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marta
10-31-2010, 08:13 AM
OK, my turn to have a little freak out. I've been off the site for a while as I've been feeling quite off. I hate bugging my doctor as I know he's busy, and I'm always afraid that I'm overreacting. Well after a week or so of having an internal debate whether or not to contact him, and feeling progressively worse every day, I finally decided to send him a fax yesterday (at our last appointment on the 20th of October, he told me to contact him if I have any problems and he'd get back to me as soon as possible).

I wanted to make it as easy as possible for him to give me some direction (and that's all I wanted, direction, I don't want to be molly coddled, or pampered, just want direction cuz I'm still a rookie in this land of Wegener's) so I sent him a very well organized fax outlining in point form what my symptoms are, what the variables that could be causing them are, what I've done so far to try and alleviate the symptoms, and a highlight of my ESR on my bloodwork. At our appointment (I was already feeling off at that time) my ESR was at 28. He told me that that's just one above normal (for women normal is your age plus 10 divided by 2, which puts me at 27). I took that at face value, but when I got home I noticed that compared to where my ESR has been since early July, the 28 was a huge spike. I was hoovering between 7 and 12 and then suddenly on the 15th October it went to 28. I made a note of that in the fax as well. Then I mentioned that I appreciate that he's busy and I hate having to contact him, but I would appreciate some feedback on whether I'm doing the right thing with the pred, or if I should follow up on this and see if we need to go deeper. Just some guidance.

Well!!! I was trying to have a nap in the afternoon (because my headaches are so bad at night that I can't sleep) and I got a phone call from him. Half groggy, and in a substantial amount of pain I answered and totally got chastised for contacting him with such insignificant symptoms. (Severe headache, earache, sore sinuses and nose, sore behind my eyes, sore teeth, shortness of breath, sore ribs and chest and some joint pain in my hips, ankles and knees) He asked me which of my symptoms was the most concerning, and I told him it was my headache. He then told me that a headache is not part of Wegener's and I shouldn't be bothering him with such things because he's a busy man. I told him that a headache was the biggest symptom I experienced before diagnosis and it's what made me search out for help repeatedly. But apparently it's not in the textbooks. I have not been made to feel like this since I was a kid and got in trouble from my parents. I felt 3 inches tall and could hardly keep my tears from showing through in my voice. It was like waking up and getting slapped in the face.... by the guy who's supposed to be the one who's there to help you out. I asked him what he meant when he told me that I can call him if I have any problems and he said yeah, but not for symptoms of a common cold. The symptoms of a common cold X 100 was what put me in the hospital in the first place and what made a number of doctors blow me off. I'm glad he wasn't on my diagnostic team in the first place.

I was sooooo choked yesterday, I felt like I could spit fire. I've lost quite a bit of respect and trust for the guy. Bri was trying to comfort me by telling me not to put so much weight into one phone call... and granted the guy might have had a bad day, but I feel it's bigger than just the phone call.

So after beeing madder than I have been in many many years, I spent 3 hours last night going through every rheumatologist, nephrologist and internist in Alberta to see what their specialty and/or interests are and then cross referenced it with what patients say about them. I think I found someone in Calgary (5.5. hours away) who's a rheumy specializing in vasculitis and I'll see my GP on Monday to see if I can get a refferal and get that ball rolling.

I know everything happens for a reason and this will probably turn out to be very good in the long run, but boy did it come with some very nasty feelings, and in the end I got absolutely NOTHING from him in terms of advice or guidance. He basically called me to give me ****.

How's that for excellent care?

There. I've had my vent rant, and I'm sorry to spill it on you guys, but if there's anyone on this planet who knows how I'm feeling I know it's you and it makes me even more determined to put our book together so that docs who think they know WG might be a little more enlightened as to what WG really is, and how different it is for everyone, and how important it is to look at each case individually.

I'm stopping now, cuz I can go on for a while as I'm still very angry at the whole experience.

ARRRRGHHH!!

staystronglivelong
10-31-2010, 08:27 AM
Hi Marta

Sorry you are suffering so much and to top it off having such disgraceful treatment from the one you ought to be able to rely on to help you.

My husband's main symptom was the severe headaches - he had other symptoms but I think the headaches in the night were what told us - hang on there must be something badly wrong and kept seeking help from the doctors because of it. I think if it hadn't been for those headaches then we might not have pushed so hard for the doctors to do something and got diagnosed so quickly.

Hope you can find a better Rheumy because that one sounds like an absolute a$%*hole. How can any experienced wegs doc say headaches aren't down to the wegs?

You are an amazing lady Marta and I want to send you a big hug. Will be ordering some stuff off your zazzle site when I get round to it. Hope you feel better soon. :hug3:

pberggren1
10-31-2010, 08:38 AM
I so feel for you Marta. My previous Rheumy in Saskatoon, Janet Markland, did almost the same thing to me twice. Most of the time she made me feel as if I was taking up her time and was disturbing her. She told me to contact her by e-mail but that never worked either because she would barely ever reply and when she did she would only answer a couple of my questions or concerns and would not go into detail.

What is the name of the Rheumy in Calgary? Dorothy Spence in Calgary is the contact person for that area. Her phone number is: 403-938-7600. And her e-mail is: [email protected]. She is very nice. I spent a couple of nights at their place back in 2005 to see an ENT that she saw by the name of Borys Hoshowsky. I liked him.

God Bless,
Phil

JanW
10-31-2010, 09:20 AM
Marta -- that's a horrible experience, and I am sorry that you live so far away from a specialist who may be able to help you. A doctor should take the problems of a WG patient seriously at all times...I would certainly be calling (and getting an answer from) my rheumy if I had a bad headache, particularly if it is what put you in the hospital in the first place.

Take care.

malin
10-31-2010, 10:50 AM
Ugh! That is so disgusting! The guy should be ashamed to call himself a doctor!

My rheumy is the complete opposite of your' doc :p She will overreact as soon as I sneeze! I have to tell HER that it's nothing more than a cold at times! lol

It just goes to show how different rheumys can be and how different they treat us, some over do it and some do absolutely nothing at all! :/

marta
10-31-2010, 12:13 PM
I love you guys. Thanks. It's nice to hear that I'm not over reacting, but I knew that we'd be on the same page.

Staystronglivelong, it was the same for me... if the headaches weren't as nutty at the start I probably would have sucked it up and not got diagnosed. My headaches at the start were absolutely insane. Thanks!!
Hey Phil, the doc I found in Calgary is Dr. Stephen Edworthy. He sounds awesome, hopefully he's taking new patients. I'll follow up on all of that on Monday and hopefully the stars align just right. Gracias Amigo.
Jan, I'm totally with you. That's what I thought too, and that's why I was so blown away by the responce.
Malin, can you share your doc? ha ha, it would be an awesome trip everytime I went to see her. She sounds wonderful. It would be great to have someone looking out for you when you're still trying to figure this out. Hopefully my search for a good one is fruitful and just around the corner.

Thanks friends. You're the best.

Psyborg
10-31-2010, 12:30 PM
That's pretty deplorable treatment. What is it about some doctors that makes them think they are better than the rest of us? I get it, they are generally smart guys, but that doesn't mean everyone else are stupid. Especially given that this is such an obscure disease, they should just no better.

Sangye
10-31-2010, 12:57 PM
Marta, I know what that's like, having had numerous docs treat me like that. Your symptoms are NOT trivial, and that list has me pretty concerned, actually. Please make every effort to see a new rheumy ASAP, okay? Wegs doesn't wait.

Meanwhile, hugs to you. Better to find our your doc is not the right one before you're in a full-blown crisis. :hug2:

marta
10-31-2010, 02:17 PM
Psyborg, I concur. I haven't had a reason to think otherwise of this guy before, but it really took me off guard. Like Brian said, he might have had a bad day and who knows what was going on in his life, but if he took the time to call me he could have been a little more helpful instead of using a rare opportunity to communicate with me to ream me out. Oh well, live and learn. He was appointed to me when I was in hospital and I haven't had a reason to look elsewhere, but now I do and who knows, I might find Dr. Perfect from this experience.

Sangye, I promise to get on it first thing Monday morning. When I get something in my head, it's as good as done. I'm a stubborn Bulgarian. ha ha. My symptoms could easily be a cold (one of the variables that I put in my letter, along with pred wean, flu shot aftereffects, flare, or changeover from cyclo to mtx - although the last one is only days old and my symptoms have been around for a couple of weeks at least) but what I was hoping for was a professional to look at it all and give me some feedback. Yeah, no kidding better now than when I really really need him.

Onward and forward.

Sangye
10-31-2010, 02:40 PM
LOL Your persistence will pay off with Wegs.

I wouldn't be so fast to pass this off as a cold. A cold is not going to raise your ESR like that, and it won't give you joint pain. I also doubt that it would give you the bad headaches again. When was your flu shot? I don't remember who it was, but someone in our group said a flu shot brought them out of remission into a full-blown Wegs flare.

marta
10-31-2010, 03:27 PM
Flu shot was on October 14 and my blood test with the ESRspike was October 15 ( I just had to look at my calendar to double check) I'm also sportin' a bladder infection - I know those pretty well, and will have to wait for Monday to get some antibiotics to take care of that bad boy. That's really frightening about flu shots triggering a full-blown flare. I've never - NEVER -had them before and they strongly recommended that I get them when I left the hospital in May. It made sense to me despite the fact that I've never been a big fan of the idea. Oh well, we'll figure it out and things will get better again in no time, I'm certain. If I have a flare then I have a flare. Despite the fact that I don't like the idea much, I know that upping the meds will take care of it and I'm OK with that, what I don't like is letting it smolder and cause damage without me knowing if it is active.

Monday, Monday...... ta daa, ta di da da...

me2
10-31-2010, 04:11 PM
Marta, I'm so sorry recieved that kind of treatment. It is absolutly outrageous - and thats even if you HAVE cold. You should not have been talked to that way. Unfortunatly I have had similar experience with some doctors so I know how it feels. The worst of it is is that they are hitting you when you are down. I'm very impressed with the great questions you came up with and the way you dealt with it.
And YES headaches can be from WG . Good grief. I have suffered horrible headaches many times over the years. No good doc would dismiss that WITHOUT talking it through with you and TRYING to determine the cause. It is one thing to make a mistake about symptoms (that happens to the best and I never blame doc if they are at least taking them seriously and trying) but to be so dismissive and treat you so harsh when you are sick (doesn't matter from what) is just unconscionable.
I'm glad to hear that it sounds like you are the track of someone better able to deal with WG. Your doc might be a good guy, might be a good doc, but it doesn't sound to me like he is a good WG doc.
I wish you speedy relief and a quick course correction. Kirk
PS As a long time WG patient I keep antibiotics on hand just for those weekend binds or other delays in getting meds. I went on a trip to China once and my doc loaded me up with meds that I could treat myself with in case I got in trouble. Lots of prednisone (which I unfortunatly ended up needing) and antibiotics (which I didn't need). To this day I keep a box of large amounts of spare anything I might want to take. It gets used fairly frequently.

elephant
10-31-2010, 04:57 PM
Marta, so glad you are moving on to another doctor, the symtoms you mentioned sound like a wegs flare to me. I had very bad headache before diagnosis and even had a ton on MRI because of it. Take this chance to find the right doctor, and please get in soon. You are a strong person and we will all help you get through this. Don't ever give up!

Jack
10-31-2010, 08:57 PM
I can only agree with the others posting here - terrible treatment and you must find someone else as soon as possible. I don't know where he is coming from with the idea that head aches are not a Wegener's symptom. Crippling head aches were my first symptom!

By the way, I've always had the flu shots as posted previously and never had any reaction. This year's did not even leave a bruised feeling.

DEE
10-31-2010, 10:03 PM
Marta he s a @@@@@@ headache like Jack one of my first symptoms to; just about to have flu jab i was fine last year and hubby was a bit off for a few days
just had the cinversation about him having it again this year although his will have to wait hes just had man cold
i hope you get sorted out soon please take care of you DEEx :hug3::hug2::hug1:

freakyschizogirl
10-31-2010, 11:43 PM
Hugs Marta.

I know doctors are highly trained but they should be taught how to respond to patients concerns. Instead of dismissing you like that. I would be upset too. You're not a child.

Malin i want your Rheumy. lol.

Look for that special doctor who will look after you,

Good luck

x x x

Sangye
11-01-2010, 12:11 AM
Me2, make sure to check the expiration dates on your antibiotics. Expired Tetracyclines can cause the condition I have-- elevated intracranial pressure (pseudotumor cerebri). You definitely don't want that! Other expired antibiotics or other drugs can cause major troubles.

Malin, a doc who overreacts can be just as dangerous as one who underreacts. Overtreatment is a big problem with Wegs. I still recommend you find a Wegs specialist to guide your care.

One note about vaccines... They can cause immediate reactions, for sure. But they can also cause reactions that wouldn't be obviously linked to them. For example many of the ingredients are carcinogens. That wouldn't cause cancer immediately. Also, the same ingredients are known to disrupt the immune system. That could take months or even years to show up. I believe the huge number of vaccinations I got in the Peace Corps contributed to my developing Wegs. My immune system was never as robust after that, even though Wegs didn't show up for 17 years. Many autoimmune diseases take that long to develop. I think I staved it off for so long because I was doing so much to strengthen my body. Just throwing that out there, because many people think if they don't have an obvious, immediate reaction to a shot that everything is fine.

JanW
11-01-2010, 01:42 AM
I do have to say that if Malin's rheumy is seeing her every time that she has a bad cold, and not doing something like upping her pred or immunosuppressant, that's not a problem in my view. A doc has to allow for a WG patient's inclination to underreport symptoms, especially if they may be in denial about having a flare, and, well, better safe that sorry.

Sangye
11-01-2010, 01:57 AM
My concern is about the doc overtreating and also that Malin is in the position of guiding care. Wegs comes in many shades of grey and she could dismiss symptoms. We are also quite good at denial--every one of us!:rolleyes1:

eileenv
11-01-2010, 02:37 AM
Hi Marta, I was appalled by the action of that rheumy it what totally not called for, goodness me you had all those symptoms. as you say thing somtimes happen for a reason, althrough you didn't want to start feeling this unwell to find out. I hope it all goes well in search for a new rheumy
I know you will keep us posted, when you mentioned your esr, that brought me back to what my rheumy said to me the other week, my esr54 and crp 52 and he said ah well they are always high. Marta i hope this message finds you feeling a lot better don't waste another thought on horrid man.
:hug1:

me2
11-01-2010, 03:22 AM
Wow, thanks for the tip on the antibiotics Sangye. I wasn't aware of that. I try and rotate my stock but I will have to take extra diligence on those things that expire- lest I hit my own expiration date.

I know what you are saying Sangye about over and under reaction and I'm sure you are not missing the attitude of Marta's doc . That to me was what was so offensive. WG is very difficult to deal with and the 'right' choices are not always made. I accept that. I forgive my docs their humanity but first they have to show they have some by not being rude and dismissive. We weggies are a pretty easy bunch to talk to as far as I have seen and are as deserving of respect and compassion as the next crazy auto-immune person.

WG requires an unusally high level of docs being able to listen to their patients. Many docs don't have what it takes. In my experience they can't be taught either and when I run into it... I run away from it and find a doc that can listen. Thats all I want is to really be listended to. Then we cook up a plan. Its really not that hard for those with the apptitude- just a touch of compassion, humility and open mindedness. If they have, or develop a deficiency in one of these then the patient suffers.
I have been able to defibrilate my doc with a touch of anger when he starts to pass out on one of these qualities but doing that won't work a long time.

drz
11-01-2010, 11:15 AM
I love you guys. Thanks. It's nice to hear that I'm not over reacting, but I knew that we'd be on the same page.

.

I think you are lucky to find out the doctor's true character before you really needed their care for an even more serious situation. Hopefully you will find a competent doctor that remembers patient care is what they are supposed to provide.

jola57
11-01-2010, 06:38 PM
Marta. I'm speechless. What gall to call you up just to ream you out.

marta
11-02-2010, 05:48 AM
Thanks guys. I'm so glad I've found you and have you to lean on when I'm feeling poopy. I'm still feeling crappy, my esr is now at 35 - after being at 11 max throughout the entire summer, and my head is killing me. I went to see the local doc today but she's off (I'm also sportin' a UTI - woo hooo) so I'll see her on Wednesday to do the referall. I also see my other GP that I've been going to since the get go on Friday and see what she has to say. I'm OK with having to go back up to the big guns if we have to, what I don't like is the prospect of letting it smoulder and do damage underneath while we sit here and guess.

Am I correct in my assumption that you know you're flaring based on a combination of symptoms (as per the patient) and blod/urine analysis? If that's the case that I don't know why buddy would be sitting on his hands. Oh well. I'll figure it out. I'm going to take some decongestant and see if that helps the headaches a bit.

On a much lighter note... Last night was Halloween and I sat at my door (I took out the window part of our screen door) and sat inside reading my book with a light above me and the rest of the house all dark. I put on a witche's hat and painted my face green, put on a blue bunny scarf, covered myself with a blanket so I don't get cold, and the effect was hillarious. Kids were genuinely spooked when they came up to me. It was hillarious the effectiveness of such minimalist effort. " How much is that Weggie in the Window? - woof woof" I did look scarry. Here's a glimpse. Hana dressed as a witch too, so here's a little mother daughter witch action...

774

Take care everyone and thanks so much for the support. It's interesting to see how many have headaches as their main, nasty, early sypmptom. It gives me ammo.

pberggren1
11-02-2010, 06:32 AM
Marta, you are learning very well. With an ESR that has climbed like that in a short time with nose and sinus pain and bad headaches it may well be a flare. But it could be a sinus infection too. I have learned to keep track of my ESR, CRP, White cell count, Creatinine, and ANCA. These results, along with symptoms, allows me to better gauge what is going on. For me the C-ANCA is a very reliable marker for disease activity. When I am in remission it is usually below 4 and sometimes 0, but when I am flaring it spikes up to the 20's or higher. But I usually rely on my symptoms first to let me know what is going on and then if I am in doubt I look back to my blood work. It is a good idea that you get copies of your bood and urine results - good for you. I hope you can get to see this doc in Calgary right away. Let us know when you get to see him and maybe I could meet you there. There are some other Weggies in Calgary that I have talked to as well. You will know soon if this is a flare or not. Try and look back to when you were first sick and go over your symptoms again and see how they progressed and this will probably give you a better idea of what is going on.

DEE
11-02-2010, 07:10 AM
hi marta
you have my sympathy on the headache front it was one of my major problems when i first flared it got to the stage when i could not let anyone touch it'
imuran not holding things down at mo and have been nursing a sore head again this weekend waiting for blood results from today before wg consult decideds what to do
when i have the headache i sometimes feel dizzy too
and does not always affect my eyes but i know this might silly but i get a buzzing noise !!!
hope things work out for you DEEx

elephant
11-02-2010, 10:27 PM
Dee, you don't sound good. Let your doctor know about the dizziness. Yes, a bad/severe headache that doesn't go away despite decongestants and antibiotics is a good indicator that the WG is behind this. Been through this many times.

JanW
11-02-2010, 11:45 PM
I agree with elephant. ESR is one of those numbers that rises slowly and decreases slowly, but C-reactive protein and platelet numbers are very good at showing changes in inflammatory response over short periods of time.

It takes months of treatment and discussion with your doctor to figure out whether P3 numbers and ANCA numbers will ever 'mean' anything to your particular case beyond their use in your original diagnosis. My P3 numbers started close to 100, and have now 'bounced around' as my doc says, in the 60s since the spring. Yet, in three months, if the current clinical (no symptoms) presentation holds, he will start reducing mtx with the goal of medication free remission.

Sangye
11-03-2010, 12:24 AM
Marta, I don't know how things work in Canada. I'm wondering if there's such a thing as an urgent referral. Your ESR and symptoms are disturbing.

Dee, I hope your Wegs doc gets things sorted quickly. I agree with Elephant--sounds like Wegs.

chrisTIn@
11-03-2010, 01:33 AM
...the effect was hillarious...
" How much is that Weggie in the Window? - woof woof" ... Here's a glimpse.
...here's a little mother daughter witch action...


774



After reading this, I became very curious.:biggrin1:
...onfortunately the link doesn´t work... :sad:

DEE
11-03-2010, 03:16 AM
Sangye , Elephant still waiting for blood results coming back my ESR creeping back up at 30 at last test and a few other markers to told to put Imuran up today at last wg consult and will go down to gp in the morning , my gp day off today would rather talk to him .

elephant
11-03-2010, 05:08 AM
Dee, keep plugging along. You are doing great and staying on top of your symptoms and little issues that come up. Thinking about you!

DEE
11-03-2010, 05:36 AM
life would have been easier if i had not had to ask the particular secertary i did , im sure there back but wont print because of doc day off !! even though he's ok about letting me have them :huh:
never mind another walk in the rain tomorrow will
let you know DEEx

Geoff
11-03-2010, 07:16 AM
Get your Hoodie on Dee and sort out that sec! Like you I get 'headaches' but they seem to be 'patchy' about my head, i.e they can move around, some times quite quickly like a shooting pain. Regarding the 'buzzing' effect, I suffer from tinitus which may be whats giving you grief. Good luck tomorrow.

DEE
11-03-2010, 07:46 AM
Thanks Geoff hoodie at the ready:mad1: she is the only person i have trouble with all the other staff are great but once she made her mind up there is no changing it !!!
I suffer from tinitus and wearing hearing aid helps the buzzing is slightly different its like when a florecent light buzzes if you know what i mean , not quiet lost the plot but only way i can
describe it and say that its not been to bad today
will post again tomorrow after i get the results from the dragon :thumbsup:

marta
11-03-2010, 08:29 AM
I write this from a hospital bed. It was a flare indeedie. Esr was 66 today and the headache incapasitated me last night. I am looking to my right as the morphine drip drip drips me into happy pain free land. So back on pred and cyclo, but I'm happy that finally we're on it. One of the benefits of small town is - holy cow you should see my big, bad, private room. I feel like I'm on an all inclusive holiday.

Thanks you all for your support and I'll chat when I get outta here.

eileenv
11-03-2010, 08:35 AM
Wishing you better Marta, sorry to hear that you had to suffer before anybody listens.

me2
11-03-2010, 08:40 AM
Marta, Its good to hear you are on track for the treatment you need. I'm sorry too that it was unnecessarily rough for you to get there.
You need rest and peace but part of me wants to ask if you could have someone call 'Dr Chewout' and let him know what a gross mistake he made and that his treatment of you was WAY below acceptable and it CAUSED needless suffering for you. These doctors need to hear this or they don't learn. Just a suggestion. Take good care of yourself and get well soon.

Psyborg
11-03-2010, 09:10 AM
You should make sure that stupid Doc knows that you know he screwed up.

pberggren1
11-03-2010, 09:10 AM
This flare came on sort of slow for you but also was kinda fast in a way as well. I hope they take good care of you at the hospital in Jasper. Who is directing your care right now? Who ordered the ctx? Is there a different Rhuemy involved in your care now? I am praying that you will be out soon and have a good recovery. My heart goes out to you. I wish I could be there. I foget, were you having any lung symptoms like coughing up mucus or blood or chest pains? Did they do an x-ray of head or chest? Sorry for all the questions, I am just worried for you being that other JERK of a Rheumy treated you lke that and should have seen this flare coming. I must say you need more frequent blood work: CRP, ESR, CBC with differential, Renal function, ANCA, urinalysis, Liver function panel, etc. I would say once a week until you are off the ctx would be good monitoring of blood and urine. My Wegs doc says that he does not like to keep patients on ctx for more than 3 months unless absolutely neccessary. He also likes to see the patient that is on ctx once a week and gives them his cell and home numbers just in case and wants to hear of any new or increasing symptoms. He is very anal about that. I know that you will not be able to see your Rheumy or main doc that often but if you could at least see your local GP once or twice a week and make her understand that when you need a doc she has to be ready to see you on a moments notice. Wegs can go from OK to disaterous in one day as you know full well now. If your new Rheumy or local GP wants to consult with my Wegs doc I am sure that he would be more that willing to look over your stuff and give his opinion. If you like I can ask him is he is willing to do this. I am sure he would be, he is very kind.

God Bless,
Phil

Jack
11-03-2010, 09:15 AM
You should have been receiving treatment before now. I trust you are going to be getting a new doctor?

elephant
11-03-2010, 09:53 AM
Marta, sorry you are in the hospital. Hope you feel better real soon. Let's know if you need anything, we are here for you always!:hug3:

chrisTIn@
11-03-2010, 11:52 AM
Hope you feel better soon! :thumbup:

marta
11-03-2010, 02:04 PM
Thanks guys. Phil I'll talk to you about your doc, a nurse here looked into it and there is a way to do it cross border. Wooohoooo.
Thanks everyone, I'm feeling waaay better - 1000mg - yup,1000 or 1g of IV pred a day for 3 days. Talk about pulling out the big guns. So I'm in the hospital for three days at least. Once the pred got in I immediately lost the pain so not on morphine for the time being.
Have a great evening my friends. BTW sure is slow posting using my iPhone compared t a real keyboard.
Thinking of you and so glad you're part of my extended family.

pberggren1
11-03-2010, 02:10 PM
I'm so glad to hear that your pain is almost gone. But with the high dose pred IV it is not surprising. I'm sure my doc will be pleased to help. If you want I can call you on your cell or you can call me, whatever works best.

God Bless,
Phil

marta
11-03-2010, 02:20 PM
I'll give you a buzz tomorrow Phil. You sent me his info and I'm suppose to have an appointment with my local GP tomorrow but I am thinking I won't make it. Ha ha. I also see my GP in Hinton that's been with me since the beginning on Friday but she's hard to go in and see so I'll talk things over with her. It's time to sit down and think things through logically and make a foolproof plan.

Got a chest xray but I didn't see it, Brian had a look. I'll ask them if I can see it tomorrow. I'm kinda curious. My O2 sats are low and I could feel that when I came in but no coughing or pain in chest area....halelujah!

marta
11-03-2010, 02:29 PM
Ha ha ha. I just got a great idea for a t-shirt from this experience. Bri, can you please bring me my laptop before you take off to the city tomorrow? I'm laughing already.

DEE
11-03-2010, 08:26 PM
Hi Marta . sorry to hear things have not been so good for you
glad to here your in the right place to get proper treatment
i had hassle with a sec at gp yesterday
and Geoff sugested i put on my hoodie and letb her know i mean business:rolleyes1:
take care of you Dee :hug2::hug3::hug1:

elephant
11-03-2010, 09:17 PM
Marta, like Dee said take care of you! You are on your way to see the Wizard!

eileenv
11-04-2010, 12:11 AM
Glad your feeling way better Marta now the meds have kicked in. Hope you are able to change rheumys without to much trouble.
God Bless Eileen

Geoff
11-04-2010, 12:18 AM
Ha ha ha. I just got a great idea for a t-shirt from this experience. Bri, can you please bring me my laptop before you take off to the city tomorrow? I'm laughing already.

Typical Marta! Whilst you are lolling about in hospital its good to know you are not wasting your time!!

All the very best from a 'new weggie in the Hood' in the UK. :hug2:

Sangye
11-04-2010, 01:06 AM
Oh Marta!!! I was hardly on yesterday and didn't see this until today. I'm so sorry you're having such a flare. I started on 1,000 mg pred when dx'ed, so I know what that's like. You can expect to feel like you can lift a car by today but PLEASE stay in bed and try to rest. Also, if your sats are low but your x-ray looks okay, they should consider a chest CT. My x-rays always look great but the CT looks like hell. That's not uncommon.

Like the others said, I hope you let that doctor know what happened.

Hugs to you, my friend. I hope you get out soon and bounce out of this flare quickly. :hug1:

JanW
11-04-2010, 02:07 AM
Marta, sorry to hear that you are having a flare, so hope you get better soon!

janNaz
11-04-2010, 07:35 AM
Marta,
I'm sorry to hear about your flare; It's pretty scary how this can happen so quickly. I hope you feel better real soon.

gmyi
11-04-2010, 11:00 PM
Marta I had some experience with an over enthusiastic rheumy in hospital at the beginning of treatment she send to every test and analysis that she could eider necessary or not so I went for every examine that she recommended to consult with other specialist about, and so I learned that she was learning on my case so I find other rheumy and left her, I wish you a lot of health

marta
11-05-2010, 06:21 AM
Yanks guys (as my little girl says). I'm on day three at the hospital so day three of solumedrol 1g - wooo hooo. I was quite a buzzy thing yesterday but my energy seems to be down today. The have found that my WBC are high - 19 (apparently healthy non-immunosurpressed people are at about 14). My liver enzymes are high, which they also were before diagnosis. My ESR has drpped a bit to 44 but that's to be expected after 2000mg of steroid action. I'm feeling a slight headache coming back and they took a sinus x-Ray to see if anthing is going on in there. This is a small hospital so no CT or any greater diagnostic tools.
Sangye, I was thinking about you as I was gobbling up my liver and onions for lunch - ha ha. I see the rheumy in a month, and he and I and my doc here are pretty serious about getting off the cyclo but gonna keep it going for a bit longer as we know it works - at least until we get a handle on things. Pred is going to be 25 in the morning 25 at night with a 5mg wean every three days starting with the evening dose, then the morning and so on and so on.

On a different note, I might have a little Weggie from Swift Current come by for a visit next week. He's gotta work on his dad but I think he can do it. I'm very excited to meet Phil face to face. Batman returns.

pberggren1
11-05-2010, 06:27 AM
Was there anything going on in there?

Was your local doc able to contact my doc? I know my doc is busy. Yesterday was his first day off in 10 days. He is very dedicated.

This will actually be Batman Begins.

marta
11-05-2010, 06:37 AM
No Phil. We're gonna deal with this little blip right now and once everything is ironed out we will discuss the doc options and go from there. I've found a couple of seemingly good options closer to home but I'll sit down and discuss with my doc how we can figure this out so that it's the best decision in the long run. I'm still with my guy who I ranted about but he seems suddenly more interested so we'll put out this fire and then think with a clear mind.
Rock on Batman.

pberggren1
11-05-2010, 07:29 AM
If you decide to stay with your current Rheumy be sure to lay down the law with him and explain how things are done. Sometimes these docs need to be grounded a bit.

drz
11-05-2010, 10:17 AM
Yanks guys (as my little girl says). I'm on day three at the hospital so day three of solumedrol 1g - wooo hooo. I was quite a buzzy thing yesterday but my energy seems to be down today. The have found that my WBC are high - 19 (apparently healthy non-immunosurpressed people are at about 14). My liver enzymes are high, which they also were before diagnosis. My ESR has drpped a bit to 44 but that's to be expected after 2000mg of steroid action. I'm feeling a slight headache coming back and they took a sinus x-Ray to see if anthing is going on in there. This is a small hospital so no CT or any greater diagnostic tools.
Sangye, I was thinking about you as I was gobbling up my liver and onions for lunch - ha ha. I see the rheumy in a month, and he and I and my doc here are pretty serious about getting off the cyclo but gonna keep it going for a bit longer as we know it works - at least until we get a handle on things. Pred is going to be 25 in the morning 25 at night with a 5mg wean every three days starting with the evening dose, then the morning and so on and so on.

On a different note, I might have a little Weggie from Swift Current come by for a visit next week. He's gotta work on his dad but I think he can do it. I'm very excited to meet Phil face to face. Batman returns.

I got real manic on that dose after a while. Staff found my grandiose delusions rather entertaining. Being high though felt rather good for a while but brain wouldn't work very well. Hope you have someone to help you monitor your care and help you with decisions.

eileenv
11-05-2010, 10:41 PM
Glad you feeling better Marta and you are going to get things sorted out with rheumy. So you guys may meet up, thats nice, hope Phil is able to sway his Dad to take him.

marta
11-06-2010, 02:58 AM
If you decide to stay with your current Rheumy be sure to lay down the law with him and explain how things are done. Sometimes these docs need to be grounded a bit.

I still think I'll look elsewhere, but it takes a while so I'll stick with "buddy" for this particular speed bump and then make decisions when I don't have the extra added stress of feeling physically off. Got your message Phil, looking forward to meeting a real superhero face to face.

Drz, manic is an understatement for day two of sedrumol. It was comic to say the least. My sister said I looked and acted like I drank a case of redbull. It truly was hillarious. I'm back down to normal Marta (which is normally a little of the charts anyway)

Have a great day gang. Thinking of you all and this whacky rollercoaster ride we're all 'enjoying' together.

LisaMarie
11-06-2010, 03:56 AM
Marta
Just found this...been off for a while trying to catch up at work ......glad you are enjoying the solumedrol effects i was only on 120 mg a day and had the shakes like you would not believe.......hope you get better soon...i had a 14 day stent in the hospital and even though it was ok...i would have rather been home...idle does not work for me...but when you can not breathe ..you are idle..lolol.....hope you find a good WG doc...my will always be the first to say ..I don't know ...but we will figuire it out.....and he listens to me...he is a babe in the world of WG but researchs everything......I agree with Sange get a CT when you can......I work at a rural hospital and we are lucky enough to have MRI and CT and Ultrsound.......If you want I can send you my iron skillet for the other mean hateful doc...sounds like he needs an old fashion attitude adjustment and this skillet is over 100 yrs old and is about big enough to cook 1 egg....my grandma called it the husband adjuster...Have a good day

elephant
11-06-2010, 05:34 AM
How are you feeling LisaMarie?

drz
11-07-2010, 06:32 AM
Drz, manic is an understatement for day two of sedrumol. It was comic to say the least. My sister said I looked and acted like I drank a case of redbull. It truly was hillarious. I'm back down to normal Marta (which is normally a little of the charts anyway)

Have a great day gang. Thinking of you all and this whacky rollercoaster ride we're all 'enjoying' together.

My family described me a a happy drunk so your descriptions sounds apt.