“Life is like a Box of Chocolates….”

Life truly is like the unidentified chocolate candy box you get as a gift around Christmas. Sometimes, we get into something that we don’t like and other times it can be absolutely decadent. For example, the caramel is so yummy! You bite into it and the caramel strings from the center of the candy down your lower lip and tastes so heavenly. Then, you try another piece that is lemon or trying to be a fruity cream inside that makes you gag.

Autoimmune disease is very similar to this analogy. There are days when you feel better than others and are able to truly enjoy life. Most days in the winter are like the fruity cream chocolates. Not near as good as the summer day caramels. I have to say this winter came in so cold before the initial day even started. We had below zero temperatures in early December. My body was not liking that!

I want to reach out to more people and share my story and share with so many how:             1) attitude is key to surviving this 2) there is hope in a treatment plan! Currently, I am fighting insurance a second time so I can get the Humira started soon. My dream is that this will be an amazing answer for my pain control and being able to move without feeling so stiff.

I truly went from being bedridden and hardly ever going out to a diagnosis and starting multiple medications to help with the arthritis. I have learned that some medications are worse than others when it comes to helping. Some, cause so many side effects, it’s not worth it. Sometimes, you have to take another medicine to counteract the effects from another. Crazy! I would love for this to be something I could manage without meds but I tried it and I was a mess!

For once in my life, although I have never tried it, I am starting to believe in medicinal uses of things such as marijuana. Being a chronic pain patient and the things pain effects that are vital could be helped by marijuana. I have researched a lot about it and just feel like Big Pharma doesn’t want us to be able to get access easily so that they won’t lose money on all the big brand meds the doctors prescribe. What are your feelings about medical marijuana? Have you tried it for those of you in a state that it is legal? I have seen how there are strains that stop the shaking in Parkinson’s disease, others that help with seizures, etc. Why can’t we have medical access to this? It has to be safer than opiates. Thoughts?

 

Advertisements

Baby it’s COLD outside!

As many autoimmune disease sufferers will understand…the cold feels like knives stabbing our joints. It is so hard to get out of bed. It is so hard to get dressed. It is so hard to just make yourself do life! But, you have to press on. The more you hibernate the easier it becomes to be that depressed person that isn’t fun to be around. I have to say we all have our moments but fighting a double whammy is NOT easy.

I have spoken about my arthritic condition but as many people will find those who have one autoimmune condition usually end up with others. I have multiple issues to contend with when it is cold. I also have fibromyalgia which is fairly well-managed but add in the arthritis and man oh man the muscles and bones ache. My son was rubbing my neck in church today and said mom your neck is so tight. Well, chalk that up to the fibro. So, when the muscles and joints don’t want to oil up and get moving it makes it extra hard to push yourself. Not to mention the fatigue on top of the shortened days. Shew this is a recipe for disaster.

I highly recommend keeping a journal to see what triggers you have for any illness. That way you learn your body and it’s response to food, climate, and so on. I am the world’s worst on journaling my triggers but I have gotten pretty good at learning what they are from process of elimination. I know that certain foods increase my inflammation, that the cold does not help at all, and that getting out with people is so important.

For two years I was a prisoner to my own illness. I stayed inside all the time. I had no pain relief and no hope at this point. Doctors were not sure what was going on felt like I was just imagining my pain. I started seeing a psychologist because I needed to feel like I wasn’t crazy. I needed to talk to someone who would listen no matter how negative my thoughts were. I am so glad I did that because it got me through a very tough valley before I was diagnosed.

I had no idea I would feel such delight to have a diagnosis. A diagnosis that would possibly debilitate me and be with me forever. But, I wanted to validate my pain and help me understand my body.  However, now the truth remains, I have to live with this diagnosis and learn to be the best me. It isn’t always easy. I hurt, I ache, I feel nauseous from pain. But, I press on. I make myself be a mom. I make myself be a wife. I make myself be what God intended me to be. I want to serve others even when I don’t feel like it. That is what Jesus would do.

Have you ever wondered why you are who you are? I know who God created me to be. I am fearfully and wonderfully made, even if I hurt. Only God can heal me and take this pain.

It is so hard to explain the pain I feel daily to people who don’t suffer from a similar illness. I can probably relate it to the way you feel a couple of days after a car accident, or how you feel with full on body aches from the flu. I pray that I can start Humira soon and that it helps me because if this winter is going to be in the teens all winter; I am in for it. My prayer is for an understanding for those with this condition. I pray that people as well as doctors will listen to your story and help you find a treatment plan. My prayer is that they will find a cure for these types of arthritis.

I have met people as I have become open of my illness that also suffer. I never knew they had this illness. And although I wouldn’t wish this on ANYONE, it is comforting to talk to others that can relate. I am so blessed to have great friends that understand even though they can’t feel my pain. I am so blessed to have a family that understands even though some wish they could take some of my pain. I am blessed to have a God who is able and will do great things in my life, despite my illness.

I can’t let an illness define me. I can’t let an illness become all I am consumed with. But, I can share with others and help them overcome the pain, the fear, the acceptance. I can help others relate to what you go through in your journey to diagnosis. I can be a mentor and love on those who need a friend. I am here because God has given me something to share and to bless others. I love you all and am here whenever you need a listening ear. God bless you all!

 

being-sick

Quote

I am ENOUGH!

 

covers

The wind is howling and the house is silent. The house makes popping sounds every time the wind blows. You feel frozen. Frozen that if you get out from under the covers something will get you. Life can be the same way. We can be silently hurting or suffering and just keep it covered up because we feel safe. I challenge you to be BRAVE and tell what you are hiding from. What is it that is paralyzing you from personal growth? How bad will it truly be to share your burdens?

The thought of allowing something in your life to control your mind and keep you from being the best you must end. You must come to the dead end and decide how you will begin to expose the mess you hide behind. It may be small. It may be huge but nothing is better than having someone be a support system and not walking this alone.

Is it an addiction? An illness you won’t accept? Is it a failing marriage? An old conflict? Feeling like a failure in your job or even job loss? Think you are not a good enough mother? What is it that makes you lie awake at night and not allow you to move forward in your life.

I am so glad that through all of my pain and suffering with my autoimmune disease, which has caused me to feel so many emotions; I still have a strong support system. Not only do I have my earthly friends and family but I have God to hand over my burdens. I can ask him to take those from me so that I can grow as a person. With God, I am enough. I am no longer paralyzed by the sounds or problems anymore. I may still lie awake sometimes but now I chat with God about my blessings and how I will always need His help in those weak moments. I no longer worry what people say about me. I don’t worry about the friends I don’t have; I focus on the ones I do. When we focus only on loss, we begin to empty our healthy mental tank.

It is safe to say that my faith is what got me through these last few years of pain and suffering physically. Faith and worship are what has refilled my tank over and over again. Physical weaknesses can lead to mental weaknesses and you begin to think you aren’t enough. You begin to think life is a dictionary full of negative words. There seems like no light without God.

Why is it that way? I have always said I would rather believe and love my Lord and go to Heaven in the end then be wrong and just stay put. I choose to live my life for Him. I choose to live my life full of hope, healing, love, peace, and understanding. With God as your focus it is much easier to get out from under the covers. It is much easier to erase the negative words from your lips. It is much easier to know that even though the trials are the same and the fear sometimes creeps up; I am enough!

Medications

So many times I want to just go cold turkey without meds. However, I am on so many for maintenance of this disease. I will start by saying I remember when I was a new nurse and patients had 2-3 pages of medications they were on in their MAR. I thought to myself my goodness these people are a mess; I feel bad for their poor health. Now, I find myself as one of those people.

I have learned that modern medicine can be a very beneficial thing. I used to frown about having to take Tylenol or Motrin now I have a daily pill holder for my week. I never dreamed I would look my best on the outside but feel the worst ever on the inside. Constant pain, bones aching, joints so stiff you limp if you get up after sitting too long. This is the new normal. However, most of the medications I take are to manage all of my symptoms.

Some of the symptoms I have include:nausea, migraines, TMJ pain, restless legs, insomnia, chronic fatigue daily, muscle spasms, and back aches. I sound like a train wreck when I put it into writing but keep in mind I don’t have every symptom every day. Some days I find myself only with a migraine or severe headache when others, like the cold winter days, I have multiple symptoms.

After going through last winter and losing about 20 pounds not trying to I was put on Zofran twice daily for my nausea. I never had an appetite and when I ate  I just wanted to puke. It comes in spurts. I am kind of at that point again. Nothing sounds good so I just pick at foods. I always crave fruit which is great but I hate the ups and downs of my appetite.

The best medication I was put on was Celebrex so far. I am at the maximum dose of 400mg a day and am amazed at how much it helps. I take Modafinal to keep me awake; sometimes twice a day. I take Skelaxin up to 4 times a day for muscle cramps, spasms and soreness. Folic Acid nightly to help me as a piggy back type med to the Methotrexate I take once a week. I also take Melatonin Ultra for sleep. I take a daily steroid in the morning as well.melatonin

Something I have not touched on much was the depression aspect of a chronic illness. Despite hearing for over 2 years my illness was all in my head, I knew the mental state I was in was growing more and more weary. The doctors increased my Prozac from 20-40mg to help with my anxiety and added in Abilify this year as it is experimental with patients that have Fibromyalgia along with other autoinflammatory diseases. blog-pills

So many times I think to myself; “Why do I need pills to sustain me?” The answer is I don’t but to have a happy and better quality of life I do. What truly sustains me in life is my Lord and Savior Jesus Christ. I know if He wants to heal me…He can and He will. However, all I pray is for my heart to stay happy and to be able to do things with my family and friends some times. I may need days off to rest after big events. I may even need my husband to help me up the stairs. But, I am blessed to be off the couch!

I am not writing this to tell you about my medicine cabinet. I’m hopeful that you too can find a medication regimen that works for you and helps control your illness so you can carry out your Activities of Daily Living (ADL’s). Something I never shared with anyone was that there was days that I couldn’t even get the energy for a full shower. I knew it would take too much out of me. I struggled just to go upstairs, to stand and cook was exhausting. I could go on and on. But, now I can do most of those without dread and still have a little energy left over. Maybe not much but enough.

Another part of my treatment plan includes steroidal injections into my joints or head. These are injectable meds so they are much more potent since they are administered straight to the inflamed site. Therefore, I only get a type of injection about every 4-6 weeks. Injections allow you the ability to get sedation but I never do. After all of the things I ask of my friends I don’t want to have to ask for a driver all the time. And with Shane always away working I can’t ask him either. So, I figure if I tolerate daily pain what is a few minutes of agonizing pain going to hurt.

I used to try acupuncture which did help my headaches but it didn’t last long enough for me to keep paying for it. Massage also helped but my muscles would knot right back up within a day or two. Even my massage therapist used to say something isn’t right with you muscles. I don’t understand why they won’t stay released. I am sure part of the tension is from pain and the way your body carries itself different when you are uncomfortable.

You see something I have learned is don’t judge those people with 3 or more pages of medications (some I’m sure are as needed like mine I didn’t list). Don’t assume that person is whiny, or weak, or just giving up. I tried natural stuff. I tried essential oils, massage, saunas, acupuncture, a specialized diet, and no medication at all. I might have felt better for a minute but it never sustained me or touched my pain. I came to the crossroads where I had to suck it up and move forward knowing that I will need medication for this in order to be functional.

I do believe the diet was very helpful and that was the hardest thing to do because I had to give up SOOOO many foods. I had to watch myself for foods that affect interstitial cystitis, fibromyalgia, and arthritis. Mostly, you follow an anti-inflammatory diet. Then, you can try to work a few of the more natural foods in as you follow this plan for a while.

I will discuss my diet plan in another blog soon. I really appreciate those of you who are reading this. I have another post to start and then bedtime it is!

Travel, travel and more travel

My husband as many of you know took a different job at the beginning of my illness. It was supposed to be about 25% travel. Slowly it has become 100% travel. This has been very difficult for our family. While I am feeling much better than last year I still have my days but now have the mental health to push through for my kiddos. It isn’t easy-going all week without seeing the man you love so deeply but it has become our new normal. There have been a lot of adaptations along our journey and we have learned to roll with the punches.

I have grown myself, as a mom, and as a wife this year with all that I have gone through. I don’t take little things like energy when I wake up for granted in more. I don’t take the 2-3 days I see my husband for granted anymore… I seize the moment. I also have become much closer to my kids as I have spent many evenings helping with homework, taxiing them, and sometimes just laying down beside them to talk about life. There are the things that make me thrive. I love life even with this illness. I love my family! I love that my faith has been restored. Faith in the Lord, in my family, my friends and even healthcare.

I had a dr. visit yesterday at the pain clinic and had some injections done and the SI joints bled alot because I waited to long for the steroid shots. I hurt pretty bad afterward and my legs were weaker than they ever have been in the past times I got these shots. But, I just decided that this too shall pass. I have too many blessings to worry about those things that can heal with rest.

I am now working full-time but just had a surgery to fix some problems after I had some internal prolapse from a hysterectomy. After my surgery, which was supposed to be outpatient and on the day before Thanksgiving, I hemmoraged and had to be packed and then taken back for another surgery. Thank God for great nurses that caught the problem and monitored me so closely and kept the doctor informed. It could have been a lot worse.

I am still slowly healing from the surgery. They said it could take 4-6 weeks and I believe it. I have learned I over do things after surgery and it sets me back. I have been exhausted this week.Resting when I can so I can try to work more next week.The thing you learn about any autoimmune disease is that you have to take things slower and listen to your body. You become an expert on your body and how it feels. You learn what each pain, cramp, and weakness might mean and how to handle it. You learn that when you sleep all day you probably needed it. There are so many things I have done different now that I am on a treatment plan and have went back to work. I try to eat better, which can be hard around the holidays. I try to rest when  I can. I plan ahead for dinners. I make less trips up the stairs if I can.

One things I haven’t spoken much about is how amazing my husband has been through this. He has held me in his arms in the middle of the night while I cry out in pain. I have kept him up all night on my really bad nights trying to take 3 or more hot baths. I have had to wake him up for him to rub my muscle spasms. I also struggle with restless legs sometimes and he will lay his legs on mine to provide pressure to calm them. He has been so supportive. He got so frustrated when the doctors couldn’t help me in the beginning.Beyond my Lord and Savior, Shane has been my rock through all of this.

My kids have been helpful too. They have learned how to do laundry, cook easy meals, and help a lot more around the house. This has been so nice!

I have some amazing friends too that help me by listening to me ramble, help with carpools, and be encouraging! Thank God for people who understand and truly love me unconditionally because sometimes all I can do is just be a listening ear as a friend.

I challenge anyone with an illness to try to be more  positive and look for the good things in life even if your pain or disease takes over sometimes. I challenge you to still find something each day that you are blessed with or you are thankful for. My life is totally different now but I love it and am so much better because I have accepted my new normal.

 

 

 

What the heck is HLA-B27?

Taken from Medlineplus I really like the way they describe it.

A positive test means HLA-B27 is present. It suggests a greater-than-average risk for developing or having certain autoimmune disorders. An autoimmune disorder is a condition that occurs when the immune system mistakenly attacks and destroys healthy body tissue.

A positive result can help your provider make a diagnosis of a form of arthritis called spondyloarthritis. This kind of arthritis includes the following disorders:

If there are symptoms or signs of an autoimmune disease, a positive HLA-B27 test may confirm the diagnosis. However, HLA-B27 is normally found in a small number of white people and does not always mean you have a disease.

The antigen was something that 12 specialists did not check for. They kept looking at the most common studies which weren’t revealing anything. This is why I even began doubting myself. I began thinking maybe they are right. I had learned about psychosomatic pain in nursing school. But, this was so real. This felt like it was stealing my life. No matter what I was not quitting until that 12th doctor, who tested for it and found that I am have autoimmunity and autoinflammatory responses going on.

When in sales you are told that some people don’t make the sale until the 5th time. Imagine if would have given up at 5? Or 10? I would have been so close and just to throw all the money and time I spent researching and driving to doctors. Persistence is important. It is SOOOOO easy to give up when you don’t have the energy to even make a phone call to set up the appointment. But, you have to push through and know that YOU are worth it!

You may not have a healthcare background that I am so glad I have; but you can ask me for my personal advice anytime for what the best start might be. I am here for you. That was what was laid on my heart and I why I began this blog.

 

Waiting is over

I walk into the Rheumatologist office to find out my results and hear him say most of your labs were fine that pertain to autoimmune disease but you had one show up positive. The HLA-B27 antigen was positive which is most likely why you have had so much trouble. This antigen is responsible for the condition of spondyloarthritis but most devastating is the Ankylosing Spondylitis. Dr. Bell thought that I was struggling with the condition leading to AS and said no matter what we treat them the same and treat you like you have AS. So, I want to start you immediately on some medications to help control the pain.

I was speechless. Someone took the time to not only believe me but had figured it out. Someone that understood autoimmunity had figured out my almost 2 1/2 year struggle. Thank you Lord for placing this man in my life and for his wisdom to discern the problem. I took things very lightly that day and was actually pleased to finally have some answers to my all over pain and joint problems.

Until…the next day. I went to my son’s lacrosse game. It was chilly out and I bundled up. I wanted to be there after missing so many because it was in our town. My wonderful lacrosse friends, that have become family, asked how I had been doing. My response was nothing but tears. I began to explain the condition and how it can be disabling. I cried for what was. I cried for the fact it isn’t curable only treatable. I cried thinking I may never be able to do things I enjoy as I age with this disease.

They comforted me but understood it was all new and the unknown is scary. As I engaged my thoughts back to the game I began to lose this sadness and realize the more you think and dwell on it the more depressed you will become. I was already medicated for depression and felt so much better mentally. Along with my wonderful counselor who helped me to see me past the pain and changes.

I began my treatment of Celebrex and Rayos. Rayos being an extended release steroid (Prednisone). Rayos would have been $2,200 a month out of pocket but my doctor helped me by referring it to a specialty pharmacy where I get it for $10! Thank goodness. We would have lost it all paying that for one medicine. They seemed to help a lot at first and within a month I was outside doing things I hadn’t in 2 years. I was attending sporting events, grocery shopping, back to church more regularly, and I had some pep in my step.

I still was having flare ups and was not even 75% better though. So, he added in Sulfasalazine. This is a DMARD that they use to treat Rheumatoid Arthritis as well as AS. After 3 months of taking that I found that it didn’t do anything for me. So, we moved on to Methotrexate. For those of you who have heard of this yo u may assoicate this with chemo therapy. It is a chemo therapy drug that they give to cancer patients at much higher doses but for us with autoimmune arthritis it is a low dose, once a week jolt to the immune system to calm it down.

All of the things I take have helped or I wouldn’t stay on them. I have found between the meds and my steroid injections to my head and neck as well as SI joints have kept me moving.

I decided this summer after being denied disability that I was tired of fighting. Fighting pain, fighting doctors, fighting to just get up and move everyday. So, I gave that up and prayed for what was next.

I found a job in healthcare recruiting and was able to start immediately. It was so quick I didn’t even think about what I was doing jumping in from being on a couch just a few months before ALL DAY to a full-time job. I have done well so far with my health but it has its obstacles working. I have days my coworkers see me with an ice pack strapped with a velcro strap around my neck while I work because my neck pain gets out of control. I had to have the laptop boosted up so I could be more ergonomic due to my neck problems. A great friend brought one in that I could use. It is the little things that are hard. For example, if I drop something to bend down and pick it up is very difficult for me. I get migraines often from the flourescent lights and computer screens. But, I press on.

If I don’t push through depression the “I can’t’s” creep up. It is a battle daily to get out of bed, go to work, and continue to be active until my head hits the pillow. But, I know with God ALL things are possible. I had almost given up when I went to Dr. Bell. I was weeping in the initial visit just telling him the journey thus far. It was so hard to just express the pain and the agony of knowing you hurt but not knowing why!

Fast forward to today. I am waiting until December 16th before I can try for approval of Humira. Otherwise it is $1,800 a shot and I need 2 shots a month. No thanks for that! I have to be on Methotrexate for 3 FULL months before adding in Humira. Again, Humira could be a great answer for me (especially with this stiffness from the extreme cold). It however, can cause a decrease in your immune system like Methotrexate  and Rayos do. Therefore, I have to be ever so careful so I don’t get sick. I have caught EVERYTHING that has come around me so far. But, I keep picking back up and carrying the torch. The torch of “I can’s”. The torch that carries the light I needed in my life when this all started. This is the torch I want to pass on.

In reading this blog it is my goal to not only open up a private chapter in my life but to allow others suffering the ability to read that they are not alone. You are NOT crazy. Your pain is real. Don’t give up and don’t give in or get in your own way. Trust that there is answer just one office door away. It may take a lot of doors to open to find that right one but you WILL! I will continue to post through my journey with this disease and allow you a very raw perspective. I have felt called to share this and be brave enough to tell ALL! Any questions you have or thoughts as you read this feel free to comment or ask. I want this to be for others to learn and grow as I have.

 

 

Now what? Still waiting…

I have now gotten the following diagnosis at this point: Interstitial Cystitis, Migraines, Iron Deficient Anemia, Fibromyalgia, and whatever else they could add to the list due to just being symptoms. Where do I go from here? Somewhere I never thought I would. Counseling!

I began counseling because I couldn’t deal with my all of my diagnosis, my pain, and my stress of not being who I was just a few years before. Counseling helped me and truly lead me to a better place mentally. She helped me accept that taking medicine is okay if it helps and they prescribe it. She helped me see that those that can’t make it through our friendship having my health be a huge obstacle means they loved me conditionally. It was a successful time and I still see her off and on.

The next thing I began doing was something that took me 3 months just to decide it was okay to try. As a conservative woman, I applied for disability. Of course, after almost 6 months or so I was denied but I was so worried about how much my healthcare was costing our family; not to mention me quitting my job over this and losing a huge income. But, God will prevail…

The wait is almost over to meet the new Rheumy that I had waited what felt like years finally came. Shane took off work and we went in together. He drew lots of labs, did a very thorough exam and said he thought he might have some idea of what is going on. I couldn’t wait for his answer to be something a tiny pill would fix or even a diet change. Instead he said I do believe you have fibromyalgia but you have that well controlled. You have something else, some kind of connective tissue disorder, and possible a joint problem. “We will know more next week when you follow up and have lab results.”

Judgement Day

Tags

, , , ,

I was so anxious for the Rheumy appointment to get there so I could understand some of these very specific and unsual tests that were ordered. Ones that as a nurse I had never seen ordered. Again, with Shane by my side we walk in for answers.

Dr. Bell greets us kindly and sits down by his computer to pull up my electronic medical records (EMR). He already knew what was going on but took the time to review each lab even those that were borderline normal. He looks me in the eye and says “I think we have figured out what is causing your pain.”

My eyes bugged, my heart skipped and I had butterflies in my stomach. I had seen 3 doctors that truly felt it was the beginning of MS; but it was words only spelling bee members would learn. ANKYLOSING SPONDYLITIS (AS).

What? What is that? I knew from medical terminology that spondo was spine but what the heck? He then told me it is an autoimmune disease on the chromosome that activates in your 30’s usually. He said I was positive for the HLA-B27 antigen.

What does this mean now? How does this change things for my future? I haven’t had much of a life the last couple years I was thinking so is it just going to get worse? Why do all of these questions run through your head but you never ask the? He explains further that AS causes a lose of mobility in the spine (like bamboo spine) as they joints begin to fuse together on their own accord. Also, the larger joints are affected with this disease.

I immediately felt relief and shock all at once. Finally a diagnosis! Yet, it is lifelong and I hadn’t even gotten to the treatment part. My options for treatment were becoming just medicinal as I had done PT, massage, accupuncture, you name it to try to help. So, he prescribed Celebrex for me. Within a week I was up off the couch, even cleaned a tad bit. I could move around and not feel like I had an elephant weighing me down. My dose was increased quickly and so was my Rayos (an extended release steroid).

At this point in time the boys were starting Spring lacrosse and I remember it being such a cold weekend but I wanted to see them play. I hate missing things with my kids. I went, I stood, I sat, but I also cried that day. I cried for the reality that someday I might not be able to turn or twist or even walk due to this disease. Someday I may be so stiff in my spine I can’t travel. So, acceptance was settling in but Iwas still grieving along the way.

Hope

Hope is a feeling I had after I knew my pain might become manageable. Hope was what I wished for every day in finding out truly what was wrong with me. Why can I sleep 16-18 hours a day and never feel rested? Why do I struggle getting in and out of a car at age 34? Why does the thought of getting groceries send my anxiety through the roof (still does because it is so exhausting to me)?

I continued to see this doctor and still do this day. They have been amazing and truly do manage my pain the best they can. But, the doctor I am still waiting on at this point is my new Rheumatologist that claims he will treat fibromyalgia.

In the meantime, I still continue to see other specialists and find out more and more about other issues I have that are chronic. I see a Urologist and find out I have interstitial cystitis. Not just any IC but I had the lovely accompanying Hunner’s ulcer. These ulcers bleed and make your urine very bloody and this was a problem.

Sadly this was my 3rd Urologist so sometimes, like I said you have to be your own advocate. Go with your gut.

The first one saw me in the hospital but I was technically admitted for neurology issues but couldn’t pee for 8 hours so he had to consult. He wasn’t sure what was going on but said he could always do a scope in office. I waited to set that up because I was still trying to figure out why my whole body ached like the flu and my bones hurt to touch them. Finally, I made an appointment with his partner.

I arrived to the appointment for the cystoscopy (bladder scope) and that doctor checked the inside of the bladder walls. He didn’t take picture and only took a few notes. He verbally tells me at this appointment he sees the flat red spot that is probably the reason for blood but more than likely it isn’t much. If it is still there in 3 weeks will we biopsy it for cancer.

CANCER! I said “I have to wait 3 weeks to see if it is there still?” Hmmmm. That is not going to be easy. I walked out to my car, got in, and broke down sobbing with my hands lifted up toward the windshield; palms open, unable to see anything my eyes are so full of tears. I began to pray outloud.

God, please tell me what I should do.

I have gone to so many doctors and no answers.

What will it take Lord?

Where do I turn in this hour of deseperation?

I can’t have cancer.

I had tears caress my face the entire drive home that day wondering what I should do. I pulled off of the exit to go towards my house and IU Saxony is in very clear site. It is so close to my house and at this point I was keeping most of my doctors within the same health system except my Neurologist (which I changed twice) and my Pain docs. So, I call the scheduling line for Dr. McCabe. She is a Urologist at the Medical Buildings at IU Saxony. I told her nurse my story and how I was desperate for answers. I didn’t want to wait 3 more weeks just to biopsy something that may be cancer.

I know the Lord brought me to this Dr. because she worked me in the very next day. She listened to me complain, cry, and explain so many problems that I was having with my health. Never once did she cut me off. Never once did she act uninterested in what I was telling her; in fact she took amazing notes the entire time. At the end of the appointment I was set up for a cystoscopy again. Only this time for diagnostic purposes and do get rid of the “flat red spot”. I was then diagnosed with IC. (Interstitial cystitis or painful bladder syndrome)

I had the surgery with no problems other than fatigue and the usual. They got tid of my Hunner’s ulcer and began a six time DMSO (steroid rinse) in my bladder for 6 weeks in hopes to calm all of the inflammation and bleeding inside.

It helped! In fact I was feeling so much better about all of my bladder issues just having answers.