For those of you who may be interested, posted here is a x-ray with dye contrast photo of the epidural needle in my lumbar spinal dura that my anesthesiologist placed there. I had this injection the first week of April and was honestly petrified to have the procedure done. With everything I have had done in my life in the category of health care even this fear seemed irrational to me, but there it was. Still I wasn’t going to pass up the odds given to me that the steroid would help me not only be able to walk again with much less stress and discomfort regarding my back, but also the potential for calming down my Fibromyalgia. I’m was all for tossing the infrequent but necessary use of pain killers that I had been recently and reluctantly taking under my doctor’s supervision. Most importantly I was hoping for an improvement in my personal quality of life. The negative and painful consequences that were mostly invisible to friends and family, were very much alive and hard to live with for my most awesome husband Jerry and I. After the procedure was done I walked out of the Surgi-center feeling hopeful and optimistic, a feeling I had been harboring but strongly trying to squash for fear the said possitive outcome would be a big let down.

The following 2 weeks after the epidural have been a series of personal and emotional ups and downs in realizing and living with these results. In a positive note there has been a huge improvement with the amount of back pain I was experiencing prior to the procedure, even a decrease in the level of nerve pain that would shoot down my back, attack my glutes, race down the nerve highway in the back of my thigh and calf and finish their red hot journey under my foot. The epidural has helped my pain levels and my mobility issues tremendously and I will sign up for another when the time comes, given I can have the same doctor administer it.

My Fibromyalgia seemed gorgeously calm at first and for a brief moment in time I drank that feeling up like it was the sweetest liquor I had ever tasted. No pain. Imagine. None. How many years had it been since I had that feeling? It was almost as if I had been transported into a physically strong and beautiful female version of Jake Sully played by Sam Worthington in one of my favorite new movies Avatar. I was a Na’vi! Of course some of it was from the pain medication given to me for the procedure, this I was aware of. Yet just as my anesthesiologist had said (he gave me a second and changed opinion of the outcome immediately prior to the epidural injection) my Fibromyalgia started sneaking out of the calming blue Na’vi body I was occupying, and reality slowly set back in. Whether or not the new Fibromyalgia medication I am on is partly to blame for the remaining Fibromyalgia pain and strength issues I don’t know yet. I do know my rheumatologist and I will be discussing this and more at my next checkup.

My arthritic and Fibromyalgia riddled body, along with the recent upsetting diagnosis of AIED and Meneire’s Disease have created a highly emotional journey in my life right now. I’m looking for a much needed rest stop exit from this particular unwanted and uninvited “bumpy highway”. May I find strength, acceptance, and a certain calm I know is awaiting me just around the corner. May those around me find empathy, love and a desire to accept and support if they so chose along with the knowledge that I am doing the best I can with what I have. So, who wants to join me in that grove of trees up ahead? There is a green grassy hill, plenty of cool shade and a ice laden drink waiting to comfort us both.

It all happened about 5-6 weeks ago. If I were to be sincerely honest with you I would say it all happened 56+ years ago, but I’m not going to bother you with all that history. 5 to 6 weeks and a rough outline of the story will do just fine. So, 5 to 6 weeks ago my doctor and I decided to change my medications we were using to treat my Fibromyalgia. Maybe some of you read my earlier post about this, titled “Massage Techniques” (talk about a lot of spam just from using that title! Good grief!). If you read that you will get a bit more history, if you want it, into what’s been going on with my health. If not, then hopefully you’ll get enough information here to follow along. The change of medications this time that my rheumatologist and I were changing were for my Fibromyalgia and Osteoarthritis, namely going back on Celebrex (for Osteoarthritis) after trying Voltaren and finding out it wasn’t doing the job. Then secondly, changing from Savella to Celexa for the Fibromyalgia eventually upping the dose, due to the fact that it wasn’t calming my Fibro down enough so I could walk, a task I’m still struggling with.

With the addition of the new drug Celexa and my old stand by Celebrex came a new set of symptoms that I thought were related to either the combination of the 2 drugs or something different entirely. This first symptom started out as Tinnitus, mild enough at first to cause my MD, during my visit, to say it was a normal change as we get older. The second new symptom was a feeling of fullness in my left ear, and the third symptom was a terrible case of vertigo leaving me unable to drive or walk. These 3 new symptoms caused my rheumatologist and I to make a few changes to my medication doseage to try and figure out what was happening. After living with these symptoms for about 5 1/2 weeks, and feeling like I had done everything I could to figure out what was going on I decided to head on over to an ENT, ear, nose and throat doctor.

For anyone who has dealt with severe Tinnitus, you can attest to not only the discomfort of the annoying ringing in one or both ears, but also the loss of “quiet” which a normal hearing person hears. Tinnitus or (ringing, hissing, roaring) is what a person hears when they have a lack of noise in a their ear. I had been dealing with that discomfort for the first week or so when along with it I got a new symptom, a feeling of pressure in my ear. Have you ever felt your inner ear pressure change when you’re taking off on a plane trip? Or maybe it has happened to you when you descend from the skies down onto the runway. This was the new symptom in addition to the intensely loud ringing and terrible vertigo I had been experiencing for quite some time.

It’s been a long time since I have had any kind of ear test so I was pretty surprised how involved it was. The total test time was approximately 40 minutes. Throughout that time I knew I wasn’t going to come through with shining colors. The audiologist was a young, kind woman. She was very thorough throughout her job and explained what she was looking for, the full range of high and low frequencies, as well as how well I performed while testing each ear independently. With each different set of specialized ear plugs that were placed in both ears, first then the left and then right, it became even more alarming just how bad off my left ear was. Once I was done with the hearing test I was taken to the ENT’s exam room to await his arrival and go over the results.

Our children used to go to this very ENT office, to see a pediatric specialist who is still in practice there today. My ENT was someone whom I had heard about, and is known as one of the best specialist’s in his field in our area. He introduced himself, apolgoized for having laryngitits which just came on that morning and proceeded to go over my health history with me. After I received a full exam he diagnosed me with AIED, or autoimmune hearing disease with the possibility of Meniere’s disease. AIED is a rare autoimmune disorder, meaning that the immune system attacks a part of the body. This attack on the inner ear results in a rapid hearing loss. Sometimes people with this condition also experience balance problems and many have pain. AIED is thought to be another condition brought on by several auto-immune diseases, Rheumatoid Arthritis, Lupus, or Sjogrens Syndrome. 2 of those diseases I have, so I suppose it wasn’t surprising, just shocking, and something I never even knew about. Meniere’s Disease symptoms are fluctuating rotational vertigo, fluctuating hearing loss, fluctuating tinnitus, and fluctuating sense of fullness. The ENT was not sure I had Meniere’s Disease but was going to treat me as if I had both AIED and Meniere’s.

As quoted from the CIDP International Foundation, found at http://www.cidpusa.org/index.html, “Until recently it was thought that the inner ear could not be attacked by the immune system. Studies have shown that the perisacular tissue surrounding the endolymphatic sac contains the necessary components for an immunological reaction. The inner ear is also capable of producing an autoimmune response to sensitized cells that can enter the cochlea through the circulatory system.” AIED can be treated with drugs. Prednisone, Methotrexate, and even Remicade, Humera or Enbrel are all drugs the doctor will use to try and correct the progress of this disease. If it is caught early enough the hearing loss may be reversed, or at least stopped from progressing any further. Not everyone is able to tolerate such strong doses of these drugs though. There is no cure for Meniere’s Disease, although treatment is often in the way of prescribing a diuretic, to treat what may be fluid in the inner ear, based on the theory that Meniere’s Disease symptoms result from excess endolymphatic fluid in the inner ear (“idiopathic endolymphatic hydrops”). While this is the prevailing theory, it is not the definitive theory or the only theory. Diet and stress reduction have also been practiced in treating Meniere’s.

My ENT placed me on high doses of Prednisone daily along with a diuretic and instructed me to return in 2 weeks time for another full hearing test and exam. He told me that in many cases his patients have responded well to the Prednisone, in other cases they did not. He explained if I did not respond to either medication, they would be stopped and I would need to learn to live with this diagnoses. If I did respond well to the treatment he assured me he would alter the medications and continue monitoring me.

Since my diagnoses, I have begun to experience the same sensations in my right ear that I now have in my left ear. The ringing has intensified, the vertigo is back, and I have that same muffled or full feeling along with pain. It feels as if my hearing is diminishing in my right ear. I am hoping that the recent Remicade treatment for my Osteoarthritis and the high dose of Prednisone along with already taking Methotrexate for my Rheumatoid Arthritis will halt both ears from becoming any worse and maybe even better reverse some the hearing loss, vertigo and pain I am experiencing. Right now I can still hear well enough to carry on a conversation if the speaker is aware I am somewhat limited by the amount of hearing loss I have, and that the surrounding noise levels can and do make a difference in not only how much I hear, but also in whether or not those noises are too distracting. I am still able to speak on the phone, for those of you who are interested in calling me, and hopefully I can get a hearing phone before or in case I have any more hearing loss.

So that happened!

It started quite some time ago when I began experiencing the unpleasant side effects of one of the newer drugs I was taking to treat the disease. I kept in close contact with my doctor and eventually changed from this new SNRI (serontonin-neropinephrine reuptake inhibitor) to another anti-depressant commonly use to treat Fibromyalgia. When the side effects of this new medication began taking its toll on me, my rheumatologist and I decided together to see how my Fibromyalgia would react without the aid of any medication, something I hadn’t done in years.

Going off these drugs must be done slowly, stepping down week by week until you are off of them. Even though I’ve been treating my disease with these medications for some time I would still have flare ups, some of them for what I knew at that time, to be fairly bad. By the second and third week stepping off this last medication I could tell the changes that were happening to my pressure and trigger points was unlike anything I’d ever experienced before. The hardest hit ones were in my calves and thighs, although my arms and shoulders were also experiencing extreme pain, tenderness and muscle weakness. And yet I honestly kept thinking it would get better, that I just needed to rest more. When I could no longer stand or walk because of the pain and weakness I figured it was time to call the doctor to make an appointment and had my awesome husband Jerry take time off work to drive me in.

I have been with this rheumatologist for a long time, trust her completely and was happy with our next plan of attack. Rest, change of medications, for both my fibromyalgia and my rheumatoid arthritis and a short course of steroids followed by a checkup. Oh and patience. Plenty of that. I am very fortunate I don’t have to work outside the home. Like I said before I am grateful and thankful for my awesome husband, without him I could not focus on my health. I am going to get better, it may take me longer than I like, but I am focused on that positive outcome.

For those of you who are skeptic about my course of treatment or who believe in alternative therapies, or even have a whole different idea of how one should go about treating this or any other kind of illness I will just say this. To each their own. I have tried many other kinds of treatments. I do not believe in using pain pills alone as treatment for my conditions. There are many theories on how to treat this disease, please do not judge me.

For some additional home massage treatment I use the items shown in the photo above. The hand held massager is one I’ve had for years, it is a Homedics brand and has several variable speeds. I have tried several other brands over the years yet keep coming back to this heavy duty massager as my favorite.

The tennis ball may seem like a impossible massage tool but placed inside a sock it can become very useful. Hang on to either end of the sock, lean up against the wall with the ball against your back on a pressure point and dig deep. Sweet relief!

The S Hook Massager can be found on line or at your local Mother’s Market. While not cheap, they work really well at quick release work on your pressure points. Excessive digging with this tool will only aggravate your pressure points so do be careful.

The large dense white massage roll is an excellent way to work on your back while getting an arm workout at the same time. They are also good for IT Band massage or glute massage. These rolls can be purchased on line or at a larger local medical supply in your area. Instructions on how to use them can be found on line.

I hope that by sharing some of my story you can better understand what it is like to live with this frustrating and silent illness, Fibromyalgia. Coupled with several arthritis’s, and Sjogren’s Syndrome it can be challenging at times. What you see is not always all there is. Be kind and patient, take time to look beneath the surface and I believe we will all be better for it.

Finally an answer. After years of grinding knee pain, stiffness and my knee giving out for no apparent reason my rheumatologist ordered an MRI. The results showed Osteoarthritis, which I honestly didn’t expect. I thought it would be rheumatoid arthritis. Since there is nothing one can really do that I’m not already doing, the immediate plan is to loose weight and then go through a series of Sinovisc injections to see if that will help. According to my doctor the results from the injections vary, not always towards the positive, so I will see if the much needed weight loss will help with some of the relief, and take it from there. So…onward and downward…with the weight loss.

My joints are a hurting…
My strength is reverting…
I’m really not slacking…
My arthritis’s attacking.

Wii Fit, then the gym…
Trying to get trim…
Working and resting…
Strive for the best thing.

So the insult was glaring…
The TV was blaring….
Too busy eh Pat?
You’re gonna get fat!

She hulla and hooped…
Till she was pooped…
Lunged and ran…
Yoga she slammed.

No, Wii will not beat…
Pat says…No Defeat!

Many people know very little about Fibromyalgia, and even fewer probably know that it has a long list of symptoms. I am among the many I am sure who have this horrid disease, to have a lot of those annoying symptoms. One of the most frustrating symptoms is being hypersensitive and startling easily (jumpiness). If you google Fibromyalgia you will find this symptom along with a few more that seem to go along with it, such as hypersensitive to light and sound. After years of doctor visits with many different specialists, being poked, prodded, and tested until my hair stood on it’s end all over my body and screamed “hell no more”, I have been told that I have probably had Fibromyalgia since I was very young, just never diagnosed earlier. Upon further digging on the net you might find that some sites claim that hypersensitivity can be linked to stress, trauma, post stress disorder and so on. I suppose also, if you knew my complete history, you might think the later would fit. Or at least add to it.

My most wonderful husband Jerry, can attest to this very annoying symptom, that of being hypersensitive. Over the years he has had to put up with me screaming out of fear just because we met in the hallway. Ear piercing loud screams if I didn’t hear the pitter pat of his feet on the carpet or tap tap on the wood floor before hand. Last night was no exception.

I’d like to add also that I believe in ghosts. Now that makes it interesting, doesn’t it? I think my most wonderful husband thinks I might be a bit crazy when I admit to that. Oh well. Can’t win them all. I’m not sure of my earliest encounter with a ghost, but I will share with you that when Jerry and I went out to sea to sprinkle Jimmy, our first son’s ashes, at sea, Jimmy spoke to me loud and clear. I came right home and wrote a poem about it. That very day. I’m telling you all this because it adds to the whole hypersensitivity issue. See what I mean? Want more?

About a month ago “someone” was flitting around the house while my most wonderful husband and I were watching TV. I never knew who it was, and I usually do know. At first I was scared, then I calmed down when I realized they weren’t out to harm me. And, my dear sweet deceased brother Richard came by for a visit a few weeks ago. But I digress. That will be for another day. Another blog.

So, as often happens, and as I have gotten older and can’t hear as well, Jerry can unintentionally “sneak up on me”. He’s tried many a tactics over the years. Sometimes he’ll say “boog-a-boo” as he enters a room, alerting me he’s nearby. Other times he’ll start talking before he actually is in the same room as me. He tries all sorts of things to make it be known he is nearby, probably so I won’t scream. Loud. Like I did last night!

I was entranced in writing a blog. Not this one. The night air was hot, so we had our big industrial fan blowing the cool night air in through the open patio screen door, making it hard to hear anyone, anywhere. Afterwards Jerry said I was looking sort of in the direction of the doorway, not that I was aware of doing that. Then without seeing him, I looked the other way. It was then that he said to himself “Oh boy, I am screwed.” I am not sure why at that point with that thought running through his head, he decided to lean in close to my left side and patiently stare at me. All the while I was unaware that he was even in the room. See where this is going? Ready? Wait….wait….

YUP! I screamed so loud and long that my voice hurt! And Jerry’s ear drums were pierced with the awful sound that echoed out the screen door into the night. Blood ran down the side of his whiskered face. (Ok, I am exagerating) Our neighbors probably thought I was being murdered. Maybe they thought about calling 911. It was that kind of scream. Long, loud and meaningfull. And embarrassing.

After an “episode” like that happens I am usually so embarrassed. At the time I am truly scared. My heart is racing as if I spent 30 minutes chasing Tom Cruise. I’m breaking out in a sweat like an old menopausal lady, and I have the look of true fear written in every wrinkle. Charming right? Oh well.

There is usually lots of apologies said, then some laughter, and hugging. My most wonderful husband is like that. Very understanding. Well, except about the ghost thing. But we don’t want to go there again. Do we?

ps The photo at the top of this blog is of Neil’s Mercantile in Standish, CA. My husband and I grew up about 1/2 mile from this now boarded up building. We used to wait for the school bus at the corner, not a lot of fun on a cold winter morning. I added this photo because it is said to be haunted. Cool. Google it. You’ll see. Or go here:

http://www.ghostweb.com/standish1.html

It’s always sad to talk about those we love who have passed away, whether recent or further back in time. It is within this framework of emotions that I want to express my grief over the passing of a family member, John Laxalt. John and his wonderful wife Candy were high school classmates of mine, both graduating in 1972, a year after me. They were both involved in school activities, John on the varsity basketball team, Candy a cheerleader or the “pep squad” as they called it back in the day.

John and Candy were a couple back in high school, as shown here in a photo taken from my 1971 graduating year book. Their photos filled the pages showing them in various school activities. I never really got to know them during the high school years. It wasn’t until my father in law Vern, married Candy’s mother, Jackie, that we became related and began to see and have a chance to get to know each other. In the last 6-8 years, approximately, Candy and I have had the unfortunate event of having even more in common, when she was diagnosed with Fibromyalgia. Candy has struggled for so long with the debilitating symptoms of this disease. And then the devastating news that John had cancer.

It just doesn’t seem fair sometimes, all the stuff that is thrown at us in life. It feels as if too much tragedy happens to those who don’t deserve it, and the ones that are careless in life skate through it with nary a scratch or personal hardship. Maybe karma will catch up to them. Who knows. All I know is I wish peace for John. And for Candy, I hope somehow she will be able to find comfort in knowing family is there for her, whenever.

I had my latest and increased dose of Remicade 2 days ago and am elated on how well I feel. My hands work again! Mind you not completely like they are suppose to, but to be able to grasp my morning cup of joe safely is a huge one. Getting out of bed in the am isn’t as uncomfortable as it was a couple days ago and I can get to sleep with a simple plop of this grey haired head on the pillow again.

From where I blog I can see the back patio clearly, even a couple of bird feeders and the potted plants on the patio. I’ve been having a bit of an issue with our squirrel, Rocky (so named by my sweet husband). Seems he has taken note of where Jay and Kay (our blue jays, also named by hubby) hide their peanuts when Jerry passes them out in the morning. That hiding place would be deep inside my potted plants. Rocky likes to come by and dig the peanuts out, and of course being a squirrel he doesn’t clean up after himself, leaving dirt and such strewn all over the patio. When we emptied our small pond a few years back I placed the pretty grey river rocks we had on the pond bottom, on top of the potted plant dirt. This was more due to the lack of something better to do with these expensive rocks than for decoration although it does look nice. I didn’t realize at the time that it would prevent the scrub jays from hiding their peanuts in these pots, but hey, it worked so I thought I’d put more of the same rocks in all the potted patio plants (try saying that real fast). Of course the price of pretty rocks has gone up so I compromised and got the next best thing; smaller sized beige rocks. One bag at $4.59 of beige rocks covered the tops of remaining planted pots and I saved $6.50 or more by not making everything matchy patchy as I tend to like. Done. Or so I figured. The sun was shinning brightly when I walked onto our patio yesterday morning. It seemed like it would be a good day, until I saw a neat pile of rocks stacked in one of the pots, with dirt strewn all over. Again! I should have taken a picture of it, not that I could have posted it here, but it would have been fun to look back on it and imagine how cute Rocky must have looked stacking the rocks to get to that hidden peanut. Guess I should have invested in the bigger grey rocks. I bet he would have had trouble getting his little paws around those suckers!