Finally after another day of calling I was able to get a hold of somebody who had some answers for me!  The nurse from the Sports Medicine Complex apologized for not getting back to me sooner and explained that since I did not have the testing done at their office, she did not have the full report, but did have the radiologist findings.  She informed me that everything on the MRA looks to be normal and doubt finally was able to leave my mind.  I shared that was great news but explained the concern of “now what” due to the fact I am still having tremendous pain in my leg.  She simply replied that once they get the results from my other tests, they will get back to me in regard to what our next step is.

Yeah, did you catch that? “After we get the results of your other tests, we will go from there”. My blood instantly began to boil, and mind you I am still wearing the heart monitor.  I explained my frustration with what a hassle this whole ordeal has been of me trying to get tests scheduled from their office.  I reviewed with her that I thought the doctor had wanted to do an ultrasound along with the MRA, however when the orders were sent to Covenant hospital, the only order they had received was for an MRA.  I also reviewed how I had even double and triple checked that I did not need an ultrasound or any other testing with the one lady from their office who had been working on my case and she had confirmed there were no other orders.

The nurse once again apologized and looked through her notes to find that it was actually an ultrasound and an MRI that I still need to have done.  Again while talking through my teeth, I asked why on earth I would need an MRI when I had just done the MRA. She went on to say that my x ray showed some bone lucency so the MRI will give them a better look at my tissue, bone and muscle whereas the MRA looked at my arteries.  Ugh, the thought of going in to that huge loud machine just makes me sick! I had such a horrific headache after the MRA and I must have looked rough because even Tim encouraged me to go lay down while he took care of the kids, and that never happens! 🙂

I asked what would be the reasoning for bone lucency and she quickly replied that could be from a number of things then moved on to say she will visit with the doctor about getting these orders sent over to Covenant hospital.

She again said she was sorry for the delay and I said I’m sorry your office is incapable of doing their job.  Ok no, I did not say that but can you imagine the earful my husband got after I hung up the phone?!  I called him once to let him know what was going on and then the next time I called him crying from this overwhelming sense of frustration.  Actually I don’t think he even heard a word I said because when I called him that second time he asked “why are you crying”…but still, it’s nice to vent out those frustrations whether he’s listening or not!  Plus, it makes me laugh now that he pretends to be so clueless at times…he tries to play the tough guy role but I know him and when he acts like this, it’s only because this is tearing him up inside as well. When I first met my father in law he warned me that Tim’s bark is worse than his bite, and these were the situations that proved him to be true!

So, here I am still waiting to hear back when the next fun filled round of tests will be scheduled. That God person really has a silly sense of humor doesn’t He?!

Ok so that was my original blog however a lot can change in 20 minutes! Shortly before 5pm Iowa City called and expressed extreme frustration with the way their office handled my situation! Long sorry short, I am now scheduled for an MRI and ultrasound on Tuesday in Iowa City. And yeah, kind of makes me nervous about how fast they are getting me in, especially when the nurse dodged my question in regard to the bone lucency, but hopefully it’s simply because they know this ordeal has taken way too long!

So soon enough I will get answers in regard to my leg! However!! The day did not end there. While talking to Iowa City regarding my leg, another message was left from Iowa City which I thought was just a message left as I was returning their call back. That was not the case. It was Pam, my cardiologist nurse. My doctor had reviewed the last scans and determined that my PA stents were indeed closing therefore she encouraged me to call her right away to set up another angiogram and ballooning to open the stents. First off I have to say the scans they reviewed were from October so my stents have been this bad for that long. Finally they figured out what’s wrong with me…but now I am faced to do this procedure all over again and I hate it.

Needless to say, the last 20 minutes of my day gave me answers yet forced me to face the ugliness of my disease. It’s never ending and sometimes frustration overtakes the willingness to keep pushing forward…but I do continue this fight. My family is outraged by this…why did it take over 4 months for my doctor to catch this? The longer my stents stay closed, the harder and more complicated my procedure becomes. I guess I look at it as just another day which sometimes is good and sometimes is bad. So I guess I wait until next week to get answers for my leg and then schedule my fabulous angiogram and ballooning to open my stents.

But on the bright side, the MRA was negative, I know to pick some 80s music for my next MRI and I am able to visit with one of the best brother’s in law and his family tonight! Oh and I was able to ship my heart monitor back off to Iowa City so I guess it is a win day after all!  Happy Friday!!

I met with my cardiologist today and unfortunately he did not have any answers for me. I reviewed the symptoms I have been having including the shortness of breath, head/chest pressure, heart palpitations and extreme fatigue. He also looked at my fingers and briefly looked me over for any signs to indicate that my SVC might be closed, however everything appeared to be okay and he said nothing about my fingernails.

The nurse Pam, that I’ve gotten to know well, and I just think is so awesome, simply looked at me and said “you have a lot going on, nothing overly extreme, but a lot of things building up! God love ya” then walked out of the room.  What does that mean?!

The doctor and I, along with a few med students, reviewed my lab work and he assured me the results were “to be expected” with my disease however we will continue to monitor the levels since they are creeping up. He pointed out that my angiogram in April will also help to determine if my stents in my pulmonary artery are still open to rule out that being a cause for the way I feel. Really? April?

He did say he has some ideas on other possible testing to be done such as another ct scan, however he wanted to get together with my pulmonologist to discuss my “situation” first. This did make me feel better knowing that he said he would also consider moving my angiogram up if needed, but just wanted to touch base with my other doctor.

He went on to remind me that while stents can improve my symptoms, they are not perfect. He “understands” my symptoms and agreed by what I am telling him, and the way I am feeling, my FM is in deed still progressing but reiterated talking with my lung doctor to get his thoughts as well, in regard to our next steps.

While I didn’t get any answers that I was hoping for today, I do have the luxury of wearing a heart monitor for the next 48 hours to try and determine some reasoning behind my symptoms I’ve been experiencing, especially the heart palpitations. And, I must say I feel sorry for the men who have to do this test due to all of the wires taped to the chest.

The nurse first cleaned the areas with alcohol swabs, then “roughed” my skin by taking a sand paper type of material so that the pads would stick better, followed by sticking the electro pads on.  As much as I have gone through with all of my tests, and angiograms and surgeries, I will admit, this little procedure did sting.  She referred to it as feeling like a kitty scratching me and I wanted to reply “this is why I don’t have cats”.  Needless to say, I will wear this for 48 hours and I am to monitor and log any activity I am doing when I notice symptoms.

So, what’s the first thing that happens when I get home?  Our oldest daughter Skyler, jumps out from behind the door and scares me, as this is a regular habit of hers to see how far I jump, how loud I scream or what I yell at her!  She then saw the monitor clipped to my pocket and asked what it was so I explained the reason for the test.  Skyler did an uneasy giggle and reassured me that she would not do that again, at least until the monitor was off.

As far as my MRA, I did call my orthopedic doctor, however, he had been in surgery all day yesterday and today so I was informed that I should hear something by Friday.

So, again, no answers but more tests and more waiting.  As much as I know it is to be expected with appointments just resulting in more testing, I am so thankful that the doctors are now taking me serious, believing me and really trying to figure out how to help me.  I love the fact that my heart doctor and lung doctor work so well together and keep in communication regarding my “case”.

So, I will be waiting about 2 weeks for these heart monitor test results before I hear from my doctor which means other than hearing back on my MRA by Friday, looks to be an uneventful week…and that’s always nice!

Thanks for all of your prayers, encouragement and kind words.

After more confusion and a rough start to the day, my MRA is done! When I got to the hospital as scheduled, I found that no orders had been sent over for lab work so I was shown straight to the radiology department, and I knew this wouldn’t fly. The radiologist did confirm that I needed labs done so he was able to write an order. I was then sent over to the lab to get my blood drawn then back to radiology where I began to prepare for the test. I triple checked that I was able to do an MRA even though I have 8 stents in my chest as everyone I had talked to regarding this procedure did not seem very confident that it was okay. I pulled out the papers I carry in my purse regarding my stents and from reviewing those papers, the nurse was able to confirm that I “should” be ok…ummm, I don’t want to hear “should”….tell me it IS okay!

I got that fabulous blue gown on and walked through a door in the shape of a huge stop sign that said STOP, and again reviewed the dangers of the test and all of the metals that should be removed from my body. This did not appear very comforting to me. The nurse inserted my IV, and just like 15 minutes before when I had labs drawn, and like any other time I get poked for IVs, labs, or whatever, they have to use extra bandages due to the fact I’m on Plavix and bleed easily. I was then placed on the long cold table that would eventually slide me in and out of the machine.

They again reviewed how the procedure would take place and I was then given headphones. After given the choice of music, I opted for Christian contemporary as I always listen to 101.9 however, I found myself quickly regretting that I did not pick some type of 80s music. While I love 101.9, sometimes the music is hard for me to listen to, especially when I am faced with the struggles I am dealing with.  The music is encouraging and I know God is with me but at the same time when I hear the words of much needed reassurance, which always comes at the most appropriate times, I can’t help but cry.

One of the first few songs that came on, I had never heard before but it was called “I am Not Alone” by Kari Jobe.  Again I was reminded that God is with me and I didn’t need to be anxious about this test as I listened to the lyrics  “Lord, You fight my every battle and I will not fear”, “You’re my strength, You’re my defender, You’re my refuge in the storm. Through these trials You’ve always been faithful You bring me healing to my soul”.  Yes, I got emotional and knew that was God’s way of reminding me that He was with me in that machine and everything is going to be okay.

I was able to get through the procedure which took well over an hour. I tried asking questions but this nurse was not going to leak any information and simply said my doctor will call me this afternoon or tomorrow with the results.

So, here I am again, waiting, for that all too familiar phone call from the doctor to determine what next challenges I might be faced with. Tomorrow I should hear the MRA results, as well as talk with my cardiologist about all of the abnormal lab results that I have been getting, along with my increased symptoms of extreme fatigue, chest pressure, extreme headaches and heart palpitations.

But hey, tomorrow is a new day right?! 😉

Ok, so surprisingly I have gotten a tremendous amount of positive feedback regarding my blog so I will try to keep up to date with it.  Like I said, I do not want anyone feeling sorry for me because I truly am thankful my situation isn’t worse, and I truly am thankful that God has blessed me with the life I am living. The challenges I have faced have given me strength, determination and courage to keep pushing for answers, not to mention, I truly found the man that God intended me to be with! Without Tim, I truly believe that I would have lost this battle years ago.

I want to give people a true sense of what it’s like dealing with a rare disease that so many know nothing about.  I have had several family members and friends call me up crying that they were sorry they have not been here for me or they were sorry that they truly did not understand the severity of my disease.  They have also called saying my blog is hard to read because it makes my situation “real” and “raw” which I can definitely relate to, bc if I don’t talk about it, the truth is I am fine then!!

First off, don’t be sorry!  I know I use my sense of humor to deal with my sickness which I also know tends to divert people from the severity of my disease. The fact is, yes, this disease is horrible and sucks the life out of me on days, but I don’t want attention because people “feel sorry” for me.  If anything, I want people to say “wow, look at the will this girl has, and the “faith this girl has”.  I want people to see me for the obstacles I have overcome!

So here is an honest night of what living with my disease is like.  Remember that flu bug everybody is so concerned about?  Well, the last week I have been off and on with just not feeling right, however unlike “normal” people, I can’t fight the illness off that fast. For the last several days I am waking up in the middle of the night with EXTREME chest pressure and headaches, only to be accompanied by the never ending cough.  This cough leads me to getting, what I feel like is, “deathly sick”.  I am up all night coughing (yes, my FM friends, with blood but I will spare you details), getting sick and the head pressure is so intense that I just dread the thought of turning my head to reposition myself.

When I first met Tim he did not understand why I would avoid anybody who was sick, people are sick everywhere so what’s the big deal right?! HOWEVER, with my crappy immune system, I swear I can get sick just from looking at a person who is sick. Needless to say our daughter has had influenza A within the past couple of weeks and then our son had a double ear infection with a nasty cold.  While I know I should be taking precautions, and I do, I am not going to let this disease keep me from being a mom…..therefore when my kids are sick, I WILL take care of them, and 99% of the time I get sick regardless of how much I Lysol and wash my hands.

So here I am stuck, my body is fighting extreme fatigue yet laying down makes me feel worse so I can’t sleep. Tim leaves me to go do chores, with that look of doubt in his eyes, wondering if he really should be going. Nights are the times when I find myself reading my devotional, working, or writing in my journal…which is now my blog. These are the nights that I have to be honest and say that I hate this disease.  I mean, you have all had the lingering cough after a sickness that won’t go away, but that cough is a guarantee for me regardless if I’m sick or not, and the days I am sick it does make me question if fighting this disease is really worth it, and trust me I ask over and over for forgiveness of me thinking this way, but the thought still manages to creep in to my mind.

The funny thing about having faith and believing in God though, is that He puts whoever I need right in front of me when I need it the most.  Tonight was a bad night for me with getting sick from the extreme coughing and when I really started to get frustrated, Asher came over and flashed me that smile of his, one kind of like daddy, and hugged me and held on to me, not wanting to let go. This is when I again realized that yes, as horrible and miserable as I might feel, my kids…and my husband are worth me fighting this nasty disease.

SO, the sickness, the cough, the chest pressure the head pressure… this is a bad night but tomorrow is always a new day, and a new beginning. Don’t let my sense of humor fool you, but let it bring awareness to this monster I am fighting inside. “Just because I’m smiling doesn’t mean I’m happy, it means I’m strong “. My mom always said God blessed me with a sense of humor to get through the trials in life and I am thankful for that because without laughter all I would do is cry, and I CHOOSE laughter.

Again, I am not sure where God is leading me with all of this but I have had tremendous amounts of emails, encouragement, support and” thank you”s for sharing my blog so I will try to continue with it.  This is so completely out of my comfort zone but again, I have felt for several months that God was tugging at my heart to share my story so I am putting this out here for you all to see.  A lot of times I find myself thinking “who really cares” and “why should I do this”, but the overwhelming emails and responses have shown me that I am a voice for others, so I will continue on.

This week will have a lot of appointments once again to hopefully determine answers for me. It’s funny how I pray for something to show up on the test results…simply so doctors believe how sick I am.  It’s actually bitter sweet because I pray for the tests to show something but then the doctors don’t know what to do with me when I do get the bad test results back.  I just keep trying to remember that God is good and regardless of what I find out, in the long run, I will be free of pain and suffering so I can’t really lose no matter what the doctors say right? 🙂 This is the only hope that we can hang on to!

Tuesday is my MRA and Wednesday I meet with my cardiologist so we shall see what the week holds soon enough! Please keep me in your prayers and I have confidence that this will be a week of answers!!

I have been wanting to find some way to bring awareness to this horrific rare disease that I continue to battle and one way I thought that might be possible is if I start a blog.  My goal is to bring to light the severity of Fibrosing Mediastinitis, what it’s like living with such a rare disease as well as to show you through my journey, the struggles we go through just for doctors to listen to us and take us serious, all while keeping it uplifting and encouraging to others.  Yesterday, however, is one of those days where it is hard for me to find a positive in the events that had occurred over the last 12 hours.

It started with a follow-up appointment for my diabetes, nothing out of the ordinary, just a regular checkup.  I should have known when a peanut butter cup fell out of my purse in front of the diabetic nurse, it would be all downhill from that point on 🙂
While there, I decided to touch base with my endocrinologist regarding my leg to confirm that she did not feel it was any type of neuropathy due to my diabetes. She again stated that she still felt my leg pain was due to vascular concerns.
As she was listening to my heartbeat she also noticed my fingernails and came to the conclusion that my fingernails were another indicator that I do in deed have some sort of vascular issues going on. I fought back the tears wondering why my cardiologist would not acknowledge this.

The highlight of my appointment however, and I say this sarcastically, was when she went to review my normal blood work that I have drawn every couple of months for my diabetes, she found that the hospital had sent her a wrong report.  She went on to say that it was a test for congestive heart failure and my heart sank because I knew the results were meant for Iowa City.  This last week has been a nightmare trying to get my MRA, a test to look at the veins and arteries in my leg to determine any blockage,  as well as some other  tests ordered by my most recent orthopedic appointment.

I had planned to do all of the testing at Waverly hospital only for them to say they were not equipt to do the MRA so I was sent to Covenant Hospital which took almost a full week for the order to get switched due to so much unnecessary confusion.  The Waverly hospital had also told me the doctor had ordered more lab work and tests but once all of the orders got switched to Covenant, the only order they received was the MRA.

Regardless, I told her that must have been one of the lab orders Iowa City had requested.  I was given the report and we briefly went over the results as she did not want to say too much given this is not her specialty.  I looked on the sheet to see that my results were marked with an H indicating that my levels were higher and slightly over the normal range.

Trying to keep my composure, I was able to make it out to the car, buckle Asher in his seatbelt and there I sat in the driver’s seat with my head down finding myself to be crying once again.  The last several months have just been building up and I am getting so tired.  Just find the answers and help me, why does this have to be so complicated?!

I went home to email my orthopedic doctor regarding my labs however they were quick to respond that they did not order the test but pointed out that my pulmonologist had ordered it. This led me to contact yet another doctor trying to get everything all straightened out.  I had already done this lab work for congestive heart failure yet these results were even higher this time.  What are these doctors not telling me?

Anyway, did you follow all of that?  Confusing right???  This is just another day of dealing with too many doctors and a rare disease that so few doctors know so little about.  The simplest tests can take weeks to arrange and are usually only ordered after I have went in a circle of doctors passing me from one to the other and me not taking “no explanation” for my pain.  I want answers! While the orthopedic doctor told me I was “out of his range”, he is at least ordering tests to try and find some of those answers. Yet here I sit playing the waiting game again and I can’t help but get nervous when the waiting game is in regard to the condition of my heart this time.

As if that wasn’t enough for the day, my phone rang and it was Covenant hospital explaining that the MRA that was scheduled for Thursday, is such a rare test that they wanted to push my appointment back to February 3rd as this is when the radiologist who specializes in this testing would be in. This would allow him to be there during the procedure to make sure he is getting a good look at what he needs to see.

Ok, I like to think I handle myself pretty well overall when being in some of the situations I’ve been in, but sometimes enough is enough.  I did get a little snippy with her and said that was fine but followed up by saying I have been dealing with this extreme leg pain for over 5 months, and yes, I actually said “if I lose a leg I’m going to be pretty pissed off”. I’m to the point now where I’m embarrassed and can laugh about what I said, and I did apologize which she of course simply replied that she “understands my frustration”….another typical line I hear that only indicates they have no answers for me. I was able to refrain from saying anything more and simply thanked her for the call.

So that was my morning in a nutshell, fun right?!  As of now my MRA is scheduled for next Tuesday then I will see my heart doctor on Wednesday and go from there.

I also need to acknowledge that we lost yet another member from my Fibrosing Mediastinitis group the other night.  Gary was one who also had welcomed me when I joined the group and his posts were always so inspiring because no matter how bad of a day he was having, he always praised God for the life that he was living…and like Dave, Gary always made sure to encourage and let us know that he was holding us up in prayer.

When I joined the FM group years ago, my symptoms were very mild however Dave, Gary, Rick, Tricia and Gina all have a special place in my heart as they have all been around since I was diagnosed. I know they have no idea what an influence they have had on me because I was quiet on the site and did not post often.  I did however read everything everyone wrote and I laughed, I cried, I was inspired by the determination. I have gotten to know a lot of wonderful people through this group who impact my fight more than they will ever know.

With the loss of both Gary and Dave, I find the negative thoughts creeping back in to my mind when I was first diagnosed with a ten year prognosis…and I am going on 13 years. I have always considered Dave and Gary to be some of the “go to” men because they always had answers either from research or personal experience.  And now we have lost two of our dearest within 10 days apart causing the reality of this disease to be thrown right back in my face.

This disease is a silent killer and even worse, all of us look normal and healthy so we are put in a position to force doctors to listen to us and to help us.  Even now at the age of, well, now that I’m older 🙂 doctors still don’t consider heart failure or strokes to be even a possibility from just looking at me because I look healthy, like a “runner” which I’ve been referred to so often, which is far from the truth, haha.

Yesterday was one of those days. And as hard as it is, I wiped away my tears and reminded myself that God is good and He is going to get me through this.

Mom pointed out today that Gary had the same quote on his Facebook wall that is similar to what I have hanging in my kitchen “When life sends you storms learn how to dance in the rain” I sure am thankful that I love to dance 🙂 I was blessed to be able to spend another day playing with my kids, okay we are all sick but I had a day of cuddling and loving on my kids, I guess the day wasn’t so bad after all.

Please keep Gary’s family in your prayers as they deal with the loss of such a great man  but like Dave, hopefully Gary’s family can also find comfort knowing how many hearts he touched and how he is with our amazing God and no longer suffering.

Couldn’t resist wearing my favorite shirt “Farm Girls Have Nice Calves” while doing a series of tests to determine what is wrong with my leg.  Most likely I will have to wear this shirt Thursday as well when I do the MRA 🙂 I have to make the most of my situation and Tim is nice enough to just smile, shake his head…and take the pictures!

The other night Tim and I celebrated 6 years of marriage and thankfully this celebration turned out better.  Last year, while the recent acknowledgment that my disease was indeed progressing was hard enough for me to deal with, it also forced Tim to think about what would happen if someday I really was not here for him and our family. It also meant uncountable numbers of appointments which in turn also meant more hospital bills.

Last year on our anniversary the build up over the last few months had gotten too much for either one of us to bare so we reached out to our pastor as we knew if our relationship was going to survive, we needed to take action.  This made such a huge impact on Tim and me as we were both able to get things out on the table in regard to all of the stress that had come crashing down on us.  The truth is as stressful as those few months were, we would soon find out that was only the beginning of what would be another tough year to come.

Tim and I were able to change how we handle the stress and daily grind of our life, not to mention being able to come to terms with my illness because we were finally able to acknowledge that God is in control, not us.  Yet, shortly after, Tim lost his contract with the farmer who was keeping our cattle operation running full and consistent, therefore taking away our major source of income.  This led to Tim having to get a fulltime, third shift job, on top of running our cattle operation with a new supplier although only running our farm at half of what he normally had been running it.  Tim now is working the hardest he ever has only to make half of what he made when the operation was originally running full speed. I hate this because he averages 3 hours of sleep….on a good day.  I often think “here we are worried about my health and he’s the one killing himself with so much work on such little sleep”.

But of course the struggles couldn’t end there.  I have had new symptoms of my disease flare up which again is leaving the doctors in question as to what to do with me.  I have been running tests to determine my likelihood of having a stroke, a heart attack and congestive heart failure. I also have extreme pain and numbness in my right leg so of course this means me going from doctor to doctor trying to figure out the root of this problem as well. I have been dealing with this pain for over 5 months. I have tried physical therapy and done test after test only for them to once again go back to thinking this problem is due to my vascular system being so messed up.  This week will bring yet more testing and an MRA to determine the results…at least I hope so.

Looking back I do really feel that if Tim and I wouldn’t have reached out for help when we did that the year would have killed our marriage. I believe that the overwhelming stress of the cattle operation shutting down for a short period, Tim working all day and all night,as well as all of these new health symptoms, would have sucked up our hope and we would have been swallowed by the misery that seems to fill our lives. And yes misery is a strong word, but an honest word of how we had both felt at times.

We are now finally able to recognize that while we think things may be falling apart, it is actually going to lead to something even better so we are able to say “ok God we might not know what You are doing but we trust You”.  Tim and I are amazing together but that one argument made us take some steps that we probably wouldn’t have attempted, which has led us so much closer to God, as well as finding a new sense of peace that everything is going to be okay when we are faced with new struggles.

I am just happy to say that I have an amazing husband who has supported me and loved me when I am sick, has encouraged and lifted me up when I feel like a worthless wife who just contributes medical expenses or can’t even cook dinner some nights due to such severe fatigue but especially when I take my frustrations out on him, he is able to forgive me. Don’t get me wrong though, there are still times when Tim doesn’t fully understand my illness and basically just tells me to “buck up” so that’s when I want to punch him but I refrain from doing so…hey we’re not perfect 🙂

Overall we have come a long way and while I still hate my disease I can see how God has used it to shape me in to the person I am today. My relationship with God today is stronger than it ever has been. I can also see what a better man Tim has become and the transformation God has done on him is amazing. God is good and His love for us is even greater.

Happy 6 years to my amazing husband and looking forward to seeing what God has in store for us this year. Well this blog should make up for me not getting him a gift 🙂

You know that feeling of waking up in the morning with a pulsating headache and no recollection of what you did the night before only to see the notifications on your phone regarding comments or texts you sent but have no memory of? Is that not the worst feeling as you hold your breath while going through your messages PRAYING you didn’t say anything too foolish or even worse, reach out to someone you would normally cringe at the thought of when sober?! Well this is how I woke up this morning and while I wish I could say it was my own doing from a crazy night of drinking, I am happily married and the mother of four kids so that is not the case. This is one of the symptoms from my FM that I have been dealing with for the last several months. Normally the groggy feeling and head pressure would indicate that my stents in my superior vena cava are closed but that has not been the issue this time. The headaches are more frequent and the “hangover” feeling is happening just about every morning. I wake up literally confused and not remembering what I did the night before. Tim, my husband, will often joke with me by making the night sound a lot more exciting than the fact that we really just flipped through Netflix for an hour before going to bed with nothing accomplished for the night.  Oh and how can I forget the drunk messaging.  I am drunk texting or Facebooking…without being drunk!! Ok, in all reality though it’s the little details that I tend to forget so no worries, I’m not going to forget I have kids and just take off leaving them somewhere, even though at times I might feel like doing so….but that’s a whole other blog.  These memory issues in the morning and fogginess throughout the day is due to the lack of oxygen to my brain and nights tend to be the hardest on me. I have just skimmed by on passing the oximetry sleep study which measures to see if my oxygen level drops at night however since my results are to be considered passing doctors do not want to provide any type of intervention at this time.

This blog stuff is completely new to me so I am still trying to figure out how much of my life I am willing to expose for everyone to read. Regardless of what I do share I am not doing this for sympathy….I am doing this for awareness and understanding. A lot of times when I tell people what I am dealing with I usually follow up by saying there are a lot of other people worse off than me so I can’t complain and I do really feel that way however the recipient of this conversation looks at me questioning how I can say that because from what I just told them, my situation is pretty bad. I don’t like attention but I want others to recognize I am sick and do have limits and some days are harder than others. I am stubborn and do not like my illness to hold me back so I continue to push myself to the limit. I am determined to not let this disease get the best of me and while I might push with full force that does not mean this is an easy battle for me, it simply means I am not giving in.

And finally, I will admit I’d rather have to deal with a typical hangover verses my “hangover” because that is an easy fix….just stop drinking…I mean seriously, I live with a hangover just about every day…why on earth would anyone self inflict this type of misery on themselves!! 🙂