Friday - Last Day at the Mayo Clinic

Hello there,
Well our morning started out super early. We had to catch the 7am shuttle to the clinic and be at my appointment by 7:30am. It was the adrenal test and basically what they did was start an IV and shoot a hormone through to make my adrenal glands respond. And then they took blood every 30 minutes to evaluate how I was responding. I was quite nauseous. It it tasted like silver in my mouth. Very wierd. After that test, we went and got some coffee and then wandered around. It was only 10am but my next appointment was at 1pm. Not really enough time to do anything or go anywhere, but we did have lunch and spent some time in the medical library reading up on stuff we were told so far.

Finally it was time for the last appointment with Dr. Krotzer. He was the first doctor I saw upon arrival and the last doctor I saw upon departure. Such a great doctor and a good listener and very thorough. Final diagnoses is Fibromyalgia, Chronic Fatigue Syndrome, with vasculitis and Brittle type 1 Diabetes. But it is good news because these are all diseases within my control to take charge of. The Mayo Clinic recognizes both Chronic Fatigue and Fibromyalgia as legitimate chronic illnesses. The symptoms for Chronic Fatigue are the following:
ain symptoms:

• Fatigue or tiredness, never experienced to this extent before (new onset), lasting at least 6 months and not relieved by bed rest
• Fatigue that is severe enough to restrict activity (serious fatigue develops with less than one-half of the exertion compared with before the illness)

Other symptoms:

• Fatigue lasting more than 24 hours after an amount of exercise that would normally be easily tolerated
• Feeling unrefreshed after sleeping an adequate amount of time
• Forgetfulness or other similar symptoms including difficulty concentrating, confusion, or irritability
• Headaches, different from previous headaches in quality, severity, or pattern
• Joint pain, often moving from joint to joint (migratory arthralgias), without joint swelling or redness
• Lymph node tenderness in the neck or armpit
• Mild fever (101 degrees F or less)
• Muscle aches (myalgias)
• Muscle weakness, all over or multiple locations, not explained by any known disorder

The symptoms for Fibromylagia are the following:

Definition

By Mayo Clinic staff

CLICK TO ENLARGE

Tender points

You hurt all over, and you frequently feel exhausted. Even after numerous tests, your doctor can't find anything specifically wrong with you. If this sounds familiar, you may have fibromyalgia.

Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.

Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.

Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day.

Widespread pain and tender points
The pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.

Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:

• Back of the head
• Between shoulder blades
• Top of shoulders
• Front sides of neck
• Upper chest
• Outer elbows
• Upper hips
• Sides of hips
• Inner knees

Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea.

Co-existing conditions
Many people who have fibromyalgia also may have:

• Chronic fatigue syndrome
• Depression
• Endometriosis
• Headaches
• Osteoarthritis
• Post-traumatic stress disorder
• Restless legs syndrome

So there is me in a nutshell. I think after reading some of the brochures and books in the library people that are a type A personality tend to get this more then any other personality type. It is a disease that crosses all ethnic barriers. And usually flares pretty bad after a highly stressful event which as most of you know, I have had more then my share of this year. But now I have a plan of action and that is good. I have hope for the future. And that is good. I am off all the old drugs I needed to be off of. I have a few new ones and I am ready to face the world again. I will have to leave myself notes and train others to do so for me. Forgetfulness is a real symptom of fibromyalgia. It's called "fibro fog". I am not losing my mind, thank God. With God's help, some good nutrition, a good sleep pattern, and a good Spokane doctor I have a hope for the future. I am not going to die. I am not going to end up in a wheelchair. I am not going to have hands deformed by arthritis. Praise the Lord. In all the tests, blood tests, x-rays, etc. There was no sign of lupus, arthritis, MS, Parkinson's disease or anything else. I will need to learn to set boundries and realize that my energy comes at a cost. So if I want to spend a day at the lake, I will more then likely pay for it for the next three days. I need to remember that I am not superwomen and I do have limits. I can't always say yes I will do that. Sometimes it just has to be a no. Instead of cleaning my house once a week, I will need to break it up into 20 minute sessions 2 times a day. I will need to eat a better diet and take some good supplements that the doctor has given me. I will need to get some profession therapy because I am locked into "people pleaser" mode and need to learn how to relax and have ways to say no and set limits. Not only for myself, but boundaries for others. After all that I am hoping to at least get some massage therapy out of all this. Giggle..but serious.
We fly home tomorrow. Our good friend Brian is coming to pick us up and take us to the airport. We should be home by around 5pm. I miss my kids so much. I am so excited to see them.
I don't think I will be able to blog tomorrow. But I do plan on starting a new blog on living with and coping with these chronic conditions. As I learn, I will share and I think it will be a new adventure in my life as I move forward. Thank you friends and readers that followed along on this journey. It was well worth the biopsys, stiches, blood draws, adrenal tests, etc. I have the answers I was seeking and new way of life. I am excited to start living it. God bless you all. Thanks for your prayers and continued support. Love Becca

Thursday, January 14, 2010

I have been thinking all day about what I wanted to blog about tonight. Every night before bed, I have been writing a blog about my experiences here in Arizona. Though there were some reports from good doctors, and I had an excellent experience with the rhuematology department, I think I would like to have my final test done tomorrow and get a final result by tomorrow night to talk about.
So today's post will be about my companion that willingly gave up time away from her husband, her daughter, her son, their spouses and her grandkids. Karen has been a part of my life for over 12 years now. She was a good friend when I was still married to my first husband and even had helped me move over 3 different times. Karen and I were room mates at a Christian Conference back in 2003 and she took me under her wing. She has been a mentor, a friend, a person to go to for wisdom. Karen's daughter, Carrie and I are fast friends. About 3 years ago, Carrie started a Mom's Group and my friend Becky and I both were invited to join. Our mom's group is incredible and is still feeling the loss of our good friend Becky. Every summer Carrie, Karen, I, and our kids and husbands all go camping together each summer. For three days we play in the sun, or rain..lol. We cook together, our children play together and we play games and cards and just generally have a great time. So that is how Karen is in my life.
A couple of months ago, my husband decided that he wanted a desperation and I was a mess. I was suffering depression, sick with a sickness that I didn't know, I was taking pain killers like candy because I lost over 7 teeth, and was the middle of a terrible lawsuit. I had a dentist appointment and when I came out Karen was there waiting. We went for coffee and she had some things to say to me that while hard to heard, were truth and light to my soul and spirit. She then prayed with me and offered to meet with me once or twice a week to help me get through the troubled waters. Here at the clinic where I am ruled by pain, confusion, forgetfulness, and terrible sadness, she is there. She cook dinner, lunch, brings me breakfast every single morning. She sits in waiting rooms, doctors offices and clarifies anything I don't understand. She takes notes, remembers details, and makes me eat.
Every morning Karen is up before me. She is in the Word every single day. I watch her in awe. When I am upset by happenings, she guides my thoughts and keeps me on solid ground. When I want to vent, run away, yell or scream, she will let me. But she does not participate. She waits and then is there when I figure out that my response was pure emotion and nothing to do with God, but just about me and my frustrations that gets me no where. When I want to talk, she listens, when I want to complain, she doesn't. When I don't want to get up or move, she insists. She is a real pain in the neck..lol. She is the one that God choose to come on this journey with me. I am so proud to call her my friend and my mentor. She is a Godly woman and full of wisdom. She has given up a lot to be here with me and I am beyond appreciation. I can not find the words without crying to tell her how important this journey has been and how there is no way I could have done it without her. Sometime in the next few days we will be heading for home and I just want to give honor where honor is due. Karen, I love you and thank you.

Today, Wednesday

We had an early start this morning..very early. So tired and grumpy this morning and sore and woke up with a horrible headache. My first appointment check in was at 7:45 am and my appointment lasted for 2 hours. The doctor was so very kind and I really liked what he had to say and took it all to heart. He was an "alternative" doctor that treated the whole person and not just the physical part. He really helped me figure out what kind of supplements I was needing in my diet and I am iron, magnesium, vitamin D, and calcium deficient. So he suggested some great ways to improve nutrition, also he recommended some stress reducing techniques and recommended some counseling to deal with the abandonment issues I have, negative input from people that have not in anyway contributed to me getting here, Tony's separation and Becky's death. The fact that I am a person that feels like I have to be in control and dealing with this illness which I can not control and the things going on around me have really made my stress level rise to a point of making this illness worse and not better. I can not even get on Facebook without hearing criticism from some family member or other. It all goes back to "if you don't have anything nice to say..well don't say it". Anyways the doctor was awesome as he even printed me out some Bible scriptures to meditate on dealing with worry and about what others think of me and seeking approval from others when the only approval I need is from the Lord.

My next appointment was with the dermatologist. They did a skin biopsy on my arm and it required 2 stitches. It didn't want to stop bleeding so I had a pressure bandage on it for 24 hours and they said it will take 4 to 6 weeks to heal because it has to be kept covered at all times. Not allowed to scab over. I am hurting a bit tonight, but as I am totally weaned off pain pills I am just taking Alieve and Tylenol. It takes the edge off, but I don't know how sleeping is going to go. Biopsy results won't be in for at least 2-3 weeks. They prescribed some steroid creams for the rashes and another cream for my eyelids and ears, but am kinda waiting for the final diagnoses before filling them. I don't want to be putting any more chemical's on my body or into my body before the final report.

After the derm appointment I was scheduled to see the Diabetes Education Nurse. It was a man and he really had nothing to add to what I already knew. I had a new pump he was unfamiluar with. He admitted he was diabetic, but didn't like the idea of being hooked up to a machine so he was waiting on getting one. I actually knew more then him and he was asking me questions. Our appointment was over pretty quickly because the diabetes is really not why I am visiting the clinic, though it is definitely a complication and very brittle at this point, it is easily controlled with the pump and I am testing sugars every 2 hours. I think that the Mayo is very through and wanted to make sure that I did understand what kind of diet was important, not just for blood sugar control, but for a long healthy life. Karen is keeping me on a complex carb. diet and I am drinking or eating some fruits and veggies every day. We have mostly been cooking in our room. Or eating at the hospital. Chicken and fish have been our favorites so far, though Karen made homemade beef stew before we left this morning and it was so good. I also have been eating a lot of hummus, cheeses, and legumes. Tomorrow the hotel is having a special Nacho Bar for all it's guests. I am hoping its a cheese sauce so that I can eat because missing so many teeth, nacho chips have to be soft, kind of soggy for me to eat them. But still a night of no cooking sounds nice. If not, we have lots of left overs up here.

I don't think I have mentioned to much about God in this blog, but I do want to say that I am a Christian and I love God with all my heart, soul and mind. I may not always make the correct choice or say the right thing, but I am a human and I make mistakes just like everyone else. I am especially humbled tonight because I have been hand writing thank you notes to the people that gave money so I could be here. I have now made 37 cards and at least 25% are people that I don't even know and have just given out of the kindness of their hears. Then there are old friends that I haven't seen in years that sent in checks. As I look at this out pouring of love I remember that God's grace is sufficient for me. Over $4,200 was raised. My mom, dad, and grandma helped with a lot of that and God continued to show his faithfulness dollar by dollar. I am amazed by that, especially at Christmas when everyone had their own families to take care of and we are in a year of hardship. But God always provides. Not always the way we expect him too, but he does provide. I am finally learning to trust in Him again. It's been a long time..really since Becky was taken away and then leaving our church was devastating. But He holds me in His hands and I continue one step at a time. The best thing about God's acceptance of us is that we don't have to be perfect. We don't have to make all the correct decisions, we just have to love Him. I think that is pretty terrific.

Tomorrow back to the clinic..another day of answers. Thanks for your continued prayers. Love, becca

Restful and Fun Day

Today's blog is going to be a lot of pictures and not a lot of writing. I am going to bed early..because we have to be up super early to catch shuttles and appointments. I am getting ready to go to take my meds, take a hot bath and then bed with a book. The pictures you see are from my nature walk with Karen yesterday and from the Fashion Square today. I took pictures of lots of cool stores that I never get to see in WA but only on TV. Some of you might recongize them and some won't. We had a lot of fun just looking at everything. But no worries, even after seeing all the great fashion and stores..Macy's is still my favorite. The people in the city are so nice and very helpful. We got to see some different parts of the city today and then when we got to Scottsdale, I fell in love..Wow! That is all I can say. I wish we would have had more time to explore because I know there was so much we didn't see..but bus fare is expensive and we have to take 3 transfers to just get there, almost an hour and a half ride. But someday when I am better, I am going there on vacation...Anyways tomorrow back to the grind of doctors and tests. Thanks for the prayers. I am so glad that we got a break from the medical center and all the sickness surrounding us. Love to all, Love, becca

Monday..Monday

I was not going to post tonight, but I do have a couple things to share and I am wide awake. We are an hour ahead from home in WA state and I don't think my internal clock has adjusted quite yet. We had to be up super early this morning. It was after 6:30 am when I finally pulled myself out of bed. Needless to say I went to see the doctor in sweats, t=shirt, hoodie, and tennis shoes. No make up and hair with a barrett. Not usually a style that anyone sees me in unless it is my daily mom's group meeting. I was able to get some coffee and half a bagel with cream cheese in me before we caught the hotel van over to the hospital to catch the shuttle to the clinic. It was chilly, but the sun coming up over the mountains was a gentle reminder to me, that whatever happens, no matter what, that sun is going to continue to come up each morning and go down each night. When there is no consistancy in your life and you are hating the changes that are good for you, but hard on you, remember that thought. Where ever you are, whatever you are doing, the sun will continue to rise and set each day.

I woke up on the wrong side of the bed this morning and I didnt want to talk to anyone. My first appointment was with a resident diabetes doctor and I am ashamed to say that I had no patience with her. I knew more then she did and I made sure she knew it. She was really trying her best to figure out my blood sugars and I was beyond frustrated because I had already tried everything she was suggesting. Also she was not familiar with my pump or how a pump worked. I am sure I was not a pleasant patient. She did actually leave and go get a diabetes specialist. He was super nice and I liked him immediately. He ordered some tests, mentioned that the blood sugars were not caused by diet alone and once we figured out what the real illness was we could address that and then work on blood sugars. He did order a test that I have to have Friday to make sure my adrenal glands on my kidney's are working. He said he was sure they were fine, but since I was there, it made since to check.

After seeing him, we went to scheduling again and talked to them about my appointments. We got a lady that worked some magic and I am getting into the dermatologist this week. We called her a miracle worker. If all goes very smoothly I could be home by this time next week..wouldn't that be great? Of course there are still 6 appointments left on the schedule and any one of those can cause delays if they order a new test etc. But that is ok..at least we wont have wasted time. After that scheduling time I had to go back upstairs to wait and see the nutritionist. This was an appointment I was dreading the most and it ended up being very informative and educational. Things have changed a lot since my last nutrition appointment. I can have juice, and drink my veggies. I think that is what I am happiest about. I am not a veggie or much of a fruit eater and I know that this has been a worry for Karen and other friends and family. But the nutritionist was awesome and had some great ideas for working veggies into my diet in ways I hadn't thought of and it ended up a good appointment. The only hard part was admitting my huge weight loss and not wanting to eat. I got a bit emotional as I explained some of the stuff going on in my life and appetite and food cravings were not there. But again she had some very creative idea's for overcoming some of that and I took a lot of what she said to heart.

After that appointment we were done for the day, but we had our stuff locked up and headed outside. The sun was shining and there was a nature trail that had signs of what things were and I really needed to walk off some of that emotional stuff, so we meandered the path and looked for the cholla cactus. There were so many. I really was surprised how many of them were close to the pathway. Karen poked one with the stick and it definitely tried to grab on. I threw a rock into in and it exploded like popcorn. The only day I didn't bring the camera of course. We saw something scuttle very fast from the path way to under a bush..we don't know what it was. We know it wasn't a bird because we saw more then 2 legs, but what ever it was it was big and creepy. We ate lunch at the clinic and then headed back to the hotel. I have been working on thank you cards like crazy. I only have 8 left to make and 13 left to write in and I will be completely done.

Tomorrow I have no appointments. So we are going to take the day off and catch a bus to downtown Scottsdale. We heard that there are art galleries, shopping stores, and the fashion dist. So it should be quite the adventure. Expect a lot of pictures tomorrow. I seem to tire easily so I am sure we will be back way before dinner. Which will be yummy because Karen has another Crock Pot meal up her sleeve.. Oh one more thing before I go for the night..I am reading the book "Boundaries" by Dr. Henry Cloud & Dr. John Townsend. I would recommend it for anyone. It has been very easy to read and has some great advice. Well that is all for today. Sorry no pictures. Love to all! God bless you and keep you, becca

Sunday Night - 10:45 pm

Hello Readers,
Well it's already pretty late and I am so tired, but I was going to do my best to write about the day and some silly things that have happened. Tomorrow we have a lot going on. Tomorrow I have an 8 am appt. with the diabetes doctor and then a 10 am appt. with a nutrition doctor. And then we are going to camp out on the second floor for dermatology for a cancellation because they can't work me into their schedule until the 22nd of January and We are supposed to fly out on the 23rd. Well I know that dermatology will want to do some allergy testing and biopsy so that will mean more appointments the following week and then we will still need the wrap up appt. with my doctors and a new plan of action for when I get home. So tomorrow we are basically going on stand by like at the air port for for a doctor appt. Also if it doesn't work tomorrow, then we will have to come back on Tuesday and camp out ttheere. It is the only appt. I can't get into until the 22nd.. All the rest finish on the 14th except the final wrap up with the doctors and that can't happen till I see this doctor. Also please continue to pray for my blood sugars. They are jumping all over the place and with Karen as my witness I am eating very carefully and not much carbs, but can be low one minute and 2 hours later be at 354. And all I ate was a sandwich. So I am praying for the doctors wisdom tomorrow as he looks at these sugars. It is so nice to have Karen here to witness this because I know that I am doing the best I can and not eating any sweets, sugars etc. She is seeing first hand how hard this disease can be.

In the mean time, as I said before, we have done quite a bit of walking between hotel and clinic. I am trying to excercise a little more and take less and less pain medication. I am getting lots of fresh air that way and excercising some of these still joints and muscles. The sunshine makes me happy and wraps me in it's warmth. A good friend of mine that used to live in Arizona sent me an email with the names of the plants and flowers I have been posting. She also warned us about the "teddy bear" or "jumping" cactus. Oh my gosh. U tube it. We saw some amazing videos. Also we decided to look up Arizona wildlife and insects...tell you what, I am so happy to be on the 6th floor of this building and I am going to be walking on the road or on a well established path from now on. I vote for the next Survivor to take place in the middle of this desert. Jumping cacti, poisen spraying bugs, thorns and needles on everything. It's crazy. And the bugs...oh my gosh. Now don't get me wrong..it is Amazing here, but I am not longer quite feeling the pull of transplanting here as much as before. A girl can change her mind, right? Well it's getting late and I need to sleep. It has been a long day and I am tired and have an early day tomorrow. Love to all, and good night.

Weekends are kinda hard...

Hello Friends,

Today is Sunday the 10th. This weekend has been a variety of emotions for me. Happy, Sad, Strong (I can anything), Weak (I can do nothing), sometimes just wanting to give up and go home and other times of basking in the sun Thanking God for His Goodness and Mercy. One of the things I was diagnosed with on Thursday was Major Depression and GAD - Generalized Anxiety Disorder. I was really embarrassed about that and I am still am. My eyes tear up each time I think about it. Mental illness is a hard thing to talk about, to deal with, and to treat. But really for me, I think it hurts my pride more than anything. I am so embarrassed by this diagnosis. It was not what I wanted or expected to hear. Really I didn't, but when I read the books and look at the report from the doctor there it is in black and white. I have started on a new medication that is supposed to help with these disorders and also will have a psychiatrist to follow up with at home.
If I think about it, it's no wonder I am in need of some help. My best friend was brutally murdered, we had to close my husband's dream business, we filed a bankruptcy, lost our house, our car, left our church, was sued by a former minister/friend of the church, and are now going through a painful separation. I think maybe a lot of people would be a bit depressed by that. Then add in brittle diabetes, unexplained pain, lots of meds, and a teen-ager and a preschooler. No wonder I can't work. My brain is just jumping from thing to thing without quitting or quieting. And I have lived in this condition for a long time now. But somehow the sun still shines, the flowers still bloom, I still laugh at funny jokes and am proud of my kids. There are times I feel God's gentle voice leading me and guiding me and times when it is just blackness. But in the blackness if I take a step the light seems to come. If I stay still and am fearful to move, then it is a black day indeed. I am sure as doctors find the answers we seek, and I find hope in my Lord again, the black days will disappear all together.
The bible says that the truth is what sets us free..so I accept the fact that I am here in search of answers and the right medications for my body and even answers I don't want to hear, but the truth is that Jesus died on the cross so I would be healed. The bible says in Isaiah "By His stripes, they were healed". Sometimes the truth is ugly but once we face it, it can become a fact and a new truth will take it's place.
We went to church today at the Mayo Clinic Hospital. They have a small chapel and services at 10 am on Sundays. The chaplain was very good and his words were gentle and hopeful. He gave me a lot to think about today..one of the major things I have had to deal with is abandonment. I have been left by two husbands, I feel abandoned by family that didn't want to help me get here, I feel abandoned when ever I open the door to let that feeling overtake me. It can lead to that dark place. So today at church I really got a picture of me as a child that has lost its way and the fear that comes with it. And maybe the fact is that I get lost as easy as I get abandoned. And I need to come to the truth that if I let go of my hurts and fears I will be able to reach out to God and let Him lead me in the way I should go.
I know heavy thoughts for today..but I guess somedays are just like that. I will post again later cause I do have some funnies to share, but this post doesn't seem appropiate.
Thank you for your love, prayers, support and understanding...I know you are out there!
Love,
becca