Remission Answer

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I last posted that I might be in remission, or at least working on one. I was hopeful, because I was finally getting things done with little pain. I walked two days in a row, half a mile each day. I was busy starting my seeds for my garden. I was making plans for doing things this summer with all my energy and feeling so good. yeah, I was so happy and getting excited about possible remission. Plans to live and enjoy these pain lowered days. Of course, lupus is unpredictable.

The answer to remission is that no, I had a brief glimpse of feeling “normal” and now I am back to painful living with lupus. I think the cold front that came through didn’t help any either. Ouch! My joints are screaming in pain right now. It is hard to walk. It is that all over pain and fatigue with it. For the uninitiated, it is like having the flu but worse because my joints and painful to the touch and it is hard to move.

I at least got most of the spring cleaning done and can relax a bit about that. I got several things done. It feels good. I wish my body would cooperate with me but lupus doesn’t play fair. Oh well, I am alive and kicking at least. Have any of you had this situation happen to you? I hope you are all pain free and living life to its fullest!

Remission?

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Hello! Well, I am excited but trying to remain controlled. You see, I am actually feeling better, much better than I have for some time. I am not sure why the change but I will take it. Remission is a word all of us with lupus want to hear. To be fair, I am hoping it is remission but the doctors say I have to be feeling good for six months before we can actually call it remission. So for now, let’s just say I feel good.

When I say I feel good, I mean that yes, there is pain, but the pain is minimal. It does worsen at times but I am not a slave to the pain right now. I have been to the rheumatologist and my labs are great, with the exceptions being my SED rate and ANA.  My doctor wrote me a prescription for prednisone and wants me to take low levels for a bit. I took three days worth and stopped because I felt better before I took it. It is good to have around in case of flare up though so I am armed and ready should a flare decide to come a calling.

Since my labs were pretty good, the doctor decided that I do not need the benlysta infusions for now. I was on the drug trials for that drug and it really did help me when I was taking it. I was on the trial of injecting myself in my stomach. It was not difficult and it did help so I am glad the infusions are there should I need them.

For those who are not sure what a lupus remission is, here is some information I culled from lupus.org:

Understanding lupus

How is remission in lupus defined?

There is no formal, approved definition for lupus remission. However, the word “remission” is sometimes used to describe certain situations. One situation is a person who presents with a disorder which appears to be systemic features of lupus but after a while, their symptoms, physical exam findings, and blood abnormalities go back to normal and stay that way, even after any prescribed medications are stopped. Some doctors might feel that the person did not truly have lupus, but probably had something else causing lupus-like problems (which can be seen with certain infections, such as parvovirus infection.)

The more common usage of the term “remission” would be to be “in remission on medications, or quiescent (quiet).”” This would mean that the person with lupus is taking Plaquenil® (hydroxychloroquine) and/or other medications and is doing well with no evidence of lupus manifestations such as arthritis, rash, kidney involvement, blood cell count problems, etc. This is the goal for most people with lupus, but is not always possible.

When a person is in remission while taking medications, doctors always try to taper steroids down to the lowest possible dose, and, if possible, to stop them. Most people are counseled to keep taking Plaquenil long after the disease is quiet. Non-steroidal anti-inflammatory medicines such as ibuprofen, Celebrex®, naproxen (Naprosyn®), etc. should be stopped if there is no pain. Immunosuppressant medicines (such as methotrexate or Imuran®) can sometimes be decreased little by little, but this all depends upon the exact history of the individual’s disease.

Medically reviewed on July 18, 2013

So there you have it. Yes, I am still on my medications. I am taking my plaquenil daily. I have prednisone for any bumps in the road. I am taking Tylenol daily still for my knee. Otherwise, no chemo drugs (Yay!) and all is quiet right now in my body. I hope it remains this way because I have so many things I want to do and have been unable to do. Who knows? Remission? Maybe. Possibly. Hopefully. We will see.

On another topic, do any of you garden? This spring I am planting my garden and I have already started some seeds. I get my bean and tomato seeds from a neat place that has non GMO heirloom seeds from the Appalachia regions. They are truly great producers of veggies and taste so much better than those modified seeds do. The place I get the from is in Kentucky. It is called http://www.heirlooms.org. I highly recommend their seeds and they show you also how to save your own seeds year after year. The mans name is Bill Best and he will talk to you and help you  in any way he can to preserve the seeds that are nutrient rich and much tastier than anything on the market.

If you garden how do you preserve your foods? I dehydrate and can plus I do freeze a little. I would much rather have my food shelf stable in case of electricity going out. I find pleasure in growing the garden and preserving it so we have good foods that I grew and we can have them in winter. I love the whole process. It makes me feel good. Plus, I love to cook so it really is enjoyable. I know what is in the food, any additives, and it is much healthier than buying the food at the store.

Hope you are all feeling well and that the warm weather lifts your spirits!

Why Are People So Insensitive?

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Hi everyone…sorry I have been gone for a bit but life has been extremely full lately. I apologize for the absence and wish to say hello to all the new folks out there in lupus land who have joined our little blog. That being said, on to the topic of the day.

Why are people so insensitive?

Just two days ago I had a new thing crop up in my journey with lupus and life in general. I have developed high blood pressure and my doctor decided I need medication to control it. No biggie, right? Wrong. You see, despite having a strong genetic back ground of heart disease, and actually having electrical issues resulting in a coronary ablation, I have always had good and low heart rate and blood pressure. It was the one thing I could hold on to and say that at least I was good on my heart. Until now, that is.

I know many people have issues with this. I get that. As a matter of fact, I only told a few people that this happened to come to light. My so-called trusted circle. The response?

“What DON’T you have?”

Have you ever heard this? I have from several people in my life. I know people say things not meaning to hurt you. I get that people do not understand the complexities of our disease(s). They do not understand how sometimes we develop overlapping diseases along with lupus. I get that. However, I find this is one of the things that hurts me the most. People ask you about your issues specifically and when you are honest, they ask you something like the above comment. It hurts.

I have decided to really stop educating others about this disease anymore with the exception of this blog. My friends and family will not hear any more about what is happening in my healthcare life. They ask, but they really do not want to know. Most of my family seem to think I am just lazy and want attention. Well, so be it. My resolution is to live my life, do what I have to do to stay living, and pretend all is well when I am asked how I am doing.

Yes, I know, I seem a bit sensitive. It is just that people say these things and they seriously hurt me. I am astonished at the audacity in the manner in which it is said even. Like I picked out a new thing to have wrong with me. Ok, well, I feel a bit better getting it off my chest. Have any of you dealt with people who are insensitive and even cruel in their comments to you?

Simple Things

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A lot of people overlook the simple things, the small things, each day. They are focused on getting that new house, getting that pay raise, looking far down the road. That’s not bad to do but in the hustle and bustle of working towards those goals, they overlook the simple blessings all around them. My disease has forced me to slow down, way down. It was a struggle at first to figure out how to get through each day. However, by this mandated slowing down, I found all those simple things, those everyday blessings that I had overlooked before. It’s amazing how you can see Gods hand in every little thing when you pay attention to the little things, the simple things. My disease may not be pretty but it has opened my eyes to all sorts of beauty each day in my life. For that, I’m grateful, because it has shown me all the things that really matter. Friendship, love, family, faith and life are just a few of these things. I ask you to slow down a bit and look around at all your blessings. You will be amazed! Trust me, I know and try to daily find things to be thankful for, to keep my focus on these simple things that truly are the BIG things! Have a great day!

Recent Events

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I am sorry for the absence lately but I have good reason for not being around. I have been quite sick lately.  Sick emotionally and physically. Not good at all. I have had deep depression and stress like you would not believe. WARNING: This post has many negative things in it. Read it at your own risk. 

First, our furnace went out. We are making it because we have supplemental heaters we are using and ifit gets very bad, we can sleep in our heated garage. Next, we found out we have to move. Our home we live in is being foreclosed and we are unsure of where we will live because of this. We don’t even know how long we can stay once foreclosure begins. Its not our house so we are only involved in the length of time before we have to be out.

The next thing upsetting me is my husband. He is binge drinking for days on end, then sobering up for three days only to begin again. I am avoiding him/as/much as I can because I tend to be his target of choice when he wants to get aggressive. He is also getting Ativan from someplace and the docs told him not to never take it again because he became addicted to it in the past. He says it helps him with his panic attacks. I say quit drinking and they will go away. I tell you, he will be dead soon if he continues.

My health has had several twists and turns too. I have had a weird type of thing happen recently. I was sitting in my recliner when I started to shake uncontrollably. No reason for it. Just horrible shaking that lasted for a half hour or so. I could barely talk but I was aware of it the whole time it happened. I did not see the doctor or go to the er. If it happens again, I am to go to the er. Scary. It makes me wonder if the neurological manifestations are causing this from the lupus. I will find out when I see my neuro next month. Oh joy.

Finally, I saw my family doc because of a tooth that broke off and became abcessed. I am on amoxicillin to control the abcess until can find a dentist who will not take all my money to pull it. You know, dental health is just as important as body health. Why can we not go to a dentist when we have no insurance? I called the dental school and asked about going there. It was going to cost me over two hundred dollars just to walk through the door. I cannot afford that. In this area there are not any dentists who take those without insurance. It is sad that dental health suffers because of this disparity. Why doesn’t someone get on that bandwagon? I mean, forget Obama care, get dental coverage for everyone regardless of income. Real dental health.

So now I am down to the final things going on. I may have aspirated the other morning when I woke up vomiting. I now have congestion in my lungs and my doc wants a chest x-ray to make sure nothing is going on. I will get it tomorrow because going to his office today just plain wore me out. Oh and I did not mention the migraines I have had because of all these weather changes.

So, it has not been good around here lately. Here’s to hoping things get better in the days ahead. I just cannot take much more. My favorite scripture is 1 Corinthians 10:13. Please look it up. It truly does give me strength to endure and hope for what lies ahead. I hope your days are filled with laughter and love. This post has not been pretty, but it is truthful.

Have you ever… had uncontrollable shivering/shaking with sudden onset and unexplained?

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This title is about a question I wanted to ask you all… have any of you ever just started shivering uncontrollably with no reason, such as fever, and if so, how long did it last?

Tonight as I was preparing to go to bed, I began shivering uncontrollably. I mean it began in my torso and spread out to the extremities. It felt and looked like a seizure except I was fully aware of everything around me. My muscles were contracting as well. Now that it is over, I am aching all over. Mine lasted over half an hour.

I see my rheumy at noon today so this will be on the list of topics discussed  My neurologist told me last time I saw him that I have evidence of neurological manifestations from lupus. I see him in April so he will be informed as well.

I am curious to know if anyone else has had this happen to them. Thanks!