LIfe, Marriage, Parenting, Psoriasis, Uncategorized

7 Good Days- Coping with Psoriasis and Psoriatic Arthritis

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canes on the groundCoping with Psoriasis and Psoriatic Arthritis: My husband Jeff was 39 when it happened.  His bio meds started to fail after 3 years of good results.  We were Disney World in Florida the 1st time we went as a family, it was  December 2008. My husbands  arthritis came back with vengeance.   He was on Remicade at the time $3200 per bag of the Biologic Drug to keep the Psoriasis and Psoriatic Arthritis away- Thank god for insurance.  My husband limped through Disney as his joints and muscles ached from the arthritis.

When we got home Jeff went to the Doctor  they decided to up his Remicade and put the treatments closer together. So every 4 weeks Jeff would go for 8 viles of the Drug $5600.  The remicade stops his over active immune system to hopefully slow down the affects of  the arthritis.

At first the drug infusions would last 2 weeks.. then Jeff would suffer for 2 weeks, until he could get another infusion of the drug. During this period we would schedule our family plans during the 2 weeks  knowing  that Jeff would be mobile enough to participate in our family’s lives.

Then the drug only lasted 7 days..

7 good days to be a family not affect by arthritis.

7 good days..  he could spend time going to his kids events.

7 days of living..

….then the other 21 of pain.

Then April came  drug failed and my husband had a reaction and could no longer get a remicade.  He went in to severe allergic reaction while getting his infusion , oxygen was required.

The 7 good days were lost

Jeff was at the end of the arthritis drug list.  He taken everything the doctors had available and built up immunities to all the current drugs.

He was 39.

The true darkness set in.  My husband went in full arthritis mode.  The “dark days”  or months as I like to call them.   Jeff’s arthritis got so bad he could barely walk.  His feet became huge,  he wore slippers 2 sizes to big,  he could not close his hands,and  Jeff could not climb stairs.  His inflammation levels were off the charts.

Jeff dragged himself to work everyday.. which is why I think,  people believed he was ok. The reason Jeff worked, he was paranoid about loosing health insurance.  At no point during “the dark days”  were things ok.. he would parking Handicap (he had a tag at this point) drag his body to the door with a cane, ride the elevator up and sit at his desk all day.  His co-workers assisting and picking everything up from him at his desk.  They watched him suffer too, his smiling personality gone.

Another reason he worked besides the insurance?  Jeff thought he was too young to stop working and go on disability. He wanted to contribute somehow,  he needed a reason to continue,  and providing for us was it … he wanted to live somehow.

Jeff no longer slept in our bed or tuck in his kids since he could not do stairs.

Jeff asked that he no longer drive or watch the kids.  The reason was he could not help or react if something went wrong, he could not save his own children.

He lost 50 pounds because it he could not cut his food and  hurt to eat,  the arthritis was every where.

The cane was in full use to assist him so he did not fall and the walker was ready to go when he needed  it..

He was 39

Arthritis Affects on our Family:

During that time  I was trying to keep everything “normal”.  I went to hockey practice, dance, worked, and more.   I made dinner every night, cleaned,  did everything.  Including taking care of Jeff.   He need help dressing, showering, and in the bathroom.   I did it all like it was ok, Me ..I normally speak up if I am unhappy,  during this time I existed  never saying a word about how terrible it really was, feeling as people never really got it.  I was dieing inside watching him suffer.

During this period as Jeff’s arthritic caregiver  I questioned everything:   My marriage, my family, my friends, our home, and beliefs.

While Jeff was at work ..I would cry and cry, not want him to see the tears.  I hated the feeling I was having 38 years old destine to be a caregiver for this arthritic man with no end in site.  I gained weight 298lb, stopped taking care of myself,  and existed as a mother. I was also diagnosed with diabetes.. the doctor told me with the stress it could have made me flip the switch from borderline to full Diabetes.  It also explained the depression.  Then the guilt of I am not suffering like him.. so it was not ok to feel sad.

My son age 8 at the time .. who was always close to his father felt pushed away he wanted thing to go back to normal.  He wondered if he would get this .. what Daddy had.  He acted up in school and was good at home to not upset is fragile dad and crumbling mother.   He grew up so fast during this time,  he became more responsible.  That is not the way you want your child to be come responsible  because he has to.   His only wish to go camping and fish with his father..

Jeff saying  “Buddy I cant do it.. I cant walk through the woods”

My heart died a little at the little boys request.

My daughter 3 at the time,  begged to sit on her dads lap , but she could not.   Jeff’s arthritis  set into his rib cage, where the tendons meets the bones,  which also made it hard to breath.  His arthritis was in all his tendons making it difficult to be touched.  I watch as Jeff was crushed telling his little girl she could not sit on his lap.

Hope:

One Sunday in June  after 6 months,  I cracked emotional  at church someone asked me how was Jeff, I lost it, Crying in the hall in front of everyone.  I told the truth.. he was not having anymore 7 good days. We were existing.. I was worried about him, our kids, and I was sad.  The people at church stepped up .. they brought meals to us for 2 months.. hope and happiness returned to our lives.

We started seeing  many of the best doctors in the area,  finally a doctor gave him a newly approved  drug.  It took 6 months to work but Jeff got back in to remission.  He has a better diet, reducing stress, and tries to work out. All which help.

Here is the thing it will be back,  I am realistic.  it scares me terrible to go back to those days.. Arthritis always comes back.   It is a good chance my children will get it also.  We need the Arthritis foundation and researchers  to continue to discover relief and cures.   We need more research and more drugs .. because he is only 42 and He has to walk his daughter down the aisle in 20 years..

World Arthritis Day is Tomorrow October 12, 2012. Please help if you can and raise awareness.

 

 

47 thoughts on “7 Good Days- Coping with Psoriasis and Psoriatic Arthritis”

  2. Ah Sherrie, this is heartbreaking 🙁 I’ll pray for your family. Have you looked at more hard core biomed/naturopath treatments for inflammation? (Leaky gut, metal toxicity, probiotics, omega-3, remove inflammatory agents, and all that stuff I read about daily 🙂

    1. Gina, we have done some questionable stuff through the years.. I wrote a post about it. Omega 3 yes.. i will ask him about the metal stuff. He has been on alot of the cancer drugs methotrexate (sp) . embrel, humira, orencia, stelara, remacde. he has done the chiropractor, herblist, healing juices, and other doctors. He has tried some odd things too. He is off red meat and He is going to give up gluten next.

      1. Oh gosh. I know the cancer drugs are hardcore, but what can you do? Good luck, I truly hope you find answers!! (And if you need to commiserate how frustrating it is when you can’t, I hear ya…)

  3. Here I was feeling bad for myself for just getting diagnosed with arthritis in my knee at 34, I can’t even imagine everything you guys are dealing with. My prayers are with you guys. Even in your dark spaces, kudos for taking such good care of Jeff and the kids.

  4. Oh I am sending hugs, love and thanks for sharing. This could not have been easy. I know my sister, who has psoriatic arthritis too, has such awful flare ups at times. She is finally weaning off prednisone and taking embrel and a few other meds. I pray for a cure for your husband, my sister and everyone else!

    1. Thanks for your comment Sarah. It was not an easy post for me to write, it was 3 years ago when it happened but still a very raw time in my life because, we are always worried it will happen again. His skin and the Psoriasis is bad right now, so people stare. Which is a predecessor of the bad arthritis. I just want him to have a easy time. I will let you know he has a really bad case of the psoriasis and psoratic arthritis so your sister might not be like him. I hope your sister stays in remission, and if she ever want to talk about I am sure my husband would talk to her.

  5. This breaks my heart to read. I am so so sorry for you guys. I have rheumatoid arthritis and I use the same term (dark days) to describe the bad ones. Right now I’m not on anything and am doing ok, but I am waiting for a dark day to sneak up on me and plunge me back into that horrible existence.

    I pray they find a cure. Soon. For all of us. *hugs*

  6. I want to say something to your husband, I know he is not there now, but please pass this on:
    You are a great man for continuing to provide for your family, and even if you can’t make it to the car at one point, you will always be a leader and a mentor. A hard, moral stone does not need to preform intricate tasks, it just needs to provide support.

    And don’t forget to tell your wife she is beautiful, every night.

    1. Thank you for the supportive words. I will show/read him your comment tonight. He read my post last night.

      I did share our story with his consent. He actually told me to write it sometime ago. He feels it is our duty to speak up about Psoriasis and Psoriatic Arthritis because so many people are embarrassed about their skin and the affect of condition. He has always felt the confidence because he has never been able to hide his aliments skin and arthritis.

  8. Oh, Sherry! Hugs! I know how hard it can be to have a family member dealing with a disease and my story is nowhere near as tough as yours. You are a truly amazing woman, and I am so happy that I met you through PSMM.

    You will be in my prayers.

  9. my heart just broke for you Sherry. We all know how it hard it is to see our kids with a cold or boo-boo but I can’t imagine watching my spouse struggle and ache so much. I’m so happy you’ve found some help and I hope it continues.

  10. Wow! Your story touched my heart, I never realized how my husband or my kids felt about my condition. I will post my story at a later date and I too feel guilty for my family having to deal with the things I can’t do. I have chronic low back pain and it got to the point that I couldn’t do my job any more. I got laid off a little over two weeks ago and have been out since July 4th. I felt that I was too young to try to file for disability but at the rate things are going it is my only option until I can find a way to make income online or from home working when I am able too.

    1. Christy.. I take care of my husband because I adore him and can’t image my life without him we are truly soul mates. I am sure that your husband feels the same. I think when a family goes though an illness it shows you the stuff you are made of. That is the part of illness ..survival because it shows you what is truly important. I would have not changed the lessons I learned from this time, it gives us perspective when we have other problems. Please don’t feel guilty about your illness, because it is part of you, that you cant change. Your illness it will teach you kids compassion and show them what real relationship love is supporting each other. Your family loves you.. just cherish the good days.. because that is what the kids will remember. Feel better- Hugs.

  11. I think I have always thought about arthritis as an “older person” disease. Not realizing it effects younger people all the time. Your story brought tears to my eyes. I am so happy that there is a treatment that put this into remission. I hope it stays there.

    1. Thanks Steph for reading it. People don’t realize how many you people arthritis affects. I appreciate you leave kinds words.

  12. Dear Sherry,

    Thank you for sharing your story! I was diagnosed with Fibromyalgia in my 30s and I relate so much to what you wrote. You and your family are in my prayers.

    I just tweeted your story to my readers and I would love for you to share this at my weekly Inspire Me Monday party (the new link opens Sunday evening) at

    Create With Joy
    http://create-with-joy.com

    Have a blessed week!

  15. Thank you so much for sharing, I know that had to be hard to get out in words. I am not going to pretend to understand what you have gone through but I do undertand the frustration of not having your body work the way it should. I became a paraplegic at the age of 15. It has now been twenty-six years and there are good days and bad. I am just so thankful that you have stuck together as a family and to your faith. What a wonderful example to the world and to your children. My prayers and thoughts are with you and your family as you continue to travel down this difficult road.

  16. That was such a hard story to read, but I am glad you wrote it. I do hope all the days ahead are better for your husband and all of you. I have arthritis in my spine which limits a lot I don’t do anymore. My dad and sister have it in their hips and spine too. Praying for a cure! And better treatments!

  17. My heart breaks for you all. I say my prays all the time that a cure is found quickly. I love you all.

  18. Sherry…you know part of the reason you and I hit it off so quickly way back in our little networking group was because I suffered with Rheumatoid Arthritis since I was a child and had been with my husband (soon-to-be-ex now) since high school & I understand primarily through talking with significant others (like you) with sick spouses (like me), what it meant for a spouse to be so sick, to not get out of bed some days, to long for remission and then only to be ripped out of it with no yellow light. I also read books written by the spouses married to people like Jeff & myself. It’s just as hard on you as it is him & me. Yes, we suffer with the pain, the emotional and mental pain as well….but you suffer with the emotional and mental pain and you have to be the rock…you signed up for a joint rock, not a solo one…that’s a lot for one person to carry on those shoulders, not to mention the loneliness of being so strong for you sick spouse and children. After all, we are sick…you feel selfish for complaining and allowing yourself to be mad, sad….basically mourn the past life you had with the love of your life and the family you created together.

    It’s okay to mourn that life Sherry, actually it’s the next step…which I can see you are already embracing the stages of grieving just with this blog post. Keep them coming. Some days you’ll be mad and that is okay to share as well because you are keeping it real allows for those of us that are sick to see how our disease affects our loved ones, so we can show more compassion for them. It’s so easy for those of us with a disease and pain to be self absorbed, especially when we have hit rock bottom with our health, which usually means for us we are at rock bottom for emotional health as well. It’s funny, my November article is on compassion and how having compassion for others will set you free. Once there’s empathy and feelings of sadness for another human being its so much easier to see that their behavior is just a reflection of their own inner torture verses a way to make them feel better (which so many of us assume). By you being so raw with your emotions you are encouraging others to, if not speak up too, at the least think…think and relate to you and Jeff and know its a process to get to acceptance, compassion which leads to forgiveness which ultimately sets us free….leading to our own inner bliss regardless of any plight we suffer, any disease we are diagnosed with or any set back we encounter.

    I’m proud of you for telling your story. It’s an inspiration to me, a reminder to me of my family and friends that suffer with me, and it reminds me compassion allows me to forgive and forget those that have done me wrong because they are living in their own anguish if they were able to do me wrong…and that thought is enough to make me feel sad, have empathy for them and honestly show compassion for them.

    Thanks for sharing….I needed to read this right now!
    Light & Love
    Chrissy

    1. Thanks for reading and take the time to right such a beautiful comments. I hope you find relief from your illness and pain soon. My thoughts and prayers are with like always.
      Be well – Sherry

  19. Prayers and hugs!

    I was just catching up on my blog reading. I think of you all the time and wish we could have a Indy reunion. I’ll send you an email as we need to have lunch in Philly one of these days.

  21. I had no idea this disease could affect someone like this. My heart goes out to you and your family. I pray for strength and healing for your family as a whole. One day at a time, I help my Dad on a day to day basis. He has Pancreatic Cancer, he has a defibrillator for his very bad heart which was due to a silent heart attack which was caused from his untreated Diabetes. I love that man, but I wish he would have taken the doctors more seriously

  22. I want to applaud you for writing this post. I have psoriatic arthritis as well. When you are not in remission, it is truly dark days. That’s exactly how I describe my initial flare, the pain, the whirlwind of doctors and specialists and diagnoses– pushing, pushing, pushing through the darkness.

    I was 28.

    I’m doing much better, but I know it’ll come back. I’ve hidden flare ups before, only to realize it’s insane to not tell others what’s going on with me, to not say there’s something I cannot do right now. The way you describe your feelings and your husband’s mentality really resonate with me!

  23. Thank you for sharing your story. I’m glad your husband found a medication that works. I have arthritis myself and I know a little bit about what you guys went through and are going through. Hugs to you and everyone in your family 🙂

  24. Sorry to hear about your family’s struggle with arthritis. Very inspiring though to see you guys working through it and hoping you guys continue to do well with everything.

  25. I know how hard it is to be a caregiver (not arthritis though). That feeling that I must be strong because even though I am suffering as well, it is not the same suffering the other person has to endure. I understand the weight gain, depression, and all as well.

    I’m glad you all are enjoying some good times right now. Now is the time to really take care of you too! I hope they find a cure for him soon. By the way my mom has RA also and we are very slowly seeing it impacting her.

    {{{HUGS}}}

  27. Thank you for sharing this, we so desperately need to find the cure for arthritis. I was 22when I was diagnosed with rheumatoid arthritis and I am 38 and still too young for this but you must keep pushing yourself. I hope your husband stays in remission and has nothing but time for family.

  28. Wow. Thanks for sharing this. I have a family member that is affected by this but didn’t really know how life changing it is. I hope that the research continues and that relief comes soon.

  29. One of my closest friends deals with RA (only 40yo too) and has days that it are so terrible that she can barely move. Anything I can do to help her, I do. Arthritis is no joke…

  30. Wow I can’t even imagine! I know in the back of your mind you just wonder when it may strike again. My thoughts are with you.

  32. Why is it that no one has mentioned BONE BROTHS? This is known to reverse autoimmune diseases, “when priority is given to the healing of the GI tract and of “leaky gut” syndrome (in which incompletely broken down proteins cross the mucosal barrier and enter the bloodstream and tissues only to be attacked by the immune system).”
    It is the gelatin from homemade bone broths that heals these diseases. It is healing my maladies (also reducing cellulite, which it is known for, YEAH MAMA)! Do not ever buy it packaged, make it yourself. Only use toxic & lead free cookware. It only costs $2 or less for a whole stock (maybe a weeks worth). I have endless information regarding this issue of joints & bone broths. Email me if you would like me to send you the sites that will help you.
    If I could recommend anything to you, read Nourishing Traditions by Sally Fallon.
    http://www.townsendletter.com/FebMarch2005/broth0205.htm
    http://www.westonaprice.org/food-features/broth-is-beautiful
    http://nourishedkitchen.com/bone-broths-adrenals-bones-teeth/

  33. Oh…I can relate so well to your life. And at such a young age.

    My husband is 21 years older than me and it is so sad seeing every day another symptom of another illness. I had been ill with an autoimmune disorder almost immediately after my wedding more than 20 years ago. Lots of doctors appointments and he never complained once.

    Now it’s my turn to take care of him and I feel happy that I can help now. The hardest part is of seeing him in pain and sometimes I just get that total exhaustion.

    All my feelings for health for you and Jeff.
    I wish you all the best.
    Don’t forget to take care of yourself also.
    Tovah

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