Ick, IT'S back

Boomer13

I was having some good weeks since the beginning of January, minus 10 days due to a virus. I thought maybe I was just having few not-as-good days a week or so ago but now things seem to be going decidedly downhill again with feet, ankles, knees, neck, back, wrists, a few others with some major tendons doing something awful too. And, huge fatigue. Feel the need to rant and complain. I thought Enbrel might be finally working. I had even proudly announced to GP how little codeine I had been taking and that I would be reducing tramadol next. Not a chance now.

My next rheum appointment is March 1st. Not looking forward to the two-day trip when I feel like this although, it's good I guess to be seen when feeling lousy. I'm not sure what I want him to do. Do I accept the modest gains I've made with Enbrel and MTX? Or, scrap the Enbrel and try something else. Pondering this under my duvet today... :?

stickywicket

Oh dear, Anna! I'm so sorry. I wonder if the virus set something off. I guess at least you now have no qualms about seeing your rheumatologist though the journey will be daunting. I hope that , between you, something helpful can be arranged.

dreamdaisy

Crikey. I'm wrestling with the thought of a two-day journey to see a rheumatologist: I sulk with traffic which might delay me by a few minutes. :oops:

When we were thinking about moving (and he was keen to live in the country) I made one thing clear: I needed to stay in contact with my current hospital (rather than change) because they knew me but in your situation? I don't comprehend such a big world where seeing your rheumatologist takes such a trek. Our island is very small but to us can seem stupidly big. To you it would be nothing.

I understand that you love where you live but maybe it's time to change? Might it be worth moving closer to your hospital? I'm sure you know by now I don't mince my words but I care: moving is hell but if it can benefit your health (and his too because he ain't getting younger) maybe this is the time to do it?

If I've spoken out of turn I truly apologise. DD

barbara12

That is some trip to see the rheumy,..sorry I dont have a clue why it will take 2 days for you, but I really hope its worth the journey and they can offer some help..

Boomer13

The explanation of why I do the two day trip is that I could do it in one day if:

a) I could afford to fly there and back.
b) I were more healthy, I could cram the trip into one long day. I did this once last year and it was horrible with way too much misery afterward.

So, taking two days allows the needed lounging and relaxed sauntering between travel connections. No rushing and, then a quiet late afternoon/evening in the hotel which is conveniently right across from the dr.'s office. I try to do one special thing like visiting a special shop or to a nice restaurant for dinner, if I'm up to it, to make it feel like a mini-holiday. Call it pacing in the extreme. I just can't do the hurried, rushing business. I really do move at a snail's pace, it's the only way I can avoid extra misery.

When I was being referred to a rheum, we only had one here on the north part our island and he was horribly overworked and did not have the best reputation, so I chose to go to the big city. It was my choice, fed in part by some frustration with the local doctors. I think there a couple more rheums now with offices a little closer but since I am already a patient with my current rheum, I chose to continue with him. We have a doctor shortage here in Canada in general, and specialists are in even shorter supply. For example, there is now a three-year waitlst to get in to see my rheumatologist. That alone makes me want to keep my spot in his clinic :shock: Maybe one day we will have a rheum here at our local hospital. We have a bright, shiny new one under construction and many different other specialists here now, just not a rheumatologist.

So, that's my story. It's my choice to do the trip this way.

No offence taken DD. I believe you are correct however, do to circumstances beyond my control I am unable to contemplate a move at this time. I know it will come eventually but not in the near future. Thank you, I always value your caring opinion Well, everyone's opinion here.

Boomer13

Sticky, I think you are probably right. Bad timing to pick up a bug when starting to feel a little better. February is bug fiesta time, I think!

To answer your query more specifically DD, I will move eventually to a small place with no stairs! I will never be able to afford to live anywhere close to my rheum. That would require a movie stars' bank account. The home prices in that city are unbelievably high, even an apartment costs a small fortune. I will have to move on from his clinic eventually. Maybe when we get the shiny, new rheumatologist built here, I mean hospital... A shiny, new rheumatologist is sure to more here to the new hospital, I think?

I'll try not to complain too much about my travel. I do try to enjoy it as much as I can but in the days before I'm set to go, I find myself intimidated by the idea. It's the trip, then the recovery after. Ho Hum, life with arthritis. Even if I went to the the bigger centre here on the island it would take 6 hours plus with much worse travel and bus connections. Nothing's easy, I'm getting used to that.

stickywicket

My former GP once said that it's bug festival time because we've all used up our resistance and vitamin D levels over the winter. I've no idea if he was right or not.

I guess the trouble with most journeys – real or metaphorical, arthritic or not – is that we all have to start from where we're at. I've been fortunate to live relatively near an excellent large teaching hospital for most of my arthritic life. I now have to move into the medically unknown. I'd rather not be doing it but needs must so I'm trying to see it as an adventure.

What happens when the journey does really get too much for you regardless of overnight stays? Have a Plan B, Anna. They can be a comfort.

Popsmith1874

God I thought I was bad having to travel to the city from the west coast of Scotland, I remember years ago when in the forces we went t Canada for a month ie the Rockies what a beautiful country

Bovey1

We moan about our NHS here in the UK, but we are extremely lucky to have it, and not to have long journeys to access care.

mig

Good luck with your app ,passports ready if you need company. Mig

Boomer13

Yes please, Mig! Fellow travelers most welcome. Hotel accommodation and dinner or lunch provided; there are some great restaurants only a few steps away. I need all the help I can get this time.

Popsmith1874, the rocky mountains are truly wonderful. I have done many wonderful hiking trips there and, so glad I did when I was capable. Now I live on the west coast which is equally wonderful for mountains and views. I can't do the hikes anymore, sadly. One of my last big hiking trips to a local mountain, I noted that I was the only Canadian there. The other hikers were all Scottish, British, American. It was a multi-cultural experience in one of the most beautiful places I've ever been.

Good idea, sticky. I'll work on my plan B. I've always just planned on staying an extra night if I felt that bad. There is also a hospital right around the corner if something really terrible happened. And, my best friend would drop everything and drive over to get me. OH would too but it's harder for him to get away.

stickywicket

Just wanted to wish you all the best for tomorrow's appointment, Anna. We all invest so much hope in many of our appointments but, when just getting there involves so much time, effort and trauma, it must be so much harder for you. ((( )))

Boomer13

Thank you Sticky. I'm even less motivated than usual. I don't know what I'm going to say and I think whatever happens during my visit will be met with "I'll assess you again in three months" which makes the long trip seem pointless. Maybe he will surprise me.

I'm trying to think of all the lovely gardens I will be passing with early flowers in bloom. A pleasant distraction.

stickywicket

Oh I hope not. Not when things are so rough for you. At least you will get an informed opinion about what the enbrel is or isn't doing. Good luck.

Boomer13

I'm back. I was absolutely exhausted when I arrived but made it to my appointment on time . It was a good appointment, very thorough and, a physical exam. He decided my feet and ankles were a mess (I agree!) and finally discussed seriously the ongoing elbow pain. He was not pleased that I had not improved more on Enbrel and thought I should change, so I will be starting Humira soon. I'm anxious about this, I will admit. Hopefully, I won't get worse. I'll be getting the first treatment at my GP's office soon.

The hotel where I stay houses many visiting medical patients and, gives special treatment sometimes in the off-season. My room was an extra nice one this visit. I didn't do anything special this time, too tired. I have managed to pick up a virus on one of the crowded buses I was on . So nice to be home, even with a virus on board.

stickywicket

Of course you are anxious. Any new med brings a trail of 'what ifs' in its wake. But I think you felt that this - or something of the sort - had to be so, I guess, good on the whole and a new chance.

I'm sorry you found a new bug :roll: I hope it leaves you asap.