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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My trip to the medical marijuana recommendation physician...

First of all...

*I am in no way, shape or form being paid for, benefiting from or getting anything out of this post by Ohio Marijuana Card . I am writing this to share my experience with you. They will probably not even be aware that I am writing this.

This pic is from Ohio Marijuana Card website. Click here to visit site.

Quick background, in 2016 Ohio House Bill 523 was signed into law pertaining to the legalization of medical marijuana. And, us Ohioians, have painstakingly been waiting ever since. Ohio has been very slow implementing the program and even though HB523 timeline indicated that medical marijuana will be available September 2018, that did not happen. Go figure!

Here it is November 2018 and there is finally, light at the end of the tunnel. We should be able to purchase products by mid December or early January. Even though, Ohio Board of Pharmacy Portal for the card is not up yet, certified providers can now start to evaluate and forward their recommendation to the state. So beginning of this month I went to Ohio Marijuana Card to be evaluated.

I honestly can’t remember how I found Ohio Marijuana Card. More than likely it was a Google search for certified providers. Anywhoo, making an appointment was easy. Just go onto their website, fill out their form and pick the date you want. (I do know at this point they are booking a month out. So be patient. You can't even buy products until end of December 2018 or early January 2019)

Few things you should know:

1. You have to have at least 1 of the 21 Qualifying Conditions (click the link to see what conditions are approved at the time of this post.)
2. Take pertinent medical records with you. I have Fibromyalgia. So, I logged on to an online medical chart my physicians use and printed out visit summaries with the diagnosis listed as present conditions. I went as far back as 2012. I printed out MRI and CT Scans too. They show the problems with my cervical disc that have bone spurs too. That suggests that I have chronic and severe pain. But it was the diagnosis of Fibromyalgia that was really important. I also printed off my ridiculously long medication list. Obviously it shows pain meds, muscle relaxers, antidepression meds ya know all the crap you have to take when you have Fibro. 
3. Take your ID and form of payment is either cash or credit/debit card. No checks or bitcoin.
4. The fee. Their fee is $280. This covers the evaluation, if approved, recommendation to the state, the submittal of paperwork to the state and the 3 follow ups that you have to have for the year in accordance to the law. I believe once the Ohio State Board of Pharmacy Portal opens, Ohio Marijuana Card will take the $50 marijuana card fee for the year and send it to the state (and $25 for you caregiver’s card). So you won’t have to wait like I have to right now because it’s not up yet. The total then would be $330-$355.
5. NO INSURANCE WILL PAY FOR THIS EVALUATION OR FOR MARIJUANA PRODUCTS. This is all out of your pocket. 
6. Paying the above fee to Ohio Marijuana Card does NOT guarantee you will be recommended.

Ok now with all that being said, let me tell you about my visit. My appointment was at the Beavercreek location. Take note that there is NOT a sign posted by the road. However, there is a paper taped to the door. It took us a few minutes to find the office location. I thought about it and came to the conclusion that they might not want a big sign that says Ohio Marijuana Card because the fear would be some moron will think they have buckets of pot just laying around and try to rob the place. So I don’t blame them at all for not posting a “Come rob me sign”. There are 2 entrances. The front one, next to the barber shop. I made the mistake going in this way because there is a flight of stairs you have to walk down and I loathe stairs. My legs loathe stairs. But if you drive around back, you can walk right in, no stairs and there’s even a wheelchair ramp.

I never claimed to be a pro photographer!

The waiting room was very clean and quiet. With the exception of a pod cast playing which didn’t bother me one bit. It was not filled with drug crazed lunatics like some government officials think it would be. Just people like me, in pain and so badly want it to stop.

The gentleman at the front desk was very polite, took my ID, medical records and answered any questions that I had. My appointment was at 11 am and we were seen at 11:30. Again, this was not a big deal considering I’ve waited at my pain clinic for 2, 3 sometimes 4 hours at a time.

This pic is from WHIO News interview. Watch it... here.

The doc called my name so my hubby and I proceeded to the exam room. Exam room was comfortable and clean. Typical looking exam room. I sat on the couch next to the doctor as we began to talk about my health conditions and fibro. He reviewed my records and test results. The doc and I did talk about different forms available and what he thought would be best for my symptoms.

But guys, seriously, I am not going to go into detail about what he specifically asked me and what my answers were. I do NOT want people who fake Fibro just to get weed to learn from my post on what to say and not to say. Sorry posers, not gonna happen! You’ve already made it impossible for people like me, who are actually sick, to get disability because of you faking it and getting busted! But I will say I felt it was a very thorough and extensive evaluation. In the end, I was given the recommendation for medical marijuana. They will submit the paperwork and I will receive an email once the portal is up and running to obtain my card and of course pay the state their money.

Oh, I almost forgot, I asked the doc what made him become certified. He said (I’m paraphrasing mind you.) that he went to a conference and the study regarding other states who have legalized medical marijuana had 25% less opiate use. So he knew there was something to it. And, if opiates do not have to be prescribed, considering the epidemic right now, that would be a plus. (Again I am paraphrasing.)

All in all I did have a very good experience. I do recommend going there to obtain a recommedation for medical marijuana. Honestly, I was afraid that with medical marijuana recommendation places popping up (just like some pain clinics) that it could be real sketchy. But this place wasn’t like that at all. I was impressed of the cleanliness, ease to make an appointment and the thorough exam.

Keep an eye out either here or on my Facebook page for updates on the release of Ohio Board of Pharmacy Portal and my first trip to buy medical marijuana.

Hugs!

Jenn

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Unexpected reaction to my dog because of pain...

Update: On December 18, 2018, sadly Sophie let us know it was time to let her go. Her belly became distended, ulcers began to form on her hind end and she was in pain. We took her to the vet to have the symptoms checked out. However, Sophie laid down on the floor, which she never does, signaling to us that it was time. She went quietly with us there telling her we loved her, thanked her for protecting us and being such a great dog. She will be greatly missed. Love you Soph.

This is my dear sweet Sophie.

Here’s a little background. She is part shepherd and only God who knows what. She is at least 11 years old. We’ve had her for 10. She came into our life when our neighbor adopted one of her 9 puppies. At that time I was working crazy hours and did not have time for a puppy. They mentioned that the mom was still available. So Hubby and I went “just to look”. (BTW going “just to look” NEVER applies when it comes to puppies and dogs. You always bring something home) Her previous owner dumped her and her 9 puppies off at the humane society. We were instantly drawn to her. So, of course we brought her home on a very snowy day in January.

Once we got her home, we did notice she was skittish. Her reactions to the slightest bang or raise in voice let us know that she may have been abused. But that was no longer going to happen in our home and it took a long time for her to trust new people. 

Move forward 10 years later, we noticed within a few hours that her stomach became very bloated, had trouble standing up and short of breath. It was time for lunch and she sniffed her bowl then laid down. Girlfriend has NEVER missed a meal! Two of her fav times of the day is lunch and dinner! We moved the bowl next to her and she began eating a few pieces laying down but would get more short of breath. We figured with her age (11 is very old for a shepherd) that it was possibly time to let her go. 

Made a vet appointment that day and took her in.Vet was not sure what was going on. Thought maybe her liver was enlarged. Her belly was “tapped” to see if there was fluid present to swell her stomach. There was none which was a surprise to us. They decided to keep her all night to run blood work, x rays and to keep her comfortable with pain medications. We cried, prayed and cried some more.  We thought for sure that her liver was failing just like the shepherd we had before. Next morning, vet called us and said all her lab work is perfect. Major organs were functioning great but truly don't know what is going on. Vet said is was some kind of pain response. She was prescribed Gabapentin twice a day. My mind kept telling me over and over that I do NOT want her to suffer. I do NOT want her in pain. It was almost an obsessive thought. Well, not "almost" it was and still is. I know when we went to get her and I mentioned it at least twice. The vet had to think that I just wanted to put her down. But that is the complete opposite, IF she wasn't suffering. I told hubby what kept playing in my mind. He said “Jenn, it makes sense. You are in pain every single day, every minute of the day. You know how miserable it can be and you don’t want that for Sophie.”. He was totally right! Why didn't I realize that? Is it because having chronic pain alters your own perspective? Is it because having chronic pain is my normal? I don't know but I am lucky to have hubby give me some insight.

As for my Sophie, she is hanging in there. She eats and drinks just fine. Still wagging her tail and will bring you a stuffed animal. Little night incontinence mostly because she is now afraid to go outside to potty at night. She takes her Gabapentin, also has an anti-inflammatory for the bad days. She will tell me when it's time. 

Hugs!

Jenn

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UTI and Autonomic Dysfunction

Auto...what?!? Autonomic Dysfunction (AD) or Dysautonomia is a condition in which your involuntary nervous system overreacts to bodily stimuli. In other words, the things in your body that you cannot control (ie...blood pressure, heart rate, breathing etc...) goes all out of wack when there is the simplest of problems. This is commonly seen in people Diabetes,  Multiple Sclerosis, ALS or Lou Gehrig's Disease, Guillian-Barre and Parkinson's. Or no diagnosis at all. Also, medications can cause this to happen too. Triggers to AD can be: stress, dehydration, bladder distention, bowel  alcohol consumption, tight clothing or simply just standing up.

It was a Sunday and I woke up actually feeling refreshed and little pain. (Should have known it was too good to be true). Hubby and I enjoyed a nice lunch out without the kids and on our way home, I felt a twinge in my belly. I thought it was IBS (Irritable Bowel Syndrome) because I had just ate and like clock work, I have to go to the bathroom. Thought nothing of it. About a hour later, I felt that twinge again. Ok, have to potty. Then all of the sudden, I couldn't see straight, my head was pounding, my heart was feeling like it was going to come out of my chest, I was breathing very hard and had this pain in my neck. Thought maybe straining while using the toilet was the problem but I wasn't straining that bad. This passed. I made it out to my chair and I sat there and thought "That was weird.".  10 minutes later, twinge in belly and holy hell all the sensations happened again!! But stronger!! Went back to the bathroom (I really don't know why I thought it was IBS at this point.), sat back down and thought "Maybe I should call 911? Am I having a heart attack?". It subsided,went back to my chair, worried, and pretty sure I should have called 911 after that one. But no, my stubborn self waited 5 minutes later after the twinge and the sensations came back for the 3rd time. My blood pressure was 194/95 and heart rate was 102. I just wanted to lay down. I couldn't keep my eyes open. My speech was slurred. Words kept escaping me. At one point I remember thinking that I felt drugged. My mouth became instantly extremely dry. Like I haven't drank anything in a week dry. I knew something was very, very wrong. In the ambulance, the paramedic tried to start an IV. I am and always have been an easy stick. Not this time. My blood vessels clamped down and he told me I was dehydrated. How the hell was I dehydrated? I drink? Hell, I just came from lunch where I ate and drank??

Once I was at the hospital, I tried to explain what was going on. Twinge became abdominal pain from the paramedic and I was desperately trying to say it was not abdominal pain in the traditional sense but my brain was not cooperating with my mouth so it took a bit to let them know that is was a twinge. I was able to eventually get out that sometimes I will have a UTI and not know it and that it causes neurological symptoms. Doc ordered tests along with testing my urine. As soon as I seen my urine, I knew it was a UTI. So, that got my nursing brain working. The twinge was my bladder having a spasm. Every time my bladder would spasm, that would send my autonomic system into hysterics. Increased my blood pressure, heart rate, made me instantly dehydrated, clamped down all my blood vessels which made it almost impossible to draw blood for tests. Of course since my brain and my mouth would not work together, all I could get out was "Autonomic problem damn it!".

I seriously thought I was having a heart attack. I didn't know what was going on. Scared the hell out of my kids and hubby. Scared the hell out of me.
Sure enough the urine analysis came back as did my white count. Positive for UTI and white count (indicates infection) was 23 (3.5-10.5 is normal). Friday before this happened I did have steroid epidural injection in my neck which helped increase that white count and fueled the infection.
I was given the antibiotic Levaquin, Pyridium (Phenazopyridine or Azo Standard) for bladder spams and Zofran for nausea.

I feel much better now. I know I had to make some changes. Decreased Pepsi aka my crack, increased water. I really hate water so I bought the flavoring drops to add to it. I'm such a kid at heart and was so excited when I seen this...

No sugar, no calories and it's actually pretty good. Quick tip, don't follow the "1 squeeze per 8 oz of water". I have a 24 oz cup that I drink from. You only need 1 squeeze!

Since I don't know when I have a UTI because I don't have the normal symptoms, I bought UTI test strips for home. Once a week for now and then I'll start every other week. Just helps me to get a jump on it. You can get these from Wal-Mart fairly cheaply. Click... here for more information on ordering test strips from Wal-Mart in the US.

Hugs!!

Jenn

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How this little guy made a big difference in my life...

Having a chronic illness that takes a lot away from you. Independence, career, driving, sense of purpose. I felt that way. I know, I know... I'm still alive and someone else has it worse off than I do but I did feel that I had no purpose anymore. Until I met Connor.

Connor McGregor to be exact. Yes, hubby named him after the UFC fighter however, I call him Monkey because he climbs furniture like a spider monkey.I had no idea how he was going to change my life when he showed up.

We received a call in March, from a friend who runs a rescue, asking if we would want a 2-3 month old beagle. She rescued him from an "alleged" abusive home. Connor was underweight, skin was terribly dry because of improper nutrition and grooming and yet he was still the sweetest puppy. I've never been a fan of owning a puppy . Don't get me wrong, I love to cuddle them, play with them and leave them to their owner. I always preferred to adopt a dog who was at least 2 years old. That was when I was working 60 hours a week, kids were young, busy, busy busy. So, I never had the time nor the patience. After hearing Connor's story, Hubby and I talked it over and decided since our other 2 dogs are 14 and 11 years old, that maybe this was a good time to get another. We are such suckers! But really, could you say no to this sweet little face?

His camo hunting hat!

We quickly noticed that when Connor was chewing on something he wasn't supposed to have, that we had to change our approach. We couldn't just jump up and yell "NO!". If we did , he would shudder down to the floor as if we were going to beat him. Broke my heart. Actually made me cry that first evening. How can someone be so mean and abuse this sweet little puppy? I will never understand.

Connor and his bff Buddy

We had to really think about correction, potty training, feeding times and get a routine down. With all this, it gave me a purpose again. I was able to teach and love him without completely exhausting myself. He has given me a great sense of accomplishment every time he sits, rolls over or gives me 5 on command. I have also started teaching him to get my cell phone off the table, pick up items that I have dropped and to get his harness out of the drawer. So we decided to make him a service dog. He goes everywhere with me.

Connor was meant to come into my life. I have never known a puppy that will stay in bed with you until noon because you don't feel well. During an exhaustive flare, he is calm, quiet and loving. I know he senses that I don't feel well. He has brought me so much joy that I didn't know that I was missing. I didn't realize the depression I was in. My family has even commented how much Connor has done for me. He gave me the sense of purpose again. This little, abused, starved for love puppy that needed me as much as I needed him.

Hugs!!
Jenn
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My Solu-Medrol Journey Day 3 and into Day 4...

Yippee! Done with the IV doses! Sweating like mad. Have the lovely steroid glow going on. My mind still seems clearer than it was before. But the pain is really kicking my butt! What happened to the pain relief? I truly think that my joints don't know what to do now since the steroids are calming the inflammation down. AND apparently there is a nerve in my lower hips/sacroiliac joint that likes to shoot down into my "bejingo" (Fans of the show Scrubs will understand).
I was a smidgen irritated when my family would speak to me. I think I held it in pretty good but OMG if one more person said one more word, I seriously thought I was going to lose it. It made my skin crawl. I held in screaming "SHUT UP and WHY ARE YOU BREATHING!". Happy to say that everyone survived and hubby worked VERY late. However I did have a nice night of sleep. Wasn't uninterrupted but it was still nice. Of course I did not wake up refreshed. Why would I even think that would happen?

I did realize today that all along I should have been taking Pepcid that my neuro prescribed to me with the taper dose. I have no idea why I forgot that I was supposed to take it during the IV therapy. Would have made a huge difference. IV dose does cause increase in stomach acid and I noticed that food tasted different to me too. Sis brought me home a yummy quesadilla with jalapenos. OMG it was delicious the first time I had it. But last night, I couldn't eat it. It was like the jalapenos were super infused, making my eyes pop out of my head. Cleared my sinuses though.
Aside from the increased anxiety, heart palpations, flushed face and lil chest pain, I just don't know about other people who take IV Solu-Medrol get a bit of increased depression. I am not sure if it is an effect of the medication or if it gives you a feeling of false hope. What I mean is, Solu-Medrol makes you think that you are feeling "normal", how it should be. Spurt of energy, lessen pain (fingers crossed), mind is clearer and you have an urge to be active. It reminds me of what I once was. Working, cleaning, taking care of family, going on vacations.  How much fun our family had together. I suppose Solu-Medrol is an evil double edge sword.

Hugs!
Jenn
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My Solu-Medrol Journey Day 2

Day 2...
Wide awake on 3 hours of sleep! Holy crap! Momma needs her sleep. The entire family needs Momma to sleep lol Comes along with the territory of taking IV Solu-Medrol.
Obviously my mind is more alert and I have noticed that my thinking is clearer.  Over the past 6 weeks I could not use my brain. Very, very simple thinking tasks were very difficult. Feels like the fog as slowly been lifted. My speech is still off at times. Wrong word chosen or slurs altogether. But whatever.

I do have more pain in my hips and knees. I think they have been inflamed for so long and now the steroids are easing them up they don't know how to react. And of course my stupid body's first defense is causing me pain. The feel of my headache is unusual for me. Just a constant ache that is just enough to make you feel miserable. Pain in both eyes, forehead and temples.
Strangely enough, I began to wonder last night if I was getting a occurrence of  Optic Neuritis. Pain was hitting that left eye. I had to stop and think... "No, can't be. Must just be the Uhthoff's"  because of lack of sleep, it was getting late and I was finally feeling sleepy.

I will say the Jolly Ranchers and seedless grapes have made a huge difference. I start eating a few grapes prior to the infusion then finish the rest during the infusion. Then suck on the Jolly Ranchers. But I will say it does NOT take the nasty taste in my mouth completely away but does make a difference. Plus I love grapes and Jolly Ranchers lol
I am feeling a bit stronger with walking. I don't have that fear that I am just going to hit the floor. Endurance is still very low which is challenging. For the first time in 6 weeks I am mentally feeling better and know that my house is a disaster. I have to fight the urge to clean. Again, the fight between my mind thinks one thing and my body just laughs and says yeah right. Good thing I have teenagers to spout orders to lol.
9 am next morning and going into day 3.
I can say I did sleep last night. Woke a few times but fought to go back to sleep and it worked. I just need sleep. I do have lower back/hip pain that is shooting into my rectum. Fun stuff. Knees are still aching. Though on a good note, the headache is almost gone. I am hoping to nap today. Wish me luck!
Hugs!!
Jenn
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