This past weekend was really long and kinda depressing for a few reasons. Of course the first 2 reasons center around Tiara, her health and her horrible behavior and the last one is about money. This is what happened.
Two weeks ago the common cold managed to find it’s way into our house again despite my obsessive handwashing. Tiara and I both got sick but I recovered very quickly. In the whole history of Tiara’s life, that being 14 years, only one time can I remember her getting a regular virus and not needing antibiotics. Of course antibiotics don’t help a virus, but invariably the simple virus ALWAYS turns into a secondary infection. Either a sinus infection, bronchitis or pneumonia, which all require antibiotics. Before her last hospital stay after Christmas she was taking Augmentin and developed cold sores all over her mouth. The doctor said she was allergic to Augmentin and could no longer take it. I was pretty stressed about this because Augmentin has been her go to antibiotic for years, aside from the Z-pack (Zithromax).
So last week I could tell her cold had turned into a sinus infection so I brought her to the doctor’s. He prescribed the Z-pack and everything was fine until she started itching her vaginal area like crazy. This probably isn’t a subject you want to hear about on a Monday morning but it is my reality everyday. Since Tiara wears a diaper she always has some kind of rash down there. She is always complaining about itching and everyday I try to assess which is the best type of cream to apply. I rotate between Desitin, A&D ointment, Cortisone cream for the leg area with eczema and Vagisil for yeast infections. Needless to say nothing I put on was working and she couldn’t even sleep through the night Thursday, she was itching so bad.
The rash looked worse than normal, so I called the doctor Friday morning. They prescribed another medicine for yeast infections over the phone, as their office was swapped with patients. The new medicine seemed to help so Friday night Lou, Tiara and I went to the Yard House for dinner. Trin was at a play date so it was just the three of us and she was an absolute angel. She was so good, Lou and I were pinching ourselves. But by the time we got to the car her old self had returned. She started kicking me in the head while Lou was driving and pulling my hair. Over the past week I have noticed her behavior had been escalating and assumed it was from being sick, or rather I am praying it is only a response to the illness.
Saturday morning I woke up and as I was feeding her breakfast when she complained about her mouth. Hummm. I looked at her lips and there I saw the familiar beginnings of 2 huge cold sores like the ones she gets from taking Augmentin. How could this be? She then complained about her breathing and I went to get her nebulizer. I set it up for her and went to the computer to do a little research. It appears that if someone has been chronically sick and has a suppressed immune system they can easily start getting allergic to antibiotics they have taken for years. The website also went on to describe a rash, “that could itch” which could also be a sign of an allergy to antibiotics. WOW, now she is allergic to Z-pack! I also realized why none of the medicines I had been putting on her vaginal area were working, because the Z-pack was the culprit.
I spent the next few minutes contemplating what this meant for Tiara. What if she began to get allergic to every antibiotic? How could she survive, when she is always sick? Will she eventually need to be hospitalized for every virus? Will a simple infection kill her? Too depressing to think about, so I moved on with a heavy heart. Lou went to the gym and we were bored so Trinity and I thought it might be fun to go to the Farmer’s Market in CDM.
Big mistake! She she acted worse than horrible and both Trinity and I were miserable after 10 minutes headed straight back to the car. She kept hitting us both and refusing to get back in the car. Trinity sat in the car and I sat on the sidewalk for 15 minutes while we waited for her to decide it was time to go home and get back in the car. Once we got home, Lou offered to take Trinity miniature golfing and Tiara climbed into bed. It was noon. I felt so tired, I climbed in with her and we slept until 2:00p.m. I felt like I could have slept forever, that is until my Mom arrived ringing the doorbell to bring me some orchids. Truth me told I was really depressed about Tiara, her sudden return to horrible behavior, her allergy to the Z-pack and the fact that we had just got paid that day and I had to face the bills.
The next big stress in my life, paying the bills. Every month more money goes out than comes in. It has been like this for 8 years, and we have been able to keep ourselves a float but the raft is about to pop. I want to just throw in the towel, but for the first time in 8 years Lou has a job that could get us out of this rut. Of course it takes time, but my nerves are frayed. Having to worry about every penny and take care of Tiara and provide the other girls with everything they need is too much. I want to stop paying for our house and use the money to pay off our credit cards and hope the bank will finally agree to give us the loan modification they have refused us twice. Lou wants to keep paying everything, while putting ourselves more in debt and make it work until we see more income from his new job.
After the bill discussion and my nap to escape my life, I realized Trinity looked as depressed as me. I decided her and I needed some alone time. We left Tiara with Lou and went to Balboa Island. We walked up and down the main street holding hands. We were actually able to walk into the stores and look around because we didn’t have Tiara with us. We only had 45 minutes of freedom but it felt like an eternity. Of course throughout our short un-interupped time together I once again thought about what I always think about when I spend time away from Tiara.
Is this what it’s like to have a”normal” life?
Someday I will have one but when that day comes it means Tiara is no longer with us, so I don’t pray for my life to be “normal”, I’m not ready.
xoxo tiffani
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How did you get my life!! LOL!! Seriously, I know exactly how you feel. Bethany had a melt down in the grocery store over peppermints. She chokes on them. She sat right down in the middle of the aisle. I had to pretend to leave and hid just out of her sight until she calmed down and we left without buying anything! This morning I paid off some unpaid medical bills and now there is nothing left! I do so hope you feel a little better today!
My daughter had an awful high fever last month for 3 full days/nights. I barely slept and she constantly sneezed and coughed on me and everywhere. I walked around the house with a scarf over my nose/mouth, washed my hands every 15-30 minutes (that’s not an exaggeration) and hers often too. And I went through 3 bottles of Lysol IN ADDITON to the bleach (3 parts bleach, 1 part water) spray bottles I keep in each bathroom and the kitchen, always wiping down counter tops with it. MIRACULOUSLY, I didn’t get sick. Maybe it was my efforts, maybe not. But it’s worth a try next time someone brings a cold home.
That is amazing, guess that will have to be my approach next time someone brings home a cold.xoxo tiffani
I’m so sorry we have the same life. I guess when you have a kid with special needs we are all living the same reality. I’m ok this morning, just needed to vent.
xoxo tiffani
Oh and I flushed out my nose with Simply Saline (TMI, sorry) every couple of hours – per the advice of the ENT doctor. Hey, I tried it all!
Oh my Tiffani! You sure know how to tug at the heart strings! I bet you feel better getting all of that off your chest. You are a special lady who was given a special child. I hope the doctors can figure out what to do for Tiara. Keep us updated. I hope your week is better and that she was just acting out as a side effect from the rash and medicine. Hugs, Stacie xo p.s. You are a no reply blogger, so when I try to reply to your comments through email, it doesn’t show your email address. Don’t ask me how to fix it because I don’t know since I am on Blogger and you are on WordPress. Google it maybe. Has anyone ever told you that before?
No, they haven’t! Thanks Stacie, I will look into it.
xoxo tiffani
Tiff, the antibiotics kill the bad and good bacteria in the body. Good bacteria is needed to regulate the flora and fauna down there. Try using clotrimazole over the counter anti-fungal cream everyday once the infection cleared up. Maybe ask your doctor about a single pill she can take to clear up what she has now. Hang in there darlin…you are a star oxo
good idea Sam, thanks! They are worried about giving her the one pill because it interacts with all her other meds. UGH..
xoxo tiff
Dear Tiff,
Thanks for sharing what is really going on with you. Once again, you share your real life, and it helps me to reconcile whatever it may be that I’m going through…
I had this amazing few weeks recently, I started to have these deeply happy feelings again like when I was younger….and I asked myself what was different???
Well I was just saying to my fiance (at about 6pm last night) that I didn’t realize how much shit had hit the fan at once- until it was all blown over! Fall of 2012 sucked! My new job was a nightmare, my dog was dying, I was moving (moving is such hell), my mom went in for simple surgery and ended up on the trauma unit, and both my brother and my sister were going through difficult VERY life-changing events (they needed me too). All this not to mention my 16 year old son was just being a 16 year old boy and doing what they do- SO STRESSFUL.
And then there was a two week break, where most of those things were blown over…
Until 7pm last night when I learned my Dad needs surgery and my son spiked a fever got the flu and and and….life starts again….
But I will remember those 2 weeks for a very long time, what life is like without intense hardship. This is what I wish for you, dear friend..just a break would do wonders and you SO deserve it!!!
Regarding the antibiotics, my son did SO WELL with Augmentin for ear infections as a little one- it was our “go to”. Then he broke out in a rash and we could never use it again. As far as resistance or limited use of antibiotics, the science is getting good at getting around that! We have a few strains of resistant bugs such as MRSA (I’m sure you are familiar with that one), and one way or the other good doctors are able to treat infection….and I’m hoping the science continues to improve in the area for Tiara’s sake….
Keep the faith, love. When nothing else seems like it works, ask God to show you the way and give you peace. It’s so easy to forget to do that, but so powerful when we do!
xoxoMarcy
I am so happy you had a few weeks of happiness without any hardships. It does the soul good.
Thanks for always writing such inspiring, beautiful comments, they always make me feel better.
xoxo tiffani
P.S. That’s my favorite pic of you and Tiara! The light in her eyes really shows…xo
I just found your blog and have been reading for the past 3 hours.
My sister passed away at 6 months, born in 1982 otherwise healthy baby and birth, but she declined in the next few months (seizures, trouble breathing, etc., etc.). My parents always planned to have two children so if it wasn’t for her passing I would have never been born. I have an older brother and then of course me.
I just wanted to let you know that I think you are an incredibly strong woman and I also wanted to send some love to your two other daughters and husband for being just as strong.
You remind me so much of my mom because I think she would have done the same. I don’t have children of my own, but taking on this type journey is for the lack of a better word tough and I hope you take the time every so often to really enjoy, breathe, take a step back whenever you have the time.
Thank you Hannah for you kind words. I am honored that I remind you of your Mom, she sounds like a strong woman. Thanks for spending three hours reading my blog, that makes me feel really good.
xoxo tiffani
Essential oils have helped my family’s health so much! Probiotics will also help with the yeast infections, as already mentioned due to the killing of friendly bacteria in the gut. There is also the problem of resistance in taking antibiotics. It is a vicious cycle.
I have a friend who sells essential oils, I may be ready to give them a try.
xoxo tiffani
Also, glad you were able to get a break. We all need them sometimes. Hugs to you and your family.