Determination…

One thing I have discovered as a result of chronic illness, is I’ve turned into a huge procrastinator. Anyone who reads this blog can tell by just looking at when my last post was published, October 13th, 2012, and it becomes pretty clear. I don’t know what my malfunction is, but I have the most difficult time following through on simple tasks. I’ve been in this rut for months; though the rut existed before cancer, cancer definitely magnified the problem. Even so, I’m not concerned, I will work through this issue same as all the others…one tiny baby step at a time.

For the past 15 years I’ve been battling chronic illness that was progressively getting worse. And for the past two years I’ve been dealing with the ever stacking diagnoses…first gluten sensitivity, then Lyme Disease, followed by breast cancer…and most recently dysbiosis and chronic candidiasis…both of which are the result of all my issues, but mainly the aftermath of ‘trying’ to treat the Lyme Disease. To put it simply, I’ve been in my own personal hell for what seems like…forever. Those that are dealing with their own chronic illness know exactly what I’m talking about when I say ‘if it’s not one thing, it’s another’.

A few months ago I set a goal of running a 5K. I needed something to focus on that would push me to my limits and give me the strength and focus to start taking back control. A couple of years ago I wouldn’t have been able to even kid about running a 5K, but against the odds I’ve moved forward.  Training has not been easy either…each week it seems like something went wrong. I stumbled as the klutz that I am and broke a toe, I slipped on the ice and gashed open my knee, and I’ve been battling some sort of respiratory issue for several months…each of these issues has kept me off the treadmill each for up to a week at time. But I refused to give up. People ask me all the time ‘Why a 5K?’. For me it’s not about what place I come in or what my time is…for me it’s all about finishing. Crossing that finish line will be truly symbolic. Finishing will be all about taking back control, following through on setting and accomplishing a goal, and most importantly…beating the odds.

I look forward to crossing the finish line in my all too appropriate pink ribbon running gear. The race is this Saturday, March 9th, and I have my own little cheering section coming down to support me. Perhaps they will be the much-needed pressure I will need to keep my booty moving along the course. I’m determined to run and finish that race. I will only be too proud if I don’t have to walk any of it, but I have a feeling a short stroll might just be in order.

Onward…

Finding Peace…

One thing I have discovered about chronic illness…it comes with hidden blessings. Strange, I realize, but I know others can attest. I have grown significantly as a person with the diagnosis and battle of gluten sensitivity, Lyme disease, and breast cancer. Today I realize that is because of the hidden blessings I received from being chronically ill.

The most valuable gift chronic illness has blessed me with is great patience. Growing up I was never a patient person, and when I started getting sick many years ago, trying to get to the root of the problem was very frustrating. Over time, and I mean years, I have learned the answer will come when the time is right…whether I agree with the timing or not.  I now see that getting frustrated or losing my cool over things I cannot control or don’t have the answers to does nothing but waste valuable energy. I suppose part of this has been learned simply by getting old…I mean ‘older’…as well. Ha ha! Most of the things in life that we stress over truly don’t matter anyways, but unless it is put into proper perspective, we can’t get out of our own way to see it. I found this wall plaque recently, and it’s now a question I ask myself regularly…it’s amazing how easily you can dismiss something when you validate it this way.

My Motto!

Think about this for a second…it’s amazing how many things just suddenly melt away. And what is left is where you truly need to focus your energy.

I’ve also been blessed with these gifts as well:

1. Inner strength that continues to grow.
2. Positive energy – I used to be a negative person. Chronic illness has opened my eyes to all the little things I took for granted and shown me how truly blessed I am.
3. Drive to find the truth.
4. A renewed ability to find humor in just about every situation possible.
5. The amazing fight and strength needed to rebuild. I never accept defeat…this wasn’t always the case with me.
6. Intense faith.

The last one is something I notice is missing in a lot of people these days. I’m talking about having faith in whatever is needed to make things happen in your life.  You could debate that believing something won’t happen is having ‘faith’ that it won’t happen, but I think that defeats the purpose.

In my case…

• I refuse to accept defeat. I have faith I will win all my battles.
• I refuse to give up hope. I have faith there is ALWAYS a chance for resolution.
• I refuse to sit idle. I have faith in my ability to move onward and upward even if only tiny baby steps.
• I refuse to feel alone in my battles. I have faith God is walking this journey with me, especially when friends and family members can’t be here with me.

Having strong faith has taken me to California when all the doctors in Wisconsin said nothing was wrong, only to be diagnosed with gluten sensitivity and Lyme Disease. Faith has taken me to Mayo when I just wasn’t getting the answers I needed and wanted a higher level of care, and I found it.

So what does all this mean? Chronic illness brings hidden blessings…look for them and you will find peace…

Embracing the problem…

At some point in time in the last few weeks I decided to embrace the weight loss issue I’ve been struggling with endlessly. I’ve always been a few pounds underweight my whole life, but things changed drastically last year when I went gluten-free. Being diagnosed with gluten sensitivity my doctors put me on a modified elimination diet to see if I had any other food sensitivities. Normally this wouldn’t have been a big deal but when I was diagnosed with Lyme Disease a couple of weeks later I was told to put everything on hold and not eat anything in addition to what I was already consuming. Reacting to a new food would put stress on my body and hinder recovery.

Unfortunately that meant that I was only eating about 20 different foods. At that time it was fine. I had enough of both fruits and vegetables to survive endlessly. But as time went on we realized I was battling yeast throughout my body which had been aggravated by all of the antibiotics from the Lyme treatment. So several months in I had to pull out a few of the vegetables and all of the fruit since sugar feeds yeast. My list of foods dwindled to about 12. I had already lost a couple of pounds just from the initial diet change, but this reduction resulted in a few more pounds of weight loss.

Considering this went on for a year, I felt pretty good about only losing about 7 lbs over a year’s time. Then cancer and kidney stones happened. Both required surgery, and the anesthesia affected me in a way I hadn’t expected….I didn’t want to eat. Food tasted bland or was a complete turn off, and my interest in eating just didn’t exist at all. After each surgery this problem went on for about two weeks each time. The end result has been that I’m now 17 lbs underweight. Ideally I should weigh about 130 lbs. This past week I hit an all time low at 110.5 lbs.

I understand what has happened and what needs to happen. I’ve been trying to gain weight for the last 1.5 years with little luck because of all the hurdles. So my situation isn’t self-inflicted, and it is also expected to a degree considering the turn of events. Yet, I look ‘ill’ because I’m clearly too thin, ALL my clothes hang on me so I look frumpy and sloppy, and people find it necessary to comment on my weight, as if I’m purposely doing this to myself. I have to admit there are times I hate people….

The last few weeks I have had better energy and my spirits are high, so I decided to start dating (more on that later). But in doing so I became more self-conscious about my appearance, as I should be. So what did I do??? I WENT SHOPPING!!!!!!!

With all my medical bills over the years, I haven’t truly gone on a shopping spree in years. It was the greatest feeling ever! It sounds funny, but I felt alive! I bought jeans, dress shirts, a suit, sweaters and blazers. I’ve been dressing up every day and I started curling and putting my hair up as much as my energy allowed. The positive comments I have been receiving have been an amazing blessing.

I know I just spent a good amount of money on clothes that are smaller than I normally wear.  I typically wear a size 4 and I bought several items in size 2. And when I gain weight many of these articles of clothing probably won’t fit anymore. But I realized something the other day. Somewhere along the way I stopped living in the ‘now’. I’ve been waiting for the weight issue to resolve itself, and quite honestly I finally realized this issue may be with me for awhile…a long while. The most important thing is I’m fine with the weight, and I’m comfortable with the way I look. Which is a good thing because now that I’m wearing clothes that fit, the negative comments about my weight have increased a bit.

I’m comfortable with who I am and my journey. I know what will come eventually. I’m living in the ‘now’ again and loving life. I’ve stopped trying to rush things and I’ll take my journey as it comes and when the weight gain finally happens, I’ll deal with it then…

Onward…

Like a Rolling Stone…

I haven’t posted on my blog in over a month. I have been in the worst post-surgery ‘funk’…nothing in life seemed to carry any sort of priority, including my physical therapy. I’ve heard stories of people falling through the cracks after a major surgery but I never fully understood it, until now…

My body seemed to recover from the shell shock of having a part of it cut off, but my mind is what suffered the biggest setback…and I couldn’t even tell you why really. About a week after surgery I struggled to even eat a regular meal. Food had lost its pizazz and I had no appetite. I was losing weight,…and I didn’t care. I was healing, after all, right…this was normal, I was sure of it. I got to the point I didn’t even really eat.

My caregiver left after that first week as well, and though that was a good, healthy, needed change for me, it also meant my help around the house left too. Dishes piled up, errands were left undone, mail seemed insignificant…life had screeched to a halt. It wasn’t remotely pretty. I continued in this downward spiral for three weeks. Knowing if the physical therapy wasn’t started I would lose the range of motion in my left arm permanently, I knew the urgency…yet nothing happened. The ‘funk’ had taken over my very being.

I’m strong by nature, so this whole way of life was maddening to me. Why couldn’t I kick it? I knew I had to pick myself up, and take charge…and soon. I prayed to God for focus…I prayed for my inner ‘fight’ to return. I needed the strength and will of God to push me through this. The next day I woke with new energy. I started my physical therapy and cooked all my old foods…I had to get my diet straightened out. I returned to work. Life seemed to be coming together. Therapy was painful. Eating was still a struggle. But I was moving forward…

Life seemed to be coming together for about two weeks…then one night I just didn’t feel well. I was doing therapy at the YMCA and I started to have pains in my side. Shortly after I developed chills and a fever. It didn’t take long and I decided to go to the emergency room. After a series of tests it was discovered I had a urinary tract infection, large cysts on both ovaries, and a kidney stone of all things. By then my friend Traci had joined me for a little comic relief…we both looked at each other and just burst into laughter. I’m sure the staff thought we were crazy. But we both thought “seriously??…how could one body have so many things go wrong?” The last couple of years it has just been one thing after another. They sent me home with some pain meds and antibiotics.

I wasn’t in too bad of shape, and the pain really hadn’t been that bad, so I proceeded to go about my weekend and headed to a U.W. Badger football game. Bad idea. At half-time I left early, the pain was creeping up, and fast. By the time I got back to town I headed straight to the E.R. again, I’ve never experienced pain like that in my life. This kidney stone was making the mastectomy look like a piece of cake.

Long story short I ended up in the E.R. three times in 24 hours and then was admitted for outpatient observation. Had surgery on Labor Day to blast the stone and put in a stent. I spent my entire Labor Day weekend in the hospital or E.R. and then landed back in the E.R. this past Thursday because of pain, yet again. It’s been a rough week. Even today, the pain I feel I can tell I haven’t passed the stone pieces yet…who knows how long this ordeal will continue to plague my very being.

My funk continues…but I’m fighting like hell to regain ground I’ve lost. How did I get here? How long will I be here? Where did this all go so wrong? I don’t know the answers to these questions…and quite frankly the answers are irrelevant. All that matters is getting back my life and correcting the direction this journey has taken. I used to think ‘one fight at a time’ but clearly that isn’t the case. My physical therapy hasn’t happened in a week now with all that has been happening and my food struggles have returned…ground has been lost yet again.

Personal battles with cancer, major surgery, a lifelong illness…people struggle with issues of this nature all the time. People tell me I made it all look so ‘easy’…they have no idea how much I’ve struggled, nor do I want them to know. But I think about all that I’ve been through and I think about how ‘strong’ I am. So what does that mean for someone who is not strong by nature? The thought is terrifying to me. How all of this can consume even the strongest person…a weaker individual would be helpless to the evils that accompany this battle. Makes me want to survey the lands around me and seek those that have fallen prey to this nightmare. I want to lift them up…praise their life, their journey, their battle….but to do so I must fix myself first.

One day, one person, multiple fights….I CAN do this! Onward…

Sophie’s Person

Last night I was looking at my cat, Sophie. She was curled up next to me and sleeping so peacefully. I found myself thinking back four years ago when she entered my life. Word was coming out of our local shelter that Sophie was going to be euthanized because she was so ill. She was only three years old at the time and had spent the previous two years in a crate in the medical quarantine trailer…she had never seen the adoption floor. A friend of mine put in a good word to the staff at the shelter to trust me since they don’t adopt out sick animals, and so I was permitted to see Sophie. She was covered in bloody sores from head to toe, her fur was falling out, and she was sporting a cone. Despite her awful appearance, Sophie locked eyes with me when they brought her crate into the main shelter area. As they opened the doors she never broke her gaze as she crawled out of the crate and into my lap. She looked up at me, and her little face just spoke to me… “Please save me, please…get me out of here”.

I asked what was wrong with her and was told they didn’t really know. She had been seen by four area veterinarian clinics and all they could come up with was she had an auto-immune disease as her ears constantly were turning bright red. They were continually applying steroids, and had since she arrived two years prior. As sick as she was, I didn’t care. I wanted to give her one last chance, and I had great confidence in my vet. I adopted her and took her home.

Unfortunately my vet failed Sophie as well, diagnosing her with a food allergy. After one week, a friend of mine agreed with me something wasn’t right, and offered to take her to yet another vet that another friend of hers used. I agreed and Sophie was seen that same day. In less than five minutes the new clinic diagnosed her with ringworm. She had contracted it in the shelter and had it so bad she lit up like a glow-worm under a woods lamp. All of the steroids tipped her immune system in favor of the ringworm. She was so sick she was literally only a few weeks from death.

Sophie in recovery at a Wildlife Rescue

Sophie spent the next six weeks at a local wildlife rehabilitation center receiving care that was above my knowledge. I visited her regularly and at the end was able to take her home, where she made a complete recovery. Shortly after that I discovered the redness in her ears, the initial problem the shelter spoke about and diagnosed as auto-immune, also presented on the pads of her feet. It didn’t take long for me to see this was happening every time Sophie was happy or angry. Sophie didn’t have an autoimmune, Sophie was filled with emotion!

None of the other vets bothered to check her for something so obvious. When I think about all of this I can’t help reflect on my own health history. I’ve been misdiagnosed as well, and I’ve spent several years of my own life left out of activities, sat at home, and felt like there was no hope. I’ve seen just about every type of specialist at some of the best clinics in the country. All of this with no luck.

I lost faith in western medicine and I turned to alternative medicine seeing a homeopathic M.D. and then an acupuncturist. The only improvement I saw was getting off all the medications the previous doctors had put me on. A huge step in the right direction, but still no improvements in my symptoms. Out of total desperation I turned to the internet and started doing all my own research, and that’s when I found my first person…Alison St. Sure.

After one of thousands of Google searches I stumbled on an article Alison had written about gluten and sleep. Alison has Celiac Disease and has a site, Sure Foods Living, devoted to Celiac, gluten and food related issues. She talked about sleep paralysis and until that moment I hadn’t realized one of my symptoms had a name. Intrigued I looked through her site from one end to another and found a section about her symptoms before a gluten-free diet. I had 98% of her 26 symptoms. It was at that moment I knew I had my answer. After researching gluten sensitivity further I found 10 more of my symptoms were gluten related. I had already been tested for Celiac and tested negative, so now I needed to find a doctor more versed on the subject of gluten.

My second person is now my good friend Matt. After we met, Matt quickly started helping me research gluten. One day he passed me an article about gluten sensitivity that was so good I had to track it to the source. The source was HealthNOW Medical Center in California. Much to my surprise, they had a portion of their clinic designed around treating patients from all over the world. I filled out a form on their website for a free phone consult and they called me not two hours later. Impressive! What they had to say about gluten was not only dead on for me, but they practice around treating the whole person. I was sold. I scheduled all my labs and made my final arrangements to fly to California not four weeks later.

My third person story is unreal. I was flying to California in less than two weeks when I received an email from my cousin in Indiana. We don’t talk very often but she knew I was struggling with my health. She had seen the movie Under Your Skin, a documentary about Lyme Disease. She urged me to check into it. She didn’t know anything about my symptoms so I figured it was a long shot but I also didn’t know anything about Lyme Disease, so I looked it up. I had all the symptoms of Lyme Disease but still had many more. It was a possibility but I knew there would still need to be something else to cover the other symptoms. When I arrived in California I spoke with the doctors about it and they were hesitant…until the last day I was there. They had a group discussion about my case and they agreed. They had already given me my lab results showing I had gluten sensitivity but agreed the Lyme test was still a good idea in addition to a test for Epstein-Barr virus. Both came back positive not four weeks later. Had my cousin not passed on that information I probably wouldn’t be diagnosed today.

Happy & Healthy!

So looking at sweet little Sophie I’m reminded it takes just one person to help turn your health around…I was Sophie’s person. I’ve had several people…so now I sit here wondering with excitement who will be the next person to move my health further in the right direction?

Onward…

A New Level of Fatigue

One of the things I found out last Friday when I went to Mayo was the doctors added an additional two weeks to my leave from work, for a total of four weeks off. At the time I didn’t think much of it, but in the last few days I’m starting to understand how much of a blessing that change is going to be.

Last week all I did was sleep, eat, and lay around on my couch and watch t.v. in an effort to let my body recover. However, this week I have tried to do a few small tasks around my house with utter failure. Tuesday I picked up some small things around the house for maybe half an hour and then had to take a one hour nap. Wednesday I took two of my cats outside, since they haven’t been out in weeks. Each went out for about 20 minutes on a lead while I sat on the front step. This idea resulted in a two-hour nap afterward. I can’t imagine trying to sit at my desk for eight hours right now working at full capacity. But none of this should have surprised me since simply taking a shower wipes me out. I would imagine it’s like being an 80-year-old in a 39-year-old body.

Prior to the cancer diagnosis, Lyme Disease had me on a regular roller coaster when it came to energy. One day you feel half way healthy, the next your whole body aches, you have a heck of time getting out of bed in the morning, and walking across the parking lot to your car you keep saying in your head “…almost there, just a little bit further…”. I can’t say for sure, but based on my experience to date, I think my recovery from the mastectomy is being accompanied and hindered by my Lyme Disease.

I need to start Lyme’s treatment again ASAP, but I have another issue that needs addressing first. The same day I received the cancer diagnosis, I was also diagnosed with Dysbiosis. If you aren’t familiar with Dysbiosis, in short, it’s basically when the unhealthy bacteria that we are exposed to everyday gets out of control and your body can’t keep it in check any longer. Small amounts are OK, but once out of control they cause all sorts of issues. The healthy bacteria no longer has what it needs to survive and the numbers start to decline resulting in all sorts of symptoms including yeast infections, gas, and bloating to name just a few. And what is one of the number one causes of Dysbiosis? The treatment for Lyme Disease…ANTIBIOTICS!! You can probably start to understand the twisted web that is my health right about now. Ha ha!

My labs from June 2011 actually had a little bit of Dysbiosis but it appears my Lyme’s doctor didn’t see, or possibly understand that, and so my body wasn’t prepared to fight it with the addition of all of the antibiotics. It only took a few months and my progress was hindered by chronic yeast infections, bloating and gas beyond belief every single time I ate, and my fatigue was creeping back more every week. If you Google Dysbiosis, the symptom listing matches my case perfectly.

What does all of this mean? It means I can’t proceed with Lyme’s treatment until I get the Dysbiosis under control. Unfortunately Mayo Clinic’s doctors pulled me off all 20 of the supplements I was on prior to surgery and won’t give me clearance to start supplements or medications of any kind again for at least another four weeks. So for now all I can do is ‘deal’ with the symptoms of both the Lyme Disease and the Dysbiosis.

In the meantime, I’m still moving forward one step at a time:

Step #1: Start my post-mastectomy range of motion therapy at the YMCA with my personal trainer.  I don’t need my trainer to do the exercises, but she is going to help me with long-term therapy once I get back into my Lyme’s treatment down the road.

Step #2: Continue to add in new foods to my regular diet (more on that later).

Step #3: Remind myself daily how incredibly blessed I am!

I have a long road ahead of me…all the more reason to get started on the steps that I am able to. My poor health will not define me. I pick and choose the items I can control and I work on them while moving toward steps that are still a bit out of my reach. Each day brings new opportunity and a new chance to kick some booty!! Onward…

Life…

I found this little sign on one of my recent trips to Mayo Clinic and I couldn’t help myself, I think it fits me perfectly! I’m sure there are a few of you that will be drawn to it just the same…if anything it brings a smile and a laugh in the very least! LOL

Love it!