To make a friend, I have to change Lyme Disease

As I struggle to do my taxes, among yet another brutal week of treatment, my credit card transactions tell me something very clear that I pretend doesn’t exist. The transactions read: Doctor, doctor, supplements, doctor, supplements, and so on… 3 years ago it read: My favorite bar, a new restaurant, clothes, crossfit classes, 5k registration… Its not only that my life has become all about my health, its that there is no friendship in my transactions.

Almost ever previous transaction was a socialization with friends. We went to other countries, we worked out together, we tried new foods. I had 2 expenses on my credit cards for dining out with friends for the YEAR. Loosing the people I thought would be my friends forever has been something I try to forget about constantly but it never stays hidden. I don’t consider myself a sick person or a spoonie but as I look over my credit card statements I have nothing to disagree with that labeling.

I very much consider a friendship a two way street and I’m sure some of the burden falls on me. I am not a perfect friend. I just thought my friends would be there for me when I needed them.

At this point, my friends are 90% people who share my illness. They are the ones who understand the suffering without saying it, the ones who let me cancel plans without an interrogation, who understand why I am broke and struggling, because they unfortunately get it because they live it too.

When I sit pondering how to raise awareness for Lyme Disease, I’m at such a loss because even my friends don’t care. How am I supposed to rally strangers if I can’t even rally those who were my friends? I have no doubt I will return to an at least functional level one day but I frequently worry about what my friendships will be like. There’s no logic in returning to friendships that weren’t there for you but how do you find the ride or die friends? I feel that having all friends who are struggling with Lyme gives you a narrowed view but at the same time how do you pretend to be normal when you arnt? How do you explain what you have been through without looks of pity or disregard?

As I finish counting transactions, the answer is still the same, that I have no idea how to maintain relationships with friends through Lyme. Honesty is scary and faking it is insincere.  All I can hope for at this point is that my awareness efforts will some day make a big enough impact to be understood in the way cancer and HIV is now. If they can do it, I can do it. And, no my taxes still are not finished.

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To make a friend, I have to change Lyme Disease

Ozone was good, but the doctor was not.

While in Pennsylvania I started hydrocortisone, had a small dose of DIV ozone, and did an ozone sauna. I had intended to do more ozone but the hydrocortisone made me so sick I couldn’t do any more ozone. I had been warned that this was not a good choice but I tried to trust the doctor. By the 5th day on it, I was shaking, dizzy, muscle aches, the usual low adrenal issues I worked so hard to get above. When I asked the doctor why this was happening he said he had no idea. Minor detail this was after I had to sit and wait for him for over an hour when I already had a DIV appointment.

A short version is I’m extremely disappointed in the care I received, especially for the price. I paid hundreds of dollars to get more sick. I will be having a phone consult next week to address the issues with him. I would really like to continue ozone, especially since I paid all his costs to get in his care but I do not want his medical advice anymore. We will see how he handles it.

By Monday, I had to call The Country Store (my favorite amazing herbalists). Charlie gave me 2 great recommendations and I went from almost having a public meltdown over nothing to fine within almost 15 minutes. It seems crystal clear to me that I need to move my care completely to The Country Store. My plan at this point is to finish my last few rounds of Bartonella antibioitics with Jemsek, follow The Country Store’s recommendations, and get some more ozones in if possible. While I think Jemsek’s antibioitic protocol has been essential to my improvement, I think the herbal method of restablizing the body while removing the toxins has been what is giving me the ability to function back. What is most important is that I can count on them. I am used to calling a doctor and they tell me they don’t know what to do to help or making me wait for days, Liz always is there with a suggestion. Every call I’ve ever made to her has resulted in a significant improvement in symptoms if not within hours, within the days it takes her to get more herbs to me. Being able to rely on someone for great care when things are bad is something I cant tell you how important it has been to me.

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Yesterday for the first time in years, I drove myself, alone, down to the drug store and back. While this isn’t a big deal to many, this is huge for me. I didn’t feel good, my anxiety from not driving in years was kicking, but I was able to get through it. This is one huge step to getting my independence back. To be able to do minor things like get my own food, pick up my prescriptions, and maybe see my friends again is something I have been dying to get back. I am terrified and can’t wait for my next drive.

Yesterday was also a magical day that many LW projects had major things come together so things are looking up. Back on the right health plan, LW plan, and life plan. So with a fist full of antibioitcs and my side kick, I’m jumping back in. Life full steam ahead! And by full steam I mean nap time!

Ozone was good, but the doctor was not.

My Lyme & Autoimmune response

As many of you know, I have been treating with Jemsek Specialty clinic for over a year now. I have made a lot of improvement but as they tell me I will be entering my last round of intense antibiotics and I am still not my normal functional self, I have found myself moving to the belief that antibiotics are not the full solution to Lyme Disease.

I want to make it very clear that I am still an advocate of long term pulsed antibiotics. They have taken my life from couch-bound daily to being able to be functional around the house and having more and more good days going out. That being said, I think there is a large component of Lyme that is the autoimmune systems reaction to Lyme that we don’t understand. Like some people are allergic to foods, it is not that the food is bad but that our systems over react to it. I think the antibiotics have done a great job of killing the invaders but that much of my issues come now from my body being unable to settle back into its normal ways.

I will be finishing my last rounds with Jemsek, I have added in herbals, and I will begin DIV Ozone in October. My intent is to continue to use herbals to kill any invaders that antibiotics did not get while using Ozone and other alternative methods to calm my autoimmune issues. My new doctor is optimistic that I will be able to calm my neurological flares that keep me from driving relatively soon.

While all this treatment has been more expensive than I can afford, I am optimistic that it will all be worth it soon and I can return to a functioning lifestyle where I can do more to bring Lyme awareness and return to my career that has been left for dead over the last two years. I have to admit I am thoroughly exhausted from running from place to place trying to cure this disease and frequently struggling with finances, I feel closer to the end than ever before.

My Lyme & Autoimmune response

Health update: Bacteria strikes again

I’ve been struggling to write about how this week has gone without it sounding like a pity party, but I think I just need to be honest and admit it kind of is.

The goal was to return to my city, socialize with friends for my birthday and see how I held up trying to return to a somewhat normal life, then go to Pennsylvania for a cousins wedding. At this point 90% of those plans were cancelled, not a birthday thing was done. I was not feeling great coming off an antibiotic round so I waited to see my friends. My birthday night I started into what was the beginning of a brutal herx paired with severe stomach pain. After a few days the herx ebbed but the stomach pain was more intense. Finally Friday morning, I woke up in screaming pain and almost threw up just trying to get water down. It was time for a hospital. After a very long wait and more than a few tears, the ER doc diagnosed me with a  intestinal bacterial infection and sent me on my way with a script for more antibiotics. He was enough to check with my Lyme Doctor that this was the right move for me.
Its been 5 days of treating the stomach infection and the pain is down to mild discomfort but the gastro issues wont leave and the heavy antibiotics are making me dizzy. On the plus side I’m sleeping about 14 hours a day so I can avoid some of the symptoms.
Now that I’ve missed most of my plans I have to decide tomorrow if I will miss them all and cancel my plans to go to PA. I very much want to go see my family, but it really is miserable to feel awful and try to fake it.

As most people who are chronically ill know, its a constant game of guessing how bad you will feel. Do you push through or forgo the chance. I think I will sleep on it and try to think optimistically. I am a warrior, but even warriors need recovery.

Health update: Bacteria strikes again

Why you have to be your own advocate when your doctor wont.

About one year ago before I was diagnosed with Lyme Disease I started going to therapy. The not knowing if I would ever not be sick was crippling so I sought help. A year later I’ve decided to stop therapy due to scheduling and other issues. In our last session today my therapist brought it up that if we had more time he would have liked to investigate if I was helpfully or unhelpfully distrustful of doctors.

I’m very proud of myself for not yelling at him. But I wanted to put it out there what I told him.
For 1 year and two months of the sickest time of my life, every doctor I saw gave me no help. No diagnosis, no definitive treatment, no hope. They either said you can see if this pill works, stress less, or some flat out told me to deal with it. I have the most common bacterial disease in the country and literally 40+ doctors were unconcerned and unable to help me. I would either constantly rotate through their office or if I spoke back about their lack of ability to treat they would fire me as a patient. Upon following up with all these doctors to tell them how they failed, not a single one has asked for more information. So when I say I distrust medical professionals its 100% based on experience in their lack of expertise and lack of ability to do their job.

Do I still see doctors? Of course.Do I follow their protocol? Defiantly. Do I ask questions, do my own research, and question treatment. You bet I do. In a medical world with so many issues, we have to fight for what is best for us.

One truly awful doctor at one of the most prestigious medical schools in the area said to me that I needed to learn to live with “whatever was wrong with me” and that there was nothing anyone could do to help. If I had listened to his advice I would probably have killed myself because I was unable to cope with how sick I was. Instead (after a large breakdown) I still pushed, called, and got into every doctor who would see me and eventually found the one who has helped me get my life back.

Being your own advocate is a Herculean task and chronic illness is not for the faint of heart. However it is never over until you give up.

Why you have to be your own advocate when your doctor wont.

How do you plan when yo don’t know the plan.

Since I became sick with Lyme Disease I’ve been trying to figure out how you plan for your life when you have no idea what you will be capable of. I kept wishing someone would just tell me when this is all going to be over so I could start setting up job interviews for that day and put a deposit on an apartment but of course its not that easy.

Its been almost 2 years exactly since I got sick and it is finally time to start considering the “getting better phase”. Its hard to consider this phase in the middle of a herx and other issues. But with all the things that should make me feel awful, I’m still able to walk around my house and do easy things. Leaps and bounds of improvement from where I used to be. Next week, I plan to try to start driving again. Its been almost a year that I’ve been off the road so this will be a huge step forward for me.

My doctor slipped in a comment a while ago that after this round of medication we might move to “maintenance” antibiotics. While I’m not sure we are to that point yet, its encouraging that this could be coming to an end, but scary that I don’t feel like myself again yet. I’m between doing a ton of research on alternative treatment vs generally planning what I will do if I’m healthy. Its a hard crossroads to be at, not sure if I plan for the worst case scenario or the best. I guess I will just plan for both and try to be an optimist.

Above all this pondering I’m so absolutely thankful to be improving. To start having worries like a “normal” human, do I still have friends I could go out with? What are my job prospects? And further to be able to get on my feet and start doing more for Lyme Disease Awareness.

How do you plan when yo don’t know the plan.

When you have it all figured out, you don’t.

At 9 months in to treatment and I’ve learned a ton about Lyme. I’m pretty good at knowing my symptoms, knowing how to detox and what to ride out.  Congrats Lyme, this curve ball got me.

For the past 5 days I’ve been off antibiotics and had no changes in treatment. Yet I’ve increasingly had stomach issues, severe weakness, and disorientation. Yesterday I couldn’t take it much more and went to a Patient First. Typical they tested me for the flu and drew blood and agreed I appeared perfectly healthy but recommended I go to the ER because they had no idea what was wrong.
Thanks incompetent doc, if I wasn’t stressed before I sure was now. I got to the ER doors while on the phone with the emergency line at my clinic. Fortunately one of the nurses was able to walk me through what was going on and she agreed that the ER would be about as helpful as the clinic. She agreed something was wrong with my stomach causing neurological issues.

While I still sit and wait for a call back on what to do, I keep thinking that it is ridiculous Lyme patients have so few resources. This isnt a specific Lyme issue, its solely that my stomach is messed up and a doctor can’t help me with that. When did doctors get so bad or was it always this bad? How is this a multi million dollar industry when they cant fix a upset stomach? I have no doubt now why holistic medicine is making such a  come back. This is getting ridiculous.

When you have it all figured out, you don’t.