I am so behind on posts. I’ve got so much going on — both health wise and just life, I’ll fill you in soon. But the girls and I headed to “music city” for memorial day weekend. Another weekend of weighing the pros and cons of chronic illness in the comfort of a hotel room! It got off to somewhat of a rocky start. I wasn’t feeling well and began debating if I was even up for the travels.
Sometimes it’s hard when you’re not in the comfort of your own home. Equally hard when there is a group of high energy girls.
My friend Molly was driving. Saluting the arch around 6:45pm with wagon wheel blaring from speakers we were officially on our way Nashville.
Finally around 1am, 3 tired girls pulled into our hotel (aka apartment). Have you ever stayed in a Residence’s Inn? It’s amazing! Complete with 2 bedrooms, 2 baths, a full kitchen, family room— all for $169 a night. We were obsessed!
Exhausted from the drive, we strolled in, chatted with our 2 friends who had arrived hours before and then got some shut eye.
We started our morning off with a little free breakfast, courtesy of “the apartment” and then got ready for some shopping. I was feeling okay but put a stipulation on the girls… I would only go to a few shops and then cab it back so I could rest and conserve some energy. Sometimes it’s hard sharing a room because if people wake up before me ~ sometimes the lack of sleep can throw off my entire day. I knew I would need some extra rest on Saturday due to the early morning wake up call.
Downtown Nashville had so many great photo ops, I could hardly contain myself. One thing my friend Laura and I LOVE is taking ridiculous photos. Broadway is jammed packed with those ridiculous photo opts.
After we realized that cowboy boots were completely out of our price range we headed into a honky tonk to enjoy some live music before heading back. The girls decided they would rather head off to the pool and I was going back to rest.
We started the night off at Rippy’s BBQ. Before we headed over to one of my favorites, TOOTSIES!! Luckily we were able to get a table, which was fabulous. That allowed me to stay out as sitting accommodated my heart rate rather well for the evening! The band was fabulous and I guess I never knew how much of a country fan I was until I knew every lyric to every song the band played.
The band seemed to get a kick out us and I guess he thought I could sing since I was signing along to all the songs…. making his way over to our table he decided it would be a good idea to place the microphone in my face— allowing me to sing. Finally I had to tell him I was terrible. I think he figured that out on his own…. Yikes!
The girls hit the pool while I stayed in. I tend to break out in hives when I go out in the sun. What a waste of “native american skin”! I was only out for a short while on Saturday and the hives started so I figured it would probably be wise to use that alone time to rest up. I never used to get hives, in fact- I never used to burn either, just one hour outdoors would be enough to complete my tan for the summer. So… I have my medication and disease to thank for the hives.
Based on how I was feeling I was worried Sunday night could be a real struggle but after our sushi dinner I seemed to perk up. It’s a good thing too because we headed over to another favorite, HONKY TONK CENTRAL. The band playing was just as incredible as the one Saturday night. My friend Leanna seemed to spark the interest of the lead singer. He scoped her out and came over to our table…. even serenaded her up on stage. I must admit, he was a tall glass of water… too bad we don’t live in Nashvegas.
I think the Arava is finally starting to somewhat kick in. My vomiting was nonexistent, fevers only were present Friday and Saturday, fatigue is getting better and my joint pain was tolerable. I did require a lot of rest and basically used the days to rest up. I think all 5 of us agreed that this weekend was the most fun we have had in a long time.
I am so excited that I pushed myself to go this weekend. The looks of it on Friday was a bit worrisome as I did not feel well. But all in all it was great weekend!
The other day I was talking to my transplant nurse about daunting process of finding a new Primary Care Physician. My doctors practice is becoming too large. It’s hard to be seen when I have an acute illness (flu, sinus infection, etc) going on. When those issues have come up in the last year I had to turn to the urgent care the last 4 times.
For most people it may seem like an easy task of finding a new doctor. Just pick up the phone and schedule an appointment- right?
Wrong. Or at least for me it’s not quite that easy.
The thought is just incredibly daunting. For starters, I am very picky when it comes to my doctors. I tend to search for the best of the best. Mostly sticking to teaching hospitals because those physicians tend to be the most up to date. They know the latest treatment and research (usually). I also examine their schooling, where they did their residency/ fellowship and most importantly- what the medical professionals say about them. (The best way to find a good physician is to ask other doctors and nurses who they go to? Who do they send their wife/husband to? Or their family members….)
Now, that’s just the first part. Second part is finding one who doesn’t get scared off with my past medical history or frustrated with my illness. Lastly, it’s finding a doctor who understand the uniqueness of my condition, my medications and my incredibly weak yet overactive immune system. (Not to mention it’s daunting for me to start from the beginning and go through all my past medical history— it’s just… well overwhelming not only for me but for them too.)
Now the second part might seem silly but trust me, that is the hardest. Back when I was first diagnosed my pediatrician was scared. That was the first time I realized this could become an issue. She freaked out with my blood work results while I was in the hospital— leading to a complete fight between many physicians. Later on, after the transplant she said, “you’re a once in a lifetime patient for pediatricians. I’ve never had a patient that sick before. Most pediatricians can go their entire career without having a patient go through something (autoimmune renal failure) like that.” Well, after transplant I would be the one informing her that “I wasn’t rejecting” and that it “was okay.” She freaked out with every little thing.
We scare Doctors.
I’m going to post an article that generated a lot of interest. This post, I read back in 2010 and felt it might help me in my search for a new doctor, giving me some important things to remember. But man, some patients were fired up over it. I on the other hand understand Dr. Rob and where he comes from. I have doctors who want to fix me. Who have sat there and told me that they too are upset. They have hugged me and cried along with me in frustration. And came out and said I challenge them because they can’t figure it out and all they want to do is cure me. I’ve also had doctors give up on trying to help. Lastly, I’ve also had doctors scared of me in other ways- such as my medical history.
A Letter to Patients With Chronic Disease
You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?
I can’t imagine.
But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.
You scare doctors.
No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.
But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.
And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.
Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain - is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.
So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.
So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:
- Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion. That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start. Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
- Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we.
- Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. The best care happens when a doctor understands the patient and the patient understands the doctor. This can only happen over time. Heck, I struggle even seeing the chronically sick patients for other doctors in my practice. There is something very powerful in having understanding built over time.
- Use the ER only when absolutely needed – Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. They went into their specialty to fix problems quickly and move on, not manage chronic disease. The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
- Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
- Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.
- Forgive us – Sometimes I forget about important things in my patients’ lives. Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well. Sometimes I avoid people because I don’t want to admit my limitations. Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded. Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.
I’m off to Nashville today! Cowboy hat and boots are packed! Nothing much to report except yesterday wasn’t too great of a day. Fevers, pain, fatigue and vomiting sort of occupied my entire day. Kick in already Arava! Anyway, enough about that….have a great weekend everyone!
I remember reading that hilarious phrase on some forum years ago. A girl was talking about how she gets so annoyed when healthy people give her medical advice and that she thinks she’s going to start charging!
Lately, I haven’t been feeling the best (past 2 months). Lots going on so obviously lots of “advice” gets thrown around. Take for instance, I have been vomiting fairly often recently. “Oh, you’ve got the stomach flu.” or “That sounds just like a stomach virus to me.” Eh, maybe I say… as I hide my eye roll. “You just need some sprite to help settle your stomach.” If only sprite was the answer….
It’s just hard for people to understand. If they themselves have never been chronically-ill then it’s nearly impossible to understand. Even for my parents too. Take my dad for instance, he even has a hard time understanding and he, himself has a condition called Polymyalgia Rheumatica and he’s a diabetic.
When I knew the dreaded day of “quitting my job due to health reasons” was approaching, I decided to move back in with my parents. I needed help and I was also a little nervous about being able to make my monthly rent payments. Well, my dad had such a hard time seeing me everyday. “Mandy, do you have the flu?” “Mandy, what are the doctors saying about your fevers?” “Did you call the Doctor? Why can’t the doctors help?” Everyday, he would stand there scratching his head as he watched me.
Just as my dad, who knows my health history is perplexed, so is everyone else. When you hear vomiting you assume “stomach flu” even when I tell them it is just “my disease” they blurt back, “no, sounds just like a stomach bug.”
Sometimes, I wish they were right ….
Well, my disease is up 3 to nothing. I struck out at both appointments yesterday and then again when I got home.
I was originally diagnosed with Osteoporosis at 26 years young. Due to my age, at the time we opted for no treatment. Just a watch and wait approach. Obviously if I had a fracture then we would be forced to treat.
Well…. my scan didn’t look so hot yesterday. I had a 9% decline in my already brittle bones…. which means I am probably forced to begin treatment now. Boo!!!! I really don’t like the idea of being placed on a bisphosphonate *medication to treat the bone loss in osteoporosis* There just isn’t enough research on young adults like myself being on these medications. Additionally, there is concern about using these meds if young females are planning to have children one day. Ugh, I have lots of worries and concerns- so cross your fingers for me!
She (bone and mineral specialist) ran some blood work checking my bone turnover and also just double checking my parathyroid function. I’ll hear from them next week and then have a follow-up scan and appointment in 6 months.
Next, I moved along to the Rheumatologist appointment. The rash on my legs was inflammation in my blood vessels. Good news is that the rash is starting to turn brown which means it’s pretty much over with!!! Yay!!! I’ll have the area remain for the next month but she’s worried it could start up in other areas. Baby aspirin prescribed as precaution since I do have a history of blood clots.
Joints and salivary gland is a bit inflamed but the good news is— my fever was down in the 99 range! We are hopeful that this recent 2 month long flare is due to a medication switch. So hopefully I should be much better in about a month or two. Again, fingers crossed. I should hear from the Rheum in a few days with the results of my blood work (yes, I had to get stuck twice today) and then I will see her again in clinic in 3 months…. unless something comes up that is. We will decide then if we need to switch back to my previous treatment or start another medication.
My 3rd strike today was after I got home. The all day hospital event took every piece of energy out of me that I had to lay down (or I mean pass out) from exhaustion. Needless to say I couldn’t get any work done.
Oh well…. you win some and you loose some. Let’s hope today is a better day.
Gosh I’m glad I have Nashville planned… I need some joy after today. Friday can’t get here soon enough. Having “event’s” scheduled comes in handy after days like today. Thanks D for your birthday celebration- it kept me up yesterday and I can’t wait!!!
Gotta run now. Since I didn’t get anything productive accomplished yesterday I need to get to work. Just hope my body allows it!
Daily Dose: Today I am thankful for my friend Leanna and her thoughtfulness- she is such a caring friend. For my mom for doing my laundry yesterday- thanks mom. And for dominos because they now have a gluten free crust.
So, I’m still recovering from the big Chi-town weekend. Well… actually I am taking it easy because I have another wild weekend planned. That means reserving my energy. If I don’t necessarily need to do something then I’m sitting it out this week. You see, my best friend of 16 years is celebrating her 30th Birthday in Nashville this upcoming weekend. I know- right? Even healthy people have a hard time doing back to back trips. What am I thinking?
It shouldn’t be too bad. I actually love to travel. Planning things (especially trips) gives me something to look forward to. One thing I’ve learned, when you’re Chronically-ill you need something exciting planned and placed on your calendar. It keeps you moving. Keeps you looking forward to tomorrow because tomorrow you are just one day closer to this “event”. And this “event” needs to be an exciting one too. One that makes you smile thinking about it.
Sometimes when days are filled with fatigue, pain, fevers and all the other nonsense it’s hard to always remain happy. We need something that will truly make us happy and happy just thinking about it. So needless to say, this upcoming event has me smiling in anticipation.
For me, if I could find people to go with—- I’d travel at least once a month. Any takers?
This time though, I’ll go home when my body tells me. I’m playing it safe this weekend. It could potentially really knock me back—- so I’ve really got to get along with my illness.
Last weekend I ran into problems because when I first said I was leaving Friday night, multiple people wanted to walk with me. “Girl, you’re not leaving alone— let me walk you back.” Obviously, I wouldn’t let them. One thing that I have trouble dealing with is allowing people to help. Mostly because I don’t want to be a burden I guess. I didn’t want my friends to have to walk me back and miss out on the fun. So instead, I opted to stay out 2 hours extra just because I didn’t want my girlfriends to miss out on anything.
I know… I have some things to work on with that. Good news is, I’ve got some great friends who are always looking out for one another. But, I felt pretty confident to be able to walk the streets of Chicago alone. I mean, I grew up with two brothers and I can throw a pretty good right hook if need be. Besides, the streets are always packed so it’s a bit different than say walking St. Louis City side streets after hours.
Anyway, gotta run! Have a busy day scheduled. I’m getting a bone density test at 9:40am then seeing my Bone and Mineral specialist (my osteoporosis doctor) and finally my Rheumatologist (autoimmune doctor) right after at 11:40am. Wish me luck! Fingers crossed that my bones haven’t gotten worse and that this vasculitis rash (to the right) isn’t anything to worry about. Then I am ending the day with work! Little time to rest so lets hope my body cooperates!
P.S. Do you sometimes feel like when people want to help then you’re a burden? How do you deal with those situations? Help a sister out and comment below. I could really use some advice.
Daily Dose: Today I am grateful for having my bone and mineral specialist. She’s one of the best in the country so I’m very lucky to have her treat me. For flowers and how they brighten my day. And lastly, I am grateful to be alive.
CAN’T WAIT TO HIT THE HONKY TONKS THIS WEEKEND! WATCH OUT NASHVILLE~ HERE I COME!!!
This past weekend my friends and I headed to the windy city, celebrating our friend Tori’s Bachelorette Party! While I was extremely excited and anxious to get the party weekend started- I also had to weigh the pro’s and con’s! Like many chronically-ill people, there comes a point when we have to face the facts and listen to our body.
The past month and a half my “health” hasn’t been the best so initially my mom voted for me skip the festivities and just stay home.
What fun is that?
I see her side, and of course she thought partaking in the wild weekend could potentially land me in bed for weeks. It’s happened in the past- actually, it’s happened a lot. That was before. Prior to me “listening” to my body. You know, obviously I have to push myself still. If I did listen to my body always I’d never get out of bed. Like most of you, I rarely have a “good day” so if I always listened I wouldn’t get anything done! And if I fully listened then I would have followed my moms advice this weekend.
I guess you could say I used to play tug-of-war with myself and my illness. I’d pretend I was “normal” and could actually keep up with my friends and their wild shenanigans. If there is one common denominator between my friends and I—- it’s partying. WE LOVE A GOOD PARTY.
A few years ago I realized I had to actually be-friend my illness. I use to hate it (it’s now a love hate relationship). I use to fight with it and push myself to extremes. I wanted to do all the things I loved and be that same person I use to be. Doing so created complete ruckus.
I’ve played the whole rebellion card. I’ve tried denial. I’ve attempted the mind over matter- “let’s just push through it and then you’ll get better”. Well… all those things clearly didn’t work for me.
Through the years I’ve learned that me and my illness need to get along. It’s not going anywhere so we need to become friends and start working together. For some reason when you have an illness at the beginning you are so fired up to overcome it, “become a survivor”, “not let the disease win” and so on…. Well, I use to think that becoming friends with my illness meant I was giving in, letting it win. Totally not the case anymore… in fact, this friendship thing is working out pretty darn well!
HOW DID IT WORK THIS WEEKEND?
Well, it’s a give and take. Like, you scratch my back and I’ll scratch yours sort of thing. In order to please my illness so we could work together for the bachelorette party weekend, I had to rest more frequently the last 2 weeks. That meant going to bed on schedule, getting a good nights sleep, and skipping some STL Cardinals baseball games and other events.
THE BIG WEEKEND WAS FINALLY HERE
We arrived in Chicago around 3pm. All the girls were staying in a condo. 14 girls. Due to this, I knew that I couldn’t stay there with them. It would have been very fun to stay in the party palace but I had to please my friendship with my illness. It was going to need rest periods which wouldn’t happen in the packed condo. I stayed at a hotel. This allowed me a good nights sleep, rest periods and away from the peer-pressure of trying to keep up with the crew.
We had some cocktails at the condo prior to heading off to dinner. The girls were sporting their dresses and Tory Burch heels while I rocked some white jeans, a mint blue top and flats. Due to the unsightly bruises that line my legs and the sexy mottled rash I tend to always keep them covered. I also learned long ago that heels and joint pain don’t mix. I know that a night in heels results in pain for days… so flats it was!
Not feeling the best that night I knew cocktails and I were going to butt heads. So, keeping it to a 1 glass of wine minimum was a must. After dinner we started the bar hopping. The live band was playing all of our favorites- which was great but in a bar filled with 20 year olds, knowing all the lyrics totally dated us!
My heart rate and blood pressure were out of whack so I grabbed a seat and laughed as the girls dominated the dance floor during “Come on Eileen” and “wild ones”.
Finally hopped into a cab and made it back to the hotel around 1:30am while the rest of the girls headed off to another bar which was open “late night”. I stayed out about 2 hours past when I knew I should have went home. I ended up paying for it—- was tossing and turning all night. Terrible stomach cramps, fevers and overall aches and pains were taking over. I ended up vomiting a couple times and by 6am I was finally resting comfortably. (For some reason, I have been vomiting frequently lately— heading to the rheumatologist on Wednesday so I suppose she will be able to look into these intestinal spasms, bathroom & vomiting episodes more closely)
The girls were heading off to brunch Saturday morning. I politely declined. You see, I had 2 choices… and weighing the pros and cons I knew if I went to brunch then I’d be out for the count. Placing the do not disturb tag on the door I crawled back in bed to sleep. Needed some more rest so that I could attend dinner and cocktails Saturday night.
The girls headed to a street festival after brunch while some hit up Michigan Avenues magnificent mile. I again declined and continued my resting. I was dying to frequent Barneys and the other fabulous shops but doing so would have been too much for me. So, my disease won that round.
I literally stayed in bed until it was time to get ready. Saturday night, around 6:20pm I hopped in a short cab ride and met the girls at one of my favorite Chicago restaurants, Quartino’s. After dinner we headed over to another favorite, Vertigo Sky Lounge in the Dana Hotel. Feeling well rested with a stable heart rate and blood pressure I decided to turn up the notch and give it my all. Complete with drinks, dancing and good times. I knew I would pay for it but heck- you gotta live a little and I was willing to pay the price.
It was a fabulous weekend which ended at 12:35pm Sunday when my plane arrived back in the Lou. Of course, when I got home I needed a long recovery nap but all in all I feel okay. I think my illness and I got along pretty darn well this weekend.
Would I have rather stayed with the group? Of course. Would I have loved to keep up with their drinking and dancing and late night partying Friday- sure. Or the day time brunch, festival and shopping on Saturday? Definitely. But I try to focus on what I can do instead of what I can no longer do. Point was- I was there. Maybe not 110% but I didn’t miss it and I had a lot of fun! Now that I’ve officially accepted my limitations and am now “friends” with my illness it makes it easier to focus on what I can do instead of what I can’t do. Obviously I still have periods were I get frustrated- my nurse got an ear full last week! But we are all allowed a slip up every now and again- right?!
Have you learned how to weigh the pro’s and con’s regarding listening to your body? Strength is in numbers, so speak up and comment below. We can all help each other by sharing our aha’s!
Daily Dose: Today I am grateful for my friends for providing me with endless laughs and the ability to live vicariously through them when I have to “sit out” sometimes. For airplanes- and how I can get to Chicago in 55 minutes. And for how efficient the cab situation is in Chicago (St. Louis you need to step up your game!). Oh and I can’t forget my dad- super grateful he took time out of his day to pick me up from the airport.
Random Act of Kindness: Yesterday I gave a helping hand. The guy behind me was having some difficulty getting the bin ready to load to send through security. So, I assisted.