I have Idiopathic CD4+ Lymphocytopenia (ICL). All of my friends and family know that. But Immunodeficiency problems are not entirely uncommon - the medical community is just realizing they need to be looking at the immune system more. My immunodeficiency is rare, but not CVID, SCID and so many others. I want to educate people on Immunodeficiency so one day a week (Wednesdays) I will try to tell you a bit about it. Today, because ICL affects me, I am going to elaborate on what *I* deal with on a day to day basis.
Immunodeficiency means part of your immune system is broken. Your immune system is largely what causes your blood work to register what is right and what is wrong. If your immune system is broken it is often difficult for the medical professional to look at blood work and get a good 'feel' of what is going on. So blood work is definitely a problem with me. About the only thing that is nearly always accurate is my t-cell count. And it keeps dropping. Nuff about that for now...
If a medical person is not knowledgable about immunodeficiency, then you have to be the one to explain what is going on to them, AND you have to hope they listen and don't take the Dr 'I know more than you do' stance.
Diet. Did you know an immunocompromised person has to really watch what they eat? HERE is a good general idea of what we have to pay attention to.
It gets worse! The link below is one my Dr referred me to. Because I basically have no immune system, it is like I have had chemo (I haven't) (but chemo drastically compromises the immune system), so the more in-depth diet I have to follow looks more like THIS.
A few things that I have to watch:
I shouldn't eat at a buffet.
I shouldn't eat jalapeno cheese because peppers in it is raw.
I shouldn't eat yogurt with live cultures.
No more over easy eggs for me.
Bacon has to be well cooked. As in nearly burned.
Too many things to mention, but you get the idea. Food is a real problem for us. We have to be sure every reasonable thing has been done to keep germs away from it.
Now think about eating out...
Is the table clean? Are the dishes clean? How about the silverware?
Salt & Pepper shakers? Parmesan cheese? All the things sitting on the tables... yeah, don't touch them.
God help us if there is a problem (illness, less than sanitary conditions, etc) with the cooks...
I was sitting in Pizza Hut waiting on my personal pan pizza and a young child reached over, grabbed the Parmesan cheese container on his table and LICKED THE TOP! His mom fussed him, wiped it off with a napkin and put it back. *sigh*
I usually ask for "to go" packets if I need one of the table condiments. How many hands have touched all of them?
I shouldn't take probiotics - live good bacteria... but my body doesn't know good from bad... (try this when you are on 24/7 antibiotics)
Immunizations? Guess what? I have no immune system so immunizations are useless for me - you have to have an immune system to build an immunity, right? Think that one though. Tetanus? Flu? Pneumonia? Hepatitis? I had all the overseas immunizations and the Dr tested me for them less than 5 years into them. I did not even show immunity to one of them. She gave me 3 more and in 3 months, more blood work. It was like I had never had them.
It gets better. Any immunizationw with a live virus is off limits to me. Better than that, I can't be AROUND anyone that has HAD a live virus immunization for 3 weeks. Now how the heck am I supposed to be privy to that information?
I am not the only person with ICL / HIV Negative - there are less than 100 of us known to the National Institute of Health. We are not contagious. There is very little known about why we have this but they suspect it is genetic.
My entire life, I have been sick, but even more as an adult. Immunodeficiency is a difficult life - whether it is ICL, CVID, SCID, or any other immune system deficiency.
So now you know just a bit more about my struggles.
I am not alone. I have friends that have immune deficiencies. However, they are all online friends. I actually "know" no one in real life.
And finally, immunodeficiency is represented by a zebra. Isn't that cool?
Taken from the Immune Deficiency Foundation:
"The primary immunodeficiency community often identifies with zebras. This is based on an old saying. In medical school, many doctors learn the saying, “when you hear hoof beats, think horses, not zebras” and are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra. Patients with PI are the zebras of the medical world. So IDF says THINK ZEBRA!"
And THIS FOUNDATION does everything in their power to help us muddle through the muck - and there is a lot of muck for us. Paperwork, lab work, Drs, Specialists, insurance problems, insurance refusals, medicine funding, and just moral support...
Enough for today's lesson... tomorrow, back to the fun stuffs!
Before Steve and I were even married, I lost part of my family. My mom was adopted. Her entire life her adopted brother was very mean to her. When she was older he got meaner - and once he told her the family hated her, tolerated her and never wanted her in their lives. She believed him. She just quit visiting with them. Her adopted mom, her cousins and... well, the entire family. If she wasn't wanted, she wasn't going to force the family to 'tolerate' her. Why would she? She once got a very ugly letter from my Uncle Billy's wife. I won't even repeat what was in it - other than to tell mom she was a burden to everyone, she owed them thousands of dollars for grandma's care and if she ever tried to contact her they would put her in jail for not paying. It was a mean, ugly letter. This was before cell phones, facebook and all that unites us. Mom was broken hearted, disconneted and died thinking she was not wanted by anyone in her adopted family. Fast forward to now. Our family is all on Facebook. Somehow a cousin got in touch with us and we all visited back and forth for a long time... gently treading waters because, heck - we didn't even know each other any more, even though years ago, Melanie, Valerie and I were as close as cousins could be. When we went to grandma's house before all of this happened, we all loved spending time together. We had Easter Egg hunts, Thanksgiving meals and Holidays together. We loved each other! Again, fast forward to now; one cousin finally asked me why we disappeared off the face of the earth. We talked online and I told her the 'short story' version. And she said, "My dad was a ass. Not one person in our family loved him. No one even liked him. He was vicious, he was a drunk, he was a player, he was hateful, he was mean and he died a lonely death because he was such an ass. None of us children had anything to do with him. He was a mean S.O.B. through and through. I am sorry your mom was told that, but we all loved her and missed her. Grandma just didn't understand why your mom quit coming around. None of us could ever could figure out what happened." And so, we never had to lose that part of the family. Grandma died broken hearted because she thought moma had disowned her, moma died thinking grandma and the rest of the family didn't want her and our families separated and went different ways for 40+ years. But last week, we had a wedding in the town we lost. Since I was going to El Reno for the wedding, I made arraingements to meet up with my cousins - they all lived there still. Liz drove in from Okmulgee. Sherry (my baby sister was named after this cousin) and Melanie met us at the campground and we talked. Heart to heart talked. And we reconnected. And I am finally a part of the family we lost so many years ago. One person can cause so much heart ache. He was my uncle, but he was their father. How sad is that? But he doesn't control us anymore. We are once again family. Thank you, Liz, Sherry and Melanie for opening those doors. What a wonderful family reunion! We have sure missed you. We have always loved you. I am so glad we are together again. We may have lost 40 years, but here is to the next 40. I hope grandma and moma are reunited in Heaven and know the story now. Here's to more fun times!
If you are going to ear tag your own cattle, you must do it when they are first born; weak and not yet fighting strength. That comes within the first couple of days.
While we were gone to the wedding, our other 4 cattle had their calves. Megan thinks she is the 'calf whisperer' now! She was staying at our place when all those babies were born. She is so stinking cute! I think she might have been having a blast though!
Anyhoo, Steve had to tag the calves that were born while we were gone. He had tagged Rojo the first day he was born, but these calves were a few days old when we got home. He did it, but not without (maybe) rolling in poop, being stepped on, cussed out by the moms, having part of the round pen knocked down, a few fingers mashed and kicked a few times!
We named the first red-headed girl (below) Little Megan. Guess why she got that name? Lol...
Here she is with her earring!
Just a few pics of the other calves... we have 3 new heifers and 2 new bull calves.
This one got stuck in the hay ring. Steve had to show it how to get out... lol...
Farming is a crazy life - but it suits us. We learn a little every year to make us more efficient. Thankfully, Steve has Rod and Mike to help us along when we are in the 'need to know' part. We definitely need to know a lot more than we do.
Thankfully all are ear tagged now and we can start enjoying their antics - and the 'need to know' is marked in the 2018 calender to tag as soon as they are born.
About the antics... all 5 babies chase the chickens, the dogs chase the calves, the donkey chases the dogs and we chase whoever we need to catch in the moment. It was definitely easier when I had a 4 wheeler, but we get along... lol...
Farming is fun and entertaining to say the least. And I think our neighbors think so as well. I am sure they are watching our crazy little farm; but its "Justa Little (crazy) Farm".
Here is the lowdown for future reference: Maddie had #14 (aka Rojo/bull calf) on Wednesday, March 8th while we were still at home. Sadie, a new freshner (1st time calver), had #16 (heifer) on Friday, March 9th Hazel, had # 15 (heifer) on Saturday March 11 Lucy had #18 (bull calf) on Monday March 13 Elsie, also a new freshner, had # 17 (aka Little Megan), during the night of Monday, the 13th or early Tuesday March 14th.
And I love listening to her! This piano was given to her by the church! They had 4 unused ones sitting around and the preacher really thinks she has talent, so they gave it to her! All her mom and dad have to do is get it tuned. Isn't she great? She has only had a couple of years of lessons. This is just a bit of her playing - we took a better one, but it was too long. BUMMER. Oh! And she is wearing green! Are you?
Amanda, Steve's step brother, Mike's daughter got married! We helped out at the wedding and had a blast! We left last Thursday and just got home today. What a beautiful wedding! There were at least 250 people there! Oh my gosh, it was the most perfect wedding I have ever been to! LOVED it!
We stayed in El Reno for 5 days while the wedding festivities were taking place. Here is the happy couple after the wedding:
Aren't they adorable? We had an absolutely wonderful time at the festivities! As usual, I am sick. I still haven't gotten over that mess with the flu. The flu is gone of course, but the crap from the sinus/chest just keeps hanging on. And I am pooped.
Of course, this after going 9 days straight.
I am trying to rest now that the wedding is over.
Steve and Aunt Sandra cooked fried fish and boiled shrimp on Friday, Saturday was the wedding and we left the campground Monday. Tuesday I was in charge of decorating for an OHCE Awards Banquet and Wednesday I had an OHCE Executive meeting. Wednesday (yesterday) was also our 40th anniversary, but I was too tired and too sick to celebrate. This is my world. I try to keep on rolling, my body rebels and I just can't get it through my head that I will never be able to go, go, GO! like I used to. Sinusitis is extremely common in people with immunodeficiencies. That is me. ICL sucks.
Our first red bull baby born on the farm was born on March 4th. It was a busy day...
Steve named him Rojo!
Here is his first picture with all of his aunties checking him out and Windy getting to know who to guard. And believe me, Windy guards!
It is even difficult to convince her that momma has to feed him!
He is adorable! Here he is only a couple of minutes old. His mommy is the black and white lady behind him. The one with the KISS makeup on.
We found him tucked away in the field yesterday a very far distance from the rest of the cattle. They are pretty good at hiding him, but he was no where near where any of the cattle or Windy could see him!
Since it was so far back on the property by the wooded area (coyotes), Steve decided to make him walk closer to moma. He was little and it took a very long time, but they did it! Here they are together. We have pet him, talked to him and just loved on him.
I love this time of the year - spring baby time...
Here he is all pooped out. Check out this little man's eyelashes!
Welcome to the world Roho! It is an excited life out here on our little farm - there is lots for you to get into. Listen to mommy and don't let Windy boss you around, ok?
Only four more babies to be born. One boy; what will we have next?
This is Windy - yes it is spelled right. She was born on a windy day in Oklahoma, so her previous owners named her Windy. She is the sweetest donkey ever - and she watches over her cattle and nudges us for treats. We often see her running like a maniac in the pasture, rounding her herd up to show them who is boss. Windy is definitely boss out there.
We have found piles of crushed bones and tufts of fur from what 'once was'. We can't even tell WHAT it once was - but it is gone now. We presume from the fur tuft colors it is likely coyotes, but since it has been reduced to nearly dust, we aren't sure. What we ARE sure of is that she protects her herd and we haven't lost a cow or calf yet.
This is the time of year we depend on Windy. She is very careful with her newborn cattle. From the moment they drop from mom, she sniffs, circles, gets to know them and valiantly protects. She is as good of a watch dog as you can get.
Our momas are all getting ready to have babies! This year we will have 5 new babies! That is what farming is all about - spring time babies; calves, chickens and goats (Steph). We sure do have fun seeing them born and getting to know and name each of them.
These girls are getting HUGE!
A couple of the younger calves (here a steer) like "Chuck" here are just hanging out... waiting to be next years supper... we love them until we take them to market.
Here is Daisy who is just taking lessons from the older girls; she is just a year old - too young to calve, but next year she will be one of the girls calving...
This is Ashley, another year old heifer, so she not calving yet. Ashley was named (by request) after one of my girl scouts! Ashley begged me to name a calf after her.
So here is our little wild-ish child!
Here is Elsie (first time mom-to-be) and Chuck again. They are buddies:
Here is one of our original cattle; Hazel, due to have her 3rd calf with us:
And this is Maddie; 3rd time calver with us and more than ready... lol...
but she is always eating!
I believe this is Sadie, but I can't see her ear tag. She is a first time calver though if it is:
Why do we name our cattle? Because we don't want to call them a number! We would rather a name - if he says "Sadie is calving", I know who exactly who Sadie is, but if he says "5 is calving", I would have to whittle through WHO is calving... lol...
And we won't share pictures of T-Bone and Porter... they are at the butcher. Our first ever fresh, home grown beef. Did it hurt us? Of course! But that was always their destination. To know exactly what food was treated with that we put in our mouth. Ours were treated with good wholesome food, lots of laughs, respect, and pets (yes, pats on the heads) and lots and lots of love - and they never saw a stockyard. Ever.
And we can live with that.
This is Chelsea trying to look bigger than Jake:
But she is not bigger: We figure Jake is around 125 lbs and Chelsea is a whopping 45 lbs:
Mouth on fire... Headache... Chest congestion... So here we go again... Is it sinuses?
Is it thrush? Is it flu? Is it just a cold? Am I just overtired?
Or is it something else? With ICL, you just never know what that fly swatter is swatting. Immune systems tell our bodies what we are fighting... but when we have no immune system it is a constant guessing game. For me is a guessing game, for Steve it is helping me guess and for the Drs - the same. Blood work seldom leads us to the problem. Because bloodwork depends on a working immune system. Of which I don't have... I go with thrush and start treating today. Tomorrow we will see. Another day in the life of an ICL patient. *rolls eyes*
As I said before, since I don't get out of our little area much, I sew. I was blessed, for Christmas and my birthday, this last year with Steve insisting I get a 'good' sewing machine. Well, did I ever! We purchased a nice Baby Lock Unity - and my goodness - do I love that machine! I guess it is like my Harley! Lol... So the first quilt I have made on it was the Cumberland. It is such a pretty quilt - I absolutely love the colors in it! I think I need to remake this one for Steve and I. It is so warm and cozy.
The Cumberland is all finished now and ready to give, as a gift, to a niece that is getting married soon. I hope she loves it as much as I do!
I am posting the above picture so you can get an idea of colors I used in it. As I said, I just love them! The beige on the side is the backing, the salmon color is the binding.
You can see below how it came out.
This is my first ever corner stone with my new machine! Didn't it come out great? I think I am in love with my Baby Lock Unity!
And my first ever signature block is finished! I will indeed have it dated with my name under the dedication as well. Stay tuned for an update...
So that is what I do with my time, I shop at fabric stores, I "take big pieces and cut them into little pieces, then I switch them all around and make big pieces again" - Steve's assumption of what I do.
I have just recently started making quilts for gifts. This is actually my first wedding gift one - and I think I have some catching up to do. But now I have a reason to quilt! GIFTS!
You just never know what will happen when a loved one dies...
I grew up shuffled around between parents and relatives. One of the constants in my life was my Aunt Connie. She eventually remarried a man we came to call Uncle Ed and they lived happily ever after - for 37-38 years. Steve and I (and our kids) spent lots of time traveling back and forth to Selma to see my aunt and uncle. They were marvelous and fun people to be around. Aunt Connie would have you in stitches the entire time were were there. She was a hoot to be around and had a personality like no one I have ever met. She was a trouble maker in a good way, a prankster, a giver, and lover and just a blast of an aunt.
One day Aunt Connie became very ill and went downhill quickly. My sister, who had been partially raised by them, and I ran to see her, love on her and embrace them both. It was a terribly disheartening situation, but we wouldn't have missed that last little bit of time we had with her. Uncle Ed wasn't healthy either, but he stayed by Aunt Connie's side the entire time. I can't tell you how much we enjoyed the visit. It was a blessing to be able to be there even for a bit.
When Aunt Connie passed away, we stayed in touch with Uncle Ed while he was home; I am sure not as often as we should, but the pain he was in when we did talk to him was obvious, he was lonely, broken hearted and it made us wonder if we were hurting him more by calling him instead of letting him heal. Oh, one of us called at least every week or so, but we didn't call daily. His family kept tabs on him, and in a bit of time, they decided to have an estate sale and put him in assisted living home - which we do believe was a good choice. He needed proper care, food cooked for him and out of the home they knew and loved - which was stuffed with wonderful memories, but also huge amounts of work, and not near family who could oversee his needs. He needed change. We agreed with that move entirely. We were notified, by a relative, of the estate sale (which we might have loved to shop at - not paw through) on Tuesday before it started a day or so later. There was no way to plan a quick trip and absolutely no definite time the sale was to start. Just "its happening", basically.
We dealt with it. I cried. Memories that I loved would also be sold at that sale.
Then Uncle Ed was moved to a facility near family. No name. Heck, not even a city! You see, I never knew *his* family as they lived in another place. I had only met them once or twice in all the years I went there. We were just told he "was moved and is safe".
I asked for a phone number to call him. "They don't want you to have his phone number, something about he can't hear..."
I asked for an address to send a card. "I will ask if you can have one." "They don't want an address given out."
I ask how he is doing. "Oh, he is ok..." I ask for a number to call his kids. "I will get it..." but no one answers the numbers we were given.
I am sure this was difficult on the people sharing this tiny bit of information because I can only assume they were really put on a spot. It has been well over a year since I have heard jack squat about Uncle Ed because those vague answers and evasion tactics simply hurt deeply. I have never, ever hurt the man, I have not stolen from him like his own son did, I have fought for him and Aunt Connie when his son *did* steal from them. I am only ever guilty of loving him deeply, very, very deeply. Why are we kept out of his life? I don't get it. *I* have never done anything except love them unconditionally. The hurt is deep. The missing him during his transition was deeper. I couldn't hear his voice, I can't send him a card, I can't share these precious pics of them. There is anger, there is disbelief - but mostly there is a deep sadness and sense of loss. I don't understand at all. I have no concept of what happened. None. Nada.
How many elderly people are tucked away in a home and led to believe no one on earth is left that cares for them? Is this why?
So as I am sitting here sifting through memories through tears, but I can only hope he is ok.
So here ya go, please enjoy a few pics of some of the most precious people on earth: Just an aunt and an uncle who happened to be some of the most important in my life. I lost not one, the day I lost my Aunt Connie, but I lost both. When someone dies, you just never know who else you will lose in that process - and probably won't have a clue as to why.
The pain I have lived with so many years just kept getting worse and worse. My ankles could not support me without causing misery. I had to go to a physical therapist/ chiropractor several times a month just to survive. I couldn't walk far without stopping I tears. My entire body was inflamed and ached through and through. My bones even hurt! I gained more weight, of course... if you can't walk, excercise or move without agonizing pain, how could I not? I had a friend that I had met in Bayou Vista call me probably in Nov or Dec last year. I met Renee inTulsa while her hubby was at a gun (?) show. We went to lunch, laughed, talked and had a wonderful visit. During the visit, of course we caught up on each other. As usual, my frustration was high, I bawled and she sat and listened. She hugged me. She prayed with me. And she suggested a large part of my pain was food. Here we go again... give up bread, sweets, all the good stuff... But I shut up and listened. I hated where I was in life - killing myself with anger (at myself), food, self-pity from my circumstances and bery, very ill. Why bother? But, I listened. And it clicked. What would it hurt? So after separating, I researched for weeks and finally came upon the Whole 30 Diet. It takes away all the bad stuff for 30 days; you only eat meat, veggies and fruit. No limit on amounts, just don't have anything else. You only commit for 30 days before reintroduction of potential problems; one at a time. I did it! It was a very difficult month and when I wasn't strong, Steve was strong enough to redirect me. And when I started adding the food back, I found my inflammers! LEGUMES!! Yes, BEANS! And SUGAR! I have mild reaction to gluten, corn and dairy - but very tolerable even when I do indulge - which is few and far between. Not so with sugar or beans. I cannot function. At all! So, now I am very aware of my inflammers thanks to the Whole 30, and I stay away from them. And since I am aware of what I put in my mouth, I watch... and I can walk... and the weight is coming off! And more importantly While I do have pain, it is no comparison to what I suffered prior to this diet. I can now focus on getting as healthy and enjoy the life I am living! That is sweet. Thank you Renee. You saved my life. ❤️