The Way

Posted on August 25, 2014 by lymestorm

I can finally see small improvements in my treatment. Most are small by other standards, but just having more “good” days is amazing. Dosing is becoming easier (though I don’t think it could have gotten much worse after last month.) I found out at my doctor’s appointment on the 15th that I have a very mild reaction to my new IV medication, all I have to do is predose with Benedryl and I’m ok as long I don’t develope a more severe reaction. I’m only dosing for 2 weeks at a time now and then have a full week off. Not having to go back to the doctor for 6 weeks…AWESOME! I’m napping less on most days and my cognitive fuction is taking baby steps forward.
But then there is the downside…the dark side of my brain is coming back. I’m searching for The Way to navigate all of this.
I cannot fathom abandoning my Roman Catholic roots. I believe in God and Jesus and the Holy Spirit. I don’t go to church, yet strangely the only 2 places I have ever felt moved to tears were at Saint Patrick’s Cathedrals (1st in New York City and 2nd in Dublin, Ireland.) Even before I walked into St. Patrick’s in Dublin, I had this feeling that I had been there before (this was my first trip to Ireland.) I felt as though I had been there in a past life. I knew in great detail what it looked like inside before I walked through the doors. I knew where the women’s chapel was. I could see it like a memory with me included, a memory so intense, so real, as if I were there to worship hundreds of years ago. It left me stupified. How could this be? I had done enough research on Ireland to know some things, but I wanted most of it to be a surprise, so its not as though I had researched and studied pictures. Ever the “bad catholic,” not attending church in years. I couldn’t even be a considered a C and E (Christmas and Easter only church) catholic. My only feeling was divine intervention, the spirit within me, reminding me the He was there. My entire trip that feeling stayed with me and intensified as the land, the air, the people secretly called to me. I know, it still sounds strange to me after almost a year. If only it were as easy to move there, to be comforted by a country that held many of my ancestrial roots. It was like a drug. Once I had that comfort, that safe place, that feeling of peace in my soul, to the very core of everything I was…I could not go back to life in the United States and be unchanged.
(Side note : I do conceed that in the last 5 years I have had many life altering events, each one preparing me in some way for the next.)
I might be a “bad Catholic,” and while agreeing with basic principals of Catholicism, I have struggled for most of my life with The Church. I believe in love in whatever form it takes. While in some instances its needs to be controlled (i.e. child molesters, rapists, etc.) as the saying goes “you can’t help who you fall in love with.” I, myself, am heterosexual, but if I were to fall in love with a woman, I do NOT believe that God would turn me away or punish me. I don’t believe that both French kissing a man before marriage and murder will both get you into hell. Those are Church Rules. I still see flaws in The Holy Bible. I believe God to be omnipotent. But The Bible was written by men. You have to take into account that some things were lost in translation, especially in a time when women were seen as subservient.
I strongly disagree that unless you are baptized you will not get into heaven. I was raised Roman Catholic by primarily my mother, who was raised that way by her parents and so on, in a primarily Christian country. According to the Church, Jews/Buddists/Taoists/Paegans/etc, will all be kept out of Heaven. That doesn’t fly with me. I’ll use Ghandi as an example. Look at all the good he did in the world, do you mean he didn’t get into Heaven? Absurd! I believe in being a good person, a kind person, emathatic, compassionate and above all, a loving person and God will welcome you with open arms. I think God is forgiving, so long as you are TRULY repentant. I may not have always been all those things all the time but I do believe that God forgives me.
But Catholcism has left a huge hole in me that yearns to be completed. It doesn’t fill my needs. I have investigated some other religions and I do take parts from them that have help to fill some of the hole inside. But I’m still looking for “The Way” that works for me. It is at this very point in my life that this has become an odessy that I must take.
In today’s world we are bombarded with all varieties of religion, yet it is still a taboo or “impolite” subject to discuss. We teach children to hate an entire culture because of the extremists or heretics of that religion. Wars are still being faught in the name religion. It greatly saddens me. What most fail to realize is that most of the principals in the religion are similar and the foundations on which religion was based are similar stories handed in the teachings.
Its the fine print that causes the most problems. Instead of sharing the wisdom of religion we fight it like cancer. This creates a struggle for someone like me.
I know mostly Christians. Therefore they share The Bible leaving me forced to try to navigate other religions alone. I do pray to God every day. Still the struggle ensues for fulfillment. Yoga, most commonly associated with Hindus, is an excellent tool for me when I can. But try doing Downward Facing Dog or Planking when your muscles are shaking even without exercise.
I look at this world, not just me and my problems and see so many people in need of a high power of some form. We look to religion to understand the atrocities of the world. Most people have lost their humanity.
So how and why is this coming to forefront of my problems? I see a corrupt government that created this disease (lyme and its coinfections) and released it on their own culture to test out for biological warfare (something the Nazis did too.) They refuse to pay for its treatment and deny their part in it. I didn’t do anything wrong to get this. I didn’t have unprotected sex or share needles. I was trying to enjoy fresh air (which is polluted) and cultivate a garden as apart of the cycle of life and to help bring the honey bees back (there is much scientific information that says when the honey bees die off the world is doomed because there will be no cross pollination.) I didn’t “try” a drug knowing the risks involved including a family history of abuse. I did nothing to bring this on myself and be forced to undergo excruiating pain, destroy my finances and lose my job. I did nothing at all to deserve this and neither did millions of other people. A chronic illness of any form not only affects the inflicted individual but their families and friends as well. And I openly admit that I do throw some damn good pity parties for myself once in a while.
The point is that I need to come to terms with it and believe in something more powerful than just myself and to explain the wickedness of this world. That was part of the reason for this blog, to help others through their suffering. To be a vessel in which to share known information. I still need help and with the disappearence of people I loved so deeply, thinking they would be there to help me through this, I am lost yet again.
My mom and I were discussing her going back to work, assuming treatment continues as it has on this round. I immediately flew into panic. She was going to go back to work (the ride being physically taxing on her body) and how things would change. Some the changes would be manageable but I would be pretty much on my own if something happen (she would be at least an hour’s drive away.) That scared me. I felt guilty for not being able to take care of myself, for putting all of my burdens on her, including finances. And this ladies and gentleman, is why “The Way” is a new neccessity in my life. I have only a few weeks left to amass more coping techniques. (I do not expect to master anything in that short period of time.)
I believe we are all put here for a reason. When people say “how do you justify God killing someone (i.e. babies/children/emergency services workers?) I say that person has fulfilled their duty here. Maybe it was to change someone else from a path of destruction, or to teach a lesson. That was easy to do with death (not that is making losing someone any easier emotionally, but its a way to rationalize it, at least for me.) Its a lot harder to apply that personally. I’ve said before that I think that getting sick may be the the best thing to happen to me. I still believe that. I live on the belief that its teaching me something and making me the person God knew I was intended to be. But if anyone else has any good ideas, words or wisdom or practices that may be helpful, my heart and mind are both open and willing and waiting…

Posted in Anxiety, Babesia, Babesiosis, chronic pain, fighting back, getting better, growing stronger, hope, I will get better!, Life is unfair, Lyme, lyme disease, religion, spiritual, Uncategorized | Tagged | Leave a comment

Life Cycle

Posted on August 11, 2014 by lymestorm

I’ve come to a rather dark place in my mind. I’m not sure how much of it is treatment or this disease or just my brain. It amazes me how many years I spent getting to know myself and finding out how I felt about things and now how wrong I am. I went about my life as a human being – working, sleeping, cleaning, running errands-all the daily tasks that we as humans go through on a daily basis to “achieve” and “keep up” with one another. I was caught up in the whirlwind of “American” living and while I knew some where deep inside that there must be more to life, I continued-too tired, too stressed out to make time for change. There was always “tomorrow” or “next week” or “next month” or even “next year.” Even while being the Lyme, Bartonella, Babesia and Mycoplasma ravaged my body, I fought to keep the American dream. I didn’t come from much and I was bound and determined to “make it.” I knew I did it on my own through hard work and perseverance. I didn’t have my parents giving me money hand over fist like so many of my friends. I didn’t have a back up, either I made it on my own or I didn’t. I was so proud of myself in secret, yet yearned to “keep up with the Jones.'” I thought I had a good grip on my priorities. But the last year, the last 8 months in particular have blown everything I knew out of the water.
When my brother passed away 2 years ago, I started really examining my life in a way I never had. Coincidentally, it was also the time that my disease really started to come to a point where it was no longer able to deny that something was seriously wrong with me (though an actual diagnosis would take 18 more months to obtain.) After his passing, I developed this overwhelming feeling that I, too, would die at 32 from something no one could figure out. That led to a plethora of horrendous thoughts, mostly centered around my mother – “how would she cope?” “would the death of both children kill her too?” The list was endless.
I launched myself into this decluttering stint. I got rid of tons of things I no longer needed. I organized what I had left – all motivated by the thoughts of my own death and wanting to make it as easy as possible for people to go through after my death. I made playlists of music I wanted played at my viewing and at the grave site. As I tend to do with everything, it was all or nothing.
At the same time I dove greatly into finding meaning in my life, in the legacy I wanted to leave behind. And then there was my health. While having this fear of death in 3 years, I decided I wanted to live, again mostly because of my mother. I couldn’t have her bury another child. I jumped head first in to research, trying to obtain a diagnosis when doctors failed. If I can offer one bit of advice to someone who knows there is something wrong with them it would be “BECOME YOUR OWN DOCTOR.” In this time of technology there is no excuse not to do your research. If you think a doctor knows everything, you are wrong! They go into their offices or use their iPhones to look up things too. The key is to find a doctor who is willing to work WITH you. I went to nearly 20 doctors over the course of the last 5 years alone. I put my body through every test suggested in my quest to find an answer. I spent hundreds of hours searching the internet trying to find anything. I found my P.A. who was my last hope. I literally walked into the office and said “I don’t know what to do anymore, you are my last hope.” She took the time (not just the 20 minutes allowed per patient) to work with me and put me in touch with the clinic where I would definitively get my answers.
So when I finally got an answer it was almost too good to be true. As I prepared to “get better” and know the battle I was going to fight, I was so confident that I could do this relatively unscathed from the natural darkness of my own mind. I was wrong and I have arrived in some of the darkest places I have ever known in my life.
This last month I have been extremely emotional. I am depressed. I cry. A LOT. I am moody and cranky. Friends have stopped calling or texting or coming for visits. I am watching everything I have worked so hard for disappear before my own eyes. I am paralyzed in pain or at best greatly restricted. And the icing on the cake was getting a letter from the state retirement board simply stating that they would reevaluate my case in 6 months or unless it worsened significantly. If they could see me they would know how bad I am doing. And my funds are almost drained. I have become what for the last 3 years I have been trying to fight – a human “being.” Being positive is simply just not cutting it.
While I know that I am extremely lucky to have what I do, the support both emotionally and financially from my mom, I still feel so hopeless. I tried “One Day at a Time” it doesn’t work when you are so close to filing for bankruptcy and losing everything. I can’t even dream about the future and my small cottage because I have no idea what will happen with my credit or how long it will actually take for me to get better, at least to a point where I can function on my own. I feel like I being dragged down to the deepest part of hell in my own mind and help prisoner there.
I feel everything so much more intensely than I ever have. Every emotion. Every sensation. Everything. I try to sit outside when I can. It seems to be the only thing that quiets my mind in anyway. I will look at a leaf and I can feel the life in it, how carefree it is. It does no worry about death, it does not worry about anything, except absorbing nutrients to supply to the greater good of the tree. There will be thousands of leaves born and died throughout the life of the tree but each one matters. Birds will nest in the tree and create new lives within that nest. Its all part of life. And this is why when I look at the leaf I feel it so intensely. It is not in competition with anything. It is simply living the best and only way it knows how.
Perhaps this is why I think of Ireland so much lately and feel it calling me home. It is the only place I have ever felt “at home” in my entire 30 years. I have been forced to let go, of not just my possessions but my preconceived notions as well. I sometimes think that being sick may be the best thing that has ever happened to me. I feel closer to nature and God and no longer fear death. I’m not ready for it to take me just yet but it if does, it will be in the natural cycle of life. I hope that I survive this war intact and that I will be able to be the best I personally can be. Its just too soon to know anything for sure yet.

Posted in hope, illness, Lyme, lyme disease, nature, sick, spiritual, suicidal thoughts, Uncategorized | Tagged | Leave a comment

Babesia, Oh How I Loathe Thee

Posted on July 27, 2014 by lymestorm

I know that I should be writing more often to document all that is going on, but I’ve just been too sick and my brain has once again turned to mush.
I thought I was lucky. After finishing my first 3 weeks of dosing, I had my “off” week. I was really sick for the first 3 days of the week, but by the last 2 days I was actually doing pretty good. I had the best day that I had had in months. And then I went back to the doctor…month 2 of antibiotics are kicking my ass.
The weekend before my appointment I received a phone call from my clinic asking if I would be interested in participating in a new study to help identify why Lyme (and its co infections) affect people differently. They are looking at genes to help identify factors as to why some patients become so ill and why some are difficult to treat. Out of all the patients in the clinic they selected only 20. So I’m one of the 20 in the study and one of only 20% of their patients requiring IV therapy. This makes me realize how sick I am. My next visit is with the head of the clinic, “The Wizard of Oz” as some call him. In a strange way I’m looking forward to it. He had come in during my first two appointments, so I have met him. This man is a leader in Lyme and has helped people around the world. This just further proves to me that I am in the absolute best hands that I can be in to give me the greatest chance for the best recovery I can have.
Back to the appointment. My original appointment was at 1040am. We’d miss traffic both to and from. But because of the research study, they wanted us there by 9. The drive down was horrible. We hit a TON of traffic due to an overturned tractor trailer on the main highway in the state. Despite the traffic, we made it there by 940. They took me back for the study (explained the study detail, took some blood and gave me 2 components needed to be done at home.) We were late for our appointment but the doctor was running behind so it all worked out. Speaking with doctor she was impressed at the progress already made, said they don’t usually see till months in. My mom noted the improvement in my cognitive function. I was riding high on the horse, till the horse threw me off and trampled me.
I got my new meds. Originally I had thought I’d only be doing one or two new meds a month. This month there are 6! I’m still on the IV meds that I was on the first month and they added a new antibiotic for the babesia (Babesiosis in the name for the infection.) I did my test dose in the office. The nurse said that the most common side affects are a metallic taste in your mouth all the time and headache. The doctor had explained that babesia treatment can be rough (a slew of symptoms but the decline in cognitive function was the one I was most worried about.) I still thought “I got this.” I also figured based on last month that I’d be sick on the days after I dosed. Boy, was I in for a surprise!!!
Before I go any further, let me explain that my appointment days are very hard on me. It’s roughly a 2 hour drive there with no traffic, I miss my naps, my anxiety is high, my nerves are on edge and I dread the ride home. All that being said, its makes me start the occasional jerk/twitch/spasm which usually gets more frequent throughout the day.
After my dose I had the metallic tasted in my mouth, nothing else. We checked out, got loaded in the car and started the drive home…and then it all began. We were not even on the road for 15 minutes on the road and I noticed my jerk/twitch/spasms getting worse. I knew that I got worse the longer the day wore on but this was pretty quick decline. It kept going…this was a herx and it would be the most intense by far. My mom guesstimates that by about 45 min into the drive is when things really got bad to watch. I was jerking limbs, full body spasms, stuttering and stammering and near tears. I honestly felt like I was suffering from a seizure, a stroke and Parkinson’s all at the same time. Keep in mind I’m in the front seat of the car. My mom said she could feel the car moving from the herx. I can only imagine what I looked like to her. It had to be incredibly hard for her: not being able to help her child, watching the road and trying to watch me to make sure I was ok.
The major part of the herx lasted about 3 hours. My mom took a short video of it when we got home and I was collapsed out the floor. I know what I went through, but even I couldn’t believe what I looked like, it was like watching someone else in your own body. While I was on the floor (being out of the car and spread out) I continued to herx but then I started trying to control my body, the mind is a powerful thing. I tried to clear my mind, quite difficult when your flapping around like a fish. I started to pray and meditate. I then started on my body. First my breathing, then extremities (one by one), then my trunk.
I’m no guru by any means but through this journey I have delved deeper into spirituality which I think it helping. I have talks with my body “I know that you are worn out but you to keep fighting” (no I’m not crazy); I work on feeling my body (mentally); I work on connecting my body and my brain. I’m fighting with everything I have; I am utilizing the Universe and praying to God. Never bring a knife to a gunfight!
The last week has been very difficult. Everyday sucks, I’m sick all the time. I don’t every other day to recoup. My brain is turning to mush again. But that’s Babesia-literally a parasite dying inside me. Babesia is often compared to Malaria, very similar symptoms. So now not only is the Lyme bacteria being killed, so are the Babesia parasites. And this is only month 2!
I’m hanging in there. I’ve been a little more cranky than normal and have had some severe emotional days. But what else can I do? I try to be mindful of others and be aware of my words and actions. I apologize to those whose texts/emails/phone calls who have gone unanswered or at best, severely delayed. There are days I don’t check my phone at all. Mostly though, it’s from being too fatigued. Knowing I’m too tired to have a conversation or that my brain is not working and I can’t understand things. This blog itself, its taken hours. I did it early in the morning and delayed my meds to be able to do it. Thank you Spell check!
I hope to blog again soon, as soon as I get a brief moment of clarity.

I want to send a special note to some people. Stacy, thank you for your love and support and I’m sorry that I haven’t replied or blogged;) I think of you often and as always are in my prayers. Kara, thank you for all that you’ve done and continue to do. I love you very much! You are my “golden girl” till the end! Maria – thanks for the car ride and the cold stone. It was huge pick me up. I love talking with you. You’re so interesting and unique and I love you too!

Posted in Antibiotics, Babesia, Babesiosis, chronic pain, fighting back, getting better, growing stronger, healing, I will get better!, IV infusion, Life is unfair, Lyme, lyme disease, ticks, Uncategorized | Tagged | Leave a comment

Poison + Pain – Pride = PROUD!

Posted on July 16, 2014 by lymestorm

I have been learning a new level, type and duration of pain. I’ve always had a high level of pain tolerance. When I had my thoracic outlet surgery (aka my top ribs removed on both sides) the doctor and the nurses both couldn’t believe I had been through the surgery I had because I was dealing so well. That was the most intense pain I had felt, that is until the last 2 weeks. I’ve had pain in every fiber, every cell of my body. Pain that makes you want to either implode or explode.
The last week has been the worst. I spent days in bed, something I didn’t think I could ever do, no matter how bad I felt. Guess I was wrong. I was so cold and sweating at the same time. Just to have my super soft sheets touching my skin burned so intensely. I felt like I had the worst sunburn of my life, luckily it was just on my entire back and biceps/triceps.
For about two days I needed my mom to press with her entire body weight on my hips and certain point in my back just to be able to move. It was “fantastic” to not be able to move my legs. Again I needed my mom and we figured out a system. She would bear with all her weight into my hips from behind for as long as she could and then she would literally pry my legs apart. I needed a rest before she had to pull me up to a upright position and then pull me up onto my feet making sure my legs wouldn’t give out.
So its been a rough couple of weeks but I’m still fighting. Every day is a mystery and a battle. I never know how I’m going to feel and what new “trick” these diseases are going to throw at me.
As I sit here writing this I have a plumber cutting a hole in my kitchen ceiling to fix a leak from my shower drain. (BIG thanks to a friend who gave me a great plumber:) Its just another thing going wrong. Besides being sick the state and the federal government are doing NOTHING to help. I have still NOT started getting my retirement checks. It took over a week and half to get a call back from my social worker. I STILL HAVE NO INCOME! I HAVE NOT HAD A PAYCHECK SINCE MID FEBRUARY!
Honestly, the last 2 weeks have been extremely challenging. My grandmother just stopped by and in the process of trying to reassure her that I will be ok and better than I have in years when this is over, it was a pick me up for me too. Days when I’m confined to bed its a different story. I have never felt more connected to and aware of my body and I can feel what is happening inside of me. It makes me question why God gave this to me and/or what I did to deserve this. I believe GOD HAS A PLAN, I just wish it weren’t so top secret. I know I have addressed what this disease has taken from me. Most days I still focus on the positive but I do have my “dark” days, days when the guilt of what its done not only to me but to my family. My grandmother cries almost every time I see her and definitely every time I talk to her on the phone and no matter what reassurance I give her that I will pull through this, she is never comforted. My mom has had to uproot her life to take care of me and be my “nurse.’ I have had my pride stripped away but I think its actually what I needed, my rock bottom…my way to start over and be the person I’m meant to be and do the things I’m supposed to be doing.
I had my first good day in over 2 months this past Friday and I probably overdid it a bit but I needed to take advantage of it. My mom and I ran some errands. We stopped at JC Penny’s and I walked with my walker, having to have my mom push me at times while I sat on the chair part of the walker. Even as little as a month ago I would have mortified (what if someone saw me that I knew? or what must other people be thinking? or just my pride in general.) But proud replaced pride. I was proud to be up and be moving. Proud to spend time with my mom. Proud I had fought damn hard and earned a good day.
While things continue to go wrong at every turn (Murphy’s Law.) But I’m remaining strong and I’m still not quitting.
The one thing that surprised me the most is how easily I have been forgotten by my friends. I’ll admit that I’ve become terrible at returning text messages, most days I don’t have the stamina to have a conversation in text. Even people that I thought would be there for me are no where to be found. Part of me knows that the standards I hold for friendship are completely different from what most people do. I can’t help it but I’m a loyal person, I’m Irish and Polish and we always hold our word. Its really all you have. And I admit that I have lost touch with a lot of people over the years as a result of wearing a certain mask to protect myself for getting hurt. It still saddens me to know that people I loved, just aren’t here. I get an invitation to go to an event (for someone else) from someone who is not currently speaking to me and has not reached out at to me all. Maybe I get the invitation, but if that person had bothered to reach out they would know that I am beyond too sick to handle it.
I have decided to love more openly. To be more kind. To forgive & let go, but never forget. What people of my generation really need to know is that its QUALITY NOT QUANTITY. And yes, I’ve known this for years and cut a lot of people out (the poison people), I am putting the time and energy into the relationships that I have left (it will be much better when I am better.) I am done competing in the world. One tree does not compare it to itself to another, it does not say “I’m prettier than you” or ” I’m better than you.” I NEVER thought I’d have problems keeping weight on! I see my weigh going down (I lost almost 10 pounds in 7 days, I see my muscles atrophy and my strength diminish but my soul is growing stronger.

Posted in fighting back, getting better, growing stronger, healing, hope, IV infusion, Lyme, poisonpeople, Uncategorized | Tagged | 147 Comments

First Week Of Treatment

Posted on June 29, 2014 by lymestorm

So I know I blogged earlier in the week about getting my port in and how Monday and Tuesday went but this week was filled with a lot of excitement and fear.
Monday and Tuesday I was having pain in my port site which I assumed was normal.  I also had a hard time turning my head to the left and raising my right arm just below shoulder level – again I figured it was all normal.  That is until GWUH called me Wednesday afternoon to check on me and I shared how it had been going.  The woman there said NONE of it was normal and to go to the ER.  At all costs of trying to avoid an ER trip, I called my doctor’s office and talked to the on call doctor who also agreed that I needed to go to the ER. I should note that I had a small lump just above where the catheter was inserted and where the guide wire was used. In the 2 hours from the time I talked to GWHU and my doctor it had gone from the size of pencil eraser to about a quarter in size, obviously making me more concerned of problem. (FYI-by the time I saw a doctor in the ER the lump was the size of a half dollar.)
Being that I was already extremely light headed and sick and my mom was concerned about being able to get me safely to the ER, I conceded and let my mom make the phone call to 911. (In case I hadn’t mentioned I used to work for 911 for 11.5 years and rode with a volunteer fire company prior to that.  I always told my mom don’t call me an ambulance unless I’m dying. Funny how things change.)
So the ambulance drove me code (lights and sirens) despite the fact they deemed me a Priority 3 patient (stable with no major symptoms, pretty much like someone who has a paper cut.) I was triaged in a timely manner but still had to wait hours in the waiting room (yes people, just because you call an ambulance does not mean you will get seen any faster, its all about your priority.)  After I finally got back in a room, I had a chest x-ray (to make sure that the placement of my central line was good) and a vascular ultrasound.
I knew things weren’t good when the tech kept asking me “Are you sure you aren’t on any blood thinners?”  The doctor finally came in to give me the good and bad news.  Good news – the line is stable and the placement is good.  Bad news – I have a small clot around the catheter. He said I needed to follow up with a Vascular doctor and Hematologist, as well as having another ultrasound in a week or so to see if the clot is growing.

During all of my pre-testing and preparation for antibiotic treatment, my doctor discovered that I tested positive for “Protein S” which can cause clotting problems.  My doctor had said that it may be likely that I would end up on anti coagulant (blood thinner.) The ER doctor started me on a full aspirin upon discharge.
I went home.  I had already had a small DVT (deep vein thrombosis/blood clot) in my leg 7 years ago after a long flight home from Las Vegas. Luckily that one was super small and they caught it before it got to my lungs.  Now? Was this one stable? Would it break lose again? Would I wake up in the morning? Yes ER doc had said it was small and really, they wouldn’t have let me go home if it was that bad.  But when it comes to me, it usually seems that anything that can go wrong will and usually does. 
Next day I call my doctor to fill them in (they had never heard of this before and they have been doing this for nearly 20 years.) After my doctor going back and forth, I was told go to to GWHU and have the radiologist take look at it and inspect it. It was 12pm and they closed by 4pm. Its a 2 hour drive from my house to GWSU. Beyond exhaustion from the last 3 days (stress, normally sleeping problems and positional sleeping (I sleep on my right side or on my stomach and the catheter on the right side of my chest.)) We did make it there by 4pm (pretty much on the dot.) Everyone was waiting on me.
Talked to the attending radiology physician. He said that out of the hundreds of cases they do a year, only a few have this problem. His suggestion was to stay on the blood thinners and follow up with the vascular doctor.
I have my appointment July 3rd with the vascular doctor.
As far as the rest of my treatment goes, it still seems that I am better on my dosing days than my “off” days. My joints are swollen and hurt. I’ve been cracking and popping a lot, muscle spasms are worse and my fatigue has increased. It like a really bad pre-treatment, raining for days, confined to bed Lyme day.
And this is supposed to be my easy month…

I still keep focusing on the fact that I WILL get better! I fighting the most important war of my life and this fighting Irish and hard working Polish girl is going to kick Lyme’s ass!

Stay strong Lymers and ROCK ON!

Posted in ER, Uncategorized | Leave a comment

Port Implanted – Antibiotics Started

Posted on June 25, 2014 by lymestorm

Monday was the big day, I got my powerline (central line port) implanted and got my 1st dose of antibiotics.  It was one of the longest days of my life.  We were supposed to leave the house at 430am but thanks to me moving slowly and my anxiety in high gear, we didn’t get leave till 445am.  We still made it to the hospital on time.  I needed to be there at 7am and we arrived at around 630.  I’ll admit I was pretty cranky.  Nothing to eat or drink after midnight and NO smoking.  I know I need to quit but I had been planning to quit after the port was implanted (we’ll get to that later on.) I had only gotten about 4 hours of broken sleep and to start the day I was running on fumes. 

I will say the staff at George Washington Hospital was pretty awesome and made things much easier.  There was someone within ear shot at all times, if not right by your side.  They explained everything very well (without freaking you out.) The port was implanted (took about an hour for the actual procedure.  Recovery wasn’t long (conscious sedation-twilight sleep) and I was pretty much pain free at the site after surgery.  After a couple of hours the bandage on my clavicle really started pulling and eventually I ended up with multiple blisters surrounding it (I am extremely sensitive to all bandages.) Later in the day at my doctor’s office and throughout the evening things got worse-it felt like when I fractured my clavicle.  Its been sore for the last couple days and I’m still trying to adjust to the port (I’ll post pics in a little while.) The port itself really isn’t that bad and (the bandaging makes it look worse than it actually is.) I’m sure in no time I will forget its there.

After the Powerline was implanted we headed over to my doctor’s office (hoping to get in as early as possible to avoid traffic on the way home.) At the office we were taught everything about the line (how it works, how to use it, how to change the dressing, how to maintain the line properly) and how to mix the medicine that I’ll be dosing on and how to handle everything at home. It was pretty easy for me (even in my state of exhaustion combined with all my regular meds) mostly because I’ve hooked up IVs more times than I can count and my mom did very well picking it up. I did my first test dose of the antibiotics in the office to make sure that I wouldn’t have any type of reaction.

After all was said and done we headed home.  By the time we got there I’m pretty sure that I have never been that tired in all my life. My mom said I was making no sense at all.  I slept (with the exception of having to wake up to take my nightly meds) about 14 hours.  I couldn’t tell you the last time that happened!

Day 2:  1st day of full dosing

Tuesday was my 1st full day of day of dosing on the antibiotics.  I’m supposed to do them 10-12 hours apart.  We decided on 8am and 8pm. Treatment takes about 30 minutes.  Not too bad.  This month I will be dosing every Tuesday, Thursday and Saturday.  More medications get added in over the course of the next 4 weeks.  On the days that I’m not dosing I’m supposed to do a full bag of lactated ringers (I’m writing this while I’m getting my ringers.)

After the 1st dose on Tuesday, I got a little sick (lower tummy troubles which got progressively worse throughout the rest of the day and after the 2nd dose escalated even more. At this moment I feel pretty horrible.  I have hardly any energy, I’m lightheaded and dizzy and week. (My BP this morning was 87/59, I usually run low anyway but that low for me.) I’m being forced to quit smoking.  Yes, I know it is the best thing I can do for my health but it sucks.  My last crutch.  Everything else, including not being able to leave my own home (except for medical appointments.) I feel like I’m a prisoner in my own home and in my own body. I feel like this disease and all of its co infections have taken over and I’m just a shell that’s dying from the inside out. Everything I do if affected by this. Its changed my personality and how I interact with people. I hate it! I despise it! I want it gone today, not 9+ months from now (not that it will ever really be gone completely.) I don’t even get comfort food. I’ve been mostly Paleo for the last 5 months but now I cannot under any circumstances have Gluten, Dairy and/or Sugar.

I had 2 of my best friends visit yesterday and while I was so glad to see them it also broke my heart a little. I can’t relate to them the way I used to. I don’t have anything to talk about other than my health and I’m tired of talking about that. From day one I did not was this disease to become me and while I try hard to fight against it, it seems to be taking over. Its not that my friends and I can’t talk about work (they do and I can relate somewhat, but again its just another reminder of something else Lyme took from me,) I feel like I can’t bring anything to the table and that unto itself is depressing. I hate bitching and moaning and complaining, especially all the time. Its why most people never knew how sick I really was, I didn’t show it and I really didn’t talk in depth about it. I wasn’t and am still NOT looking for pity. This is a shitty thing that happened to me through no fault of my own and I just have to grin an bear it.

Sorry that I’m not more positive today. Maybe I need to sit in front of my inspiration board and try to cheer myself up. Or maybe I just need to crawl back in bed and sleep as much as I can. I don’t know. I did find out too, that this is “supposed” to be an “easy” month to prepare me for what’s to come. I’m already feeling like crap after one full day of dosing, I don’t even want to think about the upcoming months.

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Treatment Date & Details & Ramblings

Posted on June 4, 2014 by lymestorm

Well I got the official word yesterday that on June 23rd I get my Power Line (central line) put in and start my antibiotic treatment. Its going to be a long day. I have to be in DC (a 1.5-2 hour drive) by 830 to get my line put in. After I recover from that I get to head over to my doctor’s office. My mom and I have to go through a 3-4 hour class on how to do the injections and change my dressing and all the stuff that goes with treatment (good and bad.)
So how do I feel about this? Mixed emotions to say the least. I can’t wait to start treatment so I can get better but at the same time I’m really nervous and scared. First of all I’m allergic to a host of antibiotics so I’m worried about having a reaction to them. Second, as sick as I have been, I don’t want to get worse and be confined to bed or lose the ability to care for myself or herx. I know in the end it will all be worth it, its just the next 9 months or so that I have to worry about.
I’m working on recruiting as many people as I can to come stay with me to give my mom a break. I cannot be left alone AT ALL for the 1st month, I have to have someone with me 24/7. That unto itself is gonna be hard for me because I’m so used to being alone most of the time now, especially since I had to medically retire from work. I have a few friends that have been regulars but for the most part, it feels like so many people have abandoned me. Good way to find out who your real friends are : get sick and people disappear like David Copperfield. Its really kind of sad.
Anyway, for those of you wondering what treatment entails let me try to explain the best I can. Once I get the central line and get the meds (keep in mind that I will be continuing all the supplements and meds I’m on now) I will be injecting antibiotics straight into my heart via the central line. I’m not sure of the exact schedule but I will be injecting twice a day every other day for week (i.e. Monday, Wednesday, Friday) and then I will be off for a week and then the following week I will be injecting again. Seems pretty simple right? Not so much.
I have to worry about all the things that can go wrong and how my body will handle the antibiotics. Seizure? Herx? Bedridden? Coma? Its all a risk that I’m taking (and an expensive one at that.) If there was another option, especially one covered by insurance, I would take it. But THIS IS MY ONLY OPTION!
I love how people just assume that I have no idea what I’m doing. I know that brain function continues to diminish (almost daily at this point) but when I was coherent I researched the hell out of this disease. I did my homework and I made an informed decision. I made that decision with the help of others I trusted, mostly my mom since she has been to every appointment with me at this clinic. I could on and on about the facts, the denial by the insurance companies and unwillingness of the CDC and NIH to change their protocols to ones that actually work.
(Side note-I find it hysterical and unfathomable that you can file for federal disability for Lyme but you can’t get an insurance company to treat it. So instead we have all these people that are able to be healed enough to get off disability but instead the government wastes literally millions of dollars a year on a treatable disease. That’s where your tax dollars go!)
As an update on my last post my anxiety and OCD are still out of control but they have calmed down a couple notches. My doctor has upped some of meds which are helping to chill me out and sleep better. Truth be known, I don’t think my anxiety and OCD will ever go away fully. I think its part of me. I would just like to be under control and quirks rather than full blown craziness, which it is now.
My health continues to decline. Tremors and twitches are worse. I’m having less and less “good” days. I suffer from CRS (can’t remember shit!) I can walk 5 feet and forget where I was going. I forgot what year it was today. Month and date I’ve never been good with thanks to shift work but its far worse now. I could go on about my decline but what’s the point? I’m sick. Very sick. I’m going to get treatment and I’m going to get better (not cured) and I can have a better quality of life than I’ve had in years. So I focus on my what I can do. I still try to accomplish one thing a day. It might be miniscule to anyone else but its something to me and that’s all that matters.
If you are reading this and suffering, I know what you’re going through. I understand and empathize. But keep your chin up. DON’T LET THE BASTARDS WIN!! There is help and there is hope. Count your blessings and set goal (as small as you need to) because it will help keep you going. Don’t focus on all that’s wrong. (Ok, every now and then you can throw a pity party.) I worry everyday about everything. Money, being a burden, asking for help, how its going to be living with my mom after living alone for 4 years, what my future holds, how much brain function I will get back. the list goes on. I can’t stop it but I can redirect it and that’s what I try to do. I try to just take it “one day at a time” and sometimes its one minute at a time. I didn’t do anything to deserve this and neither did you. It sucks and its unfair. I have shifted to looking at it differently. I sit outside and notice nature in a way I don’t think I ever really have, I watch the way people interact, I count my blessings. So I can’t go back to the job I loved, maybe it was God’s way of getting me out of the stress and giving me a second chance to have the life I’ve always dreamed of. Point is life is unfair. As Kurt Cobain says “Nobody dies a virgin, life fucks us all.” But you can conquer this. I’m a fighter and I’m not giving up and neither should you. No one will understand your battle, your journey unless they go through it. Just accept that people are morons and most only believe what they can see. Follow your heart and your gut. Stay strong fellow Lymers!!

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Anxiety and OCD in overdrive

Posted on May 27, 2014 by lymestorm

I haven’t posted in a while because my anxiety and OCD have pretty much taken over my life. I’m exhausted beyond belief yet I just can’t stop. My pain is better controlled (better but by no means relief) by upping my Gabapentin and adding in Marinol. When I take those 2 together it usually makes me so loopy that I just stop caring. Weird thing is that some days I’m totally ok (well relatively) and others I spent 12 hours a day where I just keep going and going, literally till I collapse. I was so exhausted and fatigued the other day that I was walking down the steps and my legs literally gave out. Thank heaven that I landed square on my ass and didn’t take another nasty fall down the steps.
Until you have one of these “invisible” illnesses you just don’t get it. Be it Lyme, co infections, anxiety, OCD, depression, etc. Its so infuriating that people are so skeptical and can’t just cut you a break, or if they really cared to know-do a little research on the internet and find the proof themselves. If I had a choice and could just “snap out of it” I would. I wouldn’t be getting up in the middle of the night to make sure everything is locked up. I would not choose to have panic/anxiety attacks. I would not choose to see blood running down my walls, the floor moving, see Jesus watching my when I wake up, nor would I choose to be constantly paranoid about bugs and see them everywhere or have them crawling all over my body. Hallucinating is not fun, especially when you can’t tell what’s real or not anymore. I wouldn’t be spending nearly $60,000 on treatment to make me better if I believed (or evidence showed) there was another way.
I am a 30 yr old female. This disease is taking away everything I have worked so hard for. Unlike most of today’s youth, I paid for everything myself – until now. I started with a government job at 18 yrs old with excellent health insurance, a retirement plan, good pay. I bought my own car and my own home and everything it. Never afraid to recycle, repurpose or ashamed to take hand-me-downs, I was completely self sufficient. Now its a very different story.
That excellent health insurance is a joke. When I was misdiagnosed with MS and was prescribed a medication that cost the insurance company $50,000 a year (that was for a SINGLE medication not to mention the other stuff I was taking) that would be the same cost for years on end the insurance company didn’t blink an eye to pay for that. But for what were spending in a single year with all my medical bills combined, they could pay for this treatment as a one time (well maybe more later down the road but at a significantly less cost) and put me in remission, get me back to the person I used to be and get back to work. Insanity! The government allows you to file for disability for Lyme but the insurance companies won’t pay for treatment. That’s where your tax dollars are going…wasted on disability for people who CAN get better. I am thankful that I have an incredible mother and several other family members who are paying for my treatment because I sure as hell couldn’t do it on my own.
The house that I worked so hard for, may have to give it up after treatment to try to get back on my feet. I lucky that I was able to medically retire from my job (still waiting for it to kick in but I’m assured its coming.) That being said the “pension” will barely cover my bills. Because of the treatment regimen I’m going to be starting soon, my mom is having to move in with me. NOT that I don’t love my mother, but I prefer to suffer alone. I don’t like having people take care of me and do things for me, Ms. Independent over here:) Its a lot to have to swallow my pride, to give up the life that I had but I’m hopeful that with this treatment, I will have a better life than I’ve had in over 10 years (of course that’s after 9 months of misery.)
I try to keep things in check but as this disease slowly destroys my body its difficult. I have a one day at a time attitude, but at the same time I keep thinking that 9 months in the grand scheme of life is really not that long. With a brain that’s not functioning (literally I am not getting the right amount of blood flow in my brain) its difficult. I’m trying to stay positive in all of this and yes, I do have my moments with an occasional meltdown thrown in far and few between.
If you have an “invisible illness” I believe you. I believe that what you have is real and I empathize with you. I hope you’re lucky enough to have a good support group (if not find one:) I cannot express how certain family members and a few friends have made this easier to stomach-all the symptoms and changes. Stay positive! You may have to be your own doctor, do the research and don’t give up or give in to a diagnosis you don’t believe in – LISTEN TO YOUR INTUITION!

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What the brain SPECT?!

Posted on April 29, 2014 by lymestorm

Went for my brain SPECT scan yesterday. Luckily I had my friend Bryan who was available to drive me because I’d have never been able to make it down and back myself. We had to go to Reston, VA (about an hour and 45 min drive without traffic, thankfully didn’t hit much on the way home either:) I was extremely tired all day, worn out is more like it but my Lyme “motor mouth” kicked in and I didn’t stop talking almost the entire time even with Valerian Root (herbal sedative) on the way down there and a muscle relaxer for the way home.
I wasn’t sure what to ex-SPECT. While I’ve been scanned in almost every way (CT, MRI, EMG, etc,) this was a new one for me. For those of you getting ready to go in for one here’s what you can plan for. The one I went to was a little different than the ones that I had found on the internet. It looked basically like a CT scanner that had a “roof” off the top of it. Once I got back there, they gave me a shot with some substance to make me radioactive. I laid on the table for about 30-45 minutes to wait for the dye to perfuse through my body. That was the hardest part of the test. The actual testing took only 15-20 minutes. If you’re clostrophobic its not bad. Worst part as far as that is concerned is that the “roof” moves in and gets pretty close to your face but you still have full view on both sides and are not enclosed. One thing that I did have some trouble with, was the first part of the scan. The “roof” spins and at the same time the table you’re on slides out at the same time…made me feel dizzy (well more so than usual.) But as long as I kept my eyes closed I was fine, in fact if I’d have never opened my eyes I wouldn’t have realized the table was moving (yes, it moves that slow:) The test was extremely easy and expect for the tiny needle, which I barely felt at all, was completely painless.
The worst part of the day was coming home. We hit slightly more traffic than on the way down, though Bryan said it wasn’t bad at all. I, however, was in a lot of pain because its hard for me to sit for long periods of time. I had told Bryan that I had to “pack” for the trip and I think he thought I was exaggerating. Besides my meds, insurance info, script and the other medical necessities that are essential for me at ANY appointment now, I had to bring my car care kit. For me I have a small bolter pillow that I take with me to run along my spine or use for neck support. I also have a massaging back pillow that is battery operated. It allows me to at least prevent any further discomfort that riding in the car might bring me.
It was a long day for me, including travel I was gone almost 6 hours (and we didn’t stop for lunch and/or dinner.)
Today has not been so stellar, I overdid it Saturday and felt ok on Sunday so I pushed myself beyond the point of exhaustion, add in yesterday and the fact that its been raining here since late afternoon yesterday, its been pretty miserable. I knew that it was going to catch up to me at some point, so at least I was slightly prepared for it all. Next 2 days are supposed to be rain filled which means I’ll probably be confined to bed until the weather lets up.
I hope that if you are suffering with this disease that you are smarter than I am-listen to your body and take it easy. While my symptoms are continuing to get worse, I still refuse to give in to it and that is huge problem for me. I was once super active, could never sit still because I had to be doing something. Even some of the girls I used to work with would tell me to be still, sitting in a chair I had to be rocking or tapping my foot or exerting some kind of energy. Despite the fatigue and pain and joint swelling and all the other crap, I still force myself to be productive in some way. Maybe the extent of what I can do has greatly changed (on “good” days I tend to get so excited about some reprieve that I take it to the extreme pushing myself to accomplish every physical task I can), I still have to feel some sense of doing something. Even being stuck in bed all day, I managed to make a few simple phone calls that I needed to, knowing that I couldn’t make some others because today has not been a good brain day. Vertigo, trouble processing words (spoken and written), double/blurry vision and terrible pain (every fiber and joint hurts.) Eventually after “accomplishing” something (also surviving an anxiety attack) I succumb to my body and medicated and managed to sleep.
My mom stopped by to check on me and the dog. She was also gracious enough to get me some dinner and run to the store in the rain to get me OJ for my breakfast (healthy, yummy smoothies:) I hadn’t written in a couple days and wanted to get an update in before I crawl back into bed. Sorry for any typos, spelling issues and or wrong/odd worse choices or sentence composures. I’ll proof it in the morning since there’s no one here to check it for me now and I’m too out of it to be a reliable source. (I did re-read it once and think I got most of the errors but who the hell knows anymore!) Goodnight and stay positive:)

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Cure Unknown:Inside the Lyme Epidemic

Posted on April 26, 2014 by lymestorm

“Cure Unknown – Inside the Lyme Epidemic by Pamela Weintraubn is a definite read for anyone learning about Lyme. Make sure you have someone to talk to after…you’ll be ready to talk their ear off about all you “new” facts and concerns. It took me 2.5 weeks to get through it thanks to my cognitive issues. Former speed reader, not so much anymore. One night I read 30 pages, only to wake up the next morning not having a clue what I read. Still I’m thankful that I eventually was able to finish it. (I think I was able to process most of it:)
Have 3 more waiting for me to pick up. Even if it takes me a while, I’m going to read them. I need all the information I can get for this war I’m about to wage against Lyme.

Posted in lyme's disease, pamela weintraub, Uncategorized | Leave a comment