Off

1. I’ve been receiving PROCRIT injections for a month now. They have truly helped my blood pressure stay up. However, for 3 days after the shot I have flu like symptoms and vomiting. Fever, chills, the whole shebang. I don’t want to tell my Dr because then he may take it away. I want to tough it out to see how this will improve my quality of life long term. 

2. I’ve been dealing with more stress this last month than I have had to deal with in a long time. I lost my fiance. I lost my future. I lost my sense of belonging and my sense of “home.”  I now have zero sense of “home.”  My son and I moved in to an apartment at a college campus. We are sharing one bedroom and one twin bed. It’s super small. I had a futon. Fiance said it belongs to him. Fun times. Nothing feels right anymore. Everywhere I turn something is messing up. I’m “off”. Everything in my universe is “off”. I don’t know how much longer I can go through this. I feel really very alone and I just don’t think it’s going to get any better. 

3. I may not write here anymore. I have no need to, really. Everything has fallen apart. The purpose of this blog was to document a journey. It doesn’t feel as if there’s a journey any more. Just moments in time. I’m just pushing through, minute by minute. I really am praying I get through this. My son needs me. 

Over

There’s no funny meme today. No making light of the situation. I didn’t get my shot. The idiot Dr doesn’t understand that the hemaglobin falsely rises when there isn’t enough blood volume. He refuses to give me the shot with a hemoglobin over 13. It’s over. I have literally zero chance at getting better. I lay here in bed and cry as I write this. Every hope I had of any sort of future is gone. My fiancé dropped me. My family doesn’t want me. I’m 32 years old with zero chance of getting out of this situation. I’m weak. I’m tired. The fatigue is overwhelming. I can’t stand without my heart rate making me feel awful. My blood pressure is stupid low when I’m not in a moment of stress or nervousness. I am simply not functional. Even more so, I’m not useful. The person I loved and hoped would help me through this gave up on me. The only reason I’m even here at all is because of my son. Honestly though, what good am I to him if I can’t even function at a normal level? What have I shown him about life? I feel so incredibly guilty for dragging him through all this with me. I feel awful for choosing a man that gave up. I’m beyond depressed at this point and I don’t know if anything will ever change. Thanks to everyone who gave a shit. It means something to me. It truly does. I’m just so over it all. 

Just an Update 

Paperwork got screwed up and the Procrit got shipped later than planned. It’s now at the hospital waiting on me. I have an appointment to get my first shot tomorrow. Guess what? It’s snowing. A LOT! Looks like I’m going to have to reschedule. All this waiting and praying and hoping and trying….and I’ve got to wait some more!

The Provigil doesn’t give me as many side effects if I only take half of it. Unfortunately, it doesn’t help with energy as much either. I still refuse to give up on it. I think my body will adjust. It just has to!

I’m currently working on finding a place for my son and I to live. That’s why I haven’t been writing much. I’m literally stressed to the max about it all. I need a safe place that I can afford. That’s impossible without a roommate. Fortunately it seems that God has been looking out for us. There’s a few people he has brought to us at the perfect time, and I’m so thankful for His unfailing love. Even when I think He isn’t there anymore, He shows up just to remind me He is and that He loves me and my son. 

I know I should not worry about anything. I know everything will be alright in time. It’s just so hard, especially with a child. It’s hard when I feel defeated. It’s hard when I feel alone. I just have to remind myself that I am never alone, and that I just need to take a step back and BREATHE. 

Everything is coming together as it should. Weeks ago I said I wanted the chaos to end. I feel it is going to. I feel that certain people and situations have been removed from my life to allow for growth and healing. For once I’m excited about a future, even if it does involve being dizzy. 



Not feeling very “pro” Provigil

IMG_4876

I finally took my first Provigil this morning. Within the first hour I felt a spark of energy. I was able to go downstairs & make breakfast for my son. I was able to shower without feeling dizzy. I was feeling hopeful.

Then it happened. My heart started racing. I started sweating. My stomach started cramping. Within minutes I went from hopeful to helpless. I ended up laying in a fetal position on my floor with a heart rate of 140. (I know that isn’t high for some of you gals with POTS…but for me…it’s hell.) Anything higher than 130 & I’m feeling like I’ve lost all control of my own body. I’m sweating. I’m freezing. I’m shaking. I’m dizzy & nauseous.

IMG_4875

So, in a state of panic, I took a beta blocker. I have been off that pill for over a month! My Dr said I could stop it if I didn’t need it. I was so proud of my body for NOT needing it anymore. So much for that.

I have a feeling that the beta blocker and I will be BFFs again. It’s no deal, in the big scheme of things. I guess I’m just disappointed in my body. I want it to respond better and more appropriately to medications that are meant to help. I want it to feel energetic without a crazy heart rate. I want it to work!!!!!

Overall, I did get the desired result from the Provigil. I got energy & I felt less fatigued. I could have done without the embarrassing stomach issues and scary heart rate. I’m just sayin’.

Good news!

IMG_4820

Johnson & Johnson has APPROVED my request for PROCRIT!!!!!! I have been approved for an entire year!!!!! Their only stipulation is that it must come directly from them, which means I have to wait for the shipment to arrive at the Dr office. I will most likely get my first injection by next week!

Also, I got a phone call this morning from my Neurologist’s nurse. She stated that my Dr has sent in a prescription for Provigil, and that my insurance agreed to pay for that (since they won’t cover Nuvigil).

IMG_4826

I can’t believe that by next week I may actually be feeling less fatigue and dizziness. I was beginning to lose hope and now things seem to be turning around.

My relationship is over but my health may be getting better (at least symptoms may decrease). It’s sad to me that when I needed someone to be there emotionally for me during this difficult time, the one person I wanted couldn’t do that for me. Now I may have a chance at life again, and he won’t be there to live it with me.

Regardless, I have a CHANCE at LIFE….I’m not going to take a minute of it for granted.

Chasing a dream

IMG_4762

I have spent so long chasing a dream. Every argument I ever had with him ended with me saying, “I just want affection.” Looking back, there have been a multitude of issues in our relationship. He’s very rigid in his thinking. I am most certainly not. He seems to lack basic understanding of my condition. I seem to lack basic understanding of him. Even still, if I had a hug or a touch or some kind of affection from time to time, I think I could have tried to save this. I would have had something to hold on to.

He always made excuses for why he wasn’t showing me affection. He’s just overwhelmed by everything else. He just needed time. He “tried” when we first got together and I pushed him away. Whatever the reason, there was always something that prevented him from doing the one thing I needed.

God knows I can’t use the word “control” around him. He really gets angry when anyone suggests he’s trying to control anything, but I think that’s the real issue.

It is truly a sad situation. The worst, actually. I have screwed up so much in my life and thought for once I had made a good decision. I thought we would last. I thought I had someone to stick with me through this illness. He’s just not strong enough. Or even worse, he IS strong enough and just doesn’t want to do it anymore.

Today is a new day and I will start it with a smile. I’ll do that for my son. On the inside though? On the inside I’m crying and I can’t seem to stop.

IMG_4759

It’s over

IMG_4699

I received a certified letter from my insurance today. I had to drive to the post office to pick it up. I had to sign for it. I thought it was going to be great news. I was wrong. They are refusing to pay for Nuvigil. That was my one chance of feeling less fatigued through the day. That was my one chance to have some sort of quality of life with some independence. Now, it’s over.

My fiancé and I have broken up, officially. It has been a long time coming. I knew he was growing weary as the time passed. I guess at this point I must focus on working hard to make any little bit of money I can through babysitting so I can take care of myself, my son & my dog.

I’m disabled. I can’t work 40 hours a week, like I used to. I have a chronic illness. I’m not expected to get better. I have zero energy to deal with this. I have zero ability to cope at this point. For now, I’ll just focus on taking everything one minute at a time, and pray that God gets me through this.

Finding purpose

irrelephant

So, what is my purpose?  This is something I have been asking myself for some time now.  I used to think my purpose in life was to help everyone I met.  It has recently been made abundantly clear to me that I can help no one right now.  Life has slowed me down.  I stay in the bed or on the couch 3/4 of my waking time.  This cannot be good.  Between my blood pressure issues, my brain fog, dizziness, fatigue, and my increasing Depression, I am in a rut!

Perhaps it is time to focus on me.  God knows I’ve been accused of being selfish for years.  Now, maybe I really need to be selfish.  I need to take care of me.  I need to look at myself in the mirror and feel something more than disgust.  I need to love me.

The reality is this: No one is going to fill this void.  I have figured out that no amount of begging for hugs or cuddles or anything else is going to get them.  Even if I did get those things, I may still feel it wasn’t enough.  This is not just about this progressively debilitating chronic physical illness (which does seriously suck, by the way).  This is about something deeper. This about finding my purpose and appreciating who I am, regardless of who does or does not need or want me for “me.”

dog no idea

I started this blog thinking I would journal about my physical chronic illness.  I’m finding it difficult to write about that with all the noise in my head from everything else.  I’m starting to accept that I will probably always suffer from Dysautonomia.  Something deep down says that there are more pressing issues at the moment.  I need to work on my emotional wellbeing.  I truly believe that’s what the Reiki is going to help me with.

I am consumed with guilt and fear, which in my mind is far more harmful than any physical illness I have.  If I can heal my emotions, I can better cope with the reality of my declining physical health.  Also, some of my physical symptoms may be somewhat alleviated (stomach issues, panic attacks) with a healthier emotional state.  The mind/body connection is very interesting to me, and that is what I intend to focus on in the next while.

After all, being trapped in this dysfunctional body is not a sentence to life without joy.

Still waiting

IMG_3965

I’m still waiting to hear back from Johnson & Johnson about my chances of getting Procrit. I was supposed to hear something by last Friday. Today is Wednesday. I am going to hope that means, as my nurse put it, that “someone is scratching their heads over this” and I may actually still have a chance.

I am also waiting to find out about Nuvigil. The insurance company has yet to change their minds after an appeal was sent in to them by my physician.

I feel mentally, emotionally and physically exhausted. I feel a tad bit discouraged about everything going on. Should I just accept that this is “the new me” and learn to cope, or should I keep fighting what feels to be a pointless battle?

I have so much more going on in my personal life than “just my health,” but I feel it all stems from this disability. If I was still competent and could work, things would be better. If I could go on walks around the neighborhood with my dogs, I would feel normal. If I could go….anywhere really….and leave behind the fatigue and dizziness, that would be amazing. It’s stuck to me like a heavy thick paste and its consuming me. I’m losing myself in it. I’m losing my purpose. If something doesn’t break soon, I’m afraid I’m going to lose it all.

The secret inside

2015/01/img_4166.jpg

I was diagnosed with Anorexia Nervosa when I was 11 years old.  I suffered for years with this disease.  Everyone who loved me suffered too.  I never intentionally hurt anyone, it just happened.  My disease was stronger than anything or anyone else.  I never considered myself truly recovered until I became pregnant with my son.  That was in 2005.  He saved my life.  I had years of counseling and hospitalizations, and none of those things “fixed me.” Everyone who ever tried to help me had good intentions, but they just couldn’t break through.

My son turned my world upside down and changed the focus from me to him.  I truly worked hard, for the first time in my life, on “getting 100% better.” I didn’t avoid and redirect in therapy, well for the most part.  I allowed myself to open up in order to heal.  I gained a lot of weight.  I felt healthy.

Then, I got “real people sick.” I got diagnosed with a rare cancer (a tumor in my chest called Dermatofibrosarcoma Protuberans) and yet again, I was facing something I couldn’t control.  I had to have surgery to have the tumor removed, and I had to stay awake for it.  It was really traumatic for me.  I made it, though.  I was thankful they got it out and I could move on with my life.  As the surgeon was cutting out the cancer, I imagined all of my anger and fear going to that location and being removed from me forever.  I prayed that was the case. Unfortunately, I was very wrong.

I was a single mother in college and working hard.  Out of nowhere I started passing out.  I ended up at a Neurologist’s office and then referred out to a big hospital for autonomic testing.  That’s when I was diagnosed with Neurocardiogenic Syncope and Postural Orthostatic Tachycardia Syndrome.  That was the beginning of all this.  Four years later I am sitting here, disabled, exhausted, and unable to even do what I went to school for.  My whole life feels out of control.

I feel Ana creeping in.  Ana, that’s what I called my disease, “anorexia” was a stupid name.  “Ana” was much more personal.  I’m not starving myself.  I can’t.  I have to be on a high sodium diet.  I am supposed to have 10,000mg of sodium a day.  If I am to be completely honest with myself, lately I am only getting about half of that.  Ana has never been about food, really.  It’s always been about control.  Funny, it’s always had more control over me than I have ever had over it.

I haven’t talked to my doctors about this, and I don’t think I will.  I’m 5’8″ and 134lbs.  They would probably think I’m stupid, since I am heavier than I have ever been (with the exception of being pregnant).  I don’t know how to explain it.  It’s more about what my mind is going through than what my body looks like.  As I said, I’m not restricting.  I can’t afford to.  I’m just suffering alone, in my mind, and I think I need help.

Feeling overwhelmed

frustration

I can’t seem to get it right.  I am trying so hard to “get better,” yet I’m feeling so much worse.  After my last Reiki session, I felt alive for the first time in a long time.  For almost a week I was having fairly normal blood pressures and fairly normal heart rate.  I was having little to no energy, as usual, but I was proud of my pressures.  Then, everything hit me all at once and I crashed.  It was my fault.  I stopped taking my medication. I thought if I am really going to trust God for healing that I needed to step out in faith and put the meds down.

  IMG_6602

So, after spending the entire weekend in bed (or on the floor when I tried to get out of bed), I decided to start taking my meds again.  Hooray for Midodrine tingles! (For those of you who do not have experience with taking Midodrine, it is a wonderful drug for raising blood pressure.  It is also great for causing SEVERE goosebumps from the scalp to the toes.  When taking it, I am sweating and freezing at the same time.  I am covered in “goosies” and it’s hard to function this way. I guess it’s trading one problem for another. But isn’t that how most medications work?)

My real issue is fatigue.  I’m completely exhausted!  No one in my life seems to understand this, except for other POTSies.  My Dr has ordered a medication for my fatigue.  It’s called Nuvigil.  It sounds promising.  My insurance doesn’t seem to think so.  They won’t pay.  Now my physician is trying to convince them that I need it instead of a cheaper alternative.  Story of my life.  I just want to have energy.  I feel guilty about being tired.  I feel guilty for being weak.  I want to be productive.  I want to WANT to do housework.  Instead, I lay right here, feeling frustrated.

I have this feeling deep inside that if things don’t change I am going to lose people in my life that are important to me.  I have to try harder.  I have to push myself more.  The more I push the weaker I feel.  This is the reality of CHRONIC illness.  This is my life.

IMG_2146

Update on my bones

2015/01/img_4048.jpg

I was quick to assume the bone scan machine was correct in its diagnosis of osteopenia. Apparently it wasn’t. The Dr called me this morning to tell me that after reading the scan, I have been diagnosed with osteoporosis. What this means, I don’t really know, except that it’s progressive and I’m fragile. I guess I already knew that. I’ve never been strong.

Chaos within

image

I am hoping for a great change.  It is precisely why I am devoting so much time to Reiki.  Yesterday, my guy asked, “If there is one thing you would want or need from the Reiki sessions, what would that be?” My response was, “For the chaos to be gone.” I wasn’t even sure if I meant the physical chaos in my body or the emotional chaos I feel.  Perhaps I was referring to both.  I have this feeling that a lot of my physical chaos is coming from these deep rooted emotional wounds.  I have recently been realizing more and more that the majority of my emotional pain is coming directly from me.

image

I don’t know yet how to fix that, but for the first time in my life I am truly determined to try.  I can never remember a time when I truly loved myself.  I never realized until now how horribly sad that is.  I have so much love for everyone else, but none for myself.  My body is telling me now that this cannot continue.  I need to love myself. I need to forgive myself.

In the last week I have had not so random events occur that have convinced me that it is time to move on and heal.  The other day, I ran into someone I haven’t seen in several years.  I had wronged this person, and even though it was unintentional, I still had been carrying that guilt with me for so long.  Seeing them gave me a chance to apologize and to let go.  I had said something to a friend about how “my body hates me” and she replied, “Well the feeling is mutual no? Maybe if you loved it more it would love you back.”  Wow.  Message after message, I am hearing what so many have said before, but I was never able to hear until now.  I owe that one to Reiki, as I believe it is opening me up to receive truth about myself.  It’s as if the Universe itself is sending messages repeatedly to me until I finally “get it” and stop the madness!

image

So, at today’s session, that is exactly what I prayed over and over.  “Dear God, please help me to open up and receive your Love, your Healing, and your Peace. Please help ‘him’ to be a vessel and let Your Healing flow through him into the depths of my pain.  I love You, I need You, and I am trying to love me too.  Please help me to do just that. Thank You for not giving up on me when I gave up on myself.”

Some may read this and laugh.  Some may just think I am going too far with believing that my physical and emotional are one in the same.  I don’t really care.  I don’t think every physical ailment is connected to something emotional.   However, maybe just maybe, for me…it is.

A bump in the road

2015/01/img_1942.jpg

I went to the Hematologist’s office today to sign the application to receive Procrit directly from the pharmaceutical company. The financial coordinator was extremely sweet. I told her how this medication could possibly be a life changer for me, how it could possibly give me back some quality of life! She had tears running down her face when I told her some of what I’ve been through with trying to advocate for myself and all the trouble I have had with physicians not knowing what to do for me. She told me that today she will be praying for a miracle.

As we were going through the paperwork, I asked her to tell me what diagnosis code the physician was using to show Johnson & Johnson my need for Procrit. “785.0,” she said, “Would you like me to look that up?” Oh no! I’m very familiar with that code. It’s the ICD9 code for Tachycardia. Excuse me, but why in the world would a Hematologist think that I could get approved for Procrit with a diagnosis of tachycardia??????? What is wrong with people???????

I politely explained to her that this particular Dr is not the sharpest crayon in the box, and asked if she could call the nurse for a little pow wow. I explained to her what my concern was, and what I thought would be a better diagnosis. Since “anemia” isn’t a possibility (that’s a story for another day), I felt that at least “hypovolemia” would give us a shot at getting the shot! 😥 The nurse added this to my chart. Let me repeat that. The nurse ADDED Hypovolemia, an already proven issue of mine, to my chart. Then, she approved the change to Hypovolemia on the application.

It is evident at this point that I need even more than prayer. God can’t fix stupid, and there appears to be A LOT of it in the medical field.

2015/01/img_3928.jpg

The time is near

2015/01/img_3900.jpg

I just received a call from the financial coordinator at my Hematologist’s office. She said that my insurance will not cover Procrit, which the Doctor says I need. She said the pharmaceutical company, Johnson & Johnson, has a program to help those in need. I am meeting with her tomorrow morning to sign the application. She told me that the turn around time for processing the application is 24-48 hours. This means that I could potentially be receiving this shot by Friday!!!!

2015/01/img_3899.png

I have never been more excited about the possibility of getting a shot! Keep checking back for updates. I’m quite sure I will have a few in the next week!

2015/01/img_2897.jpg

Alternative Ways

2015/01/img_3811.jpg

I decided since my first Reiki session went so well months ago, that I would try for another. I called my “guy” and he came to my home this morning. He brought his table and set it up in my living room. Before we began, he asked if he could cleanse my home. No, he didn’t vacuum, mop, or do the dishes. He didn’t get gloves and scrub the kitchen floor. This was a different kind of cleansing, a spiritual one. He cleansed my home with sage, which I found to be quite refreshing.

When our session began, I immediately felt the warmth emanating from his hands into my head. I actually asked him what he put on his hands because my head felt as if it were on fire. Of course, we all know he didn’t “put anything on them.” It was energy. That which I cannot understand, nor can I explain, is that which I think is going to heal me.

I have a lot of issues. Anyone who knows me is probably laughing while reading that last sentence. To say I have issues is truly an understatement. I would be better described as someone who has a complicated and fierce web of emotional turmoil entangled in the very fibers of my being. I was told that people have “space between their cells.” I have no space. It’s all issues!

Anyway, when he placed his hands over my heart, my chest started burning. I felt a flow of energy going in. This was nice. I began to pray that God would use this man to heal me, in whatever way I needed healing. Perhaps I won’t be healed physically of my POTS. Perhaps my healing will be spiritual or emotional. Perhaps I’ll be given the strength to deal with my physical ailments in a better way. I’m fine with that. I don’t expect anything but I’m believing for something.

When he placed his hands over my abdomen, all that warmth I was feeling began to feel stuck. It was no longer “flowing.” I felt myself quickly becoming frustrated with my own spirit. I immediately blamed myself for the block of energy and even asked him if I was doing something “wrong.” All I’m doing is laying on a table with my eyes closed, praying that God will somehow “show up” and I STILL am thinking I’m not doing something right.

All my life I have blamed myself when things go wrong. I have never really been able to see that whatever happens may not actually be my fault. Years of therapy have left me no more sure of myself than I was as a child. I’m convinced it’s simply “who I am.”

He told me it wasn’t my fault. He said I just have a lot that I have not let go of. Ha! You can say that again! Although, I find this interesting that supposedly I am holding all of my emotions in my abdomen, specifically where my large intestine is. I guess it makes sense, since most of my past is shit! 😏

Today’s session ended with me feeling refreshed and actually restored in a sense. My blood pressure went up 20 points and my heart rate dropped 20 points from the time we began to the time it ended. That in itself is a miracle for me!

You see, this low blood pressure with tachycardia is ruining my life. The meds aren’t working like I want them to and I’m tired. I’m tired of getting infusions that are only temporary. I’m tired of feeling like a lab rat. I chose not to take any of my medication today. Being the skeptic I am, I wanted to really see if Reiki would have any effect on my hypotension or my tachycardia. It did.

Again, I can’t say why and I don’t know how, but I’m thinking that maybe, just maybe, this guy is on to something. God put him in my life for a reason and I’m going to trust that He knows what He’s doing.

The man with the miracle

2015/01/img_3812.jpg

I have tried every doctor. I have tried too many medications. None of which have worked for me in the long term.

A few months ago I was dealing with the real possibility of losing a part of my large intestine if something didn’t change for me. I was on several different strong medications to attempt to get my large intestine working again. It hasn’t functioned properly for over 20 years. It was hyperfunctioning before I had my son. Then, almost immediately, it just stopped. No matter what I ate or didn’t eat, it just wouldn’t “move”. I would go weeks without anything and I was too embarrassed to tell anyone. Then, when I finally did “go” I would have episodes of fainting due to my vasovagal syncope. It got so severe that last October I ended up consulting with yet another gastroenterologist about the issue.

I was taking Lactulose, Sennakot, mineral oil, Prescription Linzess, and Magnesium Citrate on the regular. My medication usage was the only “regular” thing about the situation. I ended up in the hospital. I was terrified.

Then, a friend suggested that I do Reiki. She “knows a guy” and thought I could really benefit. Yeah, everybody knows somebody, but I never get better. I hate to sound so cynical but come on…alternative medicine?

For days I couldn’t stop thinking about the Reiki. There was a spark of interest that I could not ignore. So, I texted her “guy” and made an appointment.

The day of my session was very stressful. I was getting my port-a-Cath placed the very next day. I was nervous about everything.

The session itself was extremely relaxing. It was in a comfortable dim lit room with soft music and a faint smell of hippie leaves. 😁

I decided that If I made it this far and I was already laying on the table, I might as well do everything I could to relax and really TRY to believe in the possibility of something actually happening. After all, I’ve seen miracles happen for others.

Halfway through this session, I started crying. I just felt a “release”. I can’t really explain it but I know it was very strong emotionally and spiritually. Just like that…like breaking a fever. It rose to the surface and shattered like glass. I imagined it all just falling to the floor. I imagined this release to be how a butterfly feels when breaking through the cocoon. How a snake feels when shedding its skin. It was raw and emotionally painful and refreshing all at once. I had been holding on to a lot of fear and I somehow let it go.

Within two days, my large intestine started working again. I stopped taking ALL medications related to bowel issues.

I absolutely cannot explain what happened that day. I personally believe that God used that man to heal my intestine. I know most people reading this will think I’m a nutcase. That’s ok. In fact, most of the time I am. This time though, I couldn’t be more serious about my miracle. I have a pile of untouched medications to prove it. I have told my Drs. My cardiologist said not to try to explain a miracle, just to accept it. My neurologist said prayer is sometimes the best thing we can have. It’s weird though, I don’t need anyone’s validation. I’m just thankful for whatever happened.

I cannot say that my gut won’t ever give me trouble again. There is no way I could, since I can’t really even explain what “fixed” it in the first place.

“The man with the miracle” that does the Reiki says that I healed myself. I find that hard to believe. Either way, I’m blessed.

At least for now, no more embarrassing hospital visits. That’s something positive in the midst of all this crap. (No pun intended)

Depression

2015/01/img_6297.jpg

I don’t even know what to say. I’m afraid to say the wrong thing. At the same time, I’m afraid if I don’t say something I’ll bury myself deeper inside this isolating cocoon. It’s comfortable, to be honest. Laying under the blanket, wrapped tight. No one can get in. No one can see. These thoughts consume me.

I can’t help thinking that no one knows what I am feeling, that no one really would understand if I tried to explain. I’ve already been told that all I talk about anymore is “being sick.” I’m supposed to try my hardest to think positive. I’m supposed to work hard to make myself feel happier. Nevermind the fatigue. Nevermind the dizziness. Just try hard and maybe, just maybe, things will be better. Just smile.

My head is spinning. Part of it is that I have been uncontrollably crying for the last two hours. Part of it is probably physical stuff too. I don’t actually know. Come to think of it, I don’t know much. I like to think I know things sometimes, but we all know I’m lost.

I need to talk to a professional. At least that’s what I’ve been told. Right, because all the other “professionals” I’m talking to are helping me SO MUCH.

Contrary to what people think, I do find joy. My son brings me a tremendous amount of joy. I honestly believe that he sometimes is the light that guides me. I also find joy in talking to my friends online. I never thought I could have such close relationships with people that I met on the Internet! I know some may not understand, but I don’t need you to. I genuinely love these people. I cry when they have hurts, and I laugh with them too. I also have a few people “in real life” that mean the world to me and bring me so much joy. My dogs, they rock!

Here is my point: Depression isn’t “fixed” by having people that love me. It doesn’t just “get better” when something makes me laugh. Depression is a deep well with no ending. It’s always there. It whispers even in the good times. I wish I could “think positive” and change everything. This sickness for me isn’t just about POTS or Hypotension or any of the other stupid physical issues I have. For me, Depression claims a corner in the sick house too.

If you have a loved one who suffers from Depression, please understand that it is very real and is debilitating. It consumes you. Please never make them feel they can control it by attitude. Take it from me, that’s insulting and even more depressing.

The Dr will be in shortly

2015/01/img_3668.jpg

I saw my neurologist today. I love him. I mean, I would actually have him to my house for dinner if I could. He’s a nice man. He has compassion. He’s brilliant. He even asked about my son today! Granted, he was trying to distract me from the biopsy he was doing on my hip and leg, and I’m sure he knew talking about my son would help calm me down. Still, he’s truly awesome.

He’s nothing like my cardiologist. That guy gave up on me. He told me on Monday that I “should probably look for another cardiologist, one that’s willing to do experimental treatments.” He said he “wants to stay on the team,” but just has “nothing more to offer.” No, that guy is disappointing. That guy is what’s wrong with “the system.”

My neurologist though? Amazing. There’s only one slight problem…he still can’t get me what he thinks I need. He’s trying his damnedest, but that isn’t enough.

You see, insurance is the real problem. The drug I need, Procrit, is $2000 a shot! My Dr has advocated for me to get this shot. My insurance says no. It’s really that simple. The one thing keeping me from possibly feeling functional again is an “approval.” So, instead he offers other suggestions.

He tried to encourage me by prescribing a “pick-me-up.” I was on Adderall for four years…just to help me get up in the morning. My body said stop and I listened! That was over a year ago. I’ve been tired ever since.

Part of my condition is fatigue…an excessive, ridiculous amount of fatigue. I told him today that I cannot keep living like this. I reminded him that I don’t want to be on Adderall again, for many reasons, but that something has to give!

Nuvigil was his answer, and I hope it’s a good one. I tried to get it filled at my pharmacy. Insurance wouldn’t approve it. It requires prior authorization. Of course it does! Nothing is easy when it comes to healthcare. Nothing is easy when it comes to me.

Bones

I’m frustrated. I went for my bone density scan today. I have brittle bones, per the scan. I’m not worried about it. In fact, I wouldn’t even be upset at all if it weren’t for the fact that I KNEW the steroids were causing bone damage and the Drs kept telling me they weren’t. I took Fludrocortisone for four years. It kept me upright while I was working and being a “normal” half-functioning part of society. Ok, I wouldn’t even go as far as to call it half-functioning. Let’s be honest, I was struggling to get by every single day. When I finally decided to come off this medicine, mostly due to the fact that I started passing out again and did not feel it was worth taking anymore, I told my physician. I asked permission actually. For an entire year every Dr I asked said, “you will never be able to come off of this medication.” I finally found a physician who would do it safely. I told him why I wanted to stop. I told him I don’t want osteoporosis at 40 years old! I’m 32 now. I knew it was hurting my bones. NOONE would listen to me. Today, looking at the results of that scan, I had a moment. I had an emotional breakdown, but kept it all inside. I’m angry that I’m not being heard. I’m frustrated with this feeling of not being important enough. Thanks Doc, and thanks Florinef, I now have to be even MORE careful when I’m dizzy not to fall!

2015/01/img_3609.jpg

Is there anybody out there?

2015/01/img_2295.jpg

I fully admit to being high maintenance. My whole life has felt overwhelming, and I’m sure anyone near or close to me has felt drained from simply being in my presence. I hate that about myself. I hate being “sickly”. I hate that I can’t remember a time when I was healthy. Since I was eleven years old I’ve had health issues. I’ve always been weird. Always. Here lately, though, I’ve reached a whole new level of freak. I have an invisible illness. I don’t “look sick”. I am often consumed with my search for an answer and I enjoy talking about it.

I’ve lost a lot of friends in this recent journey. Perhaps they just got bored with me. Perhaps they tired of not being able to “hang out” anymore at the mall or the craft store. Perhaps I’m an embarrassment now. After all, I do have to frequently sit so I don’t pass out. Some days are better than others. Some days I can actually walk around a store for a while without being any more than just dizzy and exhausted. No one would know that though, because since dealing with all of this I am no longer invited to go anywhere. God forbid someone have to come to my house and visit me, just sitting and talking. How boring. I guess I’m just feeling down lately. I’m tired. I’m feeling pretty alone.

If it weren’t for my lovely friends online (the ones I have met through support groups), I probably would be much worse off. I feel incredibly blessed to now know the new friends that I do. I am actually thankful to my illness for this. If it weren’t for being so sick, I would have never met these individuals that truly brighten my life.

Still though, I can’t help but think about all the people I thought were friends here, where I live. I can’t help but feel sad. I want to use this whole experience to help others. I want to tell people, “Hey, if you care about your chronically ill friend, just send a text. Call them once in a while. Invite them out. Even if they say no, it may make them feel good that you thought about them.”

Just food for thought. No one wants to sit at home alone. I didn’t ask for this.

Problem solved

I have recently been having pre-syncope episodes WHILE in the tub. Baths used to be my favorite relaxing pastime. They used to be my “getaway”. Now, I’m afraid I’ll never be able to take them again. Showers are so hard as well. (Standing already makes me dizzy and heat makes it worse). A while back, I passed out while trying to get out of the shower. I felt it coming, but couldn’t stop it. My son found me in the floor and put a towel over me before he contacted my neighbor for help. I promised myself I will never make my 8 year old have to go through that again if I can help it. Guess who now is the proud owner of a shower chair. So, shower with chair=good. Bath=bad. Except it’s not that easy. I have a port-a-cath. I’m told I can only take a BATH while my port is accessed. I’m told it’s too risky to shower, because the site may get wet in a shower. I found a way around that. Thanks Hefty. You’re the best!

2015/01/img_2909.jpg

Exercise

So, there’s this Dr in Texas that insists upon convincing other Drs that POTS can be cured with exercise.  Seriously, screw that guy! I now am a not-so-proud owner of a recumbent bike so that my Cardiologist doesn’t think I’m being “non-compliant” with his treatment plan.

Sunny-Health-and-Fitness-Pink-Magnetic-Recumbent-Bike-0

In reality, I need more blood.  My volume is low.  They give me saline to increase the volume.  It’s not blood.  It’s salt water!  I would benefit from Procrit (that’s an amazing shot that happens to increase red blood cell production and volume…it also happens to be $2000 per shot).  My Dr says if I can show the insurance company that I’m trying everything possible to get better, they may be more likely to eventually cover the shot.  So, I bought $90 compression hose.  I got a bike.  I’m drinking my fluids and eating my salt.  I’m blowing up like a freaking whale over here.  At least I’m being compliant!!!!! I’m so ecstatic about it that I even decorated my bike…

IMG_2545

In case there’s any confusion, that is in fact an El Dia de Muertos (Day of the Dead) sticker.

Don’t get me wrong, I WANT to get better.  I want to feel good enough to be able to go grocery shopping without being dizzy.  I want to feel good enough to take a bath without literally passing out IN the bathtub.  I would like to be able to shower again without having to use a shower chair.  I genuinely want to be functional.  I just don’t understand how that’s going to happen from me riding a stationary bike every day.  I’m trying, but man I feel like shit.

Feeling plump

I am swollen.  IMG_0013

I get 2 liters of Saline via my port a cath weekly.  I have low blood volume.  If I don’t get saline, I have low blood pressure and pass out.  I also have tachycardia upon standing.  Every. Damn. Time. “POTS” they call it.  Postural Orthostatic Tachycardia Syndrome.  It’s just a syndrome.  It’s not a disease.  Yet, I am now plagued by it and rendered helpless in most areas of my life because of it.

Back to the saline.  It does help me stand up for longer periods of time.  It makes me feel pretty awesome for an hour or so…before I crash again.  I’m guessing this celebration is so short lived because my kidneys can’t seem to filter properly, causing me to quickly pee out everything I just got at my infusion.  Boo.  Anyway, at least the infusions were helping some.  Last Friday was different.  I was 30 minutes into my infusion when my chest started to feel weird.  Almost cold inside, right at my sternum.  By the end of my bag I was seeing stars and feeling dizzy.  I neglected to tell my nurse.  Today, I felt the same way, except throughout the entire bag.  Now, 12 hours later, I’m sitting here in bed wondering why I didn’t say anything.  My face is ridiculously swollen (so much so that my real friends weren’t afraid to tell me) and I’m having shortness of breath.  As a matter of fact, I am struggling to get proper air when I lay down, so sitting up at an angle to sleep is most likely what I will do tonight.

Perhaps I am miraculously healed from my blood volume deficiency.  Perhaps I’m feeling so horrible because I’m overloaded on saline that I no longer need.  I chuckled at myself while typing this.  I do believe that God can heal people.  I’ve seen it first hand in my life.  For some strange reason though, I don’t feel He would heal me.  It still doesn’t hurt to dream…

New to this

ride

Hi! I’m 32 years old.  I’m a mom.  I have an “invisible illness” (though it’s not so invisible to me).  I’m recently DISABLED.  *shutter*  I used to be a social worker.  I used to help people.  I used to work in a nursing home and have daily arguments with nursing staff on the many ethical dilemmas involved with caring for elderly, demented, or mentally handicapped individuals.  Now? Now I stay in bed A LOT. Now my best friend is a NURSE.  Now I’m sarcastic as hell and have little ability to hold back my opinions.

I find myself waiting quite often.  I’m waiting on a cure.  I’m waiting on an answer.  I’m waiting on someone to  make me feel like it really is going to be alright, despite what my depression tells me daily.  I’m waiting to have the strength and energy to be something in this world other than the “queen of memes” on a Facebook support group for other invisible sickies.  Waiting really sucks.  In the meantime I guess I’ll just continue to search for, find, or even make incredibly rude and hilarious memes, sharing them with others like myself, who have to find humor in suffering.  Otherwise, what’s the point?