Mayo rejection

September 11, 2012

UPDATE 9/28/12:

Okay, so I finally called and spoke with someone at the Mayo earlier this week and was told that I wasn’t rejected, but I’m on a waiting list for the physician I want to see. So I will see the doctor, but who knows when. I emphasized my desire to be seen ASAP if possible because my health insurance goes back to crap January 1st. The nurse made a special note of that, apparently. Mm-hmm, sure. Waiting, waiting…always waiting.

_________

Another health update: I was recently rejected by the Mayo Clinic to see a doctor in their Orthopedic Surgery clinic for my right ankle. I had surgery for the second time on that ankle last October and the surgery hasn’t helped and possibly made it worse. I’m beyond frustrated. When I got home from my trip last month, I got a referral from my surgeon to see a foot and ankle specialist at the Mayo Clinic. I guess I’m not totally surprised at this rejection, since it’s difficult to get in at the Mayo. But I’m still pretty upset. I’ll have to get on the phone tomorrow and try to talk to someone about it and see if there’s anything that can be done. They just sent me a lame, generic letter in the mail so I didn’t even get to talk to anybody about it. Wish me luck, please! This ankle must be fixed.

Cooler weather, happier me

September 11, 2012

Palmer Lake, Minnesota, September 2012

It’s getting to be mid-September already and the weather has been cooler and less humid. However today it was a bizarrely balmy 95 degrees. What? Crazy Minnesota weather, I guess. Fall is my favorite time of year anyway, but I love it even more because the drop in temperature and humidity makes my body and aching joints feel so much better – especially my stubborn right ankle. Since returning from my trip to Europe a month ago, I admit I’ve been having trouble staying energized and motivated to get my life together and to get back on track with health stuff (diet, exercise, weight loss, doctor appointments, ankle). However, I did go on a long bike ride around Palmer Lake a couple days ago – twice around the trail! So that’s about eight miles total. My hardcore bicycling friends would probably find that distance rather wimpy, but it was the first time I ever did that, so I was pretty happy and proud. But, um, I haven’t been on my bike since then. Er. TOMORROW! I just can’t ride my bike or do any kind of exercise in 90 degree heat, and I think that’s understandable.

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Taper time

February 4, 2012

A lot has been going on lately with my RA and I really haven’t wanted to talk or write about it. But, I suppose I should give some sort of an update. I’m still on the evil prednisone, but I’m starting to taper down as of today. I saw my rheumatologist last week and he increased the dose to 20 mg (I think I was on 10 for a week or so) for a week and then told me to call him, which I did yesterday. My flare-up has definitely improved since starting the prednisone again but I’m still having pain in both ankles. After speaking with my doctor’s nurse yesterday afternoon, she relayed the message that I’m supposed to start tapering down to 15 mg for four days, then 10 mg for four days, then call the office again. She said that since I haven’t seen a lot of improvement increasing to 20 mg that I should start to taper down. That’s certainly fine with me – I hate being on the stuff. However I’m willing to put up with prednisone’s nasty side effects or just about anything else to make the flare-up and pain go away. My Remicade I.V. infusion was also last Friday so hopefully that will start to kick in.

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Wow I haven’t posted in nearly two months – sorry for that! Things have been crazy and busy and…challenging. I’m still recovering from my ankle surgery in October and I’ve actually been suffering through a pretty bad flare-up for the last 2-3 weeks. BOTH ankles have been really painful making it difficult to walk or be on my feet much. My hands and wrists have also been bothering me during this time, so I’m fairly confident it’s the RA flaring up and not something else. But who knows. My next Remicade infusion is Jan. 27th so hopefully that will help get rid of it. I also finally managed to speak with my rheumatologist’s nurse today and she told me that my doctor wants me to go on prednisone again for the next couple weeks until I see him on Jan. 26th. Great, PREDNISONE. I’ve been trying so hard to stay off this drug; I haven’t taken it since August. Before that I was able to be off of it for an entire year before a bad flare-up forced me to go back on it again. The thought of taking it now is very depressing and makes me feel anxious and kind of sick inside. But what can I do? The pain and swelling in my ankles is driving me crazy – it can’t go on like this.

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New haircut, new ankle?

November 26, 2011

The new 'do

Sorry I’ve taken so long to post again. I’ve been busy, ah, lying around being bored and feeling pathetic, I guess. Actually it’s been almost four weeks since the surgery and my ankle does feel better, which is wonderful. I drove for the first time today which was very exciting (it really was). I only drove a short distance though so I’m not sure how far I can go without it hurting too much. I don’t want to aggravate it and set myself back, of course. I’m dying to get out of the house though!

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Friday

August 26, 2011

I’m so glad it’s Friday! This has been a long, stressful week. In bad news, my ankles and feet are still in rough shape and are very swollen and painful. I wound up going to the ER Tuesday night because I was kind of freaking out and didn’t want to wait for a doctor appointment. Thankfully all of the blood/urine tests came back normal. The doctor told me that she thinks I just have a random case of edema and she prescribed a diuretic for me to take for a week (Lasix). Today is Day 2 of taking the water pill and I don’t notice anything different. I also don’t feel like I’m having to go to the bathroom more often. So now I’m afraid that the swelling is from the RA. My rheumatologist’s nurse is supposed to be calling me back today about this. When I talked to her a few hours ago and explained what was going on, she didn’t seem to think that my swollen feet/ankles are from the RA. But who knows, right? Most of the time with this disease I can never get a certain answer or diagnosis which DRIVES ME CRAZY. It’s so maddening. I really hope this swelling problem gets sorted soon because I feel like I’m really on the verge of not being able to handle it. What that means, exactly, I don’t know – but I’m close to it.

In good news, my new glasses came in a couple days ago (which I am sporting in the above photo). They’re different than my old frames and a bit bigger, but I think I really like them. Change is hard for me sometimes – arthritis flare-ups, new illnesses, new jobs, new glasses. Stress! I keep trying to tell myself that change can be good. I probably look even more like a librarian in these specs, but that’s fine with me. Librarians are pretty awesome.

Ok, I better get back to “work.” Happy weekend!

Bikes

August 10, 2011

Bike lock demonstration – The Bike Library Program

I just got back from taking a short bike ride, about 2 miles, which felt really great. Because the weather here has been so disgustingly hot and humid for the past month or so, I’ve been neglecting riding my bike (among other things). Maybe that’s a bit lazy of me, but if you ask anybody who lives in the Twin Cities area they’ll agree that lately it’s just been too damn hot to do anything. This evening I photographed the last Bike Library orientation of the season too, which maybe helped put me in the mood to bust out my own bike again. Sibley Depot’s Bike Library Program has been a lot of fun to be involved with and I’m very impressed with the work they’ve been doing in the St. Paul and Minneapolis communities.

In other news, while I’m still unemployed, I have been trying to keep busy working on my own stuff. I finally bought an Internet domain and web host and started building my own photography website/online portfolio. It’s pretty basic and minimalist, but that’s the look I’m going for, I think. Maybe someday in the future I’ll be able to make it fancier but for now I think it will work out fine. I hope to use it as a reference for potential employers and job opportunities.

Here’s the link: www.aclundberg.com.

Feel free to let me know what you think and if you have any web design tips or advice!

Okay, I’m really tired yet hyper-wired on caffeine. I will give up coffee again tomorrow, I promise. Or the day after tomorrow.

Goodnight, all!

Bikes are awesome. ♥

Sibley Bike Depot: www.sibleybikedepot.org

Heat

July 18, 2011

We’re in the middle of a sweaty, suffocating heat wave right now. Just running across the street to grab the mail this morning was miserable. So, I’d say this means no bike rides for me anytime in the near future. We’re supposed to have temperatures in the upper 90s at least until Wednesday, I think. The dew point is also extremely high, reaching tropical levels (75 deg. last time I checked online). I know talking about the weather is boring and I should be grateful it’s not snowing right now (I am). I do love summer yet the heat and humidity is hard on my body and causes a definite increase in swelling and pain in my joints. My ankles especially are both puffy and very sore to the touch. I’m sure I would be better off living in a drier climate, however Minnesota is home for now – with its sultry mosquito-filled summers and bone-chilling endless winters. Today I’m mostly annoyed that I can’t go on a bike ride or just sit in the backyard reading a book without melting into a puddle on the patio.

In other RA-related news, unfortunately the steroid injection I had in my right ankle almost two weeks ago did not help. I had a feeling it wouldn’t, because I suspect that the problem is in the soft tissue of my ankle and not the actual joint itself. The numerous other cortisone injections I’ve had in the past never helped, but I was really hoping it would be different with this one. I’m dreading calling my orthopedic doctor again about this because I’m afraid he’ll say what he said the last time I saw him in December after he looked at another new MRI scan – “I don’t know what to do.” What DO I do next? Try the Mayo Clinic again? The ankle isn’t that complicated of a joint (not compared to the wrist, for example); I just don’t understand how no one can figure out the problem. I’ve been dealing with these bad ankles since 2005 and it’s come to the point where I’m about ready to have the right one fused. I don’t want to do that but I don’t know what else to do to ease the pain. Does anyone have any insights or experience with this? If so, I’d really appreciate your input.

Small town care

July 8, 2011

Osakis, MN 2010

Check out this story from Minnesota Public Radio:

“Doctor as renegade – accepts cash, checks, eggs or pie, not insurance”

It’s about a small-town “renegade” doctor who is passionate about her job and lets patients pay with whatever they can afford, whether it’s cash, check, or eggs from the farm. My friend told me about the story this morning which is perfect timing since I’m driving up to Osakis tomorrow to spend the weekend there. I’ve loved this little town for years and it’s great to see one of its residents making the news for doing something good for the community. As a patient myself, who is continually fighting against rising health insurance costs and just the health care industry in general, Dr. Wasson is certainly a breath of fresh air.

Fluoroscopic

July 6, 2011

Bee Balm in the garden

Today was a really beautiful, perfect summer day. However what I had to do this afternoon did not bring me carefree summery happiness. This afternoon I went to CDI to get another steroid injection in my right ankle’s subtalar joint. At this point I can’t even remember how many injections I’ve had in this poor battered ankle. Four years ago I had synovectomy surgery on it which barely helped. I keep joking to various friends that I should nominate myself to be on that show “Mystery Diagnosis.” After six years of “mystery” pain and swelling in both ankles and countless trips to various doctors and foot/ankle specialists (even a trip to the Mayo Clinic in Rochester which yielded zero results other than a motel bill), I feel ready to give up. But I don’t want to give up. I want to be able to walk and just stand on my own two feet like a normal healthy person. The good/bad news is that MRI scans continue to not show any damage or active inflammation. That’s great, but why does my ankle hurt so much? Just looking at it you can see very obvious swelling.

So last week I decided to call the orthopedic doctor who did my surgery in 2006 to ask again if there was anything that could be done to relieve the pain. He ordered a fluoroscopically-guided injection which is what I had done today. Basically, the radiologist uses an X-ray/CT scan to locate the exact location of the joint and where the steroid medication will be administered. Luckily I didn’t have to wait long once I checked in and filled out the annoying paperwork (that I have filled out a million times already for MRIs). I was escorted to a procedure room and was then told to climb up onto the table. The doctor instructed me to lie on my left side with my right ankle facing up. He washed and sanitized the area with alcohol and disinfectant. Then he inserted the needle with a general anesthetic to numb the joint. That hurt pretty bad since my ankle is already very tender and sore to the touch. After the anesthetic was administered (and I was silently gripping the sides of the table trying to not wince from pain), the doctor injected the contrast dye. This felt very strange and despite the numbness, I could feel the liquid of the dye worming its way into my joint. Then, with the aid of the X-ray and the dye, the doctor injected the steroid. “That’s it, you’re done.” Thank God. Once the needle was out I felt a lot better and proceeded to sit up and then hobble off of the table and limp back into the waiting room. I’m really crossing my fingers that this will work and I will finally have some answers about this stupid, frustrating ankle. The technician told me that it can take up to a week for the medicine to really take effect, so I need to be patient. I thought to myself - yeah right, more patience. It seems no matter what is going on with my RA – waiting for steroids to take effect, waiting for flare-ups to go away, waiting for medications to get covered from health insurance, waiting for my next doctor appointment – this disease is constantly testing my patience. Some days I’m amazed that I have any left.

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