Sjogren's (pronounced Show-grins) and Chronic Pain

Not Just a Nuisance! Please understand that I do not feel in the least bit bitter about my illness. I am a very happy person because of Jesus Christ. He is so wonderful to me and my life would be nothing without Him. He gives me a deep abiding joy that no one else or nothing else can give. I'm grateful to Jesus for my life. Good News

Updates concerning the ongoing journey are at the bottom of the article!

Monday September 29, 2008

My story: Have you ever had chronic pain? You know, the kind that won't let you eat, sleep, walk, sit, stand (on your feet or on your head --- grin ) the roll on the floor, won't go away pain! The first seven years of my illness no one knew what was going on only that from time to time I had problems with severe pain and diminished motor skills. After seven years it was thought I might have Lupus, but then through testing it was discovered I have Sjogren's Syndrome.

What is Sjogren's? In plain English, it is an auto-immune disorder that mistakenly identifies the moisture glands in your system as enemy invaders needing to be destroyed! In destroying these glands the body wounds itself and your system dries out, producing dry eyes and mouth. I was told it would be a mere nuisance more than anything and I would have to drink lots of water (making sure not become dehydrated) use eye drops and be on a mild NSAID's, for inflammation. It was not a nuisance! It was more like a nightmare!!

When I first got sick my husband would roll me on my side in the mornings while I was still in bed. He would sit me up and help me get dressed. Once I was up, he would help me walk. I cried, rocked, rolled, (and got... you know, the why me grumbles). As time went by, lumps started popping out on my legs, eventually turning black and blue . Sores spread throughout my mouth. My digestive system went wacky; irritable bowel and reflux became big problems, causing vomiting and chronic diarrhea. Also, I got urinary tract and kidney infections. A person with Sjogren's can develop scar tissue in the urinary tract due to the excessive dryness of their system, which can prevent your bladder from emptying completely.

Also, I was so exhausted that all I wanted to do is sleep and could not do the simplest of jobs. My muscles felt like heavy weights. Swollen glands and a sore throat were constant companions, making swallowing difficult. All that was happening to me was not a mere nuisance, but was severe and debilitating.

My doctor explained in understandable terms that the disease can be mild, with symptoms of (dry eyes and mouth, swollen glands and sore throats) OR it can be severe like mine. At first the doctor put me on stronger NSAIDS. I got worse! Finally, he put me on a high dosage of Relafen; relief came, but then there was still vomiting. Tagament was added to my medications to help me with the reflux and vomiting. After being on Relafen for awhile...it quit working. Eventually, I was put on stronger medication with a warning from the doctor about the possibility of blindness and blood disorders. Needless to say, I was afraid to take it because of the side affects. I did take it for awhile, but it did not seem to help me and I was so tired of dealing with the pain and the meds. It was at this time I said, "Okay Lord, I have had more than I can take." Questioning, "Why me?" At that time I came across this verse; Jeremiah 15:18 "Why is my pain perpetual (continuing or enduring forever), and my wound incurable, which refuses to be healed? Will You surely be to me like an unreachable stream of waters that fail?" I could identify with this prophet and his pain! Although, Jeremiah's pain was because his people were not listening to and following God. It was a never ending pain to him...a hounding pain. I felt the same way... this pain was never ending.  Later on in the chapter God also gave Jeremiah a promise... so I decided to cling to that promise. And to quit being a "drama queen" with God.

I decided I had two choices. One, I could let the pain be my enemy and turn me into a whining, irritable, cranky, unhappy, bitter; "Why me, kind of person." Or, I could let the pain work in me the fullness in Christ. I am not saying there aren't times of frustration, tears, or that being cranky once in awhile doesn't happen. Growth takes time. Pain teaches compassion for those who are in pain. Who can better understand another person's pain than someone who has gone through it. Jesus understands our pain better than anyone. He died for mankind and yet rejected. He suffered emotional and physical pain, like no other person ever has suffered. He took on Himself the pain of all man kind. He understands so completely. I knew He would always be there for me.

For awhile, the Sjogren's went into remission and I went off of my medication. About Jan. 2000 I started having problems again and had to go back on medication. Then in the summer of 2000 the Sjogren's went into remission once again. It is now November of 2001 and I am doing very well...there is no pain from the Sjogren's and my energy level is pretty good as long as I don't over due. I do most things I want to and stay very active. I try to keep my stress levels at "manageable" levels.

Stress is always a major factor in any illness. It is important to manage fatigue through alternating types of jobs. Learning that I can't mow lawn, clean my whole house, paint, pull weeds, do dishes, laundry, and get meals all in one day was difficult. I've always been a very driven person --- wanting to accomplish a lot in a short time. I learned that it is not worth it to try to do so much. If you are one of those people who have a major illness with severe or debilitating pain, give yourself a break. Do just what you can without hurting yourself or paying the price... you can't take the "clean" house, the clothes, the car, or anything else with you when you die... "Stuff" and work is just not that important... meaning there is more to life. Leaving a legacy of love in my relationships with my family, friends and those I meet along the way is more important. Also, spending time in relationship with Jesus Christ is the most important... it puts everything else in perspective..

Things that are helpful: Exercise is a good way to help with the stress. A few months ago I started walking 2 miles a day. Also, I do stretching exercises everyday. Also, gradually, I knew when unable to sleep, to pray. When depressed, to praise God. Another helpful thing is to put on music... wow .... music does wonders for your mood. Also, soak in the tub, read a book, light some candles, sit and relax with a cup of coffee or tea in quiet. Organize jobs by what is really important and let the rest go...

Make sure you surround yourself with Christian friends who understand, but will remind you of God's promises. Friends who will tell you when you are feeling sorry for yourself. LOL

Pain and disease don't have to be carried like a spoiled overweight child on our backs, but instead we can walk beside pain. We CAN manage pain. Remember this; Rev. 21:4, "And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying, and THERE SHALL BE NO MORE PAIN, for the former things have passed away." Sometimes in the midst of our pain we might feel abandoned, but we are not. It is during these times we have to walk by faith and not by sight.  Read your Bible and pray when possible. It is nice to have a daily plan to read and pray.

I would like to mention that not everyone will understand what you are going through, some will say, "Well she (or he) looks fine to me." Or, "They don't want to work, that is what the problem is," or a number of cruel things. God knows all about unjust criticism. Jesus Christ sees the big picture. He enables us in our weakness to live, love and work for Him. He is a God of miracles. Besides we have to remember that not everyone will see what we want them to see or understand. It is just a fact of life, so there is no sense is wallowing in self pity concerning other people's opinions. =)). We need to be confident in who we are in Christ.

August 2003 Things are going okay with the Sjogren's. I'm still learning about not over doing, which has always been a problem of mine. I like to stay active. I have not been able to walk the two miles because of the heavy load this summer. I need to get back to it... if it ever stops raining. LOL Maybe fall will be better. =) I am now taking Ultracet, which seems to help keep things under control when the pain is really bad.

I praise God that He has been helping me to "learn" to manage the pain. At first I didn't want to take the Ultracet, but it is better than some of the stronger meds that I have been on without so many side affects. So, I need to have a good attitude and thank God that I found something to help me. Of course, I pray that the Sjogren's will go into remission again. However, God helps me not to complain too much about things. Whenever I go through tough times, I just need to remember to keep my mind off myself and keep it on helping others and doing what God wants me to do. Big grin! =D

August 2005:

Lately I've received several letters from people all around the world with Sjogren's. I felt I needed to update once again. It has been awhile (over a year) since I've updated this page. I've come a long way in dealing with the disease. I can handle the pain much better. I do have some very bad times, but I am still able to do many things in my home, travel, work on the computer, sew, knit, do crafts, garden, spend time grandchildren and many other things. I am not able to do some of the things that I used to do --- like heavy lifting or just going all day long without a break. I still have weeks that I need lots of rest and sleep. I try not to fret (too much) lol 

September 2008:

Another update: Besides having been diagnosed with Sjogren's years ago, I also have been dealing with mild Psoriasis for years. Over the last two years the Psoriasis has become severe. I have used many kinds of creams and tried sun light treatment. Those worked somewhat until it became severe. Recently, I was diagnosed with Psoriatic Arthritis in August of 2008. Scary stuff... Some people with Psoriasis develop Psoriatic Arthritis. I was put on Trexall (Methotrexate). I was prescribed the highest dosage, to take once a week) I prayed that I would not have to take it more than that and don't know if they give it more often than once a week. However, I didn't have to worry about the medicine because I soon developed many side affects from the medication. I called the doctor and he took me off it. That was kind of a relief. Scary medicine... which can increase the risk of lymphoma. I was given a high dose of folic acid to help keep the white blood cell count up. Interestingly, Trexall is also used to treat Sjogren's. And another interesting fact is that people with  Primary Sjogren's have a 5 % risk of developing lymphoma, the same percentage risk that taking Trexall carries.

Now I have this new diagnosis of Psoriatic Arthritis. Confusing to say the least. It is hard to tell which is causing the problems sometimes because  both carry similar symptoms. Psoriatic Arthritis is considered to be in the same category as Rheumatoid Arthritis, an autoimmune disease... Most physicians consider Sjogren's to be secondary when there is an autoimmune disease present such as Rheumatoid Arthritis. However, Primary Sjogren's comes before you develop other diseases. I'm not really understanding why there are really two categories of Sjogren's. The only reason would be --- not that one is more severe --- it is that one comes before or after other diseases. This is something I will be discussing with my specialist. For a long time I thought one was more severe... but I'm guessing not. Too much info sometimes.

The next step is an appointment with the specialist in October. I am having debilitating pain most of the time, but am coping well and still trying to stay active. It is only God that gets me through some days. Another development, is that my voice has changed even more due to the Sjogren's. I always sound like I'm losing my voice....every day is the same in regard to my voice... my throat is always sore....daily. I seem to be in a constant state of dehydration, probably have to cut the sodas and coffee... this condition of dehydration worsens sometimes and I get horrible migraines, with vomiting that leads into dry heaves. It is all very tiring. Also, my potassium goes low sometimes, which has its own set of problems. I'm having problems with the muscles in my hands, legs, back, feet, etc.... knotting up. It is very painful. Sometimes this makes it difficult to go horse back riding, something I don't intend to give up. Grin.

The Ultracet was not doing the job to help take the edge off the pain. I'm now taking 2 every 6 hours... some people say you can take 2 every 4 hours, but until my physician tells me that, I won't be doing it. At this point I have no idea what my options are... it is hard to wait, but God is faithful. I can have joy through all things because of Christ and what He has done for me. I'm learning that gratefulness and focusing on others and God, helps a lot. One of my problems is that I have a great aversion to taking strong medications that cause other problems. So, sometimes I think learning to deal with the pain through natural means is better.

And I'm now in the process of trying to find natural ways to stop the damage done to my joints because of the Psoriatic Arthritis.

If you have Sjogren's and would like to write to me... my e-mail address is below. I'll be glad to listen and to pray for you.

Another update coming soon 09/29/2008