You are currently browsing the category archive for the ‘Challenges & Frustrations’ category.

That’s the word rolling around in my head today … along with a wicked sinus infection. (Whoever says that stress doesn’t make us more susceptible to illness is wrong!) So because I am hurting, maybe the word hurts me a little more than it should. It also hurts because I’m the one in the family who has always been especially conscious of making the healthiest possible choices. And yet that’s what we were told yesterday. I am uninsurable. Truth is I knew this was the case. Hubs was in denial, and wouldn’t believe me … but now we know for sure that it’s true.

Why does this matter? I mean, don’t we have jobs that give us health care? Well actually, no we don’t. I am self-employed, and not really interested in closing down my thriving business even if I thought I could get a job in my 10-years-ago field of expertise. And the industry I currently work in isn’t known for providing benefits – most people working for someone else are independent contractors. And my husband joined the ranks of unemployment in April. He’s been searching for another position diligently, but it’s been a struggle (and that’s a whole other blog post!). So if he doesn’t find something and start working within the next few weeks, we will be uninsured starting in January 2013 when our COBRA runs out.

Because I know you’re wondering, we have a state-sponsored COBRA plan instead of the Federal COBRA. His last employer was too small to be required to offer the Federal 18-month plan. And frankly, we are lucky to have this at all. All $1500 per month of it … ugh.

Knowing all this, we’ve been doing some research and applying for individual plans. The insurance company will call Hubs and ask him a lot of questions about his medical history. But they don’t want to interview me. He kept saying “it’s because you told them what they need to know …” And I reply, “Yes, that I have RA and they know they are going to deny me.” And he kept floating on that river in Egypt .. da Nile.

Then Tuesday night a friend (who also has a pre-existing condition) gave us the name of her insurance broker. It’s the conversation with him that put “uninsurable” on the table. He says there’s a plan with “guaranteed acceptance” that will take me. But will we be able to afford it? Will the job interview Hubs has next week pan out for us? What comes next …?? These are pins and needles I can do without … thank you very much. So cross your fingers for me and all the other uninsurable people out there.

<<political warning>> And please please please remember that voting for state and national politicians who support Affordable Health Care is one of the ways you can do something good for those of us with uninsurable illnesses we did nothing to cause based on our lifestyle.

 

This is a short, but vital, post. If you’re anything like me, you’ve had more than your lifetime’s share of needle sticks. Chronic pain / illness patients get a lot of blood drawn, right? Well, I’ve been getting blood drawn at my family practice doc’s office for the last few years. But the last time one of their nurses drew my blood, I had a 3″ x 2″ bruise AND a huge lump! If that wasn’t enough, I actually had a needle scratch near the site too. Clearly, this nurse was NOT skilled at venipuncture. And the lump? It was there because she not only punctured my vein as she entered, but then kept on going and punctured the other side of the vein too.

This was of course completely unacceptable. I called the doc’s office to let them know (kindly) that this particular nurse had been sorely lacking in skills. And remind them that it’s especially unacceptable on a patient who is immunosuppressed. They did apologize, and suggested that I request a different nurse the next time. Yup … you bet!

Instead, I decided to do what I had done some years ago. I decided to make friends with some people who do nothing but venipuncture – at a local diagnostic lab location. I chose Quest Diagnostics because they had been processing the blood from the doctor anyway. So I assumed (rightly) that my health insurance would cover that lab. And let me tell you, this was the right choice!

The lab tech was fantastic! Friendly, professional, no waiting, and most of all … really, really skilled at venipuncture. The bruise is only the size of a pencil eraser, if that! Minimal pain and maximum patient satisfaction. Definitely worth the switch!

I haven’t posted since May – mostly because life has been good and I’ve been busy. I did have an experience with the evil skin infection cellulitis, which thankfully resolved itself pretty quickly. But mostly the last few months have been full of big business decisions and happy family times.

Poor car, poor me ...

Until this morning … I was returning home after a lovely yoga class and was in a car accident. On a scale of 1-10 with 10 being the worst, it was about a 3 to 4. NOT what I was hoping for from my day. My car is really a mess thanks to the winch on the other guy’s truck. It’s safe in the towing company’s storage lot for now while I wait for the adjuster to assess the situation. And I am sitting in bed … waiting to hear if I broke any ribs. Or really to find out if my seatbelt broke any of my ribs!

The accident happened in the middle of a string of rainy days, which were already making more achey than normal. Now I am having trouble moving in some directions with this rib pain. Strangely, there’s no bruising on the outside. It’s the perfect example of “But You Don’t Look Sick.”

Interestingly, this accident reminds me how closely connected my core muscles are to my ribs. The hardest part of this pain is what happens when I try to lie down or rise back up from horizontal. I just can’t access my core muscles to help me. But I’m grateful for strong legs and arms to help support what my core can’t. Now I have to be careful not to strain those joints and muscles.

As I said to the x-ray tech, “I feel like a feeble old lady.” And as my spoonie peeps know, we all have been there and we don’t like it at all!

And here’s the rest of the challenge. Much of my ability to see massage therapy clients depends on my ability to move freely. For the last eight years I’ve been able to work pretty darn consistently even with RA, but I cancelled all of my clients today. It’s been quite some time since I’ve had to do that. And as a small business person, I don’t have paid vacation or sick time. So I’m pulling out all the stops to get better soon!

One of the things I always tell my clients is that the MOST important time to eat healthy food is when your body is trying to heal. Your body needs all the fuel for its building blocks to rebuild the injured tissue … and this doesn’t come from cheeseburgers and french fries. It comes from fresh veggies, whole fruits and some lean protein. So although my mom suggested hot cocoa (and I may do that!), I am also making sure I eat super healthy. In fact once I made it back home, I made myself a green smoothie right away. Some part of the reason was to have food in my stomach to calm my nerves. Another part was to get food in my stomach to take my meds. And then the general need to feed myself the healing food!

Send me some prayers and healing thoughts if you would … and I’ll really really try to get back here and update you on my progress. Thanks friends!

I bought three new turtlenecks today. Except for one purchased last year with outdoor activities in mind, these are the first turtlenecks I’ve wanted or been able to wear in 7 years.

So who cares and what does this have to do with RA? Well, about 7 years ago I noticed that entire body temperature had increased a few degrees. Not hot flash style increases – I’m too young still & this was 24/7/365 change. I was more likely to have a tank top on under a sweater than a turtleneck.

The change seemed permanent and I donated or pitched my turtleneck “collection” which had been extensive. But as fall and winter have approached this year, I am cold. Not just chilly on the edges, but cold cold cold.

My theory is that about 7 years ago RA started to generate subtle inflammatory changes. They were inflammatory enough to raise my body temperature. Now that I am taking the bundle of RA medicines and my disease has become better controlled, the inflammation has lowered. It just doesn’t seem to be heating me up any more.

I’ve been thinking that RA was busy building inside me much earlier than I realized and this is also a bit more confirmation.

So I’ll wear and enjoy these turtlenecks — at least until I start hot flashing in a few years!!

Sometimes I tell someone I have RA and it doesn’t even register on their face. Like I just told them I have a cold or silver/gray hair. Colds go away in 10 days (if we’re not immune suppressed), but RA is forever.

It’s just frustrating … so I thought I’d share with you.  Even though you didn’t ask.

I wish I could tell the person that the easiest response is, “So what does that mean for you?” They don’t have to know anything about RA to ask me that. And I can choose how much I tell them … which depends on mood and the “need to know” factors.

Phew. Got that of my chest. Thanks for listening.

As a holistic health coach, I am blessed to be part of a large and vibrant community of progressive-thinking folks. I have learned a tremendous amount about nutrition and ultimately about wellness from my training and experience. In fact, it’s this kind of naturally-based healing/health that I have focused on my whole life.

Many years ago I was a leader for Weight Watchers … my first experience with “diet” and nutrition programs. I’ve done yoga for years, and spent a lot of time at gyms working out before that. I’ve had acupuncture. I’ve trained in Reiki and receive it regularly. I’ve received other types of energy healing regularly for years. I’m a massage therapist who depends mightily on a weekly massage (and have for 6+ years). I love having green smoothies and shopping at my local farmers’ markets. I believe in the power of prayer. And for the most part, I’ve always tried a lot of natural healing methods before turning to medical care.

And despite all this stuff … the RA symptoms started. Reiki and massage didn’t help (although they certainly didn’t make anything worse). I tried to keep eating healthy, but my ability to exercise became severely limited. I had to cut my work schedule back by 20% to keep the incredible pain in my hands at bay. Symptoms didn’t get better when I wasn’t working either. Weight gain ensued … and it was all depressing. I hung in there with the natural healing methods as best I could, but I knew it wasn’t going to be enough. I’d reached a fork in the road.

Choose left or right?

It was time to pursue medical diagnosis and treatment. You’ve read about that process here on the blog, so I won’t repeat it. But let me summarize the results: I feel a thousand percent better! Practically my old self. I continue to pursue all my natural health and wellness methods, which support the medical process that keeps me going.

What I discovered is that it isn’t a fork in the road, but a new path. I don’t have to give up the things that have always helped me. I don’t have to feel guilty about getting the medical treatment I need to be well. In fact, my rheumatologist has been pretty darn impressed with my incredibly low inflammation levels. The other RA indicators are still positive, but my liver is processing the meds in the healthy way and my overall symptoms feel mostly under control.

So for those who might judge because I’ve chosen to integrate these (sometimes opposing) paths … take a walk in my shoes before you tell me I’ve done myself wrong. And remember, I wear mostly “sensible” shoes now … not the beautiful higher heels of my youth. So it may not be as easy or much fun to be in my shoes … but I’m happy here. Isn’t that what life is all about?

**This blog post is part of a larger Blog Carnival organized by Rheumatoid Arthritis Warrior, Kelly Young. Please visit the other posts as well … this carnival’s topic is “Resistance to Rheumatology Treatment”**

When I turned 40 my aunt told me that my body would never be the same again. That it would change unexpectedly and often. That everything I thought I had figured out would become wrong. That these adjustments would keep happening every year or so for the rest of my life. None of that information was easy to absorb or adjust to! And that was before the RA symptoms started!

Here’s an example of my “new body.” This morning my pain alarm woke me up. Truthfully, it woke me twice (at least) last night and then once after it was light outside. I’d just like to know who installed this alarm. How do I control it and could I even disable it? It’s bad enough to use an alarm clock to wake up every day, but having one inside my body stinks!

Another example is that lately my relationship to food has changed. I love delicious food. But I’ve been wondering why I find most food a lot less interesting. Maybe it comes from meds or maybe just from dealing with so many annoying issues related to RA all day. Sometimes I just don’t have the energy left to get excited about meals. Except possibly ice cream … LOL.

I have always been a bit ADD, hyper and not very good at sitting still. Now I treasure those days when I can fit a nap in during the day. I know that I have to take a break to sit down or lie down during many of my former “normal” tasks. I am grateful that I can still accomplish a lot, since I know a lot of RA patients aren’t able to do their everyday stuff. But it all just takes so much longer now.

Does anyone know where my body went … because I’d really like to trade this one for the other one. Okay? Thanks. Bye.

This weekend I’ll be traveling to another state to visit with my mom. While I’m looking forward to seeing her & spending time together, it brings up three significant stress points as well.

1. The travel process itself
2. Her RA situation
3. My RA – especially relevant to the tasks she needs my help with

I’ll be traveling alone as I typically do for visits to see Mom. Keeping luggage light and easy to manage should help. Even so, I always check my bag so I have less to wrangle during layovers and airport navigation. And it turns out my first day of travel will be a 11-12 hour process. It’s mostly a very long layover, but airports just aren’t very comfortable after a couple of hours. Honestly, just the length of the day is daunting. Thankfully the trip home is more direct and shorter in duration – because by then I am sure to be tired!

I am quite comfortable in my own yummy memory-foam bed. Yet this trip will include two separate guest room beds of undetermined comfort/discomfort. Hoping there will be lots of pillows available so I can prop myself into a comfy position on my back. Side sleeping is still problematic due to shoulder flare issues. But hey, at least I don’t have to factor sharing the bed with hubby into the equation! ;->

My mom has RA that has gone virtually untreated medically due to her religious beliefs. She’s had some type of RA-related symptoms for nearly 10 years, but likely has had the disease for much longer. Her hips, feet and knees are so damaged that she’s now wheelchair bound. Other joints are so damaged that at 69 she’s dependent on nursing care for most of her daily functions.

I can’t begin to describe how difficult it is to see Mom like this. I just don’t know what the next RA-related issues will be for her, but they are bound to be uncomfortable and scary. And that’s probably a massive understatement.

I have chosen not to tell her about my RA diagnosis. I’m not sure how much longer I will keep her in the dark, but for now the choice makes sense to me. I am doing well with my various medications, and perhaps she won’t notice for a long time.

On the other hand, the list of tasks grows longer and longer as we approach the visit. I don’t really slow down or stop and rest enough. And on my last visit the pain levels skyrocketed and I hardly slept at the end of the trip. Since then I have learned to take better care of myself, so I just need to stay strong enough to make sure I slow down to rest during the day. I am still struggling with this at home … so who knows how it will go when I’m with Mom.

Maybe I’m just a big whiner … because in the big scheme of things I’m still doing a lot and mostly pain-free. But every day I still only get so many spoons, and traveling sure changes how they get used. Thanks for listening!

They say that nothing is ever simple. And that’s been the story of the last couple of Sundays (my MTX day) for me. Sunday of Week 4 was pretty good … if you don’t count the two feet of snow that fell the day before. Sunday of Week 5 was pretty nasty … but not really because of the MTX.

I’m still finding that the ginger nearly eliminates the nausea. And that MTX makes me a bit more tired than usual.

But the biggest lesson over the last two weeks has been what my limits are. The snowstorms of February 2010 taught me that I may be able to do something I used to do (like shovel snow for an hour), but that the price I will pay is a steep one. And because I work in a business where happy clients are essential to my livelihood, it’s been a challenge to figure out how to reschedule people and not hurt myself even further.

I have had alternating days of great accomplishment and productivity. Followed almost immediately by days of incredible fatigue and frustration. But somehow this still feels like an improvement.

Last summer when the RA hit my life with full force, I had a very simple rule. Do only what is necessary and take it very slow. My main symptom was overwhelming fatigue. I did have some joint pain, but it was 20% of the issue while fatigue was 80%.

Then when I began to take medicines for the RA, the rules changed. The fatigue levels are improving markedly, and actually that is making it harder. I find that I can do more, but that this is making the pain levels go up quite a bit. So, the new rule seems to be do whatever I can one day but don’t forget I will pay for it the next day with exhaustion and discomfort. And if I go really nuts, I WILL be in pain.

My big challenge seems to be finding a balance of accomplishment and recovery. MTX day / Sunday seems to fit well as a recovery day. However, I clearly need more than one recovery day in the week. This is a very new concept for me … and one that will be another part of this luscious journey.

I am now thankful everyday for everything that I can do. I have clients, friends, and family members who hurt a lot more than I do. But every once in a while I just wish I could still do what I used to do — without pain and/or debilitating fatigue.

Here’s a little history (not that you asked!) … When I was in my 20’s I realized that I got depressed. I took medication and got counseling – both helped.

When I was in my 30’s I discovered that writing myself a “prescription” for exercise was a great anti-depression boost with no side effects. I have used exercise in combination with as-needed counseling ever since. And this strategy seems to hold my depressive tendencies at bay.

Since I started to experience RA symptoms, it has become harder to follow my “normal” exercise routine. At first I just pooped out and said, “oh well I’m just too tired for anything extra.” Definitely not good thinking for my mental or physical state! Since learning about the benefits of exercise for RA, I have re-tooled my approach.

Now instead of 4-5 days a week of hard exercise (90-min. Power Vinyasa yoga or workouts with a personal trainer friend), I am aiming for 5-6 days a week of light to medium exercise. So far that has included 1-2 days of Bikram yoga, a long walk or two, and some sessions with the Wii Fit Plus. I have to plan carefully because my job as a massage therapist is physical too, which tends to wear me out when combined with exercise.

I know this is a lot more intense exercise than many other RA’ers can do each week. And for that I am incredibly grateful. I will keep hanging in there because for me exercise is 75% about my mind and 25% about my body. I’d really like to avoid adding an antidepressant to the ever growing list of meds.

So I guess that despite the title … this turned out to be a lot more gratitude than woes.