Anxiety. Definitely not a trait that haunts me often, but when I visit the rheumatologist's office it takes over my entire being . I develop a huge feeling of fear and anger before I even hit the front doors. Why? Once I open the doors to the office building I feel doomed and out of place. With every appointment I have had in this office I sit next to elderly patients that struggle to get up and have never once seen anyone my age, there are posters of joint deformities in the patient's room that scare the pants off me, and I associate the office with all the side effects that come with the medications. I also associate it with lost hope.
When I arrived I was told I couldn't switch doctors without their consent. I explained that when my PCP referred me to the new rheumatologist I didn't even realize that she was in the same office. After fighting with them a while I told them I would just cancel and find another office. They went ahead and let me see the new rheumatolgist, but I could hear them talking in the back room quite surprised that someone would switch doctors without their consent. This doesn't seem that strange to me. Does it you?
The new rheumatologist is young, full of energy, and fast. And, she doesn't have a fear of my feet! The kids used to go with me to my appointments and we would always laugh afterwards because my feet used to hurt horribly and my old rheumatologist would rarely touch them and when he did, you could tell it really grossed him out. We quickly discussed my RA history, she reviewed my recent x-rays and blood work and added some additional blood work. Originally I was negative for RA factor, which I know many people are. She wants to retest and see where that stands now. Also, she drained the fluid from my knee which had ballooned the night before my appointment. There was a lot of fluid. Yuck! The results on the fluid came back with high inflammation. She confirmed that I have severe rheumatoid arthritis which I was already aware of. She would like for me to start on medications and will call next week with her exact recommendations after seeing the rest of the lab work.
I have been awake endless hours thinking about what I want to do. My first reaction was lots of tears and panic. Then I moved to sadness and finally I am to the point of looking at my options again. One part of me really just wants to take the medications, cross my fingers and hope they work. But, there are no guarantees of that. I have read too many stories of RA friends that have gone from medication to medication and still live most days like me. But, they could work too. There are wonderful stories of RA friends that are doing great! It just isn't settling right with me. I have worked too long to be drug free and still trust there is something alternatively out there for me. I am meeting with my original naturopath tomorrow morning to discuss my options. She will be brutally honest with me. If she feels I should do medications, she will tell me. I think she has one more idea up her sleeve though that I have been reading about and it looks promising. I will share more when I have talked with her.
This long, painful flare has reminded me that rheumatoid arthritis is a very serious disease that is a part of my life and will always be a part of my life. I have made so many good changes in my life due to trying to find an alternative route to curing this and I am not about to just give up on that. At some point I may have to integrate more than I am now and many of you may feel that I am living in "La La Land" for not doing so already. But, I have always been good at following my heart and my heart is telling me it isn't quite ready to give up yet. It still sees another way for me or maybe new things about myself I need to learn before throwing in the towel. I am confused, I will admit that. But after a few days of crying, talking, and researching I am finding myself again. I like that feeling. I now have all the current information regarding where my rheumatoid arthritis stands and I will just have to think carefully about how I personally want to treat it.
Insurance companies suck. The policy that we have (through my husband's job) costs a bit more but it gives us to the freedom to go to any doctor (within network of course) without a referral. Some people tell me it is not worth the extra money, but for me, it offers peace of mind and the ability to be in control of my options. If you can afford to pay the extra $$, go ahead with a plan that allows you that freedom. It doesn't matter for those who do not have health issues or frequent visits, but it does to people like us who visit doctors more than we would like.
ReplyDeleteI cannot believe a doctor would tell a patient that their feet gross them out - girl, you really needed a new doc!
You are right about the meds, I am doing alot better than when I first recieved my diagnosis (painwise, at least) and don't forget, I also have fibormyaliga. I am sure if it was just RA, I would be doing alot better.
Alot has changed in the last few years in terms of meds and treatment options, so please be hopeful about your treatment options.
Cathy, I read between your words what a truly deep conundrum this is for you. How to best treat RA really is a difficult decision for a lot of us make. I understand your ambivalence toward taking meds; I gave up on them myself for quite a long time. I was lucky; my RA eventually went into remission, a situation for which I will be forever grateful. Whether that was a effect of getting off meds or simply the course of my own disease is impossible to know, really.
ReplyDeleteUnfortunately, the remission ended and my RA returned. It's different now than it was in the beginning (less terribly painful and disabling) but I was surprised when I learned that remission really only meant a cessation of symptoms, not that the disease had stopped or gone into suspended animation. It was still doing its slow damage in my body. Phooey.
I struggled for a long time over going back to a doctor for my RA. I had little faith in the meds and wanted very much not to be stuck in that "try this med, try that one," mode again -- which also came with the risk of side effects and other complications that had little to do with my RA.
In the end, I decided that I'd rather take the risk and try to slow the progression of the disease with meds, since it was going to progress in any case. I'm not particularly satisfied with the situation right now -- three meds, another in the works, the threat of possibly serious side effects and little actual evidence that any of them are doing much -- but it's hard to know for sure how I'd be without the drugs, too.
We each have to follow our hearts and instincts when it comes to this disease. Going without meds and treating the disease with diet and supplements works for some people and not for others, just like medicines. You're doing your best and being very courageous as you fight your RA. That's what counts.
I'm delighted that you like this new doc, however. She sounds much more empathetic and caring than your last. Perhaps she'll be able to help you find the right path for you. Perhaps it's a combo of both ways, the medical and the natural. Who knows?
Whatever you decide, please remember that I (and many others) are behind you 100 percent and deeply wish you relief from the awful pain and disability you've been enduring. You continue to be an inspiration and a sun-bright light of hope.
Gentle hugs for you,
Wren
Reading your post reminded me of the visits and thoughts I had while sitting in the Hematology and Oncology offices 10 years ago. It was very scary.
ReplyDeleteFluid drawn from your knee...ok you know I would faint.
I am sorry you have been enduring such pain. Cathy, I pray that your light will break forth as the morning and your health springs forth speedily.
Good luck Cathy...you do have our support in whatever you decide to do! Life is too short to be spending it in pain....hopefully things will turn around for you soon!
ReplyDeleteWell I'll tell you, if your living in La La land, I'm right up there with you. I've been told 4 years ago to go on Methotrexate and I've been burying my head in the sand like an ostrich. Someday soon I'll have to make some choices as well, just not today. My feet are pretty bad too and finding shoes that fit and don't hurt is a struggle. Now I'm facing another hip replacement and my one knee is swollen. I'm waiting to hear your report from the naturopath ...ciao
ReplyDeleteYes, Wren. I do feel this is a deep conundrum for me. Thanks for understanding that. We are each so different in how we respond to RA. I really want diet and supplements to work for me. But, it just may not be. Thank you Wren for your encouraging words. They always settle so well with me.
ReplyDeleteLeslie, Rositta and Lana, Thanks for your encouraging words also. It means a lot.
Lana, he didn't SAY my feet grossed him out, I just always got that impression since he would often check every other joint even though my main complaint at the time was my feet.
I'm really sorry, Cathy. I know how hard this is for you and how hard you've worked at being med-free. It doesn't help that your doctor's office is scary!
ReplyDeleteYou have lots of support regardless of what you choose to do. You should feel very good about all you have done to learn about your body and your health. If the meds are the right choice for you at this time, I hope you can come to see them as something positive, and that they will give you all the help you deserve. And I'm sure all of your knowledge about diet and supplements will help them work even better.