Truffles

Truffles

This past week I did everything the doctor said not to do. The backlash was frightening. One warning from doctor is not sit for longer than thirty minutes. I spent most of Saturday and Sunday in front of the screen with few walking around breaks. The edema took over most of my body. By bedtime my feet and hands were numb, the pain was excruciating. I knew my feet needed elevating. Our bed is adjustable, I raised the foot of bed as much I could stand. I kept raising my arms in air to get blood flowing, my legs hurt just touching each other. Once feet are raised the water moves up. I’m coughing, sounds like I have pneumonia, my head feels like it’s going to explode. I’m having cardiac pain, can tell my blood pressure was high. I get the BP Monitor to confirm its high,BP is to high, a blinding headache hits and I’m questioning how much higher my BP needs to go before I have a stroke. Do I need to go to hospital, digging around find my nitro which provides no relief. My whole body hurts, areas asleep earleyer are now tingling as the blood flows back in. During the worst point the seizures start. My husband is in full snore mode, never knew the light turned on twice or I was crying in pain. I knew something was bad when the cat would not move for me to get up. Requiring me to crawl over him adding to my frustration. Truffles didn’t move until I went to bathroom for a cold rag. He has never acted like this before, he could tell from my heartbeat I guess. The following day every muscle hurt, toes burning, my shins so full of water had to change from capris to wide leg PJ’s. The back of my legs burning, hurts to sit in chair. So strange,when you rub the bone on front of lower legs, it felt like leg broken. The next day the pain continues, maybe from the water making my legs so tight.

I brought all of this on myself. It’s hard to break old habits and let a disease dictate how to go about your day. My thinking is, get as much done now before I get really bad and body is not able to get out of beds on many days. Unless you’re a gluten for pain it’s a good idea to listen to doctor. These post are not a pity party. I truly believe someone will read the post and avoid getting Lyme. I want to educate on how serious the disease is. In the worst case scenario, it leaves you permanently debilitated.   🙂 M

General Issues

Ice pick in temple headaches

Edema has moved up to knees, walking uncomfortable

Bruise very easily, finding bruises, don’t remembering hitting anything

Tremors part of week, hands shaking so bad would not have been able to feed self

Seizures during the day, not as bad as the ones at night

Tired of taking so many pills

Memory, forgetting multiple times during task, example spelling Rosacea took six looks at dictionary to get correct

Lyme Arthritis in hands all week, right hand worse

Less neuropathy after increasing RX dosage, stabbing needles when does happens

Rosacea and Psoriasis in full inflammation stage

Stayed up till wee hours several nights which contributes to all the above

17 Comments on “Lyme Disease Journal Entry Seven **Lyme Winning Me Fighting Back**

  1. wow! im just out of words, you should really listen to your doctor, but i think you already know that 😉 thank you so much for sharing and educating! there are lots of ticks where i live and the kids play outside all day long so will get better at checking them from now on for sure! thank you again ❤

    Liked by 1 person

    • Hello friend,
      Thank you so much for the kind words. I hope by writing the journal someone will avoid this painful disease. I love seeing the photos of your adventures. I have a positive outlook, one day I’ll enjoy the outdoors again. I live thru your photos. Your life has changed thru kayaking, it’s a healthy lifestyle now. I look forward to your next adventure.
      🙂 M

      Liked by 1 person

    • Hello my dear friend,
      Thank you for keeping me in your prayers. On the most painful days, I’m thankful for friends like you. I went to the doctor Thursday and the news wasn’t good. One thing I know is my focus continues on educating others of the effects and pain involved with Lyme Disease. I learned there is three times the amount of lead in my body than normal. My husband and I have to find out where it is coming from because lead is quite serious. I know challenges come our way,they come to prepare us for the next challenge. We have them for as long as we live and they are to teach us something. I have faith, I or someone else will benefit from my hurdles. My faith is not shaken. May God and Allah keep us in their arms protecting us.
      Hugs Melinda

      Liked by 1 person

  2. So sorry for the suffering Lyme disease brings-argh!! This post is important as a reminder for those who suffer or might in the future: keep moving. It all seems like such a catch-22 . . .❤

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    • Hi Mandy,
      If one person avoids Lyme, the journal is worth it. I hope it actually shacks some people up. Most don’t think about and all it takes is one tiny tick you can’t see. Then you spend a year going from doctor to doctor with no answers. If you’re lucky you do research and see how easily it could be Lyme. By the time you get the answer your in a chronic phase. There’s definitely not enough talk about Lyme here in Texas. Have you seen the new collaborative we started this week? survivorsbloghere.wordpress.com
      Still under construction but looking good. I would be interested in your feedback on the page, is it inviting, exciting, positive and able to move around easy. Have a great day. 🙂

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      • I checked out the new blog! It looks interesting. I would like to see an About page to explain more about the objective of the blog. I like the individual bios, and but I couldn’t quite figure out if these are the only three survivors that will be posting or . . .? I know you and Army of Angels individual blogs. Now, I was scooting around pretty quickly, so let me know if I’m missing the About . . .

        also, I wanted to ask about when you first noticed something wrong(when you first got sick with Lyme). I always read that if you’ve been where ticks are and then you notice this rash or circle on your skin, get to a doctor. But most people I read about with Lyme look for a diagnosis forever! Don’t the doctors look for something like this?

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      • Mandy,
        You question on Lyme is good. Here’s what happens, 50% or less get the rash and don’t seek help right away. Because Lyme has symptoms like other illness a doctor will try treating for several things, then pass you to a specialist who will run their test. The whole time you’re getting sicker but no answers. I started having symptoms 14 months ago and it could have been in my system for any length of time. The other crack in the system is there are so many strains of Lyme and other tick borne illnesses general doctor’s only test for 5 at most. The test are at best 30% accurate. The CDC is very slow to acknowledge the issue due the downstream fallout. No one will tell you to go see a Lyme Literate doctor, yet they are the only doctors who can help you. It became a witch hunt a couple of years ago and several of the top Lyme doctors had there license suspended for some period of time. My doctor was the first in Texas to have his suspended for six months. So most Lyme doctors went underground and you have to work hard to get a referral. Its crazy. Before I was given a doctor to call in my area, two separate people called me to see what I was looking for. Once you get to the right doctor, you may be in a chronic state which is having Lyme for over a year. This is the worst state and very hard to treat. You normally get very bad before you start to see any positive change. They have to use high levels of antibiotics to kill the virus which is quite sneaky. High levels of antibiotics brings on all these co-infections on top of the symptoms your already facing. Example, my symptoms are neurological which means the virus is in my brain. At the chronic stage they don’t know if the damage is perm or not. Time will tell. That’s why I working so hard to help people see this is not a little virus. People die all the time at the chronic stage. I try not to think about it. I know where I’m going and just keep moving forward.

        As for the site Willy is doing some programming work to have better drop down menus. There are three founders and one additional author. We just started up this weekend so AoA hasn’t done a profile yet and HeadGames just committed yesterday. We will add additional writer over time. I haven’t look at site in couple of hours, getting ready for doctor appt. tomorrow. We haven’t posted an about/mission for the group. I’m doing most of the behind the scenes work and haven’t made it there yet. I really wanted to get the Lyme Journal post. One thing I didn’t mention is if you do get the rash and go to doctor in first couple of days, they can treat it with 2-4 weeks of antibiotics. So few fit that mold and the CDC is not will to change the position on Lyme.Good question.

        Liked by 1 person

      • Lordy, what a mess! to think there are so few dr’s that know about it, or think to test for it. Every time I take my dog to the vet he brings up lyme tick vaccine, and human doctors don’t have it on their radar? I live in Oregon, hiking country, deer country. Wouldn’t our doctors think about? I can’t believe all you’ve gone through yet I do believe it because every person I’ve read about who has it says the same thing. It really makes me nuts.

        Like

      • There is a huge divide in the medical community over Lyme. The doctors that provide date to the CDC say there is Chronic Lyme, it just doesn’t exist. There is a ton of money riding on it because if the CDC doesn’t acknowledge, then Medicare won’t pay and insurance companies only pay what Medicare will pay. So you can see one side has their agenda. Most of the doctors with that mindset are directly or indirectly paid by medical or insurance companies. The other doctors who were treating people who were dying, said CDC and doctors you are crazy. Look at all these cases of Chronic Lyme.So what happens is a doctor is reported by the pharmacy after the prescribe so much antibiotics. Once they are turned in the whole with hunt starts. Some doctors and to have as many as 14-16 other doctors to work with them on getting enough antibiotics and stay under the radar. The CDC still buys into all people can be treated with 2-4 weeks rare cases maybe a few more weeks but not long tern antibiotics. It’s very interesting to ready about the witch hunt, the most prominent doctors in Lyme were called before the Medical board. It’s a good thing I research until I find answers. 🙂

        Liked by 1 person

    • You know I’m not wired like that. If I wait I may never make it back. Any luck on widgets? I looked a several themes but not enough widgets. Take care. I got a new camo scarf today . I got on a kick last year and off to a good start this year. I won’t wear camo to the doctor appointment. Take care.

      Liked by 1 person

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