Things that have helped me thus far...a very POSITIVE update!

Today is September 16, 2012 -- about 3 years and 8 months after my transplant. I write few and far between because I'm trying to live life to the fullest and don't always have a lot to say. Since my last post which was marking my 3-yr-anniversary I still battled fatigue, weakness and skin GVHD.

Recently, however, I've found some things that have really helped make a difference in how I feel, my healing and my outlook. I want to share them in order to update friends, family and followers as well as give hope to those who have gone through a bone marrow (stem cell) transplant or who are expecting to do so in the near future. If you haven't gone through one, but will be, you can re-visit this down the road as you have enough to deal with right now.

What I'm Dealing With and What Has Worked

Skin GVHD - Basically, it's the immune system thinking my skin (an organ) is foreign and it tries to reject it. There is dryness, peeling, red skin and some areas that separate where the skin folds come together (behind the ears, the nose folds, etc.) I've grown to tolerate this as I try to come down off my Cyclosporine. That's an immune suppressant that keeps it in check. The goal is to get off completely. The sun affects my skin and I'm supposed to stay out of it, but living in southern CA prevents complete avoidance. I try to remember to wear sunscreen, but forget to sometimes. I have one long-sleeved SPF shirt, but wear that only when I'll have to be outside for longer periods. A hat is necessary, and my prescription sunglasses make my eyes so happy. I can't believe I went all these years without wearing any! Moisturizing my skin really helps. I just need to remember to do it almost constantly! I keep trying different brands and as soon as I have a tried and true favorite I'll post the results.

Fatigue  - This is a biggy. When I speak of fatigue, it is unlike anything you've ever experienced. It's an exhaustion that feels like an insurmountable wall and it affects your whole psyche. It makes you feel like you can't do anything and then you can easily get depressed, feeling less worthy or valuable than those who seem normal to you. Even 3 years later, this was hitting me hard! Could it be because I have two kids? I don't think so. Here's why: I have gotten to the bottom of it and have found some things that have really helped!

First, as you have read before I had adrenal insufficiency. Everyone who has been through trauma, and doesn't seem to be recovering from said trauma, should get tested for this. Mine was so bad that it was adrenal crisis sometimes, landing me in the ER often. My doctors told me that once the adrenal gland is shriveled up, it can't be restored. I have a God who does the impossible though, so I did not think like that. Instead, I prayed. I also take the hydrocortisone at the lowest levels I can without feeling wiped out. In recent tests, it shows that the adrenals and pituitary glands are "waking up" -- great news!  So I continue on my hyrdocortisone and try to wean off slowly and I thank God for healing me in his timing.

Another factor that has helped was a lifestyle change--specifically, my diet. I had been eating whatever I want whenever I want post-transplant because I didn't want to "suffer" anymore. I had so much damage to my mouth and digestive tract that I had to eat whatever I could taste. That was cheese! Since I needed to gain weight too, I threw caution to the wind. Well, I gained all the weight I needed and then some. Once I got into that mode, it was hard to stop it. I became quite the food addict. Later, when I'd had enough, I tried to eat less or count calories, but that wasn't working for me. Then I read the book Eat to Live by Dr. Joel Fuhrman. He promotes a plant-based diet based on his extensive research and I am inclined to agree with his findings. I changed over to a plant-based diet and that's helped me feel a ton better. Dairy is a real problem for people like us and I have a lot more energy since getting off and eating a lot more fruits and vegetables, nuts, seeds and beans - lots of beans!  The fiber in this way of eating keep me feeling full longer, gives me more energy and the protein is easier to digest. If you have digestive problems, I highly recommend a plant-based diet and that book. As a bonus, I've lost 17 lbs since starting this in July and look forward to losing all of my extra weight.

Another modality that I'm finding to be a lifesaver is getting B-12 injections. My doctor recommended them to see how they'd make me feel since even people eating meat are often found to be deficient in Vitamin B-12 because of modern farming practices. The meat most people eat lack the bacteria that creates B-12. Apparently 30-40% of all people (not just vegetarians) are B-12-deficient! Well, he was right. I feel a lot more energy since starting them. I give them to myself with the prescription he gave me for the liquid vitamin and the syringes. It's super easy to give it to yourself in the upper thigh. The doctor started me on three injections three times a week to get me caught up and then once a week. The good thing is you can't 'overdose' on B-12.

In addition to the B-12, my doctor also recommended IV vitamins followed by 1-hour in a hyperbaric chamber with oxygen twice a week. The idea is that it will help circulation get to the tissue that's not getting it and healing will take place, damaged nerves restored, numbness improving, and more. Since we had over-estimated our pre-tax healthcare dollars I figured now was the time to try it. If we don't use all our money, we'll lose it. I'm thankful because without that over-estimating 'mistake' I'd have never tried this complementary therapy out of expense which is $100/hour.

I've done three sessions now and noticed improvement in my toes and feet on the first visit! It is working and I've noticed more feeling and my lower extremities feel stronger. This is so amazing to me and I'm very hopeful that it will be restored.

I take the IV vitamins as a way to bind toxins that are being released and flushed out of my system. Not sure how to quantify that experience except that again, I have a lot more energy lately and even though I felt like I was battling a garden variety cold, it never 'took' - yay for that!

Mobility and Strength - After muscle loss and nerve damage combined with the stress fractures from falling because of it, I was left me with a limp which you might only notice if you see me when I'm tired. I have felt weak in my ankles and feet ever since. Well, the hyperbaric chamber sessions have been helping with this IMMENSELY! I especially notice it now that I've started the Cancer Center's Well-Fit program through the Santa Barbara Athletic Club. Since I've started feeling my feet again, I feel so much stronger. The Well-Fit program is a 10-week cancer patient program to help those going through treatment to maintain their strength or those who have gone through treatment to restore their strength. It's an awesome program. We meet twice a week with a personal trainer in a small group and can enjoy the health club as a full-member for those 10 weeks. I started last week and have been going daily since. So far I've just been building up my cardio workouts and today I did a pilates class that was head-to-toe strengthening and stretching. The pilates felt fantastic and I felt so strong doing it. You'd never know I ever had the problems I've had. I waited these 3 years to do this program because I had to have enough strength and health to do it. Now I do and am only going to get stronger.

High Iron - Due to the number of transfusions I received over the course of my transplant, and the fact that the radiation put me into menopause (therefore no more bleeding), my iron stores are extremely high. That's no good for your veins, your heart, your brain, etc., so I have been getting phlebotomies, or donating blood that they throw away, to reduce the iron in my blood. I do it as often as I can without getting anemic. Once a week was too much. So now it's every three weeks and only that if my hemoglobin is above 12. Planning this through February. Next time I'm in for the hyperbaric chamber session, I'll ask my doctor if IV chelation therapy would help remove iron.  If so, that would prevent anemia.

What I'm able to do now

My kids schedule is rather busy for me, but with carpooling help and planning ahead, it's doable. It's hard to take on outside commitments other than what we've already got for church, school, sports and Boy Scouts, but we manage it well. I'm able to work out at a gym for 30 min. to an hour, garden a little, household chores for the most part, and shopping the farmer's markets for fresh organic produce. These don't seem like a big deal to you, but they aren't activities I could muster the strength for even a year ago. I also started canning, and do it in spurts and small batches when I have motivation, find a good deal on some kind of fruit or pepper and have time.

What I'd like to do, but still have trouble with

I still can't be in the sun, but I tried to go to the beach last weekend with the family. Even though I sun screened up, wore a hat, stayed under an umbrella and wore SPF bathing 'clothes' (I looked a little goofy), I still reacted to it in a way that made me realize it's not time to try that yet.

I'm still gaining strength and look forward to the day when I can run again, but that's really not possible at the moment. 

I look forward to having more stamina even though I am experiencing more energy lately. I look forward to the day my adrenals are normal and I can get off all medication. I look forward to the day when something 'different' or outside the normal routine doesn't throw my whole system out of whack from the stress of change. That's not my personality usually, but it's my body since the transplant.

I'd like to get rid of more of the excess that built up in my life during these years that got away from me, and welcome anybody who would like to help. Too much stuff! I used to have a regular routine of decluttering so it never got out of control, but of course, that wasn't happening over the past few years. With too much stuff I can't think as clearly and it drives me a little crazy. I just started selling things on Ebay and if you need anything, you can check out my sales -- search funds4recovery. I am getting rid of mostly books and curriculum, DVDs, household goods, home decor, some clothing, and who knows what.

I'd also love to travel, but find even trips longer than 2 hours difficult still. That might be different now that I'm feeling much better, but haven't tested it out yet because of the fact that change to my normal routine still sets me back at times. I'm enjoying feeling so good for a change in my normal environment!

Well, that's the latest from Lake "Woes-R-Gone", just kidding, I couldn't be more thrilled with the prospects for health and recovery and hope the Lord touches you, my reader, in a very special way in whatever way you need most. He knows your need and He cares for you intimately.

 “It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us.”

 “‘If you can’?” said Jesus. “Everything is possible for one who believes.”

 Immediately the boy’s father exclaimed, “I do believe; help me overcome my unbelief!”  ~Matthew 9:22-24

Big Update! Light at the End of the Tunnel!

I do realize that I never updated you after the NIH trip to Bethesda, MD.  It was such a rough recovery after coming home that I was just too sick to do so.  As it turns out my adrenals were shot and I had nothing to withstand the stress of travel.  So daily I laid on the couch moaning in stomach pain, and fighting nausea, many times vomiting and diarrhea.  After 2 months of this, I ended up in the ER and explained that I thought it was an adrenal crisis and to give me a hydro-cortisone shot which indeed helped stop the situation.  This after having had my stomach and colon scoped just to make sure this had not been a GVHD attack.  It wasn't.

Photo of me getting acupuncture at NIH in Bethesda.  First time :)  Since coming home I've had a very good acupuncturist work on me.  It's actually quite relaxing after the initial pokes!  A TIME magazine feature on chronic pain noted that the only effective alternative therapies for chronic pain were physical therapy, massage, acupuncture and yoga, and biofeedback, as well as two Chinese herbs that were found to be more effective than a rheumatoid arthritis medication. The names of the herbs elude me at the moment, but you can find more info at the link to the article.


So despite the hardship that was going to NIH, the resulting information and clarity was helpful in that they showed me what was and what wasn't GVHD in the body.  I have GVHD but limited to my skin and oral mucosa.  That is great news!   All the other stuff I've dealt with over the last 2 and a half years has been due to medication side effects and adrenal insufficiency.  Not so great, but something we can work with and hopefully overcome.


So ever since my birthday, I have felt like my old self which is really saying something since I just turned 40.  My energy is so much better and after some regular acupuncture and massage I have been regaining my muscle activity and sensations in my feet.  I started walking and am utilizing my former walk-to-run program which I invited everyone who wants to join me (we're just starting Week 3 now, but you can join anytime and start at Week 1)...I made a Facebook Page which has the schedule for the program and other tips and encouragements along the way:  Join my Walk-to-Run in 18 weeks group on Facebook  


The other great news is now that I'm feeling better, we're able to serve the Lord in new ways that I didn't think possible just a couple months ago.  Friends of ours from church, named Gentry and Luis Zuzunaga, are adopting a 3-year-old girl from Russia who has down syndrome.  They've fallen for this sweet, adorable child named Maria, and feel God is calling them to bring her home.  Since we cannot adopt at this time ourselves, we would love to do everything we can do live out the verse in James that says,  "Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world."

What better way to do that then to help out a 90-year-old woman with her home repair needs while raising money toward the $20,000 needed to bring Maria home.  Mike, Adam, Trevor and I plan to do just that.  We're teaming with the Zuzunaga Family and a ministry called Both Hands (one for the widow and one for the orphan).  Please consider sponsoring the English Family in our project to help Louise, a local 90-year-old woman who served the Lord many years as a missionary and who has many home repair needs to be attended to by our team.  The money raised will go to bring Maria home to the Zuzunaga Family.  To learn more about this project, about Louise, Maria and the Zuzunagas, as well as making a donation to support us visit: http://bothhandsfoundation.org/luis-and-gentry-zuzunaga.aspx  - Your prayers are very much appreciated!  

P.S. Some of you will be receiving a letter in the mail with our flyer and a section to cut off and send in if you'd like to support us in this ministry. If you want to support the Zuzunagas through us, but don't receive a letter, you can do it through the link above. It's all to bring Maria home and help Louise!