. Seems unfair, and seems I may need some help from you with hints on how to cope.
All the Love and Light,
Jules
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Hi Julie,
My AN is the same size as yours and I'm due to have the old Translab in a few weeks so I was interested to read your post. I'm sorry to hear of your inflammation that you've been suffering with - doesn't sound like you're having a good time of it. I haven't got any other health issues or autoimmune issues but I can answer a couple of your questions.
Psychology of having something else go wrong: Not at all, actually the opposite. When I was growing up, for some unknown reason I always thought something big would happen around the time I was 30 (I'm 31 now). I figured (when I was 8 or so...as you do!!) that because my brother and sister had various health issues and I was completely healthy, that my body was probably storing up all the little things so I would have something big later on! mmm... not so sure in the science of that, but it made sense to me then! Anyway, I figure now that I've got this whole AN situation going on, that's it for me. I've been completely healthy up to this point, I will have my operation and then I will be completely healthy afterwards. That's just how it's going to happen. There's no other way to think for me. I think if I start up with the 'what if's' that it will start to make me crazy, or in fact, start to make me unwell - and besides that's just not the way I operate.
How to stay positive? Umm... this is probably a bit trickier - occasionally sure, I think bloody hell (is that a swear word? Apologies to the mods if it is!) this is a bit rubbish, things seem to be on hold while I get this head thing sorted, but then I think, gee I'm really lucky actually - A) I've found out about this while I'm in employment that allows me to have 6 months full sick pay... really lucky, B) I've been able to come back home and spend this time with my family, C) I've got really good surgeons about to explore my head, D) There are people all over the place with all sorts of stuff going on that doesn't even compare to this - much much worse in my opinion and so you know, this is something that I have the ability to deal with. Just keep on trucking that's it. There's always a silver lining to every cloud - you just have to find yours!
Good luck
JB.
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Hi Jules!
I thought I would respond to your post, as I have autoimmune issues. I am not sure why, but at this point I am not waiting for the other shoe to drop. I think my plate has reached capacity (at least temporarily) and it would just not be right to drop something else on me! Ha! That may be naive', but it is how I am feeling at this time. However, I did go through a period where I definitely thought about "the other shoe" dropping. I went through my immune diagnosis in a short period of years, so it left me in the shoe dropping state for a while. My family and friends would say, "What else?" and I would answer, "Who knows!" I have been diagnosed with endometriosis, interstitial cystitis, lupus, pernicious anemia, Fuchs' Dystrophy, and lastly a brain tumor. I have also had a diagnosis of psoriatic arthritis and rheumatoid arthritis, however, the lupus and last two diagnosis are most likely just one systemic arthritis. Opinions seem to differ on which one. So, I have had my feel of problems since 2000 of what I can handle for the moment!
When you see your rheumatologist, they will most likely run a large panel of blood work. It is extremely important to have panels of blood work done at the rheumatologist. One of the things they need to look for is your ANA titer. This is often a flag that you have autoimmune issues. Although, in some cases, it can still be negative, even with a disease. If your numbers are quite large, it is more definitive. My titer is usually 1:1240, with normal being 1:40 or less. I, too, have had hive issues, but only brought out by prescription drugs and the sun. When I have them, they are off the scale! Since radiation, I am still battling daily scalp and skin problems around my ears and upper neck even at almost seven months out.
I want to say I am sorry you are going through this and hope your issues will pass with time! I totally relate to the joint pain as that is a daily issue for me. At times, my joints swell. I have drug reactions off the scale, so it is not easy for me to be treated which is my main problem in dealing with the issues. If you can take medicine without drug reactions, that is a great help!
My coping mechanism is just to take things day by day and keep as active and involved as possible. I have a good support group around me and feel blessed. I don't look like anything is wrong with me, so in some way maybe that helps?? Although when I visit a doctor, maybe it hurts! I have remained positive for the most part. I have a very good friend with fibro and we commissurate together! I also know people through church who have similar issues. I will say when I had my GK and things did not turn out totally as I had hoped, it was hard. My immune system seemed to react to the radiation in an adverse way and it was not easy for me to be positive in the beginning. I had really gotten my hopes up that things would go great. I was on countless prayer lists and had tremendous support. I kept thinking everything would go so well. I was so disappointed when I had problems early on. It was hard for me to handle the new issues on top of my old issues. I had to go through a period of acceptance that I had more issues to contend with now. Whether it was right or wrong, I did not feel it was fair to have more problems. Also, I have had little luck in finding a physician to help, so it complicated matters.
On the bright side, even though I am still battling some issues, it is getting much better. I don't know if I am just over the initial shock of what can crop up post GK, or it is getting better. I think it is slowly getting better and I am able to cope better, as well. Also, I have had a very special person on this board who has helped me in such a great way through pm's (you know who you are)! It is so helpful to have someone who you can relate to on a very personal way with the same health issue(s), such as the AN or other health issues.
I wish you the very best on your visit with the rheumatologist. I hope you feel better and can get some help very soon. Please keep us posted with your condition. I don't think I answered your questions one by one, but hope I have helped in some way!
Windy
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Thank you guys for the well thought out replies!
JB - Thank you for reminding me of two things I knew earlier: First, that it could be much worse. I remember in the first ENT's office being told of the tumor and the exchange going like this: "Well is it Malignent?" "No" "Is it operable?" "Yes" "Well then what's the problem?" "Your facial nerve..." I heard the hypothetical, but it bothered me a fraction compared to the relief knowing I would survive to witness my kids continued growth. Plus the surgeon's confidence gave me confidence, and indeed, the facial nerve is doing great.
Second, your attitude that you are lucky reminded me a statement I made to my husband: 'Well, we found it at the perfect time really!" kids being old enough; tumor being large enough that we didn't have to weigh the "Surgery or CK" debate, which, in my opinion would have added another level of stress for me; and, of course, not later and thus bigger.
You are lucky to have the 6 months paid leave. The 6 weeks they tell you is - ahem - bull. Of course, with your great attitude you may be one of the lucky ones who gets back fairly quickly - but expect recovery to take longer than the suture sites healing. I am happy to hear you say this is your "thing", and that's it for you. I will pray to that end, and will look forward to the updates in which you get it behind you, and get on with a speedy recovery!
Windy!
I am sorry to hear of your diagnosisies, but am encouraged to hear you pointing to the brighter side now, and I hope you have continued improvement. You are right: It is so helpful to have someone who you can relate to on a very personal way with the same health issue(s)
, so thank you for taking the time to give me a heads up with what to expect at the at the rheumatologist's office, and sharing your positive outlook (which has surely been tested) and sharing your coping mechanisms - you have certainly helped.
Thank you both - I needed this adjustment, I think just I am feeling more vulnerable, and getting invincible back is harder than I thought. I'll just settle for a happy medium!
Jules
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Julie,
It is hard to stay positive when you have one thing after another to deal with. I would think a brain tumor would be enough for one person to deal with in a lifetime.
I have some strange ailments that no one can figure out and we're not sure if it has anything to do with the AN or not. I've had thyroid issues since my teens and that was attributed to some autoimmune thing. I have always had seasonal allergies that seem to be much worse than normal, so apparently my immune system is just a little overzealous.
A year and a half after my AN surgery, I developed a blood clot on my ovarian vein. Imagine my surprise when every doctor in the ER that day had to come in to see me because they'd never seen that before. (I do like to be unique). They ran every test possible, some of them even twice to make sure they weren't missing anything and came up with "well, we don't know - we think it's some autoimmune thing that causes your body to make clots". So, now I'm on blood thinners.
A few weeks ago, the lymph nodes and glands on my AN side swelled up so much I looked like I didn't have a neck. The doctor said the only time he's ever seen that was in patients with cat scratch fever - which would be quite difficult for me to get, since I don't have a cat, and being allergic to them in the first place, I tend to avoid them.
So, I guess there are a few of us with odd things happening to our bodies. Who knows if it has to do with the AN or if our resistance is just down due to the trauma of the surgery. I have worked in healthcare all my life and was pretty much immune to anything you could think of, but now I seem to catch everything that goes around.
I guess the best way I've found to deal with it is to deal with one thing at a time. I know the AN is gone, so I don't really have to worry about that. The thyroid has been dealt with and controlled with meds, the blood thinners are doing their thing and antibiotics cleared up my lymph node issues. So, for the moment, I don't have to worry too much about that stuff. It is frustrating when you feel like you're finally turning the corner and getting back to normal and then something else rears its ugly head.
What really puts things in perspective for me is when I have to go to the hematologist/oncologist office for my blood work - sitting in that waiting room with people who have much bigger issues than mine makes me realize how lucky I am that what I have can be easily treated and I'm able to go about my life.
Hang in there! And hold on tight to that other shoe!!
Lori
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I'm not sure doctors know what causes alopecia ariata, but that's what happened to me a year after my GK treatment. I ended up with a bald spot on the back of my head. It's now snow white hair. I think it's very suspect that I got this AFTER all the anxiety, stress and GK treatment, but there is no way to prove that it is connected one way or another. I might have gotten it anyway.
Hope things get better for you,
Sue in Vancouver USA
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I sometimes think a shoe store has been flung at me
I got fibro diagnosis maybe a month before the AN was found ...then same week as the AN diagnosis
got lupus diagnosis too... and shortly thereafter was thought to be having mild heart attacks but l
luckily it was only the Zomig I was given for migraine headaches messing with my heart...then a month
after MRI showed rapid growth of AN I had to have a hysterectomy when the blood I was losing
was too much for my body to replace ... I had so much going on that who knows what cause what ..
but I was having fibro and lupus issues several years before , when I had an MRI after an accident and
the AN wasn't there at that time ....
OK...that makes me sound like a mess and I am at time ...
I try not to not let the psychological effects of illness get me down... (not always with success) when they do I
try to work past them and get alot of help from this forum... some days I just come and read to get a little
comfort and learn what has worked for others ...the roller coaster ride I have been on since surgery has
at times almost made me want to crawl in a hole and hide ... it is hard to be positive when the one thing
you are almost sure of is that someone out there has it out for you ... ( I don't really think this ) ...I have a
genetic condition that causes joint pain and other issues ...so I should be used to medical issues ... they
have always been with me as long as I can remeber...
but life goes on and my husband kids and grandkids keep me positive ...especially my 9 and 11 year old
daughters who are either driving me insane or making me laugh and sometimes do both at once ... they
always remind me that even though things suck sometimes that I am still breathing and that is a good
thing
if I get dwelling on all the medical stuff going on I do get down and some things like tiredness and
headaches are worse ...so in that regard I thing remaining positive helps ...
I have sat here trying to type this and make sense for an hour and can't get my thoughts exactly like
I want them... I think positive thinking has positive effects on our health and negative thoughts
have negative effects on it ...other things floating about my head but giving up for the night as
brain cells just are not working right
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Well Gals,
It would seem that we are in an grab bag of symptoms - only I don't want to put my hand in- in fact, I would like to sit this one out. But there are lessons to be learned at every turn - and you guys have the gift to teach me how to accept it more gracefully.
Lori,
my immune system is just a little overzealous.
that's exactly how I have described mine! Glad you pulled through your ovarian issue. Though we are unique in our own ways (I haven't encountered a clot yet - Yeah), I did have a copperhead bite that even the cleaning guy heard about and wanted to see - so be it. He was the most down to earth: reaction - "wow"; the guy who received me called out for the "shock a trauma" unit, right in front of me! I told him I didn't need it, but he said "we'll see", but thankfully it was an anti-climatic event.
Still your comments don't go unobserved, and i love a gal who appreciates a compliment over diamonds any day!
Sue,
I can't pronounce your condition, but I had trouble with "Annunciation" earlier, so apparently it is "a" words today! Gotta say - I am looking forward to snow white: My mother has been an eviable white - but unfortunately since she was 28! I'm stuck in the middle. Still, it is suspect how you got it! Did I ever tell you i made your friends sugsr cookies from the holiday thread and they changed my view of sugar cookies for the better?
Soundy,
Hate to say that you are the poster child for diagnosis i do not want, but you are also a poster child for how to go with the flow. You are right to look to the kids to bring laughter, (and maybe headaches of their own), but you have insight that I can only get here - and I will never pass a shoe store in the same conscience again!
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This caught my eye..
In my initial search for the cause of my symptoms (right facial numbness) I had blood work that revealed an elevated ANA, rheumatoid factor and Sjorgen's syndrome titers. All pointing so some kind of undefinable autoimmune disorder. I wasn't surprised since I had uveitis (an eye inflammation) 10 years earlier that sometimes heralds autoimmune problems. But then the real cause of my numbness (the tumor) was discovered, and I have chosen to ignore the autoimmune labs. I am feeling okay...nothing hurting my quality of life so far...so I choose not to persue it right now.
But I think it is very, very curious that so many with benign tumors seem to also have an autoimmune process going on...
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My "immune" disorders started a couple of years before my AN was diagnosed. I developed small patches of psoriasis on the back of my head and under my left eye. Following this I was diagnosed with a mild case of Crohn's Disease. I had four months of constant diarrhea and what seems like fifty different tests. Finally my doctor used the pill camera which revealed the Crohn's. This was in the summer of 2006. Fall of 2006 is when my AN was diagnosed and my surgery was in April 2007. In the fall of 2007 I had a sudden onset of joint pain affecting my shoulders, elbows, wrists and knees. Even the water hitting my shoulders in the shower was painful. My rheumatologist diagnosed me with some sort of arthritis which is also connected to the Crohn's. I've been on many medications including the injectable ones (Humira & Enbrel). None of these have helped all of the pain all of the time. One day one joint hurts the the next day another joint may hurt. Right now it's my right elbow plus I fell a couple of weeks ago and have two broken ribs. Ouch.
I can't help but think the AN and all of these immune disorders are somehow connected.
Linda in WV
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I can't pronounce your condition, but I had trouble with "Annunciation" earlier, so apparently it is "a" words today! Gotta say - I am looking forward to snow white: My mother has been an eviable white - but unfortunately since she was 28! I'm stuck in the middle. Still, it is suspect how you got it! Did I ever tell you i made your friends sugar cookies from the holiday thread and they changed my view of sugar cookies for the better?
It's pronoucned al -o-peesha air-e-a-tah, I think. Well, snow white is okay, but one small patch looks kind of odd. Sometimes the hair grows back in the same, but most often the pigment just goes away so you get the snow white hair. Alopecia Totalis means that you lose ALL of your hair. And sometimes that means ALL of your hair; eyebrows, eyelashes, body hair. And often it never grows back. Yikes. I worked with a lady who had that, and one of the pharmacy's I used to go to was owned by a man who had that.
I just emailed my friend to tell her that her mother's sugar cookie recipe lives on! She will appreciate that, and I am glad you liked them.
Sue in Vancouver USA
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my lupus was classified mild SLE in type ...
along with it comes a host of things that range from cold hands ,feet ,ears and nose which come from
Raynauds syndrome and dry eyes and mouth from Sjorgen's syndrome
hair loss all over head ...not to the point of baldness but it leaves me with new hair constantly coming in and
the short hairs stick through the long to give me a constant fuzzy look... thought to fix it by cutting hair shorter
but then thinness showed... and steroids they gave to treat some things make more hair fall out
spells of Pleurisy and get fluid in my lungs ...which since I have had asthma most of my life is not good ...also
some kidney involvement and sun sensitivity ...
along with all this comes mental confusion , fatigue ,dizzy spells .... do these sound familiar to you all??? all things
that happen along with AN treatment for many people ... and even though lupus is stable and have had no bad
flares since surgery the close resemblance between lupus problems and some AN problems I think sometimes
hinder treatments for me working
someone on the lupus support forum is the one that pointed me to this place ... since surgery the after effects
of the surgery have pretty much taken over my life from a medical point of view ...
I have thought sometimes there is an auto immune connection to ANs but no real back up other than many
with ANs have some auto immune stuff going on...
but goal in life is to continue on as normally as possible and try not to get too down about stuff...
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It seems to me that all of us have similar symptoms after treatment.....regardless of what the treatment is...surgery...CK......GK. I am 4 years out and continue to have a variety of issues come and go only to return. The list is so long if I put them all down at once....it appears terrible. Balance, fatigue,dry eye & mouth,trigeminal pain. facial/dental work pain, deaf in left ear, slurring of words,spelling errors, handwriting different,cognitive issues,headaches, very emotional at times,hearing in good ear strange, tinnitus......there's more....but I think this is enough. I am 69, a widow,grandmother.....It seems like such a short time ago that I was very fit,energized,slim....full of life....an artist....traveling....playing piano....entertaining etc. Now .....nothing. sedentary for the most part (struggling with excercises) very fatigued,on a constant diet(meds...Decadron,antidepressant,slowed metabolism increased weight immensely)I have lost 45 lbs after declining meds and watching closely what I eat,awful headaches on rising,joint pain,no motivation to paint,garden,play piano,socialize, read, write....some days I cope others no. I really have a blessed life, am grateful to be alive....even in these difficult times....I have read that any trauma to the brain has it's own life....this is our "run your body" scource....mess with it and there are consequences most of which are elusive...even to our doctors...we must forge ahead with confidence....do what is possible....let go of things that aren't. I am happy to be "older" and don't have the huge responsibilties the younger ANers with jobs and families have. That seems virtually impossible to me................keep trying....life is worth the living....gotta live with the hand we're dealt somehow.Positive attitude is essential....acceptance critical........Judy
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I have learned something through this journey.... brains don't like to be played with ... the doctor said he didn't
disturb my brain just kinda moved it out of the way to work and that some of the issues such as handwriting,
changes , fatigue and cognitive problems are not surgery related...more likely due to aging ...
I don't believe it at all... my brain was disturbed by being moved out of the way... I went to sleep without many
of these issues and woke up with them ... this is not as he said normal aging process ... I did have some fatigue
along with lupus but it was ten times worse after surgery ...
I have said it and heard it said ... many doctors are great at getting ANs out or killing them with radiation
but don't know what to do with the after effects we suffer from...
try to stay positive but don't always make it ...
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My Question to you forumites is:
1) do you suffer from the psychology that something else is going to go wrong now?
2) How many of you have other health issues that are not specifically AN related?
3) Have any of you had these classified as an autoimmune illness?
4) How do you stay positive?
Bless you all who have had this life altering condition in the AN, and bless all of you who seemingly have issues piled on top. Seems unfair, and seems I may need some help from you with hints on how to cope.
All the Love and Light,
Jules
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1)Yes, I am often afraid that something else is bound to go wrong. It was worse in the beginning but it's still there.
2)No autoimmune yet, but my mother and grandmother both had lupus and my mom has rheumatoid arthritis so I figure it's just a matter of time.
3) I have other health issues but I don't think anything is related. Of course, what do I know?
4) I stay positive most of time because, although I still have annoying and sometimes painful side-effects of surgery, I am able to do almost everything I did before surgery. And I am still here, able to love my husband, son, family and friends.
Marci
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Judy ....
Although I can identify with much of what you have written, I am sad that it is continuing to drag on you. I went through this circle longer than I want to say. I am in your age group ..... and although not a widow, I, too, am a grandmother and a musician for nearly all of my life. I struggle with severe balance issues, (after having retrosigmoid surgeries on both sides) 80% hearing loss on AN side, severe tinnitus, fatigue, etc. after one year out.
Not minimizing the "realness" of your depression, here are some of the things I have done to work on pulling me out of this state:
a) started working with a vestibular therapist (go to see him every two weeks) who put me on a home regimen of very specific exercises ..... at the end of each daily session at home I have incorporated playing the piano for 15-30 minutes (initially this was an extreme struggle because I am hearing two different pitches in my ears!) Note: I never want to do the exercises but always feel better after I do!
b) resumed singing in church choir, as well as a community chorus ..... not only for the musical release, but for the inherent support from the friends in the groups
c) focused on doing little things I can for my grandchildren ..... sending them stickers I get in the mail, etc. ..... anything I can to feel like I am doing something for someone
Although life will never be back to the level it was pre-AN, I am really working on carving out a "new phase" in my life with my new limitations. I certainly hope and pray that you will be able to see through this dark curtain.
Clarice
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Hi there Marci:
1. Nope, I work on not putting negative thoughts into my head. (actually, I never think about what else, & look what happens !).
2. Yes, several, all under control.
3. no, but I do have asthma & eczema.
4. I have a new found love of life since this AN journey, & I take Prozac 20 mg po daily !
Always good thoughts, Nancy
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Hi Clarice.....I just can't give in to the thinking...."it's the aging process" No it's not...You don't just wake up "old" I am working from a list of doable things to encourage myself to stretch myself back into areas I can do. Having a painting technique workshop in my studio this week....spent Sunday cooking do ahead and freeze meals for the week (watching NASCAR,Las Vegas) it was a very creative experience for me. I called an old friend in S. California and invited her for a visit...she's wonderful and very funny,Took a drive with a friend on the "Blossom Trail" and had lunch in a small neighboring town,called 2 of my grandchildren and offered to pick them up from school today (Dad on way home from Las Vegas race) at 17 &14.....they are really fun and offered to help Nanny with some things. So there is a path before me....a good one....going to try hard to stay on it! Each day is an opportunity to "overcome" negative issues that exist and will continue to....It's up to me to make the effort for change. I am very grateful for this site and the positive responses of everyone.....it's so encouraging!
Judy
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I vote that having an An qualifies you from being exempt from all other health issues... where do I register my request? :)
It certainly doesn't seem fair. I must admit to kind of hoping that when I finally figure out what I am going to do about my An and get it done, that I would be finished with any major issues for a very long time. It really does kind of seem that an inordinate amount of people that have AN have alot of other things going on with their health. Before my AN diagnosis, I rarely got sick or even went to the doctor but since I was diagnosed in Dec 2008 for 1.5cm AN I feel like it has been one thing after another... So in some ways I am waiting for the other shoe to drop.
I went for a physical the day of my meeting with a surgeon- Primary Dr. found lumps on my thyroid sent me for further testing- found out I have Hashimoto's disease- auto immune. It can be treated with medicine. Ultrasound of thyroid found nodules and enlarged thyroid- biospsy showed benign although Doc says if thyroid continues to get enlarged will need to be removed because these biopsy aren't always conclusive.
Blood test from physical showed anemia- sent to a gastrenterologist - tested negative for celiac disease but have a profound iron deficiency. If the iron supplements don't improve levels I get to go for endoscopy & colonoscopy.
Thyroid doctor sent me to dermatologist for possible skin cancer- currently awaiting biopsy results.
Just visited the doctor today and have a wicked ear infection. Of course it is in my non AN ear so now I hear even worse. (luckily only temporary)
Friday I go for an MRI to see if the AN has grown and my claustrophobia has me more anxious than worrying about the test result.
Although all of these things have been causing me anxiety, everything so far has turned out ok and so I decided that 2009 is going to be a good year.
It certainly doesn't hurt to have 4 kids, two dogs, 1 lizard a great husband, work, a recently widowed mom with health issues and lots of commitments to keep me from having time to think about what can happen and worrying about it. I think ultimately although I worry about the shoe dropping, I try to look at what is good today.. my family is healthy and safe and I am lucky to be here sharing their lives.
Wishes of good health and peace to all! ;D
Darlene
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Darlene - I'll second that request! These medical issues should be more spread out among the population instead of a small group having to have it all!
I was healthy too - before the whole AN thing. At least I thought I was anyway! Now I am on a first name basis with every doctor, nurse, receptionist and pharmacist in the Nashville area! Well, on the bright side, it's all things that can be dealt with, so that I'm thankful for.
And it sounds like we have a lot in common - 4 kids, 2 dogs, a husband and a recently widowed mother. No lizard though - I have 2 goldfish instead. :D
Hang in there everyone. We're obviously all in good company!
Lori
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I can distinctly remember doing research when I had my first sx. It was a toss-up...did I have a brain tumor or auto immune? I read in some journal that people with autoimmune disorders rarely got brain tumors. Whew...I knew I had an elevated ANA so I thought I was free and clear with the tumor dx. WRONG!
Seems like a double whammy...I wish it had been true!
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Something that I do that many don't understand , and I have had to learn to regulate , is my
busy-ness ... I have to keep going ...I have started subbing occasionally ...mostly half days ...money
sucks but I need interaction with people more than money ... I am still volunteering to do aide work
at school which pays nothing at all but keeps me busy ...then there is Girl Scouts , Cub Scouts , school
work with the girls , 4-H , light farm work and the list goes on
I have to keep moving or I will think about stuff and dwell on it or go to sleep...neither very productive
states ... and it sounds real busy and is but only moderately so... I don't volunteer on days I have Scout
meetings... if the girls have something going on that I need to help them with I don't do a full day of anything
else like aide work or subbing the day they need my extra attention ...only a half a day or nothing so I can
be rested focus on them...
pre-surgery I was working and all the other stuff too and managed ... so now I basically do the same things
I did before surgery just not as much ... and as time goes on I figure I can do more...even a year ago I wouldn't
have subbed to save my life ... and I still avoid any grade over 5th like the plague
We have talked about the new you on other threads ... finding your new self and liking them is key I think to
not stressing out over every little thing... something I have been guilty of and have learned from people
here coping skills that keep me sane most days
I joke about it but truth be know my kids are probably my biggest stressers and at same time what keeps me from
stressing out too much...stressful just because it is hard to have pre-teen girls in this day and age ... things have
changed so much since my boys were this age ...and just keeping up with them and being involved in their lives
keeps me balanced ... hectic but they do balance me and keep me sane ( when they aren't driving me nuts)
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Well, here's what's been going through my head last few days: I read Linda's post and started researching the crohn's angle and it sounds a bit like the symptoms I've been having. Infact, a gentleman at church stopped me after worship and said I had an ulcer, and then did a healing right then and there. He said I had to go off all sugar and start flax oil. I'm already a flax freak, but giving up sugar (that would include alchohol) was not in my game plan, and my husband dismissed it with a "he just heard your belly rumbling after that bowl of chili you ate last night - ha-ha!" The symptoms did get worse (diarea, hives) prompting me to start this thread. See, I always blamed it on a friend's unpasturized goat cheese I ate which gave me flu like syptoms (cramping, diarea) last year even b4 surgery, the episode from which I have never felt 100% since. I even had to call my friends and delicately warn them of my concern, as a public service, and they confided in me about similar reactions to this cheese. I'm thinking this was the introduction of the bacteria and the the autoimmune caused the imflamation to my intestine. But interestingly enough, with the onset of Lent, I gave up the sugar and my beloved wine (and became pretty militant about food), and behold: hives go away and stomach upset lessened until I overate pizza with the kids tonight: Hives popping out, stomach in turmoil. Forced diet.
So now I am occilating on giving up the rhuemitologists apt. because this appears to be controllable with diligence. Also, panels have been run on me in 12/07, turning up negative, even though I have been diagnosed with Raynaud's Syndromeas a child, and these syptoms - seems if you are not having a flare up, the tests are inconclusive.
But I have been heartened by Judy and Clarice' exchange about aging. I had always felt not a day over 25, then woke from surgery and this year has made me realize I am indeed 44, What happened to the in between?! Although I can wait to be a Grandmother ;) (my kids are young), I am looking forward to it, and you both set good examples of how to do it. I do give PT BIG credit, too.
Well, Lori and Darlene, I have only half the kids; nearly twice the dogs ( we have only three, but the kids continually hounding me for a lizard should count as 4), but feel a kinship with you guys anyway. (we window shop at Herpeton)
Soundy, I too like to stay busy with the kids at school/activities, but haven't gained the wisdom not to do it all in one day yet - and I pay dearly the next day for it with fatigue: will try to get better paced and come to peace with the "new" me.
In conclusion, like Amy, I think I'm not going to persue this right now. I just got my life insurance renewal, which we had bought in a 10 year block and is due this month. I already have to anti-up about the brain tumor, so I figure another diagnosis would not sit well with them. I just won't have anything for a couple calendar years!
Goodnight,
Jules
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Hi Jules, I haven't read back your other posts but have you been thru GI tests? I am wondering if you have just irritable bowel. I do unfortunately and do have an anti spasmodic I take at times. I think I am some lactose intolerant also. Some foods can bother me some of the time and under certain good conditions don't other times. One can be also fructose intolerant but the description of what you had problems after eating,don't sound right.
Crohns would make you have diarrhea whcih would not stop and not be food induced. Any chance of food allergies? Many years ago I was allergy tested since my dr was wondering.
Good luck with it all. Makes life not fun, Cheryl R
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Julie,
Maybe the shoe doesn't have to drop!
My MRI showed my An remaining stable. Skin cancer biopsy came back benign. So aside from having some more hearing loss, that I really noticied during the MRI (Last time I heard the technician talking very clearly this time it was a mumbled jumble) things seem ok.
Now if I could just make a decision about what to do!!! Well, I have heard that inaction is action itself. :D
I recommend a lizard except for having to feed it those darn crickets! Although it does bring alot of laughter into our home, every time I try to get one from the cricket cage to the lizard cage the darn thing escapes and my kids are rolling on the floor laughing at the specatacle of me trying to "wrangle" this tiny cricket into a cage. It doesn't hurt that my 100lb labrador is petrified of these tiny crickets and jumps and runs away barking from it. The insanity of my life is what keeps me sane. :D
Lori,
It is amazing how similiar our lives are ! How is your Mom doing? My prays and thoughts are with you both.
Take care,
Darlene
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Good Darlene - I'm glad that shoe stayed put! ;D
It would probably make your kids laugh even more if I happened to be there when a cricket got loose - I'd be hiding behind your dog because I'm afraid of them too! I can't even walk past the thing they keep them in at the pet store - never know when they might get out! :o
And my mom is doing remarkably well, thank you for asking. My dad had Alzheimer's, so in a way, we'd been losing him for a few years and had some time to get used to the idea of his passing. In the end, he was suffering and it was harder to deal with seeing that than it was to actually lose him. I know he's good now though. Does your mom have a hard time during holidays or birthdays? That seems to be when my mom has it the hardest.
Anyway, glad the recent tests all went well!
Lori
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Lori,
Sorry to hear about your father's alzheimer's-my husbands 93 yr old grammy is suffering from that and it is truly heartbreaking. My Dad had cancer and in the end I was grateful for an end to his suffering. My mom has a tough time at the holidays, his birthday as well as their anniversary but she still very much misses him being part of her daily life. Living alone after almost 50 years of marriage is a tough adjustment. The good news is the spring is coming and that cheers her up and once she can get out and tend to her flowers, I know her days will be much better.
I know I felt like I was personally beginning to recover from the ordeal of his illness and passing then a " shoe dropped" and now I have the stress and worry of possible Brain surgery/ radiation. This whole decision/worry thiing is wearing me out. Throughout my dad's illness I was the "stong" one and now I find it difficult to share my real thoughts and fears with anyone. That is why I come to this site, it gives me a great release, alot of hope and even some funny laughs along with great advice. It still amazes me how strong the human spirit is no matter how devastated you can be, the sun can shine another day.
thanks for being there,
Take care,
Darlene
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Hey Jules. How are you feeling? Sorry to jump onto the thread so late, but I just read it and Yes! I have autoimmune issues. As a child I had severe Juvenile Rheumatoid Arthritis (I am very lucky-they thought it was Lupus, but it turned out not to be!) and another undefined immune issue as an infant related to a milk allergy. Post-op I had some seizures and several sigmoid sinus clots in my brain. I insisted that my neurologist do a rheumatoid/immune work-up b/c I thought it must be related to all of the swelling (since the surgeon thought I may have had a reaction to the sponges they used in surgery). They never found a connection, but I am really interested to hear if you find one for yourself.
I am a year out, and am also a positive person for the most part, but the AN recovery has been challenging. I have chronic daily headaches and frequent migraines and feel like the pain makes it hard to stay positive. I find a lot of comfort in this website and in hearing others stories. I love to go for walks outside with my partner--it really perks me up when I am feeling blue.
I hope you find relief and a fun way to stay positive. Know that you are not alone!
Take care and feel better!
Karen
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Well Guys, I decided to come back and see how every one was doing, and give you an update on my inflammation. Turns out, after going to the Rheumatologist. there are no autoimmune issues - Thank God; he sent me to the allergist: Not wheat (tested for) and it was his opinion it was not food related. Swelling continued until after an episode causing me to study a jar of (organic) pasta sauce, and I noticed it had soybean oil in it. After cutting out all soy, (its in everything) my inflammation almost entirely subsided. The occasional episodes remaining finally got traced to the Belgian Beers (with yeast sediment) I occasionally shared with my husband. Woe is me, I gave up beer, but I have no more swelling!
So, in like an MSNBC storyline I subsequently heard, there seems to be a link with Anesthesia and people developing food allergies. Anyone else notice this? The yeast one is old, though. I can make the association clearly now: almost a decade ago during pregnancy and nursing I didn't consume any beer, 1st episode came on after I started enjoying beers with my husband again. All I can say is I should have adopted a food diary a long time ago; and don't necessarily accept an allergists dismissal of food allergies.
A related, or unrelated finding (depending on how you look at it) was revealed by a Dr I visited during my desperate search for what was going on. He maintained that a book called "The China Study" pointed to our culture getting way to much dairy. He agreed with the hypothesis that people who are prone to tumors should stay away from too much animal proteins, especially dairy. He suggested I go completely off dairy for 100 days (which I did, except for butter: I don't have time to make ghee, which is boiled and strained so that the milk solids are removed). I bought into this in part, because I had an organic farmer neighbor, who made the most delicious goat cheese, die from breast cancer. She was vegetarian, and I was considering it, so I recall asking her about how she got enough protein and I recall her answer was from legumes and such, but stated "also, obviously, a lot of cheese...". My results were that I lost the last 5 lbs I ever wanted to loose; hopefully my cholesterol is down; and two benign tumors I had on my skin diminished in size. It can't hurt to cut back was my conclusion. I've since returned to moderate consumption...I can't give up beer AND cheese!
Take Care,
Julie
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Julie .....
Good to see you back again. ..... and interesting developments on your food intolerances.
I know I felt better when I was consuming mostly what we had grown ourselves in a big garden. Now that I can no longer do that, I am very, very careful what I buy and where I buy it. I read labels constantly and buy as much locally grown produce as possible. Giving up all dairy would be very difficult for me ..... I love cheese. We have cut way back on our meat consumption, especially beef, but I cannot quite make the break to being a vegetarian.
I think the effects of food on a person is very individual. In other words, I don't think we all have the same intolerances. I am so glad you have discovered some trigger points for your symptoms so you can avoid them, as much as possible.
Keep posting to let us know how this continues for you. It may very well help someone else.
Clarice
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I have a good friend who discovered soybean oil is what gives her her migraines. Took some time to research to find it out .nother friend who can't have the beloved chocolate as that is what gives her a headache. That would be the hard one to have to pass up! Cheryl R
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Hi Jules,
I picked up on the hives you talked about when you first started this thread. I did a search on hives and your tread didn't come up. I was diagnosed with an AN 4 months ago but for the last 18 months I have been breaking out in Hives on mostly my hands and sometimes my feet. It happens every night unless I take an antihistamine, when I take it regularly I have no symptoms. It's just so weird, since my diagnosis of the Brain Tumor I have been wondering if their is a connection. I suppose it could be an allergy of some sort but I can not connect it to anything significant. I also suffer from mild psoriasi s and had major surgery for scoliosis 20 years ago. I did have a reaction to the anesthetic from spinal surgery, mostly nausea.
I know this a little off subject but just wanted some thoughts on this.
Best Regards,
Sue in Michigan
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Is it possible the hives are caused by stress?
Jan
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Sue,
The hives are pretty much under control by either avoiding foods which have soy in them, and of course, certain strains of yeast. Oddly, the research I did, turned up a connection with soy allergies not being present till you get stressed (the trigger), so Jan has it right to some degree. When I do have something with soy (it is hard to avoid, being in nearly every processed food now), it responds fairly well to Zyrtec. I do not like to take Zyrtec often, as I find it makes me moody and drowsy, so avoidance is my first line of defense. Like Clarice, I am very, very careful about what I buy. Reading glasses are in pocketbook for grocery store visits. But identifying your allergies is key: I advise a food diary - you might correlate it quicker. Allergists can do testing, although they are not 100% accurate at all times, it's a start.
Lastly, I'm not a doctor, but I suspect if it is an allergy, you won't be affected in surgery/recovery. They give you steroids for the swelling, which help with allergies. If you haven't already, tell your Dr. of the hives so they can have a contingency plan in place, like taking your antihistimines for some time. My husband was so afraid I'ld blow a gasket (cfs leak) sneezing, he ushered the flowers out of the room I got from friends, because I am sensitive to some fragrances; he also had me take my veramist (nasal steroidal spray). I did not have any problems for months, so I thought the tumor being removed resolved it.
It was actually not drinking during recovery for me: when I went back to the yeasty Belgians, I got hives again, but we were in denial;) My aha moment came later. May you have your aha moment sooner than later. You may not have it resolved b4 you go into surgery, but surgery will resolve one big thing! Best of luck to you staying calm over this next month!
Cheryl, regarding the chocolates: there is a site called soy free sales, which has soy free Chocolate. Soy lethicin is a widely used emulsifier, replacing more expensive Cocoa butter, but then you don't have to worry about the catch 22: stressed, reach for chocolate!as...
Julie
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Thanks Jan and Julie,
I don't think I was having a lot of stress when the hives first started a year and a half ago but who knows. I take just a cheap allergy pill everyday to avoid the breakouts and it works just fine. I guess a food diary would be a good idea I really need to get to the bottom of this. The Dr. did tell me because it is mostly my hands that break out (sometimes my feet) that it is most likely something I am coming in contact with. I don't drink beer, I do drink Chardonnay, Sav Blanc, I don't know if they have yeast like beer does.
It would be great if they just disappeared after surgery.
Thanks again. I will let you know. Sue