Grrrrrr! Some doctor's just don't understand this disease!! *Warning TMI*

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CajunGrl
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   Posted 9/17/2009 10:23 PM (GMT -7)   
I take the Depo shot because I have a really bad menstrual cycle. I have cysts and fibroids that flare up and are really painful when I bleed. Besides the pain, it keeps me in bed for almost two weeks, makes me feel like I have to pass out, I bleed through my clothes and I bleed for over a week real heavy. It's horrible! It's enough this disease has me housebound but at least I can get to the couch and sometimes drive, when I'm not on my cycle. The Depo shot has really helped me.

Anyway, last month, my gyno let my husband pick up the shot and give it to me. She knows how sick I am....or so I thought! I called the other day to see what she thought about me being on the Depo shot and having a picc line. She had her nurse call me back to say it was ok to still do the Depo with the picc line and also told me I had to go in for a pap smear. Grrrrr!!!!! I just want to scream!! I'm in pain 24/7....can barely walk sometimes, and she wants me to go in and get scraped!! How lucky am I??? She won't refill my shot unless I have this done and doesn't understand why I hadnt done it since 2007. Well, I was due again in 2008 and I was sick darn it!! Now that I'm getting a picc line, I have to get a pap smear now???? How stupid are some of these doctors?? I mean, HELLO, I'm sick....that would be the reason I'm getting a picc line!! They just don't get it. I told the nurse to tell her and she said she still wanted me to go in. So, I told the nurse that I wanted the doctor to return my call so I could explain. No cal....nothing. So, I guess I will have to drag myself in there and get that wonderful procedure done. Yay me! And you know that I "don't look sick", so I'm sure they won't think I'm as sick as I am. I'm tempted to walk in with a cane since that's where I'm headed anyway! Grrrrr!

So, that's where I am now. I need to get my shot soon because I feel like I'm about to start. All of this makes me so mad. The ignorance is astounding.

Well, thanks for letting me vent. I just wish that one day, everyone will finally know how bad this disease really is.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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mcjane
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Date Joined Jun 2009
Total Posts : 285
   Posted 9/17/2009 10:45 PM (GMT -7)   
Can you borrow a wheel chair...might soften up your doc, but I doubt it. :-)

I think your doctor is being unethical. A Pap test should be your decision when you feel up to it, not hers. Don't like seeing you being pushed around.

Tell her picc line first and when your feeling better...Pap Smear.

CajunGrl
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   Posted 9/17/2009 10:52 PM (GMT -7)   
The only thing I can think of for her making me go in is that there's some law or rule she has to follow with the Depo shot. They haven't told me anything though other that I won't have my shot refilled unless I go in. It's weird because she usually calls me back. I don't think her nurse told her everything I said.

I will have a talk with her when I go in. I don't want to be ugly though because she does let my husband give me the shot.

I guess it will just be one more uncomfortable thing I have to go through.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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Dagger
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   Posted 9/17/2009 11:11 PM (GMT -7)   
Many gyns won't let you continue BCP or Depo shots without an annual exam, including a pap. It's for your protection so that you get regular screenings. You may be able to get the pap every other year as long as you've had a few in a row that were normal. She's also covering her butt so you can't turn around and sue her if you end up with cancer and she hadn't screened you.

Some docs think there is a connection between endometriosis and Lyme Disease. With your symptoms, it's possible you have endo and, unfortunately, you won't get any relief until you have surgery with a good endo specialist.

mcjane
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Date Joined Jun 2009
Total Posts : 285
   Posted 9/17/2009 11:44 PM (GMT -7)   
Had no idea what a depo shot was, still don't so spoke out of turn.

I thought it had something to do with Lyme and couldn't make the connection with a Pap test.

My last mammogram was 2005, had one a few weeks ago and found I have breast cancer so don't skip that one either.

Jane

CajunGrl
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Date Joined Mar 2009
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   Posted 9/17/2009 11:52 PM (GMT -7)   
Thanks for replying Dagger. That makes alot of sense. I used to do my pap smears every year, on time. I was always on top of that until I got sick. I guess I am just frustrated with the communication part. I would have understood if her nurse would have explained things. Telling me to "come in for a pap smear or you won't get your shot", is not a great way to communicate.

McJane: Im so terribly sorry about the cancer. I found a small lump myself that I will have checked while I'm there. It's under my breast, right in the crease. It may just be a swollem gland. Its not very big and doesn't seem to hurt. I'm usually on top of that too. This disease gets in the way of everything!

What are they planning on doing about the cancer?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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Traveler
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Date Joined May 2007
Total Posts : 35859
   Posted 9/18/2009 8:12 AM (GMT -7)   
Oh wow McJane!
I'm so sorry to hear about the cancer. My heart & prayers go out to you.

On another note - last time I had a colonoscopy I was soooo afraid of the pain it would create for me that I made the doc doing the procedure swear that I would get ENOUGH sleepy juice that I wouldn't be aware of what was going on & enough pain meds to carry me for 2 full days!

I know that doesn't sound like a good thing to do, but it taught me a valuable lesson - the GOOD docs listen & accommodate their patients as best as they can.

We are the ones left to live with whatever pain is created & I for one feel I'm in enough pain without having docs thinking I'm some kind of wimp who over-exaggerates everything!

I also have become a bit mouthy to those docs & hospitals who refuse to believe me. It's part of an attitude that docs & hospitals all over the country have helped to create in me.

Good luck CG with getting the help you need!!
- Traveler
"Conditions": Lyme Disease, STARI, RMSF, Hashimoto's Thyroiditis, Neuro LD, FM, Chronic/acute EBV, IBS-C, Diverticulosis (& "itis") & now Lyme arthritis (?).


Jeminij
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   Posted 9/18/2009 11:22 AM (GMT -7)   
Most gyn's won't continue to treat unless you get your annual exam. I rememeber when I was first pregnant and was so sick I couldn't even stand up. Of course, I HAD to see an ob, but it was the last thing I wanted to do. I let them know how sick I was and when I came in in a wheelchair they hadn't really seen that before. They let me sit in the back room so I wouldn't have to be "sick" in the waiting room. And on my first visit they couldn't do a pap because I was just too sick and he told me that in order for him to be my doctor I had to have it done. I went in 2 weeks later and had it done, but boy it wasn't easy dragging myself to those appointments. I thought I was going to die every single time.
 
The good part is just doing it and getting it over with then no worries for another entire year. If your doc knows how sick you are, they may work with you by getting you the first appointment so you don't have to wait or letting you wait in another room where you can lie down if you have to. I am sure they will accomodate you. I know they had to with me.
 
 

CajunGrl
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Date Joined Mar 2009
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   Posted 9/18/2009 4:23 PM (GMT -7)   
Traveler and Jeminij,

I agree that I should be accomodated. I wish they would have told me this at the beginning of the year instead of "forcing" me now. I felt better at the beginning of the year.

I called again today to see if she could put if off a little longer....until I at least feel better, and I'll try to go before December of this year. Well, she wasn't in again today so I have to wait until Monday.

If I have to go in, I will. I just wish I could wait a little longer though. The pain is terrible right now. I can't imagine laying on the hard table.

Thanks for all of the replies.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


alone&scared
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Date Joined Sep 2009
Total Posts : 177
   Posted 9/18/2009 5:30 PM (GMT -7)   
I am so sorry. It is crap. I think this was already said, but most of them do HAVE to give you a pap every year or they won't give you b/c. This way, they can check to make sure you don't have the beginnings of cervical cancer, so that protects you. ANd, it protects them so that if they gave you b/c anyway, they can get malpratice for not making you get a pap when you are "sexually active." Heck, even when you aren't. I had to get surgery three weeks ago and they did a pregnancy test. I was so freaking mad because I havent had sex in a year. But, it is because of the people who lie about it and then sue when their baby is hurt.
But, speaking of not being accomodating. I applied for Disability in March. Not even for this, because I didn't know yet what was going on. I applied because my panic attacks were so bad that I could not leave the house. Agoraphobia is what they call it. It is when you cannot leave your house. So, what did I have to do for disability? GO to their doctors. Yep. And if you didn't go then they automatically denied you. ***? So, by going (which I had to do) it "proved" to them that I am able to leave the house. SO, that fact that I was heavily medicated and couldn't have stayed awake any longer than the testing took did not matter at all.
I just got the denial letter the other day. So angry and frustrated. They said that I was perfectly able to do something less "mentally challenging". Oh, so I am stupid now. Lol.
People dont' understand any kind of sickness or disabilty unless they have it. Or, at least that is what it seems. I get no sympathy either. On top of the not being able to walk, pain, nausea, weakness, rage, etc. I get the anxiety and depression as well. Good fun.
So, anyway, I am so sorry that you have to go in there. Just make sure when you go in there that you ask her/him if you can get them every 2 or 3 years. If you only have 1 sexual partner with no history of sexually transmitted disease then they should be able to do that for you. At least, I hope so!

CajunGrl
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Date Joined Mar 2009
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   Posted 9/18/2009 5:55 PM (GMT -7)   
alone&scared,

Thanks for the advice! I will definitely ask about having them done every 2-3 years. That would help me out a whole lot. I haven't had a pap smear since being on the Depo shot(birth control), so I see where she is coming from BUT, like I said, I wish they would have told me this at the beginning of the year when my pain level wasn't so bad. Ugh! Anyway, I guess that's life.

I filed for disabillity twice and was denied both times. I don't even remember what the first resin for denial was but I too had to go see their doctors. The second time I was told that my husband made too much, lol. I mean, it's sad. Why was I working in the first place if we had enough money? It's never ending I tell you. I definitely understand how you feel.

How have you been lately?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


alone&scared
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Date Joined Sep 2009
Total Posts : 177
   Posted 9/18/2009 6:21 PM (GMT -7)   
Yeah, your husband's income should have no bearing whatsoever on you. I mean, you could still be working if you weren't sick. It is so stupid.
Yes, it would have been nice of your doctor to tell you this prior to you running out of shots. Sometimes you wonder what they do all day:) No, I know that they are busy, but that is what the office staff is for, ya know?
I just had surgery a couple of weeks ago. It was exploratory on my female parts along with other organs. They found endometriosis and cut it out. I felt freaking great for like a week after. Now my stomach and female organs hurt so bad I can hardly stand it. It hurts worse than before and this was supposed to take the pain away:( She wants me to go to physical therapy (which is weird. Maybe they will make me do kegals and count.LOL) and then if that doesnt' work I can take shots that put me into menopause (only while I am on the meds supposedly) along with birth control pills. I still am not sure why I would have to be on the birth control pills if I was technically in menopause. I guess I will have to ask.
But, I can def sympathize with the horrible periods. I haven't had one that lasted less than 3 weeks since I wasn't having them at all (last year). But, even when I wasn't having them, I still had pms, cramps, bloating, etc. So very weird.
I wonder if lyme makes it worse? I don't know. But, had i known that I would feel worse after this surgery then I probably would have dealt with the pain I had before. I don't blame my doctor AT ALL> I mean, she did what she was supposed to do. There is something else keeping me from getting better.
How do you deal with the pain on the days when it is unbearable? I just can't figure it out!

CajunGrl
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Date Joined Mar 2009
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   Posted 9/18/2009 6:39 PM (GMT -7)   
alone&scared,

lol about kegals and counting! Too funny!

I wonder if the Depo shot wouldn't help you instead of going into menapause? I had cysts and fibroids and I am now relieved of that pain every month since being on the shot. Maybe ask your doctor about it.

Lyme is known to make your menstrual cycle worse. I think most of us here had worsening menstrual cycles.

I take pain pills to get through the pain. It just takes the edge off though and doesn't help at all when I'm in a Lyme cycle. My pain is much worse every month for a week and nothing relieves it. I think this is when I cry the most, lol. I use a eucolyptus natural bath solution that helps a little. It relaxes my muscles and helps the soreness and pain but doesn't seem to help the pain that feels like it's in my bones<sigh>.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Dagger
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Date Joined Apr 2008
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   Posted 9/18/2009 8:45 PM (GMT -7)   
Alone & scared,
It can take a few months for the pain to go away after surgery. The spots where they removed the endo are raw and still healing. Your first few periods may even be worse than usual due to the stress from the surgery. The physical therapy is for pelvic floor disorders. After years of pain, some women's muscles stay in spasm and their pain continues. The PT helps to relax the muscles and hopefully make the pain disappear. If your doc is recommending Lupron, do a lot of research before you take it. It has a lot of side affects and some are very nasty and don't go away when you stop the meds. A stroke or fibromyalgia won't improve your quality of life. My surgeon said he'd never give Lupron to a woman with a history of Lyme because of its affects on the immune system.

I've never understood why a doc would give you a med to block your hormones (Lupron) and then give you back those same hormones (birth control pills).

The pregnancy test is to protect you and your doc. I was about 19 weeks pregnant and didn't know it. I had regular periods and was using birth control very carefully. I was only two weeks late and took a home test and couldn't believe the results. A few days later I found out I was 19 weeks pregnant, not 4 weeks. I had no symptoms of pregnancy and no reason to believe I was pregnant.

Dagger
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Date Joined Apr 2008
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   Posted 9/18/2009 9:03 PM (GMT -7)   
Cajungrl,
I agree, your doc can be a bit more understanding and work with you. She can, and should, let you schedule the appointment for the time in your cycle when your pain is reduced. Explain this and she'll probably be fine with it. If not, find a doc that will help you, not hurt you.

Take control of your visit. Sit in the chair until the doc needs you to lay down. You can sit comfortably and talk to the doc until she has everything ready for the actual exam. They can take your vitals and ask all the questions before you lie down. Lay on your side until the exam if that is more comfortable. I had a friend that always brought a blanket to cover herself with while she waited.

I refuse to sit naked wearing only a paper sheet so I always wear an oversized T-shirt that I can lift so the doc has access. I had a doc ask me if I had understood the nurse's instructions and I told him that I preferred to be comfortable and I'd wear the paper sheet if he would. I'm paying them so they can be inconvenienced by the extra 2 seconds it takes to lift my shirt. Decide what will make this visit a smidgen more comfortable and insist on it. Sometimes it's really fun to watch the look on the doc's face when they see that you don't think they are supermen.

mcjane
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Date Joined Jun 2009
Total Posts : 285
   Posted 9/18/2009 9:20 PM (GMT -7)   
Cajun & Traveler, everyone....here's what's going on so far.

Went in for a mammogram with a friend Roxanne who also had a mammogram and was asked to stay for more pictures and see the doc. She asked if I would stay for a core and a needle biopsy with ultrasound. Said yes. It hurt....! even though she deadned the site.
I asked her if I had cancer and she said yes...has seen enough of them to know from a mammogram even before biopsy results. she was right. Called a HER2-NEU, IDC (invasive ductive cancer) 3.7mm
left breast.

So far had a bone scan with contrast...negative (thank God) xray lungs clear, MRI with and without contrast positive with probable lymph node involvment. Thursday another biopsy, lymph node, results will be in Monday. Four blood tests. Will have a lumpectomy and breast repair and when healed a CT scan (for radiation beam placement and tattoo markings) (My friend Roxanne said she will see me through every step of the way and insists on taking me for all my radiation treatments). six weeks five days a week radiation. Saw a plastic surgeon for breast repair and lift to be done same time as lumpectomy. Saw a cardiologist to clear me for surgery...like I had a choice!!! On Monday will finally see my oncologist Marisa Weiss. Will also probably have chemo, Herceptin
Will have surgery within the next three weeks, overnight stay in the hospital.

Just about recovered from Lyme I feel great right now and the radiation and chemo will put me right back to how I felt with Lyme same sort of fatigue only this time with nausea and pain. Never saw any of this coming.

Previous ultrasound was suspicious for thyroid cancer had a biopsy the same day I had the breast biopsy, Thyroid came back negative. Go figure.

Have been posting on the breast cancer forum and what a great help it has been. LIke here everyone is so nice and a special thanks to Tavish & Barkyboys.

As bad as this is going to be with the worst to come I would rather have cancer than 2nd or 3rd stage Lyme. I feel so bad that so many members are going through late stage Lyme, Hell on Earth. My case was mild in comparison and still it was the sickest I've ever been and not even close to what others endured with chronic LD.

My prayers are for all of you to at least have one good day now and then and most of all that someday this disease will be taken more seriously by all doctors and a cure and reliable treatment will soon be here.

Jane

CajunGrl
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Date Joined Mar 2009
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   Posted 9/18/2009 10:01 PM (GMT -7)   
Dagger,

lol Great tips. I am seriously considering wearing the big T-shirt to be comfortable. I hate those stupid paper robes. Most of the time, they don't fit anyway. I guess there's no fat people in this world, lol.

I will also do what you said and sit in a chair until it's time to lie down.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


CajunGrl
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Date Joined Mar 2009
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   Posted 9/18/2009 10:05 PM (GMT -7)   
McJane,

Wow hun. That is so scary. You seem so tough though. I'm sure a positive attitude makes a huge difference. It looks like you have everything figured out. Please come back and let us know how everthing is going. I'm truly sorry you have to go through this especially after dealing with Lyme.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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RottenDog
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Date Joined Apr 2009
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   Posted 9/19/2009 1:03 AM (GMT -7)   
McJane,

your in my prayers, i'm so sorry you have to go thru this. i'm at a lose for words here, it brings tears to my eyes. and hurts my heart to know what your about to go thru.

its a blessing you have someone who will be with you through out this. i pray you have a fast and full recovery :)
   RD
 
still looking for answers.
 
Remember that advice is free, its your choice what you do with it.  :)


mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 9/19/2009 6:43 AM (GMT -7)   
Thanks Cajun & Rottendog for your concern, prayers and the very nice things you say that makes one feel you are not alone.
 
I care very deeply for everyone who posts on any HW forum and our strength is in how we love, share experiences, support and give each other hope.
 
Jane

alone&scared
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Date Joined Sep 2009
Total Posts : 177
   Posted 9/19/2009 1:27 PM (GMT -7)   
CG & Dagger. Thanks so much for all of the info! Wow!
Dagger, I already have Fibromyalgia, so that's one thing I don't have to worry about getting. lol. But, yeah, I don't want to have a stroke. I am only 30, but they used to say that you shouldn't take b/c or hormones after 30 because the risks are too high. Now they say 35, but I'm not convinced. I think I will give the physical therapy a try.
CG-I will ask my dr about the depo. I've been on oral b/c for a very long time to make my periods regular and keep my cysts from getting too big. It obviously didn't help with the endometriosis, but the depo might. I tell you girls, when it rains it freakin pours! I am so confused and foggy right now I have trouble remembering to flush the toilet and I am supposed to figure all of this stuff out? I don't think so!
McJane...I am so sorry that you are going through all of this. I will keep you (and all of you) in my prayers!

mcjane
Regular Member


Date Joined Jun 2009
Total Posts : 285
   Posted 9/19/2009 3:11 PM (GMT -7)   
alone & scared

Yeah I'm sorry too but you know what since I feel so good I think I'm in denial. I wake up and think It must have been a dream. Kind of weird and with all the testing and doctors I've seen I know it's true and right now, today, I'm not scared at all I'm more curious as to what it's going to be like after surgery.
From what I'm reading some have a rough time with chemo and radiation others don't. I plan on being one of the "others don't"

I still and always will say I would rather have breast cancer than Lyme Disease anyday and I really mean that. Keeping in mind that I was only in late 1st stage and was so misearable and now 99% cured maybe even 100%
So I can sort of imagine what others with chronic LD are going through and are looking for the light at the end of the tunnel and not finding it.
With breast cancer I'll find it and have positive feelings while the thought of Lyme terrifies me.

Will also say that with cancer there is so much testing, different doctors, treatments, medications, groups, counceling, funding even plastic surgery that you actually feel pampered. There is even special parking at hospitals where it's free or a minimal cost for cancer patients only.

While with Lyme I hear so many stories about doctors telling patients not to come back can't help you, you need a psyc, your not sick it's all in your head, etc, etc.
Then you have to find a LLMD and insurance will not cover treatment.
Breaks my heart.

CajunGrl
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Date Joined Mar 2009
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   Posted 9/19/2009 5:20 PM (GMT -7)   
alone&scared,

Just so you know, the Depo shot is birth control. The reason I take it is because it completely stops my period so I don't hurt at all with the cysts and fibroids I have. I had all of the symptoms of endometriosis. My gyno thought I had it but I never pursued it further. If I did have it, I have no more pain since being on the Depo shot.

I do want to say that the shot can raise your B/P and can sometimes mess with your emotions. I had that and alot of sweating for the first few months of taking the shot. It has gotten better now though.

I don't want anyone to think it's a miracle drug because there may be a few side effects that come along with it.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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Post Edited (CajunGrl) : 9/19/2009 6:30:08 PM (GMT-6)


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 9/19/2009 10:25 PM (GMT -7)   
You know, I've been thinking about all of this again and I am still angry. My shot was schedualed for Friday for three months now. I should have been able to take my shot! Now, I'm hurting really bad in my stomach and back and I'm about to start. This is just ridiculous! Why not give me my shot and have me go in later? They could have "made" me go in the end of last year! THEY waited over a year before they finally told me why I had to go in. Now, I willbe in even more pain because I'm about to start!!

When I go in, I WILL let her know how I feel. I won't be ugly but I will be firm. This could have been avoided.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


alone&scared
Regular Member


Date Joined Sep 2009
Total Posts : 177
   Posted 9/20/2009 9:22 PM (GMT -7)   
You are 100% right. When they scheduled you for your next shot you should have been told "hey, you have to have your pap test before we can give you your next one." I would be SUPER angry too if I were you. And, since it was their error, you should have been able to get this shot and then get your pap before your next shot. Definitely let her know how you feel!
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