More Like, Dawn of the Dead....
That's how I feel anyways. I feel like the universe laughed at me when I actually thought I might get back to living. I mean, I am alive. There are good things in my days, my beautiful granddaughter, my kids, Paul, my pets, the Lyme and EDS community which I love to pieces.
But damn, everything hurts.
Part of me wonders if it's my punishment for not retiring from activism all the way like I had planned. I have a hard time just dropping out of the community, it's been my family for many years. I have found a good balance. I'm not planning or coordinating protests anymore or anyting like that. Mostly I work on my website everyday and help Lyme friends where I am able on Facebook. I am working with my friend Karen Smith from Australia on International projects. None of this stuff is stressful though. I let go of all the stressful stuff.
I thought that letting go of the negative would allow more positive in.
Instead what I have found is pain, lots and lots of pain and anxiety and I'm not sure why? Is it just nature? Is it just that this is how life is? Am I doing something spiritually wrong to cause this? Was I a serial killer in my last life?
What can I do to change this?
My Issues:
It seems like I can't heal anymore. Last year I was doing pretty damn good. I mean I was still sick of course, but I had come to a baseline feeling of sickness that I could handle and still function with. I was more on an even keel. I could travel a bit and run to Walmart if I wanted.
This year is different. And the timing sucks, because I have a little grand daughter that I want to cuddle and hold and play with. I have a boyfriend and family I want to do things with, travel with. I have friends around the world I want to meet, face to face.
While I have been trying to treat or deal with Lyme for so long, I had let other things go. My dental health, some gynecological issues that I was having. I just concentrated on the Lyme stuff and these other matters were put on hold until I could mentally, emotionally and financially deal with them. So when 2014 rolled around, I made it my goal to fix these issues. I knew I had to deal with them no matter how scared I was to do it.
Enter the "Not Being Able To Heal" Ordeal.
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| One of the many stitches pulled out of me. |
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| Biopsies |
I had been having pain in my lower abdomen. I kinda chalked it up to, "eh, it's either Lyme inflaming things, an ovarian cyst or divertulitis flaring. I ignored the pain and made the mistake of not going to a doctor.
Well one day while walking home from my daugher's house, I felt a gush of something wet come out of me. I got home and saw blood and mucus and yuck, just grossness. What the heck was this? Paul drove me to the ER. After making me wait an hour in the waiting room, and then another hour in the examining room the doctor finally came in and bombarded me with a bunch of really nasty questions that I won't even repeat. After examining me he apologized and said he was sorry for what I was going through and that I would need emergency surgery. So they moved me to a room in the hospital to wait for the surgeon.
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| More biopsies |
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| More Stitches |
Turns out, my body had rejected "absorbable" stitches that were put in me five years ago during a hysterectomy. Just like how your body tries to push out a splinter in your finger, my body was trying to push out the stitches through my vaginal cusp.
Now every two or three weeks I get to go to the gynecologist, get the stitches pulled out, get biopsies around the site done and get cauterized with silver nitrate. I have what is called granulomas that they have cut off, and granulation tissue that they use the silver nitrate on. I have had at least 6 appointments now and still have more to go. There is no knowing how many stitches are up there and how many will need to be pulled out.
This is incredible personal and a bit embarrassing but I'm posting about it anyways in case anyone else might have this issue. It may help them realize what's wrong.
2. Dental Issues: I got sick back in 1991. Since then I have lost about a tooth a year to Lyme. They just break in half or cavitate from the inside out and need to be pulled. Unfortunately as time went on, I started having bad reactions to Novacaine with Epi in it. My heart would race, I'd feel like I was jumping out of my skin and my body would start shaking. I would feel like I was going to pass out.
So my new dentist has been trying to use Carbocaine and some other stuff, but nothing seems to numb me all the way or for long enough.
When a pulp cap that I had done failed, I decided I did not want to get a root canal done. I opted for just an extraction. Unfortunately after a half hour of trying to pull the tooth, my dentist realized I was not going to get numb enough. I can tell she was frustrated and blamed me for it, and my anxiety.
Whatever, I don't even care. I'm so used to doctors not believing anything I say I don't think it can even affect me anymore. I am numb to ignorance and judgement by doctors.
I have about 12 teeth left in my head. I had ten cavities. The first three that I got filled, well let's just say, it hurt. I can't seem to get numb enough and can feel that drill. Sometimes I tell the dentist and she gives me more, and sometimes I just sucked it up.
She referred me to an oral surgeon. I asked that two teeth be pulled since they were both pretty bad. It really sucks because now I have only two molars, on opposite sides. I have to chew with my front teeth. But anways, I was really nervous to go under anethesia as it always makes me sick. But it actually went very smoothly. I wasn't even very sick when I woke up. Usually anethesia makes me throw up for days. But I was ok, thank God it was done.
Now it's been two weeks since that extraction. I now have a bone sticking out. I don't think it's a shard that will come out on it's own, I think its part of shattered root or jawbone because this one won't move. I called the office and they said I should come in but I'm scared because how are they going to remove it? I can't get numb, and it would be silly to give me anethesia to file down a bone. Am I going to have to just suck up the pain again? Grrrr.. why couldn't it have just worked the first time, why do I have to constantly go back for failed procedures? Why can't I just get numb?
I have researched this question again and again. What I have found out is there are some people who can't get numb:
1. Redheads have an issue getting numb.
2. Anxoius patients have a problem getting numb.
3. People with EDS have a problem getting numb.
I struck out 3 times. No wonder.
So anyways, as with the stitches, I still have 5 teeth to go. I am leaning towards just letting my teeth go. Just letting them get bad enough so that I can just get them all pulled and get dentures and be done with it. I don't want to go through anymore dental torture to save the next 5 teeth, knowing it will cost thousands of dollars and may not work just like the prior ones didn't. It's a waste of money and I certainly don't have money and it's just adding to my anxiety. These monthy dentist appointments were just painful and expensive and in the end, I ended up losing two of the ten teeth already, with 5 more to go.
3. Back Pain- This is the worst most debilitating thing I have gone through besides my stroke. This has me basically immobilized. About once or twice a week I will feel ok enough to go to my daugter's house or to run to Walmart with Paul. But I certainly cannot drive again. I can barely be upright for more then 15 minutes or so and I have to lay in a certain position most of the day.
I have had back issues for years, since I first got Lyme. I would bend and throw out my lower back. I'd be laid up for a couple days to a week and be back on my feet. But this is different. This started with pain in my upper back. It is now around my rib cages and my whole back. I almost feel like there are little pins pricking me around my ribs. I don't know if it's connective tissues, muscles or nerves. I just know it hurts, all the time, 24 hours a day. I wake up crying, and I can't hardly hold Raya, my granddaughter. I can sit her on my lap but Paul has to be near me always otherwise one wrong move and boom, I get that sharp pain and I'm down for days again.
As usual, doctors aren't being much help. So I am trying to figure things out on my own.
1. I bought a TENS machine
2. I am trying Power Strips Patches that are made of elemental germanium, and the inner layer consists of a proprietary blend of fermented Korean red ginseng, Alpha3 CMP™ marine phytoplankton, and a petroleum-free, water-soluble adhesive for safe, continuous daily use. (All natural stuff since I can't take pain killers or muscle relaxers)
3. I am trying accupuncture.
4. I am doing massage.
5. I want to find someone who does myofascial release but haven't yet.
6. Started an anti inflammatory diet.
Usually when I throw my back out it last a couple days.. this has lingered on now for four months straight with no relief.
Xrays showed that I have mild scoliosis and arthritis due to an injury I had in the past. (I'm not sure what injury that was, but that is what my doctor's nurse told me.)
Nothing suggests why my upper back hurts so badly. No MRIs or Catscans have been ordered. I do have an appointment with and EDS doctor in Madison, Wi in March. Yes the doctors for EDS are rare and there's long waiting lists, just like with Lyme. But I urge all Lymies to look into EDS too. Ehlers–Danlos syndrome has a lot of the same symptoms as Lyme. It is believed to be a gene mutation that causes a connective tissue disorder. The more I research it, the more I believe that EDS and other gene mutations may be the reason some of us with Lyme cannot get better.
The mutation causes us not to be able to produce proper collagen. Without that, it is hard to heal normally from any injury or inflammatory disease. So you put these two together and bam... chronic illness. EDS would explain all three of my conditions above and why I can't seem to heal from them.
Click Here if you want to look more into EDS.
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| Raya taking care of me when I'm sick. <3 |
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| Paul has stepped up to the challenge of being "Grandpa" really graciously. Since I can't hold Raya she plays next to me on the bed and Grampy holds her when she gets tired or wants to be held. |
So anyways, that is where life stands right now. I have my curses and I have my blessings. Like all of us. <3 I hope that those reading this, have blessings that still outweigh the curses. I do and so I continue to fight on towards better health. I just hope our community can catch a break soon. Hoping that there are some breakthroughs soon. Seeing the article, Study: New Test For Finding Drugs To Fight Persistent Lyme Disease gave me some hope. Knowing that there are organizations out there donating and generating research is a good thing.
My friend Chris posted this today and I'm trying to hold onto this thought:
