Sally's Story

I want to share an email I received from my new CIDP friend, Sally. She and I have shared emails and she writes about her CIDP experience below. I was honored when Sally contacted me as she has not communicated with others with this disease. If you would like to send her an encouraging note, please email it to me HERE and I will forward it on to her. Just wanted to post this because the unlikeliest of us benefit when someone shares their story. A special thank you to Sally for allowing me to share this!

Again, CLICK HERE to send Sally a note.

With hope,
Kristen


In May of last year, I was suffering from a pulmonary disease that was later diagnosed by lung biopsy as Pulmonary Fibrosis, another rare disease. It's where the lung spontaneously starts scarring, which causes the lung tissue to get very stiff, and air can't pass through as it should. There is no real known cause, and, unfortunately, the only cure is lung transplant. That would be a long way off for me.... I went to Mayo Clinic, Jacksonville, Florida, for a regular appointment just prior to having the lung biopsy. I was complaining of weakness, numbness and tingling in my lower legs and feet, and forearms and hands.Pulmonology wanted to check it out before they did surgery, so they got me in to see a Mayo Neurologist that same day. Well, the docs did all kinds of nerve testing and a spinal tap, and pronounced me with Guillian-Barre. They then admitted me to the hospital (a brand new one at Mayo) and administered 5 days of IVIg. I have no idea what kind they were using. At any rate, I was CURED !!!, or so I thought. All the feeling came back into my hands and feet, and the tingling seemed to get better. I was instructed to be aware of the symptoms. and if they should come back, I was to contact Mayo again. Well, they did come back......about 6 weeks later I felt the tingly feeling in my hands again, so Mayo had me come back there for a 3 day dose of IVIg, which seemed to relive my symptoms. They discharged me on a "maintenance dose" of 3 days, once a month, to be done by home health because the local hospitals didn't have enough supply. I do know that home health was using GammaGuard. It did seem that just when it was about time for the infusion, I would have some return of symptoms, but not really significant, and it would always go away after treatment. Then I turned 65 (Ugh) in November and went on Medicare and a supplemental insurance policy. They would not pay for in home infusions, so I had to start going to our local hospital infusion center to get my treatments once a month. I have no idea what brand of IVIg they used, but I'm going to call today and see about getting copies of my records, which should show the brand name. None of my doctors have mentioned the Brand issue, and I find it very intriguing. Just last month, the treatment I had at the beginning of the month did not work, and I got no relief. In fact, I became weaker and weaker as the days went by. I returned to Mayo, and they felt I should try another infusion, since I had responded so well before, so that was accomplished within a few days. No response again....and great difficulty contacting my doctor at Mayo. I was so frustrated ! I've forgotten to tell you that I am on high doses of Prednisone for the Pulmonary Fibrosis, as well as the CIDP. I had a Pulmonary relapse in January, spent 5 days in hospital getting better, and was discharged on 60 mg Prednisone for 2 weeks, then 50 mg for 2 weeks, 40 mg for 2 weeks and now I'm on 30 mg. Will "step down" once more on Monday to 20 mg a day, and will stay on that dose for 6 months. My head looks and feels like a bowling ball, and I'm really having trouble with swelling. The weight gain is depressing for one who started out too heavy in the first place! I finally spoke with my doctor, and they have EMG testing scheduled for next Tuesday. He says that since the IVIg isn't working, there is nothing they can do for me if the testing doesn't show that I need further treatment. I asked about plasma-exchange and paraphrases, but he didn't even want to talk about it until I've had this testing done. I can't believe there's nothing they can do, and now that I know about the Brand issue and possibly having infusions more often, at least I can have a rebuttal for his "nothing they can do" statement. The worst symptom I have is extreme weakness in my knees, lower legs and feet. I have no feeling in the toes and the small ball right under my toes. I have no knee jerk reflex and no ankle reflex. I have a problem with balance, especially when turning around or turning to walk in a different direction. I do use a cane, and on bad days I use a rolling walker. I'm also on a long oxygen tube that can go throughout the house, so I must be very careful not to trip over that. I did have a fall yesterday.....onto soft carpet, Thank God! Just a little rug burn on my right knee and a couple bruises. It happened in our walk in closet when I tried to turn around to hang something on the rack. This is only the 2nd time I have fallen. My hands tingle a lot, and I've lost the dexterity in my fingers. Magazines slip out of my hands, and I drop things more often. I am currently doing Physical Therapy, but it's not going too well because I tire so easily. I feel like such a wimp....the exercises are not difficult, and I'm only up to 10 so far, but I just get so tired! (This is my second round of PT, and I requested it to try and keep my muscles in tone. I would like to go back to Pulmonary Therapy, but I can't walk on the treadmill right now (obviously). I'm going to start the Imuran when my husband gets home this weekend. (He's a retired physicist, who's following a life long dream of being a long distance truck driver......and he loves it!). I'm also to have an inhaled medication, Pentamidine, once a month the ward off the old PCP bug. I hope to be able to reduce the Prednisone even more one I get "settled" on the Imuran. Thank you for letting me "bend your ear". I probably should have put this on your blog page, but I've never done that before and not quite sure how to proceed. If you think it might help someone else, please feel free to cut and paste it there. Sincerely,Sally

I Am Tired

For the past few days I've been dealing with mindblowing exhaustion. It's not the exhaustion that comes from "doing" too much or running myself ragged, but rather the exhaustion that comes from CIDP. It's an inexplicable feeling, but one many can relate to. Exhaustion/severe fatigue is a symptom of many chronic illnesses. Mine tends to manifest itself more as weakness, but this month fatigue has reared it's ugly head.



I'm not talking about "I need to take a quick nap" type of exhaustion. I'm talking about "Crawl into a corner anywhere" type of exhaustion. Every step requires concentration and determination. Chewing becomes a nuisance and it's easier to skip meals. Driving kids to school is difficult because it's hard to hold down the pedals for an extended period of time. Walking becomes a planned event.



THAT'S the type of exhaustion I'm referring to. It's just the way things are. It's just a fact of life for me and for many others. So what can we do to live with this? The three suggestions below are just a few I'm going to focus on today.



Surviving exhaustion/fatigue:



1. Meditate on God's Word. Mt. 11:28-30 is already running through my mind this morning and will be the promise I focus on today.



2. Pray. I keep a constant conversation going with God on days like these (and many other days!). I talk to him about everything and listen for Him to talk to me.



3. Watch encouraging tv/movies. When I'm too weak to hold a book or the laptop, I turn on the tv and find an encouraging show to watch. Redbox is a great inexpensive way to keep movies on hand for days like this.



Please let me know if I can encourage you today. I would love to pray for you by name.

With Hope,

Kristen

It's A Girl Thing!

Last night, the leaders of It's A Girl Thing held a dinner for all their volunteers and speakers. It was awesome to be with such amazing women! It was a pleasure to finally meet Nancy Darnell face to face after numerous phone calls and emails. What a great woman of God!


If you haven't already got your ticket, you'll definitely want to be there! Teenage girls (high school and middle school), youth/student leaders and volunteers, mentors, and moms will be encouraged, informed, and uplifted. Ayeisha Woods and Jenny Broughton will be there! Wow!


There are many breakout sessions on Saturday to choose from. I'm leading a session entitled "Refreshing Hope: Uncovering Three Keys to Raising Teenage Daughters While Living With Chronic Illness". I would love to have you join me if you're in the area.


Check out http://www.itsagirlthingconference.org/



With HOPE,
Kristen

Crawling into my cave

Without going into the gorey details, my church life has recently changed dramatically and it has been extremely painful. I've shared before how I tend to withdraw when I'm going through a difficult patch and this time is no different. I find myself not answering phone calls, saying "No thanks" to lunch invites, and basically crawling into my cave. Call it hibernating, pouting, or self-preservation. The fact remains, this is my natural tendency.

I've tried not do that this time and have done fairly well. I have my moments, though and today was one of those moments. Our small group meets on Wednesday nights. It's just a group of us who've been friends for years and our families get together for uplifting, encouraging Bible study.

Today, I didn't want to go. I just wanted to hide from the uncertainty, the pain, and just do my own thing. Luckily, my friends didn't let me off the hook that easily and my family and I went after all. I was quiet through the entire meeting because I was fighting back tears. Tears of anger, betrayal, grief...but more than that...tears of thankfulness. I'm thankful for TRUE community and family. I'm thankful for the love of family that exists based on our shared belief in Jesus and that has grown through living our lives together. I was overwhelmingly uplifted and encouraged just by being there.

The same can be true in dealing with chronic illness. It's extremely important to stay connected. Isolation can be devastating and lead to depression in some cases. Staying connected to friends, family, even online friends can be a tremendous blessing. I encourage you to reach out even when you don't "feel like it". Pick up the phone, say "yes" to lunch invitations, even email or visit forums or health blogs. Even if it means stepping out of your comfort zone, don't allow isolation creep into your life with chronic illness.

I'd love to hear what's worked for you and how you've stayed connected to others. Email me (kristenreyna at gmail dot com) or leave me a comment.

With HOPE,
Kristen

Put on a happy face

Well girls...this is one of those days.

A day when I know I've got to suck it up, put on my big girl panties and put on a happy face. I can take charge of my own life and choose joy or I can wallow in self pity.

Today, I choose joy! What about you? Are you going to allow your symptoms, your financial situation, or even the rest of the world determine your attitude today?

Suck it up, put on your big girl panties and your happy face. I'm not saying that's easy to do because it's not. "Easy" would be wallowing in self pity today. If you find you can't do it alone today, email me and we can find strength together.

Don't fake it, but make the choice to find joy this morning!

With hope,
Kristen

What A Weekend!

Welcome to my new Dallas and Plano friends! I was honored to spend time with you this weekend and so encouraged by you!

I was blessed to participate in a Women's Conference last weekend held in Dallas and Plano and it was fantastic! I met so many new friends and was tremendously blessed! I hope to have pictures up soon, so be sure to check back.

I led two breakout sessions, gave a talk in the main arena, and did two of my original dramas as well as shared songs. I was tremendously encouraged by the hearts of my new friends and amazed at how God brings us together through events like this one.

MacKenzie, you've been on my heart since Saturday. I'm praying for you. Your courage and your faith in God is inspiring. Hope to hear from you!

To those who shared their personal stories of illness with me, I'm truly blessed and honored you would share such intimate experiences with me. I would love to hear how things are going for you. Leave me a comment or send me an email anytime! It became even clearer to me this weekend to continue sharing about my illness and the HOPE I've found.

God is good and he never leaves us without refreshing hope. Embrace the hope that comes only from HIM and let's walk together on this journey!

With HOPE,
Kristen

Need Your Help

I'm busy preparing for Refreshing Hope which begins next Monday. It's a motivational, inspirational class for women living with chronic illness. I can't wait to get started and next Monday will be our first meeting.

That's where YOU come in! If you live with a chronic illness, please consider leaving a comment for me in answer to the following question:

What is the ONE thing you do for yourself that makes living with chronic illness just a bit easier?

Now I'm not saying anything makes living with illness EASY, but what is it you do for yourself that takes the edge off just a bit? I have never been much for pampering myself, but after living with CIDP for many years, having a pedicure is something I do for myself that makes life easier for me. It's a treat and it's a healthy thing for me.

Now it's your turn!

What is the ONE thing you do for yourself that makes living with chronic illness easier?

With HOPE,
Kristen