Home and Away

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Do you get out much in winter? Do you find yourself wishing you could?

I am pretty much housebound in winter. My reasonings are pretty simple. I have to be careful not to slip or fall thus breaking bones. I also tend to have worsening of pain after going out into the cold. I have raynauds too so I am more vulnerable to the cold. If you add in the migraines from the whole hot to cold, well, you can see why I am reluctant to go out.

I am fortunate in that I can maintain my spiritual health by phone and visits from those in the congregation. When it is time for my meetings, I call in and I can listen in and it feels like I am there. It is a loving provision and I am grateful for it.

It is easy to get depressed during the winter, and more so because of having to stay indoors. It is important to get sunlight into your day even if only briefly. The sunshine truly brightens your spirit and helps those prone to seasonal affective disorder by giving you the needed sunlight.

I admit to not opening the curtains much here but it is because if the sun is too bright, it can trigger a migraine. It’s a catch 22 for me so I try to dampen down the brightness so I can have the needed sunshine, just not too strongly.

I hope you all are faring well this winter day. As I write this, I am looking out onto a deep carpet of glistening snow that is sparkling because of the sun shining into it. We have around five inches out there right now and more forecast for tomorrow. This has been one of the snowiest winters in recent years. I don’t mind too much since I can watch it from inside my warm home. However, if you have to go out, please be careful. Have a great day!!

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It’s Winter

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Well here I am again. Griping. Complaining. Hurting. Flaring.

This is one of my rants and scream kind of post. You have been warned.

The last four days have been rough. I am in so much pain. Everything hurts. I do mean everything. My joints are throbbing like crazy. My hair is still falling out. I am running a low grade fever. I feel like I am slogging uphill in sand up to my waist! It’s just hard to breathe even.

I called my doctor and I am on prednisone for a bit. The hair loss I am fighting by getting a new short hairdo. I am trying to live but find I am either in bed or the recliner. It makes it hard to function.

As for the “issue” of my husband, he is supposed to be going to Kentucky to visit his mom. He was supposed to leave today but decided not to. He hasn’t packed anything yet so I don’t expect him to go anytime soon. He enjoys smashing any peace I can find. Of course, it’s still daily belittling and bullying. If I rest he comes in and gripes about all the things I should be doing. However, if he feels sick, he does what he wants and heaven forbid I say anything. It’s a mess.

In the end, it just sucks lately. Pain. Flare. Life. Hope you all are pain free!!

What now?

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I’m frustrated. I have had this pressure in my shoulders and lungs for a week now. It feels like when you have surgery and gas gets in your shoulder. Except my lungs feel tight too. Any input appreciated. I just saw my rheumy last week before this started. I also have had bilirubin and white blood cells in my urine. It’s like I am falling apart. I guess I will see my gp on Monday if it keeps up. Sigh

Lupus Go Away!!

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I began my day like any other. I woke up at ten, had breakfast and coffee, and sat in my chair to watch tv until I was fully awake. Here is where things went wrong.

I woke up at five pm. Yes, I fell asleep again. It was like I was in a coma. I would wake up briefly but couldn’t move. Like I was paralyzed. After a bit I would doze back off. Lupus brain fog. I hate it!!

So despite being back on steroids, I have slept this whole day away. I got up at five and made some soup beans and toast. I know protein is good for me. I also made another cup of coffee. My brain is still foggy. I I cannot believe it but I truly could go back to sleep again for the night. I guess for today, lupus wins. One battle for today is what lupus wins. However, I will win this war!!!

It’s funny how lupus does this.

By the way, I have a question for you all. Do any of you ever get little itchy blisters on your finger tips that burst and itch more? Just wondering.

Test Results

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Well, this morning I got the call from my doctors office. The doctor had reviewed my results and the conclusion is that there is an abnormality in my left hip that can cause my hip to “catch” while walking apparently. This “catching” can cause pain in my hips and spine. I was then asked by the office personnel if my pain had receded over time. Ok, I very politely told them that NO, it was still as bad as before despite stretching exercises and walking. I also said that the pain was very present and nothing had changed. At. All.

So, tomorrow I should hear from them again with anything the doctor has to say about nothing changing.

I am at wits end. I have basically been living in extreme pain (at least 8 out of 10 and I have a high threshold tolerance for pain), and NO RELIEF!!!! I want to scream!!!! I want to cry!!!! I just want this pain to STOP!!!!!! Is that too much to ask???

More on Sarcoidosis

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I have an old high school friend who suffers from this. I am going to find more information if I can. I know many of us have overlapping disorders so this may be helpful to you too. I got this from http://www.nhlbi.nih.gov/health/health-topics/topics/sarc/

 

What Is Sarcoidosis?

Sarcoidosis (sar-koy-DO-sis) is a disease of unknown cause that leads to inflammation. This disease affects your body’s organs.

Normally, your immune system defends your body against foreign or harmful substances. For example, it sends special cells to protect organs that are in danger.

These cells release chemicals that recruit other cells to isolate and destroy the harmful substance. Inflammation occurs during this process. Once the harmful substance is gone, the cells and the inflammation go away.

In people who have sarcoidosis, the inflammation doesn’t go away. Instead, some of the immune system cells cluster to form lumps called granulomas (gran-yu-LO-mas) in various organs in your body.

Overview

Sarcoidosis can affect any organ in your body. However, it’s more likely to affect some organs than others. The disease usually starts in the lungs, skin, and/or lymph nodes (especially the lymph nodes in your chest).

Also, the disease often affects the eyes and liver. Although less common, sarcoidosis can affect the heart and brain, leading to serious complications.

If many granulomas form in an organ, they can affect how the organ works. This can cause signs and symptoms. Signs and symptoms vary depending on which organs are affected. Many people who have sarcoidosis have no signs or symptoms or mild ones.

Lofgren’s syndrome is a classic set of signs and symptoms that is typical in some people who have sarcoidosis. Lofgren’s syndrome may cause fever, enlarged lymph nodes, arthritis (usually in the ankles), and/or erythema nodosum (er-ih-THE-ma no-DO-sum).

Erythema nodosum is a rash of red or reddish-purple bumps on your ankles and shins. The rash may be warm and tender to the touch.

Treatment for sarcoidosis varies depending on which organs are affected. Your doctor may prescribe topical treatments and/or medicines to treat the disease. Not everyone who has sarcoidosis needs treatment.

Outlook

The outlook for sarcoidosis varies. Many people recover from the disease with few or no long-term problems.

More than half of the people who have sarcoidosis have remission within 3 years of diagnosis. “Remission” means the disease isn’t active, but it can return.

Two-thirds of people who have the disease have remission within 10 years of diagnosis. People who have Lofgren’s syndrome usually have remission. Relapse (return of the disease) 1 or more years after remission occurs in less than 5 percent of patients.

Sarcoidosis leads to organ damage in about one-third of the people diagnosed with the disease. Damage may occur over many years and involve more than one organ. Rarely, sarcoidosis can be fatal. Death usually is the result of problems with the lungs, heart, or brain.

Poor outcomes are more likely in people who have advanced disease and show little improvement from treatment.

Certain people are at higher risk for poor outcomes from chronic (long-term) sarcoidosis. This includes people who have lung scarring, heart or brain complications, or lupus pernio (LU-pus PUR-ne-o). Lupus pernio is a serious skin condition that sarcoidosis may cause.

Research is ongoing for new and better treatments for sarcoidosis.

Sarcoidosis Clinical Trials

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. To find clinical trials that are currently underway for Sarcoidosis, visitwww.clinicaltrials.gov.

 

Stress Much?

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It’s a new day. New stress. Oh well. Suck it up buttercup. No matter how many times I get yelled at, it seems there are always many more to find. I apologize and it gets thrown back in my face. No reasoning allowed. Heaven forbid I actually finish what I am saying. Interrupting is the name of the game. If only ears would listen to what I am attempting to say, then how much easier would it be to discuss. I do not call yelling at someone and not allowing them to try to talk, a form of communication. I call it bullying and belittling. Well I am going ahead with plans to work on the house. Apparently if you pay all the bills it entitles you to do whatever you want, or don’t want to do. Forget that I buy all the food, etc and am basically the cleaning lady, cook and secretary. Among other things. Oh well. I try. Pushing me away and verbally assaulting me is not my idea of a good day. Sad.

As you can see, things are not good right now. I wonder if this is the “dry drunks” you hear about alcoholics having. I hope so because if this is his true self, I am in trouble.