Tuesday, March 23, 2010

Katie, my watch dog??

We have the best dog one could ever ask for. She is a white boxer, and her name is Katie. She turned 9 this past January. Like the rest of us, she doesn't come without some medical issues. She is battling Congestive Heart Failure, Arthritis in her hips, and well, she is just getting old and tired. But, she is all heart.

When we got Katie, she wasn't in the best of health. White Boxers aren't usually kept alive. I am not sure how the process goes now, but at that time, white boxers were not able to be shown, so they were tossed aside at birth..discarded some way, and breeders never told anyone that the white gene was in the pool. So when we got Katie, she wasn't in the best of shape, not like the other liter mates. But, we brought her home and figured if we didn't keep her, we would find her a good home.

Katie proved to be a great puppy. I started getting sick at this time, so she basically grew up in bed with me. I wasn't able to get down on the floor and play with her, so she got in the water bed and played with me. (yes, we had a water bed) Because she was malnourished, she grew as tired just as quickly as I did, so we napped frequently through out the day. When I woke up to use the restroom, so did she. T-A-D-A!!! Housebroke!!! This was much easier that when I put the puppy training pads INSIDE her crate, and taught her how to pee inside her crate. Anyway.. things were going great. She was still so small that I could wrap her in a blanket, and rock her like a baby, which of course she would gladly let me.

Katie didn't chew on anything but her toys. She had finally gotten enough energy to move around the house. I had read that if you purchase toys for every room in the house, and let your dog know these are THEIR toys, they will leave your toys alone. It worked! One time, my son left my book he was reading on the floor and she started licking the corner of it, and then it lead to eating just that corner. I don't believe she was being bad..just wanting the Doritos he had been eating, then licking his fingers to turn the page.

Charles decided that Katie would be kept from company early on, believing that she would then not like strangers and thus become this wonderful guard dog. Hmmm, that was the theory right? So, when we would have ANY company, we would put her in her crate until everyone would leave. Of course, she would be extremely curious and wander all over the house, sniffing every spot they were, and whine. Then we realised, Katie doesn't bark! Oh, she would bark if you would tell her to, which was followed up with a treat..even an ice cube. (she wasn't that picky) But, if she heard a noice or something, she did not bark at it. We always heard white dogs had hearing problems, even being deaf, which would have been fine, but Katie would come if called, offered a cookie, nummie, etc. She just didn't bark. Was this a good thing, or a bad thing??

A year after we got Katie, we had to move. She seemed to adapt to moving quit well. She ended up with a dogie door and a 20 foot run with a roof on it. The room that has her dogie door in it also has a fan, heater for the winter, and a small radio and TV. Her crate is kept back there w/ a large dog pillow w/ extra pillows and blankets. Is she spoiled? I don't think so. I just think she is extremely loved...and she seems to know this, and somewhat expect it at times.

The theory of the keeping her away from company, well that didn't work out so much. Katie is, well, expected to be taken care of in every area of her life, including protection. One night, her and I were home alone. I heard something fall in the room that we call "Katie's room", the one with the dogie door. She immediately turned around and at attention, stared at me. I got up, and we both headed down the hallway, but there was one huge problem. Katie was behind me! I kept telling her.."GO LOOK". She would look up at me, as if to say.."are you crazy?" and back up to be even further behind me. I would take a step, she would take a step. Finally, as I got within a few feet from "Katie's room", I bend down and tried to push her towards the room, saying "get'em". Katie sat down, looked up and me and cocked her head. It was a sad moment for all guard dog's! So, I went to peek into the room, and when I didn't see anything, I turned around to walk back out, and there she was, wagging her stubbly little tail, so proudly.

I am so happy that Katie wasn't picked to be a guard dog. Since I have been sick, she has never left my side. On nights that I am in so much pain, that I have to get up and walk the floor, she is right there with me. Every night that I am soaking in the hot bath tub waiting for the pain to become tolerable enough to go back to bed, she is right by the door,waiting on me. When I am laying on the couch with my heated blanket, and I am tossing and turning, she gets up slowly, and limps over just to lick my hand or face, just to let me know she is there, and then makes it back over to her therapeutic bed in the corner of the room. There have been a few nights when I have gotten up, and she had been too tired or sore to get up to see what what I am doing, so I have gone over and sat with her, just to let her know that I am here for her, just like she has been here for me these last 9 years, and I hope she knows as her time get shorter, I will be here for her.

I do have to give Katie credit though. She hates the mail man, and the UPS man. When they show up, it's the only time she has finally barked, and growled and tries to bite the window as they walk by. She is a well rounded old girl, that Katie of ours!

Tuesday, March 16, 2010

What The Hell????

Did I miss Something??

Did I totally misunderstand??

Am I losing my hearing??

I guess I should start at the beginning.

Sunday night was one of thee most painful nights I have ever had. By time I went to bed, I was in tears, tossing and turning. Nothing was working to ease the burning, stabbing, spasms that were consuming my body. This pain decided it wasn't going to limit itself to just my hips and lower back. NOPE. It was going to slowly, rhythmically, contract all the way up between my shoulder blades into my neck. Oh, and it wasn't stopping there. Both my legs were getting involved in this little dance of pain as well. My thighs were on fire, and my both my calves felt like they had just ran the Boston marathon...and won.

Vicodin, Aspirin, and Ativin are all I am allowed to take for this pain. Since I have trashed my kidneys with years of abusing them with overdoses of Advil, Al eve and such, I am not longer able to use any type of antiinflammatory medication. Being a Diabetic, this is one rule that I do stick to.
The Vicodin that I take has a full days worth of Tylenol in it, so I cannot take any extra for break though pain..unless I want to trade in my liver for a new one.

My Heated Mattress pad on high, 4 pillows, rearranged every hour, I think I fell alseep around 4 a.m.

Charles convinced me, that even though I had an appointment at the pain clinic the following day, to call and request an emergency appointment to explain all the pain that I was in, to get some kind of relief, any relief. The receptionist was so very sweet, didn't ask any questions, put me on hold, asked if I could be there in 2 hours. I am on my way!!!

First Question: What did you do??

Answer: Nothing! This just happens some times, and I can't get out of that cycle.

Second Question: Do you think physical therapy did this?

Answer: No, my last session was 4 days ago. I do have reactions to it, but not this long.

MY Question: What do I have?

Answer: FIBROMYALGIA!!!

MY QUESTION: WHAT THE HELL?????

So, I guess now the whole story has changed, again. Lets start at the beginning.

I went to a rheumatologist. He agreed I had fibro, but thought I had something else because my lower back was so painful to the touch and I could hardly walk. I had an MRI and x-rays. The MRI showed that I had FUSED SI joints. Sent me to have SI injections. The Dr that did the SI injection said that he felt I had Ankylosing Spondylitis, though my Rheumatologist Diagnosed me with sacroiliitis and Fibromyalgia. At my check up, I asked my "rhuemy" about the Ankylosing Spondylitis and he sais "NO" because I did not have a bamboo spine. (ok) Went back for my follow up with the doctor who did my injections, told him I didn't have Ankylosing Spondylitis because lack of bamboo spine. He got defensive stating that the bamboo spine is what we want to avoid!! It is a progressive disease and fused SI joints is the beginning of this disease. SO..fast forward to this new pain clinic. As I am getting the new injections, she tells me that my SI joints are so fused that she cannot get the needle into them to inject the steroids. I tell her that the last Dr. felt I had "AS". She said Yes, that SI fusion is the diagnostic tool, and my fatigue etc would be understandable. Now, 4 weeks later, AFTER she talks with my original "rheumy", she tells me I have fibromyalgia, not Ankylosing Spondylitis because my blood work doesn't show AS!
I ask her if Fibro fuses bone, and she tells me yes!!!!

I am so confused!! Frustrated!! I am not sure I am getting the correct information.

I am starting Savella today for Fibromyalgia, and I am supposed to wean myself down from the vicodin. If this doesn't calm down the pain when I go back to see her in 4 weeks, I will go off the savella, vicodin and go on long acting narcotic and muscle relaxer.

I don't think Doctors understand that part of our pain and anxiety comes from the not knowing. Just putting a label on something gives us a name to what we have. Something to hold on to. It takes some of that fear away, and gives us some power over it. They have gone to school years and years and know what this disease is, what is can do, what is cannot do, what it's limits are...we do not. When we are told different stories from different doctors, we start to mistrust them, and wonder what it is that we don't know. The fear comes back. The anxiety comes back..and then the pain. It is a vicious circle. Maybe they don't understand because they have not experienced it yet?? That is why you get those hateful comments like...it's "JUST" Fibro............

Sunday, March 14, 2010

One Leg Shorter???

This coming week is going to be my last week of Aqua Phyical Therapy. Sad to say, but it really did not to anything to improve my condition for fused SI joints. But, I will say my fear of water, that did ease up some. I am not ready for the Olympic Diving Team, but my heart rate did stay under 150 while I was in the water.
The warm water for 30 minutes was a nice relief compared to my little bathtub, so I do recommend it.

One thing that I did find interesting was though, is it possible for the fusing of your SI joints to cause one of your legs to shorten??

While doing water exercises, one of them was to stand with both legs shoulder width apart, then take one leg and slowly swing it forward then behind you. Well, my right SI joint it completely fused, and the left one, the new Doctor found a "small hole" to get the needle into, for the injection. So, I don't know if they consider it COMPLETELY fused or not..but I do. While doing these exercises, my left foot would drag on the bottom of the pool, but my right one would not!
Interesting. I had been told a year or so ago that one of my legs was shorter than the other, but it was like 1/8th of an inch or something. (does that mean much, an 1/8"?)

I had been diagnosed with plantar fasciitis, and was sent to a "foot doctor". He gave me a piece of a cotton lift to put in the bottom of my tennis shoe. Within 2 days, I could not walk. I literally could not put any weight on my leg, the pain was excruciating!! The pain in my hip was way beyond a 10 on that famous pain scale that I hate so much! I called him, and he said because I had "something" wrong with my hips, he suggested that I take it out until someone found out exactly what was wrong with me. It took over 3 weeks before I could walk without holding onto something. Trust me, when you are 5'2", being 1/8" taller really isn't that important. I think it has been 2 years now.

Now that my SI joints are fused, my question has been for the physical therapy team...can they be "unfused". They all agree. "NO". Now the fusion can continue up my spine, which is what needs to be stopped, but without being able to take any medicaiton for it, I don't see how this progression can be stopped.

One therapist talked about a medication call Methotrexate, and why I could not take it. Is it hard on your heart?? I know that Remicade is one that I cannot take because it is supposed to cause heart failure. I need to find a new Rheumatologist to work with me.

I just cannot believe that I am the only person that has a bad heart with AS. There has to be some type of medication out there that can stop the progression of this horrible disease!!

I have so many questions..no answers!

Thursday, March 11, 2010

March, 11, 2010

This has been a very rough week. Yesterday, I slept most of the day. I am not sure if most people understand the horrible fatigue that goes along with fibromyalgia, or Ankylosing Spondylitis, or any arthritis for that matter. Some days you feel like you can take on the world, and you try, then the next day, you are lucky if you can get yourself into the shower or dress yourself.

How many people get that phone call, to invite you to a special function? A birthday party. A special dinner. Movie even. You have been locked up inside your house for so long, going out and talking to an adult seems like you are going to Hollywood, and you are so excited. Then, the doubts and anxiety starts to set in. That glorious day hasn't even come yet, but you have already lived it in your mind.

The pain of getting ready that morning. Trying to decide what to wear, because you haven't worn anything nice in ages. Most things that touch your body bother you, so you stick to sweats, or loose fitting clothes. So, you spend a few hours trying on clothes. You are already exhausted, and starting to think of excuses not to go. Your hands are so hot and sore from buttoning the clothing, then taking them off again. Your shoulders feel like they are starting to swell from pulling sweaters over your head. You know you are going to have to put ice on them before too long. You feel out of breath. Maybe you should just take a break, besides, the event isn't for a few hours yet. OH...but if you stop and rest, you know what will happen. Everything in your body will tighten up and it will take hours before you can start to move again without all the horrible pain.

You decide to take a hot shower instead. (Years ago I purchased a shower chair so that I could sit in that hot water and let it run down my spine. It was also safer for me not to stand to long, or to hold my head back with my arms over my head.) The fatigue is becoming overwhelming, but you know your friends are counting on you, again.

Out of the shower you try to dry off and get dressed but your body is getting too cold and the pain is becoming so unbearable, and you can hardly get the buttons fastened. Holding onto the wall, you make your way into the living room, telling yourself you will take your pain medication and rest for one hour and then you will go and enjoy yourself!

This all happens in my head, right after I accept the invitation to go...., and it usually finishing up.....


Resting on the couch, the pain in your hips is so horrible, the pain medication isn't touching it. Lord, I hate when people ask me what is it on that pain scale! I rub my legs, I rock and I rock..nothing. I get up and turn on my heated mattress pad on my bed, HIGH, and I get in and wait. Wrapped in my blankets, I finally start to feel the heat, but I realize, it's already been an hour and I need to get ready to go.

As I feel the hot tears rolling down my face, again, I pick up the phone...

Hi, this is Carla....

Monday, March 8, 2010

Laugh and Cry.

My name is Carla. I wanted to start this blog so I could talk to other people that have been diagnosed with painful diseases and just want to share their stories, their blessings, hopes, and yes their anger and dissappointments. My better half, his name is Charles. He is my gift from God...whoesever God you might believe in. (don't want to turn people off right way....today is only day ONE)

This time in 2003, we were told I needed to make a Will, sign a Living Will, and a Power of Attorney because I would not be here more than 6-9 months. April 3, 2003 I had a quadruple bipass. One year later, the first stent, and one yr after that, another stent. So, needless to say, we have surprised them all, but not without some great fears, joys, tears, and some great stories. (which is why I am here.)In the meantime, I was diagnosed with some nasty things. I had diabetes before this ever started, but now,
I have a garbage dumpster full of different diagnosis. Here is just a start. Heart disease. Fibromyalgia, Diabetic Retinopathy. Macular Degeneration (Rt eye, which I had Avastin injections for) Frozen Left Shoulder, Degenerative Bone Disease, and now
I just have had my second injections into my SI joint in my hips due what they feel is Ankylosing spondylitis (AS). (both SI joints have now fused) . I am sure the list could go on and on...but this is my first post. OH...by the way. Since I have told you that I have problems with my eyes..seeing double, and wavy are the worst when it comes to Macular degeneration..please excue my spelling, or double typing. I have slight tremors as well. (we took back our first laptop telling them the keys stuck..opsss, guess not...It was me....shhhh!)

So, as the days go on, and the stories get told. I would like to include you on some of the heart aches, and the humor that you HAVE to have to just to survive these horrible diseases. (as my better half says..the alternative isn't as pretty)

Speaking of Charles, my better half. WOW, I can't say enough about him..but will always try. When you write things on your gratitude list, please always include your better half, as number 1. Charles sure didn't sign up for this, yet he has never complained. I would have never made it this far without him. To say that he is the love of my life would be an understatement! For all the events that we haven't made it to, the cancellations we have had to make, days I couldn't make it out of bed, tears I have cried, sleepless nights I have kept him up, he has never once complained. (and the sex...did you need me to tell you about the sex????) He is truly a gift from God, and I believe has kept me going all these years that my Doctors told me I would not be here. I can not thank him, nor love him enough!

Ok! (bad eyes and tears make for a bad blog...whew)Did I tell you yet that we have a 9 yr. old white boxer w/ bad hips, congestive heart failure? That's another long one...ha ha! Just that she fits in the family very well.

So, just a long introduction into my life, and if any of this fits into your life, you might be interested in keeping in touch. I plan on keeping as much information about current medical information on here as I can. I hope to get to know new people and share new stories and keep eachother positive as we possibly can.


I had started a blog, www.laughandcry.weebly.com , and wasn't sure were to go from there, so I guess you can tell I am new at all of this. I see where others also have MySpace pages and Facebook pages, so I am sure, well, I hope others can guide me as we all get to know eachother. Welcome to our life. :)