Re:Tuesday at the hospital [sorry i'm late getting back to you]
Sorry for being late and letting close member's not know earlier how i got on but this week here as been like a mad house.
I got to the hospital for 11am and they kept me in the day unit till 3-30pm till i saw a Doctor, they took my blood pressure still low and urine sample that came clear again.
The Doctor came to see me not the specialist i do see, same old question's again wanting full back ground history, well i told him what he needed to know plus my joints aching my kidneys hurting and swelling and then he checked my skin.
He had me reaching and bending to see how my joints and muscles was working and the usual poking and prodding of my body to see where i was hurting. He had'nt got my full details but new the results from my last 11 tests, he said one blood test said you was on the verge of being anemic and within a minute one showed being anemic, he asked if i had trouble eating food i said meat off a dinner but not meat cooked in sauce and apparentley that came positive, my actual gullet is drying out and not much juices or saliva is going down.
He wanted me to have a steroid Jab i told him no and the reason's why and i told him i suffered from manic depression and he said i could'nt have it because it makes it worse plus sends you paranoid and that's when i mentioned plaquenil and he said i can't have it as i've got to wait to see my specialist in january but told me that my joints and muscles are inflammed plus my past history of breakages from my epilepsey have'nt helped and he told me someone suffering ill like yourself with depression and coping with two forms of epilepsey and Todds -paralaysis don't realy need to know what they do have, i tried to push him furthur put got no where and was sent for a furthur 12 blood tests and two x-rays on my back of my spondalitis and my hips where i get the pain but i've damaged my pelvis twice in the past and caused severe damage to that.
I won't let it rest there come january, as like alot of members on the site i actually feel like i'm being fobbed off now, no more blood will be given as i'll be needing a blood transfusion at this rate. I've been so angry all week hoping i could start the plaquenil to ease the pain and symtoms.
Thankyou to everyone for your support and waiting to hear and i do apologise again.
Love to you all Terri xxx
What you said about dryness and lack of saliva made me immediately think of one of the fun diseases that I have - Sjogren's.
Here are a couple of sites that you should check out - http://www.sjogrens.org/ and http://www.sjogrensworld.org/forums/
The question that he asked about swallowing sounded familiar, too. I have problems with dry food, but not if there is lots of sauce, too.
I also have dry eyes, so I'm using Restasis, and other parts (female) are quite dry, too.
What he told you was a cop-out! I think that it would cause you less stress and depression to know the name of the monster you are fighting and your options for keeping it under control.
Keep fighting, girl. I've found that the combination of Plaquenil and MTX are helping me.
The Following User Says Thank You to magistramarla For This Useful Post:
Since tuesday my husband as heard nothing else about what happened and i'm so savage and he did'nt want to committ himself and like you've just said another cop-out but the specialist wow get off so easy because years of dealing with being messed around, i don't mess around now and the skin specialist saw my 9 blood results and told me infront of my hubby i have the raynauds/SLE which he deals with but told me he can't deal with the LSE that's for Dr Allaf.
My eyes are dry but not to the extent of them prescribing me anything but i'll look the links up later. With what i've gone through over the years i don't think knowing another think will do much harm.
I've woke today at 12-30 and am still not dressed, my hands are swollen and my joints are doubled up but never mind me how are you feeling?? and have a lovely weekend mate.
Love Terri xxx
Hang in there girl! It sounds like the Raynauds is really bothering you today. Keep after those docs.
I'm feeling great today - today is our actual anniversary. My sweetie got up and made breakfast (not so great, since he's a terrible cook). He redeemed himself by taking me out for a nice lunch. He's studying today, but we're headed for San Francisco tomorrow. We're going to tour around and spend the night there. Jeff has a doctor appointment at UCSF on Monday, and then we'll take a leisurely trip home. We live about 3 hours down the coast from SF.
It's bothered me more today doubled up in pain and took 4000mg of paracetamol to ease the pain abit but i'm realy going drugged up now.
Well Congratualtion's on your anniversary and stop going on woman he did is best, breakfast in bed and that's a lovely treat alone. Well it sounds like you live a lovely life to the full marla and it's lovely to hear, i won't hardly go no where no more. Well enjoy your night out and i do hope all goes well with your hubby's appointment and 3hrs from the coast what luxury.
Keep it up mate & all my love Terri x
Oh Terri I hope you have better luck in Jan! Doctors drive me insane anymore. I would like them to live like we do and then wait for someone to have the guts to give them an answer. Bet things would move much faster then! Remember we are here if you need to vent.
Success is not final, failure is not fatal: it is the courage to continue that counts.
Originally Posted by tgal
When January comes my hubby says he's coming with me this time, he's a carm person but when he means business he's stern in a way by letting other's know he means what he's saying, so that will help because i lose my temper bad and start flaring which does'nt help.
It's totally disgusting how your being treated and so many other's, i feel where i'm concerned because of my depression plus in the past over dosing on tablets they're hiding results from me and especially seeing my past.
They're taking no more blood either when i see him because they've took 9 then 11 and 12 again and if they don't know what's happening no one does plus your smack on mate with what you say and i'm a big believer in it, it takes other's and doctor's to know what it's like by actually having it but i might get intouch with my psychiatric doctor this week he's a pure gem and i'll ask him to get the results as he knows alot about Raynauds in general.
Cheers mate, i know your all here for me when i'm down and you would'nt believe how that helps and the same here mate for you also.
Love Terri x
Originally Posted by magistramarla
Before knocking my pc off for bed tonight, i've been looking at those to sites you added and a large thankyou mate, you mays well say i have 80% of the affects that the disease gives you and come tomorrow i shall be looking again.
Cheers mate & takecare Terri xxx
I'm glad that those sites helped. I'm also glad that your hubby plans to go with you in Jan. Both of you should learn as much as you can before then and go armed with lots of questions.
Thanks for the well-wishes for our trip. We had a wonderful time in San Francisco, even though it rained. We ate sushi in Japantown and enjoyed the Japanese mall. We went to a place called The Absinthe for dinner and tried the drink of the same name (delish) and ate a gourmet meal. SF is a gorgeous, romantic city.
I'm gonna make you even more jealous - I live right on the coast, 100 miles south of SF. We live in military housing, but we have a lovely view of the Monterey Bay from our living room window. I'm from the Midwest, so I'm just getting used to all of this coastal living. We're here for 3 years, while Jeff studies for his PHD. I will really hate moving back to Texas!