Update: Quick Trip to Valley Fever Meningitis

[suzieq_n_ks]

Well it has been a year and a half since I last talked to you all. In that time I have learned many things. The biggest one would be that I am always telling people that they should never ever take their health for granted. I know I wish I wouldn’t have. There are days where I wish I could go back to when I was healthy but I can’t and now I am left trying to figure out how to get my life back again so I can ride a bike, go horse back riding, jogging and hiking. To actually run around with my girls like old times would be nice. I would just love to make it through one day with out any pain. I’m always trying to remind my self that there are so many other people out there that have it much worse than I do. I don’t want to be caught on a pity pot. So I just try to tell my self that Daddy (which is my Lord and Savior Jesus Christ) has an amazing plan for me and maybe that plan is to share my testimony with others to let them know that they are not alone. I can tell you sometimes living up here in Kansas it does feel like I am all alone with Valley Fever.

It was October 27, 2007 (my 37th birthday) and I was in Sedona and I ended up in the hospital for 2 weeks. What a great birthday that one was. Looking at the pictures my husband took of me in the hospital I really didn’t look very pretty. Anyways the first week in Cottonwood I really only remember a few minutes out of that whole week. I can’t believe one could be so sick that they can’t remember being in the hospital but it’s like that week never ever happened. What I can say now is that my life has truly changed a great deal. I can now say I am no longer going from 6 am to 11 pm anymore. Right now I’m just trying to get through each day and trying to get more than 3 hours of sleep a night. I haven’t figured that one out yet, but I’m working on it.

We did find out that I am struggling with a connective tissue disease and they think it is Sjogrens and Lupus and Ranaurds, which is on top of the Valley Fever. I know - did I win the Lottery or what? I’m not sure how one can leave on vacation with her husband for a business trip/romantic weekend and end up with all that. Of course they do believe that I had all of the above before the trip and I did have some thoughts that things were not quiet right with my body but I never would have imagined what was about to happen. My thoughts….Bummer!!! See…. don’t take your health for granted.

Anyways I just got back from seeing Dr. Spooner down in Douglas, AZ and he feels that most of my problems are from the connective tissue right now and that the fungus is under control but he went ahead and ordered up a CT and X-ray of my chest and an MRI of my left shoulder and then the vampires of course get to suck my blood again. Not like they haven’t had enough already right!!

I think where I left off last time was when I came home from the hospital I was down to 112 lbs …. I had lost 23 lbs in those 2 weeks. Let me tell you at 5’11 I did not look very good. I was throwing up everyday all day. But about 3 weeks after I got home I ended up slowing that down to maybe 3 or 4 times a day. Then about 6 months later it went to about twice a day and then another 6 months I was down to just once a day. The last 4 months have been good because I’m not throwing up anymore. I swear whenever I went anywhere I would end up in the public restrooms throwing up and when I would walk out the woman’s stall they would stare at me like I was bulimic. My husband would just laugh and tell me to just look at those women and tell them that I was out drinking all night.  Yeah like that one’s possible. Well I went from 112lbs in November to 118 lbs in July to 122 in November to 128 right now. Not bad right!! I only have about 10 more pounds to go. Maybe I will get that back by October, my second anniversary as the mushroom girl. That’s what my husband calls me….. his little mushroom girl. You really have to have a since of humor at this point.

The next thing on the list would be the pain in my shoulders, hips and knees. That pain is at times unbearable. I ended up with two frozen shoulders. Which any of you that have experienced this one, God Bless you. The pain is unreal. I just didn’t think I would ever sleep again. The right shoulder started in March of last year and totally froze by July and then started to defrost in October. Well when the right shoulder started to freeze I started Physical Therapy and at that point the left arm was starting to hurt and I was scared that it was going to freeze as well but the therapist said that if I kept moving it that it would not freeze. So what did Suzie Q do she moved it all the time because I just could not imagine two frozen shoulders. I was not sleeping as it was with one. But the left shoulder started to freeze in July and was frozen by September and in the last two months it has just now started to defrost. The pain would be so bad that I would just stay awake to all hours of the night. Maybe 1 to 2 hours a sleep a night is all I got. I was so cranky. And seeing how none of you folks know me, that was not me at all. I was always playing tricks and getting crazy and being crazy. I love to have fun, but at this point you wouldn’t even know me any more I just yelled all the time. It was BAD!! I swear the girls and Ryan Ray wanted to sell their little mushroom girl. Well with the pain as bad as it was and me losing my mind we decided to go to the Mayo clinic (which was a waste of my precious time) to see if they could help me anymore than the regular doctors but that was a dead end road. You see you can’t treat the fungus and the connective tissue disease at the same time because one you suppress the immune system and the other you boost it. So the doctors tell me it’s more important to treat the Valley Fever so I don’t get the meningitis again, which all of you know it could kill me. I do however take plaquenil for the connective tissue diseases but they would love to give me steroids with my ANA as high as it is but we just can’t. So the pain lives on. I’m really praying for a cure for Valley Fever so then we can get aggressive with the connective tissue diseases.

Anyways with the two frozen shoulders I had very limited mobility of both my arms and so on a good day I might have gotten my arm up ¼ to maybe ½ way up in the air. So my girls started to call me Hitler which was so not nice but they would laugh and laugh at me trying to raise it to get it unstuck. So I have been called, in the last year in a half Grumpy, Hitler and The Little Mushroom Girl. I guess the whole family has had to have a since of humor. I begged the girls to at least call me John McCain but oh no I think they like to see me squirm. I love them so much I don’t know where I would be without them by my side everyday.

Well now for my knees. My right knee is the worse. If it is bent then I can feel the pressure building up and when I go to bend it will pop real loud and the pressure seems to be less. It is painful to do but it helps. So I try not to sit to long or lay down with my knees bent to long or if I do lay down then I try to lay on my back with my legs flat. No more squatting or sitting Indian style. My knees just can’t do that anymore. No more bending down to get the pan out of the bottom cupboard. I now get down on my hands and knees and then fish something out of the bottom cupboard. It looks crazy when I do that but I don’t have a choice. There are days where I feel like I’m 90. Lately I have been focusing on walking and trying to do it everyday but there are days I’m successful and days that I’m not. Sometimes the pain is so bad I go for the walk and end up crying through the whole walk and then there are days where I can make it through with out breaking down. It all depends on the day. I keep wondering why all those antibodies want to attack my joints and muscles. It seems like that this is a no win situation when there is no cure for Valley Fever. I now think I can do the weather report on the T.V. better than our weather man. (I know I know that doesn’t take much does it) If there is a cool down in the weather or a storm brewing I know it. Soon winter will settle in and the cold weather will try to wreck havoc on my little body but I guess with prayer all things are possible so I just keep praying to my Daddy for that cure.

There is really not much to say about my hip pain except it is real hard to have relations with my husband. The hip pain is also hard when I’m walking around to much. I work on stretches everyday but it is painful. My ID doctor really thinks that all the pain with my shoulders, hips, and knees is all due to the auto immune diseases.

This next one puzzles me and I am wondering if there are any other woman out there that have had this problem. Back in January I had my left breast swell up what seemed to be 3 times its normal size. It was red and hard and it had a fever. The doctors told me it was cellulitis. It took 30 days of meds to get this one to go away. My ID doctor said that sometimes the Fungus can grow and block the lymph nodes. It took a couple months for this one to go away. This one was a nightmare. It kind of reminded me of the times when I had my girls and was breast feeding and your milk just comes in and you’re just sitting there waiting for your baby to eat to relieve the pressure but in this case there was no baby just pain. No Fun!! Anyways I just thought I would mention it to see if anyone experienced this one. It is gone now. Praise Daddy!!

Another symptom I still struggle with would be headaches. Now the first year they were once in a blue moon but since April they are quite frequent. Actually Dr. Spooner has ordered a MRI of my brain and thinks that we may need to do another spinal tap. Just to make sure it’s the connective tissue and not the fungus. Also since April I have been struggling with night sweats. Not all the time but a couple times a week. Not sure what that’s all about.

Well this experience has taught me that I have two doctors in my life that truly care if I’m alive or dead and that is my family physician Dr. Hanson and my ID doctor Dr. Spooner. I have seen a lot of doctors in the last year and a half and these two are like family to me. Well at least they treat me like family. They treat me as if I was their own daughter. I’m so grateful to them both. My God has truly blessed me!

Well I am still not back to work yet and the days seem long but I do have the help and support of my husband and my girls and most of all my Lord and Savior Jesus Christ. Thank you Daddy!

Well I have really enjoyed reading up on all of the stories on this web site and thanks again Sharon for creating such a wonderful place for all of us to share our experiences with Valley Fever.
_________________
SuzieQ

[Ria]

Hi Suzieq,
You are the first person from Kansas that I have seen on this message board. I live in Overland Park, Kansas. Not quite sure how far Salina is but if you ever need another doctors opinion I would be more than happy to pass along my Infectious Disease Doctors name. I hope you are doing well....thanks for posting.
Many Blessings!
Ria