WTF?!?

Tags

anger, emails, facebook, hate, hurt, illness, sadness, twitter

I have a friend… Well an acquaintance. I met her through a online friend.

As long as we talk about her… We talk. If I talk about me, she always says, “email me”. So I do. BUT… She never responds to my emails.

Today I apparently insulted her via twitter… Oh well. I give up. I sent her an email trying to explain what I meant.

This is one of the many things I’m in a “mood” about!

I can not comprehend

Tags

allergies, exhaustion, nerve damage, pain, positive energy, relationship issues, stress, swelling

I can’t. I honestly can’t even begin to tell you how drained I am. I am trying to stay positive by focusing on my friends but I am about done.

I’m in pain. If it’s broke, it’s flaring. IC, Crohn’s, AS, Neuropathy (both large and small), the nerve from my surgery, GERD… I feel like a big ball of OUCH!

Add the household stress… My husband blames my kids for everything even when confronted with the knowledge that it’s his son. I am…. Frustrated. Stressed. Mad.

Case in point: 19 year old is done school this semester. The dishwasher needs run and emptied daily. No one loads it or runs it. He says the 16 year old should load it and run it after school. If by some miracle it was run then she should empty it. That on top of the other stuff she has to do. My son sets the table and clears it nightly. What does his son do? Nada. But my kids should do it all.

Do I feel better now? No.

Grrrrrr….

Something finally went right!

Tags

diaphragm plication, doctors, faith, healing, lung tumor, restrictive heart disease, surgery

Yes I know I forgot again. I haven’t been here for ages. Actually this time I was busy getting my heart all better.

Let’s see… Where to start…

I met this man. He was tall, dark and handsome and he made my heart race. Literally. He is my cardiologist. He did a stress test and determined I had restrictive heart disease. Seriously? I’m 37! (Shhhh! Don’t tell anyone that).

So after a long discussion, some xrays, CT Scans and more tests… It was determined that I had a lot of other organs and such in my chest to the point it was affecting my heart. He referred me to a thoracic surgeon named, Dr. Henry.

Now I am a cynic when it comes to doctors, BUT… He was young and straight forward. He told me I needed surgery. Which of course scared me. So I asked for time to think. But as I thought about it, I got worse. I couldn’t walk or talk without barely being able to breathe. My ankles were swollen almost all the time.

So, I decided to have surgery. Now he warned me this would be painful but WOW. Between my back and this I feel like a truck ran over me. The weather been crazy but I feel great. I can breathe, walk up stairs… My ankles are normal size!
I actually lost a few pounds too. Now don’t get me wrong, organs still need to move back to where they should be but I feel much better now that I don’t have constant chest pains.

Thing is… I was my own patient advocate. I found a cardiologist. I referred myself. I asked about surgeons and surgery. I investigated what needed to be done. No doctor was even willing to help. “Why do my legs and ankles swell?” “Oh we don’t know but here have some lasix”

I mean seriously? If I hear “that isn’t my field” from a doctor one more time I’m going to scream! Then why are you treating me for an unknown illness??? Who may know? I think doctors today are so focused on law suits that they are forgetting how to deal with patients.

Oh and don’t get me started on my awful hospital stay…. That’s a whole other post!

I can’t seem to get this down.

Tags

ankylosing spondylitis, brain tumor, cancer, elevated hemi-diaphragm, grieving, leaving, lung tumor, neuropathy, panic, patience

*sigh* My body is truly trying to bump me off. It’s like I have a mafia hit squad in my genetic make up.

I want to scream. I want to cry. I want someone to hold me and tell me it will all be okay.

Friday I went for a surgical consult. I knew that I had the elevated diaphragm and that it was causing all kinds of issues. However, I was unaware the extent of the lung mass I had. Apparently it is 3.2cm, positioned in a very precarious spot. Where it is located in the lung, it is pressing the aortic arch and the phrenic nerve.

Now what does this mean? No biopsy. Too dangerous. They could hit the heart valve and sploosh! Lung is full of blood. Or sever the nerve. Which also would not be good.

The alternative? A PET scan. Well my insurance has no desire to pay for a PET scan and the doctor’s office is “oh yeah we will get it covered” and I’m like “I need to know soon because I have to cancel it if not”.

So I wait. Why am I spazzing out? Because the surgeon said it’s probably cancer. If it is then it is at least an 1B tumor and that has a 15% survival rate during the 1st 5 years.

FIFTEEN?!?

This lump, lesion, tumor, whatever has been there for roughly 8 years. They have always ignored it. Now, what if it is cancer? I have an 85% chance of dying because everyone ignored it. If I hadn’t pushed and pushed, collected reports and scans and doctor’s notes then I wouldn’t even have known it was there!

What right do they have to keep information like this from us? Was it in my best interest? No. Could I have done something must sooner if I knew? Yes. Would I be as upset and worried? No. Why? Because 1 cm makes a difference in mortality rates, significantly.

So when will I have answers? Who knows. Until then I get the privilege of worrying myself to death. Maybe that will kill me quicker so I get it over with!

Until next time… Farewell…

I’m Baaaaaaack!

Tags

brain tumors, depression, headaches, histamine intolerance, horner's syndrome, issues, lung tumors, medications, neuropathy

Well… So much has changed lately. I decided to take the histamines out of my diet. That’s been difficult. Basically I need to get it together. Forget the doctors. Forget the bs.

I have a new regiment. Still working on the ankle. So I get up. Stretch the ankle with the exercises. Ride the stationary bike. Ice the ankle. Eat my breakfast. Shower, dress, off to work. Get up out of the desk chair and walk more. Home. Dinner. Bike. Or bike then dinner. Relax and then bed.

Tonight I am going to a tastefully simple party. Why? I can’t eat any of it. BUT I do use there stuff to cook for the family so I am going to buy a few things. I enjoy home shopping parties. Gives you time to see and catch up with friends. Have a glass of wine (on the no no list but there are exceptions)

Today my headache is worse then ever. I can’t spell. Or copy from one page to another. Vision is awful especially in my right eye. *sigh*

Ohhhhh and I found out I have this lung tumor that’s the size of a half dollar!

That’s TWO tumors and you know what the doctors say? No big deal. Seriously?? I have 2 tumors and it’s no big deal? Ok so ignore that issue. No arthritis? Ok ignore that issue. Swelling? Ok ignore that issues. Elevated diaphragm? Ignore that issue. Heart being squeezed by diaphragm ad causing damage? Surgical consult. Oh and did I mention that NONE of my doctors agree?

So here I sit, doped up on medications and my head STILL pounds.

I give up on the medical field. They are incompetent!

Where to begin…

Tags

allodynia, AS, crohn's, diagnosis, fibromyalgia, insomnia, lupus, rough draft, starting over

We wiped the slate clean. What do I have? No clue. Do I have anything? No clue. I have some physical stuff. The diaphragm, the osteoarthritis all over the place (feet, hips, pelvis, hands) and all the surgical wounds, battle scars and of course the bruises that never leave. Besides that?

Nothing. Nada. Zip zilch.

So why do I feel pain? Why are my feet numb?

Well… I have something wrong with my brain. Apparently it suffers from Munchausen Syndrome even though I don’t. I loves to make me sick. It likes to make me sick so much that it fabricates illness in my body. Inflammation, swelling, even does enough damage that they “correct” the issue.

Then after a while it moves to a new body part and the old one is miraculously healed.

This is why I am allergic to everything under the sun. Why if there is a reaction so rare I have it. I stopped reading medication side effects just for that reason. So I can’t possibly know what “might” happen in hopes it won’t… But it does.

So I am back to square one.

Who do I see? What do I expect? Who fixes mix ups in the brain? The input/output is broken. Can I take it to geek squad? It’s an electrical issue right? I wonder if it’s still under warranty? Or is this something a mechanic fixes? Is this like having a bad wiring harness???

For several years my whole life operated around the disillusion that I had a specific illness (or 6) that I don’t have. But can someone please tell my brain this?

It still hurts. There are still muscle spasms, foot cramps, numbness and pain. What about that?

The good thing is no more medicines that I hate. No needles. No more horse pills. No more special oils or rubs and creams that stink!

Of course no more support network. No more groups of people who care (or pretend to). No more walks or fundraisers or find a cures. No more tshirts. No more.

See on one hand I am glad. Glad to know. Glad to move forward and try to figure out what is wrong. The other part of me is sad. Sad to leave. Sad that I feel as though I mislead groups of loving and kind people based on a false diagnoses.

Moving on….

I’ve given up the crack.

Tags

addiction, crack, doctors, drugs, facebook, karaoke, social media, tmi, tumbr, twitter, valentine's

Social media is an addiction and an evil one at that. I liken it to crack only it turns people into attention starved whores and high school bullies, not real whores, robbers and murderers. Where else in the world can you go and get 1,000 updates in less than 10 minutes from all your family and friends?

But there is that evil. It lurks there. Every page you go to. Every thing you “like”. Jealousy. Attention seekers. Bullies. They’re all there. Were you my friend in (elementary, middle, high) school? Real life, on the web? Do I know you? Communicate with you? Trust you? Do I have your phone number? Email? Birth date? Have we met? Then why should I friend you? Do we have a mutual (interest, illness, friend, family member)? Do we play the same games?

I have decided to put it away. I’m not saying I won’t ever go on… But I am backing off. I have seen some very ugly stuff go down as of late and I prefer to not be apart of it. I want to be in the dark. I want people to call me if they need to tell me something. I want to rely on email, letters and phone calls to hear from my friends and family. Ok ok so I am keeping my IM clients around but it’s not so easy to keep up with everyone via telephone.

Goodness… What are we getting are kids into?? A world of TMI. *gesh*

I am seriously considering getting rid of the smart phone and down grading to a semi smart phone. Slightly more intelligent then my sister’s plain cell phone but not as smart as the blackberry or android.

Any way… New rheumatologist appointment tomorrow. Back in the boot for a minimum of 1 week. Then my emg and neurology follow up. Busy, busy, busy between now and Valentine’s Day.

Oh and not to forget the anti-valentine’s day party on Saturday. Woohoo! Drunk karaoke!

Bite Me Stupid NSAIDS

Tags

ankylosing spondylitis, chronic pain, fibromyalgia, kidney damage, lupus, medications, migraines, Nsaids

Yep that’s right. BITE ME! I am allergic to NSAIDS. I have a systemic allergy. My legs (well mostly my legs…) Swell up like a balloon.

Now back to recent posts. Brain tumor. Yep it’s there. Apparently been there my entire life most likely. So the doctor thinks it isn’t the cause of my issues. Ok… Then what is? What it the hellish pounding in my head?

A migraine is what they say…. Soooo… What do you give for a migraine? Yep you guessed it. NSAIDS. Guess what I can’t take. Right again! NSAIDS. Guess what my doctor prescribed…. NSAIDS.

Guess who is screwed. Me.

Not sure if I ever mentioned this but I HATE DOCTORS!

It’s all in my head… Literally

Tags

ankylosing spondylitis, asthma, brain tumors, chronic pain, fibrmyaglia, lupus, neuropathy, venting, weight loss

I am so f’ing mad I can’t take it. I want to scream at the top of my lungs! How DARE he! I mean really! I put my faith and trust in these doctors and then you get visit notes that say “Patient is probable for SLE and has Ankylosing Spondylitis” then further down is says, “There may be a psychiatric component since patients symptoms seem to come and go.”

So all of those familiar with auto-immune illness know that these can wax and wane. Some days are worse, some are better. I’m not in constant pain that is a 10. I am not crippled (yet) but I do feel the effects all the time. Of course this is getting worse daily right now ( probably due to stress) but I am still up beat… I’m surviving. So excuse my Mr. Hot Shot Neurologist if I don’t come in and go, “oh this is the worst pain EVER!” I’ve had aseptic meningitis. I have had a placental abruption DURING birth! This hardly qualifies as severe. Mostly I can ignore the pain. Of course if those little monkeys would stay out of my head at night life would be better.

So now I am once again labeled a head case. This isn’t the first time and I’m sure it won’t be the last. Oh and while I am being called a head case he lists all the stuff I DO have… Mild large fiber polyneuropathy and severe axonal small fiber neuropathy. I could run down the list but really if you just look back a post or 16 it’s there… Wait let me find it for you.

http://apersonnotjustapatient.wordpress.com/2011/09/28/where-to-begin/

There. This is now an incomplete list. So lets add:

19. Large Fiber Polyneuropathy
20. Postmenopausal atrophic vaginitis
21. Surgical menopause
22.Urethral instability
23. Condylomata acuminata
24. Dyspareunia
25. Sleep apnea (mild)
26. Constipation
27. Diabetes
28. Brain tumor
29. Asthma

Are there more? Maybe. My pulmonologist is working on diagnosing me as fat too but I don’t think that is an illness per say… So there. My list is currently as complete as I can make it. Now I want to see this shrink and see what they say!

My weight loss took a big hit too. Nothing like finding out you have a brain tumor to make you take ad dive off the weight watchers bus. *sigh* I’ll get there eventually.

I meant to post but forgot… Blame it on the brain tumor

Tags

anklyosing spondylitis, brain tumors, fibromyalgia, happiness, neuropathy, selfish people, sickness

I did. I meant to come and visit, type a post, read some blogs, etc… But I forgot.

Blame it on the brain tumor.

Yes folks. As if I didn’t have enough illnesses, diseases, crud… I… get a brain tumor. I swear I just can’t stand anyone else being more sick then I am.

It’s like I have Munchausen Syndrome only I really get to be sick. I mean really??? Did I need a tumor?

So far in 2012 I have a staph infection, declared diabetic and now I have a brain tumor. I was hoping 2012 would be a BETTER year then last year. The only good thing medically was I received my actual Ankylosing Spondylitis diagnosis. What was taken away by one doctor was gifted by another. All in one breath he said, “well since you’re diabetic (news to me), we can’t treat you with steroids any more for your AS or neuropathy. The chronic migraines are probably from the brain tumor. Now don’t panic.”

Don’t panic? DON’T PANIC?!?

“I want you to see a neurosurgeon as soon as possible.”

Yeahhhhhh… Don’t panic.

So this is me, not panicking. I’m cooking homemade chicken stock to make homemade chicken noodle soup and monkey bread. I’m going to watch awful old movies and have dinner with my Daddy and NOT PANIC.

Blah…. Wednesday is too far away!