Update on Stem Cells

My first post on this page was about the stem cells I got for my MS. It’s a very expensive process and a personal choice because as of right now it still is not approved in the US so insurance does not cover it.

Ideally you have this procedure, you see improvement and you don’t have to do it again. Looking back I realize that the stem cells probably gave me a boost in energy during the first few months in addition to the other pleasant changes.

15 months later though I am seeing decline in the changes I originally saw. Whether this is due to my MS re-damaging the areas or what I am not sure. I am not a scientist, though I do love my research.

Originally, before my stem cells I hadn’t been able to feel my feet for nearly three years and then less than a week after the stem cells my feet magically reappeared, at least that’s how it felt. I also had moderate back pain in my spine since 1999 or 1998, honestly it was 20 years ago so I am not sure anymore, that was gone as well.

I thought this back pain was from the first car accident I was in but now that the pain is coming back after being gone for almost a year I am wondering if it is actually from the lesion on my spinal cord in the same area. I know I have an old lesion there because they told me that’s probably the reason I had severe MS “hugs” for several months in 2011.

That’s the kicker, so much money spent, so much hope put in because the pain was gone for the first time in 20 years and now, after a little more than a year it’s coming back. The feeling in my feet is slowly going away too. There is still enough there at the moment that I can sense them, but enough lost that I know what’s coming.

Would I do it all over again knowing? Probably, if I had to do it all over, it was a nice break from pain while I had it. Though I feel terrible that support I received to pay for the procedure ended up not being long term.

Multiple Sclerosis and Germ Season

One of the worst things about MS treatment is the fact that it has to shut down your immune system to keep your body from attacking the brain.

Due to treatments I have had an uncountable amount of colds that turned to sinus infections since 2014. I had sinus surgery in 2016, hoping that fixing my double deviated septum and small sinus pathways would reduce the frequency of sinus infections from the inflammation caused by colds. It did not, it did however make it so that I was unaware when I had a sinus infection until very far in because my face didn’t start to throb as soon as it had before as a result of all the extra space I had made.

Recently I got sick suddenly and after 3 days of high fever I finally decided to go to the doctor. By the day I went in my fever was up to 102.3 and I was seeing things. Looking back I probably should have went to the ER but I HATE the ER. I spend enough time there already and I was afraid if I went to the ER they would admit me.

Even after taking Tylenol I still had a fever when I arrived at the doctor. They did a Flu test, thinking that was a logical assumption with my comprised immune system and my symptoms. Though I do get the flu shot every year since 2006. 12 minutes later, it was not the flu. It was determined I had “communal pneumonia”.

Even after taking 2 types of antibiotics 3 times a day for 10 days I still felt terrible. My lungs no longer felt like sandpaper when I coughed but my fatigue was worse, the cough and congestion still there. Pain breathing anytime I exerted any type of effort.

Three weeks later and I am still recovering. That is the price of treating MS, everything takes longer to heal. It’s not something you can avoid when you have kids either, they have to go to school and they are constantly around other kids who may or may not be sick. They come home and you cannot decontaminate them fast enough or well enough to catch every possible thing.

So during winter I dread every sniffle and cough, is this allergies or has my child been given some terrible germ that will eventually wreak havoc on my already terrible immune system.

Hang in there, but if you have any good tips please let me know because I am so tired of getting sick!

FAQ About Service Dogs

Service dogs are smart and they are used for many things now, PTSD, Mobility issues, Autism, Diabetes, and Seizures. I cannot speak for everyone with a service dog, but here are some of the most frequently asked questions I get about my service dog.

Q. Can I pet your dog? (ALWAYS ask for permission. Regardless if you think the dog is being trained or not you need to ask for permission. Distracting a service dog from its job is actually a misdemeanor offense.)

A. Always ask, if you ask me I am much more likely to give permission than not. It really depends on the day, how bad my symptoms are and what I am doing. Do not get offended or mean to people who tell you no. Each service dog has different tasks and their owner may not be able to put their dog in a situation to be distracted for one second.

IMPORTANT NOTE: Also, do not approach people with service dogs in places you would not approach people without a service dog. I have had people stand next to me and talkĀ  while I am trying to make a transaction at an ATM and while trying to give prescriptions to a pharmacist. Do not put your hand out to have a service dog interact with you, this is a distraction and you are encouraging them to misbehave. Do not just pet a service dog in public without asking, regardless if you think you are seen or not. I have had girls follow me around the grocery store petting him every time I go to take something off the shelf. It’s not only annoying, but it’s disrespectful.

Q. Are you training him?

A. No, he is my service dog. (Please don’t ask people who don’t look disabled if they are training the service dog that they are with. Personally, I feel bad enough about myself for needing a service dog at such a young age, your question that seems innocent just reinforces those feelings.)

Q. Are you a Veteran?

A. No, I was not, as frequently as this question and the one above are asked it makes me feel as though I need to justify my disability. I don’t though, and I don’t really feel like telling strangers how damaged my body is everyday so please be mindful.

Q. Does he ever get to be a dog or is he always working?

A. This question is easy, he works when his vest is on. When he’s not wearing his vest and we are at home he gets to be a dog, play with our other dog and the kids. He does still help me around the house without his vest on because he enjoys working. When we are out, he doesn’t have to wear his vest at the pet store, dog park or vet and he LOVES going to these places. People can pet him, he can sniff dogs and just be a dog.

Q. What does he do? (Legally, unless you are the owner of a business, we don’t have to answer this question. I usually do unless I am having a hard day or the question comes off a rude rather than interest because I don’t always feel like talking about the medical reasons I require a service dog.)

A. My service dog is for Brace and Balance. This means he has been trained to keep me walking up right and watches to make sure I do not fall down. He can also help me get up if I am on the ground, usually from sitting on the floor with my kids. He is trained to do so much more than this though. He helps me take the clothes to the laundry room, he picks things up off of the floor when I accidentally drop them. He can open doors and the fridge, he can bring me things, he is trained to find someone if I fall at work and need help. He also centers me when my anxiety and PTSD are impacting what’s happening around me. He wasn’t trained for this task but because of our bond he started doing it on his own.

Q. Can he go on a plane and does he get his own seat?

A. Yes he can go on a plane, ADA laws in the United States require that he is allowed everywhere I go unless it’s a surgical room. No, he does not get his own seat, he actually curls up into a ball on the floor in front of me. He does not like flying though so if there isn’t a bag under the seat in front of us he usually tries to fit under it.

* I have had numerous people tell me that they were thinking about getting a vest for their dog so they came bring them places since they are calming. Therapy dogs are not protected by ADA laws like service dogs are. Service dogs must meet certain standards to have that legal privilege. People who bring misbehaving dogs into places with a vest or claiming they are a service dog actually makes it more difficult for those of us with actual service dogs. Please do not do this. Whenever I hear about this I hand out ADA law cards to the businesses because they need to know their rights as much as I do mine.