The Roller Coaster of Life and Lyme Disease

It has now been two weeks since I had the flu. It has been two weeks since I felt I had any energy. It has been two weeks since I was not severely nauseated.

I have been off of dairy products now six weeks and I see no change in how I feel. So my take is that I do not have dairy allergies! I am expecting my LLMD to agree and to allow dairy products back into my diet!

Oh how I miss my cheeses. However, I can't help but wonder if the last six weeks of no dairy has contributed to the added weight loss. Gosh I am down an additional six pounds... a woman's dream is to loose weight!! Not like this though! I am not at all suffering from malnutrition! No I eat pretty doggone good if you ask me. I guess though it is what I am eating that has made the difference.

I have cut my carbs way, way back. I hardly have any sugar...even have cut my fruits back a lot. I eat way more protein and veggies compared to what I used to consume! Yes I was a huge carb eater. The recent no dairy took away my vanilla ice cream...Oh I really miss that one scoop several nights a week! I just can't eat Soy ice cream; its way to sweet tasting for me!

I do have some pretty nasty issues with my stomach. I am anxious to find out if these issues are related to all the pills I ingest everyday. I recently counted with prescription meds and over the counter supplements some 53 odd pills I take everyday! No wonder I am so nauseated all the time! Yet before I started on the medication/supplement regime I suffered with the nausea.

This leads me to think that this blasted bacteria has hit my gut and hit it hard! I am not sure what the new plan of action will be to conquer this issue. I do know we need to get a better game plan for me regarding this!

I know also that depression is common for Lyme sufferers. I hate to admit it but I think it has made a visit to me. Since having had the flu I find I am extremely sensitive. Why hubby jokingly said to me the other day after I said I was sick of being sick..."I'm sick of hearing you be sick of being sick" I was crushed. No I was mortified!! It took me a few days to bounce back from his comment. Once I opened up to him about how hurt I was he then felt awful and said he was only joking with me. Poor guy I made his life miserable for a few days...LOL it did feel good!!

His comment really did make me stop and take a look at how I am handling this disease emotionally. It has been 5 1/2 years of dealing with this. Five and a half years of body ache, muscle spasms, stomach issues, vision issues, speech issues, fatigue issues, bowel and bladder issues, skin issues, walking issues, cognitive issues and I am sure there is more to list; however, they escape me at the moment! I have definitely put up a good fight so far. I know I am far from the finish line of this battle. Yet knowing all of that does not make it any easier to face tonight.

Tonight I am sick of being sick. Tonight I am feeling a bit sad for me. A bit sad for my hubby and family. Sad that I don't have the stamina to do all the things I so badly long for. I ran into a coworker last night. While it was great to see her, I found I longed to be back in the office. I so miss working. So many of us identify ourselves through our work. I loved working. It was something I excelled at. I don't mean to sound arrogant but I was good at what I did. I guess I am now trying to redefine who I am. I know I am so much more than an office administrator!

I feel sad that there is no cure for Lyme disease. I feel scared that the protocol I am on is so hard on my body. Yet I understand the reasons why I must do what I am doing.

If I want to be well I have to do this. If I want to see the day where I no longer suffer all the above mentioned ailments....I have to do this. Oh sure I have a choice. I could ignore all that I now know. I could just go back to eating all the carbs and sugars I used to. I could stop the antibiotics and supplements/probiotics...but I know in my heart then that the bacterias within me would win. My days on this earth would no doubt be shortened.

I fight the depression and the anger that comes with facing this disease. I look in the mirror and embrace the tired woman who looks back at me. I love her enough to do what is best for her. I take my handful of meds with my glass of water and pray that soon I will be on an upward swing. I pray that my LLMD will have encouraging words to help me through the lull. I embrace those in my life that constantly uplifting me when I feel defeated. I do my best to return the kindness when they are in need.

I also realize that it is not just the disease that has me down. Also the recent loss of our beloved "Rockie" still stings deeply at my heart. It is so painful to loose a pet. It has only been a month. Our new puppy Mandie is such a love! She has added so much joy and laughter to our lives. It is as someone recently pointed out to me "the bitter sweet"

I know that this is life.

I also know a good portion of what I feel is also the ugly part of Lyme disease. The the reality of Lyme disease is not always easy to face. This is the road I walk lately. I know it's OK to feel what I feel. I would not be normal if I did not go through these peaks and lows...I know these feelings of frustration and sadness will pass.

I am well aware that this is the roller coaster of Life and living with Lyme disease.

Do I Look Like A Sick Person??

Well here we are near the end of National Invisible Chronic Illness Awareness Week

I have thought about living with an invisible illness all week. How could I not when I am living daily with a chronic Lyme disease. This week has been trying as my arms have really bothered me. Yet today I have real relief as they actually look very good! Barely any rash is visible. I had a rough night sleeping due to the pain deep within my arms, yet you would never know it as my arms look basically normal now.

Last night I went to Bunco. I so love being with the neighborhood women! They are a great bunch of gals! They are very supportive and curious about my disease. I really enjoy when they ask questions about Lyme Disease. It gives me an opportunity to educate. I always have a handful of pamphlets in my purse. Going to Bunco once a month takes a lot out of me. For two hours I do my best to hide the fatigue. I do my best to pick up the dice and roll them not showing I am having trouble grabbing them as my hands feel tight and swollen even though they are not. I put a lot of mental effort into not slouching in my chair or squirming around because my legs are going crazy sitting and not being elevated. I watch the women eat the prepared meal only to feel cheated and a bit jealous as I am on a modified diet to help my body fight this disease.

Sometimes it is not an easy road to be an advocate for your disease as some people think you are consumed with it. I know there is more to life than Lyme disease. I push myself daily to do my hair and make-up. I fight the inner battle daily to not remain in bed. Some days I ought to remain in bed and don't!

It is not my intentions to bore people with trying to bring light to this debilitating disease. I am frustrated that my government does not think I am sick enough to receive benefits...I know many have to appeal after the first request. I do feel it's sad we have to fight so hard to prove we are so ill.

I miss going to work and the social side that a job brings to ones life. I miss feeling proud of doing a good job. I so miss my paycheck

Yes I am ill. My body hurts, my vision has issues, I get headaches often and can't remember stuff to well. The nausea issues were old two years ago...yet they still continue. I have trouble getting up our stairs and the fatigue remains off the charts! These are just a few of the issues I deal with daily. Yet if you looked at me....well you would be shocked

Do I look like a sick person to you? I hope that people can learn compassion for those suffering from these so called "hidden" illnesses. I hope people will be more caring and loving towards someone who is on a Chronic road...it's a lonely road at times to be on.

I can remember enjoying a glass of wine with friends, dancing and enjoying wonderful get-together's. I pray the lack of socializing is temporary for hubby and I. I pray my regime of antibiotics and supplements will help us get our life back

The other day a woman told me to hang in there...that there is light at the end of the Lyme Road; however, she was quick to remind me that it just might not be the life I used to have. I see already how redefined my life is. Even though at times it's trying I am glad to be alive! Glad to be able to be an advocate! I am glad to be able to get out and do what I can, when I can to educate the public and hopefully to save someone else from the wrath of a tick bite

There are so many folks out there walking on the Chronic Road! Lyme, Chronic Fatigue, Fibromyalgia, Lupus, MS, Diabetes, Parkinson's and I know there are many more... I mean no disrespect to anyone who's chronic illness I have not mentioned!

I pray our government stops and realizes that not everyone out there is trying to "pull one" over them! I pray people will try to learn all they can when they have a friend fighting one of these hidden illnesses!

It Just Might Not Be Worth It!

As I continue upon this path to recovery I am so aware of all my body is enduring along this current road.

I have been faithful to my current daily ritual of ingesting numerous antibiotics and supplements all in an effort to kill off the bad bacterias thriving deep within me and to try to build up a badly weakened immune system.

My most recent issue is my arms. My arms have broken out in an itchy, red hot, scaly nothing short of gross rash! I have some very large blotches also. My arms hurt. The best way I know to describe this rash is to say it burns all the way to my bones. It hurts to move my arms when the rash is hot and inflamed...my arms actually feel hot to the touch! They also itch like crazy! They itch so bad that I have thought this would be a great torture against any enemy one might have!!

In all my desperation I did what I normally do...I went online and started to research the different Lyme disease forums...I went to Lymeland, Lymefriends and Lymenet...searching for posts by other Lyme disease sufferers who might have experienced what I was going through!

BINGO! I found enough good information to sift through. Suggestions as to what this rash just might be.

One thing I have learned is that when we take antibiotics we should also be sure to take what is called Probiotics one to two hours after. The reason for this is that the job of antibiotics is to get inside and kill of the enemy... the bad bacteria..unfortunately in doing that they also hit the good bacteria that our bodies need...Thus comes in the job of oral Probiotics...You take the probiotics to replace and give back the "good" bacteria! I take a Probiotic three times a day that I purchase from our local Vitamin Shoppe in hopes of keeping and assisting my system from getting worse! I also was eating yogurts with live cultures.

When fighting Lyme Disease it also is important to watch ones diet. I really did not realize just how crucial this part of the battle is! Well OK maybe I have to continue to learn how important this is! My Lyme doctor (LLMD) has told me to eat lower carbs and less sugar...Also not to forget I recently have had to endure life without dairy!

I am a stress eater. I love my carbs. I have lost over 22 pounds since I started this battle in February. With having had to put our beloved Rockie to sleep, and then adding a new puppy Mandie to our household, Social Security denying my request for benefits and struggling to make ends meet with my being unable to work...well lets just say stress in this household is at an all time record high!

As I just said I am a stress eater! I turn to food for comfort! What do you do when all the foods that have been around during all your other life crisis are now on the "no, no" list? Well I will tell you what I have done...I have nibbled. It's obviously my way of rationalizing I really am not blowing it!! Oh just a bit. OK so I have had more carbs in the last few weeks than I honestly want to admit. One day I ate an entire bag of Frito corn chips...in my defense...it was a lunch size snack-able size bag! The ones my grandchildren take to school. Surely that wouldn't hurt! Then one day while hubby and I were at the store he bought a bag of barbecued chips...Oh I used to indulge in these bags often with him on the ride home...surely just a few handfuls wouldn't hurt!

Then there were the dinners with just bit of pasta or white rice on my plate...not much. Oh and the french toast at breakfast the other day...I only had one slice with a bit of syrup...I SWEAR! Hey what about all the deserts I could have had but didn't! So I managed to still have a fairly good amount of self control!

When one is on high doses of antibiotics you have to be concerned and careful to do all you can to avoid getting a yeast infection. Now I am not only referring to the one we ladies cringe about when we hear the words yeast infection. I too was shocked to learn that yeast infections can hit different areas of ones body! Obviously at 51 I have been very blessed to not have had to endure any yeast issues. In fighting Lyme disease I had heard that yeast infections are something to be feared! Thus the importance of diet. Gluten products can help to lead to yeast issues along with sugar....Yuck!

I have taken great pride in being able to say I had been able to avoid any yeast bacteria infections. Yes you heard it correctly ....had been! Yes my itchy, hot inflamed skin led me once again to my computer and I started to research what I could about my arms. To my shock, and my horror what I was experiencing was being described none other than A YEAST INFECTION.... Yuck! Nothing short of GROSS!!!

Panic now set in! I was guilty of not following proper protocol and my arms showed it! What was the solution to rid my arms of this current issue? Athletes foot fungal cream or powder was what I was finding to be the unanimous suggestion. It was ten o'clock at night. Out of the office I came charging into the family room. Looked at hubby and said "I've got to go to the drugstore!" he turned away from his crossword puzzle and looked at me over his glasses and said "Now?" "Yes!! Now!" I explained to him what I had just discovered. Now this man is a saint...no doubt about it! He has listened to me complain about my arms for over a week. He has offered solutions of his own from putting an ice pack on them to using Alvera jell...both which momentarily did help.

He offered to take me and off we went. It took quite a while to figure out which item I wanted to purchase. There are a lot of products out there for athletes foot issues. Gold Bond Medicated Powder won!

When we returned home I made a potion of half water and half hydrogen peroxide soaked a cotton ball with the mixture and cleansed my arms. I dried them really well and I then put the Gold Bond athletes foot powder on my arms. The powder felt soothing. The itching was nearly gone. Could this really be? Could I have a yeast issue on my arms? I had heard you had to watch out for yeast in your mouth...I guess the tongue can grow black hair on it...yeah I know you're probably reading this and going OOH GROSS!! I can't tell you what great shape my gums are in! Just ask my dentist! Black tongue has really had me severely paranoid!

Yesterday I was invited to attend the CALDA Board meeting and was so worried every Lyme sufferer there would notice my arms and I would be branded as..."The woman who obviously was not following protocol!" to make matters worse when I walked into the meeting my LLMD was there!! For sure I thought I was busted! I had to wear a short sleeve top as it was already humid and warm outside and putting a long sleeve top on seemed to aggravate the symptoms on my arms even more. If anyone noticed they were certainly polite enough to not say a word.

Today my arms are doing so much better. I am now on day 3 of using the Gold Bond powder and already I have seen a tremendous improvement! The pain in my arms is nearly vanished.

As for what I have learned from all of this?

I have learned that when I go off protocol...I am the looser. No one else. I am the one who will have to suffer and endure the consequences of my actions. Is the corn chips, potato chips, rice and fruits worth all this...absolutely not!

I might have fallen off program briefly...As I sit here my LLMD's words to me in the beginning of this battle once again resonate throughout my mind..."Go ahead and have your ice cream once in a while; however, you may find the way you feel the next day it just might not be worth it" I have heard this in my mind over and over since February on this journey when I stumble onto old habits!

No kidding..."it might just not be worth it" that's an understatement for sure!!!

Please remember I am not a doctor. I am not advocating you use any products or methods or am I attempting to diagnose any issue. All contents are purely from my own personal experiences and shared for your entertainment only.

Meet "Mandie"

It has been nearly a week now since we had to put our beloved "Rockie" down. The heartfelt deep ache still so fresh that my throat still knots up along with my stomach every time I think of her. Our neighbors and family have just been wonderful with their caring words, cards, flowers and apple strudel; all in loving and caring attempts to share and support for us during our time of grief. I can't count how many times over Al and I have been told by the neighbors "She might have been your dog; but she was the neighborhoods pet too!" So wonderful to know so many were touched by this special angelic dog that we were blessed to be loved by for nearly 12 years.

Thursday morning when I awoke hubby was in our office in front of our computer searching for Labrador Retrievers. Streaks of tears rolled off his cheeks as I approached him from behind. He turned to me and said the thought of not having Rockie's loving affectionate touch around. was unbearable. I looked at him and said...."but you want to get another dog already?" We both were quick to acknowledge that Rockie could and never would be replaced. But her loss left a sudden void that along with everything else we have had to deal with was nothing short of heart-wrenching.

Hubby was quick to point out how Kona was not responding to us since we returned back home without Rockie. He was right. I hated to admit it. When we came back home that evening Kona went straight to the garage door. She insisted on being let out there. I did. She went to the car directly to the passenger door and I opened it. She looked in. Sniffed the edge of the backseat, looked up at me and walked around the other side of the car. When I brought her back inside the house and showed her Rockies collar on the fireplace hearth she looked at me, then at Al and laid down. Since then it was difficult to get her to go outside on her leash. She is 85 pounds. When she does not want to move she has a way of stiffening her body. She is like a cement block! Her tail had stopped wagging and she no longer was running the house barking out the windows as passers walked by.

There could be no doubt about it he was right we were all depressed.

I thought about how I am currently not working. I thought about how ill I am. I thought about how much work and the cost a new puppy would be. I also thought about how our life lately has been dull. With doctor appointments, my fatigue and unable to go many places there could be no denying that our household has been in the midst of some serious daily doldrums.

But a puppy??? I told Al all the why not reasons I could come up with. I also got a bit excited about the thought of new life in our home. When our daughter and her family come to visit, the grandchildren definitely have a way of brightening our home. We laugh, giggle and a renewed spirit wells up within us when they are here. Could a puppy do the same? Surely we were crazy for even contemplating such an idea. Rockie had not even been gone a week yet.

I told Al I would not purchase a dog through the Internet. He agreed. I suggested we go back to our veterinarian office and inquire if they had any clients that recently had a litter or any coming litter due. We then talked about what breed of pet...we both agreed it had to be another lab. I was firm in my stipulation that no black lab would even be considered; the decision was mutual!

We quickly got ready and headed off. Hubby elected to wait in the car as I went into our veterinaries office. We had become a familiar couple there since they have cared for Rockie since we moved here nearly eight years ago and since Kona's joined our family six years ago. They have held our hand when Rockie was mauled by a pit-bull years back and through Kona's recent cancer surgery. I walked through the doors. Tears started to well in my eyes as I approached the counter. I was quick to notice the door on the other side of the center reception isle. The door where just days prior we said our final good-byes to our beloved Rockie.

Then I did it. I mustered the courage and asked what felt to be the unthinkable. "Do you have any clients that have recently had a litter of lab pups or are expecting?" All the girls behind the counter couldn't have been sweeter. They all smiled and were excited to hear we were contemplating a new family addition. They joyfully shared that Dr. Odom had a new baby and for me to retrieve my hubby from the car as they went to the back to retrieve the new pup. Quickly I ran to the door and motioned Al to come inside. As he walked in the door one of the gals walked into the waiting room with a yellow Labrador male pup. She proceeded to introduce "Big Blue" to us. He was nothing short of adorable. I was quick to say..."Oh I don't want a male!" We were told there was only one female left to their knowledge. I couldn't believe I heard myself request the information where the pup was located at.

With a flier in hand, tears in our eyes we left the office. I grabbed Al's hand and said "I don't know what do you think?" he quickly retorted back " I don't know what do you think?" After much bantering back and forth, after all the pro's and con's of the addition of a new puppy to our family...I made the call. The appointment was set and 6:30pm that night we were on our way to check out the last female in this litter of pups!

Now you all know already how this ended up...Yep it was Love at first sight. She is the sweetest 18 pound, six week old yellow lab we have ever seen...At least to us she is the cutest! With puppy in hand we proceeded home, tears down both our cheeks as we made the twenty minute ride or so home.

Rockie forever in our hearts. Mandie our new baby in the our arms already helping heal what ached so deeply.

We were a bit nervous as to how receptive our 85lb Kona would be to this new family addition. Kona has always been the "Alpha" dog in the house. How would Mandie be accepted? For the first time in days Kona's tail was once again wagging. It took her less than two days to get in and play, bark and run throughout the house chasing after Mandie. The bond of these two female dogs has began.

An entire household now laughing and oohing and awing over the new addition! Family and neighbors coming in and out to greet the new baby!

Welcome Mandie to our home!

Welcome Mandie to our family!

Love You Rockie

As many of you already know in 1998 my hubby sustained and miraculously survived a two story fall. I will not go into a lot of detail about what transpired during and after his fall. What I will do is sum up for you that he spent 10 days on life support. He broke so many bones in his body and had a blood clot on his brain. The doctors did not feel he would survive.

Short part of this long story is my loving hubby survived...he is one of God's miracles!

He came home from the rehab center just one month after his fall; still needing much therapy. I had to hire a speech therapist, a physical therapist and a daily living skills therapist.

The rehab center wanted to place my husband in a group rehab home for brain injured men. upon his discharge; I refused. I wanted him home with our daughters and myself. I felt he would improve and heal much quicker if he was with all of us daily. I was right!

Today you would not even know that this man survived such an ordeal!

I attribute a lot of that improvement to "Rockie" a black lab that was brought to our home the night we celebrated his return home. I had to put our 14 year old American Eskimo " Snow" down because she was very old and failing. She was loosing her eyesight and having accidents in the house. The assessment team from the rehab center had to approve the safety of our home for my husband's return. They required the removal of "Snow"...short part of this part of this long story....I did as I was told to be able to get my hubby home where he belonged...

On the night my hubby returned home he was devastated to learn his beloved pet was gone. I was the guilty party. We had 14 family and friends over that evening celebrating the miracle of this man walking back into his home after the horrendous ordeal he had been through. (Miracles do happen! I wake up next to one everyday!) He was devastated and inconsolable. Our daughter had a friend that had a litter of black Labrador Retrievers. Our daughter asked if she could bring one of the puppies over to see if we could calm my husband down. My orders to her were to be sure it was a female pup.

Fourteen people in a crowded room and this 6 week old female puppy came barreling through the door and beelined straight for hubbies lap! In my mind I still can see him situated on our couch, frail looking, a fresh scar in his half of his upper scalp from brain surgery, and a cast to his elbow! To everyone's shock and amazement how on earth did this puppy know she was there for him? It was obvious to all of us this dog was special. Immediately my hubby gave the lab a name...It was to be "Rockie" we had made a trip a year prior to Colorado and he had fallen in love with the beauty of the state. Especially the Colorado Rockies...Thus "Rockie" was named after them.

She gave this man a reason to get up and face everyday. He had to feed her, walk her, bathe her, and most of all love and care for her while he was learning the same daily living skills all over again for himself. I had to work and our daughters were both in school. Rockie filled this mans days with joy and laughter. When I would return home at night he would filled with joy of unending tales of how she had nipped his toes or how he had burnt the couch trying to dry an accident she had on it with the blow dryer. One day when folding laundry with our daughter at the kitchen table she came running across the room leaped into the air slid across the top of the table grabbed a pair of freshly folded socks and continued on her way...to this day the table still bears her claw mark across the top of it!

The bundle of life, enthusiasm and eagerness to please was integrated quickly as there could be no doubt she was an important family member! She would sleep at night at the foot of the bed on my husbands feet. A year later when I was emotionally having troubles dealing with all we had been through she had an uncanny way of knowing the bad days. She would force her nose into my lap and gently nuzzle me to put my attention to her.

Seven years ago we relocated to our present home. Al and Rockie became quickly well known throughout our neighborhood. The two of them had a daily ritual. Five a.m. they would take off for their morning walk. Hubby porches all the neighbors newspapers that are thrown and left on the sidewalks. Yes no doubt Rockie and hubby are well known. her on our street! She was a tough old dog and survived a pit-bull attack about 5 years ago. I still can hear her cries of pain as to our horror we watched helpless as the dog dragged her from one corner and back. Yet she was smart enough to keep her head down so the dog could not get her throat. Instead her ear took the blunt of the attack. She like her master survived the unthinkable! Once healed that ear seemed to always itch and bother her.

Six years ago we added another pup to our family..."Kona" Rockie has tolerated Kona and her pushy ways ever since she joined our household. Often when we purchase toys for them we are sure to always buy double the same...as Kona will never fail to go over and steal Rockies right out from under her...yet Rockie with her loving attitude would never retaliate...no she would look at us as if to say "are you going to let her do this?" Yet when Kona had cancer surgery recently Rockie slept nearby and kept a concerning watchful eye on her.

Unfortunately, for us dog lovers our pets lives are all but to short. Rockie had been having trouble with her back legs for quite some time. Her issues actually started close to the time I got struck with Lyme Disease. When I found out I had Lyme Disease we were sure right away to get her in and have her tested. She came back negative...but I had my doubts. She had walking issues like I did.

Before we knew it hubby had a daily routine of ministering several different pain meds to her. Her morning, afternoon and evening walks were more difficult and took much longer. She now seemed to labor in breathing as her throat muscles began to weaken.

Yesterday we kissed our last kisses. We gave our last loving strokes and said good-bye to a beloved dog who lived her life for us! A dog who gave love with no strings attached. Who unconditionally gave a man the will to live and heal! She was our shinning light sent from heaven.

Kona is lost without her buddy to harass and we are broken hearted. Devastated. These are the parts of life that are difficult. Our pets bring so much to our lives.

I always said Rockie earned the right to be an indoor dog...she was spoiled no doubt about it, but she gave so much to us...she did so much for my husband...his pain and loss right now are nearly unbearable to endure.

Our lives were made better because they were touched for 11 years by a faithful friend and companion! One who always was filled with a joyful loud bark when you came home and a tail that when it wagged hit and moved everything it came in contact with. Her life touched so many lives.

We will always Love you Rockie! and forever miss you until we meet again!