Angry days

Standard

Hello everyone! I hope you are all pain free and doing good.

The title of this post says it all about the last few days. I am still sick with the flu. Fevers, chills, dry cough, runny nose, headaches and blah. Please do be extra vigilant to keep from getting this flu!! It is a misery and since those of us with autoimmune diseases are usually on immunosuppressants of some sort, hyper vigilance is called for. I thought I was being vigilant yet here I sit, three weeks into it and no relief in sight.

So I have been a bit grumpy, to say the least. I have several reasons. First, I am sick. No explanation needed there. Second, I have been sick for three weeks now. That will make you grumpy too. Third, after waiting over a week to see the PA at my GP’s office, I was not looked at for the flu, but instead they went by what I made the appointment for ONLY. That was acid reflux. Yep, I sat at the doctors and was told I would only be seen for what I had made the appt. for, nothing more. If I needed to be seen for the flu, I needed to make another appt. Same thing for my foot. Ok, the foot I can understand but the flu??? Oh, and since two immediate family members recently had cancer in the uterus and ovaries, I actually asked for an order to get ct scan done just to be safe. I mean, she was writing an order for a chest X-ray so why not? I told her why I wanted it. I was told that would be a entirely new appt and she would not write those orders for me! So, if I needed all these things looked into, then three more appts. would be needed. Seriously!!!

Now having worked in the medical field (nursing), I was flabbergasted!! I understand not addressing my foot issue, but to tell me no orders would be written for tests that I could get done at the same trip to the hospital was absolutely beyond my comprehension. Click, click print and done. Nope. When I said how much easier it would be to do them all at the same trip I was told ” people have to get them done at different times all the time”. Not exactly those words but actually ruder.

So, I have been toying with the idea of changing my doctor (gp) for a bit lately and today tipped the scale. I waited to see them even though I was sick, and have lupus, and yet I could not be treated for anything other than acid reflux!!!!

See ya family practice I have gone to for some thirty years!!! I will find one that actually treats their patients with compassion and caring!!! I have had enough!!!

First, I am on a VERY fixed income. Second, the hospital is in Dayton Ohio so I ration my gas and would like to make it all in one day. Third, I am a human being that typically will NOT go to the doctor UNLESS I am quite ill. You could even say slightly non compliant. If I make an appt. it is not a little thing to me. If I could afford all those visits in the first place, I would not wait until I have to be seen.

So, I got a handout about gerd, an order for a chest X-ray, and $83.00 poorer for wasting my time. This has upset me so much I came home and cried.

Now on to find a new doctor. My daughter told me of the one they see and I am thinking next month I can set up an appointment and see how it goes. I cannot afford another doctor appt this month. Sucks to be me right now but I will survive!

In the meantime, I can always go to the ER where they treat me with more respect and dignity then my family doctors “professionals”.

Still Alive

Standard

Well I am still alive and kicking here in Ohio. I must say though, this flu sucks. I have gone from vomiting and diarrhea onto fevers, chills, aches and coughing with sinus pressure. Yeah, it sucks to be me right now.

No matter that though. I want to ask that all my readers do me a favor please. Actually two. First, please pray for my friend Brian and his wife. They live in Tennessee. Their new baby developed an issue and while at the hospital, it was discovered there is a heart issue. The baby was airlifted to children’s hospital in cincinnati and is scheduled to have surgery. This sweet couple need all the help and prayers they can get! On Facebook, you can read their story at the page, “Lucas Strong”. Please keep this family in your prayers!

Second, I have another friend whose grandson has a rare form of cancer. He had a none marrow transplant and has declined steadily ever since. He is soon now to have no more pain but his family, including my friend who is his grandmother, are experiencing emotionally devastating pain as they let him go. Ironically both children are at cincinnati children’s hospital.

So I ask for prayers for these two families who are dealing with so many different issues right now. You don’t need their names, since I know God knows who they are. I thank you.

As I write this I am watching the snow plow clearing our road. We got seven inches of snow a few days ago and have received around three inches so far tonight. I think our mild winter last year is resulting in the snow of this year.

I will be seeing two doctors in the next week and a half. Hopefully I can get this flu over with and move forward again. I just have not been well and that’s why I have not been on here.

Stay safe and warm out there!! ~Jen

Medical Terminology 101

Standard

This is a repeat of this post. I thought it maight be worthy of reading again.

Lingo or Medspeak

As someone who comes from a medical professional background (nursing), I had to learn how to medspeak, or the language of medicine with its roots of latin and long unpronounceable words in nursing school. Since my diagnosis, I have found this knowledge to be an asset to understanding what is going on and the variances of the disease. I have also found that many others have been forced to learn the lingo or medspeak upon their diagnosis as well.

When you are diagnosed with a chronic, incurable disease, the first thing many do is look it up online. This can be good or bad. There may be a lot of information out there, some good and some bad, some not important, some important. Some of the information will scare you to death if you read it. For example, when I was first diagnosed with lupus, one of the first things I read was that the life expectancy was ten years. I should point out that I passed the ten year mark about 9 years ago. Unfortunately, that information is still out there and some may stumble upon it and freak out.

With medical diagnoses and prognosis changing every day, it is no surprise that many people are confused by what they find. I think I would recommend if you are researching your diagnosis, start with the national organization in your country. Most times, they have the most current, accurate information available. Once you have waded through the goldmine of information you find there, give it time to digest and process in your mind.

Another great source is to join a support group in your area. You can find out if there are any by once again checking your national organization’s website or calling your local hospitals and asking. Many times, your doctor may even know of any support groups as well.

One of the best ways to investigate the medical lingo is to take it word for word. When you happen on a word you do not understand, stop and look that one word up individually and then try to make sense of it as a whole. Put it in perspective with the sentence. If there is a sticking point, write it down and ask your doctor. Better safe than sorry.

On the whole, always remember that unless it is from an “official” website, it may not be as accurate as it could be. Caution is to be exercised above all and always consult your physician as well.

Personally

Standard

Well, I guess it is time for me to add a personal post. Times are getting better, then worse. Each day has been a challenge in one way or another lately. I have not disclosed the reasons why to date but feel I need to do so now, if only to allow me to shake the negatives by putting them out there and dealing with them more fully.

I have been dealing with a series of tests from several doctors and the results are finally coming in. I had one test come back good. Yay me! However, two other tests came back with issues. As a result, I have had two more tests done to further review the initial results. I still have not heard from three other tests yet.

I still do not think I want to disclose the exact things that are being checked, as it could be a bunch of nothing to worry about. That being said, it is worrying just to have abnormal results and have to take more tests. I have been tied up in this drama of not knowing now for a few weeks and it can wear on the already sick body. It has done exactly that for me.

To illustrate, last night I was in bed and woke up to pain. Yes, the pain woke me up and forced me to sit up and try to get it to stop. I only had over the counter NSAIDS to take, and believe me, they did not help much. I found myself crying and in pain and wishing I could just go back to sleep.

I am going to see about being more proactive in my care again as this pain is crazy to endure when I should not have to. I could be a druggie ont he streets and get the relief I need but no, I am an honest person who cannot seem to get the pain relief I need. Oh well, you can read my tirade on that in the post from some time ago called “Police Mentality and Pain Control“.

I will share what is going on when I know more about it myself. Until then, I apologize for not posting and being a bit on the selfish side. I am just overwhelmed and hope these things get resolved sooner than later. Thanks for letting me spout off and get it out there! It really helps me to be able to vent on this blog and then feel better.

More, Again? Really?

Standard

This post is yet another in the long lost of things that have gone wrong for me lately. I am telling this because I am wanting others who are “normal” to understand how a simple thing like a cold can become something even more menacing when you have an autoimmune disease.

It started out innocent enough, just a cold.  I don’t know where I got it, but I got it and it wasn’t that bad, at first that is.  My husband got it and so did my mother-in-law (who lives with us). This is where the similarities end.

I began to have a fever and chills, sore throat, body aches, ear aches, headaches, swollen lymph nodes in my neck and under my arms, a non-productive cough, tons of sneezing, my face began to look like a malar rash was coming in, and my face was swollen from the sinuses being so full, and a tightness in my chest. I could not eat, felt worse than I normally do, and was basically laying around.

This happened over the weekend so I did not call the doctor, but I tried home remedies that I have used over the years to help me muddle through it. I made honey and lemon tea (I wish I could have gotten some good whiskey but it was not happening), I kept hot or cold packs on my head and face (depending on whether I was hot or cold I used the opposite), I used my neti pot more frequently, I made sure to keep hydrated, and I used my nebulizer for the dry cough.

A couple of days into this and I felt better and thought the worst was over. WRONG! I had a brief reprieve for a day then back into the abyss again. This was on Monday so I broke down and called my rheumy. He ordered me prednisone to help me get on track quicker and prevent the flare I am in from getting worse and to keep me from pleurisy (which I can get easily with these things happening). I then talked to my family doc who ordered me some antibiotics.

It has been two days since them and I think the corner is getting turned. I got out into the cold and snow to go to the store with my hubs. It was hard to do since I am still hurting, but I did it. I am not patting myself on the back, just stating a fact.

On to the next thing… can you believe that there are people out there who actually think I was being a BABY about a mere cold??? That is why I posted the posts about lupus and the flu in an attempt to educate so others will not open their mouths and insert their feet. I mean, come on, if I can live in pain for most days, why should I gripe about a mere cold? If it is overriding the pain I normally feel, then listen up! I am in PAIN and I AM SICK! My lungs get weak quick ( I have asthma) when I get these bugs and it is not something I can buck up and get over!

It really burns me that there are people out there who think I am being a baby. I say, if you have not walked in my shoes, then tread lightly and do not impose your limited medical knowledge on me.  Believe me, if I could, I would “get over it”. I would love to walk in your shoes and have the energy to get all I want done. I would love to be able to have a mere cold and not be any sicker. I would love to not lay in a recliner or bed on the days when I am the most sick. I would love to work again!

The truth is that I cannot do a lot of these things anymore and if you need to put me down with your snide remarks and innuendo to make yourself feel better about yourself, then take a long walk off a short pier please and leave me alone. I cherish the real friends I have around me and I do not need anyone who has to be mean to others to elevate their own stature (at least in their mind). It is petty, small minded and just plain ugly to treat others with so much disdain that you belittle their illness and them and then can go off and laugh later thinking you were so clever.

I hate to break it to you but the truth is, you really make a fool of yourself because others can see through you and actually feel pity for you, because you cannot or will not ever understand the feeling of empathy. I feel sorry for you too.

In the meantime, I will deal with each bump along the way and I am so thankful that I am here for today! Little things are big things to me! I am blessed int hat I have dear friends who genuinely love me,and I do not need the pettiness.

I think when I am sick these things hurt me more than when I am feeling better. I apologize for the negativity. Sometimes, I just have to get it out or I will explode.

I hope everyone is safe and warm and dry out there! Thanks for letting me vent!

Wonderfully Me

Standard

I seem to be quick about the negatives in this journey with lupus, but for today, I want to share some good news. For two days now, I have been on a new medicine and for two days I have felt like a totally different person. I feel alive! I have energy! I feel light!

See, I told you…good news indeed! I am finally feeling wonderfully like me!

The reason for this is I had my appointment at the pain clinic and they are addressing the oppressive pain I have been dealing with and working on a plan of action to make me feel better. The first step is the new medicine I am on. The second step is a tens unit to target my pain and the third step is massage therapy. Who knew?

For those of you who are not aware, I have been virtually bed bound for some time now. I only got out when I had to, like doc visits and grocery. Even those were hard to do because of the overwhelming pain. Some days all I did was get up for the bathroom and the rest of the time was spent in bed. Not sleeping, just laying or sitting and unable to do much but feel bad. It is not a nice way to live.

I never wanted to see a pain doctor. I had heard all the bad stories about pill pushers who serve the addicted population and that only addicts went there. It took one strong willed lupie sister to talk me into going. Ok, scratch that, she threatened to come to my house and make me go if I didn’t make an appointment myself. I am so thankful for friends like that. She cared enough to do that and make me go into uncharted territory for me. I was way out of my comfort zone here.

I never wanted to go because in my mind, those who needed those things were weak and unable to be in control of their lives and take charge of their pain. I was taught growing up that you overcome pain by sheer willpower and grit. Well, how did that work out for me? I was reduced to being in bed most days because of the pain I was in.

When I finally got my nerve up to talk to my rheumy, he gave me a pain med that did nothing for my pain. After my friend and several other lupies I had talked to told me their stories, I decided to make the appointment. I kept the appointment and wow! why did I wait?

You see, I had done research and even posted articles on this blog about pain management. I was a fraud though, because even though I acknowledged that others needed stronger pain relief for a better quality of life, I would not do it myself because of these thoughts in my head I mentioned above. It is like saying “For you it is great but I am not that much in need”. WHAT!?

When your quality of life is impaired to the point that you are almost completely bed bound, how much lower do you want to go? So, I am here to say….if you are living in pain, get help! Do not think like I did and do nothing. I mean, unless you enjoy being in pain.

Some are fortunate enough that their doctors will help them in pain management. Others may have to seek out a pain clinic for their relief. The bottom line is how bad do you hurt? Today, I can honestly answer that even though I still have pain, it is in the range that I can function and get out of bed and do things! It is still there, just not as bad as it was.

I am thankful for those who gave me their honest input and lovingly pushed me to do this. Thanks is not enough! They have helped me to be able to live better, love much and give to others. The gift of these friends is immeasurable. Thank you all and you know who you are! 

Winter has arrived

Standard

I must confess that I have thoroughly enjoyed our Indian Summer this year. Now that it is December, the cold arctic air has arrived and snow along with it. The beautiful white fluffy flakes have been falling off and on for two days now. The roads have not been bad, considering it is the first snowfall of the season.

I ventured out yesterday to pick up a few groceries. Most normal people do not think twice about getting ready and heading out, even in bad weather. I got dressed and put my coat on and headed out. I got to the grocery and while I was shopping, I began to experience pain in my legs, specifically in my knees, ankles and feet. After checking out quickly, I headed back home.

I arrived home and immediately took my pain medication (the one that really does not much). I was a total grouch too. I seem to be a grouch when I am in pain. At least, that is what my family tells me. I recognize it as well. After what seemed like a long time, the pain began to subside somewhat.

I posting this because it shows how I can feel decent one moment and in a short time, feel intense pain in my joints. The pain was triggered in part by the cold air I had been in. I have found when it gets cold, my body rebels and causes pain to occur.

My story is not unique. Most of us lupies experience more pain and flares in the winter, and it seems that the colder weather does trigger the flares and pain. This is the time of the year I call my hibernation period. I call it that because I do not get out much, and actually go out of my way NOT to go out. It is the only way I can feel like I can control my pain.

On the plus side, this last week I had my yearly eye exam and it went well. I have a new rx for glasses so I have to get them soon. The cataracts are still growing, but they are not as invasive as they could have been. Whew! Unless they get worse, I do not have to go back for one year! I go once a year because of the medication I am on, called plaquenil. It is an anti malarial drug which can affect the eyes when used long term. I have been on this medication for ten years or more now. To prevent the possible side effects, I have to go once a year and do several tests just to make sure all is well.

Next appointment is with the pain clinic for my first visit and then I also have an appointment to see the orthopedic surgeon about my knees. Finally, I will see my surgeon that takes care of my stomach. This month is the month of doctors. The good news is that once it is over, I should be cleared again for a few months at least.

When you have a chronic disease like lupus, you develop a “team” of doctors who take care of various aspects of the manifestations of the disease. I personally see my family doctor, a neurologist, a rheumatologist, a surgeon, an orthopedic surgeon, and my opthalmalogist. On the periphery are my other doctors, which I see as needed. One is my cardiologist and another is the gastroenterologist.

Well, in the meantime, I will update as I go through all of these. I am hoping to have more survivor stories soon from some of my friends. It is my hope that even if it helps and encourages one person, it will be worth it!