The following was in my inbox this morning. I can’t help but share it. It speaks for itself.
Praying for all of my brothers and sisters. You are all on my heart.
| From Max Lucado:
“Speak, Lord. I am your servant and I am listening.” I Samuel 3:9 We expect God to speak through peace, but sometimes he speaks through pain… We think we hear him in the sunrise, but he is also heard in the darkness. We listen for him in triumph, but he speaks even more distinctly through tragedy. |
You made me so happy the day you proposed and have continued to do so. I love you!
Sharing my life with you has been an honor and a delight. I’d marry you all over again. Thank you for being my rock, my protector, my best friend, my bubble tea lover and the best daddy in the world to our precious family.
But most importantly, thank you for saying that you’ve never regretted marrying me because of my illness. That statement has covered a mulitude of insecurities.
The devotional below was in my inbox not too long ago. I thought it beautifully gave a visual to what you have done for me as a noble husband.
Here’s to a long and adventurous road ahead. I can’t imagine traveling it with anyone but you by my side.
The following devotional is from Family Life:
Carrying Charge
Live with your wives in an understanding way, as with someone weaker, since she is a woman.
1 Peter 3:7
Each fall, a ski resort in Maine hosts an event that is little known to the rest of the nation: the North American Wife Carrying Championship. To compete, husbands transport their wives through a hilly, 278-yard obstacle course that includes a 20-foot trough of water and 2 log hurdles. They can carry their wives in whatever way suits their running style—piggyback, fireman’s carry or the more popular “Estonian” method, with the wife upside down across his back, legs crossed around his neck, arms held around his waist. The only enforceable rule is that she not touch the ground.
Ex-Olympians are sometimes among the contestants, while others are probably just there hoping for the first prize: the wife’s weight in beer, plus five times her weight in cash and a thousand-dollar voucher toward a trip to the World Wife-Carrying Championship in Finland. (I’m serious.)
Admittedly, this event sounds a bit crude and primitive. But there is nothing archaic about a wife needing her husband to carry her sometimes—to be her strength during a tough stretch of circumstances, to stand with her in prayer, to be the broad shoulders she leans on when life gets heavy.
Husbands, be there for your wife. Listen. Care. And if need be, carry her.
And, wives, don’t try to do it all by yourself. Lean on your husband. Let him help you. God will give him the strength. We need to be there for each other.
I went to get my hair done at the salon the other day. Done as in–getting my ridiculously crazy amount of gray hair colored. It is the one toxic thing that I refuse to give up. And believe me, I’ve given up a lot. If I had a few gray hairs—hmmm, maybe. But I have an enormous amount for my age. I would age fifteen years if I went all natural. Not happening, folks. I have enough going on with my body to make me feel prematurely old.
But this isn’t about feeling old or the toxic effects of hair dye. It’s about something the girl that does my hair said to me in light of the fact that I’m a Christian that didn’t sit well with me. My hairdresser knows that I have been dealing with joint pain and asked how I was doing. Initially, I gave her the same answer I give most people, which is–great. Because deep in my heart, I am, and I just didn’t feel like getting into it. But she persisted with sweetness and light and asked how I was really doing. Sigh… so, I felt compelled to be honest.
I kept it short and simple and told her that I was trying out some med.s and was seeing some improvements and experiencing some setbacks, and was taking it one day at a time. She smiled sweetly and said, “Isn’t it great that we have a God that can part a sea and crumble a mountain and it’s nothing to Him.”
(Oh dear God, I thought–where is she going with this?) I agreed and smiled.
And then she finished by saying, “And isn’t it great that we have a God that can heal your disease and it’s nothing for Him to do that if he wants. And it’s not terminal what you have, right?”
Ah, there it is…He can heal me if He wants to.
And what? It’s not terminal? Why not just say–what are you complaining about–at least you haven’t been told you only have a few months to live.
What she said stung a little. It felt as if she brushed aside my reality. And what I heard was–you should be grateful, at least you don’t have XYZ.
But for me, she really dropped the bomb with the healing comment.
I believe the God of the Bible is a God of miracles, signs and wonders. Do I believe He can heal me if He wants to? Why yes, I do. Have I prayed for healing? Yes, of course. Am I banking on healing? At this point, honestly, no. Does this mean that I am lacking in faith? Does it mean that I am not praying and believing hard enough? For me, the resounding answer is no. Of course not.
But I’m certainly keeping hope alive.
I have been trying to figure out why her comment bothered me so much. I mean, after all, I am glad that He is a God capable of healing and I know her intentions were well meaning. But I can’t imagine saying the same thing to someone else. What if he doesn’t choose to heal you? What if that isn’t His will for you? Where does it leave someone in the eyes of those that believe in God’s healing power when you aren’t healed? This seems to be where the problem lies for me. Unfortunately, it all too often leaves one under someone else’s judgement. And who are we to judge? Who are we to assume the role of our Savior, God Almighty sitting on the throne.
Isn’t it enough that many of us have to deal with the judgement that a lack of knowledge and understanding of autoimmune diseases brings into our lives? You know the saying, “But you don’t look sick.” Or the idea that we are not willing ourselves to wellness hard enough. (I’ve tried to kick my own butt to get my body to behave! But currently it is still misbehaving.) But some people act as if you are dealing with an illness or a tragedy that they have the right to inspect your life and your faith.
My faith in His perfect plan for my life is what gets me through each day. It’s what keeps me going when the pain is at it’s worst. He is the One I can come crying and complaining to without fear of judgement and receive peace and comfort in return. And this disease has brought me closer to Him. But as a result of what’s going on with my body, I’ve had close friends evaluate not only my faith, but my life.
What also troubles me is that when someone judges one’s situation in life in relation to their faith, they are ultimately judging the will of God as well. I might be in the situation I’m in physically for a million different reasons according to His plan. But He hasn’t forgotten about me. He knows exactly what is going on with my body every second of the day. He is the only One who knows exactly how I feel and why I am feeling the way I do. And He has a plan for my life that is outside the realm of anything I could dream or imagine. And if someone questions why I haven’t been healed, they are in essence questioning God’s will and purpose for me.
I think we all struggle with judging each other in one form or another. I know I do. It’s our sinful, human nature. We just have to be careful how it can impact our relationships, even when we might be well meaning.
Here are a few other comments I think only the person suffering should be allowed to say:
1. It is part of God’s plan/purpose for your life.
2. He is using it to make you stronger.
3. God is going to use this for good someday.
4. I know how you feel. My so and so is a Christian and has (fill in the blank).
5. At least it’s not as bad as (fill in the blank). (Err, um, a terminal illness?!)
6. At least you’ll get a new body in heaven one day.
7. You can use your experience to minister to someone else.
Although many of these statements are true, and are often said with good intentions, they belittle what a person is going through. I’ve often struggled with what to say to those who have been diagnosed with a disease, lost a loved one, lost a job, experienced a tragic accident, etc. I’ve often been at a loss and have probably said the wrong things at times. No, scratch that. I’m sure I’ve said the wrong things at the wrong times.
I’ve since concluded though that usually the best thing to say is simply, “I’m so sorry.” And then just listen. People usually like to talk about what they are experiencing if your heart is in the right place and you simply listen.
Rejoice with those who rejoice; mourn with those who mourn. -Romans 12:15 (NIV)
I just returned from the dermatologist. She looked at my nails and said they were not a definitive indicator of psoriasis. She said what’s happening to them could be a reaction to anything going on in my body. Hmmm, that’s helpful. She said, “It’s a lot like the rash you had on your breasts and trunk that could have been a reaction to many different things, even something like breast cancer.” Really? Did you have to throw that in there?
And then I mentioned that I was starting to experience changes somewhere else. (And now, you are about to realize that I am sharing what is going on with me not just for my own sake-but to hopefully help others.) I mentioned that I was experiencing this in a private area. Ah, the joys of autoimmunity just keep getting better, folks. Lucky me got to undress and have those areas examined. Glad my dermatologist is a female. It wouldn’t have happened otherwise.
And that’s when she said, “Well, now I think you are correct. It does look like you have psoriatic arthritis.” (That will be a few hundred dollars.) But wait, it gets better. Then she said, “But just to be 100% sure, I’d like to do a biopsy.” Really? First it was my breast she biopsied–which came back inconclusive. Now, it’s my behind. So, this little mama has stitches in her rear right now. How’s that for a little transparency?
She told me to come back in twelve days to have the stitches removed. I reminded her that the stitches in my breast came undone the day after they were put in and I had a bleeding, gaping cut that I tended to with steri strips. Couldn’t I just take the stitches out myself? She pointed out that it might be difficult since they are behind me. Oh, yeah, duh. Well, then my husband can take them out. There, problem solved and follow-up appointment avoided.
“You know,” my derm. said, “There is no cure for psoriatic arthritis. You will have to manage this the rest of your life. You should really start a biologic.” I told her that I would like to finish my attempt with antibiotics. She squished up her face and said, “But antibiotics aren’t a treatment for psoriatic arthritis.” Uh, thanks. I’ll take it from here. She also asked me (sounding very surprised) why I wouldn’t want to start a biologic right away. This question put me off a little. She said it like there are not side effects to biologics.
As I was walking to the desk to check out, I was caught off guard by the feeling of tears welling up in my eyes. When I got home, I couldn’t help but cry. I think that I had to process being told once again by someone in the medical profession that what I have is without a cure and lifelong. I knew this going in to my appointment and wasn’t told anything new by the time I left. But for some reason, there were tears. And now I’m sitting here a bit more collected, but with a bandaid on my behind!
I’ve been walking around as seronegative RA girl for over a year now because my symptoms present very much like RA and that’s what doctors have told me I have. I can’t explain it, but I have never felt a peace in my spirit about this diagnosis. The fact that my blood work has never shown a blip of anything hasn’t helped the situation. As a result of sharing this with people, some have said I must be in denial as a result of not accepting the diagnosis, others have written off the true nature of my illness and have assumed it must just be stress, or not dealing with my past or not willing myself to wellness hard enough. (I’m over it now. But it sure did hurt at first.) I mention this because it amplified my need to reach out to others in pain. I felt such a need to connect with people dealing with similar symptoms. People who know the struggles that come mentally, physically and spiritually when your body starts to fail you. And so, I went with the RA label because I needed a direction. At least I had a label, right? I know that many of you have gone years without even receiving a diagnosis of any kind. And I’m so glad I did. Because connecting with others has been incredible. My fellow sufferers get it, thank God. And they are supportive, non-judgemental and compassionate.
Like many of you, I am often digging for more information online and reading the latest studies. I just recently learned more about an arthritic disease I had never heard of before while doing research before bed one night–psoriatic arthritis. I was led to look into this particular disease by someone on the Road Back bulletin board mentioning it in an answer to one of my posts. Thanks, Maz! You are an angel. She said that many times people diagnosed with seronegative RA find out later that what they had really been dealing with was either reactive arthritis or psoriatic arthritis.
I nearly jumped out of bed when I read the symptom list for psoriatic arthritis the night I was researching. You might as well have put my name at the top. And it said that often times nothing shows up in a person’s blood work. Hello! And sausage toes are classic–oh, HELLO! I’ve always referred to my attacked toes as sausage toes. I knew immediately that psoriatic arthritis is what I have been dealing with all along. It just eluded an accurate diagnosis due to the fact that I’ve never presented with psoriasis of the skin. I felt certain that this must be the correct diagnosis in light of a recent and lovely new symptom of mine. It sealed the deal in regard to the diagnosis for me. This new piece of the puzzle has caused all of my once thought to be random symptoms (back and neck pain, hip and ankle tendon pain) to connect like a puzzle under the symptom list for psoriatic arthritis (PsA). My new symptom is psoriasis occurring under my nail beds–toes and fingers. And it’s become quite unsightly. Yipee. I can cover my unsightly toes with polish. But I’m not the fingernail polish wearing type. I have four boys. I couldn’t possibly keep up with pretty polish on my fingernails if I tried.
Needless to say, I didn’t sleep well the night of my discovery. I wanted to wake up my husband and say, “Baby, I know what it is now!” I couldn’t believe what I saw when I began searching for pictures of psoriasis of the nail. The photos looked just like my toe nails. The situation with my toes has been ongoing for about a year and for the longest time only involved my two big toes. I never thought much of it because I thought it was a fungal issue that wouldn’t resolve itself with over the counter treatments. I did finally mention it to my rheumatologist two appointments ago because when I took the polish off my toe nails recently, I was shocked to discover that several other toe nails had become discolored. And now my fingernails are involved. My fingernails became involved after beginning antibiotics. In just a few weeks, the appearance of my thumb nails has rapidly changed. Shall we have a look see at what is going on? I’ve included a photo of painted toes as well because it shows what the toes on my left foot looked like before I began AP. Once I began AP, I acquired a lovely new sausage toe on my left foot to match the beauties on my right. So sad…left foot always managed to visually stay out of the line of fire until now.
Here are the finger nails affected. You can also see the swelling of my left thumb compared with the right. This puppy was the first joint to ever swell up on me and cause pain. It’s the one that first put me in a rheumatologist’s office.
So, I’m actually psoriatic arthritis girl–or PsA girl. Seems like an open and shut case to me. And I have total peace about this diagnosis being the correct one. I presented my findings to my rheumatologist at my last appointment and he said that he agreed with me but wanted my nail situation confirmed by a dermatologist before coding my charts with the diagnosis since insurance would surely follow me with it for the rest of my days. I see my dermatologist on the 14th.
I don’t know how or why, but in all of my research, I don’t remember reading about this disease. Or maybe I breezed over it since I don’t have any red, raised patches of skin and thought surely that can’t be what I have. I’ve heard of psoriasis, sure. But psoriatic arthritis, no. The symptoms of RA and psoriatic arthritis are very similar, which is why I received the diagnosis I did.
On the one hand, it feels oddly wonderful to know that what is going on with me has a name and is happening to others all around the world. And having a peace about my diagnosis is priceless. But on the other hand, I’ve caught myself dealing almost all over again with the feelings associated with being told you have a chronic illness without a cause and without a cure. The fact that I now have another issue to deal with that is advancing very quickly–my nails–does not delight me. What’s next, my skin? My AP doc mentioned I might want to consider Enbrel at my last appointment in lieu of my recent nail activity. Not yet. But thanks for mentioning. For now, I will continue with the antibiotics. Doc is giving me six months on these particular antibiotics before I have to call it quits with them. Fortunately, there are also success stories of people with psoriatic arthritis seeing improvements. Thank God!
It’s important to me to note the symptoms of psoriatic arthritis in the event that it may help someone else. Here is what can be found at WebMD:
“Psoriatic arthritis frequently involves inflammation of the knees, ankles, and joints in the feet and hands. Usually, only a few joints are inflamed at a time. The inflamed joints become painful, swollen, hot, and red. Sometimes, joint inflammation in the fingers or toes can cause swelling of the entire digit, giving them the appearance of a sausage.
Joint stiffness is common and is typically worse early in the morning. Less commonly, psoriatic arthritis may involve many joints of the body in a symmetrical fashion, mimicking the pattern seen in rheumatoid arthritis.
Psoriatic arthritis can also cause inflammation of the spine (spondylitis) and the sacrum, causing pain and stiffness in the low back, buttocks, neck, and upper back. In about 50% of those with spondylitis, the genetic marker HLA-B27 can be found. In rare instances, psoriatic arthritis involves the small joints at the ends of the fingers. A very destructive form of arthritis, called “mutilans,” can cause rapid damage to the joints of the hands and feet and loss of their function. Fortunately, this form of arthritis is rare in patients with psoriatic arthritis.
Patients with psoriatic arthritis can also develop inflammation of the tendons (tendinitis) and around cartilage. Inflammation of the tendon behind the heel causes Achilles tendinitis, leading to pain with walking and climbing stairs. Inflammation of the chest wall and of the cartilage that links the ribs to the breastbone (sternum) can cause chest pain, as seen in costochondritis.
Yes. Psoriatic arthritis can cause inflammation in other organs, such as the eyes, lungs, and aorta. Inflammation in the colored portion of the eye (iris) causes iritis, a painful condition that can be aggravated by bright light.
Corticosteroids injected directly into the eyes of patients with iritis are sometimes necessary to decrease inflammation and prevent blindness. Inflammation in and around the lungs (pleuritis) causes chest pain, especially with deep breathing, as well as shortness of breath. Inflammation of the aorta (aortitis) can cause leakage of the aortic valves, leading to heart failure and shortness of breath.”
