Real Talk About Microscopic Polyangiitis (MPA)

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So, in interest of being real, I feel like some people might think I am attention seeking or feeling sorry for myself. While yes, I am feeling a bit angry and disturbed at having this damn illness that robbed me of so much, I know I can beat it to an extent…it is accepting the limitations I have. I compare myself to before I was sick, a beautiful, active, vibrant young woman who could walk for miles on end, hours, across two towns in one night. I compare myself to the girl who would wake up refreshed and be able to conquer the world if I had to. The girl who was a 4.0 special honors student at college. The girl who went out with friends all the time. The girl who had a job I loved, and was great at. Then it all started to slip away…a little here, a little there. Eventually I couldn’t even walk across the house a few feet to go from my bedroom to my bathroom, let alone across campus to go to school, so I stayed home. I failed 4 semesters of college because of being too sick to even sit up for long at a computer. I started to isolate. Eventually I got so ill, I could never breathe…coughing until I bled…nosebleeds, skin sores, pain. My father was in the hospital and I couldn’t visit him because I thought I had an infection in my lungs…he died and I never could tell him I loved him or say goodbye because they wouldn’t let me in the ICU sick and coughing up blood. Eventually just to walk I needed a cane, and at stores, a cart to ride on. I gained weight. Lots of it. I was giving up and wishing I Would die. Something told me I was dying. Then came a switch to a hospital, Sanford in Fargo. I got an internal medicine doctor, doctor Aruna Aravapalli. She listened to me from start to finish and suspected a few things, so she took some tests. When they came back messed up she sent me promptly to Rhematology. After seeing all of this they said I was sick. If they did not find out what was wrong with me, I’d need to go to Mayo clinic. The problem, they said, was that I did not fit into one disease symptomatically. I fit many. So, 63 tests, CT scans and other testing later, a diagnosis of Microscopic Polyangiitis was made. Positive P-ANCA level with positive MPO’s…high inflammation levels, kidney issues, chronic sinus changes, lung problems, skin, everything…though they are still trying to see if I have an overlap in autoimmune diseases, they started immediate treatment. I was told I did not have long left to live if I did not start treatment ASAP and the only reason I did not die yet was due to the high doses of prednisone that I had been on off and on for years on end for my lungs…it kept me alive, but did not put this disease into remission so I can have quality of life. I laughed and smiled when they told me. This is kind of odd I know, being told you have a life threatening rare disease, but I had been accused of being a drug seeker, hypochondriac, attention seeker, and mentally unstable. I had been told everything was in my head, and that they could not find anything wrong with me…I was dismissed by everyone I delt with. I was even told by a doctor that I obviously did not need his services and he refused to see me any more because I missed an appointment because I was bleeding out of my lungs coughing up blood a lot, and was too sick to go to the appointment. I was treated callously, only to find out that my feelings were right, and that I had been targeted because THEY couldn’t figure it out, so it must have been me being a liar, druggie, crazy etc. Now I knew I was not wrong, that they were. Anyway, I compare myself to my old self, not seeing that I can drive (although I need a handicapped permit), and I can walk without a cane. I can use a regular cart in a store, and not a riding cart although I have to rest a lot. I am also alive when I should be dead. I was near it when I was diagnosed. I need to accept my new reality, my limitations. I need to adjust my goals and my life in order to fit this new reality, and still have a quality life. I am thankful for being alive…but yes, I feel angry. I grieve myself. I sit afraid sometimes when I am sick again that I could die. I grieve the life I had before…and sometimes I get so angry I can hardly breathe. Why me? Not hardly. I ask why ANYONE should suffer these diseases. I hate the disease…and I think it is unfair that life can be changed so much in a heartbeat…for me, for anyone with a multitude of diseases. So bear with me as I adjust to my new reality. Don’t ignore me. Think of me when you make plans. I am isolated enough because of this illness. Even if I can’t make it because I am sick at the time, being asked means the world to me. Don’t be afraid of me. I am not contagious. You don’t need to treat me different. I am still Tamara. I am still me, and I can still love, laugh, and play. I had a dream once where I was invisible. I was reaching out to all these people and no one could see or hear me. I woke up sobbing. It is happening now. Please do not shut me out…out of site out of mind. I am here. I am alive, and I am still Tamara. Even if I am a slightly different version of Tamara, I am still inside here somewhere.

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A Day in the Life of “Your Lord and Master”, King T…

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Well I have done it again! I have proven that humans love to be tortured, and because of this I will continue to do it nightly. See, my human servants decided to go to sleep. I of course had other ideas in my mind. Here is what happened when the lights went out and the oh so trusting humans closed their eyes.

1. I climbed up onto the dresser and started to knock things off of it, not once but TWICE! (that they noticed anyway) The humans got up and decided to yell at me so I went and hid. Not cause I was scared, but as long as they were up, I couldn’t do the other things I had planned.

2. I knocked over the trash in the bedroom. There was Q-Tips in there, and I love the taste of earwax in the morning!

3. I dug in the trash in the living room. It serves my humans right for throwing away such tempting objects as wrappers and cans, and snot rags…I LOVE THOSE! I shred them and leave snot shreds all over the floor!

4. I took a roll of toilet paper and drug it to the living room. I shredded it up real good, so they can’t use it any more, and they have a mess to clean! BONUS! Who doesn’t like fluffy softness all over the rug?

5. I opened the cupboards and dug in them, even dragging some things out of there. You know how much they enjoy that one? Whooheeee!

6. I jumped up and knocked the books, phone, and remote off of the bedside table. Everyone knows humans shouldn’t be allowed to have such things…it distracts them from what is truly important…ME

7. I dug in the closets looking for Styrofoam packing peanuts. The humans threw them out and now I am pissed. They will get theirs!

8. I decided since that was not nearly enough I would eat some of my mom’s hairbrush hairs, so when I pooped, it would hang from my butt until it dropped off hair and all onto the floor! THEY LOVE IT!

And through all that they still love me and think I am cute. I still get loves and kisses, and even treats. Why? Because I am cute as hell…and I have the power! Tis the life of a cat!

POSTED BY TIGGER WITHOUT PERMISSION FROM TAMARA. I OWN THEM I DO WHAT I WANT =^_^= meow

A Letter to My 15 Year Old Self…

Tamara,

I know this may be a lot to ask, but please hear me out. I know how cynical you are, and how much pain you are in right now. I know right now you want to die and are going to try to do it. I know how confused you are, and I want to tell you not to allow that to break you. I can assure you that those who treated you the worst eventually get the lives they deserve. You might ask me how I know this. I am you 20 years in the future. I know that you have it hard. I know about the abuse, the bullying. I know about you being sick and in and out of hospitals and homes. I know how you feel completely alienated from the world, like you do not belong. These experiences will make you into a much stronger person, capable of love and compassion. You will make a difference. I could go on about the mistakes you will inevitably make in the future, but that is not going to help you at all. In fact if you avoid these mistakes you will not end up where you are right now, with the people in your life you have right now. You have some of the best friends anyone can ever have, family that is amazing, including two nieces and a nephew, and right at this moment you have a guy who you like and likes you back. I know you were always overlooked in the love department so I had to throw that fact in. No, what I can say to you is, despite all the things you will do, all the things you will go through, you are strong enough and brave enough to not give up. The sunshine comes after the darkness, you will emerge a butterfly. Yes, you will struggle. Just don’t make the mistake of giving up. Don’t you EVER give up on yourself. Don’t EVER let anyone define you. Even if certain people hurt you, abuse you, and tear you down to nothing know that you are special. That you matter. That, while life is not perfect for you, you are perfect. You are loved, and you are the reason why so many people smile. You. In fact one day you will save someone’s life, did you know that? In fact it will be in about a year from the date you read this. You will be volunteering in the hospital, and you will be bringing flowers to a man who is hopeless. He will tell you to throw the flowers on his grave. This man has no family visiting him and he is dying of cancer and has given up. You, at age 16 will tell him not to talk like that, and when he tells you to go away, you will sit down and tell him that you know what it is like to give up. That even if his family doesn’t care you do. You will hold his hand and talk with him for about a half an hour, and go back to see him every day. One day you will go back there to find he was released, and he was healthy. You would have been the one to give him hope.Given him the strength to fight. And that is what you will do. Give hope to people. Through your life experience you will make a difference. I can’t tell you what the future holds past my time. I do know  you will one day be the one who needs the hope, but trust that someone will come along and give that to you, just as you once gave hope to someone else. Remember honey, the future is yours, and no event is worth taking a beautiful person out of this world. Life is not so bad. In fact, even though you feel way too deeply, are too sensitive sometimes, and choose to fade into the background most days you are amazing. One more thing. Remember that chasing money and materials will always hurt you. Keep on the path of love and remember what you were taught about love and life. You will be okay, I promise.

With Love,

Tamara (June 6, 2012)

Here Comes the Mopey B.S.

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Honestly, I do not know what the hell is wrong with men…specifically one man in particular. My ex. Yeah this is one of those posts. I just do not get why some guys just do not see what they have? I am so sorry if I want the fairy tale. No I do not mean some rich asshole and a huge castle with big dick McGoo and his silver chariot. I mean someone who I can go the distance with. Someone who, 65 years later will still hold my decrepit old hand and look at my wrinkly face and saggy tits and say “you are so beautiful…let’s get the Viagra hot stuff!” In all seriousness, I am kind of bitter right now. Every girl thinks that every relationship is “the one”, or secretly she hoped it is that, but often these dumb men do not get it. They seem to grow brain dead and forget the second the bad things in life start to occur. Mine happened to abandon me right around the time I was growing sicker. Of course being called names all day is not my idea of the fairy tale anyway, but why? Is there a defect in their genetics rendering them incapable of compassion? Okay, okay I admit not all guys are neo maxi zoom assholes, but really…do I have to grow a dick to meet one? Yeah I am saying those damn gay men…yes they seem to be perfect. Of course occasionally you will meet a straight guy who has a heart, but often they have been overlooked or hurt so much they won’t open up to you. I do not know…Maybe I just want something in life. Maybe I need to become happy with myself. Maybe someday I will find that guy, if that guy is not already in my life, which some days I feel he is, but until then…until the dream of a life with love is fulfilled I will sit here wondering why the Y Chromosome hasn’t self destructed sooner than it has been with how it seems to love destroying relationships and hearts that happen to lie in it’s asshole path. Whatever. I am going to eat a choco taco and pretend for a minute I am a lesbian, or at the very least She-Ra princess of power.

Oh What the Hell?

Some days I feel like I have hallucinated my entire existence. I seriously open my eyes and think to myself “what kind of messed up drugs was I on to hallucinate this crap?” I often make myself feel better by realizing that it was my parents, not I, who are to blame for this mass delusion that walks the Earth. That weird entity they named Tamara. On a lighter note, I seem to have awaken some abilities to communicate with ghosts. At least that is what I think must be happening because the alternative is a lifetime in a psychiatric unit, and a daily cocktail of Thorazine and possible ADHD medication to help the insanity. There is of course a method to my madness…and there is a reason why things are so nutballish in my world. I won’t bore you all with the details as of yet. Maybe later on when I decide whether or not it is even worthy of saying. Blah blah blah. I mean come on. My ex is sleeping on the couch, I am on the computer ranting incoherently, and the hallucination continues for another damn day. I think I am starting to enjoy exploring the insanity of my brain, but like all good things (or in my case, like all mediocre yet somewhat amusing things) this brain needs sleep. Time to pop my nighttime cocktail of “who gives a fuck?” and hit the sheets.