The Other Shoe?

[JulieE]

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

[joebloggs]

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.

[windy]

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   

[JulieE]

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

[lori67]

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

[Sue]

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

[Soundy]

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

[JulieE]

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!

[amymeri]

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...

[Catflower]

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

[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 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

[Soundy]

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...

[JudyT]

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

[Soundy]

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 ...

[MAlegant]

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
[/quote]


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