I must say that my latest symptom is not a whole lot of fun. This all over pain really bites. Before, the muscle weakness was pretty much an inconvenience – yes it sucked, but being in constant pain is well… a pain!

I have tried:

• OTC pain killers
• Prescription pain killers
• Prescription sleeping pills
• Heating pads
• Ice packs
• Massage
• EMS machine (electro muscular stimulator)
• Physical therapy
• Chiropractic care
• Topical pain medicine

Nothing seems to take the pain away completely and what does seem to make the pain tolerable doesn’t seem to last. I keep trying to push through the pain, take something to bring the pain down to a tolerable level and get on with things. But everyone has their breaking point. I thought I was building up a tolerance to the pain, but every time I seem to go a stretch without having to call in or cancel plans I hit a wall and I’m taken out of the game for a few days again.

What does it feel like? You know that achy feeling you have when you have the flu – it feels like that. Most of my muscles and joints hurt and I almost always have a tension headache. So imagine that feeling, and then it feels like I’ve fallen down a flight of stairs. Not a whole flight, just like 5 or like I’ve taken a tumble because I’m sore in addition to being achy.

So my latest routine to battle the pain is this: I do the nightly exercises and stretching as assigned by my physical therapist and chiropractor. I go to bed early so I can take a prescription sleeping pill so I can sleep through the pain and at least get a good night’s sleep and therefore I’m not sleep deprived. I get up after about 8 hours of sleep, I’m in pain. I immediately take my prescription headache medicine and an OTC pain killer. I do my morning exercises and get in the shower and hope that the hot water will help the reduce some of the pain. If by the time I get out of the shower the pain killers and hot water have not done the trick, I bust out the EMS machine or massager and try again to get rid of the aches and pains that way. If I am still in pain, it is time to call in to work or cancel my plans and place ice packs on the most painful areas to numb them because by this point I know I’ve lost the battle. The ice packs are like my white flag.

I was taking really strong prescription pain killers to combat the pain, but those were so powerful they left me in a daze and I was still completely useless. Plus it was rather depressing to have to be that out of it just to feel relief. So I decided it was not worth it to take the prescription strength pain killer because it just felt like I was putting myself into a coma like state. I’d rather be in more pain and at least be able to have complete thoughts.

I guess what makes this hard is that the pain is constant, yes, but the level of pain fluctuates. That is not fair – isn’t that like moving the goal post? I think this game is rigged!

Ok seriously - where is the doctor who inspired this character?

Surprise! I’ve been living with the wrong diagnosis for about 10 years! Wow – that news hit me pretty hard the first time I heard it back in January after my second muscle biopsy.

My neurologist in Vegas finally got Kaiser in California to release my medical records – which is something my local doctors have been trying to make happen for about 4 years! My GP was floored when she heard we had the records as her office had tried and failed many times to obtain them. As my neurologist reviewed my past medical history relating to my muscle weakness he discovered something odd. I had been diagnosed with Inflammatory Myopathy by Kaiser, yet the muscle biopsy they did 10 years ago to confirm the diagnosis had been negative. He said there was no way I could get a diagnosis of Inflammatory Myopathy with a negative biopsy. As all my symptoms fit Inflammatory Myopathy, he felt Kaiser must have screwed up my biopsy. So he did what any other neurologist would do, he re-ran all the tests, the nerve conduction study (ouch), blood work and the muscle biopsy.   

My appointment for the muscle biopsy results was about a month after the surgery. I had just about healed from the slice and dice they performed on my leg and was ready to accept a real diagnosis of Inflammatory Myopathy.I was even prepared to take on the steroids and their wicked side effects which would be the inevitable course of treatment along with physical therapy for Inflammatory Myopathy. My doctor took me into a consultation room to go over my biopsy results. He look dumb founded – not a look you want to see on the face of your neurologist. He said the biopsy results were once again negative. What? Blink. Blink. I’m not getting the punch line here. He said the biopsy showed no signs of inflammation therefore I don’t have inflammatory Myopathy. I sat there in actual shock. I had done the research, all my symptoms fit. All the things I was doing to relieve the pain in my legs fit with inflammation. I would take an anti-inflammatory and I had incorporated large amounts of blueberries (the natural anti-inflammatory) into my diet to ease my occasional discomfort. Was all this just a placebo effect because I thought I had an inflammatory condition? I just kind of stared at my doctor and he stared back with confusion and compassion – I thought he might cry. He apologized for not having the answers I was seeking even through it clearly wasn’t his fault. He said I needed to see a specialist either at the Mayo Clinic or UCLA. That there was no one in Vegas who could help me with my medical mystery, that he had exhausted all his local testing and consultation options. Not a surprise, Vegas is not exactly a medical Mecca – well unless, like one of my friends said, “you need a boob job.” My neurologist referred me to a neuromuscular specialist at UCLA (my insurance does not cover the Mayo Clinc – unless UCLA can’t figure out what is wrong with me first. But if UCLA can’t solve the puzzle, I’m pretty much screwed as another friend told me in only a way he could and I would have to agree with his observation).

So I have an appointment at UCLA set for May 7 – 8. There will be questions and needles and tests, oh my! They have already told me they will do a nerve conduction test during this visit. This leads me to suspect they will re-do all the tests including the muscle biopsy. Fun times, but I can’t live with the wrong diagnosis – clearly. And I can’t live in mystery because I’m getting worse. Each day is a struggle and with this newest symptom: all over pain, it is getting even harder to make it through each day and night. At least I can still type – I wish I could do more work from home. I really dislike feeling so useless and like I’m letting my team down. I kind of feel like I’m just struggling to make it through each moment until my appointment at UCLA, but it just the first appointment and I know I can’t expect answers or even relief out of that visit. All I can expect it to be is the first step in the re-diagnostic process. Or the doctors first glimpse at their next medical journal article.  

Anyone have a contact at House or Mystery Diagnosis who I can sell my story to in exchange for them paying my medical bills?

The tension headaches have resurfaced. I had an around the clock headache for about 4-5 months. It comes and goes now and the doctor has me on around the clock medicine to get me through each day and night. Along with the headaches has come all over body aches and pains – this is a new and not fun symptom. The pain keeps me up at night and keeps me from concentrating on things. I have finally resorted to taking a prescription sleeping pill at night just so I’m not sleep deprived. The sleeping pills have been working, for the most part – but last night and today were another fun filled trip to all over body and headache pain land. The meds help most of the time, meaning that when they do work they make the pain tolerable, but it has been months since I have experienced a pain free moment. I have to take each day at a time and sometimes each moment at a time. Here are the problems with treating the symptoms – it’s not a cure and the meds are so strong that if I take enough to make the pain go away I’m so zoned out I can’t do anything either. So my choices are pushing through the pain, which I do most days or taking so many meds that I’m a zombie.

The doctors here are at loss. They have no idea what is wrong with me or what to do next, so I have been referred to a neuromuscular specialist at UCLA. More on exactly why I’m going to UCLA and talks of the wrong diagnosis at a later date.

Stay tuned…

This is how I roll!

Walt Disney World truly does embrace the highest level of guest service standards, especially when it comes to their disabled guests. I was able to enjoy the parks as much as possible without being uncomfortable or in pain – for the most part.

 All the parks, restaurants, shops, transportation and many of the attractions can accommodate me. Yeah! 

Disney is so ahead of the curve when in comes to anticipating needs that when I requested a coach with a lift to take us to and from the airport the reservation agent suggested he place us in a hotel room close to the elevator!  

All the busses that travel between the resort, parks and Downtown Disney are ADA accessible. However, please note: the Disney Transportation busses are an older fleet of vehicles. If you are traveling in your own personal mobility scooter or chair, some of the lifts are only designed to carry 350 pounds as they were designed for standard wheelchairs only. If you are using one of these vehicles, I would suggest boarding only busses that have the ramp rather than the ones who have a lift. Also, if you are in one of these vehicles a lot of attractions require you to transfer to a standard wheelchair or in some cases a ride vehicle. You can ask for a Guidebook for Guests with Disabilities at Guest Relations in any of the parks – very helpful. 

The first day we went to Disney MGM Studios (soon to be renamed Walt Disney Studios or something like that). It is a fairly small and flat park so I opted to just walk on foot. Most of the attractions are shows so it was easy enough. I did however stop into Guest Relations (located just off the main entrance and to the left) and picked up a guest assistance card. This came in handy when it came to boarding “tricky” ride vehicles like the backlot tour bus or Tower of Terror. The pass is good for your entire stay and is accepted at all of the parks. The pass is not a “bypass the line for free” kind of deal – it is really designed to help you avoid stairs and other obstacles. And with only two people in our party, Cast Members were more than willing to help us out.  

The second day was a little tougher. We went to Disney’s Animal Kingdom. This is the largest of all the parks and oh yes, there are HILLS. Since I did so well at MGM I thought I could tough it out at AK. Bad idea. Between the distance, the rain and the hills, by mid-afternoon I was in pain, wet and fairly miserable.  We went back to the resort I took some anti-inflammatory pills and hooked myself up to my EMS machine. A few hours later I was ready to conquer the Magic Kingdom – but not without a wheelchair.  They are not that expensive to rent – only $10 a day the first day and $6 a day each day after that. If you have someone willing to push you around the parks it makes for a much more enjoyable visit. They do rent those mobility scooters, they are a bit more expensive, $35, I think. I would suggest renting one at Animal Kingdom, unless whomever you are traveling with is up for a good workout. 

The resorts have wheelchairs you can borrow for free and even Downtown Disney has wheelchairs that can be borrowed.  

They tell you to get a fast pass whenever one is offered, but often if the line wasn’t long the Cast Members would just direct us to the wheelchair loading area and let us ride immediately. 

 I was very surprised there were so many attractions that let you stay in your wheelchair.  You expect most of the shows to let you just wheel on up, but rides like the Jungle Cruise, The Seas with Nemo and Friends, It’s a Small World and even Buzzlight year all have special vehicles that don’t force you out of your wheelchair.  

Disney even sets aside special viewing areas for their parades and other shows, like Illuminations at Epcot and Fastasmic at MGM. Please note that they sometimes limit the amount of guests you can take with you into these special viewing areas and through the disabled entrance to attractions. This is to keep these options available to people who really need them and to discourage large parties from just trying to bypass the line.  

All in all a great visit and I can’t wait to go back and now, with no fear of what I can and can’t do!  

I leave in a few hours for a week long trip to Walt Disney World in Orlando, Florida. I’m very excited to leave a huge chunk of reality behind.

Too bad I can’t leave the MD behind too – right? Disney is pretty good with making everything ADA compliant, but still the walking and the getting in and out of ride vehicles are challenging for me.

The MD is the only thing I can’t leave behind. So I’ve packed my supplements, my EMS machine and my disabled parking pass – see you when I get back.

“Man these stairs are a bitch to climb – I’m just so out of shape!”

That’s what I thought. My realization that something was wrong with my body didn’t start with noticing the muscle deterioration, it started with headaches. I woke up one day with a terrible headache, so bad that I couldn’t go to work. It wasn’t a migraine from what I could tell even though I had never had one before. I wasn’t sensitive to light or anything, my head just ached. I stayed home but couldn’t get any rest because the pain in my head kept me from sleeping. I finally went to bed later that night but barely slept and woke up the next day feeling just as crappy. This went on for 2 week straight. That’s right I had a headache constantly for 2 weeks. Over the counter medications did nothing.

It was time to go see a doctor. Having had a childhood friend die of a brain tumor that started with headaches made me panic a bit about my situation. Having an HMO meant that I saw a different doctor every time I went in. Which resulted in a different theory every time I went in. They prescribed powerful pain killers and told me I had everything from caffeine withdraws to cluster and stress headaches. They even thought there might be a gas leak in my apartment or my place of employment. The gas company came out and gave us the all clear – a gas leak was ruled out as the culprit. They ran all sorts of neurological tests including the dreaded MRI and CAT scan. During all the testing, they finally found something that got rid of the pain for about a day and knocked me out at the same time which at least allowed me to rest while all this was going on., it was some sort of shot that would knock me out with in a matter of minutes – good stuff!

The good news was they ruled out brain cancer, the bad news was they still didn’t know what was wrong. The testing and referrals continued. In the meantime I grew weaker and weaker. Getting out of chairs became more difficult, climbing stairs became a chore. I chalked the weakness up to being out of shape and spending so much time in bed when they gave me my magic “headache go away shot” which was now being given to me about 3 times a week.

It wasn’t until I was in a routine visit with one of the specialists that he noticed I was having trouble getting out of the chair in the examine room that we were on the path to discovering the MD.

No one has ever been able to explain the headaches and now I get them about twice a year and they only last a few days. The best part is I can usually numb them by taking a few over the counter pills.

Maybe the headaches were some sort of chemical reaction to the changes going on in my muscles; maybe they were some sort of internal fire alarm that got my ass to the doctor. Whatever they were/are they started this journey and pop up every once and awhile to remind me how it all started with headaches.

Taking a page from Annette’s book (or blog to be precise) I’ve decided to start writing about my life with MD and how disease changes almost everything. That’s right; I’m outing myself as a person with muscular dystrophy. You have no idea how many years it has taken me to be able to say that. I have muscular dystrophy, I am disabled, I am crippled – and yes, it sucks almost all of the time.

For years I hid it as much as I could, lying about why I had trouble with stairs. The lies came easy, “I twisted my ankle or my foot is asleep.” And people seemed to be content with lies. It wasn’t until the disease progressed to a point where I couldn’t hide it anymore that I had to stop lying to myself as well as everyone else.

I got a ton of support from my sorority sisters, who were some of the first new people in my life I told (new people meaning people I met after the disease struck). And to this day they continue to support me. Someone will pick something off the floor that I have dropped, or another sister will take the elevator with me so I don’t have to ride alone, they understand I can’t help with the physical stuff or participate in certain activities and have always been great about letting me take on the “clerical and organizational” type duties. My coworkers pretty much fall into that same category of understanding. Whenever we are walking in a group, at least one person will lag behind with me to keep me company. In a lot of ways I am lucky in that the people I work with or volunteer with are understanding.

I have a feeling this blog will unfold like a non-linear film. I predict I will go back and forth in time from the first signs that something was wrong to today’s good and bad moments.

I’ve lived in silence and with lies for too long, and I’m finally beginning to understand there are people out there who accept me and my disability. There are people who want to know more and I hope to be able to give those who want to know some insight into my world, to my life with MD.

It is not my intention to make people feel sorry for me, in fact that is the very LAST thing that I want. What I hope this blog accomplishes is to open up conversation and understanding and maybe, just maybe someone else out there will be able to relate to what they find here. That being said, I feel it’s important to address the darkness that comes with disease. There will be times when the disease gets the best of me, mentally. Please don’t mistake these times for a cry for pity, rather a request for reassurance that I’m not alone – that’s all.

I hope you stick with me through this journey because I have no idea where it will go, but wherever we end up at least you know I almost always get the good parking spots!