Over the last few years I have ran into many challenges living with Lupus. I have not been able to work, travel as much or even socialize with my friends. Some of this I have accepted but some I just struggle with everyday. There will be good days where I can just laugh through the day with a giant smile on my face and others I need to sulk a bit and have a good healthy releasing cry. With all of the sacrifices I have had to learn to make and changes I have had to accept there is still one that seems to always take me off guard. This would be my tolerance for pain.
Yesterday I had my first official emergency room visit in 2014. I went in with breathing issues.......shortness of breath and an ache in my lung that just would not go away. It started about four days ago and I thought I could just wait it out but by yesterday it still was not getting any better and was possibly starting to get worse. So, I put on my best pajamas and lugged myself to the hospital emergency room.
At first the doctor told me he was pretty sure it was pneumonia due to the crackling he could here in my lungs. We would need to do some lab work and have a chest x-ray done. The chest x-ray was clear and so he was a little concerned and decided that we would need to do a CT Scan of the chest. For those of you who have never had a CT Scan before they shoot dye through your veins so that everything lights up with contrast and we can see clouds of pneumonia, blood clots or any other type of inflammation. This dye actually sends a hot sensation from your head to your toes and it feels like you are peeing your pants!!!!!!! I always tease the scanner man that he better watch out because I know one of these times it is going to happen.......I am going to pee right on the table!!!!!! At least we all get a little chuckle out of a serious situation.
After all the tests were said and done we discovered I have a bout of Pleurisy in my right lung. Pleurisy is inflammation between your lung and chest wall. The doctor told me it is like sand paper rubbing whenever I breathe in which explains the horrible pain. It makes it very difficult to breathe due to the response your body is receiving whenever you take a breath. I have to actually force myself to take deep, clear breaths to help the healing process begin. Along with my breathing exercise I am back to being best friends with my arch nemesis.........STEROIDS!!!!!!!! AHHHHHHHHHHHHHHH!!!!!!!!! Overall I am going to be just fine and because Pleurisy is common in Lupus patients the chances of this now being another issue we will have to constantly look for behind every corner is high.
The hardest part of this entire situation over the last few days is that the pain is severe with this condition but I am so used to pain that I had no idea my pleura lining was so inflamed. Over the last few years this has been such a challenge for me. I will let kidney infections and bladder infections go way to long without treatment not because I am being stubborn but because I do not feel the hard pain others feel because of the constant pain I am always in. My mama told me she thought I was getting better and not complaining about the pain as much but in reality I just could not identify how bad the pain actually had gotten.
Someone who has a disease that causes chronic pain on a daily basis becomes exhausted at the task of explaining the constant pain they feel everyday. To us we feel as if we are nagging or bringing everyone else down. We tend to play down the pain overtime leading to us actually altering our pain tolerance. The pain is there and most of the time it increasingly gets worse. The awareness we have to have with our own bodies is constant and the signs have to be watched every moment of everyday. Resting must be done even if you have to force yourself and pain diaries now are kept to share with family , friends and doctors. It is just plain old exhausting!!!! As the patient living with the disease itself you are constantly frustrated because you no longer can truly tell what is going on in your own body and our family members can become frustrated and may not understand because if it was as bad as the doctors are saying it is then why did we not speak up!
Well, the answer to all of this is simple.......patience. I must be patient with myself and be vigilant in regards to my disease and little signs that may not seem to be important to the average person. Family members and friends..........patience. Take your time with us and try to understand what we may be feeling and if you are frustrated with the situation trying putting yourself in our shoes and you will feel what true frustration feels like. Lastly, it all comes down to working together as a team. The patients, families, friends and the doctors, everyone has to constantly watch their loved ones and be a little more sensitive and aware to the every day wobbles and bobbles and pain that sneaks in and sneaks out. Together we can take this disease and have control over it......or at least have the upper hand!
