Trying to Get Answers for my Back Pain

For the last year I have had chronic back pain. Really for the last two years. For the last twenty years since getting Lyme, I have thrown out my back and neck about once a year. Something changed the last two years. It was always my lower back I threw out but this time, it was my upper back.

About two years ago, I bent down to pick up my dog Oliver. I felt a sharp tear like feeling in my upper right back. I stood up quickly and thought for a second it would fade. But as the minutes went on it grew worse and sharper. I had to lay down. I took ibuprofen right away and tried to just lay still.

I really hate pain meds and I knew going to the ER, would bring them giving me pain meds.  I don't like how they make me feel. I can't stand that feeling of being so out of it and not being in control of your own body. The more they give me the more anxiety I get.

After three days of laying in bed it got really bad. I mean I couldn't barely move. I was in my bedroom upstairs and tried to get up to go to the bathroom. It felt like someone stabbed me in the upper back with a knife, like right under my shoulder blade. I made it to the stairs and collapsed. My boyfriend, Paul had to call 911. I couldn't move without  horrible spasms.

As soon as I got there they gave me ativan and some other type of non narcotic pain med. Maybe Toridal, I dont remember. But it helped a lot. I was actually able to walk out of there on my own a couple hours later. No xrays or MRI was done.

I never could completely recover though. Each day as soon as I got up, to be able to function I'd have to take ibuprofen, every four hours on a the dot. I did this for several months.

Then in August we planned on taking our annual "out east" trip so Paul could visit his family and I could visit my Lyme friends. We divided the trip up into two days but that still meant being in the car for at least 8 or 9 hour each day. My sciatic was screaming but it seemed like my upper back was going to be ok.

On our trip we took several trips to the beaches and other site seeing and family meeting ventures, including meeting up with a bunch of Lyme friends for a picnic at a waterfall. I was in pain but as long as I took my ibuprofen I could fight through it.

Then while at my friends house, I fell down cement steps leading to a pool. Ouch I had bruises on my back, side of my leg and even on the bottom of both feet.Weird right? But it didn't seem like anything "new" happened. I still went on to have my normal daily pain that ibuprofen would take of.

But on the drive home... even though I was laying down in the back of the car the whole way trying to nurse my sciatic nerve something happened. I felt ok when we stopped at the hotel to rest for the night. But the next morning  I woke up and knew I was in trouble. I had this pinching sharp pain in the same spot as when I picked up my dog months earlier and something pulled in my back. It was the same pain in the same place, only nothing had happened. I didnt bend over or anything new. We packed up, got in the car and I made about three hours from home and we had to stop an ER in Chicago. It was spasming so badly. Right before we stopped at the ER I had taken a Flexorol that the ER had prescribed me the last time I had thrown out my back but it made me have a bad reaction. My face started getting a weird hot flushing feeling like all the blood was running to my head. I couldn't stop shaking, it was so scary. I hate pain meds, they never make me feel right.

So at the ER the dr prescribed me valium but I didnt take any. I just sucked it up, and finally made it home. I thought maybe a couple days of rest would help. It just kept getting worse. At the time I was babysitting daily for my granddaughter, a couple hours a day and my boyfriend had to do all the lifting. If I tried to hold my granddaughter, who is my life by the way.. I would get instant spasms. Id don't know if my back pain is caused by Lyme or not, but man, everything just gets taken away that you love. It's like you are alive but you can't live. You can be a grandma but you can't be a grandma.

I started calling the dr and making appointments. But each time the suggestions are either steroid shots. which I have learned are unsafe with Lyme disease. So she requested I go to massage and chiropractor.

Massage did nothing for me, but it hurt. The chiropractor was so nice and sure that using a Sigma instrument would help. It's supposed to be the gentlest way to adjust your back. But man, the first time I went, I had severe nerve pain shoot down my leg into  my foot. Each time I stood on up the pain would shoot down. He wanted me to go back the next day too for three days in a row. It was all too much. I ended up doing the Sigma for three months, I think but I always just would end up in more pain then when I went in,. It would feel ok for about an hour but then inflammation or something sets in and I would have horrible pain up and down my spine, from top to bottom. Nerve pain going down my spine and branching out to my shoulders, back, down my butt, down my legs, it was terrible. 

Two news problems developed. Chronic lower back pain and this electrical shooting sensation that goes from my neck through my chest. Now everyday was my upper back still hurting but now my lower back and leg pain started. And I would get this random feeling like someone took hot oil and splattered it on me. It's like pins and needles.. with a hot or cold sensation that goes through out my neck, top of my back and through to my chest. Six months later I still get it a couple times a week. So I stopped going to the Chiropractor.

I had heard about a gene mutation that leads to a condition called, EDS or Ehlers Danlos Syndrome. Part of the symptoms were inability to heal from injuries, not being able to get numb from novacaine, chronic pain and dislocations. I asked my dr to refer  me to a specialist and she did. But he wasn't so sure... what I had. He wrote a letter to my doctor asking her to treat me as if I have EDS Type 2, but he did not firmly diagnose me with it. He said I had some signs of it but not all. He said I was not hyper mobile enough. And of course there are not blood tests to confirm either way.Another unanswered question. Do I have EDS too?

Shortly after the EDS dr visit, I was sitting at home playing with my granddaughter. I already was very careful of how I lifted her if at all. I found if I could slide her up onto my lap when I'm sitting in a chair it is usually ok. I was outside and did this and felt a pop in my shoulder. I had sublexed my shoulder.  I went to the ER and that dr told me I was just having muscle spasms.. no xrays, no catscan, no MRIs. Just told me Im having muscle spasms and gave me steroids.. yelled at me for moaning when my shoulder "spasmed" and was confused to why I would think I still have Lyme disease when  have already treated for it.

After my shoulder didn't get better I was sent by my regular dr to physical therapy where I went for a couple months working on my shoulder. The PT was very nice and said she had other EDS patients and knew that Lyme was not easy to treat and caused lingering problems. She said EDS and Lyme actually cause the same kind of damage to joints and ligaments. What I gathered from her as we talked is that the reason the chiro adjustments won't hold is because my ligaments are messed up. The chiro can put my joints back in place but without strong  ligaments to hold them they will keep sublexing or coming out of socket or place. It's been months now and my shoulder is still not back in the right place.

Sleeping is a nightmare. My back, neck, legs, shoulder all hurt. It's impossible to get comfortable. So the EDS Dr had referred me to a Rheumatologist. He told me to "Look at him, I don't have Lyme disease, so get it out of  my mind." He said even people who have Post Lyme Syndrome don't have symptoms after a year. He diagnosed me with fibromyalgia, hypermobility and spinal degeneration. So he DID think I was hyper mobile. How can every doctor have a different opinion and diagnosis? Either way he said he would call me in a week and we would come up with a plan to deal with my "Fibromyalgia." He never called. He just sent me a letter saying all xrays he ordered and all blood tests were normal. That was the last I heard from him.

A couple months ago I got up early in the morning.. and sneezed. I couldn't move. I was frozen in pain. I finally made it to my bed and took a valium, as much as I hate pain pills. I laid in bed for three days taking valium to deal with the pain. Just as I was getting able to start to walk again, something popped in my back as I lay there. Like this horrible spasming sharp pain. Again I could not move and Paul had to call 911 to come get me.

After a year of me asking my dr to order and MRI.. the ER doctor finally did. He told me he was probably going to send me to Madison to a back specialist but we'd wait on the results of my MRI. But after the MRI came back he came in and told me everything was normal, it was just back spasms and he gave me some ativan and sent me home.

Later when I got online this was my report. Is this normal?

Lower Back MRI

Comments from the Doctor's Office Mild multilevel spondylosis mild sliding forward of vertabra . Scattered regions of small disc herniation. Lots of arthritis. No significant central canal (spinal stenosis) or neural foraminal narrowing (pinched nerves).

Narrative MRI LUMBAR WO CONTRAST, 8/31/2015 12:11 PM, Southwest Health Center

INDICATION: 724.2: Lumbago

ADDITIONAL CLINICAL INFORMATION: Ordering Provider Reason for Exam: Technologist Note: concern for acute herniated disc vs epidural hematoma (history of Ehlers Danlos syndrome). Mid to low back pain. Bilateral leg numbness and weakness. Difficulty ambulating. No prev back surgery Additional: None

COMPARISON: None available at the time of dictation.

TECHNIQUE: MRI of the lumbar spine was performed utilizing multiple pulse sequences in multiple planes without contrast.

FINDINGS: There is normal lumbar lordosis. There is trace retrolisthesis of L4 on L5. Vertebral bodies are normal in height and morphology. No suspicious marrow signal changes are seen.

There is disc desiccation throughout the lumbar spine.

The conus medullaris is at the T12-L1 level and is normal in signal and morphology. There is no evidence for epidural hematoma or fluid collection.

Level by level assessment: At L1-2 there is mild disc bulge and facet hypertrophy. There is no central canal or neural foraminal narrowing.

At L2-3 there is no significant disc bulge. There is mild facet hypertrophy. There is no central canal or neural foraminal narrowing.

At L3-4 there is disc bulge and small central disc herniation protrusion type. There is small annular tear. There is mild facet hypertrophy. There is no central canal or neural foraminal narrowing.

L4-5 there is disc bulge with superimposed central disc herniation with small extrusion component. There is bilateral facet hypertrophy and infolding of ligamentum flavum. There is mild lateral recess narrowing. There is no central canal or neural foraminal narrowing.

At L5-S1 there is disc bulge with superimposed small central disc herniation with small extrusion component. Disc minimally impinges on traversing S1 nerves bilaterally right side greater than left. There is no central canal or neural foraminal narrowing.

Impression IMPRESSION: No evidence for epidural hemorrhage or fluid collection.

Mild multilevel spondylosis. Scattered regions of disc herniation. No significant central canal or neural foraminal narrowing.

Mild lateral recess narrowing at L4-5 at L5-S1.

Reading Radiologist - Dolin, Ronald Releasing Radiologist - Dolin, Ronald Dictation Date Time - 08/31/2015 13:09 Transcriptionist - NA

Component Results

Later my doctor ordered an upper back MRI which was pretty normal which shocked me as this is where most of my pain had been over the last year.

Upper Back MRI

Narrative

MRI THORACIC SPINE WO CONTRAST, 9/9/2015 12:29 PM, Southwest Health Center

INDICATION:
724.1: Pain in thoracic spine
729.89: Other musculoskeletal symptoms referable to limbs(729.89)

ADDITIONAL CLINICAL INFORMATION:
Ordering Provider Reason for Exam:
Technologist Note: Chronic mid back pain
Additional: None

COMPARISON:
None available at the time of dictation.

TECHNIQUE:
MRI of the thoracic spine was performed utilizing multiple pulse sequences in
multiple planes without gadolinium.

IV CONTRAST:
None

FINDINGS:
The spine is normal in alignment without antero or retrolisthesis. No loss of
vertebral body height. Multilevel disc desiccation with minor disc space
narrowing is seen especially through the midthoracic spine.

Segmental analysis shows no evidence of disc bulge, protrusion, spinal canal
or neural foramen stenosis with the exception of T7-8 where there is minimal
osteophyte ridge seen. Still no spinal canal or neural foramen stenosis.
Thoracic cord signal is normal. The marrow signal is normal on STIR images
showing no evidence of marrow edema. No fluid signal within the disc spaces.
Pre and paravertebral soft tissues appear unremarkable.

Impression

IMPRESSION:
Minor multilevel degenerative disc changes of the thoracic spine, otherwise
normal exam.

She referred me to a neurologist now. I can't believe in over a year in back pain noone has referred me to a back specialist but what can I do? So I am going to try Bee Venom Therapy.

Treatments I am Trying

Biomat

Bee Venom Therapy

On Feeling Isolated

I have noticed since getting sick, that I tend to isolate myself. Not online obviously but in real life. I could just stay in my apartment and never leave. When I do go out, because I do like nature, I go find trails or water and sit by myself. I tend to prefer being alone then to be with other people. Or if I go with someone else, it will be my "comfort people" to my "comfort locations." Comfort people are people who are around me a lot and understand my symptom wierdness cuz of Lyme.

Going somewhere new, or meeting new people gives me severe anxiety.

I think that Lyme made me this way because I used to be very social. Now it is hard to shower, to do my hair, forget makeup. Talking and conversation bring about neuro symptoms, like ear ringing, head pressure, neck pressure, and just trying to keep up with a conversation is hard since my attention span is zilch.

I need quiet. Sound annoys me. I used to love music, now I can't handle it. A quiet tv on in the background playing some calm show is ok as it covers up the Tinnitis. But anything loud music or screaming or any loudness, I can't handle it and get panic attacks.

What scares me is I don't mind it. I have learned to like being alone. It is easier for me. No overstimulation, no loud noise, I can control lights and smells. If I feel weird I can lay down quickly. I can be in comfy cloths and wear yoga pants all day with no judgement. It's easier to be sick alone for me. I can shake and tremor and cry and swear, and hide under my blankets. No judgement from anyone else, no putting pressure on anyone else to understand. Just me and my sickness all alone.

Anyone else feel this way? Why would a disease make you want to be isolated?

I have noticed not all lymies are like this. I have noticed a big scale, from " completely liking being alone" to "needy as hell." So I know we are all different. But I just wanted to start this conversation to hear how others feel.

Feeling Doomed and Failed by the Medical Community

I want to vent a little. Sometimes when Im reading other posts in my support group, or talking to someone, they will tell me the things they have been diagnosed with. And then they tell me the tests their doctor ordered to figure it out. I have gone to over 100 doctors in several different states. Not one has ever done anything more then an MRI.. and now with my back problems I cant even get that. Is it because im on Medicaire or Medicaid?

I dont understand why my doctors just keep ignoring me as my issues grow? Its like they just label me with panic attacks and move on. Even when i went for over 15 years for my right arm going numb, noone would do anything other then tell me I was hyperventilating.

Eventually after 15 years a neurologist ordered and EMG test which showed nerve damage from my neck down to my right hand which is stemming from pinched nerves because of three bulging disks in my neck. And still even after that test, no dr even followed up on the bulging disks or on a cyst on my thyroid that was reported on on the MRI. They didnt even tell me, I only know cuz I got copies of the tests. When I asked the dr if I should be worried about the cyst on my thyroid she commented, "it depends." then turned around and started typing on her computer. How are they so cocky? "It depends" is not an answer!!

I have changed doctors again and again but have NEVER found one that will do anything outisde a basic xray or basic blood test. Im getting back to bedbound. What do you all do to get your doctors to perform tests? How do you get them to send you to specialists? It seems like mine just want to get me out of the office and then do nothing further. I feel like Lyme is just going to turn into ALS and that will be the way that I'll die. Because all I can do is lay here. Waiting to die.

So much for Back to Living

So much for Back to Living
    
                             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.

One of the many  stitches pulled out of me.

Biopsies

1. Gyn Issues: Yep, I know...yuck. Right? I was having issues with bleeding and pain and just a bunch of "unpleasant" symptoms.

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.

More biopsies

More Stitches

 Paul went home. I sat and waited and waited and no surgeon showed up that night. They put me on IV antibiotics. The next morning a surgeon showed up and did a very painful exam. He just said my body will probably just take care of it from here. He said it's too messy up there to even see where the absess was that broke.  So at least now I know it was an absess that broke. He referred me to someone else for follow up.

That doctor just dismissed me too as did others, I still had pain and discharge and knew something wasn't right so I kept finding doctors. Finally I landed one who took it seriously. She did a full exam of my cervix and said, OMG you have stitches up there!

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.

Raya taking care of me when I'm sick. <3

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:

Appreciating the Little Things

Lyme is so weird, yesterday I felt sick but tried to push myself, and it just made me way worse. Today I felt sick, but pushed myself and felt better. You just never know what a day is going to bring. So hard to make plans or keep plans when you just don't know. Today my boyfriend and I  just went on a drive around our town and stopped at our favorite places.

If there is anything I can say about Lyme, is that it has taught me to appreciate all the little things in life, like going for a drive, sitting by your favorite stream, being able to hold your grandchild for more then five minutes. All these things I used to take for granted, now every little thing I do is appreciated.

Here are some of those things that I maybe would of taken for granted before but now, these little moments are the big ones.

When I was away out East, my daughter's boyfriend proposed to her by writing, "Will You Marry Me" on the walls with graffiti, so I wanted to see it with my own eyes.

Fall leaves changing colors.

 

Being Able to Go on Walks and Spend time in Nature

Spending Time with my Kids and Grandaughter

Cuddling with my Pets

And Boyfriend...

and Meeting Lyme Friends for the First Time...

and Spending Time with my Old Friends...

and Family

Seeing all Raya's Firsts

On most days it's the most basic things like being able to stand or shower or a cook a meal that mean so much.

Working on anything Creative

Being Able to Help Someone Else
<3

Vacay in Cape Cod and Reuniting with Lyme Friends

Visiting Connecticut Of course the best part of this two week annual trip we take is reuniting with friends who I actually consider my family. Also meeting with Paul's family who lives in Connecticut. But the first part of our trip is reuniting with our very first "Lyme friends" that I met four years ago at a Lyme gala in NYC.

That trip in NCY was the first time I went to a Lyme event. Thanks to our friend Helen, who's daughter was getting honored at the event, she gave us all a ticket to go for free. That was the beginning of my new "Lyme family." We have all been close ever since. That trip was the first time many of us had travelled or even left our home for that matter in years. We were all sooooo sick we could barely function. But we pushed ourselves and we all met, made awesome memories....and now skip four years ahead..

The Lyme Gala

The first time we all met in NYC. It's funny because everyone says, "You don't look sick." Well look at this group, noone would have any idea that most people in this picture were mostly homebound, Some still are. 

Deb, me & Tracy

Meeting Jordin Sparks in NYC.

Chris and I all dressed up at the Lyme Gala for Turn the Corner, now known as TBDA.

Hanging out with Lisa Markman at the Gala, who will always be one of my bestest friends in the world.

My daughter Brittany, drove us the whole way there. Even when I tried to get out of it, she said, we are going, end of story.

Our group on Times Square. Who would of thought this could ever happen. Eric Rutalante, Deb Rice, Lisa Markman, me, Ashley Van Tol, Chris Nimphius, Chris's friend.

Hanging out face to face with my good online friend Eric Rutalante.

Our Annual Trip Now we meet every year at Tracy's house. Tracy, and her family, Chris, Fanta, Paul and I have met three years in a row now. Each year there are new friends that join us, this year Kara joined us. But each year we meet with old friends and then Tracy has an open invitiation to any new friends that want to join us. So we get to meet new friends like Tia and Tara and Gerald! It's really awesome and I hope each Lyme friend has this opportunity where they live to do this. It's really amazing to be in a room full of people who understand, who do not judge, who are still in jammies too hehe. There is this unspoken bond between us. We don't have to even mention the word, "Lyme." We all know it's there, among us, affecting each one of us. Yet we are here, going on living, still making connections with others and celebrating life. We don't question why someone is still in bed, or why there are twenty supplement containers on the counter or anything like that. We just know and don't have to explain anything.

Tracy's cute cat Sage.

Gerald and his daughter.

Tracy celebrating her son's birthday.

 Taking a trip together to Rhode Island, East Beach

Note: The absense of Tracy. She also suffers from MG, (myasthenia gravis) and is rarely able to join us on our trips.

Paul enjoying the sun.

Fanta looking adorable as always.

Chris splashing Fanta and Kara.

Paul walking along the beach.

Chris, Kara, Fanta, me and Paul.

Looking at back at this picture, I can see where I look tan and happy and like everything is just fine. In reality I was shaking, and feeling like I was going to faint.I remember thinking, "Should I just get up and run out of here?" You know that kind of anxiety that just makes you want to run? That's what I was feeling in this moment. I don't know why, just a Lyme symptoms that through this trip plagued me. 

I was amazed by all the awesome graffiti on this bridge!

Chris, Fanta, Kara, Jenny, Paul, Michael, Ilona and Kelli.

The Waterfall we all met at.

Jenny Rush and Michael Parent being silly.

Everyone waving hi on top of the rock. 

Fanta, Chris and Kara all relaxing on top of the waterfall.

Jenny Rush looking out over the waterfall.

Me & Jenny.

Finally getting to meet my friend Sarah!

Dealing with Resentment Sometimes when we do these trips, we are not sure if we should post pictures or not. We know that those who don't have anyone close to them and can't do these kinds of functions because they are too sick, will feel badly seeing them. But we also still want to post them because we want to show that we have all gotten to a level of functionality after being homebound ourselves, so we do want to offer hope to others. We want others to know they are not alone, that there are people out there who understand and you can make a new family if you are feeling rejected by your birth family.

Judgement from within the community is the worst. I know each time I post a picture I risk getting the comment, "Oh, glad to see you're better, " or "must be nice to be in "the clique," or :"you must be rich or not as sick as me." We get all these kinds of comments on our pictures. I ask that people learn to put this resentment aside. We are all sick, none of us are rich I assure you. We have all just been sick for years and years and learned to adapt and try our best to function around Lyme. We have all been homebound too and are just getting some semblence of life back now. Isn't this what we are all fighting for? To get back to living? So we should be able to vent with each other when things are rough and celebrate with each other when things are good.

Believe me when I say getting all of us to amy destination is no easy feat. We usually end up having to leave someone behind, which makes you feel badly and then we don't end up leaving til late afternoon because that is about the time that Lymies start functioning.  None of us are functional in the morning and it takes time for us to get moving. So we leave late and have a couple hours of living. A couple hours of basking in the sun, and dipping our feet in the water. Man it is pure bliss. I know I for one never thought that I'd ever be able to do anything like that again.

Pauls' Family Then we take a day or two to go visit Paul's family and friends. This is awesome for him and nerve wracking for me since I get nervous being around anyone who isn't sick. But they are so sweet and understanding. Always so very sweet. 

Cape Cod After Tracy's is the trip to Cape Cod. I have always felt like the ocean was healing. I swear I could just sit on a beach everyday and smell the salty air and feel the waves around my feet and listen to the sound of the waves. I love it. Just love it. Since I was little I wanted to live by the ocean. There are multiple places we visit on Cape cod, here are pictures from each place.

Day 1 Chatham Pier and Chatham Beach

Chatham Pier

This is where we go to watch the seals. It's a fishing market that has a pier with fishing boats. The seals swarm around the boats and are there everytime we go. 

If there was only one place we could visit when we do this trip, I'd pick here. Look at these adorable seals swimming around. 

Seal begging for fish from the fisherman.

Chatham Beach

Skaket Beach Sunset
Paul loves photography and sunsets, so one of the things we do is go to different beaches at night to see sunsets.

First Night at Skaket

I started taking pictures of this guy, just because if looked so pretty. But we had no idea the adventure he was about to be in for.

As this man was out there on his board, a team of dolphins raced up surrounding him, played for a minute that swam off, it was amazing!

If you look carefully in this picture you can see the black looking waves..that was the dolphins swimming up to him.

This was the dolphins swimming away from him.

Here's video the dolphins swimming away. I wish I had caught the whole thing on tape.

Day 2

Provincetown

Skaket Beach

Funniness 

Chris holding up the sun.

This was one of the funniest moments ever with us, Chris was trying to post to make it look like he was holding up the sun.

Fanta holding up the sun.

Ok, so she's not anywhere near the sun.

Kara holding up the sun.

We finally get it right.

Apparently at some point on this vacation I broke my neck.

Everyone imitating the "Lisa Tilt."

Fanta carrying around Cody.

Another Sunset at Skaket

Day 3

Highland Light

First Encounter Beach

Tracy, Blake and Buddy.

The Downfall
Emotional:
Everytime we go on these vacations with each other there is a down side. When we leave, you go through a kind of withdrawal from each other. It's one thing to be online with your Lyme friends everyday, it's another to actually have someone near you face to face that totally understands what it is like to be "us." There is such a bond that grows and a love that fills your heart, that you go through a mourning when you have to leave each other again. It's like a empty hole in your heart.

Physical:
Now everyone with Lyme knows this side of life with Lyme. When you do something physical, you will pay for it. Everytime a Lymie has a good day and takes advantage, later that day or the next day they will be in pain, sore, anxious and just plain worn out, Almost like a vaccum cleaner sucked the living energy out of you. It's the price we pay. Sometimes it's well worth it to be able to live again, to make memories with your family, friends and pets.


On this particular trip, in the pictures I know I look ok... in reality I was struggling every single day. Every single one of us did. As I explained up above we basically couldn't leave the house until at least late afternoon and most of the time at least one of us could not make it at all to our little ventures.

My own issues on this trip were pain. I used to be a completely neuro Lymie. My symptoms have always been dizziness, weakness, insomnia and fatigue in the day. I usually feel too weak to walk more then a couple feet at a time. This year something changed and pain was added in. God bless all of you who have dealth with this from the beginning because it's terrible! There is sometimes no relief at all.

My back was an issue thoughout the this whole trip. I can't take pain meds or muscle relaxers, so I ibuprofened it up every four hours starting from the time we hit Chicago (3 hours from my house) until the time we got back. There were times I didn't think I could make it to the ocean, trying to get through the sand would hurt my back and legs soooo bad. I pushed myself of course! I wasn't going to drive 20 hours and not be able to put my toes in the ocean!

On the way home, my back hurt so bad, by the time we got to Chicago, it was in spasms and I tried to take a muscle relaxer I had saved in my purse from last October when I threw out my back the last time. I know I have adverse reactions to everything so I cut the pill in quarters and only tool one quarter of it. I had a bad reaction. I immediately felt "heavy" like I coulnd't talk or move. Then it felt like my throat was closing. Next I got all itchy on my leg and then my muscles started twitching and felt like little muscle contractions. I couldn't stop shaking.

We were in the middle of downtown Chicago rush hour traffic. There is not exactly anywhere to pull over and neither Paul or I have phones. So panic sunk in. I tried to breath slow but felt like I was losing control of my body. I felt like I was going to faint. As soon as we got passed Chicago to a town called, Rolling Meadows," Paul pulled into an emergency room.

Of course there was not much they could do, I can't take many meds, Benedryl makes me really sick and basically I'm a big pain in the butt with my fear of meds. But I just wanted to be monitored to make sure this reaction was going to go away. My head kept flushing, it felt like all the blood was rushing up to my head and not coming down.Really scary feeling.

Eventually they let me go home with a script for Toridal, a non narcaotic anti inflammatory and valium. A muscle relaxer that I can handle small amounts of in the past. Paul drove me to the pharmacy and dropped them off. We got home and realized I had left my purse in the ER. We called but it was gone. We never did get it . So the next week was trying to get driver's licesnses and medicaire and medicaid cards again. Fun. Also when we tried to pick of the prescriptions the pharmacy said Medicaire and Medicaid woulnd't pay for them because they were written by a doctor out of state. So no meds for me.

Since this vacation my back has been messed up. I didn't get to hold my grandaughter for almost a month! To me that's torture! Not only that but I almost feel like I got reinfected. I did pull two things out of my leg, well one from my foot and one from my leg. I thougth maybe they were sand fleas because they were biting the crap out of me at the beach. I had such a bad reaction to them. Noone else did, so I hope I didn't get another infection from them. I have felt extremely tired, back pain from hell, head pressure really bad, just extreme fatigue, like it's hard to make myself get out of bed and walking wears me out like I'm 90 years old. Reinfection? Flare from stress of travelling? Who knows, it's just not been fun.

Was it worth it to see my Lyme friends? Yes.

Will I do it again anytime soon. NO! I need recovery time lol. I'm really scared to try to drive again. Paul is planning a trip for us to go to Florida in December as I'm writing this and I'm honestly panicking. I love travelling so much and finally have someone to travel with and now I don't know if it's possible anymore if my back stays like this. Neither of us can fly so we have to drive. Our dream is to get an RV. But you know how it is in the Lyme life... noone has money.

Which brings me to the next subject before someone even says it.

How do you afford these trips? I know I don't HAVE to explain myself, but I want to. People  have helped me travel to get to Lyme protests all over the country and I feel like they might feel upset to see me travelling on these trips and think, how come you can afford that one?

Well this is how we do it. 

1. We moved to a room. Yep not a house, not an apartment, we rent a room. A tiny tiny room. We did this to save money so we can live together. Since Paul's family is in Connecticut and mine is here in Wisconsin we compromise, he agrees to live here in Wisconsin, if we can travel throughout the year to visit his family who are in Connecticut and Florida. So at least twice a year we have to do these trips. It's my compromise. So rented this tiny ass apartment so that we could save money on rent and put it away for trips. Do I like living in under 300 square feet?? Hell no, I have 2 cats and a dog and me and Paul here. It is very hard and there is no room. My little room is basically a bed and toys for Raya, my grandaughter. I hope next year we can find a bigger yet still cheap apartment because it's too small. But that was 1 sacrifice we made.

2. We signed up for Priceline to get the deals everyday. We got three nights in Cape Cod for $200 by paying early for a hotel. Yes, it was a cheap hotel, not the best hotel but it was somewhere to sleep. And honestly I like the little cheap hotels better because you can pull your car right up to your door, and get your suitcases in and be done with it. No walking through big lobbies, no elevators, no carrying suitcases all over the place up and down hallways.

3. We had enough money for 1 nice meal. That part is really hard for me. Paul does ok with it. I like seafood and when I'm in Cape Cod, I want to eat crab legs and lobster and all that kind of yumminess. But unfortunaly, we can't, so when we did go to the nice restaurant, I ate only half and took the rest back to the hotel for the next night's dinner. We are experts at eating off the Wendy's dollar menu too. Not good for you, not healthy but it's the sacrifice we made to be able to go sit by the ocean with our friends.

4. The whole first week we stay at Tracy's house. She is a blessing, not only is she my good friend, but she invited us all there for a week, never asking for money for anything, food, heat, water, pool... Thank you Tracy and Blake!

5. Gas: This is our biggest expense. We saved $300 for gas on the way down there. That includes tolls and  hotel to split up the drive. Always stop and get a coupon book in the state you are going to stay in! We got a gorgeous room in a hotel in Ohio for only $35 a night. We had enough gas to get there but not for the way back. Since Paul has friends down in Connecticut he asked if anyone had any extra jobs for him to do while he was there. Paul works in computers and one of his friends needed a secrity system set up so the first three days we were at Tracy's house Paul left everyday to go work, for gas for the way home.

6. Everything we go to is free. We visit free beaches, visit lighthouses, and go see the seals at Chatham Pier, drive through Provincetown. All these things are free. Our interests lie in photography and nature, so I guess we are lucky that we are happy to do the things that are free.

So that is it, a summary of my trip. Yep, this is all part of my plan to get back to living! That was the point of this whole blog. Reality has slapped me in the face a couple times, reminding me that no matter how hard I try to wish this disease away, you just can't. I have it, I'm still sick, but I will continue to try to enjoy whatever moments I can, while I still can.