Showing posts with label hope. Show all posts
Showing posts with label hope. Show all posts

Wednesday, January 20, 2016

Sometimes it's Just One of Those Times

Picking a new team is scarier than scary. It's awesome though that my current Doctors are handpicking their replacements. (Yes, I still have not changed doctors since I moved almost 4 years ago; I just commute.) Look at me, sounding like we're putting together some elite task force, but what can I say, having the right people in place is essential for getting successful results... and as of right now, I need some good results.
I am currently and hopefully on the tail end of another migraine. The second in two and a half weeks, after not have one in months. I don't know if it is medication related but I cannot go back to dealing with these on a regular basis. Three days straight of intense pain and nausea, never knowing when the next will hit, is not living. It seriously zaps every ounce of positivity from my body... Not acceptable!!!
Which makes this so not the blog post that I've been mulling over for the past few days. I had every intention of posting a light-hearted, jab at myself over becoming a hermit since we moved and how much I actually enjoy life from my little piece of heaven.  I'm sure I'll feel like it soon enough. Sooner than later, I hope. 
Despite some strange medical issues, these last few weeks have been laying the foundation for a great 2016 in my business and personal life... I just need to figure out how to tackle the latest hurdle... Quickly!!!
I'm determined to make this my year of getting control over this. There is no other option!!!

Until Next Time...

Saturday, January 2, 2016

It Came in with a Bang

2016 definitely came in with a bang... and not the kind you would expect.  Our night at home was going along perfectly.  It was just the two of us sharing drinks, loading up on junk food, having the best 2 person dance party in our kitchen, and just talking... things that we rarely have time to do with the husband being gone so many hours of the day and our one day weekends spent catching up on projects around the house.  We thought we'd sit down and watch a movie since it was still so early and about an hour into it, I could feel my body tensing up.  It's a feeling I have felt way too many times in the past 4 years and was hoping it would stay right where it was and we could finish our evening but deep down I knew better.  By the end of the movie, my nerves were on full alert and my nausea was almost at full force.  I looked at my husband and said, "I'm getting a migraine, I have to go to bed now."

I've suffered from severe migraines now for about 4 years.  For about 2 years of the 4, I was getting them twice a week.  With the help of a neurologist, we got them down to once a week and finally after a year of trying different medications, once a month.  Back in September, I decided that I was done being loaded up on all these medications (that were starting to not consistently work) and that I wanted to start tapering off of them to see if the medications were actually even working anymore.  I read up on all the yuckiness of symptoms from tapering them off, got my prescriptions filled one last time and prepared for a rough month.  I ended up having to go out of town for a few weeks and realized that I didn't have enough medicine to fully step down and my doctor's office said that they needed to see me before they would refill my prescription again.  I was over 2,000 miles away, so that was not going to happen. So the crazy and frustration kicked in and I stopped "cold turkey".  Inside I was freaking out a little but I figured, I already suffer from migraines and Crohn's, it can't be much worse that either of those... and thank you God, other than feeling pretty off for a few days and some major dizziness, the transition went fairly well.  My body actually felt so much better not being on them.  My sleep wasn't based on taking something and praying for it to work... it felt weird realizing that I was actually sleeping better than I had been in a long, LONG time.  I was still having my daily morning headaches but no matter what we tried, that has been the norm for 4 years now.  Until NYE, (other than two "mild" and short lived migraines) it has been smooth sailing.

Let's just say that 2016 did not start like I'd hoped.  The shop stayed closed (even though I had plans to launch new merchandise), the lights stayed off, the bathroom stayed close, my water glass stayed full, the husband stayed quiet as a mouse (except to check on me), and after a failed attempt to get migraine medication down and broken blood vessels around both eyes from it getting lodged in my throat, I stayed in bed praying for even 30 minutes of sleep.  I've tried every natural remedy I've ever come across to get them to go away with no success and I tried almost all of them again yesterday to still no avail.  It took everything I had to not spend the day crying and to be honest, the only reason I didn't is because it would just have made my head hurt worse.  I wanted to be strong but I just couldn't find it within myself.  Here on the first day of the new year, I already felt defeated.  Completely out of my control, yet, I couldn't stop it from making me feel weak and broken.  It's crazy how much pain, of any kind, can consume you.  At midnight, I decided that I couldn't wait another 8 hours to try to take some medication again and I grinded up those darn pills and got them down.  The 2 year old on a Pixy Sticks sugar rush pounding on the drum set in my head has mellowed and he/she is currently lightly messing with the kick on the bass drum.  It's not over yet but I'll take it.  I don't feel human but I'm upright... and I'll gratefully take it.

It's good to remember that even though January 1st is the start of a new year, it doesn't decide what the rest of the year is going to look like.  Each day is a chance for a new start.  Some will be good, some will be bad, and some will be down right ugly, but the next day the sun still rises on a new beginning... and thank God for that!!!




Until next time...


Monday, September 15, 2014

When You Know It's Time to Speak Up

"If you think your little blog is going to help someone, then good for you."

Those are the words (in a sarcastic voice) that put a halt to my blog last fall.  They came from someone that I care about and also someone that I didn't think was even aware that I had a blog.  That one comment also brought a few things to my realization: one, that I was indeed being talked about behind my back (if my blogging was brought up); two, I had let myself care too much what another thought of me; and three, I needed to take some time to find my voice and direction again so that no one else's words would again be able to attach itself my soul.

Over this past year I have done a lot of de-cluttering in my life of anything that could bring me down or take away from my purposes in life.  I still have work to be done, I always will... it's part of being human (we're flawed).  Recently, I removed Facebook from my phone and iPad along with un-friending and un-following a few people.  I absolutely love seeing what my friends and family are up to, especially since I am still living three hours away, but I needed to get away from making checking it a thing I was doing out of habit (over and over again), getting my phone out of my hands, getting away from negativity, and feeling like I was giving more of my personal information away every time I was asked to update the app.  It's sad that we (I) use social media as a way to keep others "close" but especially for me, I cant stand to talk just to talk.  I know that may sound strange from someone with a blog but let me explain myself... When people talk to talk, it annoys me on a few levels: first, you can only talk so much before you start talking about others and eventually start gossiping; second, repetition, it's not fun to talk to someone when all you ever do is talk to the same person about the same thing over and over again; and third, I am more drawn to the story of something.  Don't just tell me that you work out every day, what you did today, what you got, what you want, that you are annoyed by this or that, that you hate life, that someone doesn't have to deal with what you have to, or your excuses; tell me why, what it does to you or how it makes you feel, how it makes you grow, how you want to overcome it or how it gives you hope or drives you.  I am interested in your story, your growth, your real struggle, your hopes, your goal, your purpose because those are the things that mean we are loving, growing, being compassionate, not comparing/judging, and LIVING!

In this journey of re-grounding myself to my purpose I recently came across this book Speak by Nish Weiseth. The front cover says it all, how your story can change the world.  I am SO excited to read it.  After only reading the Forward and Introduction, I knew I was finally ready to return to blogging.

Join me in this journey!  Let your story be heard!  Whether it be good or struggle, we can all grow, learn, change, find strength, and bond through each other's experiences.  Introduce yourself to me and tell me your story!!!


My Favorite Quote





Until Next Time...

Thursday, August 30, 2012

Imuran (azathioprine)

Here's some reading material on the new drug that my Doctor has put me on.  I highlighted a few areas of concern that I have. I have been fighting taking this medication for almost a year now but I just want to be healthy and live a "normal" life like everyone else.  I don't know what the future holds and this isn't the direction that I wanted to go... but I'm trusting that there is a reason for all of this and that everything I am going through has a purpose.

Warnings:

Azathioprine may increase your risk of developing certain types of cancer, especially skin cancer and lymphoma (cancer that begins in the cells that fight infection). If you have had a kidney transplant, there may be a higher risk that you will develop cancer even if you do not take azathioprine. Tell your doctor if you have or have ever had cancer and if you are taking or have ever taken alkylating agents such as chlorambucil (Leukeran), cyclophosphamide (Cytoxan), or melphalan (Alkeran) for cancer. To decrease the risk that you will develop skin cancer, avoid prolonged or unnecessary exposure to sunlight and wear protective clothing, sunglasses, and sunscreen. Tell your doctor immediately if you notice any changes in your skin or any lumps or masses anywhere in your body.

Some teenage and young adult males who took azathioprine alone or with another medication called a tumor necrosis factor (TNF) blocker to treat Crohn's disease (a condition in which the body attacks the lining of the digestive tract causing pain, diarrhea, weight loss, and fever) or ulcerative colitis (condition in which sores develop in the intestines causing pain and diarrhea) developed hepatosplenic T-cell lymphoma (HSTCL). HSTCL is a very serious type of cancer that often causes death within a short period of time. Azathioprine has not been approved by the Food and Drug Administration (FDA) for the treatment of Crohn's disease or ulcerative colitis, but doctors may sometimes prescribe azathioprine to treat these conditions. If you develop any of these symptoms during your treatment, call your doctor immediately: stomach pain; fever; unexplained weight loss; night sweats or easy bruising or bleeding.

Azathioprine can cause a decrease in the number of blood cells in your bone marrow, which may cause serious or life-threatening infections. The risk that the number of blood cells that you have will decrease is highest if you have a genetic (inherited) risk factor. Your doctor may order a test to see if you have this risk factor before or during your treatment. Taking certain medications may also increase the risk that your blood cells will decrease, so tell your doctor if you are taking any of the following: angiotensin converting enzyme (ACE) inhibitors such as benazepril (Lotensin), captopril, enalapril (Vasotec), fosinopril, lisinopril (Prinivil, Zestril), moexipril (Univasc), perindopril (Aceon), quinapril (Accupril), Ramipril (Altace), or trandolapril (Mavik); trimethoprim and sulfamethoxazole (Bactrim, Septra); and ribavirin (Copegus, Rebetol, Virazole). If you experience any of the following symptoms, call your doctor immediately: unusual bleeding or bruising; excessive tiredness; pale skin; headache; confusion; dizziness; fast heartbeat; difficulty sleeping; weakness; shortness of breath; and sore throat, fever, chills, and other signs of infection. Your doctor will order tests before, during, and after your treatment to see if your blood cells are affected by this medication.


 
What special precautions should I follow?

Before taking azathioprine,
  • tell your doctor and pharmacist if you are allergic to azathioprine, any other medications, or any of the ingredients in azathioprine tablets. Ask your doctor or pharmacist for a list of the ingredients.
  • tell your doctor and pharmacist what prescription and nonprescription medications, vitamins, nutritional supplements, and herbal products you are taking or plan to take. Be sure to mention the medications mentioned in the IMPORTANT WARNING section and any of the following: allopurinol (Zyloprim); aminosalicylates such as mesalamine (Apriso, Asacol, Pentasa, others), olsalazine (Dipentum), and sulfasalazine (Azulfidine); and anticoagulants ('blood thinners') such as warfarin (Coumadin). Your doctor may need to change the doses of your medications or monitor you carefully for side effects.
  • tell your doctor if you have any type of infection, or if you have or have ever had kidney disease.
  • tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding. You should use birth control to be sure you or your partner will not become pregnant while you are taking this medication. Call your doctor if you or your partner become pregnant while you are taking azathioprine. Azathioprine may harm the fetus.
  • if you are having surgery, including dental surgery, tell the doctor or dentist that you are taking azathioprine.
  • do not have any vaccinations during or after your treatment without talking to your doctor.
  •  
What side effects can this medication cause?

Azathioprine may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
  • nausea
  • vomiting
  • diarrhea

Some side effects can be serious. If you experience any of the following symptoms or those listed in the IMPORTANT WARNING section, call your doctor immediately.
  • rash
  • fever
  • weakness
  • muscle pain

Azathioprine or 6‐mercaptopurine for maintenance of remission in Crohn's disease
 
Azathioprine (1.0 to 2.5 mg/kg/day) used among patients with non‐active Crohn's disease is effective for reducing the risk of disease recurrence over a 6 month to 2 year period. Higher doses of azathioprine (2.5 mg/kg/day) are more effective than lower doses (1.0 or 2.0 mg/kg/day) for preventing disease recurrence. There is also evidence that azathioprine may reduce the need for steroid treatment which could help reduce steroid related side effects.  Azathioprine appears to be more effective than 6‐mercaptopurine but this may be due to the relatively low dose of 6‐mercaptopurine (50 mg/day) used in the one study assessing this drug.  The long‐term effectiveness of azathioprine and 6‐mercaptopurine is unclear due to the short duration of the studies (6 months to 2 years). Azathioprine and 6‐mercaptopurine appear to be slow acting drugs. They are associated with some uncommon but serious side effects. These include suppression of the body's ability to produce white blood cells (which fight infection) and platelets (which allow blood clotting to occur), inflammation of the pancreas and an increased risk of lymphoma. Patients who may benefit from this therapy include those whose Crohn's disease is chronically active or flares frequently. Azathioprine or 6‐mercaptopurine may also benefit patients who are dependent on steroids but have experienced steroid side effects, or for whom steroids no longer work. The choice to use azathioprine or 6‐mercaptopurine should be made after careful consideration of the risks and benefits of using these drugs.

Thursday, June 30, 2011

Blessed Beyond Measure

Getting up this morning I didn't particularly feel as if today was going to be a good day.  It's been a struggle for the past month to stay positive as I feel like I've got attacks coming from all sides.  Peace has been hard for me to find and the places that I usually ran to felt so far away.  I've felt secluded and unable to share what's going on with me because I don't want to remind people that I'm the "sick" one (as I heard myself being called by someone this month) or to become a topic of conversation in one of the little gossip circles around me that I want absolutely nothing to do with (I'd rather not know what's being said behind my back as is).  To put it simply, I'm drained.  I'd taken a few extra days off last week to clear my head but my plans fell through and I ended up stuck exactly where I was trying to get away from. By Sunday night I thought I was going to lose it... mentally or physically, whatever "flew off the handle" first.  All day Monday, I started planning my escape even if for no other reason that to bring myself sanity. 

Then it hit me... that first sense of peace. 

It wasn't the heavens opening up and it may sound silly to someone else but it was my first little bit of the healing that I so desperately needed.  I was standing in the kitchen after just getting home from waiting in my car for over two hours for my husband to get out of a meeting that should have been over two hours prior (while my groceries were sitting in the backseat).  The meeting didn't go very well (something that I'd been praying for different results for a long time) so needless to say it wasn't a fun car ride home.  Anyway, like I said, I was standing in the kitchen trying to get dinner done as quickly as possible just as I do every night in between the short few hours after I get home from work and my husband goes to bed.  Nothing out of the ordinary, the same job I do every night because according to someone, like it or not, it's my job.  Then the peace... my husband walks into the kitchen and says, "thanks for coming to get me today and for making dinner," then leans down and kisses me.  It wasn't much but it was exactly what I needed to hear at that moment.  Those simple words stopped me in my tracks and brought tears to my eyes.  I felt loved... the greatest of all gifts.

Today came the second blessing.  Like I said in the beginning.  I woke up this morning a little sassy.  There were still a lot of things weighing on me.  Yesterday was NOT a good day and I'd driven myself to pure silliness last night just to make it through.  Not things that I can go into because they are not my stories to share but all hurt me the same as if they were my own.  With that being said, I had a doctor's appointment this afternoon and due to my insanity lately, I hadn't gotten my blood drawn.  There was the issue of time but also that fact that I had two doctors requiring the same tests and then two different ones but from different clinics so I didn't know how I was going to manage to accomplish this without having to pay for one set out of pocket because of the duplicate test so I decided to just wait until I could figure it out.  Normally not such a big deal but today's appointment was with my hematologist... the blood doctor ;)  But Dr. L is a blessing on her own.  I wish she could be my doctor for everything.  She walks in the room today and asks me how I'm doing and I blurt out, "I didn't get my blood drawn."  She laughs and says, "Is that your big confession?"  Did I mention that I love her?!?!  Any other doctor in her profession would say, well what's the point of this appointment if I don't have blood to look at... but not Dr L.  She sits down and says, "now how are you really doing?"  This woman does not ask just to be nice, she expects me to tell her.  So I do.  All of the things that I have been holding back from everyone else in my life because she knows and understands what this horrible disease is doing to me on the inside and how all of the things on the outside truly make it worse.  She passes no judgement (she also counsels cancer patients after work and has told me that I'm welcome any time) because she knows that I am not looking for sympathy or to have my feelings held against me.  Then she tells me even though I'm not sure that the Humira is actually working that I look healthy for the first time in a long time and she's not worried that I'm going to collapse on her.  It means more than I can express and it gives me hope.  It's doctors like her that make living with a chronic illness bearable!!!

 Peace and hope... what more could one ask for :)  But wait, there's more!!!

Blessing #3 came this evening when I saw my husband walk through the door.  He was carrying 2 new sets of tools that he won today at work.  He was happy, I could tell, and that in itself is an unusual sight when work is involved.  As he sets down the tools he says, "I got a call from X today."  I immediately stop and give him my full attention knowing that this conversation could go only one of two ways... especially after the not so good meeting from Monday.  But as I look up, I see that my husband has a huge smile on his face and I know what he's going to say but I let him tell me anyway.  "Starting Monday I'm finally going to be a Journeyman,"  is all he says.  I'm still speechless, it's what I have been praying about for the last 2 years.  We don't know how it happened because this guy has been the #1 person stopping this from happening this entire time but it's finally happening.  I couldn't be more happy for him.  I give him double high-fives and a huge hug.  "So today's been a good day," I say to him.  "Today has been a great day," he replies.  That statement alone is almost another blessing in itself.

Peace, hope, and security.  What can I say, I'm blessed beyond measure!!!  In our darkest hour we learn that we are never forgotten, never forsaken, never alone. Take that grain of sand no matter how small and run with it, nurture it, watch it become beautiful again.

Well that's it for me tonight... it's injection time!!!