Coming up next:

My first trip to a dispensary. Guess what? It's not what you see on tv!
Stay tuned!

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Friday, July 26, 2019

Why do I even bother with new testing?

You've been warned!
We've been home for a few days now after being at Cleveland Clinic for more testing. This time they were looking for POTS (Postural Orthostatic Tachycardia Syndrome). According to the Cleveland Clinic, Postural orthostatic tachycardia syndrome (POTS) is a condition that affects circulation (blood flow). POTS is a form of orthostatic intolerance, the development of symptoms that come on when standing up from a reclining position, and that may be relieved by sitting or lying back down. The primary symptom of an orthostatic intolerance is lightheadedness, fainting, and an uncomfortable, rapid increase in heartbeat.
This also causes heat/cold intolerance, severe fatigue, pain, sweating like mad, digestive issues and many more. POTS would explain all my symptoms. I was hopeful that this will be the answer I have been looking for for many years. But yet cautious because I did not want to be let down again. I had a full day of testing. QSARTTilt Table,  ECGEcho and
Cardiovagal ANS. I was so exhausted by the time for the tilt table test that I could hardly stay awake.




And just what I predicted, the results for the Echo and Tilt Table are negative for POTS. On one hand, that's great that I have a healthy heart. It truly is. But, on the other hand, I am so sick and tired of doing this dance. Dance of having a false sense of getting closer to what is actually wrong with me, getting my hopes up, then be utterly disappointed and back to square one. It's torturous. Causes such depression and even self loathing. Seriously, I hate myself when I get negative or normal results. It makes me think "Maybe they are right. It is all in my head and there's nothing wrong". I feel useless, stupid and broken. I can't work. I can't thoroughly clean my house. I can't drive. I've missed functions that are outside because of the heat. I've missed functions because the pain and fatigue is too bad. And on the bad days, I can't get out of bed or need help walking 15 feet to the bathroom. 




So why do I keep agreeing to these tests knowing NOTHING will ever tell me exactly what is wrong with me? Ok yeah, some day maybe something will show. Ya know, AFTER I've had a disease associated stoke or heart attack. Or hey, maybe when I'm dead they will figure it out. Ok, Ok. I know I'm being a bit dramatic there but really, this is the angry thoughts that go through my head every time I hear nothing is found. I get pissed off. I yell, cuss and scream. I sob. I ugly cry. It's not pretty folks. I wanna say f**k it all. I'm never going to another doctor. I am never doing another test. I don't care if my arm is falling off. NO MORE TESTS!!



Ok, I'm done feeling sorry for myself. I do feel better getting that out. Oh and sobbing like a fool earlier. That helps. As did the bag of Unwrapped Starburst Minis. But that's neither here or there. I think I go through this pain and disappointment every time because I carry a glimmer of hope that my actual diagnosis will be found. I want vindication that there is truly something wrong with me. I want to know if I'm going to progress so I can plan things. I want to give Hubby and the kids a peace of mind that mom is not going to keel over tomorrow or become a huge burden in 10 years. You would think that after 10+ years of searching for a diagnosis that I would be used to the idea of a normal test result and that the mystery will not be solved. To know what the future brings. Look, I do not want MS, Systemic Lupus or some horrible incurable disease. No one wants that. I just want an answer. I deserve at least that much. 

Hugs!!
Jenn

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Thursday, June 27, 2019

Must Read Before You Buy Ohio Medical Marijuana...

As you may know, from my other posts, I was finally able to obtain a medical marijuana (MM) card and visit a dispensary. What you don't know is all the limitations that were set by the state of Ohio regarding usage and forms. Check this out...


"I'll just buy "plant material" (Bud) and make my own edibles with it."
  • No, you cannot. It is illegal. Per Ohio Administrative Code (OAC) 3796:7-2-05 (B) patients and caregivers shall not engage in the cultivation of medical marijuana or the manufacture of medical marijuana extract, unless authorized pursuant to rule blah blah blah and so on. The important part is what I have made bold and underlined. What this is saying is that you are not legally allowed to make edibles. Because when you make edibles the first thing you do is "decarboxylize" the plant material. This converts the THCA and CBDA to THC and CBD. (Click the link for more information on decarboxylation) In essence, you are "manufacturing medical marijuana extract". Of course this applies to all available forms of MM.
I bet those are some damn good brownies!

"I can roll up a joint or use my bowl/pipe to smoke it."
  • No, you cannot. It is illegal. Per OAC 3796:8-2 (B) (1) (2) The smoking or combustion of MM is prohibited. Meaning, you can not burn the plant material and smoke it. The word "Combustion" is really important. 
Tom and Jerry will have to go back trying to kill each other.

"I can buy any device that is a "vape" to vaporize my MM."
  • Sorry. Again, this is a no. You have to be very careful which device you purchase. You have to avoid "vapes" that cause conduction. (Conduction is basically burning the plant material with coils or open flame) OAC 3796:8-2 (B)(1)(2) talks specifically about this. Beware! Just because it is called a "vape" doesn't mean it's a legal one. For instance...
  • This one is called Ooze Drought Dry Herb Vaporizer. This one is LEGAL to use. 
Ooze Drought Dry Herb Vaporizer



  • This one is called Ooze Duplex. This one is ILLEGAL to use with plant material. However, you are legally allowed to use this one with vape oil and wax.



Ooze Duplex


  • Here is the difference...
  • The one on the left heats (convection) up the plant material. Kinda like a crock pot. The one on the right heats (conduction) up the plant material too but it burns the plant material. That's a big no no! (Click this link here for more information regarding conduction vs convection vapes.) 
  • The easiest way to determine that you are buying the correct vape, simply look at the red arrow above. See how it looks like little coils and the one on the left is has no coil looking thingies (technical term) but a well with holes? That's how you determine it. 
  • I also look at if the temperature settings can be changed. Any where from 250℉ to 420℉. (Temp setting could go higher but I thought 420℉ was appropriate.)
  • Some websites will even have combustion or convection in the product description.
"Many different types of edibles are available right now for me to buy."
  • "Many" no. Two.Gummies and Tincture. State of Ohio and their infinite wisdom do not want any edibles that have to be refrigerated. So, no butter, cookies or brownies.
  • Price of gummies at the time of this post and in my area of Ohio is $80 for 11. HOLY CRAP! That's expensive!!
  • Tincture is available but it too is rather pricey and apparently does not taste all that great. 30ml bottle is $80 (that is a 2 day supply) To put the quantity in perspective, 2 tablespoons is 30ml.

"I can have my MM on me/vape  it at the Social Security Office for my SSI."
  • No, you cannot. This is illegal. Per Ohio OAC 3796:7-2-05 (H) and (I) medical marijuana shall not be possessed or administered on federal property or in federal buildings. Medical marijuana shall not be possessed or administered at any public or private place where medical marijuana is prohibited. Watch out for those signs!
Few other things that you need to know:
  • Be sure not to drive your tractless trolley when under the influence. Seriously, it does specify the tractless trolley. OAC 3796:7-2-05 (J)
  • Keep your card with your MM at all times when out and about. 
  • Please keep your MM out of reach of children and pets. Including teenagers! Best thing to do is buy a lock box or small gun safe to keep it in. 
  • You can be fired from your job if you using MM. Since marijuana is still illegal federally, you are not protected.
Oh, that reminds me of one more thing:

"I have my Carry and Conceal Gun License and my MM Card."
I know, I know...

I was surprised to learn about these laws and of course I am quite disappointed on some of them. But laws are always changing. Besides, what you do in your own home is your business. 😉

Hugs!!
Jenn

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Also, I am in no way being compensated for the Ooze products that I have shown above or any of the links that I have posted. I used the Ooze Drought because my cousin, who also blogs, has the Ooze Drought. I wish I was compensated!😉

Friday, June 7, 2019

So, I found a lump in my breast...

You read that right, I found a lump in my left breast. With everything else I have going, this is the last thing that I need. But it has always been said...  
       

He must! What other possible answer could it be? Fighting for 10 years wondering what truly is wrong with me, losing my ability to work and drive. Hell, why not throw in a lump in my breast for shits and giggles?!

But first... 

*placing soap box

Ladies, we need be performing self breast exams at the very least once a month. Get to know the feel of your breasts. It's very important. Medical professionals are now saying that young women do not need to do this. Per American Cancer Society... Evidence does not show that regular breast self-exams help reduce deaths from breast cancer. However, it is very important for women to be aware of how their breasts normally look and feel and to report any changes to a health care provider right away. This is especially important if a woman notices a breast change at some point in between her regular mammograms. So, let me get this straight. You no longer need to perform a self breast exam but you need to know the "look and feel"??  Kinda like in Alabama, you can have an abortion as long as you DO NOT know you're pregnant. (I am not even going to go there) How the hell are you going to know if you have a lump if you're not doing exams? As a nurse and a woman, I call bullshit! Do the breast exam. No need to be embarrassed or afraid. Millions of women do it every day. Perform it privately like when no one is home or when in the shower. It's ok. It could save your life! If you don't know or unsure you are doing it correctly, take a look at this site.

This is my journey...

Tuesday May 14th:
          
  • I started to feel this burning pain in my left breast. I thought it might be just irritated skin from the beagles playing on me. The burning intensified throughout the day. I decided to do a self breast exam. I felt this dime sized lump in my left breast just under the areola. I wasn't really sure if that was what I was feeling. Fortunately, hubby was home so I asked him to feel. He did and then said "Call the doctor.". That day I was able to get in. The Nurse Practitioner (NP) asked me why at 43 I have yet to get a mammogram. My reply was, "There's no family history, I do self exams and I thought I had to get a mammogram when I was at least 45 or 50.". Apparently this doesn't matter anymore. You can have no family history, self exams are helpful and women need to start getting mammograms starting at 40 and then every year thereafter. Oops! My bad! The NP performed a breast exam on me with a worried expression. She said she was concerned and I needed to have a mammogram and ultrasound. The imaging facility will call me to schedule. I can see the worry on my hubby's face. I said "Honey, don't worry. I am ok. It is probably just a cyst or collection of fibrous tissue that the beagles irritated. It will be ok.". At that point I'm not sure if I was trying to comfort him or feed my amazing sense of denial. 2 birds with 1 stone I suppose.
  • I go home and 15 minutes later I actually received a call from the imaging facility. I was impressed. Then I wasn't "We don't have any appointments until May 29th." WTF!?!? You can't get me in for more than 2 weeks? The lady told me I could call around to see if I can get in sooner. I called a hospital near us. They were scheduling in July! Finally after several calls I found on that could get me in on the 21st. I'll take it.
Now hold up...all the tv, internet, radio, etc... on the importance of early detection of breast cancer but with a lump I can't get a mammogram for more than 2 weeks to a month?? WTF! I am so angered by that! You expect me to sit here for a month, my hubby sit here for a month not knowing what is in my breast, thinking the worst because that's what we all do BECAUSE of the tv, internet, radio and etc... and you can't squeeze a person in? I just don't get it! If a man needed... I know I don't need to finish this sentence.


May 15th to the 21st
  • Wore brave face, act like there's nothing wrong, minimized the seriousness of the situation, cracked jokes about if I were to have breast cancer and had a mastectomy then I could get new perky ones. Joked about the terrible South Park episode about breast cancer and at times simply try not to think about it. Oh and I realized for once in my life that I was using food for comfort. I absolutely need carbs!!!
  • One thing did surprise me. I did not want anyone to know. Not my mom, best friend, my kids, in-laws. Not one person other than hubby. I didn't want them to worry needlessly if it turned out to be nothing. I know how they all worry. My daughter would be a mess because she takes everything to heart. My bestie has a chronic illness of her own and stress and anxiety makes it worse. My mom, I know how she worries because I am my mother's daughter. I am adamant I do not want anyone to know. However, I did tell Hubby if he needed to he could tell his bestie because I know it wouldn't get back to my family and friends. I know how Hubby is. Sometimes he needs to talk it out with someone. And that's ok. I get it. 
  • I did end up telling my bestie. I know if I were her, I would be pissed if she didn't tell me. She has been great. She took it well. From appearances anyways. Because I know she worries just like me. Her and Hubby then talked me into telling my mom. I did but I not until after my mammogram and ultrasound. She wasn't mad but it kills me that I made her worry. Ultimately, I did feel better telling them but felt incredibly guilty to put them through all that worry. 
May 21st The Mammogram and Ultrasound
  • The technician was a wonderful, comforting lady. As I stood there in my lovely robe, she prepared the machine and chatted about the recent recommendations for not teaching young women about self breast exams. She and I were totally on the same page. It needs to be taught. Nevertheless, it was time for my mammogram. You have to stand in front of this contraption as the technician places your breast on this plastic clamp-like device. You then have to contort yourself by keeping your "hips straight to make the nipple straight", straighten out your right and left arms and touch the back of the machine like you are hugging it but have your arms relaxed. Move right shoulder in and still keeping your hips straight and then bend your right knee. At this point I said to the technician that "A man invented this!". She laughed. Probably not the first time she heard this. She then began to press down the plastic parts to squeeze my breast and make sure everything was perfect. Time to hold my breath and take the pics. Honestly, it wasn't that bad. Just awkward trying to balance everything. Especially when you have balance issues. When it was over, the technician showed me the images. It was really neat. Of course I forgot to take a pic to share so here is one I found on Google...
  • Ultrasound was a breeze. No pain. You just lay there while another technician places warm jelly on your breast and moves the ultrasound thingy (technical term) across to take pictures. And of course I didn't get a pic of that one either. I know, I'm slacking! 
  • Afterwards, I had to wait for the radiologist to come in and discuss what she sees. Using my great skills of denial, I told myself that it will come back as a cyst or simple fibrous tissue. NOPE! She came back and said she recommends a biopsy because it looks suspicious. Fan-frickin-tastic! 
May 24th -- The Biopsy
  • Nerves are on edge but still holding it together. First I had an ultrasound to see exactly where the lump is located. Tech marked my breast with an X for the Radiologist. The tech spoke in a sweet, compassionate voice when she explained what was about to happen. It made me feel at ease. The radiologist arrives and I must say she also had a very sweet and compassionate voice. It was truly evident that they both really care about their job and their patients. Radiologist numbed the area. Oh get this, I didn't have the normal bee sting like feeling like I do at the dentist or with stitches. Just pressure. I actually thought something was wrong. So I spoke up. (Imagine that) Apparently there is a "buffer" that docs can add to the lidocaine (Novacaine) injection that removes the sting. The radiologist stated "I've been doing this a long time and I know a few tricks.". Yay for me! The radiologist informed me that I will be hearing a loud click and she will tell me before she does it so it doesn't startle me. Here is a pic of the "needle" she used...
 
  • I chose this pic because 1. It's funny to me (I'll stab a bitch) 2. It's exactly what it looks like. Kinda scary but really it wasn't. Radiologist and tech prep my left breast and I had to lay flat and place my left arm behind my head. I think this was the hardest part. I hate laying on my back because of pain. I hate having my arm raised behind my head because of pain. Radiologist took 5 pieces of the suspected tissue with the assistance of ultrasound. There was some bleeding but it was minimal. After about 10 minutes the procedure was complete and steri-strips placed. Now I had to have 2 mammogram pics done because when a biopsy is done, they place a tiny titanium marker on the lump. This signifies that the lump has been biopsied. It will show up on an x-ray, mammogram or ultrasound. It will NOT set off a metal detector. The mammogram was quick and not as much pressure placed like during a normal one. Just checking to see if the titanium is in the correct spot. Now it's time to sit and wait until the 29th for results. Of course this was done on a Friday of a holiday weekend. I know how to pick my appointment dates!
May 25-29th
  • Sore, swollen and bruised. Wear your bra the first day. I hate wearing bras but it does help with the swelling. Ice packs are important for the first day. Best choice is a bag of frozen peas. Frozen green beans work just as well. At bedtime I like to lay on my left side. So I placed my clay cold pack on the bed and had my breast laying on top of it. 
  • Second day, the swelling has gone down, bruising increased and it's sore. But nothing out of the ordinary. The hardest part for me was trying to keep the beagles from running across my chest as they like to do. They have no concept of boundaries. 
   
Of course I had to add a pic of  Ms Bella

  •  All the other days, not much to report. Still sore, bruised and beagles are making it challenging.  
May 29th -- The Results
  •  Not in yet

May 30th — The Results
  • Still nothing and I’m frustrated! I get that I had the biopsy on a Friday. I get that it is a holiday weekend and more than likely the pathology lab will be closed the following Monday. I get that Ohio had 14 confirmed tornadoes (no joke, we did) and most places don’t have power but COME ON! Ok, after reading what I just typed does I sound a bit selfish but I’m just scared. Scared of the unknown. Hubby hasn’t been sleeping. Bestie is worried. Mom has been quiet. And of course I feel guilty for making them worry too. 
  • Decided this was BS so I called the breast center to inquire about my results. The lady said she faxed the results right now AND the report has been ready for DAYS!! Seriously "ready for days? UGGGG!! 
  • Few hours later...
  • So, spoke with my doc and I do NOT have breast cancer!!!! I have a Fibroadenoma. A common benign tumor that is common for women. Click on the link for more information. 
So what now?
  • I had already decided if it were to come back as benign, I would have the lump removed. I don't want to feel a lump in my breast, I don't want to worry if it is changing into something (which more than likely it wouldn't) and more importantly it causes tenderness and burning pain. I already have enough pain going on and if I can't alleviate some, I'm all for it. It's a simple outpatient procedure. 
  • I also had already decided if it were to come back as cancer, I would have a mastectomy. I had no hesitation about it. Take them. I can get new ones. Most insurances will cover reconstruction after mastectomy. I could have new perky ones!
Little info...
All the worry, all the what-ifs, all the sleepless nights and all the devoured carbs in the past 2 weeks was for a benign tumor. That's cool, I'm good with it! It's important that all lumps to be checked out. Scary? Hell yes! But, I made it through and positively know that I do not have breast cancer. You will make it through it too.

Hugs!!
Jenn

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Wednesday, February 20, 2019

Influenza A...how I loathe thee!

According to webmd, “Influenza, commonly known as the “flu”, is an extremely contagious respiratory illness caused by influenza A or B viruses.”. “The flu virus attacks the body by spreading through the upper and/or lower respiratory tract.” How true that is! Very, very contagious. Hubby had it and the very next morning, I had symptoms. And naturally, I told him I blamed him and I didn’t like him anymore! We both tested positive for Influenza A.

Symptoms are:

  1. Coughing 
  2. Sneezing
  3. Sore Throat
  4. Headache
  5. Muscle Aches
  6. Fatigue
  7. Fever and chills
Sounds kinda basic doesn't it? Well, let me tell you there is nothing basic about the symptoms listed above! The cough, OMG! The cough was so congested, painful and felt like my lungs were on fire. Thick, nasty, yellow mucus that would fight you from bringing it up. At one point, I was choking and had to have hubby pound on my back. I had small broken blood vessels in my eyes, on my face and in my scalp. In turn felt like a million little brusies. When I would cough, the burning pain throughout my chest and almost electric shock like. I hated to cough and tried to avoid it as best I could but that was a losing battle. On top of it all, it left me very short of breath with very minimal exertion. Like, getting up and walking to the bathroom like I smoked 10 packs a day. I had to sleep in my recliner for a few nights because I couldn't lay down. And of course, I couldn't sleep alone in my recliner without the beagles. 
My throat was so raw. I would have swore I just drank acid. That burning felt like it was connected to my lungs. I could not get enough cold drinks, ice cream or ice. Ice cream I didn't mind so much.


Fatigue, muscle aches and headache was more exaggerated than what I normally have. That just felt like a flair. The fever and chills on the other hand, I knew I was sick when I was under 3 blankets with sweatshirt, long pants and socks. I am ALWAYS hot! Then once the ibuprofen kicked in I was sweating like mad. 


Here it is 2 weeks after the fact and the pain in my throat and lungs are gone. My endurance is better, not 100%, but getting there. The cough is flemy but nothing like it was before. I can see how people can die from the flu. The pain, choking, it developing into pneumonia, how easy you could become dehydrated and malnurished. I'm pretty sure having Fibro really made the symptoms worse. Cuz, why wouldn't it. Fibro is spiteful that way!

You may be wondering why I didn't get a flu shot. Well, I was advised from my doctor that since we don't know exactly what autoimmune/demylenating disease I have that the flu shot can make things worse. So lucky me! However, if you are able to get the flu shot, GET IT! GET IT NOW! Insurance pays for them and some pharmacy has them for a reasonable cost. 

Hugs!!
Jenn

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Monday, December 3, 2018

Medical marijuana patient registry in Ohio is up!

Today, Ohio State Board of Pharmacy activated the patient and caregiver registry for medical marijuana! I am so happy that this day has finally come.  If you have already been seen by a certified physician and have been approved  Contact that provider’s office and asked them if they have registered you. Now you might wanna give them  a few days considering the registry has literally just opened.  I am sure they have many patients  to enter into the database so it’s gonna take some time.   Ohio Marijuana Card, the place that I went for my recommendation, they told me that I should receive an email once I am in the database from the Ohio State Board of Pharmacy.  And you know I’ll be in my email box constantly for the next week!
This link will send you to Ohio’s webpage for medical marijuana. This gives you all kinds of information and rules that you will need to know once you are a card  this link will send you to Ohio’s webpage for medical marijuana. This gives you all kinds of information and rules that you will need to know once you are a card holder.
Just a reminder the cost of a patient medical marijuana card is $50 for the year. The cost for the caregiver card, which I think is a terrific idea, is $25 for a year. 
 I will keep you posted when I receive my card and definitely my first trip to the dispensary. 

Hugs!!
Jenn

P.S. If the format of this post is crazy, I apologize. It’s late, I’m in bed and on my iPad. I was not about getting up for my laptop. Also, I hate not adding any memes or pics so here’s pup!

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Thursday, November 29, 2018

Check out Jenni's Guts

*Again, I am in no way, shape or form getting paid for or any kind of merch for promoting this blog. This is my cousin Jenni's blog. I just thought the more information I share with you, the better we all will be. Even though you may not have Crohn's, her life is just like ours, neverending crap (no pun intended) that makes you feel miserable and think you are crazy.


If you or someone you know has Crohn's Disease along with Fibro, check out this terrific blog, Jenni's Guts. Like I said above, you may not have Crohn's Disease but you can totally relate to her struggles. Her posts are down to earth and to the point. She, like me, does not sugar coat when she writes. Check her out! Oh yeah, she was also nominated for...
Click the links highlighted to check it out!

Hugs!!
Jenn

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