Monthly Archives: January 2007

Another blah day! Will they ever go away?

I slept most of the day away yesterday. I can do that on some days when my husband is home to take care of our daughter. The two things I got done yesterday were a few posts on the BLOG, and the small amount of research I had done on the Internet.

Today I went through some pictures. That was probably a bad idea! I look terrible now! My hair is awful and thin. My face isn’t clear like it once was. I got this rash across my cheekbones and nose half the time now! I look ill!

I am very tired today and stiff. The shortness of breath has returned today. I am aching too in my hands and wrist. Everyday I think if I just have some coffee I will be so much better. I tell myself I will have energy when I finish the cup! I don’t know why after all this time I try to tell myself that still. It doesn’t help so much with those things. I wish it would. I do love my coffee though!

I went through my normal routine again today. I woke up to pick off strands of hair from the pillowcase and then I spent time taking off the loose hairs from my shirt top. I got my daughter her breakfast then off to the couch I went to lie down again. I dozed off for about an hour! I woke up and really didn’t want to get up but knew I had to. I feel like I am dragging a ton of bricks behind me!

Life is just being sucked out of me slowly here! That is so damn depressing too.

Afternoon already! Time flies when you sleep a lot of it away! Have to go make some lunch…

The doctor suggests Fibromyalgia! I don’t think so.

My doctor suggests that I may have fibromyalgia. She even gave me some information about the condition that she printed out. I read it and of course done more searching on the Internet to find out if it could be that.

What are wrong with these doctors? Do they not listen to you when you explain to them the symptoms you are having? Apparently not!

I read a lot of stuff on that fibromyalgia and it doesn’t fit with so many of my symptoms it made me infuriated that she even suggested it! The symptoms of fibromyalgia are these:

1. Widespread pain
2. Fatigue and sleep disturbances
3. Irritable bowel syndrome
4. Headache and facial pain
5. Heightened sensitivity

Those were major symptoms. The mayo clinic also lists other common signs and symptoms and they are these:

1. Depression
2. Numbness or tingling in the hands and feet
3. Difficulty concentrating
4. Mood changes
5. Chest pain
6. Irritable bladder
7. Dry eyes, skin and mouth
8. Painful menstrual periods
9. Dizziness
10. Anxiety

Now the first five symptoms, which are major symptoms, do not fit. I have no widespread pain. My pain is in my hands and fingers. (Joint pain) I have some pain in my feet at the toes. I am 20 weeks pregnant so my hip pain I believe is from the pregnancy. I have headaches but no facial pain. I have no tingling in my hands or feet. My bladder is fine. I have dry eyes and skin but not mouth dryness. My dry eyes are from allergies. Another doctor, my eye doctor, has already determined that. The skin could be from winter but that will get looked into further when I see the dermatologist.

Now trying to convince me I have fibromyalgia when my other symptoms are not given an answer to will be a waste of my time and my money!

It would not explain my bouts of anemia throughout my life. It doesn’t explain the sores I get in my mouth and nose. It doesn’t explain the overall feeling of being ill. It doesn’t explain the rash I have on my cheeks and nose. It doesn’t explain my hair loss! It doesn’t explain my freak false positive hepatitis B test! It doesn’t explain the sharp pains I get in my chest from time to time when I take a deep breathe. It doesn’t explain why the sun seems to make some of my symptoms worse either! Fibromyalgia? I really DO NOT think so!

I have not had my heart or lungs looked at and I can’t have that done until after I have my baby. Those are things have to wait.

I have thought maybe I should just give up in trying to have this figured out. It is very tiresome dealing with doctors who don’t seem to take you seriously. It really is disturbing too that I have to be the one to research all these things to try to pin point what is causing these symptoms! It pisses me off actually. Why do we have specialists and doctors if they are not going to research your symptoms to inform you of what could be wrong?

I feel ill and I need to rest…

A dermatologist is next I guess…

I have called to get a referral for a dermatologist now. The rheumatologist wants me to have them rule out psoriasis of the scalp (for the hair loss of course). The rheumatologist tried to say the rash on my face was roseate and wants to have a dermatologist have a look at that too. I will go see a dermatologist and probably be told that it isn’t psoriasis or roseate. I honestly feel these symptoms are linked to something more.

I really have my doubts about this rheumatoid doctor. I wonder if he knows what the hell he is talking about. I know I don’t have rheumatoid arthritis but he didn’t even seem interested in finding out what my symptoms are from. It still burns my ass thinking about that visit and how he treated me. I am so sick and tired of doctors making me feel like I am crazy or that there is nothing wrong every time I go to them with my symptoms. I knew something was wrong with the tumor in my back and yet the many doctors I had seen thought nothing was going on. Now again I KNOW something is terribly wrong and they are writing me off again I feel.

I have been going out in the cold without my gloves now to see if my hands are turning colors. Before I always kept my gloves on because the cold makes my hands hurt like hell. I mean why would I want to expose them to the cold directly right? Well, I was asked to keep a check to see if they turn colors because that could be Reynolds syndrome and that is a common thing in people who do have Lupus. Today I noticed my finger tips turn red. The rest of my hand turns pretty pale. I am not certain that will help them at all but it is what has happened the past few days. I will continue to monitor my hands to see if any other changes happen.

I have to wait until March to see the dermatologist so those answers I have to wait for. I will continue to document my situation so that I have a good record of things that come and go as far as my health. I hope in the end I get an answer to what is wrong with me.

If it isn’t Lupus, what is it?

I am so frustrated! Have you ever gone to a doctor with symptoms and they act like it is no big deal to find out what the problem is? Well I have that happening now and it had happened before hand with another problem I had.

The first instance was with my leg and back pain. I was having shooting nerve pain down my right leg and my back was hurting very badly. I lived in Wisconsin at the time. I go see a doctor and tell him something is wrong and want to know what it is. I explain to him my symptoms. Those symptoms were these:

1. Back pain
2. Shooting, stabbing pain down the right leg
3. Major fatigue
4. Loss of appetite
5. Hair loss
6. And a general feeling of being ill
7. Joint pain in my hands, wrists and feet

At first he wanted to suggest it was depression or stress. That didn’t go over well with me and told him, “Look something is wrong and this isn’t just depression!” So the doctor orders an X-ray. That X-ray showed nothing abnormal. He ordered no other tests to be done and was confident what the problem was.

He said the pain in the leg was stemming from having shingles at an earlier age. HE WAS TOTALLY WRONG but it took years after the fact for me to find out it was something much more serious, and that it would have only taken an MRI to be definite of the problem.

So years had passed and I just dealt with these symptoms. As the years passed the symptoms got much worse. It came down to where I couldn’t walk at all and it was at this time I found a doctor who cared enough to find out what the problem was. She ordered blood tests and said she wanted to do an MRI to find out if anything was there.

Sure enough the MRI had shown there was a tumor attached to a nerve next to my spine. She then referred me to a surgeon. Unfortunately he could not remove the tumor so he referred me to a neurologist who treats me for the pain of the tumor.

Now that I have seen a neurologist for the tumor for a year I have been told by him that the other symptoms I have will not be caused from the tumor in my back. Some symptoms are new. Those symptoms are these:

1. Hair loss
2. Fatigue
3. General feeling of being ill
4. Aches in my muscles (newer symptom)
5. Joint pain in my hands, wrist and feet
6. Sores in my nose and mouth at times (newer symptom)
7. Loss of appetite
8. Battles of anemia over the years

So I decide to see another doctor to get an idea of what could be wrong. She referred me to a rheumatologist. I begin to think I finally will know what is wrong with me. Boy was I wrong.

I go to see this doctor and explain to him my symptoms that MOST concern me. I fill out a symptom sheet to include all my symptoms though. The ones that most concern me that I explained to him were:

1. Hair loss
2. Feeling ill in general
3. Mouth and nose sores
4. Hand pain

I know that it is not rheumatoid arthritis. They checked me for the factor and came back negative. That is great news.

While visiting this doctor he tells me that it is not rheumatoid arthritis period. He repeats this like five times. I get frustrated because I already know that first of all and second I want to know WHAT IT IS that is causing these symptoms.

I tell him my aunt has systemic lupus and it concerns me some that I might have it. He says that I do not have lupus period. He said my anti nuclear antibody test was negative. OK I thought then what is going on? He had no answers and he didn’t seem concerned with even hearing my complaints of symptoms. He didn’t seem as if he was even listening to me. He didn’t order any blood tests, which I found very strange. I would think he would have wanted blood tests to see what else could be wrong.

My hair loss he tried to blame on dandruff. I then told him about visiting a doctor for my scalp after my back surgery and they said it was not causing hair loss and I have no signs of psoriasis. So that dropped my confidence in him more. It was as if he was trying to simply write me off so that he could just move on to his next patient.

So I leave very upset and I break down to cry in the car ride home. I was so frustrated that I had no answers still and that the doctor didn’t to even care that something is wrong with me. I am thankful it isn’t RA and I am thankful if it really isn’t Lupus. I am upset that I don’t know what it is still today and he shown no interest to even want to find out. You have any idea how it feels to know something is wrong but the doctors just don’t seem to care? You have any idea how it is to feel the way I do and never knowing what it is caused from? It would make you break down and cry too.

I get home and decide to do my own research as I have been doing for years when it concerns my health. It is sad when you have to try to diagnose yourself. While searching for my symptoms I found a medical site that allows you to put in every symptom you have. Once you do that it lists diseases that have more than one of the symptoms you listed. It also lists other diseases that have at least ONE of the symptoms you listed.

Now as I put my symptoms the list got shorter for the diseases that match my symptoms. When I finished it, it had only listed one disease that it could be matching all my symptoms. That disease was Lupus.

I have read about Lupus and I know it is one of the toughest diseases to diagnose. I even read it can take years to truly know without a doubt that is what it is. So now I am left with no definite answer as to what is wrong with me. My anti nuclear antibody test was negative so that leaves the doctor saying no to Lupus. Could I still possibly have Lupus even if that test is not positive at this time? I have no idea. I would have asked the guy that if he would have shown better interest in my situation. It took my aunt years to find out that she had Lupus. She had told me her doctor thought she had Lupus before her anti nuclear antibody test came back positive.

The rheumatologist I was referred to suggested that I see him again in July. Why should I waste my money and time?

I will continue to live my life the way it is. My hair will continue to clog the drain in the tub and eventually maybe I’ll be bald. I can barely open jars now. It is harder for me to open soda cans, to lift things, to type and to write at times. My hands will continue to get worse and eventually I won’t be able to use them at all. I mean this is just what I imagine my future holds. I will continue to sleep like I was a hibernating bear. The other symptoms will probably get worse as they have over the last few years and I just have to settle for that I guess. I mean thanks to the useless medical system and doctors we seem to have.

If it isn’t Lupus I want to know what it is. I want a doctor to investigate to find out. That IS THEIR JOB! That is a dream though. I can say that through experience. Good doctors are FEW and FAR BETWEEN!

I just want to know what is wrong with me! I just want to feel better! Oh doctor, oh doctor where could you be? I need a doctor that can tell what is wrong with me!

(Everything I’ve read points to Lupus)

A friend commits suicide

joeworthington.jpgHis name was Joe Worthington. I get news from my hometown that he had hung himself. Twenty-eight years old and he had three children. I only knew of the oldest two. The newest was just a baby I guess. It is so terrible for the children to have Christmas tainted in this way for them for the rest of their lives.

We went to school together and were really good friends. I remember when I first met him I thought he was so adorable. His dark wavy hair and his personality were just great. We got along fabulously. We were in some mischief together but that is a normal thing in high school isn’t it?

He had hung himself on Christmas Eve and they found him on Christmas day I heard. When my aunt had told me I was completely shocked. I had not talked with Joey for a couple years but last time I visited home I had seen him. I knew he battled some personal issues but he was still that funny Joey I knew from high school.

His sense of humor was great. What a cracker jack he was. I didn’t get to go to the funeral. If I had been back home I surely would have gone.

A big part of me was so pissed to have heard he had killed himself. What a selfish prick I thought! Then the sadness overwhelmed me. It is so sad that he thought there were no other outs available to him. We were the same age and a part of me could relate so well with him being in that mindset. The mindset where you see things just aren’t good anymore and you are so tired of life in general. Yeah, I’ve been there myself.

Him committing suicide has affected me more than I thought that it would have. Joey will be one person that I’ll miss a great deal. His face will be one that will be absent from that future school reunion that I will attend and he will not be forgotten. What a sad, sad outcome for so many…

In loving memory of you Joey!
1978-2006