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Hi from one of the frustrated newbies


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#1 Penny

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Posted 10 February 2009 - 04:50 AM

First off, hi there...

I am a forty year old mother of two that is just about done with the Medical Community in general... frustration does not even start to explain how I feel!

I have a long list of diagnosed thingies-

Wildly fluctuating high blood pressure (between 230/160 to 100/46 and everywhere in between on a daily basis)
Sinus and Ventricular Tachycardia episodes (caught on Holter and EKG)
Neuropathy in both arms
Chronic Sinusitis (had surgery once and refuse to let that happen again)
Multiple Duodenal Ulcers
Esophageal stricture
Very high levels of gastrin
Hypermobility (will get more into that... oh joy)
Hypothyroid
Dry Eye
Extreme dry skin
Dry Mouth (complete with "tonsil stones")
Osteoarthritis in my right knee
Bells Palsey
Ocular Migraines
NASH (non-alcoholic fatty liver disease)
Calcified splenic granulomas
Tinnitus (sounds like a nonstop high pitch alarm clock)
Chronic cellulitis (always has at least one infection at any given time)
Hernia (needs surgical repair but can't have it)

I have been checked for things ranging from Pheochromocytoma to Cushing's and my Gastro is currently thinking Carcinoids, but none are seen on CT.

Thanks to the gastric issues I have a very limited diet and have been losing weight and am unable to keep down any of my medications, they have tried giving me zofran but that triggered full blown migraines with vomiting (defeating the purpose) and all the meds to try to stop the production of stomach acid would not stay down as well. The one any only medication I can keep down is over the counter antacid tablets, and I take anywhere from 5 to 20 of them a day just to try to make it through the day... this means that my tachycardia, blood pressure and thyroid are going untreated.

My hypermobility has caused me to have 19 surgeries since 1999 on my left foot and ankle because the tendons and muscles just keep failing and stretching and tearing... and now they say the only thing that can be done is amputation, but that (and the hernia mentioned above) cannot be done until they solve my gastric issues and I can take my medications to regulate my heart.

When my stomach really acts up (not just the daily cramps, pain and nausea) I go from my "normal" to severe diarrhea and breath stealing cramps with only a minute or two's notice... with my heart racing (150+ bpm) and feeling like I am on fire with drenching sweats then lightheadedness and vomiting. These episodes last about an hour or two and leave me extremely weak, chilled and sore. If I can get my hands on my antacid tablets fast enough I can stop it at just the diarrhea and cramping if I can quickly chew three or four, if not I often wonder if I will be found dead on the toilet or bathroom floor. (It has not happened yet, so I doubt it will, but that is how bad it feels). My doctors tell me to get to the ER when this happens, but I don't see how in the world I am supposed to do that... I never have any warning and when it is going on I can't move and when it is over it is over. I have tried to go after it is over, but sitting in a ER waiting room for hours on end when my stomach feels like I have been stabbed and I am miserable and shaking with chills is not my idea of a good time and the few times I tried to do it I was sent home with the whole "drink clear fluids, there is nothing wrong with you" talk.

I have lost all faith in doctors... my PC sent me to a Kidney Specialist to see if there was any kidney involvement with my blood pressure and he informed me that my BP fluctuated wildly because I am a binge drinking alcoholic!!! I do NOT drink, not only because I did once have a problem 15 years ago but also because my best friend died of liver failure due to her drinking.

Just two weeks ago I went to the ER because of severe pain in my left side and it was swollen and since I have a history of granulomas in my spleen I wanted to make sure there was not any infection to be wary of. (I do not and never have reacted to infections normally, once I was almost sent home from the hospital with a ruptured appendix because my white blood count and temperature were normal, lucky for me one Intern looked with an ultrasound and saw something that concerned him, when they opened me they estimated that it had ruptured six hours earlier) I sat in the exam room for four hours... they came in and took my BP once (210/99) when I first went in and no one else came near me for four hours. Finally, the Dr came in and I explained my concern... and she laughed at me and said "what, you think it will explode or something?" then proceeded to tell me that since I am allergic to iodine a CT would probably not show anything worthwhile, but she would send a nurse in to start an IV with pain killers and zofran. (This was after I told her my reaction to zofran when talking about nausea) I reminded her that my chart stated clearly that I am allergic to all narcotic pain relievers and would not take zofran, that I was not in there for the nausea and just wanted to make sure that my spleen was okay. She then left and a nurse came in to start the IV, I asked what was in it and was told "something for your pain and nausea", when I asked what exactly was in it she checked and said "zofran and (a narcotic pain reliever) are in these syringes" that she would inject through the port after starting the IV. The doctor completely ignored me and I was both scared and livid, I refused the IV and immediately signed out AMA (against medical advice) because I could not trust the doctor and was horrified that they were about to downright poison me!

Just this past Thursday I saw a new doctor for my foot and ankle (a second opinion for the next series of surgeries that my ortho wants to do) and it was at that time that she did the Brighton test and informed me that I am hyperflexable and she was positive that I have a connective tissue disease and that was the reason all my surgeries failed.

It was a month ago that I was diagnosed with Sjogren's, but that does not explain everything going on.

(Munches my cookie) okay, my pity party is over...

I actually have gotten so desperate that I contacted John Hopkins and they will take me if my Dr calls their Physician's referral services to set up a protocol... it is my final hope. I contacted them before seeing the new Ortho...

Scleroderma has many aspects that seem to "fit" and I am now wondering if it is in my mix somewhere...

My family has Lupus on both sides, all my Aunts have it, my Grandmothers both had it and my Mother has it but the last time that I was checked (5 years ago) I was negative for it.

So... anyway...

Hi :D

Penny

#2 janey

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Posted 10 February 2009 - 05:42 AM

My good Penny! You certainly have been through the mill! I'd like to welcome you to the ISN forums. I hope we can be of some help or at least some comfort. You found a place that doesn't mind pity parties, that's for sure. We even have a page dedicated to pity parties.

It's heartbreaking to read about everything you have been through and what you are still having to deal with. The bit about doctors is not surprising with everything you have going on. Sometimes it seems that the more you have going on, the worse the success with getting a diagnosis and dealing with doctors. Your combination of symptoms is probably more than most doctors can deal with.

You mentioned that you have Sjogren's. From looking through the Sjogren's page here on ISN it might be that this disease is attributing to some of your problems. Also Sjogren's is one of those diseases that tend to overlap with other diseases. Be sure to take a look at the overlapping disease section.

I certainly wish I had some answers for you, but I'm a patient not a doctor so I'm not even going to try. I think your efforts in getting into John Hopkins is a smart way to go right now. While reading your story I was thinking that you should park yourself in a hospital bed somewhere with a team of great doctors and don't get out of bed until they find some answers. Good luck on getting the referral. If you can't get it from your doctor, you might try contacting your insurance provider directly. You never know. My insurance company has surprised me a few times (in a good way)!

Please let us know if you get into John Hopkins and then keep us informed as much as possible. In the meantime, hang in there Darlin' and some big, but gentle hugs sent your way.
Janey Willis
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#3 Margaret

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Posted 10 February 2009 - 07:20 AM

Hi Penny ,

Welcome to the group. You sound so frustrated and bummed by the lack of diagnosis and treatment. I can sure understand why. I am not a doctor but the first thing that came to my mind was whether you have been checked for Guardia (Giardia) Lamblia. If you Google it there will be some reading for you......see if some of those symptons match yours. It is a parasite that can be found in well water and most people don't have a severe reaction to it. Just an idea.....sure hope you can find the answer.

Take care, Everyone.
Margaret

#4 debonair susie

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Posted 10 February 2009 - 10:02 AM

Hi Ppbb! My goodness, Girlfriend...what are we going to DO with you?!

(Please forgive me, but I must comment on your photo...this little doggie is so ADORABLE)!

Penny, I am so very sorry that you have had such horrible experiences with the medical community in your area. As Janey mentioned, I tend to believe that also... the doctor(s) may well feel overwhelmed with all that you have going on in your little body...that they may not know where to begin.

However...in my opinion, it does NOT excuse their lack of professional behavior when it comes to respecting you, the patient. I believe that anytime a doctor feels he/she cannot treat one's illnesses, then it is up to him/her to submit and refer the patient to a doctor/specialist who IS able to treat the patient.

I truly feel that the greater population of doctors ARE very caring and quite capable of treating patients. Yet, the few who do as those you have seen, really have a lot to learn...literally!

You definitely have much going on and I so hope that you are successful in getting into John Hopkins.
Whatever you do...don't give up on getting in.

Please keep us posted, Penny. So many of us can empathize, believe me.
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#5 nan

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Posted 10 February 2009 - 10:09 AM

Penny,
I am so sorry for what you are going through... I go to Hopkins, but now my insurance is telliing me they won't cover my visits anymore because Hopkins is out of network. Has anyone ever mentioned Ehlers-Danlos syndrome, the hypermobility made me think of it.
I have CREST, Sjogren's, GAVE, GERD, and Fibromyalgia. I have digestive isssues, but not as bad as yours. If you can get into Hopkins try to get to see GI doctor- Dr. John Clark- He is awesome!!!!!!!!!!!!!!!
Take care of yourself,
Nan

#6 Peggy

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Posted 10 February 2009 - 11:04 AM

Welcome aboard. WOW! I can't believe what you have had to go through. All I can say is keep at it until you find an answer. It took me a year of going from doctor to doctor and different medical facilities. I knew something was terribly wrong and I was told it was..................in my head; or it was fibromyalgia; or it was post-polio; then it was MS; no one knew but I kept getting worse. I finally got in front of a neurologist who wasn't satisfied until he could "put all the pieces of the puzzle together". Now I have been diagnosed with 6 different autoimmune diseases but at least I know what I have! At least now I can say "AHAH.....TOLD YOU!" That's exactly what I would like to say to all of the doctors I saw before I finally got my diagnosis.

You really need to stay on this until you get answers. You have way too much going on not to take it seriously and find out what is causing it and to get going on a proper treatment.

I wish you good luck and please let us know how you are doing. This is a great place to come to vent, for support, and for answers to questions.

Warm hugs,

Peggy

#7 Shelley Ensz

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Posted 10 February 2009 - 11:53 AM

Welcome to Sclero Forums, Penny! I'm sorry for all you're going through, but you have certainly found the right place for getting some support during this difficult diagnostic process.

I was rather struck by your loosening ligaments. To the best of my knowledge (keep in mind I know next to nothing, will you?) this may not be related to scleroderma; with scleroderma the issue is a tightening and hardening of skin and connective tissues, rather than a loosening. However, I have heard of another connective tissue disease, Marfan's Syndrome, which I think involves a loosening of the connective tissue sometimes, especially causing joint hypermobility. Perhaps you could read up about that, and see if any of the other symptoms fit?

The National Marfan Foundation (listed in my link above) has a symptom checklist on their site, and under it they have a Differential Diagnosis list, which you may also want to look into.

Regardless, whether that shoe fits or not, welcome to the Forums and I hope you also visited our Pity Party link that Janey gave you. It's my party and I'll cry if I want to, cry if I want to, you would cry too if it happened to you....


Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#8 Sweet

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Posted 11 February 2009 - 05:10 AM

Hi Penny,

Welcome to the Sclero Forums. First of all I want to say, I love the picture of your furbaby! What a doll.

Secondly and more important, I'm really sorry to hear about everything you have going on. My head was swimming after reading your post, so I can only imagine how you must feel!!

You've received some great links thus far. I hope you've been able to review them, and find them helpful. Take one day at a time, don't give up hope, just keep plugging forward, and come here and vent to us whenever you need to!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Penny

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Posted 11 February 2009 - 10:40 AM

Hi all and thanks for the welcomes...

Margaret-

They checked me for Guardia years ago and it was negative. The symptoms fit a little, but not with the sudden onset and duration of the worst attacks. They also have done the full spectrum of food poisoning testing, pancreatitis, gall bladder and scoped me from bow to stern and back again. The found the peptic ulcers (biopsy was negative for infection), the trachea stricture (which they manually tried to stretch, but the feeling of food catching in my throat and difficulty swallowing came back within a month) and widespread non-erosive inflammation in my stomach. The idea to look at possible Guardia was a good idea and a great suggestion and maybe someone else reading this post will see it if they are having problems and get checked.

Susie-

Thanks! Loki is a ham and a half for the camera, I swear he sees it come out and starts posing right away and smiling. That little dog (long haired Chihuahua) is my sanity and believe it or not my fully trained Service Dog! He can turn on and off lights for me, pick up things I drop, get my inhaler and phone for me, get anything I point at and ask for that he can carry or drag and get help if I need it. (He does have a little Chihuahua attitude when he thinks I might be dropping something too much... lol, if he has to get something more than once in a few minutes he will toss it at me and give me a look of complete disgust as if saying "this is not a game and if you drop that thing again I might just let it stay there and teach you a lesson") I trained him myself with the help of some books and a great trainer that was willing to give him the test to be certified, since most Service Dog groups insist a dog must be at least 35 pounds so they can pull a person in a wheelchair, but since I have very little hand strength I wanted a small dog that could travel easily and ride in my lap in my wheelchair since I would not be able to hold the harness for a larger dog. I chose a chihuahua puppy because they have the largest brain to body size for dogs and as it turns out, the reason most chihuahua's are so neurotic is because they do not get the stimulation they need and they basically go crazy with boredom.

Nan-

The Ortho I saw last thursday mentioned Ehlers-Danlos as a possibility and it is one of the things that I will be discussing with the dermatologist and Rhumatologist, once again, many things 'fit' with that disorder but I will know more when a skin biopsy is done and we possibly get some answers.


I think one thing that gets me is that I have been on this treadmill for... oh... over 20 years or so. My family used to consider me a hypochondriac and in recent years when tests were done and abnormalities noted they would say "okay, so something is happening there... just don't milk it", then more and more tests would show abnormalities, small pieces of a larger puzzle that no one seems to want to put together. I no longer tell my family anything, it is just not worth it.

Cross over is a distinct possibility... all I know is that I am progressively getting worse. There was a time that I golfed, hiked, trained and showed horses, belly danced, painted and sculpted. Now I have to take breaks when brushing my hair because my heart starts racing and I get out of breath... I can't control a paint brush so painting is frustrating and I spend my days in bed because I just don't have the energy to get up and since I can't take anything for pain my knee and foot are constant torture. (I was going to a major University Pain Management Clinic, but they ran out of things to try on me and are on hold until I can take any medications)

That does not mean that I have given up, though there are days that I feel like just stopping the chase for a diagnosis and treatment and just lay back and let what happens happen, but usually I try to keep busy reading (when the double vision and ocular migraines let me) or writing and when things get bad I schedule a private pity party. I plan a day that involves horrible movies that always make me cry and let myself vent and get it all out of my system and the next day I am ready to get back to the hunt.

My hubby has a morbid sense of humor and I will fall right into it with him and we will make a joke of what is going on... like the upcoming amputation (as soon as I am able to take my heart and thyroid meds again)... we are thinking that a tattoo of a dotted line with "cut below the line" on my leg would be funny. (When I had my last surgery on my foot I went to the Hospital with a gift for the surgeon, a bright gift bag filled with Duct tape in every color we could find because we had joked with him that if he could not fix it to Duct tape it). It may seem juvenile to some, but when it feels like you have lost all control of your body sometimes taking a little back, even in a silly way, seems empowering.

:D
Penny

#10 Cher

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Posted 11 February 2009 - 12:00 PM

Hi Penny,

I am so sorry to hear of all your problems. I am new here too and have already been helped by some of these nice ladies. I have NASH as well, I also have very dry skin. I don't have any of your other problems. I am undiagnosed. I came down with severe hives six years ago. While I was in the hospital I was put on Doxipin to keep the hives away.

If I get off of the Doxipin the hives come right back. I like you am fed up with the medical community. They say I have an auto immune disease but they don't know which one. I was also checked for carsinoid, normal. I have severe flushing. All of my blood work is normal except for high anti smooth muscle antibodies. Keep your chin up.

I just wanted to let you know that you are not alone.

Cher

#11 Penny

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Posted 11 February 2009 - 01:26 PM

Cher-

I also have severe flushing (forget red, I go purple).

Have they ever checked your copper level? I ask because the smooth muscle thing reminds me of my husband, and when his was found to be elevated they checked his copper levels (he also has NASH) to rule out Wilson's Disease. The urine test is a 24 hour urine catch like they did for the carciniods.

Flushing, along with night sweats and blood pressure and heart rate issues are also symptoms of pheochromocytoma, which they also check for (initially) with another 24 hour urine catch.

You can also see an Ophthalmologist, they can look for another hallmark of Wilson's, a copper colored ring that they can see in the eye.

(There are good things and bad things about being in diagnosis limbo... we get an education on medical conditions that most have never heard about and get to play armchair diagnostician while watching HOUSE on TV, the bad part, of course, is wondering if we are just nuts... if I am nuts I want to be a cashew)

I hope that they find a way to relieve your hives soon... hugs and smiles.

:D
Penny

#12 Cher

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Posted 11 February 2009 - 02:43 PM

Hi Penny,

Does your husband have Wilson's? I have never been checked for that, my blood pressure is always good. I don't have night sweats, or headaches.

The other thing you mentioned, I recently had two ct scans done one with barium and contrast and the other one was for carcinoid with the radio active tracer. They were both normal no tumors. I feel so bad for you with all of those medical problems. Is your husband very sick too?

I was told that anti smooth muscle antibodies were found in Autoimmune Hepatitis, I had a liver biopsy done in'04 and they said it was Nash. I have very swollen hands and they are very shiny.

I am not bothered by the hives as long as I stay on the Doxepin. Thank you so much for your input, I have to have an eye check up anyway so I'll mention it to the doctor. One thing that I do have that maybe you have an idea about is very swollen eyelids.

Thank you,

Cher

#13 Penny

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Posted 12 February 2009 - 04:20 AM

Cher,

My husband does not have Wilson's, he still has elevated copper and as a result he is on a copper free diet and that does seem to help him feel a little better.

He has fibromyalgia along with NASH and stage 1 hypertension but is still able to work and function on a daily basis, though he does suffer from the aches and pains as well as the fatigue of fibromyalgia.

The swollen eyelids sound a little like Blepharitis (I get that occasionally) and can be caused my many conditions such as Seborrheic dermatitis and Rosacea or can be the result of allergies. An eye doctor can usually diagnose this easily with an examination.

:D
Penny

#14 Cher

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Posted 12 February 2009 - 08:50 AM

Hi Penny,

Thank you for the info, you are very knowledgeable. I don't know how you do it with all of your medical problems. Are your children still at home with you?

I am still working, I do very stressful physical labor. Thank goodness it is only part time. I still have all of my boys home. They are all grown but because the economy is so bad they have yet to fly from the nest.

I made an appointment with the eye doctor today, I am going March 9th. It would be nice to have some answers, I have had diarrhea for six years. It started two weeks before the hives, I have good days and bad days but it is always with me. I know where every bathroom is in the southwest suburbs of Chicago. I have not let whatever this is stop me though.

The swelling in my eyelids started then too. Everything I have has been very gradual. My hands started swelling then too. So for six years things have been slowly progressing. In November my eyelids really got swollen. I went to my primary doctor and he started me on the doctor go round again.

I don't think that I have Bletharitis, I checked that already. My eyes don't get crusty or tear. I went to an allegist and she said it is not allergy related. If I take Zytec D the swelling goes down some. Not one doctor knows what this is. And I have been to four Rheumatoligists in six years, as well as a Hepotoligists a Hemotoligist, and an Allergist.

I like you am very frustrated. And I am not nearly as sick as you.
Anyway, thanks again for your input it helps.

Cher

#15 debonair susie

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Posted 12 February 2009 - 09:45 AM

Hi (again) Penny and Cher,

I just wanted to say that you have a great dialogue going on, here. That's one of the many great things...about this forum...that works so well for all of us. The exchange is not only informative, but can be helpful also!

Penny, that is one neat little dog! That you trained him yourself, to accomplish what your needs are...is wonderful!
My daughter, son-in-law and granddaughter also have a long-haired chihuahua. They went from a great dane, to a pitbull, a pair of boxers and finally to Calypso (Calli). How's THAT for a size change?!

With the process of elimination going on here, as well as the knowledge you have gained along the way, I'm keeping my fingers crossed you're nearing the answers to this complex puzzle.
In the meantime, I so appreciate your keeping us abreast of your findings.

Cher,

You also have troubling symptoms, none of which are at all pleasant. For each, there are some of us who experience either..or both the diarrhea or the hives. Hopefully, you also can get answers soon!
Special Hugs,

Susie Kraft
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International Scleroderma Network (ISN)

#16 Cher

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Posted 12 February 2009 - 10:39 AM

Dear Susie,

Thank you for your support. What is the animal you are holding in your picture? My eyes are not that good, it looks like a little black lamb, is it a cat?

Cher

#17 JANQ

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Posted 12 February 2009 - 01:40 PM

Hi Penny!

I brought my own cookie!

I just wanted to offer you some hope and support. I wish I could help you and could offer some suggestions, but I am still researching my own problems, and being fairly new to this, haven't gotten far. But learning and learning and making progress!

I hope that you find your answers soon! Hang in there, keep that smile! Never give up and never lose hope!

Best wishes and lots of luck!

Janet :)

P.S. (You made me smile so many times with your wonderful sense of humor. Laughter is the best medicine!)

#18 debonair susie

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Posted 13 February 2009 - 08:17 AM

Hi Cher,

Thanks for asking! The photo IS quite dark, isn't it?
She is our little black toy poodle, named Muffet.

We adopted her 2 years ago, this past November.
Her "mom" was an elderly lady, who had a stroke,
had to go to a nursing home and passed away.
It was easy to see that the little dog was loved very
much, as she is so well behaved and sweet as can
be! She immediately fit into our family and we feel so
fortunate to have her with us!
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#19 Cher

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Posted 13 February 2009 - 09:00 AM

Hi Susie,

That is so sweet, I love dogs. We have a Golden Retriever named Murphy. He is such a good dog, and so smart. My husband and I have to take him in to the vet tomorrow, I was petting him and felt a lump on his side by his ribs. I am a little worried, he is everyones baby around here. I couldn't handle a dog with cancer right now.


Cher

#20 Penny

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Posted 13 February 2009 - 12:05 PM

Cher,

I hope that everything is okay with Murphy, I know what it is like when one of our "fur children" gets sick. (Loki has pancreatitis and is on prescription low fat food. He is a great dog but always begs for some of my TUMS).

My children are both going to school in Pennsylvania, my daughter in college and my son to high school. I had them move up there (with my parents) when lockdowns because of guns became so frightening here along with the rampant drugs and increase in gang activity. Where they are living, the worst crimes are a rash of cow tippings. Their safety comes first and foremost and the hubby and I are hoping to be able to move up there soon. (He has a good secure job with great insurance and we are afraid to lose that in this economy.)

It is kind of hard to see you saying "I like you am very frustrated. And I am not nearly as sick as you," because what is happening in your life is every bit as complicated and real as it is for me or anyone else. (Please, please, please do not think that this is in any way shape or form a rant on you or anything like that. I don't know how to put it in words properly and have been typing and backspacing for a while now.) Your health is important, and that means all your health including emotional, please do not see my symptoms and think anything like, "She is worse off, why am I complaining," because what is happening to you is real. It is happening and you deserve to know what it is and how to best deal with it.

I remember one time I was at physical therapy, feeling sorry for myself after my 12th surgery on my ankle and I met a woman who slipped on a plastic lid and was paralyzed from the waist down. I talked with her for a bit and told her, "Here I am feeling sorry for myself and I see you and feel like a self centered jerk," and she got mad and told me, "Why can't you feel sorry for yourself? You are in pain and going through rough times, just because you think I am worse off you aren't allowed to feel sad? There will always be someone worse off than you out there in the world, but that does not mean that what is happening to you does not matter."
Those words hit home and made me think.

I am sorry if I have upset you, that is never my intention. And no, you have not upset me. My husband will tell you that I am "the great defender" because I will be vocal about defending the rights of others when it comes to self-worth and emotional worth.

Penny