All I could do was laugh when I was asked this questions by my favourite aunt at the dinner table.
I've been silent on this site for quite awhile because I just don't want to deal with my health issues anymore....I'm just so dang fed up with it all.
I want to live my life, and live it the best I can...Do I want to bury my head in the sand like an ostrich?... all I can say is, "Yes, yes, I do ! ".... As long as I am pain-free and able to live, laugh & love..and yes, work for a living... then I figure there is nothing wrong with ignoring all my bruises & islands of swellings that cover my body. I honestly think that if the medical profession doesn't know why I am covered with bruises & swellings, then why should I?
The medical profession just doesn't know what the heck is going on with me. I feel like I am just being passed around from specialist to specialist
So, at the beginning of September, I was sent back to be reassessed by rheumatology. After looking me over, my rheumatologist just shook his head and said that he will see me again in April 2019...grrr...
Happy Thanks Giving everyone,
Sue
Written by
Cherub198889
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Hey Cherub, glad you broke your silence, you explain so well. It is indeed incredibly frustrating to wait, with hope for that important appointment with Rheumy Consultant to be simply told he/she will see you in 6 months! I have been in that situation but did not wait 6 months because I couldn't! No one wants this illness and most want their 'old' life back. It's possible! Hold onto that. It's like the saying , ' you have to kiss many frogs to find your prince' I am still kissing frogs ( unfortunately) but I seem to have found my drug that is making me feel better after trying many! For those who aren't patient, it's far harder to cope with waiting on a successful drug! Your not alone. Big hugs, stay strong, you will get there.. ♥️
APRIL SUE and whats going on in between with them have given the reason why so long well may be i can say i am in similar boat but they are least trying something have you not raised a complaint i am sorry for you dont like it thats 6 months ask for a differnt expert as some them call them in hereif he/she as any knowledge he would not give up get back to doc and tell them your not happy could b something else i think make the grade for rheumatologist happy thanks giving with family how do go on with it to near xmass for me something to do with harvest is it well stuff that trump guy hope iam not upsetting anyone again bye sue
Jan, you are one wise & sweet lady. I missed talking to you & the others here. This site was very special to me as it was my "silver lining" during my darkest days of being diagnosed with RA. HealthUnlocked kept me sane.
I guess because I was discharged from rheumatology last April, I felt I didn't belong here anymore.
I've seen quite a few different auto immune specialists over the past 5 months and I guess I am lucky to be rejected by them. I never realized how many auto immune diseases exist! My eyes have been opened. Our governments need to invest more money into healthcare. No one should suffer if you have a rare auto immune disease.
Anyways, I did host a large dinner last night and I had a wonderful time. I think my hubby & I are used to the "islands of swellings" and the bruises...but it must shock people I don't see that often.
Not Jan but hey. So you have been pushed from pillar to post for 5 months. I'm confused though, islands of swelling & bruising yet Rheumy says he'll see in 12 months... has he said what it is you'll be seeing him for? You only alluded to a rare autoimmune disease. Has he prescribed anything for you?
Well done at hosting dinner & that you were able onto enjoy it is a bonus. That wouldn't have been easy this time last year so that's a big well done to you. x
Oops!!! I had a brain freeze... my bad....Please allow me to try and back-pedal out of this faux pas.....So you didn't change your name from Paula to Jan?...are you sure?..... hahaha....
On a more serious note, I didn't mean to allude that I had a rare autoimmune disease. I was tested for 3 of them. Thankfully these tests came back negative.
No, my rheumy didn't prescribe anything. He says my joints look fine and since I'm not in pain, then he thinks I don't need meds. I think he is confused too. I do trust my rheumatologist & I love that fact that he is open & honest with me. He also wants me to contact him if I notice any more odd symptoms occurring and he will see me ASAP.
I don't know if this is true in the UK, but in Canada it seems that the last specialist that has treated you gets stuck with you. Does that make sense? ...who knows what specialist I will be sent to next?
The bruising started happening in July. At first I thought I must of bumped into something at work and thus the bruise. As time went on, bruises started appearing for no reason at all. It really upset my husband and me because of the looks we got from strangers. Some days I did start to look like a battered woman. Please believe me that I am not. Apparently spontaneous bruising can be cause by an autoimmune diseased called ITP (???) I was tested for this and I am grateful it came back negative.
Haha. Don't worry, I respond to most things except names!
I think I've got the wrong end of the stick having read your post again. It must be confusing though, not knowing what's causing the bruising & yes, I can relate to how your husband feels because I bruise very easily, always have even pre RD, you want to tell people who do a double take it's nothing he's done but they're strangers so why should you?
I'm confused so it must be for you but at least you're still on his books & is happy for you to contact him before your next appointment if need be, let's just hope it's not necessary. I hadn't heard of ITP but having read a little now would it not be an idea even though you've tested negative to ask if you should have blood tests every now & then? There's something going on blood-wise as you're bruising, I could be being naive, I'm sure you've done more research so feel sure you'll ask all the right questions.
Well, been lovely to speak again. I really hope you've no need to see your Rheumy before your planned appointment. Don't leave it too long til next time. x
Yes, I am really lucky that my rheumy will see me before my scheduled appointment.
I've spent a lot of time researching all the diseases & syndromes that anyone mentions to me....and some, if not all, sent me into a panic. My neighbour mentioned Leukemia a few months ago and I was sure all my symptoms matched. I was thankful my GP told me that I didn't have Leukemia. My GP also asked me to stop asking "Dr. Google" and enjoy our beautiful extended warm summer. So this is why I have chosen to be an ostrich
My symptoms are so strange that I found myself turning into a hypochondriac. LOL I must confess that being a hypochondriac is not a good look for me ... an ostrich is a better look.
Pass the potatoes my way - I would love a good thanksgiving dinner....
I'm sorry that you are not totally symptom free, that seems mightily unfair. But if all your vital signs are good, and pain doesn't stop you doing what you want and docs don't think your getting permanent damage then perhaps a few months off being an ostrich is not so bad?
It's been 1&1/2 years since I felt any pain (thank God). I do have some damaged joints that happened prior to Feb 2017, but nothing since. I have a rheumy appointment in April, but I was told if any changes happen, I can see him ASAP.
How are you doing helixhelix? I hope you are painfree.
Hi Sue, Jan here. I had also hoped that your quietness meant that you were doing well, off on your boat and enjoying good times. I'm truly sorry to hear you're not. Doing the rounds of all those doctors is no picnic I'm sure. Being told it might be x, worrying about x and then told you don't have it must wear you out. Being an ostrich seems a good plan but maybe not for me. I'm too nosey and the ground is sooo far away. Please don't feel that because you don't have RA you can't be here. You've been much missed especially as I've managed to lose your email address. Wishing you well
Hi Jan. It is very frustrating not knowing what is going on with me. I have no pain anymore but I am left with minor OA, islands of swellings & now bruises.
How has your summer been? Summer here has been hot & it has lasted until the first week of October. We are supposed to have a nice warm weekend coming up. So James & I are going boating. We are going to the San Juan Islands on Saturday to look at a vacant lot for sale.
It's been nice talking to you again. How are you doing?
You could just scream sometimes couldn't you? I feel like it regularly. Swelling and bruises don't sound like fun and I truly hope they find out what it is soon.
Our summer was long, hot and sunny which is such a change from the usual cool and grey. We had a month in France and went down south to Dorset for a week. Gorgeous. Unfortunately there have been a few upsets in the family which have made life difficult but can't say too much without swearing. Ho hum
Looking at a vacant plot in the San Juan islands, Washington? Are you planning to build your own house out there? That sounds a really exciting plan and something good to look forward to.
I'm not doing too well at the moment and have an emergency rheumy clinic appointment tomorrow to see if we can calm things down. I suppose that's what happens when they start messing with meds and doses.
It's good to chat again. I just wish I'd stop messing about with controls I don't really understand. I blame the dog
Sorry to hear you're not at your best. Messing around with meds and doses are never a good thing. I hope your rheumy can calm things down tomorrow.
My hubby & I were looking for property on the Gulf Islands back in March and we almost purchased one. It was Ocean front property over looking the harbour. Our goal was to build a home there and then live there permanently when we retired. ....but then I got a Multiple Sclerosis scare...and then another diagnosis... so during all my medical problems property values sky rocketed again...even on Saturna Island!! So, we decided to look at the San Juan Islands.
Yes, the San Juan islands are in Washington. Have you been there? So beautiful & peaceful. We would use the property as a year round family vacation spot. We wouldn't be allowed to live their pertinently as we are Canadian. I just want a place out of the city. You know, a place to relax and enjoy life.
You're right, I'm Canadian & I live near Vancouver. Happy Thanksgiving Need2knowN. How are you doing? I hope everything is going well for you.
Lovely to hear from you sue, sorry it’s all gone a bit pear shaped and they don’t know what’s wrong yet. Can perfectly understand the ostrich bit; I think we all have periods where we’re fed up with this bloody disease taking over our lives & conversation. Your garden looks beautiful by the way 😀 x
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