Sunday, October 27, 2013

Misery Loves Company!

As I have said in past blogs, I have some friends that also suffer from invisible illnesses. One of those friends had some interesting posts on Facebook today about putting on a "mask" to hide her true feelings......what I found most interesting, and telling, was that she indicated that said "mask" was more for her own benefit than for others. That wearing it allowed her to deal with the depression that comes with suffering on the inside while looking normal on the outside. The comment I made was that there comes a time when you have to throw away the "mask" and admit to needing help and support. This, I feel, is sound advice.....but it is definitely easier said than done!

 I have worn that proverbial mask for the last almost three years and it wasn't until I recently made the decision to seek professional help for the depression and anxiety that the mask truly came off. Now I find that I am incapable of putting it back on.....the flood gates have been opened, so to speak....and although it is still difficult to allow others into my new world as a sick person, I also find it oddly liberating to no longer hold everything inside! I am sure most people would rather we keep the masks on and continue faking normalicy, but that is not a realistic expectation. We can't "fake it" forever. 

Someone asked me the other day, "What is it like to be sick and no one can tell?" Well, quite frankly, it sucks! I think that if you asked anyone with an invisible illness that question they would say the same. The biggest hurdle I have found, so far, is getting people to believe you! The issue is that most of the time we all look fine, and some days we even feel fine, but then there are the horrible days where we feel as though we're dying but still "look fine" to the outside world. Those days where you got no sleep, can barely get off the couch and every move you make causes you to feel like you've been hit by a Mack truck.....yet, if you looked at us, we'd look exactly the same as we do on a good day! I know that in my own experience there are some days where I will hobble into the bathroom and fully expect to see a shriveled old woman, hunched over in unbearable pain staring back at me from the mirror.....yet all I see is me. Maybe looking a little extra tired but otherwise it's just plain old me. It's in those moments that I understand why it is so difficult for non-sufferers to wrap their heads around our illnesses. I understand why it's so difficult for our families to accept that we are sick when we don't look sick. (There's an absolutely amazing website that everyone who suffers from invisible illness should see and loved ones of the sick NEED to see at! I swear this woman crawled inside my head and said everything I haven't been able to convey!) This is when I think that the "mask" may be more harmful than helpful! We put on this mask so that others just see the "old" you, the healthy you, the happy you......and the reality of the situation is that we will never be those people again! The "old" us is dead and's a sad truth but a truth nonetheless! I will never be the same, I will never be able to do the things I once did, I will never be able to accomplish many of the goals I had set for myself when I was healthy.......Yes, sometimes that is a hard pill to swallow but swallow it I must because I finally figured out that until I can truly accept what is happening to me, how in the Hell can I expect anyone else to accept it!?! Until I understand the "new" me, how can expect understanding from others?!? There's a new commercial making the rounds on TV about Lupus specifically and, ironically, it talks about patients wearing a mask to hide their symptoms (even from their Dr). Then it says to take off that mask and be honest about how you feel. I didn't realize how right that commercial was until today when I read my friends posts. 

Don't be afraid of your new normal! Don't hide how you are feeling out of fear of what others might think or feel! You don't have to wear a "mask" and suffer alone, because there are many of us that suffer from these horrific diseases and we need to support eachother! We need to stop hiding, we need to stop worrying about how other people might perceive us, we need to come together and help eachother deal with whatever comes next! 

I know it may sound cliched, and to some it may sound pessimistic, but in our cases I think that the old adage takes on a whole new and supportive meaning.............Misery Loves Company!

Saturday, October 26, 2013

Enough is Enough!

What a whirlwind few months this has been! 
So many things to process, so many new disappointments to try and accept.....where do I even begin?

Around three months ago I started experiencing some strange new symptoms. I woke up one afternoon (I suffer from horrible insomnia, so I tend to finally fall asleep in the wee hours of the morning if I fall asleep at all.) with what I thought was the beginning stages of the flu. I had the full body aches, chills and a horrific headache! I didn't think to much of it since a few of my friends had been ill the week prior, so I took some pain meds and curled up on the couch. Well, that is where I remained for the next three days and, strangely, my symptoms never progressed into the "flu". As each day passed, I noticed that the pain radiating through my bones was getting worse by the hour. It got to the point where I could literally feel every single joint in my body and the larger bones felt like they were being crushed from the inside. The headache lingered on for a full three days no matter what meds I took. I would go from a cold sweat to feeling like I was laying inside a furnace in a moments notice yet I had no dicernable fever. As you might expect I was beginning to get concerned as I entered into day number four of these odd sensations! I called my Dr's office and got the soonest appointment they could manage which was the following week. Then, around the middle of day number five the frightening symptoms simply vanished!? I was exhausted, of course since I suffer from chronic fatigue syndrome, but otherwise felt normal. Or I should say "normal for me". The episode concerned me enough that I kept my appointment with the Dr which turned out to be a good decision because the morning of my appointment I awoke to the symptoms of concern returning with a vengeance! My Dr ordered blood work and a leg scan (to check on the stents in my vein). During the next week or so, while we waited on the blood work, the alarming symptoms came and went in waves. One day I would feel fine, except for my normal leg pain and swelling, then the next day I would lie on the couch in tears because my bones felt as though they were breaking. Almost two weeks later my Dr called and informed me that the blood work and leg scans came back relatively normal but she wanted me to make an appointment for the following week to see if we'd missed anything. That was a fortuitous decision! During the follow up we discussed all of my symptoms again and went over the tests. While she was looking at my blood panel she realized that one of the tests she'd ordered was not in the report. It had been archived in the wrong system, so she logged into the hospitals records and pulled up the test results. Her face fell a bit.....I knew something wasn't right and now, I could tell by the look on her face, she knew it too! The test that had been missing from her system was a very specific test for Lupus and the result was positive. (A false positive is possible but considering my history and symptoms the odds of that, in my case, are very slim.) All of a sudden the tone of our conversation changed. It was like she was putting a puzzle together and all the pieces were falling into place. We discussed all of the medical issues that had arisen over the last three years, my families medical history and all of my new was pretty obvious that she was seeing everything in a whole new light. After an awkward moment of silence, she leaned towards me and said "Ok, given all the information, we are now working under the assumption that you have Lupus." I had suspected this, or something like it for quite some time, but to hear those words come out of my Dr's mouth made my heart sink. The only bright side is that if SLE ends up being my final diagnosis it would explain every single thing that has gone wrong with me since I started getting sick back in 2010 while I was working in Salem! (Excess stress is one of the primary triggers for Lupus, and I had that in spades when I was dealing with all the drama up there.) We still have a long road ahead before reaching a definitive diagnosis. There is more blood work, researching all the labs I've had done over the past three years, inflammation tests and possibly a kidney biopsy before I can even get into a Rheumatologist for further investigation.(There is a terrible shortage of Dr's in that field right now, so they won't even take new patients without multiple tests confirming the suspected diagnosis.) 

In addition to that tentative diagnosis, I finally broke down and agreed to see a Phycologist to deal with the depression and anxiety I have been having. I have officially been diagnosed with Major Depressive Disorder/Recurring/Moderate and Acute Panic Disorder w/ Agoraphobia. I like this Dr very much, which I wasn't expecting, so I foresee his therapy helping quite a bit. We are attempting to treat without meds for now, so we'll see how it goes. 

As if the new developments weren't enough, I am still plagued by the recurrence of my Pilonidol Cyst. The old wounds aren't healing and, as of last week, there is a whole new cyst developing. At this point my surgeon wants me to continue with care at the Wound Clinic and see how it goes. He is afraid that if we perform surgery at this juncture it might make things worse instead of better. So, for now, that issue is on the back burner unless the condition worsens. 

I am completely and totally overwhelmed! On the one hand I am elated that we are one step closer to a possible answer to my ongoing medical mysteries, but on the other hand I am terrified! If I am officially diagnosed with SLE (Systemic Lupus Erythmatosis) there is truly no end in sight. The disease has no cure. All we can do is treat the symptoms as they come and attempt to prevent flares. It's scary to think that your own immune system can turn on know that cells your body normally creates to attack infections suddenly start attacking your vital organs and tissues for no known reason! This knowledge makes you fear your own makes you wonder "Will tomorrow be the day I catch a cold and my own body will kill me because of it?". That is the fear of anyone living with a chronic autoimmune disorder. I know that nothing is certain at this time, but that doesn't make the fear go away, in fact, it makes it worse because the longer you go without a diagnosis the more time the disease has to do irreparable damage to your body. It's a terrifying road to travel and I wouldn't wish it on my worst enemy!

My body is saying it's done, but my heart is saying to fight to the end and that is exactly what I intend to do!! I am a fighter dammit and I will win this battle! It helps that I have an amazing husband by my side.....a husband that meant it when he vowed "in sickness and in health...". If I didn't have Brian and the kids I would've given up a long time ago. Without them as my constant support system I would've been defeated because the sad reality is that when things like this happen you find out that a lot of the people you've supported over the years don't reciprocate that courtesy. The common name for these people is "fair weather friends". You know the ones, the people who say they will "always" be there for you through think and thin but then turn tail and run when crisis hits. I have found out the hard way that even if you've devoted your life to being the "helper" that once you become the "helpee" those "fair weather friends" disappear. Now, don't get me wrong, I have a few very devoted friends that are doing the best they can to understand what I am going through and support me as best they can. To those people, and you know very well who you are, I love you with all of my heart and soul and don't know what I would do without you!!! I have learned a lot these last three years about loyalty, devotion and the essence of true friendship but I would be lying if I didn't admit that I have been terribly disappointed by the response of people I once called "friend"! When I give my friendship to someone it is forever, regardless of circumstances. I love with my whole heart and with that I give others the ability to break it.....and believe me when I say I know what it is to have that heart smashed into a million little pieces. It is a pain like no other, especially when you still love the person (or people) that broke it in the first place! Rest assured, I still love every friend I have ever had and I always will, but the time has come where I need to put myself first and if that means cutting ties and burning some bridges......well, then that is what I have to do. If, sadly, one of you reading this today is one of those "fair weather friends/family" and you find yourself on the other side of that burned bridge please remember that I will always love you but it's time for me to take care of me! My love is forever.......but enough is enough!

Saturday, June 29, 2013

Me, Myself and I

I feel alone! Even when I am in a room full of my nearest and dearest, I feel like I am completely and utterly alone. Maybe it's because I spend most of my time inside my own head. Maybe it's because I have internalized everything for so long that I can't even let myself have a conversation without eventually word-vomiting all my problems onto people. Or maybe it's more simple than that, maybe it's because I am truly alone.....emotionally I mean. Let me be clear, my true friends and loyal family try their hardest to understand what I am going through and how I feel, but the reality of the situation is that nobody can even begin to understand how I feel! I have many friends and family who are disabled or have chronic health issues, but none of them are me. None of them know what it's like to live everyday inside my body or worse, inside my head! From the moment I wake up until the moment I fall asleep, IF I fall asleep at all, I am in some form of pain. Physical and emotional! Of course everyone tries to sympathize, and some suffer similar issues, but not one of them has a clue what it's like to be me! I am not trying to downplay anyone else's problems, but I am tired of being the one who is the listener.....sometimes I want to be listened to, sometimes I want someone to have some sympathy for me! I know what you must be thinking......"God she's selfish!". And, yes, maybe that is a bit selfish sounding but after all the years of being the sympathetic one, I feel that I deserve to ask for the same in return. Make no mistake....I DO NOT want pity! I loathe pity because its fake! It is a meaningless emotion that doesn't make anyone feel better! Sympathy and empathy are very different and worth while because expressing those emotions mean you truly care about the person that suffers.
I am tired of feeling this way! I am tired of being the "odd man out".......I rarely hear from my "friends" anymore, and if I do it's because they need something or want to talk about their issues. Then there's the fact that the in-law situation hasn't gotten any better......My mom-in-law  only speaks to me when she has to and I can see the daggers in her eyes whenever she looks at me! My father-in-law won't even acknowledge my existence!!! If it weren't for Grandpa Paul and a few awesome cousins I wouldn't have ANYTHING to do with any of them strictly out of self-preservation! I can't even think about it without feeling like I am being stabbed in the heart!!! I miss that family more than anything!
When I do finally open up to somone out of sheer desperation, the subject is quickly changed to something "less depressing" or something frivolously stupid! (There are a few exceptions to this scenario and you know who you are.) Even worse, if I try to voice my opinion on a topic or vent how I am feeling about a specific situation I get attacked and, in some recent cases, threatened for having an opinion that doesn't mesh with the status quo or I unintentionally offend someone by phrasing something wrong......I am to the point where I am just going to stop talking altogether. To some of you that would probably be a blessing......"Loud mouth Kari is finally shutting up....Hallelujah!" 
Most of my days lately have been filled with constant crying and depression due to both physical and emotional pain, frustration due to the fact that even my own family (except for my amazing husband) doesn't believe me when I scream out in pain, fear that soon it will become too much to handle alone and I will completely lose my grip on reality, and finally paralyzing anxiety and depression due to pretty much everything! I don't even want to be around people anymore. They infuriate me most of the time......the few friends I have left are the only ones I can stomach and even they have lost patience with me. They try, they try really hard! But I can see it in their eyes.....they're tired of me, they're tired of having to "deal" with me and my never ending stream of bullshit and drama! Many would say I have brought this on myself....that I have ostracized myself from them and its my fault that I am alone! Maybe thats true, but for a reason........Which brings me back to the original point: after two years of non-stop pain, anxiety and depression I have finally figured it out...I can truly count on three people.......ME, MYSELF AND I!!!!
(I began this post back in June, got about 2-3 sentences in and gave up. I finally finished it tonight in a desperate flood of emotion!!!)

Saturday, June 15, 2013

Fear and Loathing in KariLand!

I loathe my body!! I am not talking about "body image" or vanity, I am not one of those girls that has a panic attack every time I look in a mirror. I am not going to lie and say that I love every aspect of my physical appearance. I have days where I swear my clothes shrank in the closet! I don't wear a lot of makeup...... Honestly, I have no one to impress and even if I did, if someone judges me based solely on appearance I don't need or want them in my life!  I am talking about the simple fact that every time I think things are calming down health-wise and possibly improving I get slapped in the face with a new problem.....or an old one coming back to haunt me! Let me explain:
In 2000 I was diagnosed with chronic pilonidol disease. For those of you who don't know.....oh just Google it! The short story is that it's a chronic "cyst" on the coccyx (tailbone) and very painful. I had surgery in 2001 to attempt to remove the "cyst" and was told that the chance of recurrence was very small.....WRONG! I have had multiple recurrences since then, the worst being last August 2012 which resulted in a highly invasive "cleft lift" procedure being done in late Sept 2012. My surgeon told me that he's "never had a recurrence after a "lift" before" so he was "very optimistic" that this would be the end of my issues with this condition.....WRONG AGAIN! The "cyst" returned last month and the week after we moved I had yet another surgery, only this time the wound was left open to allow for drainage and healing from the inside out. Needless to say I am not a happy camper right now! Now, you would think that this would be enough right? Well, you would be as wrong as my surgeon! Yesterday I noticed that tell-tale "red flag symptom" for us chronic DVT sufferers: the "pulled muscle" sensation in my thigh and pelvis. (For those of you who either know me personally or read this blog, you should know about my chronic health conditions that began two years ago last week. If not, go back and read some of the old posts to get caught up on my seemingly never-ending health saga.) I tried to ignore it, since yesterday was mine and Brian's 11th wedding anniversary, but today that "pulled muscle" sensation has turned into full-blown pain and the anxiety is taking over! This is the exact symptom that sent me to the ER in Sept 2011 and resulted in life-long health issues and permanent disability. My heart tells me that I need to get to the hospital and get checked out, but my brain is fighting my heart because it is on overload as it is and is shying away from any crisis situations! On top of all of that, we are supposed to be going on a much needed vacation next week and I don't want my health to ruin yet another trip! I know, I know....that is a stupid and selfish reason to avoid the issues, but if you had lived through the last two years of my life you would understand!
If I were being completely honest with myself I would admit that the real reason I am avoiding getting checked out is FEAR! Fear of getting treated like a hypochondriac, fear of this being a recurrence of my DVT, but mostly it's fear  of finally losing my battle with my body! I have already been at deaths door, I know what it feels like to think your next breath is your last and I cannot go there again! I remember that day so vividly, it's tattooed on my brain: the machines were beeping constantly, my blood pressure was so low that I couldn't stay conscious, my eyes were open but I couldn't see, everyone's voices sounded so distant.....I could literally feel myself slipping away, like I was drowning inside my own body! I couldn't even stay conscious long enough to tell Brian I loved him....all I could think was that I wouldn't be able to tell my children that I loved them and that I was sorry I couldn't stay with them! I never, ever want to experience that ever again!!!!!
That, my friends, is all for today! My love to you all! I'll keep you updated on any new developments.