Infection/Injection

I have neglected this blog for nearly a month. I feel like a moron, but I sort of have a valid excuse.

Many arthritis drugs can become dangerous killers if mixed with an infection. In other words, you don't want to risk an injection  if you have any kind of infection invading your body. The drugs that help keep the RA under control will allow the infection to run rampant through your body, and the results can kill you - literally.

Some while back I had an infected hangnail. I've had dozens of them over the years, and they are usually a painful inconvenience that heal up in a matter of a few days. I didn't think to mention it to the procedure nurse when she gave me my methotrexate injection. But within a couple of days I had a raging infection in my hand. My rheumatologist told me later that I could have lost my finger. That got my attention!

A few months ago I had to begin taking Cimzia along with the methotrexate. In case you're wondering, I hate it. Because of it's thick consistency, it has to be administered in two separate injections, and they either go in the upper thigh or the stomach. I tried the stomach a few times and then switched to the thigh. Neither is pleasant.

Then I developed a UTI - in fact, it seems to be recurring, so we don't know what's up with that. But I finally was able to stop the antibiotics, and then I developed an abscessed tooth. Have I ever mentioned how badly I cringe at the mention of a dentist? They terrify me. Always have, always will. I've had one root canal in my long life - thank heavens - and of course that's the tooth that is infected. 

I wasn't having any tooth pain. I had been suffering from a killer headache for about a week - and thought it was possibly a result of the antibiotic I was taking for the UTI. One night while flossing I discovered a small bump on my gum. Went in to my regular dentist - who I can talk to without hyperventilating (first one that's ever happened with - and he referred me back to the endodontist that performed the root canal a couple of years ago. 

Of course, I had to pay for another x-ray, even though my other dentist sent the one over that he had just taken a few days earlier. He told me there was 'probably' a crack in the root and that I could probably wait a year or two, but it would eventually have to come out. I guess the root canal only removes the interior part of the root.

But then he saw the drugs I'm on, and decided the tooth needs to come out as soon as possible. The infection is in the bone, and I guess that's bad. 

So now I'm waiting two weeks to get into an oral surgeon to have my tooth, which I've spent thousands of dollars on in an effort to save, removed. So that will mean at least five weeks with no RA drugs. That means I may or may not be able to walk by the time my dental appointment arrives.

The antibiotics they prescribed helped, but I've been off of them for several days now, and the abscess and the headaches have returned. So I'm back on the antibiotics.

Sometimes I can't help but wonder if the drugs that help with the RA pain and destruction don't cause worse problems than I started with. It's like a no-win situation at times.

Hopefully I will get the offending tooth out and back on my regular schedule, and then I can become more active on this blog. This wasn't the post I originally planned for my "I" version, but it fell into place rather smoothly. Serendipitous? I hope not.

Hope everyone else is doing well. 

Blessings.

Harmony

Helpful Husband and Hospital Horrors

Ack! I've been neglectful of this blog, but I have excuses. My MG/YA novel is due to be released tomorrow. I've been busily trying to promote it, and fellow writers, and that takes up a huge amount of my computer time. I've also had my granddaughter in swim classes and it's hard to take her back to the sitter when she wants to come home with me. Add to that a UTI that is killing my back, and I feel justified in running late.

But now I must get to it. We're all the way up to the letter H already, and I finally came up with something for it. Some of you may be able to empathize with what I'm about to say, but hopefully most of you will not even believe some of the horror. It's all true, sadly. 

The helpful husband part isn't sad, so much, as a learning experience for me and my spouse. My husband is one of the most kind-hearted souls I've ever had the pleasure to know. He is a constant blessing, and I shudder to think what life might be like without him. He has stood by me through, hopefully, the worst, and has showered me with love and affection and more useless gifts than I could ever dream of. But there was a time in my life when I didn't fully appreciate his generosity. Hard to believe, but true.

When RA begins attacking your body, and rearranging your parts into awkward angles and makes your hands look more like fish flippers than human appendages, you begin to doubt your self-worth. Add in the pain, fatigue, new found limitations, and did I mention pain? You begin to feel, and possibly wish, that the world might have been a better place without you.

Now add a spouse into the mix that can't bear to see you hurting. He can't bear to see you struggle with simple, everyday chores like brushing your hair or dressing your child, and everything begins to multiply. He begins 'helping' you by doing many of your chores for you. I say they are your chores, simply because they are so often the little tasks that wives and mothers allot to themselves. Perhaps it's just something I learned from my mother, but running the household and caring for the children was my job, even though I had a full-time job outside the home. Sure, my husband could help by washing dishes whenever he wanted to, or  occasionally preparing a meal. But that didn't mean he could touch the laundry, or dust the furniture. Or dress my child and prepare her for daycare.

Ha! Shame on me for believing I was dispensable. My husband not only proved he could be a soldier and defend our country, he had the audacity to prove he could do it and manage all of my jobs, besides. The house didn't fall apart because I was quickly becoming an invalid. It was thriving! It really ticked me off to see how effective he was, even though the cost was heavy to him.

I couldn't get past the feeling that he was making me feel useless, even though it wasn't him. RA may attack the joints, but it also attacks your thought processes. If not, I would never have been convinced that I could cut off my own arm that night - but that's another story.

Seeing my husband handle things so smoothly should have been reassuring to me, and it was in many ways, especially when all the hospitalizations came into play a short time later. But at the time I resented his effectiveness. I needed for him to need me, and I wasn't getting that. I told you he's amazing, didn't I?

Eventually I told my doctor that my husband was being a problem - shame on me, but I did. He misunderstood my meaning and told me he would have a talk with him if he couldn't understand how sick I was at the time. I quickly set him straight, and he decided he still needed to talk with him. So we all sat down together and discussed how I needed to have the opportunity to attempt doing things on my own, with the understanding that I would ask for help when, and if, needed. It's surprising how that changed my attitude. I still needed lots of help, but I was giving him permission to help me rather than having my freedom taken from me. Maybe that's one of the reasons he calls me a control freak, I don't know, but the system worked well for us.

As our time in Europe progressed, however, so did the RA. I was missing work pretty regularly, even though my office job was pretty easy and my co-workers and bosses very understanding. I began getting ill in other ways besides just the RA. Pneumonia. Kidney infections. Bronchitis. And I was so very, very tired.

Finally I ended up in the hospital - several times, in fact. Aside from the real illnesses, I just needed time to rest, go to physical therapy sessions, and take a break from the reality called life. I hated, hated, hated, being away from my family, but I was beyond putting up a fight.

Military hospitals may have changed since my last encounter with them, and I certainly hope so. I know some may not believe the tales I could tell, but they are absolute truth. 

I was fortunate to be on a ward most of my stays. I say fortunate, because the hospital is a boring, boring place if you aren't too sick to care or notice. I met some very nice ladies during my stays, and we were able to help and encourage each other. One of my roommates was in a full body cast due to a broken neck she received coming in on an ambulance run from the field. They were taking a patient in, but there was room for a few extra riders, and the women wanted a chance to shower. The run was at night, however, and they weren't allowed to use headlights. They were driving through woods, and when the ambulance driver didn't see the tree in time, this woman had been thrown through the windshield. She recovered, but it took a long time.

Another ward mate wasn't an enlisted soldier. She was a spouse, and had just delivered a baby prematurely due to some kind of accident. The baby was okay, but the mother was paralyzed from the waist down. I laid there in my bed and listened to this stupid doctor tell her that she was never going to walk again. That she could never care for her child. That she should never even consider having another child. I wanted to get up and hit him with something heavy and sharp! When he finally shut up and left, the three of us gathered around her and told her what we thought of him and his negative ideas, and that she could do everything she needed to do for her child. I was terribly upset about his methods, whether he could have been even remotely correct, it was still wrong.

Then there is the story of New York. I never did learn the boy's real name, but that's what they called him on the night shift. The night shift was a special breed. They would come to our doorways and shine their flashlights into our faces until the light woke us up. Then when we moved away, they would shut the light off. I asked one of the nurses why they did that? She said it saved them the time and trouble of coming into the room and checking on each patient. If we moved, then they knew we were still alive. HELLO? What's wrong with that picture?

Anyway, I digress. I met New York one night while we were playing cards at the nurse's station. That was one of the perks of being ambulatory and not sick enough to be without function. While we sat there, a very, very tall young man walked down the hall toward us. He was wearing one of those halo things on his head. Everyone smiled and said hello to him and he responded in kind before moving on down the hall. 

I asked why they called him New York. Well, that should have been obvious, but I mostly just wanted to know more about him and why he had that weird contraption on his head. I had never actually seen one before. 

They told me his story. He had been hurt in some kind of accident - probably on an ambulance run, is my thought - and insisted he couldn't move his neck. The doctors had taken x-rays, but couldn't find anything wrong with his neck. But he kept insisting it hurt really badly and he couldn't move it. So they put him on light duty for a few days. They figured he was simply faking it and that he'd come around in a day or two.

So some wiseguy had decided that New York was definitely faking it, and he was going to prove it. This was after they sent him back to his unit on restricted duty. They set up a basketball game, with the idea that eventually someone would throw the ball directly at New York's head, and when he ducked out of the way, they would be able to prove he was faking the whole thing.

It didn't work out that way. When they threw the ball, it hit him - the man couldn't move quickly enough to avoid it. It knocked NY out cold. When he woke up he began screaming about how bad his neck was hurting. So the doctor asked to see the x-rays. Up until that point, they had done everything based on the radiologist's reports of no damage. Turns out the radiologist was wrong, and NY's neck had been broken from the get-go.

That's enough for today. I hope you've never had an experience like New York, or the unfortunate woman who was told she could not function as a parent. I hope the world treats you kindly, and that you have the strength and the ability to repay in kind.

Blessings.

Harmony

GOLF BALLS, GOLD, AND GOD

It’s very strange and remarkable how the human brain works. And although my brain isn’t all that remarkable in and of itself, the impact that a diagnosis had on it amazes me still today

.

For several years I had been experiencing vague symptoms that no one could figure out. Once the culprit was pinpointed, however, the disease reared its hideous head and attacked in full force. To say that it staggered me is a pitiful understatement. It was more like something picked me up and slammed me into a wall of bricks.

Our apartment in Germany was floored with some type of tile material. It had a slight give to it, but it could never be described as cushioned. I invested in several large room-sized rugs, but the long hallway separating the master bedroom to the bathroom remained mostly bare.

Within a few weeks of the tentative diagnosis of RA (several of my blood chemistry tests indicated a possibility of Lupus); I was barely able to walk without shoes. It felt like someone had slipped golf balls under the skin of my feet, where my metatarsal bones had previously resided. The pain was horrible, but I think the surprise was even worse. I would arise every morning and “ouch!” and “oof!” my way to the bathroom, bent nearly double and holding on to the wall the entire trip.

To say it was painful is a laugh. And I did laugh, but only in an effort to keep from crying. If you want a good idea of what it was like, fill your tennis shoes with marbles and run around the block a couple of times. Or have a major league player use your feet for batting practice and then try walking. Either way, you should get some idea of that which I speak. Mind numbing pain. But as bad as it was, other things were happening within my body that could draw my attention away from it.

The doctors had tried starting me out on massive doses of coated aspirin. There were a number of other drugs, too. It’s been so long ago, I can’t recall, but I know I was taking handfuls of pills several times a day. The ecotrin may have helped some, but I mostly remember constant tinnitus and bouts of blacking out upon standing.

Within a few short months I began seeing a Rheumatologist, and he immediately started me on gold shots. There were two choices at that time; solganol, or myochrysine. Solganol was a thick, viscous, dull yellow fluid that was supposed to slowly make its way through the body. Of course, it didn’t work that way with me. Doc would stab the needle into my backside, and immediately my mouth tasted like I was sucking on pennies. He couldn’t understand it. Nor could he understand it when I began having side effects that had only been reported in users of myochrysine. That was the first time I heard the phrase, “You’re not the typical patient.” It’s happened many, many times since then. I wonder if all rheumatoid patients are atypical.

I don’t know if the gold was effective in any way, because the pain and swelling continued to increase. For the first time in my life I began to be plagued with constant fear of someone assaulting me. Possibly it was side-effects from the drugs, I don’t know. But I would hobble down the sidewalk and think, “What if someone decided to mug me? What if they knocked me down? It would hurt soooo very bad. And I don’t know if I could get back up again.”

I know that’s absolutely weird! But that’s how my mind was malfunctioning at the time. Most of my joints were screaming in pain already. I was just trying to keep most of the noise inside. But my elbows didn’t want to straighten out. My fingers could barely manage the keyboard (and I desperately needed to keep my job!) Walking was becoming a feat of epic proportions. And picking up my child brought tears to my eyes.

Aside from feelings of frustration and humiliation (have you ever had to ask your husband to help you brush your teeth, or help you up from the toilet?) I was angry. I was so very angry at God for making me go through this trial. And I don’t handle anger very well, especially when it’s directed at someone who has never failed me.

So now I have added shame to my list. And more fear. I didn’t know if I was going to be able to move if things continued as they were. The doctor warned me that if we didn’t get the disease under control, I would end up in a wheelchair in a few short years. I was thinking more in terms of months, and a few times I was looking forward to it. It would cut down on the pain of walking, at least.

But I mostly feared my anger. I’m an emotionally driven person, so whatever I feel, I do it with gusto. This level of anger was something totally alien to me. And I didn’t want to be angry with God. He might decide to zap me with a lightning bolt out of heaven. That thought had merit at times. Just put me out of my misery, please!

Of course, He didn’t. He got me through the anger. Well, different drugs had a big role in that, too. But it would be years later before that happened.

I truly don’t want to stop on a negative thought. Suffice it to say that it’s been a long journey, and now I hope that it lasts for many years to come. There is so much in my life to be thankful for, and in a very strange, twisted way, RA has played an important, but unwelcome, part in all of it.

I hope your week is blessed. I hope I will be able to return for another episode next week. We’re all the way up to the letter H. I have no clue what that’s going to be about.

Harmony

FAMILY, FRIENDS, AND FINGERS

For all it's awe-inspiring scenery and unbelievably rich history, Europe is still many, many miles away from everything I had ever known. I had always been able to call or visit family pretty much whenever I wanted. Now it wasn't possible. I was suffering physically, mentally and emotionally from some unknown ailment. I felt like I needed my family near me to help me through the trauma and the turmoil. But I also had the desire to be a strong and supportive military spouse and mother.


That's the period in my life when I realized fully the network of support that the military affords its members. I was never alone with my doubt and fear. All I had to do was reach out and accept the friendship available to me from others, perhaps not in my same position, but close enough. That time also gave me the opportunity to reach outside myself and realize that I had something to offer in return.


When RA strikes, it is so easy to become completely self-absorbed. Mine hadn't yet been diagnosed, so the traveling pains, fatigue, and emotional stress were taking a toll on me. I had heard "it's all in your head" so many times that I wanted to knock a few off. (heads, that is). So with all the confusion and worry I was dealing with, the last thing I felt like doing was entertaining. But that comes with the territory of being an Army wife.


The first time the holidays came around, I was expending all my energy on choosing gifts for our daughter, delighting in the Christkindlmarkts, and preparing packages to send back home. My mother became very fond of the fancy liqueur chocolates I later sent every holiday season. The last thought in my head was to entertain a group of strangers. But my husband had a number of soldiers in his platoon that were also going to miss Christmas with their families.  These were kids, not too much younger than me, but who were single. The mess halls would put on a big, fancy feed, but it wouldn't be the same as a home-cooked meal and time with family.


So I finally got over my selfishness, took extra vitamins in an effort to increase my energy levels, and determined to make it a memorable holiday for as many as we could fit into our apartment. I baked, roasted, mashed, boiled, fried and toasted an assortment of all the favorite holiday dishes that I could think of. I even managed an edible version of my dad's incredible dressing. By the time I finished, my hands were so sore that if anything barely touched my fingers I would cry out in pain. So I repeatedly filled the sink with hot water and soaked them as often as possible. My husband wanted to help out by washing dishes, and I normally would have jumped at the opportunity to let him do them, but it was another excuse to soak my hands, so I turned down his offer.


That Christmas was the beginning of a tradition we continued with throughout the many years my husband served. We met so many people from all over the country, and made so many new friends, that it would have been horrible if I had stood in the way for any reason. We played games. People brought guitars and we sang until we were hoarse. We shared stories of family traditions. We ate until we could hold no more and then we went out to walk through the moonlit snow. I packed up every available container with goodies for people to take back to their barracks so they could share with others. We laughed. We cried. We hugged. We just had an absolutely incredibly good time. (forgive all the adjectives, but we really did.)


Of course, when I woke up the next morning, my hands resembled boxing gloves. The knuckles were swollen so badly that I couldn't straighten them all the way. And that's the first time we noticed a strange knot on one of them. At first I thought I'd gotten something in my finger. Perhaps a splinter from a bamboo skewer. Or maybe I had cut it and it had become infected. The only thing I knew for sure was that it hurt like the dickens, and I wanted it gone.


It was going to be a week or more before I could get into the clinic, so my husband took me up to a smaller clinic at one of the other bases. I'm so thankful he did. At the hospital clinics I could never get past the screening PA's. But this clinic was so tiny that they didn't even have a PA. I saw an actual doctor, and he knew exactly what was going on with my finger. He gently took my hand in his and said I had a rheumatoid nodule. I had no clue what he was talking about. He ordered a couple of blood tests and gave me the wonderful news a short time later. 


Merry Christmas to me, huh?


Hope you all have a healthy and productive week. I'll be back.


Harmony

In Memorium

Memorial Day Weekend is nearly here. I was hoping to participate in a blog hop with a group of authors from the publishing company I signed with, but I'm a stop on a blog tour for another author, and I can't be in two places at once, at  least, not on one blog. So I decided to use this blog in an unofficial and unknown salute to the men and women who have sacrificed their lives so that I may enjoy the many freedoms that are available to me. It won't get much traffic, and it won't be promoting my novel, but it will serve its purpose.

Twenty years of my husband's life was devoted to the military, and to protecting our nation. I followed along whenever I had the opportunity and the permission of Uncle Sam. There were long periods of time when I had to stay behind because of my health. The year he spent in Korea was like that. That was the longest separation we experienced as a married couple, although there were many that lasted several months. Difficult doesn't begin to describe it, especially when I couldn't even manage to tie my own shoes. 

But would I have kept him at home with me when so many others depended on him to be ready for anything and to be willing to give his all if it was required of him? No. He's not that kind of man. I can't recall the number of times he has said he would gladly go again if he were called. 

Even though he has left me when duty called, I was never left alone. The most amazing trait that the military instills in our soldiers, I believe, is the sense of brotherhood. And even though I know there are many female members of the military, they are a brotherhood. They support each other, and each other's families, as equally important and equally loved. The service members have this mindset and use it in such a way that they are assured, even if they are halfway around the world, that someone is looking out for their families.

It's important to remember every day that a soldier will lay down his/her life for us. But it's also important, at least, for me, to remember that they will do whatever it takes along the way to make the life of their fellow humans a little easier. That's one of the reasons they can go off to battle and leave their loved ones behind. They know that the others who have gone before them, and managed to return, will be looking out for their families until they return. I hope and pray that each one of them has the opportunity to return. 

Thank you from the deepest depths of my heart to every service member who has sacrificed for another.

Enchantment, Energy and Excruciating Pain

As a reader and a writer, I've always been enchanted by new worlds and interesting characters. That's what Europe was for me. I fell in love with the people, the culture, the architecture, and the food. Such amazing food.

I inherited Germanic traits from each of my parents, but it still surprised me when the natives would strike up conversations with me while waiting for a light to change, or stop and ask me for directions while I was out walking. When I opened my mouth and my southern accent destroyed their language, they would always laugh and pat my hand, as if to apologize for my blunder. It took me forever to figure out why everything I tried to say in Deutch, or I think they call it Germ now, was so hilariously entertaining. I kept wondering if I had said it wrong. It wasn't wrong, it was just - funny.

After I made a few non-American friends, they explained why people laughed at my speech. From that point on I felt comfortable laughing with them when I explained in halting German that I was an American and had no clue what they were saying to me. I had learned several phrases before traveling to Europe, but the sentence structure isn't the same as ours, and I would ask a question and then be totally lost in the translation of the answer. Fortunately for me, everyone I came into contact with was very helpful in assisting me with the language, or anything else I appeared to need help with. It was frustrating from time to time, but everyone maintained a great attitude throughout the process.

One activity that is, or was, popular in Germany is the Volksmarch. I fell in love with the whole concept, and spent many weekends with my husband and young daughter, hiking through the woods. I never tried anything other than a 10 kilometer march, though. Our child was still very young, and many of the walks were in places where a stroller would be impossible, so we ended up carrying her most of the time. My husband never complained (she was small for her age), but it soon got to the point where I couldn't help carry her, and the responsibility fell to him.

I had always been very active, and I loved walking through the woods, breathing in the fresh air, and listening to the birds. There was the added incentive of a medal for everyone who completed the march. We have a drawer full of them packed away somewhere, and our daughter has her own collection for her participation in the kindervalken. Some of them are quite ornate, shaped like lederhosen or painted in multi-colors. She's very proud of them, as we are of her.

But soon the problems set in. On one particular walk, we were about halfway through when my legs gave out. I couldn't walk, and I couldn't figure out why. One moment I was hiking up the trail, and the next moment a severe pain stabbed through my inner thigh. I couldn't make my hip move. My husband walked on a ways, and then realized I was no longer beside him. He turned, our daughter astride his shoulders, and asked me if there was a problem. I told him I couldn't move, and he laughed. "What do you mean, you can't move?"

I just stood there, my left leg behind me, and stared at him. "I mean, I can't pull my leg forward. It's stuck."

He returned and set our daughter on her feet. She promptly sat down in the pathway and began picking at acorns or something. He tried to get me to walk forward, but I absolutely could not lift my leg and swing it forward. I was truly stuck.

After a couple of moments, he lifted me and carried me over to a small boulder. I sort of half-leaned, half-sat on the rock, and waited for him to figure out what to do. I didn't hurt much as long as I didn't try to move my leg, but it definitely wasn't going to take me further. There was no way he could walk back and get the car, because we were on a woodland path and there was no way he could drive back for me. We hadn't seen anyone else for a bit, so we didn't know if we were at the end of the line or just in a lull. If anyone had come by, we couldn't explain the situation to them anyway, because everyone else was German. He couldn't carry me and our daughter out, and she probably couldn't have walked the remaining distance.

So we sat there for awhile. It wasn't bad. We talked and laughed and made little games of what we would do if we had to sit out there all night. Or maybe all week. It was a lovely day, although the air would cool once night set in.

After an hour or so, I managed to stand up and walk again. The pain was horrible with every swing forward of my left leg, but I dragged my butt out of those woods and collected my medal. We weren't even the last to finish! As we sat on the side of the trail, many others had passed us by with a smile and a wave and a "Guten Tag." We just smiled and waved back, and our daughter would call "Choos!" as they walked away, which always brought a chuckle. I don't know if I spelled that right, but it's kind of the German equivalent of "Bye," I think.

That wasn't my last Volksmarch, but it was the beginning of a new awareness of how my body was betraying me. It was a lesson for just how quickly the pain could incapacitate me, with no warning. And I still had no idea what was causing it. At the time, I thought I might be dying from some unknown disease. It was a very scary thought, and I didn't like it. Not one little bit.

I hope everyone has a safe and enjoyable Memorial Day weekend. Don't forget the men and women who have given their lives for our freedom. And appreciate that freedom by being free with your love and understanding of others. I think that's the best tribute we can give to their memory.

DISCOVERY, DELIGHT, DESTRUCTION

Do you remember the song, The Happy Wanderer by Friedrich-Wilhelm Möller? I guess it’s only fitting that it bounced through my head repeatedly during the eight or nine hour flight to Frankfort. I was on my way to join my husband in a foreign country for the first time ever. I couldn’t wait!

I’ve always loved travelling. My mother dubbed me “Captain Gada$$” at a very early age. I was always on the go, or begging to go somewhere the minute I got home from wherever we happened to be returning from. Yuck! I know that sentence is a mess, but hopefully you’ll overlook the grammar lapse for now.

My husband and I had travelled some over the years, but never outside the contiguous states, so this was a thrill. However, once I arrived at the Frankfort airport, I was convinced it was all a hoax. Sure, there were signs posted throughout the terminal in a language I couldn’t read, but that didn’t mean I was actually in another country. And once we got on the bus, the landscape was unfamiliar and much greener and more lush than that which I had left behind, but that didn’t mean anything. I remember commenting to my husband that I knew it was a joke and we were probably somewhere in the upper northeast.

Then we arrived at the post where he was stationed, and we piled into the little German model Ford my husband had already purchased. My 1967 Mustang was still on a boat and wouldn’t arrive in the country for another two weeks.  

One of my husband’s coworkers picked us up. We drove through an unfamiliar town and headed out along a highway with breathtaking scenery. As we proceeded, the elevation rose. Before long we turned off the highway and began a sharp climb up a mountain. I counted (for the first of many times) thirteen switchback turns until we reached the top. A scene right out of a storybook unfolded before us. A lovely little village spread out all around, with a twisting, narrow thoroughfare cutting through the middle. If I looked out the side window I could see sheep grazing on the steep hillsides. Window boxes filled with bright blooms decorated windows that were opened wide to the brisk mountain air and golden sunshine. I fell in love.

We lived in that little village for several months while we waited for government housing. The apartment building we found was small, just two apartments upstairs, and the other family were also American military people, so I had someone to talk with. But I didn’t have a lot of time for talking. I spent many of my days exploring the village. I would pack my daughter up in her stroller and walk up the hill to town. We had to shop daily, because our refrigerator was tiny – as were many of the conveniences we Americans take for granted. But I loved exploring the shops and getting to know the inhabitants. I found that if I at least attempted to speak to them in their language, they were more than happy to laugh at my efforts and then explain that they could speak English. I never left a shop without a small token prize for my daughter. A generous slice of delicious bologna from the meat market. A piece of ripe fruit from the grocery store. And the tiny department store – where I purchased a pillow, towels and blankets, always gave her gummi bears. She learned to say, “Danke” very quickly, which delighted the townspeople.

But all the time I was finding so much enjoyment in this new culture, my body was trying to destroy itself. One luxury I did not have was a clothes dryer. My husband managed to procure a miniature washing machine, which I had to push across the kitchen and attach to the very small sink in order to fill it with water. It wasn’t very efficient, and I usually had to wring out the clothes by hand. The forceful twisting soon became painful, and before long my hands began to swell across the lower knuckles. Then I had to hang the clothes outside from the balcony. The weather turned cold soon after we arrived, and often the clothes would freeze before they would dry.

I found that soaking my hands in hot water relieved the pain a bit, but our water heater was about the size of a backpack, so I didn’t like wasting it. Also, our landlady, although a very sweet woman, was very frugal with the coal, so our apartment stayed cold. I was grateful that I had listened to a friend when she told me to pack for colder weather. The cold didn’t seem to bother my daughter too much, but I wore numerous layers, and often gloves, just to stay comfortable in the house.

Before long the snow came, and I would sit in the living room and watch it float down in flakes the size of baseballs. The valley became a winter wonderland as the snow turned everything white and turned every unfamiliar landmark and bush into mysterious creatures. I tuned out the aches and pains while I absorbed the scenery and basked in the beauty that surrounded me.

Unfortunately, all too soon we received notification that we were up for housing. We left the mountaintop and became town dwellers. And the disease moved with us, voracious and armed for battle.

COMPLAINING, COMPANIONS, COMPASSION

Before life with Arthur, I had never been much of a complainer. I had little to complain about. Life was good, if not great. I was young, I had a great marriage, we finally had our first child, and I loved the military life. It’s not for everyone, I realize, but travel is in my blood, and meeting people and making new friends is something I've always good at.

None of that has changed over the years. I still enjoy meeting new people, and although long car trips are not something I enjoy overmuch these days, I have discovered I have a definite affinity for ocean cruises. Basking in the heat of a tropical ship deck is close enough to a sauna to melt the knots right out of my aching muscles. As long as I can find a place out of the sun, I’m good.

I must digress for a moment here, and take us back to the days immediately preceding our trip to Europe. Since I was staying with my parents temporarily, I decided to take on a part-time job to help occupy the days until I could join my husband. I had never worked much in fast-food, always preferring office work to standing on my feet all day ensconced in the smell of hot grease. But I thought it might be a fun change of scene, and there weren’t many employers willing to take on office workers for such a short time.

So I applied for a job at the local Wendy’s. I liked working with the young kids that often fill those positions, and the manager was a family acquaintance who knew my time there would be short. I went off to work in my blue striped apron, knowing my parents would love the time alone with their granddaughter.

What a nightmare! At that time, Wendy’s had only recently introduced their first chicken sandwich to the menu. One of my assigned tasks was to prepare the chicken breasts for deep-frying. I had to place the breasts in a shallow pan of flour and break down the membranous fibers so that they didn’t curl up when fried.

The only way we were allowed to break down the chicken was with our knuckles. I had to press the backs of my hands into the chicken meat hard enough to break it down, but not too hard. A utensil would have mashed it up too much. Knuckles were best.

It wasn’t long before my hands because extremely sore and tender, and they swelled slightly. My co-workers and companions didn’t understand it. Several of them were also assigned to the same task, and had no such problems. They made me feel like a total wuss.

My mother was compassionate about it, but didn’t understand the extent of the pain I was experiencing. For that matter, neither did I. My hands got so sore and stiff that I couldn’t pin diapers on my daughter. She has very sensitive skin, and wouldn’t tolerate disposables, so I had always used cloth diapers on her. But suddenly the pressure of squeezing the large safety pins caused extreme pain in my knuckles. I thought it was all just a reaction to the chicken breast pounding, so I gave up the job.

Now I had more free time than I knew what to do with. I began looking up old friends and spending time with them. But it wasn’t long before they started acting strangely. It took me a while to figure it out, but I finally realized that it was the constant complaining I had begun.

I honestly didn’t mean to complain. And it’s not like I went on and on about how bad I felt all the time. But I’ll give you an example of what my life was like at that time, and see how you would describe it.

My friend and I arrange for her to pick me up to go shopping. She arrives at my parent’s house, and I limp out to the car. (I’m limping on my right leg.) My friend greets me with a frown and asks what’s wrong with my leg. “Oh, I don’t know,” I say as I arrange myself in the car. “It just hurts sometimes.”

We get to the mall, and after a while we’ve got a selection of items to try on. We come out of the dressing rooms, and I’m rubbing my left shoulder. “Did you hurt your arm?” asks my friend.

“Um, no,” I reply. “It just hurts all of a sudden.”

My friend eyes me a bit doubtfully. “How’s your leg?”

“Oh, it’s fine.”

We head down to the food court, but half-way through lunch, I stop eating. “Is there something wrong with your salad,” asks my friend.

“No, my jaws just ache,” I respond. I pick up my tray with my left hand and stretch my arm out toward the trash bin, which I force open and dump the remains of my lunch.

“Doesn’t that hurt your arm,” asks friend with raised eyebrows.

I toss the tray onto the top of the trash bin. “Nope. My arm’s fine now.”

See where I’m going with this? By now my friend is beginning to think there’s definitely something wrong with me, but she’s sure the problem is somewhere in my head, not in my leg or my arm or my jaw. I know this to be true because she later admitted it. She’s not the only one.

But that’s how it started out for me. The pain in my joints would travel throughout my body, stabbing me here, pinching me there, until I doubted my own sanity. I definitely felt pain, but aspirin didn’t make it go away, and I had never taken anything stronger. So I started believing that I had developed hypochondria. The word ‘arthritis’ never entered the picture. Not once.

That was my life. Still young, still wearing those four-inch spike heels, a fairly new mother going off to a strange country, and having mental issues. But I wasn’t going to let it get the best of me. I pushed the pain to the back of my mind as much as possible, and kept doing what I had been all along. I took care of my family. Probably not as well as I had been in the past, but hopefully well enough that they didn’t notice what it was costing me.

Hope you all have a blessed week. I’m going outside to lie in my hammock and smell the honeysuckle.

Harmony

Saying Good-bye for Now

I know I should have posted letter C today, but my mother-in-law passed away yesterday morning, and I've been busy with too many important tasks to take the time to think about a blog post. My children needed hugs, my husband needed lots of support since he is the oldest, and nearest relative to take care of final arrangements. And I have to assist him with this. 

It wasn't unexpected, but we're never prepared for death. That's why we need to take every opportunity to make the best use of our time while we're still among the living. We need to fill our hours with the people who are important to us, and people that we may not even know, but that we are important to. Little kindnesses and random acts of caring are so important. 

My mother-in-law wasn't the gentlest or most thoughtful of people, and she tended to be self-centered, especially as she grew older and began having health issues. Pain has a tendency to bring out the worst in most people. Occasionally my husband would get short-tempered with her, especially after the fifteenth phone call at two in the morning, when she thought she was holding the television remote, rather than the telephone, and simply couldn't figure out why the channel wasn't changing. Or when she would tell him for the umpteenth time that she couldn't figure out why she had that lump on her finger, or asked him repeatedly why he supposed it hurt her so much to bend her knees.

RA hasn't made me a nicer person, probably, but it has helped me to be just a bit more patient with others. It's enabled me to understand that someone may look healthy and happy, but may be hiding a wealth of pain. And because I have tried many times to downplay my own pain, and hide the ravages that the disease has heaped upon me, I have learned to realize that everyone has something they are hiding. Since I love a good mystery, that fact has helped me take a bigger interest in others. I have found that when a person discovers you are truly interested in them, they become much more open to sharing, unless, of course, they have something to hide. 

That's all the thoughts I have for today. It's a rather pathetic effort, but I am saving my energy for the next few days. There is much to do, and saying my final good-byes to a love one must take precedence. If you are still blessed with loved ones, take the time to touch one another and share some conversation. If you are alone, call or write a friend, or better yet, meet some new ones. We can find friends in the most unlikeliest of places, if we're open to it. I spend time volunteering at the elementary school when I can. Who knew that at my age, some of my best friends would be kindergarten students? They have taught me so much!

Good night, and I hope it really is good. 

Harmony

BABIES, BAD KNEES, AND BICYCLES

By the time our daughter was two years old, we had moved to Alabama. We found an upstairs apartment in a nice complex inhabited by a number of other military families. The apartments were in a secluded area, rather off the beaten path and surrounded by woodland. A great place for long walks in the afternoon.

Shortly after moving to the area, we became acquainted with a family at the other end of our block of apartments. The father and mother were both enlisted, and soon I had agreed to care for their 18 month old twins. I had thought about going back to work, but didn’t really want to because our daughter was still so young, so this was a great arrangement.

All my life, I had been very active. From the time I could walk, I had traveled my childhood neighborhood in the company of my brother and other older children living nearby. It worked out that most of the kids living in closest proximity to us were males, so I had learned early on to rough-house, climb trees, skateboard, run on stilts, and ride my bicycle for hours on end. That’s what kids did in those days. Summers were spent at the swimming pool. Winters were spent sledding and building snow forts or ice skating. We didn’t sit around.

Plus, when I finally found other girls to spend time with, I danced, participated in gymnastics, played tennis, rode horses and chased boys. You have to be in pretty good physical shape to successfully chase boys.

So because of the relatively healthy lifestyle I had lived – I never tasted a fast-food hamburger until I was sixteen – I couldn’t understand the constant aching and pain in my legs. The hip pain had now progressed to my knees. And I was tired all the time. I was chasing three toddlers around all day, and trying to keep up with a very active twelve-year-old, and the regular everyday chores that women do, but I wasn’t doing anything that would explain the intensity of the pain I was experiencing.

I got to the point where I couldn’t find the strength to pick the twins up – the girl was average size, but the little boy was a hefty one – so I began laying them on a towel on the floor to change their diapers. But suddenly I could barely lift myself up from the kneeling position on the floor. I realized the seriousness of the situation one day when the babies all started pushing on my behind and grunting as they tried to lift ‘mamaw’ off the floor. We fell in a heap of giggles and tears while I tickled them mercilessly. The giggles were because the whole thing was laughable, but the tears were because I was scared, and in pain, and I didn’t know if I’d manage to get up or not.

So, back to the doctor I went. I have a deep respect for our military, but some of their practices are ridiculous. Or they were, back in the day.

The protocol at that time was for the patient to make an appointment.  The appointment afforded you a visit with a PA. The PA would screen you and decide if you actually needed to be seen by a physician. If you had cold symptoms, for instance, they would just issue you a ‘cold pack’ and send you to the pharmacy. Too bad if you were afflicted with strep or bronchitis. You’d have to come back when your symptoms worsened and hope to be lucky enough to get through next time. It was maddening, and especially so for me, because I had no fever, no obvious signs of disease, just continued complaints of vague, traveling aches and pains. So it took weeks to actually get to see a physician.

Of course, I could have saved myself the trouble. This time I got a wisecracking expert who again x-rayed my hips and knees, and came to the brilliant conclusion that I was lazy, and needed more exercise. His prescription was for me to start riding a bicycle every day, and to come back in a month.

So what did I do? I dragged my bicycle out of the shed, plopped daughter into her infant carrier behind my seat, and rode my blasted bicycle. I rode it every day. I rode it for miles. I rode it until I literally had to drag myself up the steps to our apartment using the handrail. I rode until I had to sit at the top of the stairs and lower myself, step by step, to the bottom. My knees swelled and didn’t want to bend when I said bend, or straighten when I said straighten.

I quit babysitting. I quit riding my bicycle. I quit going out. I quit doing many of the things I loved. It took every ounce of my draining energy to care for my child. I cried. Lots and lots of crying. My husband was going nuts because he didn’t know how to ‘fix’ things. He’s always been a fixer. He insisted I go back to the doctor, but I refused. It wouldn’t do any good. At that time, I was beginning to think that all Army doctors were a bunch of idiots.

Then my husband received orders for Germany, and I went home for a couple of months until he could arrange for us to join him. Lower humidity. Closer family support system. Life got better. For a little while, at least.

ACHES, ANXIETY AND A-HOLES

I don’t make a habit of resorting to vulgarities, but occasionally I succumb to the low-mindedness that allows a few to escape my fingertips. My apologies if I offend anyone’s sensitivities. But there is a very good likelihood that at some point in your journey with RA, you will find yourself at the mercy of a doctor who is uninformed, ignorant, or just plain rude. It’s not entirely their fault. We put far too much trust into the hands of physicians, who, by their own admission, are practicing the art of medicine. It usually takes years, an acute mind, or a combination of both to acquire the skills or intuitiveness to recognize RA in its early stages.

Lately I’ve noticed that many of my writer friends who blog are participating in a game in which they follow the alphabet with their blog posts. I liked the idea, so decided I would try it with this journal, although I won’t guarantee I continue all the way through the twenty-six letters. I’ll go until I get stuck, and then, unless someone steps in and rescues me, I’ll drop it. Perhaps readers will share their own thoughts in the same manner, which could be a lot of fun for all of us.  And if there is anything we need in our lives, it’s more fun, or more reasons to laugh.

I don’t have a clue as to when the seed for this disease was first planted within my depths. I was in my mid twenties when I realized something weird was happening with my body. We were stationed in Kentucky. (My husband was in the Army.)

Kentucky is hot in the summer, and extremely humid. I began waking up in the night – every night, it seemed – with severe leg aches. I sleep on my side, and my hips began hurting so badly that I would toss and turn all night long. At first I attributed it to the cold from the air-conditioning. I hadn’t grown up with refrigerated air, so I thought it was a matter of not being used to it. So I turned it off and opened the windows. That only increased the discomfort and pain in my legs. The best explanation I could come up with for the feeling was like a toothache in my legs, which usually resulted in strange looks from family members or close friends who couldn’t imagine the feeling I was trying to convey.

My parents came to visit that summer. My husband was away on military business, and my daughter was very young, so they came out to help me with her since they knew I was experiencing some minor problems. I hadn’t given my latest sleeping attire much thought until the first night they were at the house. My mother came into my room to show me something, and she burst out laughing for no apparent reason. I waited patiently for her to explain the joke that I had somehow missed, thinking my dad had done something silly. But after a moment she pointed at me and asked, “What in the world are you wearing?”

The smile left my face as I glanced down at my pajama ensemble; a strappy red tank top and my husband’s Army issue woolen long johns. Just a few nights earlier, in an act of desperation, I had donned my husband’s winter underwear in an effort to relieve the nightly leg aches. And, it had helped, even though I had to crank up the air-conditioning and place a fan near my head to avoid the sauna effect.

My mom listened politely and with much sympathy to my complaints and efforts to alleviate them, and then asked me why I hadn’t gone to a doctor. This is where the first of the A-holes comes in. I explained that I had gone to the doctor, several times, and he had finally determined that it was all in my head. I had the typical Army Wife Syndrome. He explained that there was nothing wrong with me. After all, he had x-rayed my hips and no structural damage was evident. So he deduced that my problem was caused by the fact that my spouse was spending lots of time down range or out on maneuver, and I had nothing better to do with my time than dream up symptoms and run to the doctor’s office every chance I had. Puh-leeeeease.

Of course, at the time I was still fairly young, so even though I knew how painful my legs became each night, part of me believed him. That served to raise my anxiety levels ten-fold. Not only was I suffering from lack of restful sleep, increasing pain that was beginning to interfere with my daily routine, I had also become a hypochondriac. My world was beginning to suck, but it was going to get much worse.

So, that’s it for A. How about you? Do you have a word or a phrase that describes a part of your journey? I’d love to hear it. Or perhaps you have a question. I possess very little scientific knowledge, but there’s always the chance someone else will know it if I can’t find it.

Thanks for dropping by. I’ll try to come up with something a bit more interesting for B, but right now I’m empty. Have a blessed night. Sleep tight. And if you have to wrap yourself in wool, know that someone out here understands.

  

Welcome to my life

I have created this blog all on my own. The excitement I feel in saying that is almost overwhelming, for there are not many things I can say that about. It seems I am becoming more and more dependent on others to manage the most trivial of pursuits. But there was a time when I accomplished nearly nothing without the help of others, so I have come to treasure every small victory.


The purpose of this blog is to serve as a therapeutic outlet. Throughout the many years I have lived with Rheumatoid Arthritis, I have never once written about it. I have talked about it, read information about it, listened to advice about it, railed against it, been totally pissed off about it, suffered depression because of it, been in unimaginable pain because of it, fought against it, pleaded with God to remove it, ignored it, coddled it, and, well, I could probably fill pages with other descriptions and varying actions concerning it, but as I said, I've never put pen to paper, so to speak, and written any words about it.


I don't know if anyone else will share this exercise with me, or if I will do it alone. I welcome one and all, whether you want to learn a bit about the disease, or just out of curiosity, or if you would like to share your own thoughts about it. Please use this blog in any way you wish, as long as it's legal. Perhaps we can learn from one another in that way. My purpose is not to inform or share any medical advice, because I have no expertise in that area. My expertise lies in the fact that I have lived with  the disease for more than half my life. 


Rheumatoid can be deadly, it can be mild. It can go into remission. It can bring you to your knees. Of course, once you're down there, you may have to stay until someone comes along who can raise you back up, especially if you're on a ski slope. Oh, memories!


What I most want to accomplish by this blog is to remind myself, and hopefully others, that there is a humorous side to RA. It certainly isn't always evident, and sometimes it disappears completely. But every so often, when I least expect it, it will crop up, and I am overcome with the need to laugh. And, as they say, whoever 'they' are, laughter is the best medicine. Maybe if we laugh together, we can banish the pain to a place where it will hide and cringe like the coward it is.


That's it for today. It's a start. A beginning. I hope to add a little something every week, but I'm not going to guarantee it. One important lesson that RA has taught me is to be flexible with my time. It's the only thing left to me that even remotely has a chance of being flexible, so it's all good.


Harmony