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Living With Alpha-Gal Syndrome

What is Alpha-gal syndrome (AGS), or mammalian meat allergy. It is a tick-induced allergy to galactose-α-1,3-galactose. This sugar, commonly known as alpha-gal, is found in all mammals except for humans and some primates. Products made from mammals can also contain alpha-gal. These include mammalian meat (like beef, pork, and lamb), milk and dairy products, gelatin, medications, medical products (like heparin and vaccines), personal care products (like lotion and make-up), and many other items.  Reactions, which can be life-threatening, may be immediate, as in the case of injected drugs, or delayed from 2 to 10 hours, as is typical after the consumption of  mammal meat.

Several years ago I was have a lot of gi issues, massive migraines, and overall pain in joints. I got so tired of it that I went to a ND Doctor and she had me go gluten free and dairy free. Things seemed to improve my migraines were not so extreme, Gi issues improved but Never ever settle down. This was at a time before Gluten became the new key word so to say, now a days there are so many things listed as gluten free that shopping is easy and even finding places to eat out. But back then not so much I remember leaving Walmart Super Store the first time I was told to go gluten free. I cried all the way home saying I will never be able to eat anything again. My husband is a super star he dug in and we found enough recipes to make eating enjoyable. I should also take a moment here and let you know that I have had a eating disorder for many years. I was at a place in my life where I wasn’t obsessed with food and here I was having to be obsessed with what I eat, reading lables research if I could eat something. Fast forward I have been living comfortable with being gluten free transitioning that highway with great success only a few times did I get gluten.

So recently I have start to have more gi issues and my migraines were again getting intense, I knew I was avoiding gluten so I went to my doctor and ask her about it, first she ran a blood allergy test. When it came back it said I was allergic to beef. I have a fellow female veteran who has Alph-gal so I ask the doctor to run an AG test and she replied well just don’t eat beef. I remembered a getting bite by a tick and it had a spot on the back- lone star tick. So I asked another doctor and she ran the test and it came back positive. So at first I was like well ok something new. No anger, no depression just another twist in my eating. However today I have had a real slap of reality.

On Sunday I had a strong vertigo attack, spinning like crazy laying down, setting up it was bed enough I decided to go to the ER. At the pharmacy I am red flag as Alpha-gal BECAUSE seriously there is a lot of mammal product used in pharmaceutical. I was unable to recieve any medication because it was Sunday and there was no place they could check to see if the medication the Doctor prescribed me was okay to take. I would have to wait until the next day Monday where they could check it out.

I am setting here at 7:00pm on Monday and still no medication because they still have to have the company who make the medication to call back and let them know if there are mammal products in the pills. It is important to be aware the Alpha-gal is not just avoiding beef or other hooves animal. I have done a lot of research AG have a saying Fins,feathers, and scales when it comes to save to eat.

New strain of the virus

Well now there is this new strain and I believe those in control are worried. Since the beginning of Corona hospital have asked us to wear mask, and it even doesn’t matter if it cloth or surgical just wear a mask. Today the local hospital and doctors office has come out and mandated surgical mask only no cloth, nothing with valves and no shields. So I do believe this strain now must be more than we the public understand. I am taking this seriously and will be back again using mask everywhere, washing hands or/and using hand disinfection, avoiding crowds and trying to limit my interactions with people.

My trip to Texas

Yes I have been away from my post for a while just nothing worth writing about. But finally did something new. I took a week long camping trip to Texas. But before I write about Texas I went to a Pain doctor and got two shots in my back which helped with my back pain so I was able to manage camping much better than I had before.

I left for Texas from Kansas on a Monday, it was a rough first day of driving the wind was high and it made my camper weeble wabble down the road so the best I could do was 50 miles an hour in a 75 miles an hour road. I stopped at my brothers and left my scooter there. Which helped the wiggle on the road. I then pulled into my first camp site, a KOA site which was very nice. I set up camper and ended up going to bed very early. Then next morning I got up and packed up the camper of the few items I had loose and headed out. I drove from Kansas to Texas – Wichita Falls. It was a long drive but at least the wind wasn’t so bad and I was able to kick it up to 60 miles an hour. The Texas campsite was very nice and I was there pretty early so I hung out. I watched some shows on my iphone and then went to bed. The next morning I went to Abilene State Park were I was going to attend a YouTube gathering put on by Lola “Lost on Land Again” which was the main reason for my trip.

My friend from Overland Park came to the Park also and we ended up rent a car to be able to get around the park area. I was able to me so many new people who I have been following on youtube and other as well. Below is a picture of the last day at Lolapalooza it was a great group of people and I hope to go back next year.

When I left I was able to stop for the night at a camp ground near my Son, so he and my daughter-in-law came up to see me and we were able to go out to eat and spend some time together. The next day I did a long drive and made it to Kansas again but this time I stayed at a motel. The next day I made it home.

Update my blog

I know it’s been such a long time since I posted anything. I have no excuse but things have been a bit weird, my last post was March 2021. On the 14 of April I got the final 6 teeth that I have removed plus a couple bones in my lower jaw. This meant I had to go with out any teeth for a long time. I didn’t get my lower plate until the 10th of June, luckily I was able to wear the upper denture about a week after surgery. After I got the lower denture I couldn’t wear it until I went to my own Dentist and got a soft liner placed in the Denture. So Finally I can almost eat solid food again, some things I have problems with some things. During this time Bill was finally approved for knee replacement and had surgery on the 8th of June.

Bill in the Hospital after surgery

He was in the hospital for two days and then he came home. He has been my caretaker for so long, bringing in groceries, taking the heavy trash to the street on trash day. So now he is home using a walker to get around, nurses and physical therapy come to the house. It is a fun journey to get things done but we will make it I am sure. It’s a good possibility that he will be off work until August. which seem to be a long time.

So yesterday was the celebration of the 4th of July and the city of Kansas City, Ks fireworks are legal so our neighborhood sound and feels like a war zone with all the fireworks going off. I don’t like the big loud booms like a bomb but the other type I don’t mind.

A Year in a Panedemic

In March 2020 the United States declared we were in a state of emergency over the COVID19 virus. People made mad dash runs at the grocery store, the shelfs were emptying out there was a lack of toilet paper, paper towels, disinfection supplies. We stayed in our house for 14 days and Bill’s company shut down for 6 weeks. Every one is required to wear a mask and to keep social distancing.

Now a year later sometimes it seems surreal when I go to the grocery and see everyone wearing a mask. Something I don’t think I would have ever seen before. We are still maintaining social distances wearing mask and washing/sanitizing our hands all the time. There still are shortage of some things but that is because of companies have to close for a bit so stock got low. Where my husband works they have had to lay people off because of lack of parts.

The good news is they have developed vaccines against the the COVID virus well at least three and maybe four and are currently vaccinating people as fast as they can. I was able to get my first on February 10 and second in March 10 and so was Bill. The first one we both just had a little pain on injection site and a little tired but the second one I ended up with a large knot on my shoulder at the injection site it was very red and hot for a while. Bill didn’t have any reaction at all. So I feel a bit better about going places and soon I may in fact go eat at a restaurant instead of take out. CDC says people who have been vaccinated can be together with out mask (still small group). The biggest issue is- a variance in the virus is happening coming from some of the other countries and have been found in the USA.

time for healing

Well we have survived the elections and it has been announced that Joe Bidden has won. The current president is not giving up he has filed lots of law suits, but hopefully it will all be finished in the next month. I just want the United States to become the UNITE States again. I hope the we can all be Kind again.

I have learned that I do in fact have ALPHA-GAL syndrome (Alpha–gal syndrome is a recently identified type of food allergy to red meat and other products made from mammals. In the United States, the condition most often begins when a Lone Star tick bites someone. The bite transmits a sugar molecule called alpha–gal into the person’s body) so now I have to once again adjust my eating habits and exclude even more things.. When you have the Alpha-gal syndrome you are allergic to and can not eat: Beef, Pig, lamb, goat,buffalo,elk, deer, I believe that just about covers it basically I can only eat fish, and fowl.

A friend was telling me of a friend of theirs who has Alpha-gal and how they went through a rough time or anger and depression when they would out. I had the when I first found out I have celiac I remember coming home from the store and crying all the way home that I would never get to eat anything again. So I have gone through that already so having to adjust my eating habits again just doesn’t seem so much of a big deal.

So as we go through November may we all now remember to be thankful for all that we have and most important is to BE KIND

Owning it

I have been watching television and I noticed a ad for a company called Nasty Gal. It made me thing about owning what people say about us. At one time when someone wanted to speak bad about a women they would call her a bitch but now we own that… We call ourselves I am a bitch let me tell you. So recently some one has started to label some women as Nasty Woman. So women are owning it and saying I am a Nasty Women.

So when someone is to cut you down by calling you a name. Own it take the wind out of there sails and say sure I am ….. what you going to do about it.

Goodbye August


Well that was summer, now comes September well I am sure we are still going to have warm days but it always seems that once August ends that is the end of summer we have labor day and everyone returns to school from summer vacation. Summer 2020 has been something I could have slept through and you know what I may have. There is not a lot about this summer that I can talk about. The Best I can say is COVID, but honestly — many protests and riots, such hate and anger all around. People just being rude and entitled. Double hurricanes hitting the Gulf region. Mandatory mask wearing all most everywhere and truthfully I would wear the mask even if it wasn’t mandatory. Oh and what about all the political ads they are soooo nasty. I just feel I can’t believe any of them.

I have spend the last few days sorting through my art room and art supplies. It seems I have three hobbies – making art, collecting art supplies and trying to organize the stuff I have so I can get more art supplies. Such a circular hobby don’t you know.

Well that happened

I woke up this morning around 5am for some reason I checked my email and had about 4 emails saying I signed up for some online course, that I didn’t sign up for, The cost was around 300.00 and put me into the negative in my bank account. I also checked my bank account and saw the charges. So first thing I did was call and told the banker I didn’t place those charges so they issued a case and closed that card. Now I have to wait for a new card and for them to investigate to maybe return the money to my account. In this case I believe the account was hacked and signed up for then they would contact the teacher and tell them they didn’t have access to the email account and give them a different account and then be able to take the class for free on me.

Okay why am I airing this in this blog. I don’t know but I am angry that it has cost me time and money to solve this. I now have to inform anyone who I have reoccurring charges/ subscription that are on that card taking more of my time. I just don’t understand why, people do that. If is a joy in making people suffer, or joy of getting things for free. I don’t know why…… I hope Karma is listening.